Hoping for a normal life: Decision-making on hematopoietic stem cell transplantation by patients with a hemoglobinopathy and their caregivers.

Hilda MekelenkampMartine de VriesIneke SaalminkErfan NurJean-Louis KerkhoffsHarriët HeijboerMarjon CnossenArjan LankesterFrans Smiersnull null

Published in: Pediatric blood & cancer (2023)

The hope for a normal life guided the decision-making process, described as a constant balance between the impact of the disease and HSCT. A structured approach to explore patients' and caregivers' perspectives on HSCT decision-making is needed, where specifically discussing the impact of the disease and hope for a normal life need to be integrated in the process.

Keyphrases

decision making
palliative care
end stage renal disease
ejection fraction
newly diagnosed
acute myeloid leukemia
prognostic factors
peritoneal dialysis
hematopoietic stem cell
patient reported outcomes