Psycho-Oncology

The ‘Radiation Vacation’: parents' experiences of travelling to have their children's brain tumours treated with proton beam therapy

Sam Cockle, Jane Ogden

University of Surrey, Guildford, Surrey, UK

Background: Proton beam therapy (PBT) is a new form of radiotherapy that currently has limited availability in the UK; patients must travel to receive it. Little is known about experiences of patients undergoing PBT and less about parents' experiences of children receiving treatment. Travelling for treatment is also under‐researched but suggests additional concerns for parents. No research has explored the experiences of UK patients travelling abroad as a result of a referral to receive PBT. Aims: The current study aimed to explore experiences of parents taking children to receive PBT as a result of a referral from the UK to the US, and any additional impact of travelling for treatment. Methods: Semi‐structured interviews were conducted with 10 parents whose children's brain tumours had been treated with PBT at one of two US proton centres. These were analysed using thematic analysis. Results: Analyses uncovered themes of ‘adjustment’, ‘benefit finding’ and ‘readjustment’. Parents' initial worries were elevated, by travel but they went through a process of adjustment, allowing benefits to be found in their experiences, which were described in many positive ways. Following treatment, there was a need for parents to readjust once home. This was necessary in order for benefit finding to begin to occur once more. Conclusions: The results uncovered and illustrated a cycle from upset and worry pre‐treatment, to relative calm and benefit finding during treatment, back to upset and worry upon returning to the UK, requiring further readjustment before benefits could again be found.

Providing care at end of life: carer, GP and district nursing perspectives

Brooke Swash¹, Emily Moran¹, Stephen Barclay¹

¹University of Cambridge, Cambridge, UK, ²University of Chester, Chester, UK

Background and aims: Raising the proportion of deaths that occur at home has become central to National Health Service End of Life Care policy. The Community cAre Pathways at the End of life (CAPE) Study is a multi‐method study that seeks to understand current end of life (EOL) care pathways, clarifying and validating patterns of unmet need, and investigating what is needed to provide optimal care for people approaching end of life. Methods: Seventeen carer interviews were conducted 6 months after the death. Subsequent general practitioner (n = 17) and district nurse (n = 12) interviews permitted further exploration of these cases. All interviews were transcribed verbatim and analysed using a framework approach. Results: Qualitative frameworks were created for both carers and professionals. Analysis of carer interviews resulted in seven themes: illness, healthcare services, caring role, location, support, preferences and ideas for change. For professionals, eight themes emerged: illness, location, impact of caring, practical care provision, communication, patient, family and ideas for change. Carers prioritised practical and emotional support, particularly valuing consistent relationships with care providers. However, some carers found accepting support difficult. Healthcare professionals highlighted the systemic challenges to providing EOL care: both GPs and DNs perceiving disparities in caring for cancer and non‐cancer patients. Widespread unmet support needs were reported. Considerable variance in experiences of and preferences for care reflected a need for individualised support. Conclusions: Our results provide a novel insight into the facilitators and barriers to optimal care provision at EOL in the community from multiple stakeholders' perspectives. Suggestions for change are highlighted and discussed.

The impact of primary colorectal cancer treatment on physical symptoms and functioning in the first two years: results from the Colorectal well‐being (CREW) cohort study

Claire Foster¹, Joanne Haviland¹ Jane Winter¹, Chloe Grimmett¹, Kim Chivers Seymour², Lynn Calman¹, Dame Jessica Corner², Amy Din¹, Deborah Fenlon², Christine M May¹, Peter W Smith³, Alison Richardson⁴

¹Macmillan Survivorship Reseaarch Group, Faculty of Health Sciences, University of Southampton, Southampton, UK, ²Faculty of Health Sciences, University of Southampton, Southampton, UK, ³Southampton Statistical Sciences Research Institute, University of Southampton, Southampton, UK, ⁴Southampton General Hospital, Southampon, UK

Background: Cancer and its treatment can have a considerable long‐term impact. Relatively little is known about what this means in relation to health and well‐being, how to prepare patients for what to expect, and to tailor support. Aims: The aim of this study is to describe the impact of colorectal cancer treatment and patient characteristics including self‐efficacy (confidence to self‐manage illness‐related problems) on symptoms and functioning following curative intent surgery. Methods: Eight hundred fifty‐seven colorectal cancer patients (Dukes' A–C) recruited 2010–2012 from 29 UK centres. Questionnaires pre‐surgery (baseline), 3, 9, 15 and 24 months included assessments of symptoms, functioning and patient characteristics. Regression analyses assessed change in functioning and symptoms over time and associations with socio‐demographic, clinical, treatment and pre‐surgery psychosocial characteristics. Results: Most problematic symptoms over follow‐up: impotence (45% moderate/severe problems at 24 months), urinary frequency (34%), fatigue (24%), stool frequency (22%), insomnia (20%), flatulence (20%) and pain (16%). Symptoms worsened immediately following surgery and then most improved significantly, generally from 15 months, although some remained as prevalent (impotence and flatulence). Urinary incontinence significantly worsened (mostly changes from none to mild symptoms). From multiple regressions, risk factors consistently statistically significantly associated with worse symptoms and poorer functioning were, worse depression and lower self‐efficacy at baseline, more comorbidities and having a stoma. Tumour site, neo‐adjuvant and adjuvant treatment had little effect. Conclusions: Most symptoms improve by 15 months following colorectal cancer treatment although some persist. Pre‐surgery self‐efficacy and depression are important predictors of symptoms and functioning, independent of clinical and treatment factors, and amenable to interventions to improve recovery.

Trajectories of quality of life, health status and personal well‐being up to two years after curative intent treatment for colorectal cancer: results from the UK ColoREctal Wellbeing (CREW) cohort study

Claire Foster¹, Joanne Haviland¹, Jane Winter¹, Chloe Grimmett¹, kim Chivers Seymour², Lynn Batehup², Lynn Calman¹, Dame Jessica Corner², Amy Din¹, Deborah Fenlon², Christine M May¹, Peter W Smith³, Alison Richardson⁴

¹Macmillan Survivorship Reseaarch Group, Faculty of Health Sciences, University of Southampton, Southampton, UK, ²Faculty of Health Sciences, University of Southampton, Southampton, UK, ³Southampton Statistical Sciences Research Institute, University of Southampton, Southampton, UK, ⁴Southampton General Hospital, Southampton, UK

Background: Cancer survivorship is a growing global concern, and the current aftercare system does not sufficiently meet patients' needs; patterns of recovery should be considered in order to tailor aftercare appropriately. Aims: The aim of this study is to examine trajectories of quality of life (QoL), health status and personal well‐being in the first  years following colorectal surgery. Methods: Cohort study of 872 UK colorectal cancer patients. Questionnaires at baseline (pre‐surgery), 3, 9, 15 and 24 months. QoL, health status, personal well‐being, physical symptoms, anxiety, depression, self‐efficacy, social support, socio‐demographic and clinical/treatment characteristics were examined. Longitudinal analyses assessed change in QoL, health and well‐being over time and predictors of trajectories. Results: Four distinct trajectories (groups) were identified for each outcome measure as follows: Group 1: consistently good QoL (31.3%), mild and improving health problems (20.9%) and consistently good well‐being (44.9%). Groups 2 and 3: intermediate and changing levels of QoL, health status and personal well‐being. Group 4: consistently poor QoL (5.3%) and health status (7.4%), very poor/declining well‐being (4.2%). In Group 4, 11.5% were for >1 of the outcomes. Higher pre‐surgery depression and lower self‐efficacy were significantly associated with poorer trajectories for all three outcomes after adjusting for other important predictors including disease characteristics, stoma, anxiety and social support. Conclusions: Distinct recovery trajectories following colorectal cancer treatment can be identified with risk factors. Different approaches to follow‐up care are warranted, and these results provide robust data regarding who is likely to need more intensive support, which will inform the development of risk‐stratified follow‐up management tailored to an individual's need.

A randomized control trial comparing holistic needs assessment with standard care in an outpatient cancer setting: preliminary findings

Jenny Young, Austyn Snowden

Edinburgh Napier University, Edinburgh, UK

Background: Undertaking a holistic needs assessment (HNA) is one way to support a structured discussion of patients' needs. Aims: This study aims to identify (a) how HNA affects the type of conversation that goes on during a cancer consultation and (b) how these changes impact on shared decision‐making and self‐efficacy. Methods: Patients were randomized to experimental or control group. All consultations were audio‐recorded and analysed for dialogue ratio using MEDICODE framework. Post‐consultation of all patients completed a measure of self‐efficacy and shared decision‐making. It was hypothesised that dialogue ratio, self‐efficacy and shared decision‐making would be higher in the HNA (experimental) group. Results: Seven clinicians participated including consultant oncologist, surgeon and clinical nurse specialist. Forty patients participated, and 22 randomised to experimental group, 18 to control. Mean age was 61 years. Fifteen were female, and 25 were male. Top concerns raised in experimental group were physical. The average percentage of conversation initiated by the clinician was higher in the experimental group (exp = 76%: con = 49%). The average percentage of monologue was higher in the control group (con = 65%: exp = 38%). The average percentage of discussion conducted as dialogue was higher in the experimental group (exp = 31%: con = 19%). There were no significant differences in mean self‐efficacy score (exp = 8.1: con = 7.6) or shared decision‐making (exp = 25.95: con = 25.15) scores between the experimental and control arms. Conclusions: Although preliminary, results suggest that the quality of consultation is different according to experimental group. Strengths and weaknesses are discussed.

Walking and talking, together: a mixed‐methods evaluation of a volunteer‐led walking group intervention for women living with and beyond breast cancer (Best Foot Forward)

Richard Kyle¹, Aileen Ireland², Jenny Finnegan‐John³, Claire Knight³, Leanne Taylor‐Sturdy³, Gill Hubbard², Karen Scanlon³

¹Edinburgh Napier University, Edinburgh, UK, ²University of Stirling, Stirling, UK, ³Breast Cancer Care, London, UK

Background: Physical activity aids recovery and rehabilitation after breast cancer diagnosis. Walking groups have been established to encourage physical activity and enhance social support among women living with and beyond cancer. Best Foot Forward (BFF) is a volunteer‐led walking group intervention delivered by Breast Cancer Care. Aims: The aim of this study is to understand the experiences of BFF Walkers and Walk Leaders. Methods: During 2013–2015, a mixed‐methods study was conducted in three sites in England in three phases: (a) questionnaire survey of Walkers (n = 35) and Walk Leaders (n = 13), (b) telephone interviews with Walkers (n = 4) and Walk Leaders (n = 13), (c) walking interviews conducted outdoors and on the move with Walkers (n = 15) and Walk Leaders (n = 4). Questionnaire data were analysed descriptively. Interviews were audio‐recorded, transcribed verbatim and analysed thematically. Results: Both Walkers and Walk Leaders described how the combination of walking and talking was central to the perceived therapeutic and supportive benefit of BFF. Walking and talking, together, enabled conversations during a walk to roam freely between topics and individuals, encouraging everyday and cancer‐related conversation. Physical activity released emotional energy and heightened awareness of treatment side‐effects, especially after entering the café at the end of each walk, that led to conversations women thought would not otherwise occur in sedentary supportive care settings. Conclusions: Walking interventions for women with breast cancer should include time walking outdoors and gathered indoors to encourage the changes in the nature of supportive conversations that were found to result from the transition from outdoor to indoor spaces, and from mobile to sedentary activity.

