Understanding of factors associated with variability in recovery following allogeneic transplant can increase the likelihood that patients will ultimately return to a normal, productive life. Existing research regarding the recovery of adult survivors of allogeneic HSCT indicates that many patients experience difficulties in a variety of Health Related Quality of Life (HRQL) domains. A critical issue which has remained unexamined concerns the extent to which domains improve, remain static, or perhaps even deteriorates with the passage of time after allogeneic HSCT. ? ? This prospective longitudinal study accrues research participants once they have survived a minimum of three years from date of transplant. The protocol will provide a mechanism to examine the health status and health outcomes of long term survivors ( 3 years following allogeneic HSCT). Patients are approached for participation during their annual transplant follow-up at the Clinical Center.? Patients will be evaluated at approximately yearly intervals beyond the first time point within 60 days of their annual transplant follow-up. This parallel with their medical care will allow for potential work in the future comparing biological and self-reported markers of recovery e.g. self-reported fatigue and thyroid function. ? ? We are currently entering our 3rd year of the study. To date, 127 research participants have been screen, 97 agreed to enroll. Fifty-three subjects have completed their 2nd year survey. Questionnaires address topics such as HRQL, functional status, psychosocial adjustment, symptom distress, fatigue, spirituality and sleep quality.? ? Results will be discussed with respect to their implications for both the encouragement of realistic expectations for recovery following allogeneic HSCT as well as the development of intervention.
| Bevans, M F; Marden, S; Leidy, N K et al. (2006) Health-related quality of life in patients receiving reduced-intensity conditioning allogeneic hematopoietic stem cell transplantation. Bone Marrow Transplant 38:101-9 |
