Psycho-Oncology Psycho-Oncology 24 (Supp. 1): 1–15 (2015) Published online in Wiley Online Library (wileyonlinelibrary.com). DOI: 10.1002/pon.3824

Oral Presentations

The long-term psychosocial impact of cancer – the views of young adult survivors of childhood and adolescent cancer Brown M1,2, Pearce M1,2, Bailey S1,2, Skinner R1,2 1 Newcastle University, Newcastle upon Tyne, UK, 2 Great North Children’s Hospital, Newcastle upon Tyne, UK BACKGROUND: We currently lack a full understanding of the many ways in which childhood and adolescent cancer can affect a young person several years after treatment has ended. The views of survivors have also been limited by the use of generic quantitative measures and a lack of qualitative studies. AIM: This study aimed to explore the views of young adult survivors regarding how an experience of cancer has influenced their lives. METHODS: Twelve survivors diagnosed ≤18 years old, aged 18–30 years old at time of study and ≥5 years from treatment took part in either a focus group (n = 4) or a semi-structured interview (n = 8). Transcripts were analysed using thematic analysis. RESULTS: The main themes were altered life perspective, perceptions of self and relationships with significant others. Illness had highlighted the uncertainty of life which led survivors to give importance to making the most of life and being thankful for what they had. Some also felt stronger and more determined as a result of their experience. However, enduring issues with family and social relationships, body image and confidence were reported by some, as were late adverse effects of treatment. Most desired children but uncertainty about fertility was evident. CONCLUSION: Findings suggest that despite high levels of achievement, some survivors may still benefit from further information and support in specific areas. The results of this study, along with a review of the literature, shall inform the development of a questionnaire which aims to elucidate the pathways to important psychosocial outcomes for survivors. Quality of life, unmet needs and psychological morbidity in prostate cancer survivors: implications for redesigning follow-up Watson E1, Frith E1, Shinkins B2, Rose P2 1 Oxford Brookes University, Oxford, UK, 2 University of Oxford, Oxford, UK BACKGROUND: The prevalence of prostate cancer survivors is rising rapidly and hospital clinics are struggling to cope with the demand for © 2015 The Authors. Psycho-Oncology © 2015 John Wiley & Sons, Ltd.

follow-up. This study explored quality of life, unmet needs and psychological morbidity in men with prostate cancer, with a view to informing new models for follow-up care. METHODS: 508 men diagnosed 9–24 months previously, from two UK cancer centres were invited to participate, and complete a postal questionnaire. The questionnaire measured: prostate-related quality of life (EPIC26); unmet needs (SCNS); anxiety and depression (HADS), self-efficacy (modified Self-efficacy Scale), health status (EQ-5D), and satisfaction with care. Data were analysed by age, co-morbidities and treatment group. RESULTS: 315 men responded (64.1%). Urinary, bowel, and sexual functioning was reported as a moderate/big problem in the last month for 15.2% (n = 48), 5.1% (n = 16), and 36.5% (n = 105) men, respectively. The most commonly reported moderate/high unmet needs related to changes in sexual feelings/relationships, managing fear of recurrence, and concerns about the worries of others. 17% (n = 51/307) men had possible/ probable clinical levels of anxiety and 10.2% (n = 32/308) suffered with depression. The presence of problematic side-effects was associated with higher anxiety, poorer self-efficacy, and greater unmet needs. CONCLUSIONS: This study highlights important physical and psycho-social issues for a significant minority of prostate cancer survivors. Methods for identifying men with on-going problems, alongside new interventions and models of care, are needed to improve quality of life. Data on the feasibility and acceptability of a primary care nurse-led intervention we have designed to address needs will be presented. Individual-Based vs. Group-Based Psychoeducation Sessions for Breast Cancer Survivors Following Radiotherapy (RT): Impact on Health-Related Quality of Life and Self-Efficacy Albutt KA1, Wem L2, Copeland L2, Gardner PH3, Velikova G1, Holch P1 1 University of Leeds, Psychosocial Oncology and Clinical Practice Research Group, Leeds, UK, 2 Leeds Teaching Hospitals NHS Trust, St. James’s Institute of Oncology Radiotherapy Department, Leeds, UK, 3University of Leeds, School of Psychology, Leeds, UK BACKGROUND: Research suggests that GroupBased Psychoeducation (GBP) is an effective alternative to Individual-Based Psychoeducation (IBP) for improving Health-Related Quality of Life

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(HRQoL) in Breast Cancer Survivors (BCS) (Dolbeault 2009; Helgeson, 2001) and is an established practice in breast cancer treatment. However, there is a paucity of research exploring possible mediating effects of patient extraversion on outcomes. AIM: To explore whether a GBP session improved patients HRQoL and Self-Efficacy (SE) compared to an IBP and if this was influenced by patients’ extroversion. METHOD: Fifty BCS receiving RT at Leeds Institute of Oncology attending IBP or GBP sessions led by experienced RT professionals were recruited. Questionnaires assessing SE and HRQoL were completed pre, post and 6 weeks after session attendance. Personality was assessed at baseline. Six BCS participated in follow-up audio-recorded semi-structured interviews. ORAL ABSTRACTS: RESULTS: Statistical analysis revealed no significant differences between IBP and GBP in the Quality of Life in Adult Cancer Survivors (QLACS) generic and cancer-specific summary scores, and there was no effect of extroversion. Thematic framework analysis suggested that patients experienced some post-discharge anxiety supported by the findings that SE diminished over time. CONCLUSION: The comparable HRQoL scores supports the use of GBP as an acceptable alternative to IBP with associated cost savings in service provision and screening for personality factors may not be required. Future research will screen to stratify patients who display a clinical need for individual support to target resources effectively. Further, the findings suggest a need for post-discharge interventions to counteract patients reduced perceived SE. Unmet psychosocial needs and their psychological impact in haematological cancer survivors Swash B, Bramwell R, Hulbert-Williams N University of Chester, Chester, UK BACKGROUND: Unmet psychosocial needs are underexplored in haematological cancer and little is known about how the presence of need may relate to psychological outcomes. The relationship between need and outcome has been recognised but thus far the factors that may explain or moderate this relationship have not been examined. Psychological flexibility may be one such explanatory variable. METHODS: Haematological cancer survivors were recruited via advertisement circulated by two major UK cancer charities. Participants were asked to complete a questionnaire regarding their unmet needs (SCNS SF-34), psychological wellbeing (HADS, EORTC QLQ-C30) and psychological flexibility (AAQ-II). Participants were all over the age of 16 and had received a diagnosis of haematological cancer. 95 participants (53% female, average age 62) took part in the study. RESULTS: Results indicate that both unmet needs and psychological morbidity are prevalent in haematological © 2015 The Authors. Psycho-Oncology © 2015 John Wiley & Sons, Ltd.