Identifying research priorities in breast cancer survivorship: a user perspective

Karen Scanlon¹, Jennifer Finnegan‐John¹, Danni Manzi¹, Eila Watson², Jo Brett²

¹Breast Cancer Care, London, UK, ²Oxford Brookes University, Oxford, UK

Background: Most researchers recognise the importance of involving service users in research. However, service users are rarely involved in identifying relevant research topics. Aims: UK charity Breast Cancer Care (BCC), in collaboration with Oxford Brookes University, aimed to identify potential gaps in current knowledge about primary breast cancer from the service user perspective, service user priorities in psychosocial research and areas that users feel Breast Cancer Care should investigate and influence on, as well as areas to develop services in. Methods: A two‐stage multi‐method approach was adopted. From September to December 2014 seven qualitative discussion groups were undertaken with BCC's moving forward service users. Results informed our online survey that was administered through BCC's website in April 2015. Results: Fifty‐three women participated. Five priority research areas emerged from the discussion group analysis: (a) perceived lack of partnership around treatment decisions, (b) perceived lack of partnership between primary and secondary care leading to a lack of continuity of care and signposting to support services available, (c) lack of support for families after diagnosis, through treatment and survivorship, (d) lack of personalised care at diagnosis and beyond (e) and unmet emotional/psychological needs post‐treatment. Results from 583 responses to our online survey will also be reported, with comparisons made to areas of corroboration and disagreement using these different methods. Conclusions: Findings have informed Breast Cancer Care's future research, services and campaigns strategy. Results will also benefit researchers and healthcare professionals in making future decisions about priority areas for research.

Cancer survivorship and liminality: the experience of young women with early‐stage breast cancer

Elaine Wilson

University College Dublin, Dublin, Ireland

Background: Kaiser (2008:81) argues the term ‘survivorship’ fails to capture the uncertainty inherent in the cancer experience. Although there may be an acute phase within the cancer experience, it is not generally viewed as an acute disease. Having come through treatment, many people struggle with how they should define themselves – they occupy a liminal space between illness and health. Aims:: This research explored the concept of survivorship with 25 young women, diagnosed with early‐stage breast cancer. Methods: Two in‐depth qualitative interviews were carried out with each woman – the first as she approached the end of her chemotherapy treatment and the second 6 months later. Within the interviews, the women were free to identify any issues that they felt were significant for them, and the data were analysed using a constructivist grounded theory methodology. Results: The overarching theme that emerged from the research was change – change physically, emotionally and in relationships. Many of the women had not anticipated the changes they experienced as a result of their cancer and felt they no longer knew who they were or how to define themselves. As a result, they struggled to renegotiate their identities and make the transition from treatment to survivorship. Conclusions: This research proposes a specific narrative therapeutic framework that would support young women with early‐stage breast cancer, as well as other cancer patients, as they traverse the liminal space from treatment to survivorship.

Marginalised men with prostate cancer: a qualitative metasynthesis exploring the impact on younger, gay and unpartnered men with prostate cancer

Lauren Matheson¹, Carol Rivas², Johana Nayoan², Richard Wagland², Adam Glaser³, Anna Gavin⁴, Penny Wright⁵, Eila Watson¹

¹Oxford Brookes University, Oxford, UK, ²University of Southampton, Southampton, UK, ³Leeds General Infirmary, Leeds, UK, ⁴Queen's University Belfast, Belfast, UK, ⁵University of Leeds, Leeds, UK

Background: Prostate cancer can have a detrimental impact on men's quality of life, especially sexual, urinary and emotional functioning. As prostate cancer survivors are often older and married, little is known about the unique impact on younger, unpartnered or gay survivors. Aims: We aimed to synthesise existing qualitative research on these three groups of men (younger, unpartnered or gay). Methods: A focused metasynthesis was conducted on qualitative studies that included data on the impacts on either younger (<65 years) (n = 14 papers), unpartnered (n = 11 papers) or gay (n = 7 papers) prostate cancer survivors. This was part of a wider systematic review of qualitative studies (2000 to 2015) investigating the impacts on prostate survivors and their partners (n = 148 papers). Results: Third‐order concepts were developed for the three different groups of survivors. Four overarching themes were constructed: stigma and separateness – relating to men's sense of being isolated and ‘out of sync’; the challenge of renegotiating disrupted identities – illustrating the multiple threats to men's work, home, sexual and social identities; the magnified threat to quality of life: emotional and embodied vulnerability – highlighting how these men have specific support and information needs; disrupting and accelerating the future: an unwanted burden – highlighting the disruption caused to men's futures, including the shadow cast over future relationships and feeling forced into premature old age. Conclusions: This highlights the unique and shared experiences of younger, single and gay prostate cancer survivors. Areas where these potentially more vulnerable survivors may require additional support and information are highlighted.

Supporting young people living with cancer to tell their stories in ways that make them stronger: the ‘Beads of Life’ approach, a thematic analysis of young peoples' experiences

James McParland, Isabella Girling, Sara Portnoy

University College London Hospital, London, UK

Background: ‘Beads of Life’ is an individual and group intervention informed by narrative therapy to enable children and young people to make sense of their cancer journey. Young people attending University College London Hospital are invited to use beads as prompts to tell preferred identity stories and create a safe place to stand from which to ‘story’ their cancer journey. The approach positions young people as experts in their lives and aims to change their relationship with cancer to reduce its negative impact on life. Aims: The aim of this study is to investigate the experiences of young people that have participated in ‘Just Bead It’. Methods: Open‐ended questionnaires were completed by 60 young people that had participated in the programme. Completed questionnaires were analysed using thematic analysis. Results: Two superordinate themes emerged from the data and captured young peoples' experiences as follows.

(1) Within ‘Process of beading’, there were four sub‐themes:

(a) opportunity to acknowledge and recognise support.

(b) sharing experiences, thoughts and feelings through beading.

(c) the future as the focus.

(d) relaxed and calm atmosphere.

(2) Within ‘Discoveries through ’Just Bead It, there were three sub‐themes:

(a) creating a sense of order in the ‘chaos’ of cancer.

(b) remembering who I am.

(c) growing and developing because you are blossoming.

Conclusions: This approach appears to invite in hope and enable young people to reconnect with themselves amongst the chaos of cancer. The presentation will include a description of the approach, and young people who have completed the programme will share their experiences.

The views of healthcare professionals on the care of patients with comorbid serious mental illness and cancer: preliminary findings

James Millman, Karen Galway, Olinda Santin, Joanne Reid

Queens University Belfast, Belfast, UK

Background: Serious mental illness is associated with poorer cancer outcomes. Reasons for such inequalities are not clear, although it appears that those suffering from this comorbidity receive fewer specialist interventions and die earlier than the general population. Further exploratory work is required. Aims: The aim of this study is to explore the experiences of people with serious mental illness and cancer from the perspective of those involved in their care. Methods: Semi‐structured interviews were conducted with fourteen healthcare professionals who worked with patients who had pre‐existing serious mental illness and had received a cancer diagnosis. Interview guides were derived from scoping the literature and feedback from an advisory panel of patients and professionals. Interviews were transcribed verbatim, analysed thematically and data charted with a view to making practice‐focused recommendations. Results: Fourteen professionals were interviewed, comprising oncology nurses, psychiatrists, community mental health professionals and residential support staff. Emerging themes included perceived training needs for oncology and mental health staff outside their respective fields, the role of voluntary sector organisations, communication difficulties between different sectors and the impact of cancer treatment on mental health treatment, such as the incompatibility between chemotherapy and clozapine. Conclusions: Findings will be integrated with findings from interviews with patients. There is a need for increased awareness by mental health professionals of the physical health needs of this client group, and greater understanding of serious mental illness among oncology professionals. Examples of good practice raised involve close liaison between oncology, mental health and the voluntary sector in the care of these clients.

A psychosocial profile of family members in cancer survivorship: what challenges do they face, and what support do they need? A systematic review

Emily R. G. Moffat¹, Peter Hudson², Sam Porter¹, Olinda Santin¹

¹Queen's University Belfast, Belfast, Northern Ireland, UK, ²University of Melbourne, Melbourne, Victoria, Australia

Background: Providing informal care to someone recovering from cancer can negatively impact on a family member's well‐being. A profile of the difficulties family members may face is needed to understand their support needs when treatment has ended. Aim: This study aims to create a comprehensive psychosocial profile of family members in post‐treatment cancer survivorship by identifying the key psychological‐social difficulties and supportive care needs for this group and to provide recommendations for the development of future services. Methods: Relevant studies were identified by systematically searching electronic databases (CINAHL, EMBASE, MEDLINE, PsycINFO and WoS) from inception to October 2015. Quantitative, qualitative and mixed methodology papers were included; the Mixed Methods Appraisal Tool was used to assess methodological quality. Results: Fifty papers, of medium‐high methodological quality, were identified. Most family members report favourable psychological well‐being; however, up to 40% experience clinically evident psychological distress, including elevated anxiety and depression. Approximately 11% lack social support, with negative consequences on their relationships. More than half struggle with intimacy and sexual dysfunction post‐treatment. Ongoing financial difficulties are experienced by approximately 25% of family members. The total economic burden for families can range from @£12 500–£19 500. Approximately two thirds report unmet needs post‐treatment, specifically the need for accessible, tailored support addressing their psychosocial, financial and informational concerns. Conclusion: Cancer has a long‐term impact on patients and families. Family members have unique issues and needs within survivorship but are often overlooked. Their needs should be considered when developing support services, focusing on those at increased risk of psychological distress.

Influences on uptake of cancer screening in mental health service users: a qualitative study

Abigail Clifton¹, Caroline Burgess¹, Sarah Clement¹, Ruth Ohlsen¹, Pras Ramluggun³, Jackie Sturt¹, Paul Walters², Elizabeth Barley¹

¹King's College London, London, UK, ²Bournemouth University and Dorset HealthCare University NHS Foundation Trust, Dorset, UK, ³Oxford Brookes University, Oxford, UK

Background: Increased mortality from cancer in mental health service users (service users) may be associated with low uptake of cancer‐screening tests.

Aims: This study aims to identify factors influencing uptake of bowel, breast and cervical cancer screening for service users. Methods: Individual interview study informed by the Theoretical Domains Framework, with framework analysis and triangulation across participant groups. Participants included 45 service users eligible for cancer screening, 29 mental health professionals and 11 screening professionals from urban and rural locations. Results: Service‐delivery and client‐related barriers and facilitators relevant to difference stages of the screening process include knowledge of screening programmes, knowledge of and attitudes towards mental illness, health service delivery, service user's beliefs and concerns and practical issues. Receipt of invitations or testing kits might be hindered if service users are admitted to hospital or not registered with a general practitioner. Lack of integrated care means mental health staff may not know when patients' tests are overdue and cancer‐screening promotion is not always prioritised. Barriers including information‐processing problems, aggravation of symptoms, poor staff‐client relationships or travel difficulties vary between individuals. Screening professionals demonstrated motivation to help but may lack time or training to do so. Reactive measures need to be requested, which some service users may find difficult. Conclusions: Specific barriers exist to cancer‐screening uptake for service users that prevent equality of care. Primary and secondary care staff and policy‐makers should work together to develop integrated interventions at individual, policy and service‐delivery levels to improve uptake for this population.

