Access, acceptance and adherence to cancer prehabilitation: a mixed-methods systematic review.

PURPOSE: The purpose of this systematic review is to better understand access to, acceptance of and adherence to cancer prehabilitation. METHODS: MEDLINE, CINAHL, PsychINFO, Embase, Physiotherapy Evidence Database, ProQuest Medical Library, Cochrane Library, Web of Science and grey literature were systematically searched for quantitative, qualitative and mixed-methods studies published in English between January 2017 and June 2023. Screening, data extraction and critical appraisal were conducted by two reviewers independently using Covidence™ systematic review software. Data were analysed and synthesised thematically to address the question 'What do we know about access, acceptance and adherence to cancer prehabilitation, particularly among socially deprived and minority ethnic groups?' The protocol is published on PROSPERO CRD42023403776 RESULTS: Searches identified 11,715 records, and 56 studies of variable methodological quality were included: 32 quantitative, 15 qualitative and nine mixed-methods. Analysis identified facilitators and barriers at individual and structural levels, and with interpersonal connections important for prehabilitation access, acceptance and adherence. No study reported analysis of facilitators and barriers to prehabilitation specific to people from ethnic minority communities. One study described health literacy as a barrier to access for people from socioeconomically deprived communities. CONCLUSIONS: There is limited empirical research of barriers and facilitators to inform improvement in equity of access to cancer prehabilitation. IMPLICATIONS FOR CANCER SURVIVORS: To enhance the inclusivity of cancer prehabilitation, adjustments may be needed to accommodate individual characteristics and attention given to structural factors, such as staff training. Interpersonal connections are proposed as a fundamental ingredient for successful prehabilitation.

Symptomatic presentation of cancer in primary care: a scoping review of patients' experiences and needs during the cancer diagnostic pathway.

OBJECTIVES: The objective was to map the experiences and needs of patients presenting with symptoms of suspected cancer in the primary care interval (from when they first present to primary care to their first appointment or referral to a secondary or tertiary level healthcare facility). DESIGN: This was a scoping review. INCLUSION CRITERIA: Studies or reports written in English which included primary data on the primary care interval experiences and/or needs of adult patients presenting with new symptoms of suspected cancer were eligible. Studies which only included patients with secondary or recurring cancer, conference abstracts and reviews were excluded. No date limits were applied. METHODS: The Joanna Briggs Institute method for Scoping Reviews guided screening, report selection and data extraction. At least two independent reviewers contributed to each stage. Medline, CINAHL, PsychInfo, Embase and Web of Science were searched and several grey literature resources. Relevant quantitative findings were qualitised and integrated with qualitative findings. A thematic analysis was carried out. RESULTS: Of the 4855 records identified in the database search, 18 were included in the review, along with 13 identified from other sources. The 31 included studies were published between 2002 and 2023 and most (n=17) were conducted in the UK. Twenty subthemes across four themes (patient experience, interpersonal, healthcare professional (HCP) skills, organisational) were identified. No studies included patient-reported outcome measures. Patients wanted (1) to feel heard and understood by HCPs, (2) a plan to establish what was causing their symptoms, and (3) information about the next stages of the diagnostic process. CONCLUSIONS: Scoping review findings can contribute to service planning as the cancer diagnostic pathway for symptomatic presentation of cancer evolves. The effectiveness of this pathway should be evaluated not only in terms of clinical outcomes, but also patient-reported outcomes and experience, along with the perspectives of primary care HCPs.

Activity and safety of enobosarm, a novel, oral, selective androgen receptor modulator, in androgen receptor-positive, oestrogen receptor-positive, and HER2-negative advanced breast cancer (Study G200802): a randomised, open-label, multicentre, multinational, parallel design, phase 2 trial.

