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Decision making for hematopoietic stem cell transplantation in pediatric, adolescent, and young adult patients with a hemoglobinopathy—Shared or not?
Author(s) -
Mekelenkamp Hilda,
Smiers Frans,
Camp Nomie,
Stubenrouch Fabienne,
Lankester Arjan,
Vries Martine
Publication year - 2021
Publication title -
pediatric blood and cancer
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.116
H-Index - 105
eISSN - 1545-5017
pISSN - 1545-5009
DOI - 10.1002/pbc.29099
Subject(s) - medicine , hemoglobinopathy , thalassemia , preference , hematopoietic stem cell transplantation , transplantation , pediatrics , disease , economics , microeconomics
Background Hematopoietic stem cell transplantation (HSCT) offers an established curative option for sickle cell disease (SCD) and thalassemia patients but is associated with significant risks. Decision making is a complex process and shared decision making (SDM) could be a fitting approach in case of such preference‐sensitive decisions. This study investigated what level of SDM is used in conversations with hemoglobinopathy patients and/or their caregivers considering HSCT as a curative treatment option. Methods Longitudinal, descriptive study using the Observing‐Patient‐Involvement‐in‐Decision‐Making scale (OPTION 5 ) scale to determine the level of SDM in conversations with 26 hemoglobinopathy patients and/or their caregivers. Results The total mean OPTION 5 score was 43%, which is a moderate SDM approach. There was no difference between conversations with thalassemia patients and SCD patients. Conversations needing an interpreter scored worse than nontranslated conversations. The best scoring OPTION 5 item was item 3: “informing about the various treatment options” (mean score 2.3 on scale 0–4). For OPTION 5 item 4: “eliciting patients’ preferences” a more skilled effort was measured for SCD patients compared to thalassemia patients. Conclusions The mean OPTION 5 score of “moderate” was achieved mainly by giving information on available options, which is primarily a one‐way communication. The SDM process can be improved by actively inviting patients to deliberate about options and including their elicited preferences in decision making.