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

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.