BACKGROUND: The androgen receptor is a tumour suppressor in oestrogen receptor-positive breast cancer. The activity and safety of enobosarm, an oral selective androgen receptor modulator, was evaluated in women with oestrogen receptor (ER)-positive, HER2-negative, and androgen receptor (AR)-positive disease. METHODS: Women who were postmenopausal (aged ≥18 years) with previously treated ER-positive, HER2-negative, locally advanced or metastatic breast cancer with an Eastern Cooperative Oncology Group performance status of 0-2 were enrolled in a randomised, open-label, multicentre, multinational, parallel design, phase 2 trial done at 35 cancer treatment centres in nine countries. Participants were stratified on the setting of immediately preceding endocrine therapy and the presence of bone-only metastasis and randomly assigned (1:1) to 9 mg or 18 mg oral enobosarm daily using an interactive web response system. The primary endpoint was clinical benefit rate at 24 weeks in those with centrally confirmed AR-positive disease (ie, the evaluable population). This trial is registered with ClinicalTrials.gov (NCT02463032). FINDINGS: Between Sept 10, 2015, and Nov 28, 2017, 136 (79%) of 172 patients deemed eligible were randomly assigned to 9 mg (n=72) or 18 mg (n=64) oral enobosarm daily. Of these 136 patients, 102 (75%) patients formed the evaluable population (9 mg, n=50; 18 mg, n=52). The median age was 60·5 years (IQR 52·3-69·3) in the 9 mg group and 62·5 years (54·0-69·3) in the 18 mg group. The median follow-up was 7·5 months (IQR 2·9-14·1). At 24 weeks, 16 (32%, 95% CI 20-47) of 50 in the 9 mg group and 15 (29%, 17-43) of 52 in the 18 mg group had clinical benefit. Six (8%) of 75 patients who received 9 mg and ten (16%) of 61 patients who received 18 mg had grade 3 or grade 4 drug-related adverse events, most frequently increased hepatic transaminases (three [4%] of 75 in the 9 mg group and two [3%] of 61 in the 18 mg group), hypercalcaemia (two [3%] and two [3%]), and fatigue (one [1%] and two [3%]). Four deaths (one in the 9 mg group and three in the 18 mg group) were deemed unrelated to the study drug. INTERPRETATION: Enobosarm has anti-tumour activity in patients with ER-positive, HER2-negative advanced breast cancer, showing that AR activation can result in clinical benefit, supporting further clinical investigation of selective AR activation strategies for the treatment of AR-positive, ER-positive, HER2-negative advanced breast cancer. FUNDING: GTx.

The impact of jejunostomy feeding on nutritional outcomes after oesophagectomy.

BACKGROUND: Nutritional status is compromised long-term following oesophagectomy. Controversy surrounds the optimal route for nutrition support postoperatively and there is wide variation in the use of feeding jejunostomy tubes. METHODS: A retrospective service evaluation was conducted for all consecutive adults who underwent oesophagectomy for a cancer diagnosis within a specialist centre between April 2016 and July 2019 (n = 165). Nutritional and clinical outcomes were compared for patients who received jejunostomy feeding (n = 24), versus those who did not (n = 141). RESULTS: Patients with feeding jejunostomy lost significantly less weight at both 6 and 12 months postoperatively compared to those without jejunostomy (p ≤ 0.001 and p = 0.001, respectively). This remained statistically significant in multiple regression, controlling for age, gender, preoperative tumour staging and adjuvant treatment (p ≤ 0.001 and p = 0.03, respectively). Median length of home enteral feeding was 10 weeks after discharge in the jejunostomy group. We observed minor jejunostomy tube-related complications in four patients (16.7%). Of those readmitted within 90 days of surgery in the non-jejunostomy group, nutritional failure was a factor in 43.2% of these readmissions. "Rescue tube feeding" was required by 8.5% of the non-jejunostomy group within the first postoperative year, including 6.4% within 90 days of surgery. CONCLUSIONS: Use of short-term supplementary jejunal feeding in addition to oral intake after hospital discharge is beneficial for maintaining weight after oesophagectomy. We suggest a future randomised-controlled trial to confirm these findings.

Recruiting women with ductal carcinoma in situ to a randomised controlled trial: lessons from the LORIS study.

