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ObjectivesThe COVID-19 pandemic placed severe strain on cancer carers resulting in an urgent need for information and support.MethodsThe Santin 2019 6-step co-design model was used to rapidly modify an existing online cancer carers resource. Draft content of a COVID-19 module was created via two workshops and six meetings with an expert advisory team (Step 1). This content was then produced into videoed testimonials (Step 2). A module prototype was reviewed by volunteers (Step 3) and modified based on feedback (Step 4). User-testing occurred via two online feedback sessions (Step 5) and modifications were made (Step 6). All steps were audio recorded, transcribed verbatim and analysed thematically.ResultsA COVID-19 support, and information module was rapidly co-designed by n = 45 stakeholders (n = 11 workshop 1 and 2 (3 carers/14 professionals), n = 6 advisory committee (1 carer/5 professionals), n = 4 video content (1 carer/3 professionals) and n = 24 feedback sessions (5 carers/19 professionals). The module contained vaccination information, infection control and how to manage the psychosocial impact of restrictions. Information was delivered in 4 short videos with links to up-to-date guidance and information services. Participants identified that the module included all key information for carers in an accessible and informative way. The use of videos was viewed as an emotive and reassuring.ConclusionsDuring a global pandemic, cancer carers urgently required tailored information. Co-designed online resources allow service providers to rapidly respond to emerging and unprecedented issues and provide urgent information and support.

Background Cancer diagnosis, treatment and survivorship is multifaceted, and the cancer patient experience can serve as a key indicator of healthcare performance and quality. The purpose of this paper was to analyse free-text responses from the second Northern Ireland Cancer Patient Experience Survey (NICPES) in 2018, to understand experiences of care, emerging themes and identify areas for improvement. Methods A 72-item questionnaire (relating to clinical care experience, socio-demographics and 3 free-text questions) was distributed to all Health & Social Care Northern Ireland patients that met the inclusion criteria (≥ 16 years old; confirmed primary diagnosis of cancer and discharged between 1st May and 31st October 2017) in June 2018. Participants could complete the questionnaire online or access a free telephone support line if required. Open-ended free text responses were analysed thematically to identify common themes. Free text responses were divided into positive or negative comments. Results In total, 3,748 people responded to the survey, with 2,416 leaving at least one free text comment (69 %). Women aged 55–74 years were most likely to comment. Overall, 3,644 comments were left across the three comments boxes, which were categorised as either positive (2,462 comments; 68 %) or negative / area for improvement (1,182 comments; 32 %). Analysis of free text responses identified six common themes (staff; speed [diagnosis and treatment]; safety; system; support services and specific concerns), which were all related to the overarching theme of survival. Staff was the largest single theme (1,458 responses) with overwhelmingly positive comments (1,322 responses; 91 %), whilst safety (296 negative comments; 70 %) and system (340 negative comments; 81 %) were predominantly negative. Negative comments relating to primary care, aftercare and the cancer system were reported. Conclusions The high response rate to the free text comments indicates patients were motivated to engage. Analysis indicates most comments provided were positive in nature. Most survey respondents reported a positive experience in relation to staff. However, there were a number of areas for improvement including the aftercare experience, and a perceived disconnect between primary care and cancer services. These results can help inform the effective delivery of cancer services in Northern Ireland.

Background Surgical resection remains the only curative treatment for pancreatic cancer and is associated with significant post-operative morbidity and mortality. Patients eligible for surgery, increasingly receive neo-adjuvant therapy before surgery or adjuvant therapy afterward, inherently exposing them to toxicity. As such, optimizing physical function through exercise during treatment remains imperative to optimize quality of life either before surgery or during rehabilitation. However, current exercise efficacy and prescription in pancreatic cancer is unknown. Therefore, this study aims to summarise the published literature on exercise studies conducted in patients with pancreatic cancer undergoing treatment with a focus on determining the current prescription and progression patterns being used in this population. Methods A systematic review of four databases identified studies evaluating the effects of exercise on aerobic fitness, muscle strength, physical function, body composition, fatigue and quality of life in participants with pancreatic cancer undergoing treatment, published up to 24 July 2020. Two reviewers independently reviewed and appraised the methodological quality of each study. Results Twelve studies with a total of 300 participants were included. Heterogeneity of the literature prevented meta-analysis. Exercise was associated with improvements in outcomes; however, study quality was variable with the majority of studies receiving a weak rating. Conclusions High quality evidence regarding the efficacy and prescription of exercise in pancreatic cancer is lacking. Well-designed trials, which have received feedback and input from key stakeholders prior to implementation, are required to examine the impact of exercise in pancreatic cancer on key cancer related health outcomes.