Oral Abstracts

cancer survivors. Clinically significant levels of anxiety and depression were found in a sub-set of all disease groups. Significant correlations were found between levels of unmet needs and both anxiety and quality of life. Psychological flexibility was found to moderate the relationship between unmet need and distress. CONCLUSION: Patients with a haematological malignancy have on-going psychosocial care needs and need directly relates to overall psychological wellbeing. Unmet needs assessment therefore has a dual clinical utility: firstly to provide information regarding patient requirement for support; secondly, as an indicator of overall psychological wellbeing. Psychological flexibility was found to moderate the relationship between unmet need and distress; as such interventions that target flexibility may reduce distress. What are the experiences of cancer care in gay, lesbian and bisexual patients, and how do these differ from heterosexual cancer patients? Hulbert-Williams N, Plumpton C, McHugh R, Semlyen J, Flowers P, Storey L, Rearn E, Neal R 1 University of Chester, Chester, UK, 2Bangor University, Bangor, UK, 3London Metropolitan University, London, UK, 4Glasgow Caledonian University, Glasgow, UK, 5Queen’s University, Belfast, UK, 6King’s College, London, UK BACKGROUND: Lesbian, gay and bisexual (LBG) people frequently experience inequality within healthcare, and are an underserved population in cancer research. Population level experiences of cancer are monitored through administration of the National Cancer Patient Experience Survey (NCPES). AIMS: We undertook secondary analysis of 2013 NCPES data to explore cancer experiences in LGB people. METHODS: 68,737 people responded (68%), included a representative spread of demographic (gender, age, UK locality) and clinical (including common and rarer disease) factors. 568 participants (0.9%) identified their sexual orientation as LGB. Response differences were analysed using multivariate logistical regression. RESULTS: Bisexual respondents reported a less positive pathway to diagnosis, less satisfactory side-effect management, and less satisfactory relationships with nurse specialists. Bisexual, gay and lesbian patients reported poorer after-care and support provision, and that they were more likely to be dealing with cancer without family/friend input. Gay and Lesbian respondents reported that they weren’t treated with dignity and respect. Similarly, bisexual respondents reported that they were treated as “a set of symptoms” rather than a whole person. CONCLUSIONS: LGB respondents perceived a poorer overall cancer experience. Much of this relates to communication and relationships with healthcare professionals and may be Psycho-Oncology 24 (Supp.

1): 1–15 (2015) DOI: 10.1002/pon.3824

Oral Abstracts

influenced by heteronormativity and perceived homophobia; differences may result from higher care expectations, or represent genuine inequality. LGB respondents were coping alone, without family/friend input or adequate formal psychosocial support provision. Further research is needed to understand these differences better, though training for healthcare professionals is likely to be key to improving cancer experiences in this group. Distance caregivers in palliative care: a hidden population with specific needs Casa~ nas i Comabella C1, Boulton M1, Watson E1, Wee B2 1 Oxford Brookes University, Oxford, UK, 2 University of Oxford, Oxford, UK BACKGROUND: Palliative care encompasses the care of not only the patient, but also their family. Increasingly, people are moving away from the place where they grew up for work or personal reasons. It is not uncommon nowadays for family members to provide some kind of care at a distance. In addition, a myriad of information and new ways of communicating have become available through the internet. These have the potential to play a role in providing care from a distance to those near the end of life. AIMS: To explore the needs and experiences of distance caregivers in palliative care, and whether and how these carers use the internet in their role as carers. METHODS: Qualitative interviews were conducted with 20 distance caregivers. Carers were recruited using different strategies, including recruitment via seven hospices, as well as social media. RESULTS: Family carers living in the UK, USA, South Africa, Austria, China, Ireland and Australia were interviewed. Participants reported specific needs and concerns: receiving timely information from healthcare professionals, connectedness with the patient, and changes in the relationship with local family caregivers. Most participants indicated that they used the internet to find information about practical aspects of care and medical terminology and treatments. CONCLUSION: Policy makers, hospices and GPs need to be aware of and provide resources and support for distance carers. Further research exploring the potential of the internet to support carers living at a distance from patients at the end of life is required. Cancer experiences in individuals with an intellectual disability: Results from a grounded theory study Flynn S, Hulbert-Williams N, Hulbert-Williams L, Bramwell R Chester Research Unit for the Psychology of Health, University of Chester, Chester, Cheshire, UK BACKGROUND: Increasing numbers of people with an intellectual disability (ID) are diagnosed © 2015 The Authors. Psycho-Oncology © 2015 John Wiley & Sons, Ltd.

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with cancer, partly due to increased life expectancy. However, there is a paucity of research exploring their cancer experiences. Receiving a cancer diagnosis is distressing; this may be exacerbated by additional challenges faced by people with an ID. AIMS: To explore the cancer-related experiences of individuals with an ID. A multiple stakeholder perspective was adopted, collecting data from patients, family members and their caregivers. The purpose was to: (a) identify unmet needs in this population, and (b) to generate theory and encourage further research. METHODS: Using objectivist grounded theory methods, 6 index participants (individuals with an ID and cancer) and 12 linked participants (4 family members; 1 Medical Oncologist; 5 ID Professionals; 2 Social Workers) took part in semi-structured interviews. Interviews were transcribed verbatim and analysed concurrently to data collection. RESULTS: All index participants perceived a delayed diagnosis, and had limited understanding of diagnostic and treatment procedures. This lack of explanation increased anxiety levels and led to disengagement. Index participants, and some caregivers, were disenfranchised from their own experiences, often yielding to others (i.e. professional carers) and devaluing their own role. CONCLUSIONS: The vulnerability of people with an ID who are diagnosed with cancer was clear. Although emergent themes are often reported in research with non-ID cancer samples, there seems a higher incidence of difficulty in almost every aspect of diagnosis and treatment for this group. Future research should aim to reduce the disparity experienced by this population. The Education Engagement, Coping and Well-being of Teenagers with Cancer Pini S, Hugh-Jones S, Gardner P University of Leeds, Leeds, UK BACKGROUND: Every year approximately 2000 teenagers are diagnosed with cancer in the U.K. Being diagnosed with cancer during has been described as a “double penalty” for young people, as they adapt to their changing developmental situations alongside the psychosocial impact of their cancer. Teenagers have been shown to desire continued engagement with their education after a diagnosis of cancer, but how do they experience this and what factors are involved? AIM: To investigate the experiences of teenagers as they try to maintain engagement with their education following a diagnosis of cancer. METHODS: Twelve teenagers (aged 13–16) participated in visual interviews and completed questionnaires at 3 timepoints over the 9 months following their cancer diagnosis. Participants provided images to represent their experiences, which were then used as a stimulus for discussion. Interviews were analysed Psycho-Oncology 24 (Supp.

1): 1–15 (2015) DOI: 10.1002/pon.3824

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using Interpretative Phenomenological Analysis. RESULTS: Participants experienced their education as a complex interaction of different versions of themselves moving through intersecting timelines related to education, treatment and adjustment to cancer. There was a fluctuating desire to be treated normally alongside the often contradictory need for special consideration. Engagement with education was hindered by many factors including; telling others about their cancer, altered peer dynamics, not feeling part of the school community and the perception of changes in themselves. CONCLUSION: Education remains important for young people, even in the context of cancer. School is an environment where changes caused by cancer to peer dynamics, appearance, mobility, ability, and a personal sense of self are brought into sharp focus. Exploring sexual function assessment through cognitive interviews with cancer patients in REPORT-UK (Real-time Electronic Patient Outcome ReporTing of adverse events in UK cancer trials) Horne B, Kennedy F, Absolom K, Pini S, Brown J, Velikova G University of Leeds, Leeds, UK BACKGROUND: Cancer treatment can adversely affect sexual function (SF), but clinicians rarely discuss the issue in consultations. Patient Reported Outcomes (PROs) can make an invaluable contribution in supporting patients; however missing data can be problematic when asking about SF. The National Cancer Institute (NCI) has developed a PRO version of the Common Toxicity Criteria and Adverse Events system within clinical trials (CTCAE), including SF items. AIM: To review the NCI PRO SF items for acceptability and comprehension. METHODS: 48 cancer patients were purposively sampled by age, gender and diagnosis and offered the SF items after completing the main study questionnaire. In subsequent cognitive interviews (CI) the researcher explored comprehension, relevance and presentation via verbal probing techniques. Interviews were coded directly from audio recordings and analysed thematically. RESULTS: 27/48 (21 male, 6 female) patients completed the SF items, and a further male participated in the CI only, with 22 self-reporting as not sexually active. Patients, even those not sexually active, generally felt the questions were relevant, terminology was understandable and familiar, but response options were not comprehensive enough to accurately reflect patients’ issues, and additional suggestions included “not sexually active” and “not applicable”. CONCLUSION: There was little problem with comprehension of SF items but acceptability was varied and influenced by the complexity of SF issues. Any assessment will be unlikely to cover all SF issues, therefore ensuring a robust © 2015 The Authors. Psycho-Oncology © 2015 John Wiley & Sons, Ltd.