BACKGROUND: The LOw RISk DCIS (LORIS) study was set up to compare conventional surgical treatment with active monitoring in women with ductal carcinoma in situ (DCIS). Recruitment to trials with a surveillance arm is known to be challenging, so strategies to maximise patient recruitment, aimed at both patients and recruiting centres, were implemented. METHODS: Women aged ≥ 46 years with a histologically confirmed diagnosis of non-high-grade DCIS were eligible for 1:1 randomisation to either surgery or active monitoring. Prior to randomisation, all eligible women were invited to complete: (1) the Clinical Trials Questionnaire (CTQ) examining reasons for or against participation, and (2) interviews exploring in depth opinions about the study information sheets and film. Women agreeing to randomisation completed validated questionnaires assessing health status, physical and mental health, and anxiety levels. Hospital site staff were invited to communication workshops and refresher site initiation visits to support recruitment. Their perspectives on LORIS recruitment were collected via surveys and interviews. RESULTS: Eighty percent (181/227) of eligible women agreed to be randomised. Over 40% of participants had high anxiety levels at baseline. On the CTQ, the most frequent most important reasons for accepting randomisation were altruism and belief that the trial offered the best treatment, whilst worries about randomisation and the influences of others were the most frequent most important reasons for declining. Most women found the study information provided clear and useful. Communication workshops for site staff improved knowledge and confidence but only about half said they themselves would join LORIS if eligible. The most common recruitment barriers identified by staff were low numbers of eligible patients and patient preference. CONCLUSIONS: Recruitment to LORIS was challenging despite strategies aimed at both patients and site staff. Ensuring that recruiting staff support the study could improve recruitment in similar future trials. TRIAL REGISTRATION: ISRCTN27544579, prospectively registered on 22 May 2014.

Content validity of the EORTC quality of life questionnaire QLQ-C30 for use in cancer.

AIM: The European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (QLQ-C30) is among the most widely used patient-reported outcome measures in cancer research and practice. It was developed prior to guidance that content should be established directly from patients to confirm it measures concepts of interest and is appropriate and comprehensive for the intended population. This study evaluated the content validity of the QLQ-C30 for use with cancer patients. METHODS: Adults undergoing cancer treatment in Europe and the USA participated in open-ended concept elicitation interviews regarding their functional health, symptoms, side-effects and impacts on health-related quality of life. Thematic analysis was conducted, and similarities across cancer types, disease stages and countries or languages were explored. RESULTS: Interviews with 113 patients with cancer (85 European, 28 USA) including breast, lung, prostate, colorectal and other cancers were conducted between 2016 and 2020. Conceptual saturation was achieved. The most frequently reported concepts were included in the QLQ-C30 conceptual framework. QLQ-C30 items were widely understood across language versions and were relevant to patients across cancer types and disease stages. While several new concepts were elicited such as difficulty climbing steps or stairs, weight loss, skin problems and numbness, many were not widely experienced and/or could be considered sub-concepts of existing concepts. CONCLUSIONS: The QLQ-C30 demonstrates good evidence of content validity for the assessment of functional health, symptom burden and health-related quality of life in patients with localised-to-advanced cancer.

Experience, decision-making and information needs around parenteral nutrition among people with advanced cancer, and their carers: A scoping review.

BACKGROUND: The present study aims to summarise current knowledge and identify gaps in knowledge and research regarding experience, decision-making and information needs around parenteral nutrition, among people with advanced cancer, and their carers. METHODS: This review was informed by previous methods and guidance on conducting and reporting scoping reviews. A literature search was conducted in March 2021 using Embase, Medline, CINAHL, Google and Web of Science to identify studies that examined the experience, decision-making process and information needs of adults with advanced cancer, and their carers, who were making decisions around commencing and discontinuing parenteral nutrition. There were no date limitations, although only papers published in English were included. RESULTS: Of the 588 papers identified, 12 papers, all qualitative, met the eligibility criteria. Despite the reported negative aspects of home parenteral nutrition, patients and carers felt the benefits outweighed these. There was variability in whether patients and carers felt involved in decisions around commencing parenteral nutrition. No studies specifically addressed information needs. CONCLUSIONS: Research is required to explore the information that patients with advanced cancer, and their carers, need to facilitate their decision-making around commencing and discontinuing parenteral nutrition. We recommend the development of processes for obtaining written informed consent from patients commencing parenteral nutrition to ensure that core topics are discussed on initiation, enabling patients and carers to make informed decisions. Additionally, we recommend development of a national framework to inform patients and carers of the whole discharge process on PN from decision-making to discontinuing PN.

