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Pain Experiences of Adults With Sickle Cell Disease and Hematopoietic Stem Cell Transplantation: A Qualitative Study.
Abu Al Hamayel, Nebras; Waldfogel, Julie M; Hannum, Susan M; Brodsky, Robert A; Bolaños-Meade, Javier; Gamper, Christopher J; Jones, Richard J; Dy, Sydney M.
Afiliación
  • Abu Al Hamayel N; Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA.
  • Waldfogel JM; Department of Medical Education, Faculty of Medicine, King Abdulaziz University, Jeddah, Kingdom of Saudi Arabia.
  • Hannum SM; Department of Pharmacy, The Johns Hopkins Hospital, Baltimore, Maryland, USA.
  • Brodsky RA; Department of Health, Behavior and Society, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA.
  • Bolaños-Meade J; Hematologic Malignancies and Bone Marrow Transplantation Program, Department of Oncology, Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins and Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.
  • Gamper CJ; Division of Hematology, Department of Medicine, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.
  • Jones RJ; Hematologic Malignancies and Bone Marrow Transplantation Program, Department of Oncology, Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins and Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.
  • Dy SM; Division of Pediatric Oncology, Department of Oncology, Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins and Johns Hopkins University School of Medicine.
Pain Med ; 22(8): 1753-1759, 2021 08 06.
Article en En | MEDLINE | ID: mdl-33674866
OBJECTIVE: Despite increasing use of hematopoietic stem cell transplantation (HSCT) for adults with sickle cell disease (SCD), little is known about pain management experiences throughout this process. The objective of this study was to explore patients' experiences with pain and pain management during and after HSCT for SCD. METHODS: We conducted a qualitative interview study with 10 patients who underwent HSCT for SCD. We transcribed interviews verbatim and inductively identified codes. We used thematic analysis alongside a constant comparative method to develop and refine a codebook that aided in the identification of themes. RESULTS: Four key themes emerged. (1) The pain trajectory: patients described a fluctuating course of pain during HSCT, which often extended long afterwards and impacted all aspects of life, particularly affected by pre-HSCT experiences; (2) The role of opioids-a double-edged sword: patients described opioids as reducing pain but insufficiently to balance significant adverse effects and burden; (3) Patient-centered decision making in pain management: patients described insufficient agency in decisions about opioid use and weaning; and (4) Consequences of health-related stigma: patients described experiences with stigma, mainly related to opioid use and weaning, as similar to pre-HSCT. CONCLUSIONS: From the perspective of patients who have undergone HSCT for SCD, clinicians should use a patient-centered approach, integrating non-opioid approaches into pain management, particularly psychosocial support. As transplant for SCD becomes increasingly available, incorporating patient perspectives may improve health care delivery and overall patient experiences.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Trasplante de Células Madre Hematopoyéticas / Anemia de Células Falciformes Tipo de estudio: Etiology_studies / Prognostic_studies / Qualitative_research Límite: Adult / Humans Idioma: En Revista: Pain Med Asunto de la revista: NEUROLOGIA / PSICOFISIOLOGIA Año: 2021 Tipo del documento: Article País de afiliación: Estados Unidos Pais de publicación: Reino Unido
Texto completo
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Trasplante de Células Madre Hematopoyéticas / Anemia de Células Falciformes Tipo de estudio: Etiology_studies / Prognostic_studies / Qualitative_research Límite: Adult / Humans Idioma: En Revista: Pain Med Asunto de la revista: NEUROLOGIA / PSICOFISIOLOGIA Año: 2021 Tipo del documento: Article País de afiliación: Estados Unidos Pais de publicación: Reino Unido