Oral Abstracts

referral pathway is essential, with staff adequately trained and supported to encourage confidence in dealing with these issues. Examining the Impact of ESAS Screening on Patient Outcomes Ellis J, Haddad S, McGarragle K, Yoon D, Ehrlich R, Myers J, Al-Allaq Y, Hawkins M, Fitch M, Karanicolas P Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada BACKGROUND: The Edmonton Symptom Assessment System (ESAS) is a symptom-screening tool designed to identify symptom burden and facilitate intervention by increasing communication between patients and health care providers. Cancer Care Ontario has mandated the implementation of ESAS as a routine part of cancer care. Although the psychometric properties of ESAS have been well documented, little research has explored the impact of ESAS screening on patient outcomes. AIMS: The present study examined the impact of ESAS screening on health-related quality of life (HRQoL) and patient satisfaction with care (PSC). METHODS: Patients completed questionnaires assessing HRQoL and PSC. Group 1 (n = 160) completed questionnaires prior to the implementation of ESAS, and Group 2 (n = 108) completed questionnaires after ESAS implementation (at recruitment and again, 2 weeks later). All oncology clinic nurses at the recruitment site underwent training in symptom assessment and appropriate referral protocol. RESULTS: Univariate comparisons of HRQoL and PSC between groups were conducted by applying two independent sample t-tests. No significant differences in HRQoL or PSC were found between patients who did not complete ESAS and those who did, at either time point. Further, when two groups of 29 patients were matched for gender, age, site, and stage, this finding persisted. CONCLUSIONS: ESAS screening did not impact patient outcomes, despite staff training in assessment and management of symptoms. Future research should examine how to improve symptom assessment and management by increasing clinician response to screening. Future research might also explore targeted patient education aimed at increasing knowledge and promoting self-management of symptoms. The development of an educational program for healthcare professionals to improve supportive care when a parent has cancer Grant L, Lister S, Wiseman T Royal Marsden NHS Foundation Trust, Surrey, UK BACKGROUND: The need for family-centred care when a parent has cancer is established; Psycho-Oncology 24 (Supp.

1): 1–15 (2015) DOI: 10.1002/pon.3824

Oral Abstracts

families are vulnerable to psychological difficulties and report a lack of professional support. Professionals report challenges with the role, including a high emotional burden, lacking confidence and skills, feeling inadequately prepared and unsupported, which can result in professionals distancing themselves from patients’ emotions and family matters. Educational initiatives are needed to improve professional engagement and quality of care. AIM: To establish whether benefits of an educational program, developed and piloted in a previous study, combined with group-supervision are transferred to the clinical context and maintained. Secondly to establish whether group-supervision provides professionals with the necessary support to sustain supportive care and to assess the affect of the program on professional wellbeing and stress. METHODS: A prospective repeated measures design was employed, using qualitative and quantitative measures pre and post program and following 6-months of group-supervision. Assessment included: “Confidence, Ability and Capacity Questionnaire”, reflective case exercises, simulatedpatient role-plays, Maslach Burnout Inventory (III), and an interview exploring participant’s experience of supervision. RESULTS: Two programs have been completed with a total of 20 participants and further programs are planned. Preliminary results are very positive and statistically significant; professionals successfully transferred skills and knowledge to the clinical context and maintained this over time. Group-supervision was essential; giving professionals a forum to discuss cases, integrate knowledge and reflect on the personal-professional impact of caring. CONCLUSION: The combined program enhances professionals’ skills and capacity to provide family-centred care and reduces the emotional burden professionals’ associate with this role. ‘It’s like a relationship, a trust, and that’s what we’ve got with the key worker’ Martins A1, Aldiss S1, Gibson F1 1 London South Bank University, London, UK, 2 Great Ormond Street Hospital for Children NHS Foundation Trust GOSH, London, UK BACKGROUND: The cancer journey is complex and involves care interventions from various multisite professionals. The twin tasks of reducing the burdens of care coordination and improving the continuity of care present formidable challenges for parents of children with cancer. The choice of end of life care at home adds to these challenges. There is a need for effective co-ordination. The specialist nurse key worker role has been identified to provide this service. AIM: Evaluation of the role of the key worker in end of life care of children and young people with cancer from parents’ and key workers’ © 2015 The Authors. Psycho-Oncology © 2015 John Wiley & Sons, Ltd.

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perspectives. METHODS: In depth semi-structured interviews with 6 parents and 14 key workers. Data were analysed using framework analysis. RESULTS: Four themes were identified: co-ordination of care; continuity of care; positive relationships and communication. Key workers took the lead in the coordination of resources that enabled parents and children to have their care at home. Key workers’ expertise and delivery of clinical care at home supported parents’ feelings of security. Having a key worker, i.e. a named professional, facilitated health professionals and parents to get to know one another and become emotionally close; continuity of care was highly valued. Positive relationships with the key workers and an open and honest communication supported and reassured parents throughout this phase. CONCLUSIONS: Having a key worker enabled individualised and coordinated support. The key worker knows the family and their needs and this relationship is key to the support given to and received by parents. “I suspect that they knew [I had penile cancer]”: Reflections on health professionals by men diagnosed and treated for penile cancer Branney P1,2, Witty K1,2, White A1,2, Bullen K1,2 1 Leeds Beckett University, Leeds, UK, 2Aberystwyth University, Aberystwyth, UK OBJECTIVES: The UK is unique for treating penile cancer in specialist regional centres and this paper will explore their experiences of interactions with health professionals during their diagnosis, treatment and rehabilitation. DESIGN: PEPC used a one-on-one narrative interview design with maximum variation sampling. METHODS: Twenty-seven interviews were conducted with men across the UK with an average age of 63 years at diagnosis (range = 41–82). The data were analysed using thematic analysis and this paper explores those findings that relate to “professional support” and “messages to professionals” RESULTS: There was “praise for health professionals” and their communication skills, which were at times discounted by examples of what participants felt were insensitivity in the “disclosure of diagnosis”. There were reports that professionals outside the specialist centre (GPs at the stage of diagnosis and district nurses during post-surgical rehabilitation at home) “lacked knowledge” and calls for wider education about penile cancer. CONCLUSIONS: While penile cancer centres can develop specialist expertise this should not be at the expense of interpersonal skills. More broadly, health professionals such as GPs and District Nurses need to enhance communication skills for dealing with conditions new to them, as is likely to occur with rare conditions. Psycho-Oncology 24 (Supp.

1): 1–15 (2015) DOI: 10.1002/pon.3824

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The Curriculum vs. Reality: Discrepant Discourses in Palliative Care Experience, Education and Training Stewart C1, Archer S3 1 Royal Derby Hospital, Derby, UK, 2University of Nottingham, Nottingham, UK, 3Imperial College London, London, UK BACKGROUND: The General Medical Council and UK Department of Health both emphasise the importance of palliative care education and training for all healthcare professionals (HCPs), yet there are large variances in the implementation and provision of this training across the UK. Consequently, many junior doctors report feeling unprepared and unsupported with very little “real life” experience of providing end of life care in nonspecialist settings. AIMS: This study aimed to investigate the experiences of gynaecology HCPs when providing palliative care, and to identify educational variances and other barriers to the provision of palliative care in non-specialist settings. METHODS: Individual semi-structured interviews

© 2015 The Authors. Psycho-Oncology © 2015 John Wiley & Sons, Ltd.