Exploring adherence to adjuvant endocrine therapy (AET) following treatment for breast cancer

Jo Brett¹, Eila Watson¹, Mary Boulton¹, Debbie Fenlon², Nick Hulbert Williams³, Peter Donnelly⁴, Fiona Walter⁵, Bernadette Lavary⁶, Adrienne Morgan⁷, Carolyn Morris⁸

¹Oxford Brookes University, Oxford, Oxon, UK, ²University of Southampton, Southampton, Hampshire, UK, ³University of Chester, Chester, Cheshire, UK, ⁴South Devon NHS Foundation Trust, Torquay, Devon, UK, ⁵University of Cambridge, Cambridge, Cambridgeshire, UK, ⁶Oxford University NHS Hospitals Trust, Oxford, Oxon, UK, ⁷Independent Patient Cancer Voice, London, UK, ⁸National Cancer Research Institute, London, UK

Background: Suboptimal adherence to adjuvant endocrine therapy (AET) after breast cancer has been widely reported. Low adherence to AET comes with consequent increased risk of cancer recurrence and mortality, reduced QALYs and increased medical costs. The aim of this study was to explore factors affecting adherence and non‐adherence to AET following breast cancer to inform interventions to support women with long‐term use. Methods: Women prescribed AET after breast cancer were recruited 2 to 4 years after initiating treatment. Thirty‐two semi‐structured interviews were conducted with non‐adherers (n = 13) and adherers (n = 19). Digital recordings were transcribed verbatim and analysed using the Framework Approach. The analysis was underpinned by the Necessity‐Concerns Framework (Horne 2013) Results: Non‐adherence was influenced by unmanaged side‐effect profile, lack of support and follow‐up to promote continued use, lack of belief in the merits of taking AET for 5 years, misunderstanding around the importance of continuous use, concerns over ongoing toxicity of drugs following chemotherapy and/or radiotherapy regimens and influence of negative views from friends, family and online forums. Adherence was influenced by limited impact of side‐effect profile on daily life, trust in health professionals initiating treatment, feeling supported in ongoing AET therapy, good knowledge of reasons for ongoing AET therapy, influence of family and friends in importance of ongoing AET therapy. Conclusions: Reasons for adherence or non‐adherence to AET are variable and complex. Interventions are required to ensure women are well informed and supported to continue with AET where appropriate, thereby reducing breast cancer‐related morbidity and mortality.

Comparing hospital and telephone follow‐up for women treated for endometrial cancer (ENDCAT trial)

Kinta Beaver¹, Susan Williamson¹, Chris Sutton¹, William Hollingworth³, Anne Gardner², Anne Tomlinson², Patrick Keating², Pierre Martin‐Hirsch²

¹University of Central Lancashire, ²Lancashire Teaching Hospitals NHS Foundation Trust, ³University of Bristol

Background: Evidence suggests that routine follow‐up for early‐stage endometrial cancer has little benefit in terms of survival or detection of recurrent disease. Hospital‐based approaches to follow‐up are practically and economically unsustainable. The National Cancer Survivorship Initiative recommended evaluating alternative approaches. Endometrial cancer telephone follow up trial (ENDCAT) aimed to demonstrate that nurse specialists had the skills and expertise to provide follow‐up care using a telephone intervention. Methods: A non‐inferiority‐randomised controlled trial compared standard hospital follow‐up (HFU, control) and nurse‐led telephone follow‐up (TFU, intervention). Two hundred fifty‐nine women treated for Stage I endometrial cancer were recruited. Outcomes included psychological morbidity (State Trait Anxiety Inventory), patient satisfaction with information and service, quality of life European organisation for research and treatment of cancer (EORTC QLQ‐C30 and EN24) and time to detection of recurrence. The intervention included questions on physical, psychological and social aspects of care. Results: Telephone follow‐up was not inferior to HFU in terms of psychological morbidity. High levels of satisfaction with information and service were evident in both groups; quality of life was also similar between groups. Recurrences were few (n = 10), and all were symptomatic, with no differences in time to detection of recurrence between groups. Conclusions: Nurse specialist TFU is an effective alternative to HFU for early‐stage endometrial cancer with no physical or psychological detriment to patients.

This abstract presents independent research funded by the National Institute for Health Research under its Research for Patient Benefit Programme (Grant Reference Number PB‐PG‐0610‐22123). The views expressed are those of the authors and not necessarily those of the National Health Service, the National Institute for Health Research or Department of Health.

Poster presentations

Seeking consensus from staff and patients on appropriate patient‐reported outcome (PRO) items for radical prostate patients in the eRAPID (Electronic patient self‐Reporting of Adverse‐events: Patient Information and aDvice) project: a Delphi study

Patricia Holch¹, Marie Holmes¹, Zoe Rogers¹, Susan Davidson², Jacki Routledge², Ann Henry³, Kevin Franks³, Alexandra Gilbert¹, Galina Velikova¹

¹University of Leeds, Leeds, West Yorkshire, UK, ²The Christie NHS Foundation Trust, Manchester, Lancashire, UK, ³Leeds Teaching Hospitals NHS trust, Leeds, West Yorkshire, UK

Background: The male pelvic questionnaire (MPQ) was selected for radical prostate patients to self‐report toxicity by mapping symptoms against existing PRO measures. However, the MPQ did not cover hormonal, sexual or emotional functioning in‐depth. Aims: The aim of this study is to reach consensus on appropriate items to augment the MPQ from a pool of PRO measures European Organisation for Research and Treatment of Cancer Quality of life questionnaire (EORTC‐QLQC‐30, PR‐25, FACT‐G& P, EPIC, SF‐36) and own‐developed items (eRAPID). Methods: Forty‐five participants (20 patients and 25 staff) from St James's Institute of Oncology in Leeds and the Christie Hospital Manchester ranked items over three rounds related to 12 symptoms via an online survey tool. Where 60% (round 1) and 55% (round 2) consensus was not achieved, the two highest options and a summary of comments were presented back to participants informing future choices. Results: Consensus was reached for 4/12 items in round 1 (range 62–77%) including weight gain, relationship/social impact, to include questions on orgasm (68%) and frequency of erections (56%). In round 2, consensus was achieved on the remaining eight items including depression, performance status and fatigue (range 89–55%). In round 3, 57% of patients and 77% of staff thought sexual items should be reported quarterly; however, 43% of patients suggested monthly, weekly reporting was deemed unnecessary. Overall EORTC and eRAPID items were preferred because of brevity and relevance to patients; agreement proved difficult for similarly worded items. Conclusions: The MPQ is now adapted with additional items endorsed by patients and staff to be utilised in a future pilot study to evaluate the eRAPID intervention.

Returning home: psychosocial care during the re‐entry phase of cancer survivorship in rural communities

Jan Pascal

Bishop Grosseteste University, Lincoln, UK

Background/aims: This paper highlights gaps in psychosocial care for cancer survivors in rural communities and is based upon a study conducted in rural Victoria, Australia. Current Australian clinical guidelines on psychosocial care for people with cancer indicate the need for the provision of formal psychosocial care. Nonetheless, participants in this study largely cared for themselves or received informal support from family, friends and community members. Methods: Twenty people with various stages of cancer progression, cancer diagnoses and survival times were recruited to participate. Semi‐structured qualitative interviews focused on participants experiences of psychosocial care and were audio‐recorded and transcribed verbatim. Data were thematically analysed to identify key themes using Heideggerian phenomenological interpretation. Results: Findings demonstrate that psychosocial care is essentially informal within the re‐entry period after cancer diagnosis and treatment. Participants created self‐care techniques and were assisted by family and friends. Many psychosocial needs remained unmet (or even exacerbated) and, significantly, professional support was lacking, with participants describing the re‐entry phase representing a ‘void’ of professional care. Conclusions: The findings have implications for integrated treatment protocols and discharge planning, rural health inequalities and the long‐term well‐being of cancer survivors living in rural communities. A possible means of ameliorating the ‘void’ is though participatory processes. A coproduction model for understanding the experience of formal supportive care during the re‐entry phase of survivorship is thus proposed. Working together, people, professionals and programmes could help overcome the distress and difficulties encountered when cancer survivors re‐enter rural communities.

Conceptualising Iatrogenic uncertainty: an integrated perspective

Jan Pascal, Olivia Sagan, Graham Basten

Bishop Grosseteste University, Lincoln, UK

Background: At the point of cancer diagnosis, practitioners may wrestle with dilemmas associated with medico‐legal implications of diagnosis, treatment options and disclosure to family members. Post‐diagnosis patients' perspectives can diverge, focusing instead on questions about the meaning and purpose of life, including managing long‐term interactions with health and mental health practitioners. Such interactions can create iatrogenic uncertainty, where treatment and follow up‐protocols reignite distress and serve to represent the fragility of survivorhood status. Aims: Our paper explores opportunities for integrated cancer care protocols across multidisciplinary teams. We outline ways psychologists, social workers and medical scientists can ameliorate, or work with, iatrogenic uncertainty to improve follow‐up and discharge ‘compliance’, thereby enhancing emotional well‐being for cancer survivors. Methods: The three researchers contributing represent both qualitative and quantitative approaches and are involved in three different disciplines of health inquiry. Together, we have undertaken a meta‐analysis of our original data, and these analyses have been brought together to form a corpus from which the findings in this paper derive. Results: Iatrogenic uncertainty was present regardless of cancer stage or diagnostic type, pervaded throughout length of survival and focused on the experience of anxiety about recurrence and metastatic disease. In particular, participants reported iatrogenic uncertainty induced by tests and treatment with surveillance regimes underscoring mortality awareness. Conclusions: Our findings have implications for psychology, social work and medical and allied health practitioners and could enhance the design of discharge plans and follow‐up protocols for cancer survivors.

Assessment of psychological distress in cancer patients: a strong pillar for clinical interview

Ravin H Silva, Shahid Gilani, Caroline O'Donovan Cancer Centre, University Hospital of North Midlands, Staffordshire, UK

Introduction: Newly diagnosed cancer patients or those undergoing cancer treatment, frequently suffer from psychologically distressing symptoms including stress, anxiety and depression. An important aspect of managing cancer patients is finding them out. Recently, National Institute for Health and Care Excellence issued guidelines related to them. Aims: The aim of this study is to find out incidence of psychologically distressing symptoms among newly diagnosed cancer patients and to know how they are being handled. Methods: All newly diagnosed cancer patients attending Cancer Centre University Hospital North Midlands (UHNM) for radiotherapy assessment and treatment from April to June 2015 were included. Edmonton Symptom Assessment System (revised version) was used to collect data. Standard statistical tests were applied. Results: Total 36 patients were assessed according to assessment scale, and 15 were found depressed (41.67%); 21 patients were found having anxiety (58.33%), and 12 were experiencing pain (33.33%). Out of 15 patients having depression, only one patient was addressed and referred. Out of 21 patients having anxiety, only one patient was addressed and referred. Out of 12 patients who were experiencing pain, 10 were assessed for further pain management. Psychologically distressing symptoms were common but rarely addressed in these patients. Conclusion: Our study showed that psychologically distressing symptoms were common and many a times hidden among cancer patients. In majority of these patients, such symptoms were not addressed on their first visit. These problems need to be addressed so that appropriate referral to psychological care can be made. By applying validated screening tools, these patients can be screened and referred easily, but it needs to raise awareness among medical community.

