Content comparison of unmet needs self-report measures for lymphoma cancer survivors: A systematic review

Abstract

Purpose The increasing recognition of the complex impacts of a cancer diagnosis and its treatment has led to efforts to develop instruments to reflect survivors’ needs accurately. However, evidence regarding the content and quality of instruments used to evaluate the unmet needs of lymphoma survivors is lacking. This review aimed to evaluate the psychometric properties and comprehensiveness of available self-report instruments to assess unmet needs and quality of life with adult lymphoma survivors. Methods A systematic search of five databases (CINAHL, EMBASE, Medline, PsycInfo and Scopus) was conducted to identify instruments measuring unmet needs or quality of life outcomes. Original articles reporting the instrument’s validation or development via citation screening were retrieved and screened against eligibility criteria. An appraisal of the instrument’s measurement properties was conducted, guided by the COSMIN methodology and reported in accordance with PRISMA guidelines. A content comparison using the Supportive Care in Cancer Framework was performed. Results Twelve instruments met the inclusion criteria; only one was explicitly developed for lymphoma (Functional Assessment of Cancer Therapy–Lymphoma). Four instruments focused on the construct of need, and eight focused on quality of life. The psychometric data in the published literature is not comprehensive; there is heterogeneity in their development, content and quality. No included instrument was examined for all COSMIN measurement properties, and methodological quality was variable; all instruments measured at least four domains of need. The emotional domain was reviewed by all instruments (n = 12), and the spiritual and informational domains received the least focus (n = 4 each). Conclusion This review provides a platform for instrument comparison, with suggestions for important factors to consider in systematically selecting unmet needs and quality of life self-report measures for adult lymphoma survivors. Considering the various discrepancies and limitations of the available instruments, using more than one instrument is recommended. In selecting measurement instruments, researchers should consider research objectives, study design, psychometric properties and the pros and cons of using more than one measure. Evaluating the participant burden and feasibility of completing the selected instrument is important for lymphoma survivors, a group burdened by cancer-related fatigue and cognitive impairment.