Objectives To describe communication regarding cancer patient’s end-of-life (EoL) wishes by physicians and family caregivers. Methods An online questionnaire and telephone-based surveys were performed with physicians and family caregivers respectively in three teaching hospitals in Colombia which had been involved in the EoL care of cancer patients. Results For 138 deceased patients we obtained responses from physicians and family caregivers. In 32 % physicians reported they spoke to the caregiver and in 17 % with the patient regarding EoL decisions. In most cases lacking a conversation, physicians indicated the treatment option was “clearly the best for the patient” or that it was “not necessary to discuss treatment with the patient”. Twenty-six percent of the caregivers indicated that someone from the medical team spoke with the patient about treatment, and in 67% who had a conversation, caregivers felt that the provided information was unclear or incomplete. Physicians and family caregivers were aware if the patient had any advance care directive in 6% and 26% of cases, respectively, with low absolute agreement (34%). Conclusions There is a lack of open conversation regarding EoL in patients with advanced cancer with their physicians and family caregivers in Colombia. Communication strategies are urgently needed.

Purpose The recent coronavirus pandemic (COVID-19) has affected the delivery of routine cancer care and supportive services. The Macmillan Move More Northern Ireland (MMNI) programme provides access to physical activity and behavioural change support before, during and after cancer treatment. This evaluation details the impact of the pandemic on the MMNI participants and identifies methods to adapt service delivery. Methods A multiple-choice and short answer online survey was sent to 730 MMNI participants, to investigate the impact of the initial, national COVID-19 lockdown. Specifically, the survey examined physical activity patterns, the physical/emotional/social impact of restrictions and attitudes towards digitally supported exercise. Free text responses were analysed thematically with findings verified within the research team. Results 377 participants completed the survey (52% response rate). 50% of respondents had breast cancer, with 36 other diagnoses registered (82% were female). Participants reported physical activity levels decreased during restrictions, citing isolation; declining health/fitness; lack of access and motivation. The dataset trended towards women and those diagnosed with breast cancer. 71% reported the pandemic impacted their physical (n=119) and/or psychosocial (n=231) wellbeing. Many respondents were availing of digitally supported exercise, whilst half of males did not engage (46%). Finally, 80% of respondents were interested in using a MMNI smart application. Conclusion The COVID-19 pandemic has affected participant physical activity levels. Supervised classes were the most popular (pre-pandemic), with enforced leisure centre closures prompting this reduction. The pandemic has negatively affected the psychosocial wellbeing (mental health) of participants, compounded by the restrictions imposed on the traditional delivery of MMNI. This impact is felt equally across cancer types. Participants with breast cancer are the most engaged in using digital technology to access exercise. Although underrepresented, men require greater targeting to ensure equality in access to online services.

Worldwide cancer incidence is increasing, with viral infections including human papillomavirus (HPV) responsible for a significantly higher number of cancer deaths in low- and middle-income countries (LMICs) when compared to high income countries. Globally, in 2015, there were 72 national HPV vaccination programmes, and 39 demonstration or pilot programmes. Despite HPV’s impact on both sexes, for examples in malignancies such as oropharyngeal cancer (whose incidence is increasing across the world) few countries have a gender-neutral vaccination policy. Herd protection and cost-effectiveness are important considerations in potential extension of vaccination to males and while there is some suggestion that a targeted vaccination programmes for “high risk” groups, such as men-who-have-sex-with-men (MSM) may be preferable, a universal vaccination approach is the best solution to protect both men and women from HPV-related cancer and sexually transmitted disease. Higher incidence of certain HPV-related male cancers, lack of effective treatment, high prevalence of HIV, attitudes to MSM and sexual orientation, all support a universal vaccination strategy for LMICs. Thus, policy-makers and healthcare providers in LMICs need to take timely decisions to “prevent the preventable” by providing vaccination for both girls and boys.