Development of a physical activity behaviour change intervention for cancer survivors

Sadia Nafees, Nefyn Willaims, Rhiannon Edwards, Clare Wilkinson

Bangor University, Wrexham, UK

Although positive effects of physical activity in cancer survivors are well established, survivors are often not active enough to benefit. Exercise referral schemes are under‐used by cancer survivors, largely because of lack of referral. A physical activity promotion pack, ‘MoveMore’, was developed by Macmillan in 2011, followed by a campaign to promote it to all cancer survivors in Wales. The aim of this project was to develop a behaviour change intervention to reinforce the ‘MoveMore’ message and promote physical activity for cancer survivors. Following the Medical research council (MRC) framework, a systematic review was conducted to determine the effectiveness of physical activity education materials; a literature review identified relevant theory to underpin the proposed intervention, and focus groups explored cancer survivors' views about physical activity advice and informed the refinement of the intervention. Finally, a survey of health professionals explored knowledge and beliefs about promoting physical activity to cancer survivors. The systematic review findings indicated that education materials may increase physical activity levels in cancer survivors. Furthermore, reinforcement based on behaviour change theories complements it. Focus groups participants wanted consistent, tailored and face‐to‐face physical activity advice as part of their standard care. The survey confirmed the focus group findings. Physical inactivity in cancer survivors needs addressing to improve quality of life. The proposed 12 weekly text message reinforcement intervention to promote physical activity in cancer survivors may be beneficial if integrated into existing health services. The feasibility of the proposed intervention can be tested in a pilot trial as a future research work.

More questions than answers: a systematic mixed studies literature review of the psychological impact of undergoing active surveillance for low‐risk prostate cancer

Eimear Ruane‐McAteer, Sam Porter, Joe O'Sullivan, Gillian Prue

Queen's University Belfast, Belfast, UK

Background: Frequently, men with prostate cancer are diagnosed with low risk disease. Active surveillance (AS) allows these men to postpone or avoid the adverse side effects associated with curative treatment until the disease progresses, although this uncertainty can create an additional emotional burden. Aim: The aim of this study is to determine the psychological impact of AS to inform future study in this area and to provide recommendations for clinical practice. Methods: Relevant studies were identified through an electronic database search using specified keywords from inception to September 2015. As both quantitative and qualitative studies were included, the Mixed Methods Appraisal Tool was used to assess methodological quality. Results: Twenty‐three papers were included (20 quantitative and 3 qualitative). Papers were generally of low methodological quality. AS patients appeared to report favourable psychological well‐being, with only a small proportion reporting psychological dysfunction. Factors associated with increased anxiety and depression included lack of a partner, impaired mental health and neurotic personality. Increased role of the physician influenced anxiety and uncertainty. Ability to manage intrusive thoughts appeared to reduce distress. Conclusion: Because of inappropriately timed baseline measures, inappropriate or lack of comparison/control groups and insufficient sample size, the conclusion that AS has minimal impact on psychological well‐being may not be a true reflection of the AS experience. Further research should seek to address these limitations, and practitioners should be aware that despite medical benefits of AS, patients of a certain demographic profile may require additional support during their time on AS.

Investigating recovery following lung cancer radiotherapy: testing the feasibility of establishing a prospective cohort

Lynn Calman¹, Alison Richardson³, Peter Smith⁴, Janis Baird², John Edwards⁵, Corinne Faivre Finn⁶, Claire Foster¹

¹Macmillan Survivorship Reseaarch Group, Faculty of Health Sciences, University of Southampton, Southampton, UK, ²University of Southampton, Faculty of Medicine, Southampton, UK, ³Southampton General Hospital, Southampton, UK, ⁴University of Southampton, Social Statistics & Demography Social Sciences, Southampton, UK, ⁵Sheffield Teaching Hopsitals NHS Foundation Trust, Sheffield, UK, ⁶University of Manchester, Manachester, UK

Background: Little is known about support needs and patterns of recovery among lung cancer patients treated with curative intent radiotherapy, making it difficult to target services most effectively. Lung cancer patients are poorly represented in psychosocial literature; they have relatively low survival rates, are elderly, present with comorbidities and have high symptom burden, and incidence is higher for those living in the most deprived areas. For these reasons, they are deemed as difficult to recruit and retain in studies. Aims: This study aims to test the feasibility of establishing a longitudinal cohort of lung cancer patients. Methods: Eligible patients having radiotherapy between October 2015 and April 2016 at six UK centres will be recruited into a prospective, longitudinal cohort study. Participants will complete questionnaires, including quality of life, recovery, well‐being, before treatment and 3 months later. Participants’ clinical details are also collected. Study procedures will be evaluated using semi‐structured interviews with patient participants and local site staff. Results: We will assess the feasibility of recruiting and retaining patients for the duration of the study. Feasibility assessment will also be informed by interview data gathered on the acceptability of the study procedures, the questionnaires and the methods for gathering medical details. Conclusion: This feasibility testing will inform a large cohort study of patients undergoing treatment with curative intent (radiotherapy and surgery); we plan to follow patients for a number of years. This novel approach will enhance our ability to offer patients appropriate and timely support and identify who is most at risk of protracted recovery.

YoDA BRCA: views and experiences around genetic testing for young women with breast cancer: developing a decision aid

Chloe Grimmett¹, Charlotte Brooks¹, Alex Recio‐Saucedo¹, Ramsay Cutress², Ellen Copson², Gareth Evans³, Sue Gerty², Ann Armstrong⁴, Lesley Turner⁵, Shelley Mason⁵, Munaza Ahmed⁶, Bryony Eccles², Diana Eccles⁷, Claire Foster¹

¹Macmillan Survivorship Research Group, Faculty of Health Sciences, University of Southampton, Southampton, UK, ²Cancer Sciences, University of Southampton, Southampton, UK, ³Genetic Medicine, University of Manchester, Manchester, UK, ⁴Christie Hospital NHS Trust, Manchester, UK, ⁵Patient and Public Involvement, Southampton/London, UK, ⁶Wessex Clinical Genetic Service, Southampton, UK, ⁷Clinical Trials Unit, University of Southampton, Southampton, UK

Background: Younger women diagnosed with breast cancer are more likely to have inherited genetic mutations. Rapid access genetic testing at the time of diagnosis is not standard practice but is becoming increasingly common in the UK in order to identify gene carriers and facilitate early risk reducing surgery in addition to management of the presenting tumour. Information about genetic testing aimed at these women is often unavailable outside of specialist regional genetics services and decision aids (DA) can support women to make informed choices. Aim: This study aims to explore the views and experiences of young women about genetic testing and their information preferences to inform the development of a web‐based DA. Methods: Participants (≤50 year and within 18 months of diagnosis) were recruited from two National Health Service hospitals and interviewed using a semi‐structured format. Purposive sampling was used to ensure inclusion of women with a range of different characteristics relating to genetic testing. Verbatim transcripts were interrogated using a framework approach. Results: Preliminary analysis identified the following themes with corresponding sub‐themes: concerns about the implications of genetic testing for family members; a desire for knowledge about the processes and implications of testing and a preference for clear and ‘jargon‐free’ information. Complete study findings will be presented. Conclusion: Findings from the interviews will be used to develop a web‐based DA, providing young women with the support they require when making a choice about whether or not to have genetic testing. The DA will endeavour to enhance understanding, reduce uncertainty and support decision‐making.

‘I thought there is no way they could take this on’; an exploration of gatekeeping in palliative care

Jenny Young, Austyn Snowden

Edinburgh Napier University, Edinburgh, UK

Background: Gatekeeping refers to the process where healthcare providers prevent access to eligible patients for research recruitment. It is a common issue, particularly in research involving people considered as vulnerable, such as palliative care. It has been argued that gatekeeping is unethical. Nevertheless, gatekeeping persists. Therefore, a deeper understanding is needed. Aim: The aim of this study was to develop a typology of gatekeeping behaviour in order to systematically mitigate it. Methods: A focus group methodology was chosen to provide insight into the range of ideas and feelings related to the experience of recruiting patients into a research study. The literature was searched for research into gatekeeping, and a provisional typology of gatekeeping was formed. Two focus groups were then conducted with nine qualified hospice community nurses involved in recruitment to a trial in palliative care. Both groups were audio‐recorded, transcribed verbatim and then analysed using the framework analytic process. Results: Two main themes were identified. They were ‘low priority’ and ‘active disengagement’. This supports our proposed typology of gatekeeping behaviour. Justification ranged from unease at the research process, to deliberately not inviting individuals to participate for fear of burdening them. Conclusion: Gatekeeping is a common clinical response, which at times can be entirely appropriate. The typology presented here allows for targeted action and discussion at various points during the research process to potentially mitigate inappropriate gatekeeping behaviour.

A well‐being event for women following endometrial cancer treatment

Anuska Randolph², Andreia Fernandes¹

¹The Royal Marsden NHS Foundation Trust, LONDON, UK, ²The University of Surrey, Guildford, UK

Endometrial cancer is the most common gynaecological malignancy. Higher BMI is linked with worse physical, role and social functioning. Being overweight causes an increase risk of depression, and depression increased the odds of developing obesity. Long‐term endometrial cancer patients note the impact of cancer on their quality of life. The end of treatment is a time where patients report feeling abandoned after treatment and patients are unaware of where to seek additional support and information. This may be a key time for an individual to progress from pre‐contemplation to contemplation when considering positive lifestyle changes. Well‐being events can be crucial in supporting self‐management of the consequences of cancer. A well‐being event was designed based on social cognitive theory, which included sessions on physical activity, diet and psychological well‐being. All women who attended a follow‐up appointment for endometrial cancer within the last 2 years were invited. Women were given the choice to bring a friend/relative and were provided with a personalised information pack. A total of 52 women attended. Seventy per cent of women were aged between 51 and 70 years, and the BMI ranged from 19 to 50.5. Most women have found the day quite or very helpful (84%), and 94% have learned new information. As a result, 72% of women intended to make a lifestyle change. Women noted that this event was supportive, encouraged positive change, helped accept feelings and identified importance of meeting others. To our knowledge, this was the first well‐being event aimed exclusively at women with endometrial cancer.

Predictors of cancer rehabilitation in head and neck cancer patient: role of treatment duration, depression, affective states, locus of control and social support

Ravindra Singh¹, H.S. Shukla¹, Yogesh Kumar Arya², Mallika Tewari¹, Tushar Singh²

¹Department of Surgical Oncology,Institute of Medical Sciences, Varanasi, India, ²Department of Psychology, Banaras Hindu University, Varanasi, India

Background/purpose: Cancer is a major cause of death not only in developed countries but also in developing countries such as India. Although it is reported that the course of treatment for cancer patients profoundly affect their quality of life, there is a clear lack of studies exploring the effect of course of treatment with some other psychosocial variables on the quality of life of cancer patients in India. The present study is an attempt in this direction. Method: In a cross‐sectional design, 30 head and neck cancer patients (10 each from 6 months, 1 year and two rears of treatment) attending outpatient at hospital were administered Cancer Rehabilitation Evaluation System–short form (SF), SF‐36 Quality of Life Scale, Positive and Negative Affect Schedule, Social Support Questionnaire, GDS‐SF Depression Scale, Perceived Locus of Control and some questions to measure their demographic and smoking and drinking habits. RESULTS: Results revealed that there is a significant improvement in some aspects of their quality of life over the course of treatment. The decrease in quality of life is closely related to increasing in alcohol and tobacco use, as well as positive mood and internal locus of control, which show greater improvement in the quality of life than their counterparts. Further depression is found to be negatively related to the quality of life. CONCLUSION: To conclude, results of this study indicate that the effect of treatment on cancer rehabilitation is highly dependent on the psychosocial factors and these factors thus need to be integrated into the cancer treatment system.

