What instruments should we use to assess paediatric decision-making interventions? A narrative review

Abstract

There is an increasing number of shared decision-making (SDM) interventions in paediatrics. However, there is little consensus as to the best instruments to assess the feasibility and impact of these interventions. This narrative review aims to answer: (1) what feasibility, knowledge and decision-making instruments have been used to assess paediatric SDM interventions and (2) what are the psychometric properties of used decision-making instruments, guided by the ‘consensus-based standards for the selection of health measurement instrument’ criteria. We conducted a review of the peer-reviewed literature. We identified 23 studies that evaluated a paediatric intervention to facilitate SDM for a specific health decision. Eighteen studies assessed intervention feasibility, with a wide variability in assessment between studies. Twelve studies assessed objective knowledge, and four studies assessed subjective knowledge with all but one study aggregating correct responses. We identified nine decision-making instruments that had been assessed psychometrically, although few had been thoroughly evaluated. The Decisional Conflict Scale was the most commonly-used instrument and the only instrument evaluated in paediatrics. Our study revealed a lack of consistency in the instruments used to evaluate decision-making interventions in paediatrics, making it difficult to compare interventions. We provide several recommendations for researchers to improve the assessment of SDM interventions in paediatrics.

A Decision Aid for Nutrition Support is Acceptable in the Pediatric Hospital Setting

“…We assessed decisional regret via the Decisional Regret Scale (scores ranging from 0 [no regret] to 100 [high regret]). The DRS has been validated in a pediatric population and is rated as sufficient on the consensus-based standards for the selection of health measurement instrument (Robertson et al, 2019).We adapted all scales to suit the pediatric setting. As some acutely unwell children may be provided nutrition support as routine care, we added an "N/A" response option for the Satisfaction with Decision Scale and Decisional Regret Scale items.…”

“…More recently, the involvement of the child patient is also being emphasized as critical in providing the best quality pediatric care. Few DAs and/or values clarification exercises have been developed for young people, nor evaluated with young people (Robertson et al, 2019). If cognitively capable, young people should be involved in treatment decisions as much as they desire (Grootens-Wiegers, Hein, van den Broek, & de Vries, 2017).…”

Parents’ understanding of genome and exome sequencing for pediatric health conditions: a systematic review

“…We define “actual understanding” as an individual’s verifiable understanding whereby accuracy and depth of understanding can be determined, and, “perceived understanding” referring to an individual’s degree of belief that they are well informed [ 10 ]. Perceived understanding plays a role in problem-solving and decisional involvement, and consistency between an individual’s perceived and actual understanding are expected to be critical for facilitating the decision-making process and driving individuals’ information seeking behaviors [ 11 , 12 ]. Identification of gaps in parents’ actual and perceived understanding of GS/ES can highlight areas for greater focus in consultations with families and inform development of information resources.…”