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Objective: Early-onset colorectal cancer (CRC) incidence in adults aged under 50 is increasing. There is a critical lack of knowledge regarding the challenges faced by early-onset CRC patients and their experiences of treatment. The aim of this study was to explore the lived experiences of individuals receiving treatment for early-onset CRC, and the resulting impact on their lives., Methods: Semi-structured interviews of patients with early-onset CRC in the UK (n = 21) were conducted from August 2021 to March 2022. Interviews were recorded and transcribed verbatim. Data were analysed using thematic analysis., Results: Results identified four key themes: (1) early-onset CRC treatment results in sudden physical, psychological and social impacts in all aspects of life; (2) early-onset CRC patients have unique supportive care needs which are not recognised in current practice; (3) there is a need for tailored information; (4) a lack of support was identified in the areas of mental health, sexual health and fertility., Conclusions: Our study highlights numerous unique issues experienced by the early-onset CRC patient group during treatment. There is a need for change in clinical practice, along with the development of international guidelines and tailored resources for both patients and healthcare professionals, in order to improve care., (© 2024 The Author(s). Psycho‐Oncology published by John Wiley & Sons Ltd.)

Objectives: The COVID-19 pandemic placed severe strain on cancer carers resulting in an urgent need for information and support., Methods: The 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., Results: A 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., Conclusions: During 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., (© 2023 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.)

Objectives: Research on the needs of family caregivers of people living with cancer remains disproportionately focused in high income contexts. This research gap adds to the critical challenge on global equitable delivery of cancer care. This study describes the roles of family caregivers of people living with cancer in Vietnam and possible implications for intervention development., Methods: Semi-structured interviews and focus groups with family caregivers (n = 20) and health care providers (n = 22) were conducted in two national oncology hospitals. Findings were verified via workshops with carers (n = 11) and health care professionals (n = 28) in five oncology hospitals representing different regions of Vietnam. Data was analyzed collaboratively by an international team of researchers according to thematic analysis., Results: Family caregivers in Vietnam provide an integral role in the delivery of inpatient cancer care. In the hospital environment families are responsible for multiple roles including feeding, hydration, changing, washing, moving, wound care and security of personal belongings. Central to this role is primary decision making in terms of treatment and end-of-life care; relaying information, providing nutritional, emotional and financial support. Families are forced to manage severe complications and health care needs with minimal health literacy and limited health care professional input., Conclusions: Understanding context and the unique roles of family caregivers of people living with cancer is critical in the development of supportive services. As psycho-oncology develops in low and middle income contexts, it is essential that family caregiver roles are of significant importance., (© 2021 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.)

Objective: Vietnam, like many low/middle income countries, lacks the infrastructure to provide information and psychosocial support to cancer patients and their carers. We undertook a codesign process to develop a web resource to inform and support carers., Methods: Cancer carers and health care professionals' perspectives regarding information and support needs and the content and delivery of web-based supports, were explored via five focus groups (n = 39) and semistructured interviews (n = 4) in Vietnam in 2018. Focus groups and interviews were transcribed verbatim and analyzed using thematic analysis. Resource components were verified at two joint stakeholder workshops attended by 40 participants., Results: The development of a web-based resource was identified as an urgent need. A web-based resource was viewed as a suitable interface to provide support across regions in a sustainable way. The structure of the resource should include peer-led videoed advice, signposting to services and include official endorsement. The potential resource components identified includes (a) cancer causes and consequences; (b) hospital administration, treatment processes, and prices; (c) daily living; (d) emotional and supportive information; (e) skills training; and (f) nutrition and traditional medicine., Conclusion: The development of a web-based resource to deliver information and psychosocial supports to cancer carers and by-proxy patients is an urgent requirement in Vietnam. Next steps will include resource development and testing the resources ability to address the unmet needs of cancer carers and patients. A web-based resource to support cancer carers has the potential for application to other developing countries., (© 2020 John Wiley & Sons, Ltd.)