Oral Abstracts

were completed with 12 HCPs from the Gynaecology department of a large tertiary hospital. Interviews were audio-recorded, transcribed verbatim and analysed using Interpretative Phenomenological Analysis (IPA). RESULTS: When providing palliative care, HCPs report significant disparities between what they are taught and what is possible in real life clinical practice. “Curriculum vs. Reality” was therefore identified as a main subtheme within the super-ordinate theme of “Discrepant Discourses”. CONCLUSIONS: The importance of appropriate real life experience for HCPs should not be underestimated, as without it staff report a lack of confidence and sense of discomfort when confronted with dying patients. Furthermore, the current educational curriculum does not address real life limitations such as lack of time and resources, staff shortages, the inability to prioritise dying patients over others, hierarchical restrictions and pervasive negative attitudes, yet these all impact on the provision of palliative care in nonspecialist settings and must be acknowledged.

Psycho-Oncology 24 (Supp.

1): 1–15 (2015) DOI: 10.1002/pon.3824

Poster Abstracts

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Poster Presentations

Psychological well-being in carers of someone with cancer: a process review Young J, Snowden A University of the West of Scotland, Paisley, UK BACKGROUND: There is an overarching focus in the literature on the negative outcomes associated with caring for someone with cancer. There is less understanding around the process that generates, accompanies and maintains positive outcomes within carers. AIM: To review the attributes associated with psychological well-being in carers of someone with a cancer diagnosis. METHODS: A systematic review of the following databases was conducted in accordance with the Preferred Reporting Items in Systematic Reviews and Meta Analyses (PRISMA): Cochrane Library, CRD Database, PubMed, CINAHL, PsycINFO, SocINDEX, Medline and NHS Knowledge Network. RESULTS: The search included studies published in English from 1990 to 2014. 1229 titles were identified. Removal of duplicates, irrelevant papers and those not reporting empirical research left 55 articles. Rodgers’ method of evolutionary concept analysis was used as the theoretical framework in order to focus on the process factors associated with wellbeing in carers. CONCLUSIONS: The key attributes of well-being were: “personal resources”, “finding meaning” and “social context”. Consequences of positive well-being included “discovery of growth”. Many of the subthemes associated with the attributes align with Salovey and Mayer’s theory of emotional intelligence. As this theory suggests that emotional intelligence involves the ability to appraise, express and regulate emotion in the self and others it allows for a testable conceptual model to inform interventions and guide further investigation into carer well-being. A Mixed-Methods Evaluation of Anxiety in Prostate Cancer Patients: Neo-adjuvant Hormones and Radical Radiotherapy Thomason S1, Sundar S2, Buchanan H1 1 The University of Nottingham, Nottingham, UK, 2 Nottingham University Hospitals NHS Trust, Nottingham, UK BACKGROUND: Researchers recognise that anxiety may be highly prevalent amongst patients diagnosed with prostate cancer (PCa). However to-date, no research has considered anxiety in the context of neo-adjuvant hormones and radiotherapy, despite this being a standard treatment option for localised and locally-advanced PCa, and despite © 2015 The Authors. Psycho-Oncology © 2015 John Wiley & Sons, Ltd.

the potential for anxiety to be associated with the delay in definitive treatment. AIMS: To identify the prevalence and potential causes of anxiety amongst PCa patients treated with neo-adjuvant hormones and radiotherapy. METHODS: Patients were invited to complete the HADS and Memorial Anxiety Scale for Prostate Cancer (MAX-PC), and were additionally invited to participate in an interview exploring the causes of any anxiety. RESULTS: 68.4% of patients scored in the normal range on the HADS anxiety sub-scale, 5.3% were identified as having a possible anxiety disorder, and 26.3% a probable anxiety disorder. According to the MAX-PC, 21.1% had clinically significant anxiety. There was also an apparent trend for anxiety to decrease over the course of treatment. Common causes of anxiety included the wait for MRI results, fear of progression (due to delays, and doubts regarding treatment efficacy), and through negative comparisons to others’ experiences. Some patients were reassured by the experiences of others, and treatment explanations provided by HCPs appeared to go some way in alleviating anxiety. CONCLUSIONS: Despite common causes, the experience of anxiety appeared to be specific to the individual. Clinicians should discuss initial preconceptions, challenge misconceptions, and elicit a holistic understanding of how the disease and treatment may lead to potential anxieties. Developing a system for cancer patients to report symptoms and side-effects of treatment online (eRAPID): Patient experiences from a usability study Warrington L, Absolom K, Holch P, Gibson A, Horne B, Carter R, Bamforth L, Velikova G University of Leeds, Leeds, UK BACKGROUND: eRAPID is an online system for patients to report symptoms during and after cancer treatment. For mild symptoms, patients receive automated tailored self-management advice. For more serious symptoms, patients are advised to contact the hospital and an immediate alert is sent to their clinician. Patient’s responses are immediately documented in individual electronic records. eRAPID aims to improve the detection and documentation of treatment-related symptoms and improve patient care. AIM: To assess patient experience of using eRAPID in a small usability study to inform future implementation in an RCT. METHOD: Women receiving adjuvant chemotherapy for early breast cancer used eRAPID for four cycles of chemotherapy (approx. 12 weeks). Psycho-Oncology 24 (Supp.

1): 1–15 (2015) DOI: 10.1002/pon.3824

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Clinicians were asked to use the information during consultations and alerts were sent for severe symptoms. A post-study audio-recorded interview asked patients about their experience of using the system. Interviews were transcribed and analysed thematically using NVivo 10 software. RESULTS: 12 patients took part and 11 were interviewed. Experiences of using eRAPID were very positive; most described it as “reassuring” and “comforting”. Patients valued the self-management advice, particularly the specific feedback on timely and appropriate hospital contact, as they often lacked confidence in making this decision. Some patients found the graphing feature useful to identify symptom patterns to aid self-management. CONCLUSION: eRAPID has the potential to improve patient’s self-efficacy, knowledge and confidence with managing symptoms during treatment. During a large-scale RCT, we will explore the relationship between these variables and patients utilisation of the eRAPID system, self-management advice and symptom graphs. Consider Levitiracetam as a potentially reversible cause of significant fatigue in patients with a stable primary brain tumour. Day J1, Ingle H1, Tuck S3, Erridge S2, Peoples S2, Grant R2 1 University of Edinburgh, Edinburgh, UK, 2 Edinburgh Centre for Neuro-Oncology, Edinburgh, UK, 3Wellcome Trust Clinical Research Facility, Edinburgh, UK INTRODUCTION: Fatigue is common in patients with a primary brain tumour. In a previous study, we found a significant relationship between fatigue severity and the use of the anti-epileptic drug (AED) Levitiracetam (p = 0.008), compared to other AEDs. Most AEDs act on sodium channels in the brain, but Levitiracetam (a NEIAED) has a different mode of action. We performed a secondary analysis of AED use in patients enrolled into a Fatigue causation study in primary brain tumour. METHOD: This is a single-centre prospective cohort study. Patients with imaging stable tumours were assessed using the Brief Fatigue Inventory (BFI) – recorded as nil/mild, moderate or severe. In addition to other analyses, we recorded AED type and dose. We report a planned analysis based on Levitiracetam. RESULTS: Of the 122 participants (Mage = 49 years, SD = 11.4), 90 were taking single (N = 59) or multiple (N = 31) AEDs. 61% of assessable patients reported moderate/severe fatigue.There was no evidence of a relationship between current use of AED and BFI groups (p = 0.724). There was no evidence of a relationship between monotherapy EIAED and monotherapy NEIAED use over BFI groups (p = 0.064). As previously found, there was evidence of a relationship © 2015 The Authors. Psycho-Oncology © 2015 John Wiley & Sons, Ltd.

