Quality of life of 125 adults surviving 6–18 years after bone marrow transplantation

Background: Recent studies examining the medical and psychosocial sequelae of bone marrow transplantation have reported most survivors do relatively well while a smaller group continues to experience less than optimal quality of life (QOL). Many of these studies are limited by small sample sizes, limited scope, and focus on a narrow (1–4 year) window of survival. Methods: The descriptive survey examined the QOL, late medical complications, psychological distress, demands of long-term recovery, and health perceptions of 125 adults surviving 6–18 (mean 10) years after marrow transplantation. Seven wide-ranging tests covering 271 items were completed on average in 90 min. Two tests were developed by the authors specifically for assessing QOL in this population. Results: 74% of long-term survivors of bone marrow transplanation reported their current QOL was the same or better than before transplantation, 80% rated their current health status and QOL as good to excellent, and 88% said the benefits of transplantation outweighed the side effects. Ten years or more post-transplantation, long-term survivors continued to experience a moderate incidence of lingering complications and demands, including emotional and sexual dysfunction, fatigue, eye problems, sleep disturbance, general pain and cognitive dysfunction. However, the severity or degree of distress attributed to those complications was, for most survivors, consistently low. Nearly all were back to work or school. Only 5% rated both their QOL and health status as poor. Long-term survivors demonstrated good mood and low psychological distress compared to cancer and population norms, and had the same perceptions as the general population of their current health and expectation of future health. Demands attributed to long-term survival appeared to impose little hardship. The most frequently cited demand of recovery was the perceived lack of social support as time went on. Conclusions: Almost all long-term survivors were leading full and meaningful lives. Persistent complications were, on the whole, dismissed as relatively trivial and the overwhelming majority viewed themselves as cured and well.