Health-related quality of life in patients with COVID-19; international development of a patient-reported outcome measure.

BACKGROUND: We aimed to create a questionnaire to assess the health-related quality of life including functioning, symptoms, and general health status of adult patients with current or previous COVID-19. Here, we report on Phase I and II of the development. METHODS: Internationally recognized methodology for questionnaire development was followed. In Phase I, a comprehensive literature review was performed to identify relevant COVID-19 issues. Decisions for inclusion, exclusion, and data extraction were completed independently in teams of two and then compared. The resulting issues were discussed with health care professionals (HCPs) and current and former COVID-19 patients. The input of HCPs and patients was carefully considered, and the list of issues updated. In Phase II, this updated list was operationalized into items/questions. RESULTS: The literature review yielded 3342 publications, 339 of which were selected for full-text review, and 75 issues were identified. Discussions with 44 HCPs from seven countries and 52 patients from six countries showed that psychological symptoms, worries, and reduced functioning lasted the longest for patients, and there were considerable discrepancies between HCPs and patients concerning the importance of some of the symptoms. The final list included 73 issues, which were operationalized into an 80-item questionnaire. CONCLUSION: The resulting COVID-19 questionnaire covers health-related quality of life issues relevant to COVID-19 patients and is available in several languages. The next steps include testing of the applicability and patients' acceptability of the questionnaire (Phase IIIA) and preliminary psychometric testing (Phase IIIB).

Modifiable pre-treatment factors are associated with quality of life in women with gynaecological cancers at diagnosis and one year later: Results from the HORIZONS UK national cohort study.

OBJECTIVE: Personalised care requires the identification of modifiable risk factors so that interventions can be implemented rapidly following a gynaecological cancer diagnosis. Our objective was to determine what pre-treatment factors are associated with quality of life (QOL) at baseline (pre-treatment) and 12 months. METHODS: 1222 women with a confirmed diagnosis of endometrial, ovarian, cervical or vulvar cancer from 82 UK NHS hospitals agreed to complete questionnaires at baseline, three and 12 months. Questionnaires included measures of QOL, health, lifestyle, support and self-management. The primary outcome measure was QOL as measured by Quality of Life in Adult Cancer Survivors (QLACS). Sites provided clinical data at baseline, six and 12 months. Linear regression models were constructed to examine the association between baseline characteristics and QOL outcomes. RESULTS: QOL declined between baseline and 3 months, followed by an improvement at 12 months. Baseline (pre-treatment) factors associated with worse QOL at both baseline and 12 months were depression, anxiety, living in a more deprived area and comorbidities which limit daily activities, whereas higher self-efficacy and age of 50+ years were associated with better QOL. CONCLUSIONS: Depression, anxiety and self-efficacy are modifiable risk factors that can impact on QOL. Screening for these, and assessment of whether comorbidities limit daily activities, should be incorporated in a holistic needs assessment and interventions to improve self-efficacy should be made available. Care can then be personalised from the outset to enable all women with a gynaecological cancer the opportunity to have the best QOL.

Equivalence testing of a newly developed interviewer-led telephone script for the EORTC QLQ-C30.

PURPOSE: The European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life-Core Questionnaire (QLQ-C30) is a widely used generic self-report measure of health-related quality of life (HRQOL) for cancer patients. However, no validated voice script for interviewer-led telephone administration was previously available. The aim of this study was to develop a voice script for interviewer administration via telephone. METHODS: Following guidelines from the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) PRO Mixed Modes Good Research Practices Task Force, a randomised cross-over equivalence study, including cognitive debriefing, was conducted to assess equivalence between paper and telephone administration modes. Assuming an expected intraclass correlation coefficient (ICC) of 0.70 and a minimally acceptable level of 0.50, a sample size of 63 was required. RESULTS: Cognitive interviews with five cancer patients found the voice script to be clear and understandable. Due to a protocol deviation in the first wave of testing, only 26 patients were available for analyses. A second wave of recruitment was conducted, adding 37 patients (n = 63; mean age 55.48; 65.1% female). Total ICCs for mode comparison ranged from 0.72 (nausea and vomiting, 95% CI 0.48-0.86) to 0.90 (global health status/QoL, 95% CI 0.80-0.95; pain, 95% CI 0.79-0.95; constipation, 95% CI 0.80-0.95). For paper first administration, all ICCs were above 0.70, except nausea and vomiting (ICC 0.55; 95% CI 0.24-0.76) and financial difficulties (ICC 0.60; 95% CI 0.31-0.79). For phone first administration, all ICCs were above 0.70. CONCLUSIONS: The equivalence testing results support the voice script's validity for administration of the QLQ-C30 via telephone.