Introduction Dysregulated lipid metabolism is a hallmark of prostate cancer. Furthermore, use of the cholesterol lowering statin drugs has been linked to a reduced risk of lethal prostate cancer. To understand the molecular pathways implicated in this relationship, we examined the association between differential expression of genes involved in intratumoral cholesterol metabolism in prostate tumor biopsies and prostate cancer-specific outcomes. Methods Tumor biopsy gene expression data from 242 men diagnosed with localized/locally advanced prostate cancer and treated with radiotherapy and androgen deprivation therapy was analyzed. A total of 71 genes involved in cholesterol transport, biosynthesis and regulation were selected from the Reactome pathway database, with additional genes involved in cholesterol metabolism extracted from literature. For each gene, expression levels were dichotomized by median expression level. Cox proportional hazards regression was used to estimate hazard ratios (HR) and 95% confidence intervals (CI) for associations of gene expression with biochemical recurrence and metastasis. Models were adjusted for age at diagnosis and Gleason score. Multiple-testing correction was performed using the Bonferroni correction method. Results During a median follow-up of 10.4 years, 72 (30%) patients experienced biochemical recurrence and 32 (13%) developed metastatic disease. Differential expression of several genes was found to be associated with risk of biochemical recurrence and metastasis, though none remained statistically significant following Bonferroni correction. However, several genes showed similar patterns of association with risk of biochemical recurrence and of metastasis, an association which remained similar following adjustment for age and Gleason score. Low (below median) expression of FDFT1, a gene encoding squalene synthase, a key enzyme in cholesterol biosynthesis, was associated with an increased risk of biochemical recurrence (HR 1.87; 95% CI, 1.15-3.01) and metastasis (HR 3.52; 95% CI, 1.52-8.16). High (above median) expression of SLCO1B3, a gene encoding an organic anion transporting polypeptide transporting a variety of small molecules including statins, was associated with higher risk of biochemical recurrence (HR 2.14; 95% CI, 1.31-3.49) and metastasis (HR 2.70; 95% CI, 1.25-5.90). Conclusion These hypothesis-generating results point to a potential role for altered intratumoral cholesterol metabolism in prostate cancer-specific outcomes. Our findings highlighting differential expression of FDFT1 and SLCO1B3, genes involved in cholesterol biosynthesis and anion transport, respectively, in association with risk of biochemical recurrence and metastasis may provide clues as to the mechanistic pathways of most importance. Validation in other prostate cancer gene expression datasets is required. Citation Format: Sarah J. Winter, Sophia Halliday, Konrad H. Stopsack, Sarah O. Osman, Alan R. Hounsell, Gillian Prue, Suneil Jain, Emma H. Allott. Cholesterol metabolism gene expression and prostate cancer-specific outcomes in radiotherapy-treated patients [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2021; 2021 Apr 10-15 and May 17-21. Philadelphia (PA): AACR; Cancer Res 2021;81(13_Suppl):Abstract nr 162.

