Psychometric properties of cancer survivors’ unmet needs survey

Abstract

This study aims to develop a psychometrically rigorous instrument to measure the unmet needs of adult cancer survivors who are 1 to 5 years post-cancer diagnosis. "Unmet needs" distinguishes between problems which survivors experience and problems which they desire help in managing. The survey was developed from a comprehensive literature review, qualitative analysis of the six most important unmet needs of 71 cancer survivors, review of the domains and items by survivors and experts, cognitive interviews and a pilot test of 100 survivors. A stratified random sample of 550 cancer survivors, selected from a population-based Cancer Registry, completed a mailed survey to establish reliability and validity. The final 89-item Survivors Unmet Needs Survey (SUNS) has high acceptability, item test-retest reliability and internal consistency (Chronbach's alpha 0.990), face, content and construct validity. Five subscales measure Emotional Health needs (33 items, 19.4% of variance), Access and Continuity of Care (22 items, 15.1%), Relationships (15 items, 12.1%), Financial Concerns (11 items, 10.3%) and Information needs (eight items, 8.1% of the variance). This instrument has strong psychometric properties and is useful for determining the prevalence and predictors of cancer survivors' unmet needs across types of cancer, length of survivorship and socio-demographic characteristics. Use of the SUNS will enable more effective targeting of programmes and services and guide policy and health planning decisions. This study is an important step toward evidence-based planning and management of problems which the growing survivor population requires assistance in managing.