The role of health literacy in cancer care: A mixed studies systematic review.

BACKGROUND: Patients diagnosed with cancer face many challenges and need a good understanding of their diagnosis and proposed treatments to make informed decisions about their care. Health literacy plays an important role in this and low health literacy has been associated with poorer outcomes. The aims of this review are to identify which outcomes relate to health literacy in patients with cancer, and to combine this through a mixed studies approach with the patient experience as described through qualitative studies. METHODS: Four electronic databases were searched in January 2021 to identify records relating to health literacy and patients with cancer. Records were independently screened then assessed for inclusion by two reviewers according to the following criteria: patients aged ≥18 years with cancer, English language publication AND health literacy measured with validated tool and measured outcome associated with health literacy OR qualitative study exploring the role of health literacy as patients make decisions about health. Quality was independently assessed by two reviewers. A narrative synthesis was performed, and findings integrated through concept mapping. This systematic review was registered with PROSPERO, entry CRD42020166454. RESULTS: 4441 records were retrieved. Following de-duplication, 2496 titles and abstracts were screened and full texts of 405 papers were reviewed for eligibility. 66 papers relating to 60 studies met the eligibility criteria. Lower health literacy was associated with greater difficulties understanding and processing cancer related information, poorer quality of life and poorer experience of care. Personal and situational influences contributed to how participants processed information and reached decisions about their care. CONCLUSION: This review highlights the important role of health literacy for patients with cancer. Outcomes are poorer for those who experience difficulties with health literacy. Further efforts should be made to facilitate understanding, develop health literacy and support patients to become more involved in their care.

Nutritional care in colorectal cancer-what is the state of play?

AIM: Nutrition is associated with aetiology and impacts outcomes in colorectal cancer (CRC). This study aimed to explore nutritional symptoms and concerns of patients with CRC and CRC dietetic resource across the UK. METHODS: Study 1 is a descriptive analysis of nutrition-related measures in the ColoRectal Wellbeing (CREW) study, a prospective 5-year longitudinal cohort study of a representative sample of 872 adults with non-metastatic CRC. Study 2 is a descriptive analysis of data collected using a freedom of information request to all UK trusts/boards on dietetic resources for CRC. RESULTS: Study 1 found that 31% of CREW participants wanted more diet and lifestyle advice. At 3 months post-surgery, 10% reported poor appetite. A fifth experienced weight loss and 16% had concerns regarding weight loss 9 months post-surgery. In study 2 just 3% of hospitals providing CRC services had a dedicated CRC dietitian (hepato-pancreato-biliary, 11.1%; head and neck cancer, 14.3%). There was no dietetic outpatient follow-up of CRC patients in 72% of hospitals. CONCLUSIONS: Dietetic resource for patients with CRC is scarce even though weight loss, poor appetite and unmet needs are common and persist over time. Work is needed to embed nutritional care into the management of patients with CRC.

Prevalence and determinants of depression up to 5 years after colorectal cancer surgery: results from the ColoREctal Wellbeing (CREW) study.