Objective This study aimed to explore the psychological impact of favorable-risk prostate cancer (PCa) and associated treatment (active surveillance [AS] or active treatment [AT]), comparing prevalence and temporal variability of generalized anxiety, PCa-specific anxiety, and depression symptoms. Methods PCa patients were recruited at diagnosis prior to treatment decision-making and completed questionnaires assessing anxiety (State-Trait Anxiety Inventory short form [STAI-6] and Memorial Anxiety Scale for Prostate Cancer [MAX-PC]) and depression symptoms (Centre for Epidemiologic Studies Depression Scale [CES-D]) at four timepoints for 9 months. Non-cancer controls were recruited via university staff lists and community groups. Results were analyzed using analysis of variance. Results Fifty-four PCa (AS n = 11, AT n = 43) and 53 non-cancer participants were recruited. The main effect of time or treatment group were not statistically significant for CES-D scores (P > .05). The main effect of treatment on STAI-6 scores was significant (F2,73 = 4.678, .012) with AS patients reporting highest STAI-6 scores (T1 M = 36.56; T2 M = 36.89, T3 M = 38.46; T4 M = 38.89). There was a significant main effect for time since diagnosis on MAX-PC (F3,123 = 3.68, .01); AS patient scored higher than AT at all timepoints (T1 M = 10.33 vs 10.78; T2 M = 11.11 vs 11.30; T3 M = 13.44 vs 10.55; T4 M = 11.33 vs 8.88); however, both groups declined overall with time. Conclusions Men undergoing AS had significantly higher anxiety symptoms than AT and non-cancer participants, contradicting previous literature. This may be due to perceived inactivity of AS relative to traditional narratives of cancer treatment. Participant experiences appear to be less favorable relative to other international centers. Recommendations for future research and clinical practice include the need to improve diagnosis and treatment information provision particularly for lower risk patients.

Men with metastatic castrate-resistant prostate cancer can experience an array of treatment-related side effects. Accumulating evidence suggests exercise may alleviate some of these adversities and assist in disease management. However, empirical evidence in advanced prostate cancer patients remains limited. The purpose of this study is to determine whether men with metastatic prostate cancer, who are ineligible for high-intensity exercise, can partake in a home-based, moderate-intensity exercise program and the impact of doing so on quality of life and physical fitness parameters. Thirty men with adenocarcinoma of the prostate and progressive systemic, metastatic disease will be recruited. Clinicians will screen patients against inclusion criteria to determine eligibility. All men enrolled will be prescribed a tailored, home-based, moderate-intensity exercise intervention consisting of aerobic and strengthening components for 12 weeks. Patients will receive supplementary education materials and weekly behavioural change consultations throughout the intervention. The primary outcome will be the feasibility of delivering such an intervention in men with metastatic disease. Secondary endpoints including skeletal events will be monitored for safety, as will the feasibility of patient-reported outcome measures and the sampling time points, generating data pertaining to completion rates and potential effect in future trials. General physical fitness will be assessed during these visits, using timed sit-to-stand testing and a 6-min walking test. Prior to each visit, objective physical activity levels will be captured for 7 days using an accelerometer, to determine the feasibility of this technology and the quality of data obtained. In parallel with the feasibility aspects of the trial, changes compared to baseline will be reported. Direct regular contact will also serve as a feedback loop, should any issues arise. This study has received ethical approval from the Office for Research Ethics Committees Northern Ireland. This study aims to determine the potential utility of a home-based exercise intervention in managing side effects associated with advanced prostate cancer and its treatment. This feasibility trial will inform the design and implementation of a larger randomised control trial to determine the efficacy of moderate aerobic and strengthening exercise as an adjuvant therapy in men with metastatic prostate cancer. Collecting such evidence provides further support for exercise in this paradigm and potential for its inclusion as a low-toxicity therapy in standard cancer care, in the longer term. ClinicalTrials.gov, NCT03658486 Trial sponsor: Queen’s University Belfast (Reference: B18/15). Contact: Dr. Paula Tighe, Research and Enterprise, Queen’s University Belfast. Telephone: 02890 973,296. Email: p.tighe@qub.ac.uk . The sponsor reviewed the protocol and ethical application prior to submission. Protocol issue: Version 1 (18th May 2018). Authors: MB, MM, SJ and GP.

