Ascertainment of Unmet Needs and Participation in Health Maintenance and Screening of Adult Hematopoietic Cell Transplantation Survivors Followed in a Formal Survivorship Program

Abstract

This study aimed to ascertain unmet needs in autologous and allogeneic hematopoietic cell transplantation (HCT) recipients actively followed in an established long-term survivorship clinic at Roswell Park Cancer Institute from 2006 to 2012. The Survivor Unmet Needs Survey (SUNS) was mailed to 209 eligible patients and returned by 110 (53% participation rate). SUNS includes 89 items covering 5 domains: Emotional Health, Access and Continuity of Care, Relationships, Financial Concerns, and Information. The top 5 specific unmet needs for autologous HCT patients were inability to set future goals/long-term plans, changes in appearance, bad memory/lacking focus, losing confidence in abilities, and paying household or other bills. For allogeneic HCT patients these 5 unmet needs were tied at 21% of respondents: ability to earn money, pay bills, feeling tired, feeling depressed, and dealing with others' expectations of "returning to normal." The top 5 needs reported by females were all from the emotional health domain, whereas males reported financial domain unmet needs. Self-reported participation in health maintenance and screening tests varied greatly from 88% of patients having routine annual bloodwork to 13% of patients having an exercise stress test in the past year. Our findings demonstrate unmet needs in emotional health and financial burden in HCT survivors and variable compliance with survivorship screening.

Keywords: Allogeneic; Autologous; Quality of life; Survivorship; Unmet needs.