Co-design and evaluation of a digital serious game to promote public awareness about pancreatic cancer.

BACKGROUND: Pancreatic cancer, ranking seventh in global cancer-related deaths, poses a significant public health challenge with increasing incidence and mortality. Most cases are diagnosed at an advanced stage, resulting in low survival rates. Early diagnosis significantly impacts prognosis, making symptom awareness crucial. Symptoms are often subtle, leading to delayed help-seeking behaviour. Patients and their carers prioritise increased public awareness, indicating a need for innovative approaches to promote awareness of the disease. METHODS: This study employed a quasi-experimental pre-test/post-test design to assess the relationship between a serious game and pancreatic cancer awareness. Members of the public (N = 727) were recruited internationally, via social media and with signposting by relevant organisations. Participants completed measures of symptom awareness and help-seeking intentions before and after playing the game. The serious game, co-designed with experts by lived experience, patient advocates and healthcare professionals, presented participants with a human anatomy diagram, with each section linked to a question about pancreatic cancer. RESULTS: The serious game demonstrated a statistically significant improvement on pancreatic cancer awareness based on matched paired t-tests. Due to missing data, paired comparisons were only possible for 489 cases. Symptom awareness scores exhibited a statistically significant increase from pre-test to post-test, with a large effect size (p < 0.001, d = 1.43). Help-seeking intentions also markedly improved, showing a significant increase from pre-test to post-test, with a large effect size (p < 0.001, d = 1.10). Independent-samples t-tests were also conducted to determine if there were any group differences on pre- to post-test changes based on age, gender, and previous knowledge and/or experience of pancreatic cancer. Participants overwhelmingly endorsed the game's usability and educational value, suggesting its potential as an effective tool for enhancing public awareness and proactive health-seeking behaviour. DISCUSSION: This study is the first to explore a serious game's utility in pancreatic cancer awareness. Results suggest that such interventions can effectively increase public awareness and influence help-seeking intentions. The co-design process ensured content relevance, and participant satisfaction was high. Findings highlight the game's potential as an accessible and convenient tool for diverse populations.

Using a six-step co-design model to rapidly respond to cancer carers support and information needs during a global pandemic.

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.

Feasibility of home-based exercise training during adjuvant treatment for metastatic castrate-resistant prostate cancer patients treated with an androgen receptor pathway inhibitor (EXACT).

BACKGROUND: Exercise is an effective adjuvant therapy that can alleviate treatment-related toxicities for men with prostate cancer (PC). However, the feasibility of delivering exercise training to men with advanced disease and the wider impact on clinical outcomes remain unknown. The purpose of the EXACT trial was to determine the feasibility and effects of home-based exercise training in men with metastatic castrate-resistant prostate cancer (mCRPC). METHODS: Patients with mCRPC receiving ADT + an androgen receptor pathway inhibitor (ARPI) were prescribed 12 weeks of home-based, remotely monitored, moderate intensity, aerobic and resistance exercise. Feasibility was assessed using recruitment, retention and adherence rates. Safety and adverse events were monitored throughout, with functional and patient-reported outcomes captured at baseline, post-intervention and at 3-month follow-up. RESULTS: From the 117 screened, 49 were deemed eligible and approached, with 30 patients providing informed consent (61% recruitment rate). Of those who consented, 28 patients completed baseline assessments, with 24 patients completing the intervention and 22 completing follow-up (retention rates: 86% and 79% respectively). Task completion was excellent throughout, with no intervention-related adverse events recorded. Self-reported adherence to the overall intervention was 82%. Exercise training decreased mean body mass (-1.5%), improved functional fitness (> 10%) and improved several patient-reported outcomes including clinically meaningful changes in fatigue (p = 0.042), FACT-G (p = 0.054) and FACT-P (p = 0.083), all with moderate effect sizes. CONCLUSION: Home-based exercise training, with weekly remote monitoring, was feasible and safe for men with mCRPC being treated with an ARPI. Given that treatment-related toxicities accumulate throughout the course of treatment, and as a result, negatively impact functional fitness and health-related quality of life (HRQoL), it was positive that exercise training improved or prevented a decline in these clinically important variables and could better equip patients for future treatment. Collectively, these preliminary feasibility findings support the need for a definitive, larger RCT, which downstream may lead to the inclusion of home-based exercise training as part of adjuvant care for mCRPC.

