Shared decision-making between pediatricians and children (or their parents) with chronic disease in the Maldives: A multi-center exploratory study

Introduction

Shared decision-making (SDM) is a burgeoning concept of care in the Maldives. It seems especially applicable in chronically ill children, for whom many treatment decisions are made over time. A baseline measurement of the SDM level between pediatricians and children or their parents was carried out during consultations across the Maldives, and possible influencing factors were explored.

Methods

A multi-center cross-sectional observational study assessed children with a chronic disease visiting the pediatric outpatient clinic at five medical centers in the Maldives after obtaining informed consent. Two evaluators independently analyzed audio recordings of the consultations to score the level of patient involvement in decision-making using the OPTION-5 instrument. Pediatricians and patients (or their parents) scored their perceived SDM levels using the SDM-Q-Doc and SDM-Q-9 tools, respectively. Scores were expressed as percentages of the maximum score. No pediatrician received previous SDM training. Multivariable linear regression analysis was utilized to identify the influencing factors.

Results

Seventy-eight consultations were audio recorded and analyzed. The mean children’s age was 6.6 years (range: 0–15 years). The median OPTION-5 score was 20 % [interquartile range (IQR) 10–25 %], ranging from 0 % to 55 %. Patients’ and pediatricians’ median SDM-Q scores were 96 % (IQR 80–100 %) and 84 % (IQR 73–93 %), respectively. Regression analysis indicated that the child’s age (p = 0.008), consultation duration (p = 0.004), and medical center (p range: 0.003–0.015) were significant independent factors influencing the SDM level. Language of consultation and disease categories (respiratory, genetic, and other diseases) were significantly (p < 0.001) associated with the physicians’ perception of child/parent involvement in the decision-making process.

Discussion

SDM is not widely utilized among Maldivian pediatricians and children suffering from chronic diseases and their parents. Limited knowledge and unfamiliarity among the patient/parents, hospital staff, and policy makers about the principle, evidence, and benefits of SDM, as well as the lack of SDM skills among pediatricians, are the likely reasons for the relatively low observed SDM scores as measured by the OPTION-5 tool, as opposed to the high perceived SMD levels.

Conclusions

The observed SDM levels in the present baseline study provided opportunities to introduce this method of care in the Maldives in areas where SDM seems an obvious approach when deciding about treatment options. SDM in Maldivian pediatric care can be improved through education about the principles and benefits of SDM, training to improve the pediatricians’ SDM, treatment risk/benefit ratio communication skills, and decision support tools to help chronically ill children and their caregivers participate in the SDM process.

What is known

• −
  SDM can help increase children’s involvement in the decision-making process between pediatricians and parents about their own preferred treatment options as well as their health outcomes.

• −
  Children who suffer from a chronic condition may benefit from SDM as many decisions need to be made during the course of their disease. Hence, they should be increasingly more involved in treatment decision-making while growing up.

What is new

• −
  The level of participation in the decision-making process in children suffering from chronic diseases in the Maldives leaves room for improvement.

• −
  Pediatricians’ perception about their ability to involve chronically ill children and parents/caregivers is higher than the actual level of involvement in the SDM process.