The American Academy of Paediatrics (AAP) divides adolescence into early (12-14 years), middle (15-17 years), and late (18-21 years) stages. School-based HPV educational interventions are largely directed at parents of early adolescents at the time of vaccination. As the average age of first sexual intercourse in high income countries is 15-17 years old, a second educational intervention for middle adolescents could have a strong impact on HPV prevention, providing an opportunity for self consenting to HPV vaccination in many countries. This paper appraises literature exploring the impact of school-based educational interventions in 15-17 year olds, on HPV vaccination uptake and/or perceptions/knowledge of HPV and its associated cancers. Randomised controlled trials (RCTs) and quasi-experimental designs (QEDs) (2007-2019) were included if they delivered a school-based educational intervention for 15-17 year olds, and the outcome measures included HPV vaccination uptake, knowledge of HPV and associated cancers or perception/attitude regarding self-protection against HPV. Fifteen studies met the inclusion criteria and were assessed for quality using the Quality Assessment Tool for Quantitative Studies. All studies demonstrated a statistically significant improvement in at least one major outcome measure postintervention, despite the wide range in design of interventions, though only three studies actually measured changes to HPV vaccination uptake. Stakeholder engagement was absent in most intervention designs and many were not rounded in evidenced theory. Content was largely focused on female cervical cancer, rarely discussing oropharyngeal cancer, the most pre-dominant HPV-associated cancer in men. An optimal mixed gender intervention remains to be established for middle adolescents.

AIM: Little is known about how patient groups provide information for patients. We invited 838 patient groups from Europe and North America to participate in an online survey.METHODS: The survey covered: (i) availability, accessibility and quality of information provided; (ii) methods by which patient groups communicate; (iii) ways in which patient groups acquire information and confirm its veracity/accuracy; (iv) how people access information online.RESULTS: European patient groups were significantly less effective in providing medical-related information than their North American counterparts in: clinical trials, potential causes of cancer, medical research, diagnosis/screening, symptoms, treatments (all p < 0.0001); Recommendations of best practice/care (p < 0.03), healthcare services(p = 0.029) and complimentary medicine (p = 0.01). Clinical trials (p = 0.0006), medical research (p = 0.006) and diagnosis/screening (p = 0.0024) were also areas where North American patients were more likely to require medical-related information. Similar patterns emerged for non-medical information with nutrition (CONCLUSION: These results emphasise the more mature nature of cancer patient engagement/information provision in North America, providing valuable insights and guidance to inform development of more robust and effective cancer patient information communication platforms in Europe.

Literature has shown that participation in physical activity is associated with a reduction in the incidence of certain cancers. Physical activity levels across the life course are low. Since cellular damage from an inactive lifestyle accumulates over time, promoting physical activity from childhood is fundamental for cancer prevention. To date, interventions to promote physical activity in children have been unsuccessful over the long term. Physical activity can be accrued through several domains including sport and active play. Research suggests that sport participation and not active play tracks from childhood to adulthood. Active play may be easier to promote because it does not necessitate a certain level of skill or competency, and is enjoyable. The purpose of the present paper is to encourage more research into all areas of active play to increase population physical activity levels across the life course and thus aid in the prevention of specific cancers.

Objective Cancer may impact negatively on an informal caregiver's health long after treatment has ended. This review identifies the self-report measures currently in use to measure caregivers need for support and determines their scientific soundness and clinical utility. Method A systematic electronic database search of Medline, CINAHL, PsychINFO, BNI ProQuest was conducted. The psychometric properties and clinical utility of needs assessment tools for caregivers of cancer survivors (excluding advanced disease) were extracted and summarised. Results Seven cancer survivor caregiver needs assessment tools were identified. Data on instrument development was well reported, although variability was noted in their structure and content. The majority demonstrated some degree of reliability and validity; only two were evaluated for test–retest reliability (CaSPUN and SPUNS) with only the SPUNS showing a high degree of reliability over time. The Health Care Needs Survey (HCNS), Needs Assessment of Family Caregivers-Cancer (NAFC-C) and Cancer Caregiving Tasks Consequences and Needs Questionnaire (CaTCoN) have been validated at various stages of the cancer continuum. Minimal data was available on responsiveness. Conclusion All assessment tools identified require further psychometric analysis. For research purposes, the use of the SPUNS (with its acceptable test–retest reliability) appears most appropriate; although its length may be of concern for clinical use; therefore, the shorter SCNS-PC however, it requires further psychometric testing before it can be fully recommended. Further analysis is necessary on ideal response formats and the meaning of a total needs score. Copyright © 2014 John Wiley & Sons, Ltd.