AIM: Depression experienced by people with colorectal cancer (CRC) is an important clinical problem affecting quality of life. Recognition of depression at key points in the pathway enables timely referral to support. This study aimed to examine depression before and 5 years after surgery to examine its prevalence and identify determinants. METHOD: The ColoREctal Wellbeing (CREW) study is a prospective UK cohort study involving 872 adults with nonmetastatic CRC recruited before surgery with curative intent. Questionnaires completed before surgery and 3, 9, 15, 24, 36, 48 and 60 months after surgery captured socio-demographics and assessed depression (Centre for Epidemiologic Studies Depression Scale, CES-D) and other psychosocial factors. Clinical details were also gathered. We present the prevalence of clinically significant depression (CES-D ≥ 20) over time and its predictors assessed before and 2 years after surgery. RESULTS: Before surgery, 21.0% of the cohort reported CES-D ≥ 20 reducing to 14.7% 5 years after surgery. Presurgery risk factors predicting subsequent depression were clinically significant depression and anxiety, previous mental health service use, low self-efficacy, poor health, having neoadjuvant treatment and low social support. Postsurgery risk factors at 2 years predicting subsequent depression were clinically significant depression, negative affect, cognitive dysfunction, accommodation type and poor health. CONCLUSION: Depression is highly pervasive in people with CRC, exceeding prevalence in the general population across follow-up. Our findings emphasize the need to screen and treat depression across the pathway. Our novel data highlight key risk factors of later depression at important and opportune time points: before surgery and at the end of routine surveillance. Early recognition and timely referral to appropriate support is vital to improve long-term psychological outcomes.

Health-related quality of life issues, including symptoms, in patients with active COVID-19 or post COVID-19; a systematic literature review.

PURPOSE: This systematic review was performed to identify all relevant health-related quality of life (HRQoL) issues associated with COVID-19. METHODS: A systematic literature search was undertaken in April 2020. In four teams of three reviewers each, all abstracts were independently reviewed for inclusion by two reviewers. Using a pre-defined checklist of 93 criteria for each publication, data extraction was performed independently by two reviewers and subsequently compared and discussed. If necessary, a third reviewer resolved any discrepancies. The search was updated in February 2021 to retrieve new publications on HRQoL issues including issues related to the long-term consequences of COVID-19. RESULTS: The search in April 2020 identified 3342 potentially relevant publications, and 339 publications were selected for full-text review and data extraction. We identified 75 distinct symptoms and other HRQoL issues categorized into 12 thematic areas; from general symptoms such as fever, myalgia, and fatigue, to neurological and psychological issues. The updated search revealed three extra issues experienced during active disease and long-term problems with fatigue, psychological issues and impaired cognitive function. CONCLUSION: This first comprehensive systematic review provides a detailed overview of the wide range of HRQoL issues experienced by patients with COVID-19 throughout the course of the disease. It demonstrates the devastating impact of the disease and provides critically important information for clinicians, to enable them to better recognize the disease and to provide knowledge important for treatment and follow-up. The results provided the foundation for the international development of a COVID-19 specific patient-reported HRQoL questionnaire.

Developing Symptom Lists for People with Cancer Treated with Targeted Therapies.

BACKGROUND: Targeted therapies (TTs) have revolutionised cancer treatment with their enhanced specificity of action. Compared with conventional therapies, TTs are delivered over a longer period and often have unusual symptom profiles. Patient-reported outcome measures such as symptom side-effect lists need to be developed in a time-efficient manner to enable a rapid and full evaluation of new treatments and effective clinical management OBJECTIVE: The aim of this study was to develop a set of TT-related symptoms and identify the optimal method for developing symptom lists. PATIENTS AND METHODS: Symptoms from TT treatment in the context of Chronic Myeloid Leukaemia (CML), HER2-positive breast cancer, or Gastrointestinal Stromal Tumours (GIST) were identified through literature reviews, interviews with healthcare professionals (HCPs) and patients, and patient focus groups. The symptom set was then pilot tested in patients across the three cancer diagnoses: The number of items derived from each source (literature, patients, or HCPs) were compared. RESULTS: A total of 316 patients and 86 HCPs from 16 countries participated. An initial set of 209 symptoms was reduced to 61 covering 12 symptom categories. Patient interviews made the greatest contribution to the item set. CONCLUSIONS: Symptom lists should be created based on input from patients. The item set described will be applicable to the assessment of new TTs, and in monitoring treatment.

Prevalence and predictors of poor sexual well-being over 5 years following treatment for colorectal cancer: results from the ColoREctal Wellbeing (CREW) prospective longitudinal study.