Poster Abstracts

between Levitiracetam (n = 33) and other AEDs (n = 17) across BFI groups (Chi-Square=7.26; df = 2; p-value = 0.027). CONCLUSION: Fatigue symptoms are a common, debilitating and persistent problem in brain tumour patients. The causes may be multifactorial, but anticonvulsant usage, and Levitiracetam in particular, may be a potentially reversible cause of fatigue in many patients. Eating As Treatment: A stepped wedge multi-centre trial of a psycho-nutrition intervention to improve outcomes in head and neck cancer patients undergoing radiotherapy Britton B1, Baker A1, Bauer J3, Wolfenden L1, Wratten C2, McElduff P1, Carter G1 1 University of Newcastle, Newcastle, NSW, Australia, 2Calvary Mater Newcastle, Newcastle, NSW, Australia, 3University of Queensland, Brisbane, NSW, Australia BACKGROUND: Maintenance of adequate nutrition in head and neck cancer (HNC) patients is challenging. The rigours of radiation treatment and the burden of the malignancy make it difficult to maintain sufficient nutrition. However, health behaviour interventions designed to improve nutrition in HNC patients have not yet been evaluated. AIMS: Building on promising pilot data that found a significant difference in mortality after 3 years, the trial evaluates th METHODS e effectiveness of a dietitian delivered health behaviour intervention: Eating As Treatment (EAT) to reduce malnutrition in HNC patients undergoing radiotherapy. METHODS: The trial utilises a stepped wedge cluster randomised design in which sites begin in the control condition providing treatment as usual. In a randomly generated order, sites receive training in EAT and switch to the intervention condition. EAT is based on established behaviour change counselling methods, including motivational interviewing (MI), cognitive behaviour therapy (CBT) and incorporates systems change theory. Four-hundred HNC patients (Nasopharynx, Oropharynx, Oral Cavity, Larynx, or Hypopharynx), aged 18 + undergoing radiotherapy (>60 Gy) with curative intent will be recruited from radiotherapy departments in five Australian sites. Assessments include a nutrition assessment (PG-SGA), self report depression screen (PHQ-9), treatment interruption and completion, number and length of hospital stays and dietetic contacts. Important covariates include mucositis; dysphagia; tumour site; stage; chemotherapy; surgery; radiotherapy; and presence of a feeding tube. Main outcomes are nutritional status, depression and mortality. If shown to be effective, this treatment has the potential to change dietetic practice with HNC patients and improve radiation therapy treatment outcomes. Psycho-Oncology 24 (Supp.

1): 1–15 (2015) DOI: 10.1002/pon.3824

Poster Abstracts

Supervised exercise for older women treated for breast cancer. Preliminary results from a pilot randomised controlled trial. Kipling K1, McCluskey S1, Kirshbaum M2, Garbutt G1, Boduszek D1 1 University of Huddersfield, West Yorkshire, UK, 2 Charles Darwin University, Northern Territories, Australia BACKGROUND: There is compelling evidence of the benefits of exercise in cancers survivors and older populations but very limited research on exercise interventions conducted with older breast cancer survivors. AIMS: The study investigated whether a supervised exercise intervention (1 9 week) and home based (2 9 week) lasting 12weeks with older women treated for breast cancer (>60 years) during and post-adjuvant therapy improved functional capacity (walking ability), body composition, quality of life (QoL) and levels of physical activity over 12 months. METHODS: A pilot randomised controlled trial assigned 35 recently diagnosed female breast cancer patients (mean = 67 years; SD = 5.02) to either a supervised exercise intervention (n = 17) or a control group (n = 18). Outcome measures were assessed at baseline, 3, 6 and 12 months. RESULTS: Preliminary analyses of walking distance, body composition and physical activity for the first 3 months of the study were conducted. The intervention group significantly increased their walking distance (p < 0.001) and their physical activity levels (p < 0.05) but there were no significant differences in body composition between groups. The control group also significantly increased their walking distance (p < 0.01). CONCLUSION: The intervention group significantly improved walking distance and daily levels of physical activity over 3 months with no adverse events reported. It will be interesting to observe whether these changes can be maintained to have a positive effect on health, functional capacity and QoL and whether this increase in daily physical activity levels will have any effect on body composition. Illness representations and psychological wellbeing in cancer patients and survivors: a systematic review of prospective and interventional studies Carruthers S1, Bryant L1, Ashley L2 1 University of Leeds, Leeds, UK, 2Leeds Beckett University, Leeds, UK BACKGROUND: Over the last 15 years, studies in numerous diseases have found cognitive and emotional illness representations (a patient’s beliefs and feelings about their illness) to explain a significant proportion of the variance in a range of psychosocial outcomes, even after controlling for sociodemographic and clinical predictors. A © 2015 The Authors. Psycho-Oncology © 2015 John Wiley & Sons, Ltd.

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growing number of studies now also suggest that interventions can be effective in modifying maladaptive illness representations and improving patient outcomes. More recent research has extended these findings to oncology. As such, illness representations are one potentially modifiable predictor of psychological wellbeing among cancer patients and survivors. AIMS: To undertake a systematic review to synthesise and critically appraise empirical research which has: (1) investigated whether illness representations predict future psychological wellbeing in adult cancer patients and survivors, and/or (2) tested interventions to modify illness representations and improve psychological wellbeing within this population. METHODS: Studies will be identified by multiple search strategies (e.g. electronic databases, reference lists of retrieved papers). SC and LA will independently review studies for inclusion and extract data; discrepancies will be resolved by discussion among all authors. The methodological quality of the studies will be assessed. If appropriate, evidence synthesis will include meta-analysis. RESULTS: This review is on-going; preliminary findings will be presented. CONCLUSIONS: This review will address the following questions: Are illness representations prospectively associated with psychological wellbeing in cancer patients and survivors? Which representations are most strongly predictive? Can interventions modify illness representations and improve psychological wellbeing in this population? What factors contribute to the effectiveness of these interventions? “You’re actually mourning a loss”: Breast cancer patients’ experiences of a camouflage based support service for treatment-related hair loss Pilkington M1, Rumsey N1, O’Connor D2, Brennan J3, Harcourt D1 1 University of the West of England, Bristol, UK, 2 Univeristy of Leeds, Leeds, UK, 3Chartered Clinical Psychologist, Bristol, UK BACKGROUND: hair is an integral part of identity and for breast cancer patients it’s loss can have a significant impact on their quality of life. Little research has evaluated the efficacy of interventions to support those affected by treatment-related hair loss, or explored users’ experiences of such services and the extent to which they meet their needs. HeadStrong is a volunteer-led service offering information and support in the use of headwear to camouflage hair loss. AIM: to explore breast cancer patients’ experiences of hair loss, their support needs and experiences of the HeadStrong service. METHOD: participants were recruited through the national charity, Breast Cancer Care which offers the HeadStrong service. 25 interviews were conducted and subjected to thematic analysis. Psycho-Oncology 24 (Supp.

1): 1–15 (2015) DOI: 10.1002/pon.3824

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RESULTS: three main themes emerged: experiencing the challenges of hair loss, the benefits of receiving support for treatment-related hair loss and unmet emotional needs. Distress around hair loss began when individuals first anticipated that they might lose their hair. Participants found that the advice and information offered to them through HeadStrong helped to increase feelings of control and confidence. However, some would have preferred the HeadStrong session to be tailored more to their individual needs, including emotional needs. CONCLUSIONS: this study provides an important insight into women’s experiences of HeadStrong, demonstrating that it can be a helpful intervention. However, as support needs vary between individuals and over time, it is important that patients are equipped with a toolbox of strategies to help them to manage all aspects of hair loss. RESTORE: an exploratory RCT of a web-based intervention to enhance self-efficacy to self-manage cancer-related fatigue: findings from a qualitative process evaluation Myall M, May C, Grimmett C, Calman L, Richardson A, May C, Foster C University of Southampton, Southampton, UK BACKGROUND: Process evaluations can provide valuable information about complex healthcare interventions and trial processes. AIMS: This process evaluation sought to explore the feasibility and acceptability of an exploratory randomised controlled trial of RESTORE: a web-based intervention to enhance self-efficacy to manage cancer related fatigue. Participants were randomised to the RESTORE web-resource or the Macmillan Coping with Fatigue leaflet. METHOD: Normalisation Process Theory informed data collection and analysis. On completion of the trial, semi-structured telephone interviews were conducted with a purposive sample of participants to explore study participation. Interviews were analysed using directed content analysis with a Framework Approach. RESULTS: 19 participants took part in the process evaluation. Most felt that they benefited from taking part in the trial and reported making positive lifestyle changes. They understood the purpose and requirements of the trial and the majority could accommodate the work of the trial into daily routines without learning new skills. Time since diagnosis and treatment affected the perceived value of the information presented in RESTORE, seeming more relevant to those most proximal to treatment completion. Factors related to the participant, constraints of the intervention, and environmental context inhibited the integration and embedding of RESTORE into everyday life. Participants held preferences for mode of delivery of information, © 2015 The Authors. Psycho-Oncology © 2015 John Wiley & Sons, Ltd.

