Identifying And Addressing the Long Term Needs Of the Adult Allogeneic Stem Cell Transplant (SCT) Recipient Through A Survivorship Clinical Program

Stolar, Karen; Neumann, Joyce; Popat, Uday; Alousi, Amin M.

doi:10.1016/j.bbmt.2008.12.443

Cited by 1 publication

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“…Similar to fi ndings in prior studies, our participants noted problems in coordination of care and access to knowledgeable specialists for individual toxicities. 35 They preferred care from SCT specialists and felt that other providers often did not understand the complexities of their condition. Survivors may require more information and guidance about the duration, range and maintenance of late effects.…”

Section: Discussionmentioning

confidence: 99%

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

Hwang

Roundtree

Giralt

et al. 2012

BMJ Support Palliat Care

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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.

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Section: Discussionmentioning

confidence: 99%