Understanding and addressing potential barriers and facilitators to adherence to a swallowing exercise intervention for patients with head and neck cancer: the SiP study

Emma King¹, Mary Wells¹, Nick Hulbert‐Williams², Joanne Patterson³, The SiP Team Tayside, Lothian, Fife, and Forth Valley⁴

¹The University of Stirling, Stirling, Stirlingshire, UK, ²The University of Chester, Chester, Cheshire, UK, ³The University of Newcastle, Newcastle, Newcastle‐Upon‐Tyne, UK, ⁴NHS Tayside, Lothian, Fife and Forth Valley, Scotland, UK

Background: Swallowing problems are a common side effect of radiotherapy treatment for head and neck cancer (HNC) and can have devastating long‐term effects. There is evidence to suggest that exercises targeting the swallowing muscles can improve long‐term outcomes and reduce the use of enteral feeding tubes; however, such exercises are challenging for patients and questions remain about the feasibility and acceptability of a preventative swallowing exercise programme, to which adherence is key. Aims: This feasibility study seeks to identify the optimal characteristics of a patient‐focused, practical and evidence‐based Swallowing Intervention Package (SiP), to understand the barriers and facilitators to adherence and fidelity to the SiP and to examine the feasibility of the SiP for patients and HNC teams. This paper will report on the development of the SiP through patient focus groups and staff consensus activities, with a particular focus on adherence and fidelity. Methods: Focus groups were carried out with patients who had undergone radiotherapy for HNC, and their carers. A consensus day was held with staff involved in the project, and patient/academic advisors. Findings were used to develop the SiP and to underpin methods of assessing beliefs and adherence to the intervention. Conclusions: The SiP is currently being tested in a feasibility study and includes written information, videos and practical tools to encourage adherence. Diary cards and a Rehabilitation Interventions Beliefs questionnaire have been developed to assess barriers and facilitators to adherence. A staff manual draws on the behaviour change taxonomy to support participants and encourage fidelity.

Real‐time electronic patient outcome reporting of adverse events: is it feasible in UK cancer trials? Findings from a proof‐of‐principle study

Fiona Kennedy¹, Beverly Clayton¹, Kate Absolom¹, Elaine O'Connell Francischetto², Louise Flintoff³, Katie Gordon¹, Will Crocombe¹, Robert Cicero¹, Vicky Hiley¹, Leon Bamforth¹, Jane Blazeby², Julia Brown¹, Galina Velikova¹

¹University of Leeds, Leeds, UK, ²University of Bristol, Bristol, UK, ³University Hospitals Bristol NHS Foundation Trust, Bristol, UK

Background: Adverse events (AEs) reporting is essential in clinical trials. The current system for reporting (Common Toxicity Criteria and Adverse Events) relies on clinicians' interpretation of symptoms. The value of patient self‐reports is recognised, but robust data collection methods are needed. AIMS: REPORT‐UK (Real time electronic patient outcome reporting of adverse events) is a proof‐of‐principle study that aims to develop and evaluate a system for self‐reporting AEs and Patient Reported Outcome Measures during trials using the internet and/or interactive voice response (IVR) telephone system. Methods: Varied diagnosis cancer patients undergoing treatment were recruited. Consenting patients chose between internet and IVR. For 12 weeks patients are reminded (text/email) to complete weekly AEs and monthly Patient Reported Outcome Measures (EORTC‐QLQ‐C30). Acceptability is measured by recruitment rates, attrition, compliance and patient/staff feedback. Results: Between August 2014 and October 2015, 249 participants were recruited (48% consent), with system preference being 83% internet/17% IVR. To date, 232 participants have completed, and 179 returned end‐of‐study questionnaires. Only 13 participants have actively withdrawn; four have died, and 20 passively withdrawn (i.e. not completed since baseline). Overall patient compliance is high (75% completing more than 60% of expected weekly AEs), although this may be lower amongst IVR users. Both systems are perceived as easy to use. Time to complete is perceived acceptable, although actual times indicate the internet is quicker (10 min vs 24 min). Conclusions: The study demonstrates a user‐friendly electronic data collection system, which will provide information on patient compliance and could be implemented in practice in clinical trials alongside traditional approaches to improve data quality and safety.

Patient and relatives attitudes to the implementation of eRAPID (Electronic patient self‐Reporting of Adverse‐events: Patient Information and aDvice) during and after pelvic radiotherapy: a qualitative interview study

Marie Holmes¹, Patricia Holch¹, Zoe Rogers¹, Sarah Dickinson¹, Susan Davidson³, Jacki Routledge³, Ann Henry², Kevin Franks², Alexandra Gilbert¹, Galina Velikova¹

¹University of Leeds, Leeds, UK, ²St James's Institute of Oncology, Leeds, UK, ³The Christie NHS Foundation Trust, Manchester, UK

Background: Electronic patient self‐Reporting of Adverse‐events: Patient Information and aDvice (eRAPID) is an electronic self‐report, severity linked management system incorporating patient‐reported outcomes within routine cancer care. The system has proven acceptable to patients undergoing systemic therapy, and eRAPID is being developed for pelvic radiotherapy patients. Aim: The aim of this study is to explore patient and relative views on acceptability, timing and utility of eRAPID for pelvic radiotherapy patients at St James's Institute of Oncology, Leeds Method: Thirty‐two semi‐structured audio‐recorded interviews were conducted with n = 29 (n = 20 males, n = 9 females) prostate, cervical, anal, rectal cancer patients and relatives during and 6 weeks post radiotherapy. Interviews were transcribed, coded utilising thematic analysis and managed in NVivo. Results: Under the main theme ‘benefits of eRAPID’, 52% of patients thought eRAPID could enable ‘patient coping and follow‐up’ ‘It sounds like a good idea to me, to be able to access something at home that might give you peace of mind…’; and 26% suggested ‘improved patient‐doctor communication’ ‘I think that any dialogue has got to be good…between patient and doctor in any case. You've got a direct link there, so I think it's perfect’. Twenty‐two cited possible improved ‘information provision and delivery’ similarly 22%, thought eRAPID useful for an ‘out of hours information source’ ‘very useful…in the night when you need to report something’. Relatives agreed that it would ‘open channels of communication’ (67%) and ‘increase the quality of information provided’ (83%). Conclusion: Findings informed development of a pilot study to evaluate eRAPID alongside pelvic radiotherapy patients and suggest that eRAPID would be acceptable and beneficial to patients.

‘Too young to die’: psych‐oncology in children, adolescents and young adults

Mike Groszmann, Jane Elfer, Georgina Fozard

University College London Hospital, London, UK

Adolescent and Young Adult Psych‐Oncology team will explain the ways that ideas from psychiatry, existential philosophy and psychotherapy; psychodynamic theory, cognitive behavioural therapy and systemic theory can all be integrated to understand and work with the experiences and difficulties of young people struck down by cancer during adolescence and young adulthood. People diagnosed with cancer and facing their mortality at such an unnaturally young age face particular challenges, and we endeavour to help them through these difficult times. We will present a case study, which illustrates the particularly complex ethical considerations that can arise in this work. We will also use the case to explore the way; themes such as identity, loneliness, facing death and roles within families might play out in adolescent patients with cancer. We will end with questions and a discussion.

Healthcare professional (HCP) attitudes to the implementation of eRAPID (Electronic patient self‐Reporting of Adverse‐events: Patient Information and aDvice) during and after pelvic radiotherapy: a qualitative interview study

Zoe Rogers¹, Patricia Holch¹, Marie Holmes¹, Susan Davidson², Jacki Routledge², Ann Henry³, Kevin Franks³, Alexandra Gilbert¹, Sarah Dickinson¹, Galina Velikova¹

¹University of Leeds, Leeds, UK, ²The Christie NHS Foundation Trust, Manchester, UK, ³Leeds Teaching Hospitals NHS Trust, Leeds, UK

Introduction: Electronic patient self‐Reporting of Adverse‐events: Patient Information and aDvice (eRAPID) is an online self‐report symptom management system incorporating patient‐reported outcomes into electronic patient records and routine cancer care. The system has proven acceptable to patients undergoing systemic therapy, and we aimed to extend the developmental work to inform the design of the system for patients receiving pelvic radiotherapy. Aim: This study aims to assess healthcare professional views on the acceptability, timing and the potential utility of eRAPID for prostate, cervical/vulval and anorectal patients across two National Health Service Trusts, St James's Institute of Oncology in Leeds and the Christie Hospital, Manchester. Methods: Twenty‐four semi‐structured audio‐recorded interviews were conducted with clinical oncologists, nurse specialists, radiographers and managers. Interviews were transcribed, coded and managed in NVivo, and thematic analysis was employed. Results: Emergent themes included the potential for eRAPID to complement radiographer‐led toxicity assessment (particularly post radiotherapy) and improved reporting of sexual problems and monitoring for signs of recurrence. Practicalities for implementation included the need for patient‐reported outcomes to be visible both in the electronic patient records and treatment management system. Further applications of the eRAPID system included delivering patient information on enema/bladder filling for prostate patients, vaginal dilators for cervical/anal patients and specialist advice for those undergoing brachytherapy. Conclusions: Staff was overwhelmingly positive about eRAPID and highlighted the novel ways the system could address the specific needs of radiotherapy patients, particularly (a) tailoring timely information provision, (b) improving toxicity tracking and management post treatment and (c) facilitating discussion of sensitive issues in consultations.

Lay perceptions of gynaecological cancer and follow‐up care preferences

Val Morrison, Ikesha Asante, Chin Lee, Laura Timmis

Bangor University, Bangor, Wales, UK

Background: Fifty per cent of us will be affected by cancer in our lifetime. Lay understanding of gynaecological cancers is relatively low, yet their incidence and impact is significant. Five‐year survival rates range from 21% (ovarian) to 61% (endometrial), which leaves many women who do not survive. Current standard care following treatment includes 5 years of consultant led follow‐up in order to detect any cancer recurrence and manage any physical or psychological morbidities. Evidence exists that follow‐up itself can create anxiety for patients and families, with some asking for alternative models of care. In order to better inform health communications and healthcare, greater understanding of the perceptions and expectations of care held by hypothetical future patients and carers is required. (A parallel study explores perceptions of current gynaecological patients and carers.). Aims: We seek to understand the preferences of potential future patients and informal caregivers for gynaecological cancer after‐treatment care, and personal and psychosocial influences thereon. Methods: A cross‐sectional survey will be administered to staff and students of a local university. Consented individuals will join one of three survey completion sessions, each conducted with approximately 50 individuals. The survey will assess personal characteristics (age, gender, self‐rated health, cancer experience, dispositional optimism (Life Orientation Test)), cancer perceptions (Brief Illness Perception Questionnaire) and preferences for care (using a discrete choice experiment). Results: Survey administration is scheduled for November and December 2015, with analysis January–February 2016. Conclusions: We anticipate that results will usefully inform communications around future gynaecological cancer care, and an ongoing feasibility trial of new care pathways.

