Improving shared decision‑making between paediatric haematologists, children with sickle cell disease, and their parents: an observational post-intervention study

Abstract

Children with sickle cell disease (SCD) suffer from a chronic disease that can lead to serious co-morbidity and impacts their quality of life. During the course of their disease, a variety of health-related decisions need to be made for and by SCD-patients, depending on their age and health status, together with their parents and paediatric haematology clinicians. Shared decision-making (SDM) may improve health outcomes of chronically ill children but is still not commonly applied. We assessed the level of SDM among paediatric haematologists after the introduction of SDM interventions. An observational post-intervention study was conducted in a paediatric outpatient clinic of a university hospital. After an SDM consultation training of the three paediatric haematologists and introduction of SDM-supporting tools for both paediatricians and (parents of) patients with SCD, two evaluators independently and objectively analysed the level of patient involvement in decision-making from audio-recordings of the consultations using the OPTION-5 instrument. SDM-Q-9 and SDM-Q-Doc questionnaires were used to measure the level of SDM as perceived by patients/parents and paediatricians, respectively. Scores were expressed as a percentage, ranging from 0% (no SDM observed) to 100% (exemplary level of SDM). Participants were 9 female and 9 male patients between 4 months and 17 years old, with a median age of 7.5 years (Interquartile Range [IQR] 2.5-12). Eighteen consultations (six per paediatrician) in which a decision was to be made about SCD treatment options were analysed. Median OPTION-5 score was 50 (IQR 40-65%). Median SDM-Q-9 and SDM-Q-Doc scores were 73% (IQR 52.2-91) and 62.2% (IQR 55.6-71.1), respectively.

Conclusion: After the introduction of SDM training and tools, paediatric haematologists reached a moderately good level of SDM. This level had doubled as compared to the baseline level, as assessed in a previous study.

What is known: • Children who suffer from sickle cell disease (SCD) are vulnerable to health inequities and suboptimal health outcomes. Hence, SDM seems an appropriate method of care for these children. • SDM tools and training may help paediatricians and children participate in a collaborative decision-making process about the children's preferred treatment options and improve their health outcomes.

What is new: • After SDM training and decision support aids for paediatricians and patients, the level of involvement in the decision-making process by (the parents of) patients suffering from SCD reached a moderately good level. • A difference persists between paediatricians' perceived level of involving the child and parents in a shared decision-making process and the observed level of involvement.

Keywords: Chronic disease; OPTION-instrument; Paediatrics; SDM-Q-9 questionnaire; SDM-Q-Doc questionnaire; Shared decision-making; Sickle cell disease; Triadic.

Fig. 1

3 Goede Vragen voor Kinderen (3 Good Questions for Children), which can be translated as (1) This is what I feel, what is it?, (2) What can we do about it?, (3) How will this affect me now and later? Copyright: Patiëntenfederatie Nederland. St. Kind & Ziekenhuis, Nederlandse Vereniging voor Kindergeneeskunde

Fig. 2

Flowchart of consultation inclusion

Fig. 3

Option-5 item scores: awareness that a decision needs to be made (item 1), assurance that the patient will be well-informed to decide together (item 2), explanation of treatment options including risks and benefits (item 3), elicitation of patients’ preferences (item 4) and deciding together about the most appropriate treatment option (item 5)

Fig. 4

Option-5 boxplot individual scores: 2023 baseline-measurement scores [13] (blue) compared to 2024 post-intervention scores (red)

Fig. 5

a and b SDM-Q-9 and SDM-Q-Doc total scores per item, respectively. 1, Clarifying that a decision needs to be made. 2, Eliciting patients involvement preferences. 3, Clarifying multiple ways to deal with the health-related problem. 4, Explaining the pros and cons of each (non)treatment option. 5, Patients’ level of understanding of the provided information. 6, Identifying patients preferred (non)treatment option. 7, Weighing of the discussed (non)treatment options. 8, Choosing a treatment option together. 9, Shared agreement on follow-up arrangements

Fig. 6

Bland–Altman plot of the differences between SDM-Q-9 and SDM-D-doc against the mean values. The black horizontal line indicates the mean difference between the Q-9 and the Q-Doc scores. The red lines indicate the 95% limits of agreement between Q-9 and the Q-Doc scores