The cancer support person's unmet needs survey: psychometric properties

Background: A rigorous psychometric methodology was used to develop a measure of unmet needs for cancer survivors' principal support persons. Principal support person was defined as "someone you can count on and who helps you with your needs." Methods: Development of the domains and the items followed an extensive literature review, iterative input from support persons, and consultation with health professionals and front-line staff working with cancer survivors and their supports. Cognitive interviews helped clarify item wording, and the draft questionnaire was reappraised by a group of support persons. The questionnaire was reduced to 90 items and sent to a stratified, random sample of cancer survivors selected from a provincial population-based cancer registry. They were asked to give the survey to their support person. Results: The resulting 78-item Support Person Unmet Needs Survey has high acceptability, item test-retest reliability, internal consistency (Chronbach alpha = .990), and face, content, and construct validity. It captures 6 domains of unmet needs and accounts for 73.5% of total variance: Information and Relationship Needs (27 items, 22.1% of variance), Emotional Needs (16 items, 15.2%), Personal Needs (14 items, 14.0%), Work and Finance (8 items, 8.8%), Health Care Access and Continuity (9 items, 8.6%), and Worries About Future (4 items, 4.8%). Conclusions: This instrument will be of use where there is an interest in examining the impact of cancer not only on cancer survivors but also on their identified principal support persons