Human Papillomavirus (HPV) contributes to the most common sexually transmitted infections, with repeated and persistent infection with particular types causing disease in both men and women. Infection with low-risk HPV types can lead to genital warts and benign lesions of the oral cavity, while high-risk types can cause various HPV-related malignancies. The incidence of head and neck cancer has been rising in the past number of decades mostly due to oropharyngeal cancer linked to HPV infection. HPV vaccination has been shown to be effective for cervical and other anogenital HPV-related cancers, and there is significant potential for HPV vaccination to prevent oropharyngeal cancers, given that the HPV types implicated in this disease can be protected against by the HPV vaccine. Few countries have implemented a universal HPV vaccination programme for males and females, with many countries arguing that female only vaccination programmes protect males via herd immunity, and that men-who-have-sex-with-men will be protected via targeted vaccination programmes. We argue these may be limited in their effectiveness. We propose that the most effective, practical, ethical and potentially cost effective solution is universal HPV vaccination that might lead to control of HPV-related diseases in men and women alike. This article is protected by copyright. All rights reserved.

mccaughan e., parahoo k. & prue g. (2011). Comparing cancer experiences among people with colorectal cancer: a qualitative study. Journal of Advanced Nursing67(12), 2686–2695. Abstract Aim. This paper reports on how people with colorectal cancer compare experiences, what comparison meant to them and the context in which it took place. Background. People with cancer need information to make sense of their disease and treatment, and comparing with others in similar situations provides such opportunities. While social comparison studies date back more than half a century, there is a lack of qualitative approaches to explore how people with cancer compare with others and the context in which they do so. Method. In-depth interviews were carried out in the period 2006–2007 with a convenience sample of 24 men and 14 women with a first diagnosis of colorectal cancer. Findings. Most participants could not avoid the almost constant exposure to other people with cancer or hear of their stories, especially when they accessed health services. Comparison was part of their interaction with the ‘community’ of people with cancer, which included giving and receiving information and support. Many valued this ‘experiential’ information, while some tried to avoid contact with others with cancer as they felt that it would depress them. This study also showed that many of the participants had personal experience of caring for close relatives with cancer and this helped them to make sense of their own condition. Conclusion. The challenge for health professionals is to help people with cancer to interpret the information and beliefs they already have from such previous experience or they obtain when comparing with others with cancer.

Research has indicated that individuals with gynecological cancer experience severe fatigue.This longitudinal survey aimed to analyze the fatigue experienced over the course of one year by a gynecological cancer population, to determine if the fatigue was more severe than that reported by females without cancer, and to identify variables associated with cancer-related fatigue (CRF).Data were collected over a 12-month period before, during, and after anticancer treatment. Fatigue was assessed using the Multidimensional Fatigue Symptom Inventory-Short Form. Participants with cancer also completed the Rotterdam Symptom Checklist.Sixty-five cancer patients (mean age = 57.4 years, standard deviation [SD] = 13.9) and 60 control subjects (mean age = 55.4 years, SD = 13.6) participated. Descriptive analysis and repeated measurements modeling indicated that the cancer participants reported worse fatigue than the noncancer individuals before, during, and after anticancer treatment (P0.001) and that the level of fatigue in persons with cancer changed with time (P = 0.02). A forward stepwise regression demonstrated that psychological distress level was the only independent predictor of CRF during anticancer treatment (P0.00), explaining 44% of the variance in fatigue. After treatment, both psychological distress level (P0.00) and physical symptom distress (P = 0.03) were independent predictors of fatigue, accounting for 81% of the variance.Psychological distress level is an important indicator of CRF in gynecological cancer. Interventions focused on the reduction of psychological distress may help alleviate CRF.

Purpose of the researchTo investigate the prevalence and nature of unmet needs among colorectal cancer (CRC) survivors and the relationship between needs and quality of life (QoL).Methods and sampleUsing the Northern Ireland Cancer Registry (NICR) as a sampling frame and working in collaboration with primary care physicians or GPs, the Cancer Survivors Unmet Needs (CaSUN) questionnaire and the Quality of Life in Adult Cancer Survivors Scale (QLACS) were posted to a randomly selected sample of 600 CRC survivors.Key resultsApproximately 69% (413/600) met eligibility criteria for participating in the study; and 30% (124/413) responded to the survey. A comparative analysis of NICR data between respondents and non-respondents did not indicate any systematic bias except that respondents appeared to be younger (65 years vs. 67 years). Approximately 60% of respondents reported having no unmet needs, with 40% reporting one or more unmet health and social care needs such as fear of recurrence, information needs, difficulty obtaining travel insurance and car parking problems. QoL was significantly lower for CRC survivors who reported an unmet need. Highest scores (poorer QoL) were reported for fatigue, welfare benefits and distress recurrence.ConclusionsOverall, the majority of CRC survivors who had care needs appeared to have needs that were mainly psychosocial in nature and these unmet needs were related to poorer QoL.

