Tailoring a Survivorship Care Plan: Patient and Provider Preferences for Recipients of Hematopoietic Cell Transplantation
| Autor: | John R. Wingard, Navneet S. Majhail, Elizabeth Murphy, Balkrishna N. Jahagirdar, Lizette Salazar, Jackie Foster, Ellen M. Denzen, Darlene Haven, Tammy J. Payton, Jaime M. Preussler, Lensa Idossa, Barry A. Schatz, Heather Moore, Karen L. Syrjala, J. Douglas Rizzo, K. Scott Baker, Naynesh Kamani, Linda J. Burns |
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| Rok vydání: | 2018 |
| Předmět: |
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medicine.medical_specialty Health Planning Guidelines Patients Health Personnel Survivorship Article law.invention 03 medical and health sciences 0302 clinical medicine Randomized controlled trial law Care plan Survivorship curve medicine Humans Survivors Transplantation Hematopoietic cell Social work business.industry Hematopoietic Stem Cell Transplantation Hematology Focus group Caregivers 030220 oncology & carcinogenesis Family medicine Female business Psychosocial Delivery of Health Care 030215 immunology |
| Zdroj: | Biology of blood and marrow transplantation : journal of the American Society for Blood and Marrow Transplantation. 25(3) |
| ISSN: | 1523-6536 |
| Popis: | PURPOSE: This study aimed to develop a survivorship care plan (SCP) that could be individualized to facilitate long-term follow-up care of hematopoietic cell transplantation (HCT) survivors. METHODS: A sample SCP was developed that included two 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/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. RESULTS: Patients/caregivers suggested combining the treatment summary and care guidelines into one document. They also requested sections on sexual and emotion 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, though screening for psychosocial issues was emphasized more by the nurses/social workers. All preferred to receive the SCP electronically; however, hardcopy was considered necessary for some patients. All felt the SCP would facilitate appropriate post-HCT care. CONCLUSION: This study highlighted the need for an SCP instrument to facilitate HCT survivorship care. Furthermore, it demonstrated the feasibility and value of engaging HCT patients, caregivers and providers in developing a survivorship care tool. Their feedback was incorporated into a final SCP subsequently tested in a randomized trial. |
| Databáze: | OpenAIRE |
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