Tailoring a Survivorship Care Plan: Patient and Provider Preferences for Recipients of Hematopoietic Cell Transplantation. Biol Blood Marrow Transplant 2019 Mar;25(3):562-569
Date
10/14/2018Pubmed ID
30315940Pubmed Central ID
PMC6445667DOI
10.1016/j.bbmt.2018.10.005Scopus ID
2-s2.0-85056318658 (requires institutional sign-in at Scopus site) 14 CitationsAbstract
This study aimed to develop a survivorship care plan (SCP) that can be individualized to facilitate long-term follow-up care of hematopoietic cell transplantation (HCT) survivors. A sample SCP was developed that included 2 documents: a treatment summary and preventive care recommendations that combined data on treatment exposures routinely submitted by HCT centers to the Center for International Blood and Marrow Transplant Research (CIBMTR) with long-term follow-up guidelines. Focus groups were conducted by phone to characterize the critical patient-centered elements of the SCP. Focus group eligibility criteria included (1) adult patients >1 year post-HCT and their caregivers (3 groups; n = 22), (2) HCT physicians and advanced practice providers (APPs) (2 groups; n = 14), (3) HCT nurses and social workers (4 groups; n = 17), and (4) community health care professionals (3 groups; n = 24). Transcripts were analyzed for saturation of key themes using NVivo 10 software. Patients and caregivers suggested combining the treatment summary and care guidelines into a single document. They also requested sections on sexual and emotional health and the immune system. Providers wanted the treatment summary to focus only on what they absolutely must know. Themes were similar across healthcare professionals, although screening for psychosocial issues was emphasized more by the nurses and social workers. All preferred to receive the SCP electronically; however, hardcopy was considered necessary for some patients. All felt that the SCP would facilitate appropriate post-HCT care. This study highlights the need for an SCP instrument to facilitate HCT survivorship care. Furthermore, it demonstrates the feasibility and value of engaging HCT recipients, caregivers, and providers in developing an SCP. Their feedback was incorporated into a final SCP that was subsequently tested in a randomized trial.
Author List
Denzen EM, Preussler JM, Murphy EA, Baker KS, Burns LJ, Foster J, Idossa L, Moore HK, Payton TJ, Haven D, Jahagirdar B, Kamani N, Rizzo JD, Salazar L, Schatz BA, Syrjala KL, Wingard JR, Majhail NSAuthor
J. Douglas Rizzo MD, MS Director, Center Associate Director, Professor in the Medicine department at Medical College of WisconsinMESH terms used to index this publication - Major topics in bold
CaregiversDelivery of Health Care
Female
Health Personnel
Health Planning Guidelines
Hematopoietic Stem Cell Transplantation
Humans
Male
Patients
Survivors
Survivorship