Late effects and healthcare needs of survivors of allogeneic stem cell transplantation: a qualitative study

Abstract

Purpose This qualitative study of survivors of allogeneic stem cell transplantation (SCT) for hematologic malignancy explored attitudes about late effects of therapy, healthcare issues and information needs. Methods We conducted 12 in-depth cognitive interviews and 3 focus groups of patients who had previously had SCT and were without recurrence of their primary disease. We used grounded theory methods, where themes emerged from consensus between co-coders. Health-related quality of life was assessed with the Short-Form (SF-36). Results The study included 22 patients (50% female; 95% white; mean age 47 years). The mean time from SCT was 5.2 years (±1.4 years). Most had low SF-36 scores. Participants discussed late effects of therapy, most commonly graft-versus-host disease, and how they impacted their quality of life. They reported frequent healthcare use and cancer screening after SCT and discussed problems affording care and interacting with insurance companies. Participants shared sources of health information (e.g., preferring providers as their primary sources of information, but also learned from websites, medical journals, and peer experiences) and identified information barriers (e.g., feeling “on their own” insofar as they did not have targeted care for their needs), and expressed importance of anticipatory guidance regarding infertility. Overall, participants’ personal issues and social influences impacted survivors’ needs and attitudes. Conclusions SCT survivors face continuing and lasting health effects. The factors impacting survivorship needs are complex and may be interrelated. Future research should study the affect of incorporating personal and social issues into existing clinical SCT programs on survivors’ quality of life.

“Is this the GVHD?” A qualitative exploration of quality of life issues in individuals with graft-versus-host disease following allogeneic stem cell transplant and their experiences of a specialist multidisciplinary bone marrow transplant service

“…However, the patient experience of these clinics and their subjective impact on patients requires consideration. In previous qualitative work in the U.S., survivors of HSCT have expressed a preference for care from specialists, feeling that other providers did not understand the complexities of their condition [ 13 ]. Furthermore, U.S. focus groups identified concerns whereby patients felt let-down and ‘left on their own’ to deal with their cGVHD care post-HSCT [ 17 , 18 ].…”

“…Management of these patients relies on using validated and sensitive patient-reported outcome instruments (PROMs), focusing on QOL and symptom burden, to better monitor disease progression and treatment response. However, our recent systematic review of PROMs in this patient group revealed that there are limited qualitative data in the bone marrow transplant literature exploring QOL themes [7], with only 11 qualitative articles focussing on GVHD [8][9][10][11][12][13][14][15][16][17][18].…”

Physiological problems in patients undergoing autologous and allogeneic hematopoietic stem cell transplantation

“…Based on our study results, it is clear that nurses may contribute to improving patients’ quality of life by determining the physiological problems in the patients with autologous and allegeneic stem cell transplantation and by showing them constructive ways in which to cope with their health issues. [620212223]…”

A Conceptual Framework and Key Research Questions in Educational Needs of Blood and Marrow Transplantation Patients, Caregivers, and Families

“…A recent study of BMT survivors showed that patients continue to seek information from a variety of sources, including health care providers and publications, with a preference for online information [37]. Internet-based programs provide broad education delivery reaching large numbers of transplantation recipients; however, broad-scale information can also be a paradoxical barrier to education delivery, often failing to target individual needs of BMT recipients [19] and cancer patients [38,39].…”