Assessing the information and support needs of radical prostate cancer patients and acceptability of a group based treatment review: a questionnaire and qualitative interview study

Munisha Ghattaure¹, Catherine Holborn², Patricia Holch³

¹Leeds Teaching Hospital, Leeds, West Yorkshire, UK, ²Sheffield Hallam University, Sheffield, South Yorkshire, UK, ³University of Leeds, Leeds, West Yorkshire, UK

Background: Currently, the information and support (IAS) needs of radical prostate (RP) cancer patients remain unmet resulting in a negative impact on quality of life. To deliver ‘patient‐centred’ care, it is important that radiotherapy departments explore patient views on the timing, delivery and content of IAS. Aims: The aim of this study is to establish the effectiveness of current/service for patient IAS need, identify opportunities for service improvement, particularly the value of group‐based treatment review (GBTR). Methods: Using mixed methods n = 60 participants completing RP treatment in St James's Institute of Oncology, Leeds completed a cross‐sectional self‐designed questionnaire relating to IAS. Eleven per cent (n = 7) took part in a semi‐structured qualitative interview assessing views on GBTR. Descriptive statistics were computed in spss; interviews were transcribed, coded and analysed thematically. Results: Eighty‐seven per cent of patients were satisfied with the IAS; however, 26% were only ‘sometimes’ able to complete bladder filling, suggesting information regarding treatment delays would improve this. Forty‐nine per cent preferred both Doctor and Urology nurse (UN) reviews, whereas 26% preferred UN only. Seventy per cent stated their ‘concerns were always addressed’ by a UN and 49% by a Doctor. Seventy‐one per cent of patients found a GBTR acceptable emphasising the advantage of peer support, for example, ‘I think patients would get support from other people’. Others felt it inappropriate when discussing ‘sex life or impotence’. Conclusions: Patients were mainly satisfied with the IAS. Suggestions for improvements, including information on treatment, side effects and delays, will be translated into patient‐centred care. Future work will evaluate the GBTR in a pilot study with RP patients.

Comprehensive systematic review of insomnia treatments for people being treated for curable cancer

Kevin H. Hochard, Kim Burger, Nicholas J. Hulbert‐Williams

University of Chester, Chester, UK

Background/purpose: Insomnia is difficulty faced by many oncology patients, impacting negatively on health outcomes, distress and quality of life. We systematically reviewed literature evaluating the effectiveness of psychological and complementary/alternative behavioural therapies for the treatment of insomnia in patients treated for potentially curable cancer. Methods: Methodology followed preferred reporting items for systematic reviews and meta‐analyses guidelines. Searches of PsycInfo, Pubmed, and Web of Science (1980 to 2014) yielded 3386 articles. Following deduplication and inclusion screening, 20 studies were found to meet all inclusion criteria and importantly included a control condition in their design. Extraction of treatment outcome data focused on both objectively measured psycho‐physiological outcomes and self‐reported psychosocial outcomes, including changes in sleep, distress and quality of life. Results: The included studies tested interventions informed by cognitive behavioural therapy, mindfulness, relaxation, yoga, quigong and physical exercise. Overall, the treatment arm consistently produced significantly improve sleep, quality of life and mood, although we raise questions about the validity of chosen control conditions. Effects sizes are strongest for cognitive behavioural therapy for insomnia (CBT‐I); however, they decrease over time. Conclusions: Previous meta‐analyses focused on single treatments (e.g. CBT‐I). This review differs by comprehensively investigating and comparing a range of insomnia treatments. The evidence for CBT‐I indicates it to be moderately effective, but mindfulness‐based interventions maintain their effects over time; investigation of other third‐wave interventions is thus recommended. Robust methodologies would further advance this field, with attention paid to the accurate reporting of Treatment as usual (TAU). These findings will enable clinicians make informed decisions on the best treatments available to oncology patients suffering from insomnia.

Patients and informal caregiver's experience of gynaecological cancer follow‐up care

Laura Timmis¹, Rhiannon Tudor Edwards¹, Nicholas Stuart³, Valerie Morrison²

¹Centre for Health Economics and Medicines Evaluation, Bangor University, Bangor, UK, ²School of Psychology, Bangor, Bangor, UK, ³Betsi Cadwaladr University Health Board, North Wales, UK

BACKGROUND: It is important to understand patients and their informal caregiver's experiences and preferences for gynaecological cancer follow‐up care. Following treatment, patients traditionally have regular follow‐up appointments in secondary care for 5 years with the aim of detecting any cancer recurrence and managing any physical and psychological morbidities. However, patients report unmet needs during the follow‐up period and have asked for alternative models of care. Aims: The aim of this research was to understand patients and their informal caregiver's experiences and preferences for gynaecological cancer follow‐up. Methods: Cross‐sectional focus groups and interviews were conducted using a semi‐structured interview guide. Seventeen patients and seven informal caregivers were recruited from follow‐up care clinics within North Wales. Sixteen participants took part in a focus group (ranging from n = 2 to n = 5 per group), and eight (n = 5 patients, n = 3 carers) participants took part in interviews. Results: Participant's disease and disease stage was representative of the gynaecological cancer population. Patients and their informal caregiver's illness experiences shaped their perception of the aim of follow‐up care. Patients and informal caregivers valued holistic patient‐centred care, the healthcare professional seen, the frequency of care and the organisation and accessibility of their follow‐up appointments. Conclusions: There was a clear interaction between experiences, perceptions and preferences for care. This highlighted that an integrated model of gynaecological cancer follow‐up may benefit patients and informal caregivers in the future.

Does the Patient Activation Measure (PAM) predict engagement with an online system for patients to report and manage symptoms during and after cancer treatment?

Lorraine Warrington, Kate Absolom, Marie Holmes, Zoe Rogers, Andrea Gibson, Beverly Clayton, Patricia Holch, Rob Carter, Ian Kellar, Mark Conner, Galina Velikova

University of Leeds, Leeds, UK

Background: The Patient Activation Measure (PAM) assesses how engaged a patient is in their own healthcare. PAM score is associated with the use of electronic self‐report/self‐management systems for chronic illness, but this relationship appears complex. For example, highly activated patients may use these systems more initially, but this relationship can be bidirectional and use may also increase activation. Electronic patient self‐Reporting of Adverse‐events: Patient Information and aDvice (eRAPID) is an online system for patients to report and manage symptoms during and after cancer treatment. Patients complete a weekly online questionnaire about symptoms and side effects, receive automated tailored advice and are given access to a self‐management advice website. Aim: This study aims to explore whether (a) PAM score at baseline predicts engagement with eRAPID over the 18‐week period; (b) engagement with eRAPID is associated with PAM scores. Method: As a pilot phase of an randomized controlled trial to evaluate eRAPID, patients beginning chemotherapy for early Breast and Colorectal cancer and early and metastatic gynaecological cancer were recruited. Patients were randomized to receive usual care or eRAPID intervention and followed up over 18 weeks. Participants completed PAM at baseline, 12 and 18 weeks. Engagement with eRAPID was assessed by compliance with weekly questionnaire completions, and use of the eRAPID website (intervention arm only). Results and conclusion: Eighty‐seven patients were recruited (43 usual care and 44 eRAPID intervention). The 18‐week follow‐up is ongoing and will be completed in January 2016. Preliminary data will be presented. Analysis of the data will lead to a better understanding of patient engagement with eRAPID and inform future implementation.

PROACTIVE: PROSTATE Cancer Support Intervention for Active Surveillance: protocol for a multi‐centre feasibility trial

George Lewith¹, Sam Watts¹, Alison Richardson¹, Geraldine Leydon¹, Lucy Brindle¹, Emily Arden‐Close², Stephanie Hughes¹, Caroline Moore³, Lallita Carballo⁴, Hilary Plant⁴, Neophytos Petrides⁴, Brian Birch⁵, Beth Stuart¹, Lily Yao¹, Roger Bacon⁶

¹University of Southampton, Southampton, Hampshire, UK, ²Bournemouth University, Poole, Dorset, UK, ³University College London Hospital, London, UK, ⁴UCLH MacMillan Cancer Centre, London, UK, ⁵Southampton University Hospitals NHS Trust, Southampton, Hampshire, UK, ⁶Prostate Cancer Society, Emsworth, Hampshire, UK

Background: For men diagnosed with localised prostate cancer, active surveillance (AS), which involves being monitored regularly but not receiving immediate active treatment, is recommended. Radical treatment increases risk of physical dysfunction through adverse effects without improving survival. However, men managed with AS may experience significant anxiety, which is a predictor of transfer to clinically unnecessary radical treatment. We developed and piloted PROACTIVE, a psycho‐educational support intervention (group sessions delivered by nurses over 6 weeks plus a website) designed to help patients on AS self‐manage their distress. Aims: The aim of this study is to evaluate the feasibility of delivering PROACTIVE, which is the first survivorship support intervention designed specifically for AS. Methods: Sixty AS patients from two National Health Service urology departments will be recruited and randomised. At each site, 20 will receive PROACTIVE and 10 usual treatment. Participants will complete questionnaires (Hospital Anxiety and Depression Scale, Warwick/Edinburgh Mental Wellbeing scale, EQ5D and Memorial Anxiety Scale for Prostate Cancer) pre‐intervention, post‐intervention and at 6 and 12 months. Qualitative interviews to determine views on the impact and acceptability of intervention and the role of wives/partners will be carried out post‐intervention and at 12 months. We will also interview wives/partners and clinical staff to determine their views on PROACTIVE and its feasibility. Results: We will assess changing trends in anxiety, quality of life and well‐being between men randomised to PROACTIVE versus usual treatment. Conclusions: The outcome of this feasibility trial will underpin the development and design of a subsequent multi‐centre trial to determine the practicality of delivering PROACTIVE more widely.

An exploration of men's experiences of undergoing active surveillance for favourable‐risk prostate cancer: a mixed methods study protocol

Eimear Ruane‐McAteer, Joe O'Sullivan, Sam Porter, Gillian Prue

Queen's University Belfast, Belfast, UK

Background: Frequently, men with prostate cancer (PCa) are diagnosed with favourable‐risk disease. Active surveillance (AS) allows these men to postpone or avoid the adverse side effects associated with curative treatment until the disease progresses, although this uncertainty can create an additional emotional burden. Aims: This study aims to determine the frequency and temporal variability in anxiety, depression, uncertainty and physical symptoms in men with favourable‐risk PCa, to identify personality or socio‐demographic characteristics that may predict psychological adjustment, and to explore, in depth, the personal experiences of men undergoing AS. Methods: A mixed‐methods sequential explanatory design consisting of two phases: quantitative followed by qualitative. Ninety men with favourable‐risk PCa will be assessed immediately post‐diagnosis and followed quarterly for 12 months. Ninety matched non‐cancer men will be followed simultaneously. For Phase 2 10–15 AS, patients will participate in qualitative interviews. Results Psychological and physical symptoms will be assessed to determine their prevalence and severity over time. Personality and socio‐demographic factors will be explored to identify predictors of psychological adjustment. Qualitative interviews will facilitate further exploration of quantitative results and obtain deeper understanding of participants' personal interpretations of their illness and experiences of AS. Conclusion: To our knowledge, this is the first mixed‐methods study to utilise early baseline measures and include a non‐cancer comparison group to most accurately capture the experience of AS. We hope the study will allow healthcare professionals to identify those men who may require additional support throughout their time on AS therefore improving patient care and acceptance of this management option.