Fatigue is a frequent complaint of women with cancer. However, the incidence of fatigue has not been well studied, in particular gynaecological cancer, which despite its prevalence has received minimal investigation. The study aims were (1) to explore the symptoms experienced in a gynaecological cancer population, primarily fatigue and (2) to determine the acceptability of a fatigue questionnaire for use in a longitudinal survey. Over the course of 1 month, women with gynaecological cancer attending a Regional Cancer Centre completed a demographic and symptom questionnaire and the Multidimensional Fatigue Symptom Inventory—Short Form (MFSI-SF). Of the 32 individuals approached, 30 agreed to participate (mean age, 61 years; the most common treatment received was surgery followed by chemotherapy n=11; mean time from commencement of treatment, including surgery = 3 months). All participants completed the MFSI-SF. Tiredness was the most commonly reported symptom, experienced by 90% of subjects and the most frequently stated worst symptom, reported by 23.3%. Furthermore, 23 of 27 subjects reported that tiredness interfered completely with their daily living. The MFSI-SF mean total fatigue score was 14.4 (SD 15.9), ranging from −15 to 50. The possible total fatigue score ranges from −24 to 96. Despite the heterogeneous nature of the group, all participants completed the MFSI-SF. The study suggests that fatigue could be a problem for this population group. Thus, a longitudinal survey using the MFSI-SF to investigate the phenomenon further would appear feasible and justified.

Background Worldwide, millions of people with advanced cancer and their family caregivers are experiencing physical and psychological distress. Psychosocial support and education can reduce distress and prevent avoidable healthcare resource use. To date, we lack knowledge from large-scale studies on which interventions generate positive outcomes for people with cancer and their informal caregivers’ quality of life. This protocol describes the DIAdIC study that will evaluate the effectiveness of two psychosocial and educational interventions aimed at improving patient-family caregiver dyads’ emotional functioning and self-efficacy. Methods We will conduct an international multicenter three-arm randomized controlled trial in Belgium, Denmark, Ireland, Italy, The Netherlands, and the United Kingdom. In each country, 156 dyads (936 in total) of people with advanced cancer and their family caregiver will be randomized to one of the study arms: 1) a nurse-led face-to-face intervention (FOCUS+), 2) a web-based intervention (iFOCUS) or 3) a control group (care as usual). The two interventions offer tailored psychoeducational support for patient-family caregiver dyads. The nurse-led face-to-face intervention consists of two home visits and one online video session and the web-based intervention is completed independently by the patient-family caregiver dyad in four online sessions. The interventions are based on the FOCUS intervention, developed in the USA, that addresses five core components: family involvement, optimistic outlook, coping effectiveness, uncertainty reduction, and symptom management. The FOCUS intervention will be adapted to the European context. The primary outcomes are emotional functioning and self-efficacy of the patient and the family caregiver, respectively. The secondary outcomes are quality of life, benefits of illness, coping, dyadic communication, and ways of giving support of the patient and family caregiver. Discussion DIAdIC aims to develop cost-effective interventions that integrate principles of early palliative care into standard care. The cross-country setup in six European countries allows for comparison of effectiveness of the interventions in different healthcare systems across Europe. By focusing on empowerment of the person with cancer and their family caregiver, the results of this RCT can contribute to the search for cost-effective novel interventions that can relieve constraints on professional healthcare. Trial registration Registration on ClinicalTrials.gov on 12/11/2020, identifier NCT04626349. Date and version identifier 20211209_DIAdIC_Protocol_Article.