Purpose: A diagnosis of testicular cancer (TC) at a relatively young age can have a dramatic impact on the psychological well-being of those affected. The aim of this review was to synthesize recent evidence to provide an updated account of the prevalence, severity and correlates of anxiety, depression, fear of cancer recurrence (FCR) and distress in TC survivors. Patients and Methods: A systematic literature review was conducted from September 2017 until June 2020 using electronic databases including Embase, MEDLINE, PsycINFO, Scopus and Web of Science. Study eligibility and quality were independently assessed by two reviewers. Narrative synthesis was used to depict the severity (mean/median scores), prevalence (proportions above standard clinical thresholds) and correlates of study outcomes. Results: A total of 988 articles were identified for screening after duplicate removal. Fifty-six full-text articles were screened, and eight articles met the inclusion criteria. The reported prevalence of the outcomes varied across studies (clinical levels of anxiety ranged from 6.9% to 21.1%, depression varied from 4.7% to 7%, distress was found between 25% and 41.4%, prevalence of FCR was not reported). Few studies compared TC survivors with other populations. Correlates of poorer psychological outcomes included younger age, relationship status, employment status, poorer sexual functioning, impaired masculinity and coping strategies. Conclusion: Anxiety seems to be the most common issue for TC survivors. Men who are single or unemployed appear most at risk of poorer psychological outcomes, which seem associated with impaired masculinity and sexual function. More research is needed to identify TC survivors most likely to need one of the increasing number of psychological interventions being developed for TC survivors.
There is limited global evidence exploring perceptions of dementia among people with intellectual disabilities. This article presents findings from the first known study where an inclusive research team, including members with intellectual disability, used photovoice methodology to visually represent views of people with intellectual disabilities and dementia. Drawing on Freire’s empowerment pedagogy, the study aims were consistent with global photovoice aims: enabling people to visually record critical dialogue about dementia through photography and social change. We investigated the benefits and challenges of photovoice methodology with this population and sought to identify perspectives of dementia from people with intellectual disabilities. Data collected identified issues such as peers “disappearing” and the importance of maintaining friendship as dementia progressed. Although reaching policymakers is a key aim of photovoice, this may not always be achievable, suggesting that revisiting Freire’s original methodological aims may lead to improved outcomes in co-produced research with marginalized groups.
Background: Testicular cancer and its treatment can have major short- and long-term effects on the health-related quality of life of those affected. This systematic review aims to summarise patient-reported outcome (PRO) data concerning health-related quality of life, functional impacts and common side-effects of treatments for testicular cancer. Methods: We systematically searched Medline OVID, CINAHL, PubMed, Embase and the Patient-Reported Outcomes Over Time In Oncology (PROMOTION) databases from inception to 25 March 2020, using “testicular cancer” and “PRO” search terms developed in conjunction with a medical librarian. Two authors screened abstracts and full-text articles for studies that reported primary PRO data related to the treatment of testicular cancer including at least 50 participants. We excluded psychosocial data as this was included in our companion review. Data were extracted by three reviewers, and quality was assessed by two reviewers using QUAL-SYST. Studies with a quality of score over 65% were included in our narrative synthesis. Results: A total of 1831 records were identified via our database searches and 41 met inclusion criteria. Of these, 35 included participants who had chemotherapy. Twenty-eight different PRO measures were used across the 41 studies. Of the 41 studies, 29 had quality scores over 65% and were included in our narrative synthesis. We found that chemotherapy was generally associated with a higher side-effect burden than other treatments, and higher burden was associated with higher doses of chemotherapy. Hearing problems, peripheral neuropathy, and Raynaud’s phenomena were particularly common side-effects. Problems with sexual functioning were associated with chemotherapy, radiotherapy and surgery. Discussion: While many studies found that between-treatment differences resolved within the first 12 months since diagnosis, there were many long-term and dose-dependent impacts associated with chemotherapy and radiotherapy across PRO domains. Offering information about these aspects, and information about expected survival outcomes, will help inform, prepare, and empower patients to make decisions about treatment aligned with their preferences and personal situations.