Existence of late-effects instruments for cancer survivors: A systematic review

Introduction: The number of cancer survivors is projected to increase to 22.1 million by 2030. Late effects incorporate the full domains of cancer survivorship (e.g., physiologic, psychosocial, economic). They are numerous, complex, and potentially alter the life trajectories of cancer survivors. Currently, research is missing on the impact of late effects (e.g., cardiomyopathy, fertility, lymphedema, anxiety) on cancer survivors. Objective: The goal of this study is to present a systematic review of existing instruments for identifying, diagnosing, and managing late effects within cancer survivors. Methods: Using PRISMA guidelines, a systematic search was conducted using the electronic databases of PubMed and Web of Science to identify relevant papers. Articles considered eligible for this review met the following criteria: 1) written in English, 2) published until September 30, 2019, and 3) containing instruments with questions on late effects. Hypothesis, study design, study sample, questionnaire domains, details of late effects, results, conclusions, and advantages/disadvantages of each article were assessed using a modified version of the NHLBI quality assessment tool. Results: An exhaustive literature review revealed 576 publications in PubMed, 628 in Web of Science, and 260 from additional sources. After removing duplicates, articles without late-effects questionnaires, and publications using identical questionnaires, 11 studies fulfilled the eligibility criteria. Study quality assessment was measured on a scale of 0–6 (0 = poor quality; 6 = highest quality). Only one study was rated with a score of 5 (Rocque). Conclusions: Taken in totality, none of the studies adequately addressed the prevalence, etiology, characteristics, management, and prevention of late effects. There is currently no comprehensive questionnaire that captures all of the relevant details of late effects across the cancer survivorship continuum nor that tracks the interrelatedness of multiple late effects. Hence, it is difficult to identify, diagnose, manage, and ultimately prevent late effects.