Choosing the Right Model of Care Together: Informing an Equitable, Patient-Oriented Decision Aid for In-Person vs Virtual Care of Pediatric Chronic Pain
Date
2024-09-17
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Abstract
Background. Pediatric chronic pain management can occur virtually or in-person, but youth with chronic pain and their families may not be involved in decisions about treatment delivery. Decision aids can supplement shared decision-making, a collaborative decision-making approach between patients and health professionals, and promote patient involvement. To inform the development of a decision aid for in-person versus virtual pediatric chronic pain care, this study sought to understand decision-making practices for in-person versus virtual care (part A) and glean desired decision aid features (part B) from patients’ (youth and caregivers) and health professionals’ experiences. Methods. In part A, an online survey on virtual care and decision-making practices was sent to international pediatric pain clinics. Main findings were descriptively summarized. In part B, patients and health professionals completed an online demographics survey and a semi-structured interview on virtual care decision-making experiences to inform decision aid features. Reflexive thematic analysis described common themes. Results. In part A, 67 clinic responses were included. Virtual care constituted <25% of overall pediatric chronic pain management. Families were reported to play the largest role in decisions. Top factors influencing decision-making included new referrals, patient demographics and location, and patient values and preferences. Most clinics did not evaluate in-person versus virtual care decisions. In part B, 11 patients (5 youth, 6 caregivers) and 15 health professionals participated. Four main themes were generated from health professionals, suggesting that the decision aid should: 1) contextualize the individual patient; 2) promote patient engagement and adherence to care; 3) support clinician characteristics and values; and 4) contextualize the decision-making encounter. Three themes created from patient perspectives guide the decision aid to: 1) communicate patient needs and preferences; 2) facilitate navigation of the healthcare system; and 3) build partnership in a paternalistic system. Discussion. Decision-making for in-person versus virtual pediatric chronic pain management is not always shared. Patients and health professionals have individual preferences for decision-making processes. The future decision aid prototype should consider the unique contexts surrounding health professionals and patients to best support decision-making needs.
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Keywords
pediatric chronic pain, virtual care, shared decision-making, decision aid, reflexive thematic analysis
Citation
Marbil, M. G. A. (2024). Choosing the right model of care together: informing an equitable, patient-oriented decision aid for in-person vs virtual care of pediatric chronic pain (Master's thesis, University of Calgary, Calgary, Canada). Retrieved from https://prism.ucalgary.ca.