The prevalence and correlates of supportive care needs in testicular cancer survivors: a cross‐sectional study

Abstract

Objective: This cross-sectional study aimed to identify the prevalence and correlates of supportive care needs in testicular cancer (TC) survivors. Methods:Men who had completed active anti-cancer treatment for TC between 6 months and 5 years previously showing no evidence of recurrence were recruited from 14 Australian cancer centres (September 2009 -February 2011. Participants completed a self-report questionnaire measuring sociodemographics, disease and treatment information, supportive care needs (CaSUN), psychological distress (DASS21) and health-related quality of life (HRQOL; SF36v2).Results: Of the 486 eligible TC survivors invited to participate, 244 completed the questionnaire. Sixty-six percent reported one or more unmet supportive care needs. The mean number of unmet needs was 4.73 (SD=7.0, Range=0-34). The most common unmet needs related primarily to existential survivorship issues (e.g. life stress) and relationships (e.g. sex life). Younger age and presence of chronic illness other than TC were significantly associated with higher number of unmet needs. Number of unmet needs was more highly correlated with psychological distress and HRQOL than unmet need strength. Conclusions:The majority of TC survivors reported one or more unmet needs. Unmet needs regarding existential survivorship issues were frequently reported by TC survivors despite their favorable prognosis. Relationships unmet needs were less prevalent, but still more common than in breast and gynecological cancer survivors. These findings appear to be related to the young age of TC survivors. As higher number of unmet needs is significantly associated with psychological morbidity and impaired HRQOL, interventions addressing this constellation of issues are needed. KeywordsTesticular cancer, Survivor, Supportive care needs, Psychological distress, Health-related quality of life, Oncology 3 Introduction Testicular cancer (TC) is the most prevalent cancer (excluding skin) in men aged 15-35 years [1] and its incidence is rising, particularly among Caucasians [2]. Advances in diagnosis and treatment, particularly cisplatin-based chemotherapy, have achieved cure rates exceeding 95% [3], resulting in increasing numbers of TC survivors. There is a growing awareness of cancer survivors' supportive care needs [4], commonly defined as "the requirement of some action or resource that is necessary, desirable, or useful to attain optimal well-being" [5; p227]. Needs are considered met if the required action/resource has been provided, or unmet if not. Identification of unmet needs can guide assessment, planning and delivery of services to improve TC survivors' psychological wellbeing and health-related quality of life (HRQOL) [6].

QLU-C10D: a health state classification system for a multi-attribute utility measure based on the EORTC QLQ-C30

“…Eighteen suitable datasets were obtained [27][28][29][30][31][32][33][34][35][36][37][38][39][40][41][42][43][44]. Table 1 summarises their characteristics and the number of observations each contributed to various psychometric analyses.…”

Quality of life among testis cancer survivors

“…In 2013, an Australian study reported that among 244 testis cancer survivors completing a survey, 66% had one or more unmet supportive care needs [15]. The average number was 4.7, and life stress and relationship issues figured prominently.…”

Psychometric properties of the Dutch extended Cancer Survivors’ Unmet Needs measure (CaSUN-NL)

“…Many cancer survivors also report having unmet information and support needs in dealing with these issues (Geller, Vacek, Flynn, Lord, & Cranmer, 2014; Hodgkinson, Butow, Fuchs, et al., 2007; Hodgkinson, Butow, Hunt, et al., 2007; Willems et al., 2016a). The greater the number of unmet information and support needs, the greater the depressive feelings, fear of recurrence and distress, and the lower the quality of life of cancer survivors (Smith et al., 2013). Insight into these unmet needs may help agenda‐setting in health policy addressing cancer survivors unmet needs, tailoring information provision and development of tailored interventions.…”

“…For our two studies (Kanera, Bolman, Mesters, et al., 2016; Willems et al., 2016a), the validated CaSUN was regarded as the most appropriate general questionnaire to specifically investigate the unmet needs of cancer survivors (Bender et al., 2012; Brennan, Butow, Spillane, & Boyle, 2016; Geller et al., 2014; Harrison et al., 2011; Hodgkinson, Butow, Fuchs, et al., 2007; Hodgkinson, Butow, Hunt, et al., 2007; Rowlands, Janda, McKinnon, Webb, & Beesley, 2015; Smith et al., 2013; Urbaniec, Collins, Denson, & Whitford, 2011). Therefore, the CaSUN was translated into Dutch.…”