OBJECTIVES: To describe prevalence and predictors of poor sexual well-being for men and women over 5 years following treatment for colorectal cancer. DESIGN: Prospective longitudinal study, from presurgery to 5 years postsurgery, with eight assessment points. Logistic regression models predicted sexual well-being from presurgery to 24 months and 24 months to 60 months; time-adjusted then fully adjusted models were constructed at each stage. SETTING: Twenty-nine hospitals in the UK. PARTICIPANTS: Patients with Dukes' stage A-C, treated with curative intent, aged ≥18 years and able to complete questionnaires were eligible. OUTCOME MEASURES: The dependent variable was the Quality of Life in Adult Cancer Survivors sexual function score. Independent variables included sociodemographic, clinical and psychosocial characteristics. RESULTS: Seven hundred and ninety participants provided a sexual well-being score for at least one time point. Thirty-seven per cent of men and 14% of women reported poor sexual well-being at 5 years. Baseline predictors for men at 24 months included having a stoma (OR 1.5, 95% CI 1.02 to 2.20) and high levels of depression (OR 2.69/2.01, 95% CI 1.68 to 4.32/1.12 to 3.61); men with high self-efficacy (OR confident 0.33/0.48, 95% CI 0.18 to 0.61/0.24 to 1.00; very confident 0.25/0.42, 95% CI 0.13 to 0.49/0.19 to 0.94) and social support (OR 0.52/0.56, 95% CI 0.33 to 0.81/0.35 to 0.91) were less likely to report poor sexual well-being. Predictors at 60 months included having a stoma (OR 2.30/2.67, 95% CI 1.22 to 4.34/1.11 to 6.40) and high levels of depression (OR 5.61/2.58, 95% CI 2.58 to 12.21/0.81 to 8.25); men with high self-efficacy (very confident 0.14, 95% CI 0.047 to 0.44), full social support (OR 0.26; 95% CI 0.13 to 0.53) and higher quality of life (OR 0.97, 95% CI 0.95 to 0.98) were less likely to report poor sexual well-being. It was not possible to construct models for women due to low numbers reporting poor sexual well-being. CONCLUSIONS: Several psychosocial variables were identified as predictors of poor sexual well-being among men. Interventions targeting low self-efficacy may be helpful. More research is needed to understand women's sexual well-being.

Does quality of life return to pre-treatment levels five years after curative intent surgery for colorectal cancer? Evidence from the ColoREctal Wellbeing (CREW) study.

BACKGROUND: The ColoREctal Wellbeing (CREW) study is the first study to prospectively recruit colorectal cancer (CRC) patients, carry out the baseline assessment pre-treatment and follow patients up over five years to delineate the impact of treatment on health and wellbeing. METHODS: CRC patients received questionnaires at baseline (pre-surgery), 3, 9, 15, 24, 36, 48 and 60 months. The primary outcome was Quality of Life in Adult Cancer Survivors (QLACS); self-efficacy, mental health, social support, affect, socio-demographics, clinical and treatment characteristics were also assessed. Representativeness was evaluated. Predictors at baseline and at 24 months of subsequent worsened quality of life (QOL) were identified using multivariable regression models. RESULTS: A representative cohort of 1017 non-metastatic CRC patients were recruited from 29 UK cancer centres. Around one third did not return to pre-surgery levels of QOL five years after treatment. Baseline factors associated with worsened QOL included >2 comorbidities, neoadjuvant treatment, high negative affect and low levels of self-efficacy, social support and positive affect. Predictors at 24 months included older age, low positive affect, high negative affect, fatigue and poor cognitive functioning. CONCLUSIONS: Some risk factors for poor outcome up to five years following CRC surgery, such as self-efficacy, social support and comorbidity management, are amenable to change. Assessment of these factors from diagnosis to identify those most likely to need support in their recovery is warranted. Early intervention has the potential to improve outcomes.

Developing a web-based patient decision aid for gastrostomy in motor neuron disease: a study protocol.

