Quantitative Assessment of Parent and Patient Preferences
Menée aux Etats-Unis par enquête auprès de 61 parents d'un enfant décédé d'un cancer (âge médian : 48 ans), cette étude analyse leurs préférences concernant la nature et les objectifs des soins de fin de vie de leur enfant
Studying patient preferences is important for determining how health interventions and systems can be accountable and responsive to patients. To date, much patient preference research has been at the individual level, such as to evaluate trade-offs between drug benefits and harms, and at the aggregate level, such as to evaluate the optimal allocation of health resources. The study by Ananth and colleagues is a welcome extension of preference research into the field of quality improvement. Using a cross-sectional discrete-choice experiment (DCE), Ananth et al studied how 61 parents of children who had died of cancer valued 28 quality of care measures, what decision scientist would call attributes, assigning a score (with a total range of 0, indicating least important, to 100, indicating most important) to each measure. Ananth et al found that the most important measures were having a child’s symptoms treated well (mean score, 9.25 [95% credible interval [CrI], 9.06-9.45]), feeling that a child’s needs are heard by the health care team (mean score, 8.39 [95% CrI, 8.05-8.73]), and having a goal-concordant end-of-life experience (mean score, 7.45 [95% CrI, 6.84-8.05]). The least important measures included avoiding chemotherapy (mean score, 0.33 [95% CrI, 0.21-0.45]), providing psychosocial support for parents (mean score, 1.01 [95% CrI, 0.57-1.45]), and avoiding the intensive care unit (mean score, 1.09 [95% CrI, 0.74-1.43]). Although sometimes referred to as importance scores, it is more accurate to say that these scores estimate the impact of these attributes on individuals’ responses, not a comprehensive assessment what participants consider to be important.
JAMA Network Open , commentaire, 2022