What are cancer survivors' needs and how well are they being met?

Abstract

Purpose: This study sought to identify the needs and unmet needs of the growing number of adult cancer survivors.

Methods: Vermont survivor advocates partnered with academic researchers to create a survivor registry and conduct a cross-sectional survey of cancer-related needs and unmet needs of adult survivors. The mailed survey addressed 53 specific needs in 5 domains based on prior research, contributions from the research partners, and pilot testing. Results were summarized by computing proportions who reported having needs met or unmet.

Results: Survey participants included 1668 of 2005 individuals invited from the survivor registry (83%); 65.7% were ages 60 or older and 61.9% were women. These participants had received their diagnosis 2 to 16 years earlier; 77.5% had been diagnosed ≥5 years previously; 30.2% had at least one unmet need in the emotional, social, and spiritual (E) domain; just 14.4% had at least one unmet need in the economic and legal domain. The most commonly identified individual unmet needs were in the E and the information (I) domains and included “help reducing stress” (14.8% of all respondents) and “information about possible after effects of treatment” (14.4%).

Conclusions: Most needs of these longerterm survivors were met, but substantial proportions of survivors identified unmet needs. Unmet needs such as information about late and long-term adverse effects of treatment could be met within clinical care with a cancer survivor care plan, but some survivors may require referral to services focused on stress and coping.