Which interventions improve HPV vaccination uptake and intention in children, adolescents and young adults? An umbrella review.

BACKGROUND: Human papillomavirus (HPV) vaccination offers protection against the virus responsible for cervical, oropharyngeal, anal, vulval and penile cancers. However, there is considerable variation across, and even within, countries as to how HPV vaccination is offered and accepted. This review aimed to identify what interventions exist to promote uptake and how effective they are. METHODS: We conducted an umbrella review using the JBI (Joanna Briggs Institute) methodology to evaluate routine or catch-up interventions to increase HPV vaccination uptake and/or intention for children aged 9 years and older, adolescents and young adults up to 26. Comprehensive searches for English language quantitative systematic reviews, published between January 2011 and July 2021, were conducted across five databases. After reviewing titles and abstract, relevant papers were independently assessed in detail. MAIN RESULTS: From 1046 records identified, 10 articles were included in the review. They reported on 95 randomised controlled trials, 28 quasi-experimental studies, 14 cohort studies, 6 non-randomised pretest/post-test studies with control groups, 5 single-group pretest/post-test studies, 1 single-group post-test study and 1 randomised longitudinal study. Some interventions promoted change at the individual, community or organisational level, while others used a multicomponent approach. Face-to-face presentations, printed information and supplementing both strategies with additional components appear effective at increasing vaccination intention, while reminders and multicomponent strategies, especially ones that include some intervention aimed at provider level, appear effective at increasing vaccination uptake. Interventions that did not lead to an improvement in HPV vaccination intention or uptake varied in design and impacts were inconsistent across children/adolescents, young adults or parents. CONCLUSION: The evidence suggests that there is no single solution to increasing vaccination uptake and that different approaches may be better suited to certain populations. However, generalisations are limited by poor reporting and a paucity of studies beyond the USA. Further high-quality studies, therefore, are needed to understand how best to increase HPV vaccination uptake in different target populations.

Psychological aspects of active surveillance.

AIM: The objective of this paper was to discuss the psychological impact of active surveillance (AS) for prostate cancer (PCa) and the resulting implications of psychological wellbeing for treatment decision making and acceptance of AS protocols. METHOD: Qualitative and quantitative research in the area of anxiety, depression, and distress is discussed drawing from PCa literature as well other health conditions from which parallels can be drawn. RESULTS: Attention is given to the role of the clinician in treatment decision making, including the value of information provision, and perceived trust in the AS as a management approach. CONCLUSION: Given that research is conflicted regarding the psychological impact of AS for PCa, it is suggested that focus shifts away from debate of the 'true' experience of AS rather researchers and clinicians should seek to identify the factors associated with positive and negative psychological response to diagnosis and AS to improve psychological and physical outcomes. Recommendations for clinical practice are discussed.

Exercise efficacy and prescription during treatment for pancreatic ductal adenocarcinoma: a systematic review.

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.

Impact of COVID-19 on an established physical activity and behaviour change support programme for cancer survivors: An exploratory survey of the Macmillan Move More service for Northern Ireland.

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.

Exploring patient experiences of cancer care in Northern Ireland: A thematic analysis of free-text responses to the 2018 Northern Ireland Patient Experience Survey (NICPES).

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.

Knowledge of end-of-life wishes by physicians and family caregivers in cancer patients.

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.

Effectiveness of a nurse-delivered (FOCUS+) and a web-based (iFOCUS) psychoeducational intervention for people with advanced cancer and their family caregivers (DIAdIC): study protocol for an international randomized controlled trial.

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.

The development of a web-based resource to provide information and psychosocial support to informal cancer carers in hospitals in Vietnam.

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.

Impact of school-based educational interventions in middle adolescent populations (15-17yrs) on human papillomavirus (HPV) vaccination uptake and perceptions/knowledge of HPV and its associated cancers: A systematic review.

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 post-intervention, 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 grounded 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.

Using a six-step co-design model to develop and test a peer-led web-based resource (PLWR) to support informal carers of cancer patients.

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.

Investigating the psychological impact of active surveillance or active treatment in newly diagnosed favorable-risk prostate cancer patients: A 9-month longitudinal study.

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.

Psychosocial interventions for informal caregivers of people living with cancer.

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.

Using an integrated conceptual framework to investigate parents' HPV vaccine decision for their daughters and sons.