Supporting cancer survivors returning to work: a pilot study of a Vocational Rehabilitation service

Julie Denning¹, Nicola Hunter¹, Bronwyn Seaton²

¹Working Towards Wellbeing, Bury St Edmunds, UK, ²Swiss Re, London, UK

Background: Being at work has been shown to be good for health and improves function and general well‐being post diagnosis. Research suggests that people surviving cancer want to return to work. However, most rehabilitation services do not address return to work or the physical, emotional and practical issues affecting cancer survivors such as fatigue, pain, financial problems and reduced self efficacy. Providing support through multilevel case management is predicted to help people on their return to work journey as research by Macmillan has shown that such Vocational Rehabilitation (VR) services are beneficial. Aims: This research aims to build on their findings by providing a stepped care model within a population of income protection claimants to ascertain whether a VR service can have a positive impact on return to work outcomes and physical and psychological factors. Method: A longitudinal pilot study of 115 people was carried out to explore improvements in mood, fatigue, quality of life, self efficacy, readiness to return to work and satisfaction. Results: At discharge, 68% of patients returned to work, 32% being too unwell to continue in the service. There was a 28% improvement in the Chalder Fatigue Scale, 40% improvement in the Generalized Anxiety Disorder 7, 45% improvement in the PHQ9 and 11% improvement in Self efficacy Scale, and a 27% improvement in readiness to return to work. ConclusionThe findings from this pilot study are positive and suggest a need for VR services for people surviving cancer to improve their quality of life including return to work plans.

Is social inequality related to different patient concerns in routine oral cancer follow‐up clinics?

Sarah Allen², Derek Lowe¹, Simon Rogers¹

¹Edge Hill University, Merseyside, UK, ²Liverpool University, Liverpool, UK

Background: Oral cancer has a higher incidence in the lower social strata and these patients are less likely to engage in supportive interventions and report a poorer quality of life. Aim: The aim of this paper is to compare the Patient Concerns Inventory (PCI) responses across social groups attending routine oral cancer follow‐up clinics with particular focus on the deprivation lower quartile. Methods: The PCI package is completed by patients as part of their routine review consultation with signal‐to‐noise ratio. Patients were those diagnosed between 2008 and 2012. Deprivation was stratified using the Index of Multiple Deprivation 2010 from postcode.Results: Of the 106 eligible patients, 85% used the PCI. Just over half (54%) were living in the most deprived quartile, with two‐thirds (68%) of males in the most deprived quartile, compared with 35% of females (p = 0.004). In regard to number and type of PCI items selected by patients at their first PCI clinic there were no notable differences in respect of IMD classification. The two commonest concerns were fear of the cancer coming back (43%) and sore mouth (43%). The most deprived quartile reported significant problems in regard to mood (p = 0.004) and recreation (p = 0.02) and a non‐significant trend (36% vs 18%, p = 0.09) in stating their overall quality of life as being less than good. Conclusion: It is possible to identify the concerns of patients from lower socio‐economic strata as part of routine follow‐up clinics. This allows for targeted multi‐professional intervention and support to improve the outcome in this hard to reach group.

The patient concerns inventory integrated as part of routine oral cancer follow‐up consultations frequency, case‐mix, items initiated by the patient

Simon Rogers², Francesca Thomson¹, Derek Lowe²

¹Aintree University Hospital, Liverpool, UK, ²Edge Hill University, Merseyside, UK

BACKGROUND: National Institute for Health and Care Excellence Improving Supportive and Palliative Care for Adults with Cancer (2004) and the Cancer Reform Strategy (2007) supports the premise that assessment and discussion of patients' needs for physical, social, psychological and spiritual well‐being should be undertaken during oncology follow‐up. Aim: The aim of this paper is report the number, frequency and characteristics of oral cancer patients attending the lead author's clinic and if the Patient Concerns Inventory (PCI) was completed. Methods: The PCI data were analysed from oncology follow‐up clinics between 1 Augst 2007 and 19 December 2014. Audit approval was given by the Clinical Audit Department, University Hospital Aintree. Results: There were 269 patients with 854 PCIs completed [median (interquartile range) of 2 (1–5), range 1–11]. The greatest number of patients using the PCI on any one clinic date was 14. On 22 clinic dates, only one patient used the PCI, and this reflects case‐mix in clinic and also network Information Technology problems. The commonest concerns raised by the patients across all the clinic consultations were fear of recurrence (33%), dry mouth (29%). dental health (25%) and chewing (21%). By domain, this represented physical and functional well‐being (64%), psychological emotional and spiritual well‐being (49%), social care and well‐being (23%) and treatment related (15%). Conclusion: The incorporation of the PCI as part of routine oncology clinics allows for a more patient initiated and focused consultation available to the majority of patients throughout their follow‐up. This complements other Holistic Needs Assessments. The PCI allows for greater opportunity to provide targeted multi‐professional intervention and support.

Psychological study of teenage and young adult (TYA) cancer patients and their parents throughout and beyond their cancer treatment: a pilot study

Chrisitina Maurice¹, Jane Robson², Ian Goodyer¹, Laura Abbas², Wendy Moss², Cathy Walsh³, Helen Hatcher²

¹Department Psychiatry, Cambridge University, UK, ²Teenage and Young Adult Oncology Service, Cambridge University Hospital, Cambridge, UK, ³Department of Liaison Psychiatry, Cambridge University Hospital, Cambridge, UK

Background: Cancer for a teenage and young adult is often complicated by diagnostic delays, poor prognosis, negative physical and psycho‐social consequences. Psychopathology incidence remains hidden even in remission or with a favourable prognosis. Aim: This study aims to compare and contrast the psychological impact and patient experience between cancer survivors at high and not high risk for mental illness following successful treatment. Method: One hundred seventy‐two patients and families on the teenage and young adult were register. Patients were asked to complete two self‐report questionnaires, Symptom check list (SCL90) and response states questionnaire (RSQ), and to take part in a semi‐structured interview. Results: Thirty‐three patients (16 male and 17 female) and 45 parents/significant others were recruited. All patients experienced significant levels of psychological distress at some point. Fifty‐one per cent reached psychiatric caseness level (SCL90). Caseness increased with age of the sample and was correlated with higher cognitive rumination scores. Qualitative analysis of the patient experiences noted those positive for psychiatric caseness reported dwelling on potential negative consequences of illness, attributing physical facility, nervousness and being slower as a consequence of their treatment. Psychiatric cases reported a perception of more unexplained side effects from cancer treatment. Non‐psychiatric cases had a more positive outlook on life and were more well‐being conscious. Both groups were equal in recognising treatment that had given them a fresh start. Conclusions: We have shown evidence of elevated psychological symptoms in this population. High risk for psychiatric caseness exists and may bring new difficulties through abnormal recall and perception of the illness experience. Interview data suggest psychological outcome is not predicted by prognosis or specific cancer diagnosis.

Meet me at the virtual bar: cancer survivor and family experiences of online cancer communities

Lydia Harkin, Kinta Beaver, Paola Dey, Kartina Choong

University of Central Lancashire, Preston, UK

Background: It has been reported that a quarter of people diagnosed with cancer lack social support. Online cancer communities could provide this form of support. Sixty‐one per cent of adults in the UK access social media every day and online cancer communities are rising in popularity. However, there is limited evidence about how people use online cancer communities, and how they may, or may not, support people affected by cancer. Aims: This study aims to explore experiences of people affected by cancer visiting online cancer communities. Methods: A qualitative study was conducted using a constructivist grounded theory approach. Data were generated through semi‐structured interviews with people who had visited online cancer communities, including people diagnosed with cancer and their family members. Results: A core category was developed and labelled ‘navigating cancer using online communities’. Participants used support in communities to navigate challenges they faced with cancer. This produced three categories of experience in online communities. Firstly, the advice of community members set participants on a ‘journey to become informed’. Secondly, participants were cast into a ‘journey to recreate identity’ as they connected and formed friendships online. Thirdly, participants navigated a ‘journey through different online worlds’ to the most relevant and often hidden communities. Conclusions: Social support is prevalent in online communities, multifaceted and mobilises active self‐management in cancer care. This theoretical framework can inform the development of existing online communities to suit the needs of people affected by cancer. Further research should consider online communities in interventions for cancer self‐management.

Special considerations in the management and experience of prostate cancer in less studied ethnic groups: a qualitative metasynthesis

Carol Rivas¹, Lauren Matheson², Johana Nayoan¹, Adam Glaser³, Anna Gavin⁴, Penny Wright³, Eila Watson²

¹University of Southampton, Southampton, UK, ²Oxford Brookes University, Oxford, UK, ³University of Leeds, Leeds, UK, ⁴Queen's University Belfast, Belfast, UK, ⁵University of Leeds, Leeds, UK

Background: Most qualitative studies exploring the impact of prostate cancer on men and their partners consider the dominant white ethnic groups in the USA, UK, Scandinavia and Australia, with generally concordant findings. Other ethnic groups may have different experiences. Aims: The aim of this study is to explore the impact of prostate cancer and its treatment on men and their partners from the less studied non‐white ethnic groups. Methods: Using meta‐ethnography and textual narrative, we synthesised peer reviewed qualitative interview‐based studies dated 2000–2015 focused on less well‐reported ethnic groups, as a sub‐synthesis of a comprehensive metasynthesis (148 papers) on the impact of prostate cancer. Results: Twenty‐two papers (15 studies) covering 11 ethnic groups were analysed. Nine studies considered black and minority ethnic groups in the UK and USA with the remainder considering the dominant populations of Brazil, the Pacific Islands, Israel, Turkey and Japan. We collected first‐order and second‐order themes from the studies to develop conceptual third‐order themes. The following were specific to the US and UK minority groups and Pacific Islanders: a spiritual continuum (from the will of God to God as helpmate), one more obstacle in the lifelong fight against adversity and developing sensitive talk with a purpose (on disclosing the cancer to informal networks in culturally appropriate ways). Themes from the other studies were similar to those in the overall metasynthesis. Conclusions: Health care for prostate cancer should take account of contextually and culturally specific coping mechanisms and psychosocial factors in minority ethnic groups. More studies are needed in diverse ethnic groups.

The development and psychometric properties of instruments measuring religious coping in clinical cancer research: a systematic review

Zena Al‐Sharbati¹, Pauline Adair², Susan Rasmussen², Samir Al‐Adawi¹

¹Sultan Qaboos University, Muscat, Oman, ²University of Strathclyde, Glasgow, UK

Background: Various studies have been conducted to explore the relationship between religious coping (the use of religious beliefs or behaviours to facilitate problem solving to alleviate the negative emotional consequences of stressful life events) and illness adjustment among people with cancer. Despite plethora of such studies, there is an explicit assumption that such studies are marred with various conceptualization and methodological limitations. Indeed, to our knowledge, no reviews have been undertaken to investigate the development and psychometric properties of religious coping measures in clinical cancer research. Aims: This study aims to undertake a systematic review to assess the utility of religious coping measures in cancer research. Specifically, the present undertaking is to examine the development, psychometric properties of the existing measures, as well as to glean the subscales of religious coping measures. Methods: A systematic search of relevant databases will be conducted to identify eligible studies (details are included in the Systematic Review protocol published online). Two authors independently screened studies for eligibility by reviewing the titles and abstracts of the articles based on pre‐defined eligibility criteria. Discrepancies were resolved by discussion among all authors. The methodological qualities of the studies will be assessed using preferred reporting items for systematic reviews and meta‐analyses protocols. Results: Review is ongoing; preliminary findings will be presented. Conclusions: The findings of this review will inform the development of future religious coping measures, which address behavioural, cognitive and emotional elements of religious coping.