Background: Increasingly, cancer is recognised as a chronic condition with a growing population of informal caregivers providing care for cancer patients. Informal caregiving can negatively affect the health and well-being of caregivers. We need a synthesised account of best evidence to aid decision-making about effective ways to support caregivers for individuals 'living with cancer'., Objectives: To assess the effectiveness of psychosocial interventions designed to improve the quality of life (QoL), physical health and well-being of informal caregivers of people living with cancer compared with usual care., Search Methods: We searched CENTRAL, MEDLINE, Embase, PsycINFO, ProQuest, Open SIGLE, Web of Science from inception up to January 2018, trial registries and citation lists of included studies., Selection Criteria: We included randomised and quasi-randomised controlled trials comparing psychosocial interventions delivered to adult informal caregivers of adults affected by cancer on a group or individual basis with usual care. Psychosocial interventions included non-pharmacological interventions that involved an interpersonal relationship between caregivers and healthcare professionals. We included interventions delivered also to caregiver-patient dyads. Interventions delivered to caregivers of individuals receiving palliative or inpatient care were excluded. Our primary outcome was caregiver QoL. Secondary outcomes included patient QoL, caregiver and patient depression, anxiety, psychological distress, physical health status and intervention satisfaction and adverse effects., Data Collection and Analysis: Pairs of review authors independently screened studies for eligibility, extracted data and conducted 'Risk of bias' assessments. We synthesised findings using meta-analysis, where possible, and reported remaining results in a narrative synthesis., Main Results: Nineteen trials (n = 3, 725) were included in the review. All trials were reported in English and were undertaken in high-income countries. Trials targeted caregivers of patients affected by a number of cancers spanning newly diagnosed patients, patients awaiting treatment, patients who were being treated currently and individuals post-treatment. Most trials delivered interventions to caregiver-patient dyads (predominantly spousal dyads) and there was variation in intervention delivery to groups or individual participants. There was much heterogeneity across interventions though the majority were defined as psycho-educational. All trials were rated as being at 'high risk of bias'.Compared to usual care, psychosocial interventions may improve slightly caregiver QoL immediately post intervention (standardised mean difference (SMD) 0.29, 95% confidence interval (CI) 0.04 to 0.53; studies = 2, 265 participants) and may have little to no effect on caregiver QoL at 12 months (SMD 0.14, 95% CI - 0.11 to 0.40; studies = 2, 239 participants) post-intervention (both low-quality evidence).Psychosocial interventions probably have little to no effect on caregiver depression immediately to one-month post-intervention (SMD 0.01, 95% CI -0.14 to 0.15; studies = 9, 702 participants) (moderate-quality evidence). Psychosocial interventions may have little to no effect on caregiver anxiety immediately post-intervention (SMD -0.12, 95 % CI -0.33 to 0.10; studies = 5, 329 participants), depression three-to-six months (SMD 0.03, 95% CI -0.33 to 0.38; studies = 5. 379 participants) post-intervention and patient QoL six to 12 months (SMD -0.05, 95% CI -0.37 to 0.26; studies = 3, 294 participants) post-intervention (all low-quality evidence). There was uncertainty whether psychosocial interventions improve patient QoL immediately (SMD -0.03, 95 %CI -0.50 to 0.44; studies = 2, 292 participants) or caregiver anxiety three-to-six months (SMD-0.25, 95% CI -0.64 to 0.13; studies = 4, 272 participants) post-intervention (both very low-quality evidence). Two studies which could not be pooled in a meta-analysis for caregiver physical health status found little to no effect immediately post-intervention and a small intervention effect 12 months post-intervention. Caregiver or patient satisfaction or cost-effectiveness of interventions were not assessed in any studies. Interventions demonstrated good feasibility and acceptability.Psychosocial interventions probably have little to no effect on patient physical health status immediately post-intervention (SMD 0.17, 95 % CI -0.07 to 0.41; studies = 4, 461 participants) and patient depression three to six months post-intervention (SMD-0.11, 95% CI -0.33 to 0.12; studies = 6, 534 participants) (both moderate-quality evidence).Psychosocial interventions may have little to no effect on caregiver psychological distress immediately to one-month (SMD -0.08, 95% CI -0.42 to 0.26; studies = 3, 134 participants), and seven to 12 months (SMD 0.08, 95% CI -0.42 to 0.58; studies = 2, 62 participants) post-intervention; patient depression immediately (SMD -0.12, 95% CI -0.31 to 0.07; studies = 9, 852 participants); anxiety immediately (SMD -0.13, 95% CI -0.41 to 0.15;studies = 4, 422 participants), and three to six months (SMD -0.22, 95% CI -0.45 to 0.02; studies = 4, 370 participants); psychological distress immediately (SMD -0.02, 95% CI -0.47 to 0.44; studies = 2, 74 participants) and seven to 12 months (SMD -0.27, 95% CI -0.78 to 0.24; studies = 2, 61 participants); and physical health status six to 12 months (SMD 0.06, 95% CI -0.18 to 0.30; studies = 2, 275 participants) post-intervention (all low-quality evidence).Three trials reported adverse effects associated with the interventions, compared with usual care, including higher distress, sexual function-related distress and lower relationship satisfaction levels for caregivers, higher distress levels for patients, and that some content was perceived as insensitive to some participants.Trials not able to be pooled in a meta-analysis did not tend to report effect size and it was difficult to discern intervention effectiveness. Variable intervention effects were reported for patient and caregiver outcomes., Authors' Conclusions: Heterogeneity across studies makes it difficult to draw firm conclusions regarding the effectiveness of psychosocial interventions for this population. There is an immediate need for rigorous trials with process evaluations and clearer, detailed intervention descriptions. Cost-effectiveness studies should be conducted alongside future trials.