Poster Abstracts

e.g. leaflet vs. web-based RESTORE. CONCLUSION: Participants derived benefits from the RESTORE resource but barriers to implementation and integration suggest that refinements to RESTORE and the trial processes are necessary before testing in a phase III trial. The AVALPROFS study: Assessing the VALue of PROgression Free Survival Catt S1, Jenkins V1, Matthews L1, McKenzie M2, Garth J2, Fallowfield L1 1 Brighton & Sussex Medical School, University of Sussex, Brighton, UK, 2Independent Cancer Patients’ Voice ICPV, London, UK BACKGROUND: Palliative treatment goals are to improve quantity and/or quality of life (QoL). Use of progression-free survival (PFS) as the primary end point in trials of new cancer therapies is contentious. This is because not all improvements in PFS result in extended life and proof that PFS leads to improved QoL is limited, yet PFS is underpinning new drug approvals. Therefore the value of PFS to patients warrants comprehensive investigation. The AVALPROFS study sets out to do this and we report on its pilot phase. AIMS: Develop materials & methods to investigate potentially sensitive issues underlying the value of PFS. METHODS: Study design and contents of semistructured interviews were developed with a patient advisory group drawn from members of Independent Cancer Patients’ Voice (ICPV). These interviews, validated QoL measures and a tool capturing trade-off between time a therapy controls the cancer and a worst side effect were tested with patients. RESULTS: 11/19 patients approached with metastatic cancer participated, 6 females/5 males, mean age 59 years. They gave constructive feedback about the interviews, QoL measures, and indicated preference for a trade-off tool with predefined response scale options over a visual sliding scale. Four interview schedules were developed: pre-treatment, on-treatment, at unacceptable toxicity and at disease progression. Questions covered treatment information provision, aims & benefits, understanding of PFS, preferences for quality vs. quantity of life, views & experiences of side-effects. CONCLUSIONS: Collaborative working with ICPV and piloting with patients enabled initiation of this potentially difficult but essential longitudinal study which is now recruiting.

Psycho-Oncology 24 (Supp.

1): 1–15 (2015) DOI: 10.1002/pon.3824

Poster Abstracts

An exploratory study of Reiki experiences in women living with cancer Stead M1, Kirshbaum M2, McCluskey S2 1 Alexandra House Holistic Health and Wellbeing Spa, Huddersfield, UK, 2Centre for Applied Psychological and Health Research, Institute for Research in Citizenship and Applied Human Sciences IRCAHS, University of Huddersfield, Huddersfield, UK BACKGROUND: There is limited empirical evidence demonstrating the efficacy of Reiki in cancer care. As the demand for complementary therapies increases, there is a growing need for wider investigation of how Reiki is experienced. AIMS: The study aimed to explore and document perceptions and experiences of Reiki for women living with cancer in order to inform the development of appropriate outcome measures for a larger intervention study. METHODS: An exploratory, qualitative study based on semi-structured interviews of ten participants was conducted. The interviews were recorded, transcribed and analysed using Framework Analysis. RESULTS: Key themes identified were: • limited understanding of Reiki prior to receiving Reiki • release of emotional strain during Reiki - feelings of a release of energy, a clearing of the mind from cancer, inner peace/relaxation • experience of physical sensations during Reiki • physical, emotional and cognitive improvements after Reiki overall positive experience of Reiki. CONCLUSIONS: The physical and psychological impact of Reiki was revealed in this study. Findings suggest that Reiki could be a beneficial tool in the self-management of quality of life issues for women with cancer. Previous Reiki research has used quality of life tools that measure general symptoms and psychosocial issues such as changes in “mood” or “anxiety”, but not more complex issues such as release of emotional strain or body sensations such as energy release. Our study demonstrates that future Reiki research should choose assessment methods that allow the more complex psychosocial issues to be measured and reported in more detail.

Developing and piloting a questionnaire to investigate important psychosocial outcomes in survivors of childhood and adolescent cancer. Brown M1, Pearce M1, Skinner R2 1 Newcastle University, Newcastle upon Tyne, UK, 2 Great North Children’s Hospital, Newcastle upon Tyne, UK BACKGROUND: It is rare for studies of long-term psychosocial outcomes in childhood and © 2015 The Authors. Psycho-Oncology © 2015 John Wiley & Sons, Ltd.

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adolescent cancer survivors to adopt a holistic approach. In addition, studies often tend to be descriptive as opposed to explanatory and often use generic measures which do not allow for the additional views of the survivor to be taken into account. Doing so would enable a fuller understanding of why and in what way cancer can affect a young person’s life several years after treatment. AIM: To develop and pilot a questionnaire which will investigate the pathways to important psychosocial outcomes in childhood and adolescent cancer survivors. METHODS: This study builds on previous qualitative work carried out by the researchers which gained an insight into how survivors perceive cancer to have influenced their lives. A review of the literature was also undertaken to identify important psychosocial outcomes and their proposed determinants. Following on from this, suitable measures were identified for inclusion and where no suitable questionnaire items existed, these were developed specifically for this study. Content validation was requested from health care professionals. We will be gaining the views of a small sample of survivors on the questionnaire before piloting it in a larger sample (n = 50) in early 2015. The final questionnaire will be an important component in a future large-scale study which aims to investigate and determine the important pathways to long-term psychosocial outcomes in young survivors. This pilot will provide useful information on the acceptability and feasibility of undertaking such a study. Instruments to record acute and late adverse events (AE) associated with radical prostate cancer treatment for remote monitoring in clinical practice: A systematic review of randomised controlled trials (RCT). (Grant Reference Number RP-PG-061120008). Holch P1, Henry A2, Franks K2, Davidson S3, Routledge J3, Shearsmith L1, Gilbert A1, Ingleson E1, Albutt A1, Velikova G1 1 University of Leeds, Leeds, West Yorkshire, UK, 2 Leeds Teaching Hospitals Trust, Leeds, West Yorkshire, UK, 3The Christie NHS Foundation Trust., Manchester, Lancashire, UK BACKGROUND: Radical radiotherapy (RT) for both early and locally advanced prostate cancer is a commonly used primary treatment. Clinically AE are rarely systematically recorded and when late effects develop centralised follow up is infrequent. A feasible cost-effective model to allow remote measurement of RT AE is required. eRAPID is a web-based electronic patient reporting system including severity linked alerts/self-management advice (Velikova 2012, Ziegler, Holch 2013) (an RCT assessing feasibility in systemic therapy is underway). The system is being developed in St Psycho-Oncology 24 (Supp.