Despite being an effective cancer prevention strategy, human papillomavirus (HPV) vaccination in Canada remain suboptimal. This study is the first to concurrently evaluate HPV vaccine knowledge, attitudes, and the decision-making stage of Canadian parents for their school-aged daughters and sons. Data were collected through an online survey from a nationally representative sample of Canadian parents of 9-16 year old children from August to September 2016. Measures included socio-demographics, validated scales to assess HPV vaccine knowledge and attitudes (using the Health Belief Model), and parents' HPV vaccination adoption stage using the Precaution Adoption Process Model (PAPM; six stages: unaware, unengaged, undecided, decided not, decided to, or vaccinated). 3779 parents' survey responses were analyzed (1826 parents of sons and 1953 parents of daughters). There was a significant association between child's gender and PAPM stage of decision-making, with parents of boys more likely to report being in earlier PAPM stages. In multinomial logistic regression analyses parents of daughters (compared to sons), parents of older children, and parents with a health care provider recommendation had decreased odds of being in any earlier PAPM stage as compared to the last PAPM stage (i.e. vaccinated). Parents who were in the 'decided not to vaccinate' stage had significantly greater odds of reporting perceived vaccine harms, lack of confidence, risks, and vaccine conspiracy beliefs. Future research could use these findings to investigate theoretically informed interventions to specifically target subsets of the population with particular attention towards addressing knowledge gaps, perceived barriers, and concerns of parents.

Active surveillance for favorable-risk prostate cancer: Is there a greater psychological impact than previously thought? A systematic, mixed studies literature review.

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.

A Multiple Streams analysis of the decisions to fund gender-neutral HPV vaccination in Canada.

In Canada, the human papillomavirus (HPV) vaccine is licensed and recommended for females and males. Although all Canadian jurisdictions fund school-based HPV vaccine programs for girls, only six jurisdictions fund school-based HPV vaccination for boys. The research aimed to analyze the factors that underpin government decisions to fund HPV vaccine for boys using a theoretical policy model, Kingdon's Multiple Streams framework. This approach assesses policy development by examining three concurrent, but independent, streams that guide analysis: Problem Stream, Policy Stream, and Politics Stream. Analysis from the Problem Stream highlights that males are affected by HPV-related diseases and are involved in transmitting HPV infection to their sexual partners. Policy Stream analysis makes clear that while the inclusion of males in HPV vaccine programs is suitable, equitable, and acceptable; there is debate regarding cost-effectiveness. Politics Stream analysis identifies the perspectives of six different stakeholder groups and highlights the contribution of government officials at the provincial and territorial level. Kingdon's Multiple Streams framework helps clarify the opportunities and barriers for HPV vaccine policy change. This analysis identified that the interpretation of cost-effectiveness models and advocacy of stakeholders such as citizen-advocates and HPV-affected politicians have been particularly important in galvanizing policy change.

Facilitators' delivery of a psychosocial intervention in a controlled trial for men with prostate cancer and their partners: a process evaluation.

AIM: The aim of this paper was to report the process evaluation of facilitators' delivery of a psychosocial intervention (called CONNECT), in a randomized controlled trial, to men with prostate cancer and their partners. BACKGROUND: There is a lack of information on the process of implementing psychosocial interventions in controlled trials and, in particular, on the role and performance of facilitators who deliver them. Yet, this information is crucial in assessing whether these interventions are effective or not and why. DESIGN: Qualitative design. METHODS: Semi-structured qualitative interviews and diaries were used to collect data (January-October 2012) from four facilitators and a co-facilitator. Data were analysed using the Miles et al. RESULTS: Five themes were discernible. These were 'difficulties to keep to the structure of the intervention', 'selective coverage of topics', 'partner participation', 'overall impression of the group and telephone sessions' and 'perceived benefits to participants'. Issues such as not keeping to the aim of the intervention, deviating from the content and/or reluctance in discussing sensitive issues such as sexual health may mean that the psychosocial effects of the intervention may not have been fully realized. CONCLUSIONS: These findings will be useful for further development and evaluation of the intervention. A tentative conceptual framework of factors, related to facilitators, influencing the fidelity of interventions in the context of controlled trials, is offered. This model, which requires further development and testing, will be useful for researchers worldwide who are involved in developing interventions and training facilitators.