Are cancer helplines effective in supporting caregivers? A systematic review

PURPOSE: The aims of this systematic review were to summarize the profile of caregivers accessing cancer helplines, to evaluate caregiver satisfaction with the helpline service, and to review the evidence base of intervention studies testing the efficacy of community-based cancer helplines in improving caregiver health and well-being. METHODS: Four electronic databases (Medline, CINAHL, PsychINFO, and EMBASE) were systematically searched to identify relevant literature, including all articles published in English until May 2018. Reference lists of accepted papers were reviewed for the inclusion of additional potentially relevant articles, gray literature was excluded. RESULTS: Forty-five publications met the inclusion criteria for this review. Forty-one papers reported on the proportion of caregivers accessing cancer helplines. Twenty-six studies described demographic and clinical characteristics of caregivers and eight reported on call characteristics. Reasons for contacting the service were stated in 21 studies and caregiver satisfaction with the helpline service was assessed in 12 articles. Fourteen studies investigated specific topics of interest (e.g., prevalence of sleep problems, distress screening, or clinical trial participation). Two randomized controlled trials examined the efficacy of cancer helplines in improving caregiver outcomes, with findings showing interventions to be effective in reducing distress and unmet needs, and in increasing positive adjustment. CONCLUSIONS: There is limited scientific evidence regarding the efficacy of cancer helplines to improve caregivers’ health and well-being. More intervention studies are needed to examine the benefits of cancer helplines to this study population to ensure structured referral pathways can be established. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1007/s00520-019-04807-z) contains supplementary material, which is available to authorized users.