1): 1–15 (2015) DOI: 10.1002/pon.3824

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James’s Institute of Oncology and The Christie Manchester for patients undergoing radical prostate cancer therapy. A systematic review of RCTs was undertaken to select appropriate AE measures for self-report. METHOD: MEDLINE, EMBASE and COCHRANE databases were searched using the Centre for Reviews and Dissemination guidance (April-August 2014). RESULTS: 1147 records were screened and 25 RCTs included in the final review. For acute AE only clinician reported instruments were adopted. For late AE coverage of these instruments was augmented with additional items to provide comprehensive AE coverage of sexual functioning and anorectal symptoms. Some late AE were reported using patient-reported-outcome-measures (PROMs) (e.g. SF-36, FACT-P) however a definitive “preferred” instrument was not evident. CONCLUSION: PROMs were not utilised to report acute AE and additional items were added to ensure coverage of late AE suggesting considerable work is required to develop items for prostate patients to self-report in the eRAPID project. Further work will focus on mapping and selecting items onto AE for radical prostate treatment with clinicians (using consensus methodology). Predictors of distress in lung cancer patients: A systematic review. McHugh R, Cousins M, Hulbert-Williams N University of Chester, Chester, UK BACKGROUND: High levels of distress have been identified in a range of cancer patient groups, particularly so during treatment, and in long-term survivorship. Changes in health status, prognosis, identity, and social systems can impact patients significantly, giving rise to numerous psychological health issues. Some studies have indicated that lung, and indeed head and neck, cancer patients report higher levels of distress than patients with other cancer types. AIMS: To systematically review published literature to identify predictors of, and risk factors for, distress in lung cancer patients. METHOD: A systematic literature search was conducted using electronic search engines (CENTRAL, Medline, PsychINFO, CancerLIT, CINAHL and Web of Knowledge) using key words relating to “distress”, “prediction” and “lung cancer”. 14 studies were identified. Standardised quality assessment was conducted in conjunction with data extraction. RESULTS: All included studies used qualitative quantitative self-report designs, and included patients with both small cell and non-small cell lung cancer at varying stages of disease. Emergent themes from this literature identify social support, lack of information regarding treatment and diagnosis, as well as patient age as common predictors of distress. Distress is lower whether there is higher family physician involvement and psychological © 2015 The Authors. Psycho-Oncology © 2015 John Wiley & Sons, Ltd.

Poster Abstracts

intervention services. The most salient predictor was pre-treatment base levels of anxiety and depression. CONCLUSIONS: These results highlight the importance of monitoring psychological susceptibility to distress in the early period following lung cancer diagnosis, especially in patient groups that lack social support networks. Psychological interventions that can lower distress, and improved access to family physicians may also be helpful. Caring for cancer patients with an intellectual disability: Attitudes and care perceptions of UK oncology nurses Flynn S1, Stevens-Gill D2, Bramwell R1, HulbertWilliams L1, Hulbert-Williams N1 1 Chester Research Unit for the Psychology of Health, University of Chester, Chester, Cheshire, UK, 2Department of Psychology, University of Wolverhampton, Wolverhampton, West Midlands, UK BACKGROUND: Caring for cancer patients can be emotionally demanding; as can caring for individuals with intellectual disabilities (ID). Little is known about the combined impact of caring for cancer patients with an ID, though this is expected to be especially challenging. AIMS: Oncology nurses’ care perceptions of patients with and without an ID were explored using an experimental research design. METHODS: Participants (n = 83) were members of the UK Oncology Nursing Society (UKONS); and were mainly female (97.6%), aged between 35 and 54 (79.5%), working within the NHS (90.4%). Using online software, four vignettes (two patients with an ID and two without) were presented to participants, each followed by twelve questions measuring participants’ attitudes, and care perceptions of the fictional patient. Repeated measures ANOVAs tested the main effects of vignette type on care perceptions; interaction effects were explored using mixed methods ANOVAs. RESULTS: Participants felt more positive and confident in their knowledge and training, and better able to care for and communicate with patients without an ID. Caring for a patient with an ID would cause them to feel more stressed. Participants with prior ID experience felt more confident and positive about the vignettes describing patients with an ID, compared to participants with no such experience. CONCLUSIONS: Caring for cancer patients with an ID may intensify an already difficult role, leaving nurses feeling unconfident and stressed. Previous ID experience may mitigate some perceptions and negative consequences; training and knowledge exchange may improve confidence and positivity in caring for this patient group.

Psycho-Oncology 24 (Supp.

1): 1–15 (2015) DOI: 10.1002/pon.3824

Poster Abstracts

The relationship between Changes in ESAS and corresponding Changes in Health-Related Quality of Life Ellis J, McGarragle K, Haddad S, Yoon D, Ehrlich R, Myers J, Al-Allaq Y, Hawkins M, Fitch M, Karanicolas P Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada BACKGROUND: The Edmonton Symptom Assessment System (ESAS) is a symptom-screening tool used to assess physical and emotional distress in cancer patients. Prior research has correlated ESAS with Health-Related Quality of Life (HRQoL) but whether changes in ESAS score reflect corresponding changes in HRQoL is unknown. AIMS: The present study explored the relationship between change in ESAS and change in HRQoL. METHODS: Participants (n = 108) completed ESAS screening and a questionnaire assessing HRQoL at recruitment and again, 2 weeks later. The relationships between ESAS and HRQoL, and between changes in ESAS (physical, emotional, and total subscores) and changes in HRQoL (Physical and Emotional functioning, and Global Health Status), were examined. RESULTS: A significant correlation was found between higher ESAS total and worse overall global health status (r = 0.61; p < 0.0001), and higher ESAS physical symptom scores and ESAS emotional distress scores were significantly correlated with worse physical functioning (r = 0.56; p < 0.0001) and emotional functioning (r = 0.77; p < 0.0001), respectively. Significant correlations were further found between changes in ESAS total score and global health status (r = 0.39; p < 0.0004), ESAS physical symptoms and physical functioning (r = 0.39; p < 0.0003), and ESAS emotional distress and emotional functioning (r = 0.55; p < 0.0001). CONCLUSIONS: Changes in ESAS total score, physical symptom, and emotional distress subscores were significantly correlated with changes in similar domains of HRQoL. Future research should examine the clinical significance of this relationship in terms of tracking symptoms, assessing whether symptom management is adequate, and determining whether or not these changes may be used to predict health outcomes. Advanced cancer and sexuality - the hidden dilemma Colleran M1, Walsh D2, Mannion E3, Waldron D3 1 St. Brigid’s Hospice & Naas General Hospital, Co. Kildare, Ireland, 2Our Lady’s Hospice and Care Services, TCD & UCD, Dublin, Ireland, 3University College Hospital, Galway, Ireland BACKGROUND: the impact of advanced cancer on sexuality is under addressed clinically and in research. Research on the impact of cancer on © 2015 The Authors. Psycho-Oncology © 2015 John Wiley & Sons, Ltd.

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sexuality is mainly focussed on curative and survivorship settings and on hormonal or pelvic cancers. Less is known in an advanced cancer setting. However sexuality is an important aspect of quality of life. AIMS: To assess the opinions of patients with advanced cancer and of the romantic partners of persons with advanced malignancy on therapeutic dialogue with health care professionals about the impact of advanced cancer on sexuality. METHODS: Two separate interview based qualitative studies were preformed in 2006–2007, one on patients and the other on partners. Interviews were recorded, transcribed and analysed. RESULTS: 12 patients and 10 partners were included. The impact of advanced cancer on sexuality was varied and individualised among patients and partners. However both groups largely agreed with patients being given the opportunity to engage in therapeutic dialogue about the impact of advanced cancer on their sexuality. There was a variation in opinions about addressing sexual health concerns with the romantic partners of individuals with cancer. These opinions included a patient proposing that it was important to address partners’ concerns to a partner expressing her belief that engaging in such discussion would serve as a reminder of the loss of physical sexual expression. CONCLUSIONS: Patients and the romantic partners of persons with advanced cancer should be offered the opportunity to discuss emotional and physical intimacy concerns with health care professionals if wished. Exploring the Understanding, Perceptions and Experiences of Palliative Care amongst Women with Advanced Gynaecological Cancer Stewart C1, Archer S0 1 Royal Derby Hospital, Derby, UK, 2University of Nottingham, Nottingham, UK, 3Imperial College London, London, UK BACKGROUND: In the UK, the majority of patients at the end of life are cared for by non-specialist physicians. However, significant deficits in palliative medicine training have been reported by junior doctors, and it is known that there are variations in the understanding and perception of palliative care amongst healthcare professionals. However there is little data on how these differences impact on patient care. AIMS: This study aimed to explore the understanding, perceptions and experiences of patients with advanced gynaecological cancer, specifically related to the care received in different clinical settings. It also aimed to explore factors affecting the understanding of key terms such as “palliative care” and “resuscitation”. METHODS: Individual semi-structured interviews were completed with six women with advanced gynaecological cancer who all received their main treatment in a single tertiary hospital in Psycho-Oncology 24 (Supp.