Objective: To co-design and test the acceptability of a peer-led web-based resource (PLWR) for cancer carers to provide practical and emotional advice on common issues., Methods: A six-step co-design model informed PLWR development. Content was developed through three cancer carer workshops and monthly meetings with an expert advisory team (n = 12). User-testing was conducted via web-based survey and telephone interview. Descriptive statistics and thematic analysis were utilised. Google analytics explored site visits, commonly used components, and time spent using the PLWR., Results: The PLWR was developed to deliver cancer carer information tailored to each stage of the illness trajectory regardless of cancer type, in the form of videoed personal experiences. From November to May 2018, there were 2789 unique visits to the PLWR with 743 returners. The majority of time was spent on the full unclipped peer stories (414 views), and diagnosis-specific information (159 views), with less time spent on bereavement, cancer treatment, or self-care (120 views each). Fifty-five individuals completed the resource evaluation, with 10 participating in telephone interviews. Fifty-four carers rated the resource as excellent, useful, and easy to use. The web-based videos were regarded as convenient as and less burdensome than written information. The resource provided relevant information, potentially reducing isolation and uncertainty., Conclusion: The content and design of the PLWR appear acceptable to cancer carers. The co-design model is an effective way to develop appropriate information for service users and could be utilised as a framework for development of other interventions in a variety of disease groups., (© 2018 The Authors. Psycho-Oncology Published by John Wiley & Sons Ltd.)

Objective: Active surveillance (AS) allows men with favorable-risk prostate cancer to avoid or postpone active treatment and hence spares potential adverse effects for a significant proportion of these patients. Active surveillance may create an additional emotional burden for these patients. The aim of the review was to determine the psychological impact of AS to inform future study in this area and to provide recommendations for clinical practice., Methods: Studies were identified through database searching from inception to September 2015. Quantitative or qualitative noninterventional studies published in English that assessed the psychological impact of AS were included. The Mixed Methods Appraisal Tool was used to assess methodological quality., Results: Twenty-three papers were included (20 quantitative and 3 qualitative). Quantitatively, the majority of patients do not report psychological difficulties; however, when appropriateness of study design is considered, the conclusion that AS has minimal impact on well-being may not be accurate. This is due to small sample sizes, inappropriately timed baseline, and inappropriate/lack of comparison groups. In addition, a mismatch in outcome was noted between the outcome of quantitative and qualitative studies in uncertainty, with qualitative studies indicating a greater psychological impact., Conclusions: Because of methodological concerns, many quantitative studies may not provide a true account of the burden of AS. Further mixed-methods studies are necessary to address the limitations highlighted and to provide clarity on the impact of AS. Practitioners should be aware that despite findings of previous reviews, patients may require additional emotional support., (Copyright © 2016 John Wiley & Sons, Ltd.)

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-P&C is likely to be more suitable for use clinically. At present, the NAFC-C demonstrates a great potential in both the research and clinical environments; 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.)

This study aimed to measure the health status and care needs of people who provide informal care to cancer survivors in the UK. Semi-structured interviews were conducted with a purposive sample of 24 cancer professionals to identify the care needs of caregivers. In addition, we conducted a postal survey measuring the health and well-being [36-item short-form health survey (SF-36)] and health service utilisation of 98 primary caregivers of a random sample of cancer survivors, 2-20 years post-treatment. Interviews indicated that caregivers' needs were largely unmet. In particular, there appeared to be a need in relation to statutory healthcare provision, information, psychological support and involvement in decision-making. There were no significant differences between survivors and caregivers in terms of mental health scores; and caregivers performed better on physical health domains compared with cancer survivors. Compared with UK norms and norms for caregivers of other chronic conditions, cancer caregivers had substantially lower scores on each SF-36 health domain. Cancer may impact negatively on an informal caregiver's health long after treatment has ended. Providing appropriate and cancer-specific information may alleviate difficulties and improve health and well-being. Specific concentration should be given to the development and delivery of information support for caregivers of post-treatment cancer survivors., (© 2013 John Wiley & Sons Ltd.)

Objective: Cancer survivors (CSs) are at risk of developing late effects (LEs) associated with the disease and its treatment. This paper compares the health status, care needs and use of health services by CSs with LEs and CSs without LEs., Methods: Cancer survivors (n = 613) were identified via the Northern Ireland Cancer Registry and invited to participate in a postal survey that was administered by their general practitioner. The survey assessed self-reported LEs, health status, health service use and unmet care needs. A total of 289 (47%) CSs responded to the survey, and 93% of respondents completed a LEs scale., Results: Forty-one per cent (111/269) of CSs reported LEs. Survivors without LEs and survivors with LEs were comparable in terms of age and gender. The LEs group reported a significantly greater number of co-morbidities, lower physical health and mental health scores, greater overall health service use and more unmet needs. Unadjusted logistic regression analysis found that cancer site, time since diagnosis and treatment were significantly associated with reporting of LEs. CSs who received combination therapies compared with CSs who received single treatments were over two and a half times more likely to report LEs (OR = 2.63, 95% CI = 1.32-5.25) after controlling for all other variables., Conclusions: The CS population with LEs comprises a particularly vulnerable group of survivors who have multiple health care problems and needs and who require tailored care plans that take account of LEs and their impact on health-related quality of life., (Copyright © 2013 John Wiley & Sons, Ltd.)