What psychological interventions have been found to reduce overall distress in cancer patients? A systematic review. Despina Nikandrou

Despina Nikandrou

University of St. Andrews, St. Andrews, UK

BACKGROUND: Breast cancer constitutes the most common cancer type among the female population on a worldwide scale. The diagnosis and treatment constitute a stressful period, and distress can be detected in every phase of the cancer trajectory and patients suffer from multidimensional psychosocial difficulties. Aims: The aim of this systematic review was to examine and compare the effectiveness of various psychological interventions in the distress reduction. A focus on breast cancer women, whose distress was measured by a formal accepted scale, was intended. Methods: PsycInfo and Pubmed were the databases that were searched, and Refworks was also used, in order to organise the references. In line with the criteria, papers were systematically extracted by title, abstract, full paper and publication year. The inclusion criteria were participants with a present or past breast cancer diagnosis, at any stage of the disease or treatment. All patients were over the age of 18, group or individual‐based postdiagnosis psychological and psychosocial interventions that lower distress. Couple and family interventions and other cancer types were excluded. Results: From 51 studies initially found, eight were finally included in the review. The studies employed cognitive behaviour therapy, psychoeducational and mindfulness‐based interventions. All studies presented positive results, but methodological issues and lack of analytical reporting of interventions threatened the validity of findings. Conclusions: Every intervention gave encouraging results in the reduction of distress, but their effectiveness was challenging to identify, because of the limited generalizability and limitations. New intervention designs along with ameliorated reporting procedures are required.

Psychological intervention to alleviate distress in haematopoietic stem cell transplantation: a phase 2 study

Michael Baliousis¹, Michael Rennoldson¹, Jayne Mills², Dave Dawson³, Roshan das Nair¹

¹University of Nottingham, Nottingham, UK, ²Nottingham University Hospitals NHS Trust, Nottingham, UK, ³University of Lincoln, Lincoln, UK

BACKGROUND: Haematopoietic stem cell transplantation (HSCT) is an intensive procedure associated with psychological distress particularly during the first weeks. Based on psychological theory of distress during illness, a preparatory group was developed aiming at reducing negative perceptions of HSCT and fostering helpful coping. Aims: The present study aimed to evaluate the feasibility of the design and the intervention and explore the validity of the underlying theory in HSCT. Methods: Participants were adults from consecutive referrals at two transplant centres with half randomised to the intervention and half to treatment as usual. Psychological distress, HSCT perceptions and coping were assessed at baseline (following consent), on transplant day, 2 weeks, and 4 weeks after transplantation. Results: Of 99 eligible patients, 45 consented. Barriers included competing priorities, being unwell, travel distance and insufficient time for consent prior to transplantation. Of 21 participants randomised to intervention, five attended. Barriers included insufficient time prior to transplantation (with slow group accrual due to randomisation) and competing priorities. Anxiety peaked two weeks following transplantation but depression increased throughout. Intervention effects were small and not reliable but negative perceptions of HSCT and use of a range of coping styles (disengagement, denial, but also planning, emotional support, etc.) predicted higher distress throughout the period. Conclusions: The findings illustrated complex psychological needs during the acute phase of HSCT and the relevance of HSCT perceptions and coping. They also revealed considerable barriers to a randomised trial and implementing a preparatory intervention, highlighting the need for alternative methods of evaluation and delivery.

When treatment is over: What do family members need, and how can we support them? ‐ A mixed methods study

Emily R. G. Moffat¹, Peter Hudson², Sam Porter¹, Olinda Santin¹

¹Queen's University Belfast, Belfast, Northern Ireland, UK, ²University of Melbourne, Melbourne, Victoria, Australia

Background: As healthcare reforms emphasise care within the community, increased pressure is placed on families to support cancer patients' recovery. Providing informal care can impact upon family members' well‐being, and supportive care needs. However, the long‐term effects of providing informal care in post‐treatment survivorship are largely understudied, and interventions for this population have reported limited effectiveness. Aim: To develop a psychosocial support package designed to address the supportive care needs of family members in post‐treatment cancer survivorship. Methods: The MRC framework for developing and evaluating complex interventions will guide the development of the psychosocial support package. Following a systematic search of relevant literature, approximately 30 semi‐structured interviews will be conducted with family members of post‐treatment cancer survivors, and 25 with key cancer care professionals. Participants will be recruited through two HSC Trusts and relevant voluntary organisations across Northern Ireland. Interview questions will focus on supportive care needs, and the extent and effectiveness of current available supports. Thematic analysis will be used to draw themes from the data. Results: Results from this study will inform the development of an evidence‐based, targeted psychosocial intervention for family members who are experiencing difficulty across post‐treatment survivorship. Conclusion: Future research will include testing and evaluation of the support package. Dissemination of findings will inform practice relating to the psychosocial support of cancer survivors and the people who are important to them.

Language and communication impairmants in long‐term posterior fossa tumour survivours

Olha Hodgson¹, Nicola Pitchford¹, Rob Dineen¹, Denis Schluppeck¹, David Walker²

¹University of Nottingham, Nottingham, UK, ²Brain Tumour Research Centre, Nottingham, UK

BACKGROUND: Although cognitive impairments in posterior fossa tumour survivors are well documented, there is limited knowledge about the extent of the deficits in the linguistic abilities in this group of patients. This knowledge gap may negatively impact long‐term care and rehabilitation practices. Aims: This study aims to investigate what aspects of language and communication are impaired in pulmonary function‐testing (PFT) survivours and to examine functional changes in the brains of the PFT survivors, associated with the linguistic deficits. Method: Eighteen young adults at least 12 months post‐PFT resection and 18 age/sex‐matched healthy volunteers had their language proficiency, non‐verbal intelligence and manual dexterity assessed using standardised neuropsychological tests. Cortical activation during performance of two language tasks has been examined using functional magnetic resonance imaging. Results: Patients performed significantly worse in all language domains, compared with healthy controls. In a patient sample, there were a number of significant associations between the outcome variables, including a strong association between the linguistic abilities and non‐verbal intelligence, suggesting common developmental trajectories and susceptibility to impairment through neurological injury. In a healthy volunteer sample, fewer loci of cortical activation during the semantic processing and speech articulation fMRI tasks have been detected. Conclusion: Young adult survivors of the posterior fossa tumours display variable profiles in the linguistic, intellectual and motoric abilities and, as a group, perform significantly worse compared with matched healthy controls in all domains. More widespread cortical activation is evident during the language processing in patients compared with healthy volunteers. In conjunction with the impaired behavioural performance, this suggests compensatory activity and less efficient language processing.

Opening up that ‘can of worms’ to discuss sexual orientation and sexuality with lesbian, gay and bisexual cancer patients

Sean Ralph¹, Steve Brown²

¹The Clatterbridge Cancer Centre NHS Foundation Trust, Liverpool, UK, ²University of Liverpool, Liverpool, UK

Background: Previous research has identified that a significant number of lesbian, gay and bisexual (LGB) patients are having poor experiences of healthcare services as a result of their sexual orientation. A major source of frustration for LGB cancer patients is the constant assumptions of heterosexuality, which are made by health professionals. Fifty‐seven per cent of LGB people surveyed at Liverpool Pride 2012 think it is important for health professionals to know about the sexual orientation of patients, but only 7% of those surveyed who had used the services of The Clatterbridge Cancer Centre had been asked about their sexual orientation. Aims: The aim of this study is to enhance the cancer journey for LGB patients by the following:

• exploring the views and experiences of health professionals on discussing sexual orientation and sexuality with LGB patients; and
• exploring ideas on how service improvement and advances in clinical practice can best be facilitated at The Clatterbridge Cancer Centre.

Methods: This study is inviting health professionals working with cancer patients at The Clatterbridge Cancer Centre to take part in an initial semi‐structured interview with one of the researchers. Following on from this some participants will then be invited to take part in a focus group to discuss the findings from the interviews and explore in more details how clinical practice might best be improved in order to enhance the cancer journey for LGB people. Results and conclusions: This study has local R&D approval at The Clatterbridge Cancer Centre but is still awaiting approval from the University of Liverpool.

Kinesiology taping as a novel adjunct in oncology and palliative care?

Gourav Banerjee^1*, Alison Rose^1,2, Michelle Briggs¹, Mark I. Johnson¹

¹Leeds Beckett University, Leeds, Leeds Pallium Research Group, United Kingdom, ²Coach House Sports Physiotherapy Clinic, The Coach House, Leeds, United Kingdom

Background: Cancer presents with a variety of symptoms including pain, fatigue, oedema, breathlessness, and abdominal discomfort. Palliation of these symptoms usually involves a pharmacology‐led approach with a trade‐off between symptom relief and adverse effects. Kinesiology taping is a non‐pharmacological technique which involves application of elastic cotton adhesive tape on the skin. It is often used to manage musculoskeletal injuries but could also be used as an adjunct to manage some of the cancer‐related symptoms. Aim: To scope research literature on kinesiology taping for management of cancer‐related symptoms. Methods: MEDLINE, CENTRAL, EMBASE, CINAHL, AMED, BNI, PEDro, OTseeker, Web of Science, Scopus were searched for clinical studies including RCTs, non‐RCTs, case series and case reports published in English, from 1970 to 2015, using controlled vocabulary, and keywords. Studies were analysed by a tally of outcome against the comparison group. A descriptive analysis was performed on studies without comparison groups. Results: Seven studies with a comparison group and nine studies without a comparison group were found on the use of kinesiology taping for breast cancer‐related outcomes (lymphedema, seroma, grip strength, upper limb movability & quality of life). Positive effects in favour of kinesiology taping were found in 5/7 studies with a comparison group and in all studies without a comparison group. Conclusion: Kinesiology taping may be beneficial for breast‐cancer related lymphedema, although a formal systematic review is necessary to confirm. There was no evidence to judge usefulness of kinesiology taping for the management of pain, fatigue, breathlessness, and abdominal discomfort.¹

¹The abstract above was completely replaced following initial online publication.

Development of a physical activity behaviour change intervention for cancer survivors

Sadia Nafees, Nefyn Willaims, Rhiannon Edwards, Clare Wilkinson

Bangor University, Wrexham, UK

Background: Although positive effects of physical activity in cancer survivors are well‐established, survivors are often not active enough to benefit. Exercise Referral Schemes are under‐used by cancer survivors, largely due to lack of referral. A physical activity promotion pack, “MoveMore”, was developed by Macmillan in 2011, followed by a campaign to promote it to all cancer survivors in Wales. The aim of this project was to develop a behaviour change intervention to reinforce the “MoveMore” message, and promote physical activity for cancer survivors. Methods: Following the MRC framework, a systematic review was conducted to determine the effectiveness of physical activity education materials, a literature review identified relevant theory to underpin the proposed intervention, focus groups explored cancer survivors' views about physical activity advice and informed the refinement of the intervention. Finally a survey of health professionals explored knowledge and beliefs about promoting physical activity to cancer survivors. Results: The systematic review findings indicated that education materials may increase physical activity levels in cancer survivors. Furthermore reinforcement based on behaviour change theories complements it. Focus groups participants wanted consistent, tailored and face‐to‐face physical activity advice as part of their standard care. The survey confirmed the focus group findings. Conclusions: Physical inactivity in cancer survivors needs addressing to improve QoL. The proposed 12 weekly text message reinforcement intervention to promote physical activity in cancer survivors may be beneficial if integrated into existing health services. The feasibility of the proposed intervention can be tested in a pilot trial as a future research work.