1): 1–15 (2015) DOI: 10.1002/pon.3824

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England. Interviews were audio recorded, transcribed verbatim and analysed using Interpretative Phenomenological Analysis. RESULTS: Patients gain large amounts of information from the media, and this impacts on their understanding and expectations around hospice care and resuscitation. Despite this, differences were seen in the perceptions and experiences of patients managed in the specialist palliative care setting compared to the gynaecology setting. CONCLUSION: Variances in palliative care education and training needs to be addressed to prevent inequality in care for those patients managed in non-specialist settings. Healthcare professionals need to be aware of the fear and distress often associated with “the hospice”, and the wider impact of the media on patients’ understanding and perception of palliative care. Communication in advanced cancer care: designing a video-based research study Curtin J1, Walthall H1, Wee B2, Watson E1 1 Department of Clinical Health Care, Oxford Brookes University, Oxford, UK, 2Sobell House, Oxford University Hospitals NHS Trust, Oxford, UK BACKGROUND: Video-based research studies have led to a better understanding of healthcare interactions and may contribute to improvements in practice. Studies have suggested that the effect on the doctor-patient relationship is usually minimal. This method has been frequently used in primary care research, however much less so in advanced cancer care research, where participants may be frail and vulnerable. AIMS: To design a video-based research study that is acceptable to participants (patients with advanced cancer, their families and healthcare professionals) and is feasible to conduct in an oncology outpatient clinic. METHODS: A literature review was conducted to identify the attitudes of patients to the video recording of consultations for research purposes. Service user groups from the local cancer network were consulted to explore their concerns of conducting a video based study with oncology outpatients. Cancer healthcare professionals were also involved in the design of the study protocol. Ethnographic data from patients and their families was obtained during recruitment for the study. RESULTS: Video-based research is acceptable to patients with advanced cancer, their families and cancer healthcare professionals. Participants preferred to be able to stop the video recording equipment if it interfered with the patient-doctor interaction. Data management and security were important concerns for participants. Patients commonly mentioned altruism as reason to partake in the study. CONCLUSION: This video-based research study was carefully designed following © 2015 The Authors. Psycho-Oncology © 2015 John Wiley & Sons, Ltd.

Poster Abstracts

stakeholder feedback and subsequently gained NHS research ethical committee approval. Fatigue in advanced cancer: why is it under-reported and poorly managed? Curtin J1, Walthall H1, Wee B2, Watson E1 1 Department of Clinical Health Care, Oxford Brookes University, Oxford, UK, 2Sobell House, Oxford University Hospitals NHS Trust, Oxford, UK BACKGROUND: In patients with advanced cancer, fatigue is a common and distressing symptom with a devastating impact on quality of life. However, some survey data suggests that patients often don’t report the symptom to their doctor and the reasons for this are unclear. Additional data suggests that fatigue is not managed well by healthcare professionals, with doctors being the least likely to offer any treatments for fatigue. AIMS: To explore how patients and doctors approach fatigue and to identify communication practices that support the assessment and management of fatigue in advanced cancer. METHODS: A mixed-methods approach will be used and the study is in three parts. The first part will involve video recording up to sixty routine oncology outpatient consultations. Patients will be asked to complete a questionnaire that measures fatigue after the consultation. For the second part, patients with fatigue will be interviewed to gain a broad understanding of their experiences of the symptom. Finally, doctors will be interviewed to gain an understanding of their attitudes and approach to fatigue in advanced cancer. The data will be analysed using a modified grounded theory approach and the video data will be analysed using conversational analysis. The study has NHS research ethical committee approval. RESULTS AND CONCLUSION: Preliminary data will be presented. It is hoped that analysis of the data may identify communication practices that facilitate the effective assessment of fatigue and lead to a better understanding of how best clinicians might offer treatments for fatigue in advanced cancer. An exploration of gender differences in posttraumatic growth in survivors of colorectal cancer Redwood K1, Jenkins K2, Brignell C1 1 University of Southampton, Southampton,UK, 2 Salisbury District Hospital,UK BACKGROUND: Receiving a cancer diagnosis is a highly distressing experience. Despite the negative impact of cancer it is widely reported that surviving cancer can be a catalyst for positive change. Research into posttraumatic growth (PTG) is in its infancy and currently little is known about gender differences and the mechanisms that may lead men Psycho-Oncology 24 (Supp.

1): 1–15 (2015) DOI: 10.1002/pon.3824

Oral Abstracts

and women to perceive growth differently. The present study aimed to explore gender differences in self-reported PTG survivors of colorectal cancer. It also aimed to examine the role of social support and cognitive processing as mediators in the relationship between gender and PTG. METHOD: A cross-sectional questionnaire design was used to assess self-reported posttraumatic growth, cancer specific distress, perceived social support and cognitive processing in 122 survivors of colorectal cancer. RESULTS: Significant gender differences in PTG and cancer specific distress were found. Social support, distress and cognitive processing were positively correlated with PTG. Regression analysis showed that female gender, having greater social support and engaging in more deliberate rumination predicted increasing levels of PTG. Deliberate rumination and social support mediated the relationship between gender and PTG. CONCLUSION: The findings suggest that gender differences in PTG exist and that social support and cognitive processing have a vital role in facilitating PTG. “We feel forgotten and feel like we represent the lack of hope. When we are remembered, we are recognized as losing the battle”: A focus group study of the experiences of women diagnosed with secondary breast cancer and their psychosocial support needs Baker A1, Phelps C0 1 Abertawe Bro Morgannwg University Health Board, Swansea, UK, 2University of Wales Trinity Saint David, Swansea, UK

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McConnell, 2011). It is now acknowledged that women with secondary breast cancer have a chronic condition and yet in some health boards there are no designated Clinical Nurse Specialists (CNS) to support those women (Reed et al. 2003), and little is known regarding these women’s needs during their experience of secondary breast cancer. AIMS: This focus group study set out to explore how such women make sense of their experience of being diagnosed with secondary breast cancer and to gain understanding of their needs for psychosocial support and information. RESULTS: Analysis of a focus group held with six women following the principles of Interpretative Phenomenological Analysis revealed the women felt unsupported by the care system in comparison to the levels of support received as primary breast cancer patients. Participants talked about the lack of formal support, the stigma of being diagnosed with secondary breast cancer, and the impact of being informed that their cancer was not curable. CONCLUSIONS: This study has implications for the oncology/breast multidisciplinary team regarding the need to bridge the gap that women feel exits between themselves and their oncologist. There is also a clear need to facilitate education training programmes to develop higher level communication skills to improve the patient experience when patients with secondary breast cancer attend for their oncology appointments.

BACKGROUND: Approximately 36,000 women are living with secondary breast cancer in the United Kingdom with 12,000 of these estimated as being in the last year of their life (Maher &

© 2015 The Authors. Psycho-Oncology © 2015 John Wiley & Sons, Ltd.

Psycho-Oncology 24 (Supp.

1): 1–15 (2015) DOI: 10.1002/pon.3824

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Abstracts of the British Psychosocial Oncology Society, 2015 Annual Conference, 19 - 20 March 2015, England, UK.

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