INTRODUCTION: Motor neuron disease (MND) is a progressive, incurable disease, characterised by degeneration of the nerves in the brain and spinal cord. Due to the multisystem effects of the disease, patients are faced with many complex, time-sensitive decisions, one of which is the decision on gastrostomy feeding. There are currently no published decision aids (DAs) to support patients making this decision in the UK. This study will develop and pilot a patient DA to provide evidence-based information on gastrostomy placement and feeding that is relevant to people with MND; communicate the risks and benefits associated with each option; check understanding and clarify personal values and preferences, enabling patients to make a decision congruent with their values and appropriate for them. METHODS AND ANALYSIS: A two-phase process, observing the International Patient Decision Aid Standards, will be used to develop the DA, over 24 months starting January 2019. Phase 1 will use literature reviews and stakeholder interviews and surveys to identify essential content for the DA, and explore the best way to present this. In the second phase, a prototype DA will be developed and revised using stakeholder feedback in an iterative process. Stakeholders will include individuals with MND, their carers and the healthcare professionals working with them. ETHICS AND DISSEMINATION: Ethical approval for the study has been granted by West of Scotland Research Ethics Service, reference 19/WS/0078. Study findings will be disseminated through academic and non-academic publications, conference presentations, stakeholder websites and social media. A feasibility study will follow to explore the acceptability and practicality of the DA for patients, carers and HCPs in practice and to assess whether the DA shows promise of being beneficial for the intended population.

Factors Influencing Global Health Related Quality of Life in Elderly Cancer Patients: Results of a Secondary Data Analysis.

Cancer treatment for elderly patients is often complicated by poor physical condition, impaired functioning and comorbidities. Patient reported health related quality of life (HRQOL) can contribute to decisions about treatment goals and supportive therapy. Knowledge about factors influencing HRQOL is therefore needed for the development of supportive measures and care pathways. An exploratory secondary data analysis on 518 assessments of the European Organisation for Research and Treatment of Cancer (EORTC) core questionnaire (EORTC QLQ-C30) and the elderly module (EORTC QLQ-ELD14) was performed to identify factors predictive for global HRQOL. Preliminary simple and multivariable regression analyses were conducted resulting in a final model comprising sociodemographic and disease specific variables and scales of the QLQ-C30 and QLQ-ELD14. Age, sex and disease related variables explained only part of the variance of global HRQOL (adjusted R2 = 0.203). In the final model (adjusted R2 = 0.504) fatigue, social function, burden of illness and joint stiffness showed possible influence on global HRQOL. Fatigue, social function and burden of illness seem to have the largest impact on global HRQOL of elderly cancer patients. Further prospective studies should examine these domains. Actionable symptoms should be given special attention to initiate targeted supportive measures aiming to maximize HRQOL of older cancer patients.

Differences in change blindness to real-life scenes in adults with autism spectrum conditions.

People often fail to detect large changes to visual scenes following a brief interruption, an effect known as 'change blindness'. People with autism spectrum conditions (ASC) have superior attention to detail and better discrimination of targets, and often notice small details that are missed by others. Together these predict people with autism should show enhanced perception of changes in simple change detection paradigms, including reduced change blindness. However, change blindness studies to date have reported mixed results in ASC, which have sometimes included no differences to controls or even enhanced change blindness. Attenuated change blindness has only been reported to date in ASC in children and adolescents, with no study reporting reduced change blindness in adults with ASC. The present study used a change blindness flicker task to investigate the detection of changes in images of everyday life in adults with ASC (n = 22) and controls (n = 22) using a simple change detection task design and full range of original scenes as stimuli. Results showed the adults with ASC had reduced change blindness compared to adult controls for changes to items of marginal interest in scenes, with no group difference for changes to items of central interest. There were no group differences in overall response latencies to correctly detect changes nor in the overall number of missed detections in the experiment. However, the ASC group showed greater missed changes for marginal interest changes of location, showing some evidence of greater change blindness as well. These findings show both reduced change blindness to marginal interest changes in ASC, based on response latencies, as well as greater change blindness to changes of location of marginal interest items, based on detection rates. The findings of reduced change blindness are consistent with clinical reports that people with ASC often notice small changes to less salient items within their environment, and are in-line with theories of enhanced local processing and greater attention to detail in ASC. The findings of lower detection rates for one of the marginal interest conditions may be related to problems in shifting attention or an overly focused attention spotlight.