Patient perspectives in pediatric neurology: a critical shift in the paradigm of outcome measurement

Ronen, Gabriel M.; Rosenbaum, Peter; Streiner, David L.

doi:10.1111/dmcn.14954

Cited by 6 publications

(3 citation statements)

References 58 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…8 Electronic patient-reported outcomes (e-PROs) can serve as an informatics tool for including the child and family perspective regarding their needs and priorities when designing and evaluating services. 9 10 In EI, e-PROs can be used in direct service provision to consider family needs and priorities for tailoring the development of the individualized family service plan (IFSP) that should include functional goals and strategies for goal attainment based on family-identified priorities and inclusive of their expertise. Some e-PROs can also be useful for tracking progress to guide shared and data-driven decisions about tailoring interventions with families.…”

Section: Background and Significancementioning

confidence: 99%

Implementing an Electronic Patient-Reported Outcome and Decision Support Tool in Early Intervention

et al. 2023

View full text Add to dashboard Cite

Objective The aim of the study is to identify and prioritize early intervention (EI) stakeholders' perspectives of supports and barriers to implementing the Young Children's Participation and Environment Measure (YC-PEM), an electronic patient-reported outcome (e-PRO) tool, for scaling its implementation across multiple local and state EI programs. Methods An explanatory sequential (quan > QUAL) mixed-methods study was conducted with EI families (n = 6), service coordinators (n = 9), and program leadership (n = 7). Semi-structured interviews and focus groups were used to share select quantitative pragmatic trial results (e.g., percentages for perceived helpfulness of implementation strategies) and elicit stakeholder perspectives to contextualize these results. Three study staff deductively coded transcripts to constructs in the Consolidated Framework for Implementation Research (CFIR). Data within CFIR constructs were inductively analyzed to generate themes that were rated by national early childhood advisors for their relevance to longer term implementation. Results All three stakeholder groups (i.e., families, service coordinators, program leadership) identified thematic supports and barriers across multiple constructs within each of four CFIR domains: (1) Six themes for “intervention characteristics,” (2) Six themes for “process,” (3) three themes for “inner setting,” and (4) four themes for “outer setting.” For example, all stakeholder groups described the value of the YC-PEM e-PRO in forging connections and eliciting meaningful information about family priorities for efficient service plan development (“intervention characteristics”). Stakeholders prioritized reaching families with diverse linguistic preferences and user navigation needs, further tailoring its interface with automated data capture and exchange processes (“process”); and fostering a positive implementation climate (“inner setting”). Service coordinators and program leadership further articulated the value of YC-PEM e-PRO results for improving EI access (“outer setting”). Conclusion Results demonstrate the YC-PEM e-PRO is an evidence-based intervention that is viable for implementation. Optimizations to its interface are needed before undertaking hybrid type-2 and 3 multisite trials to test these implementation strategies across state and local EI programs with electronic data capture capabilities and diverse levels of organizational readiness and resources for implementation.

show abstract

Section: Background and Significancementioning

confidence: 99%

Implementing an Electronic Patient-Reported Outcome and Decision Support Tool in Early Intervention

et al. 2023

View full text Add to dashboard Cite

show abstract

“…Children with brain-related disorders often face challenges in dealing with their disabilities and health complications because of the chronicity of their conditions and their perspectives on their quality of life. 2,14 Their limitations in daily functioning involve their mental and sensory functions, mobility, communication, self-care, and their community and social life. They share similar problems despite different underlying conditions.…”

Section: There Is a Letter To The Editor On This Original Article By ...mentioning

confidence: 99%

Meaningful outcomes for children and their caregivers attending a paediatric brain centre

Heydenrijk-Kikkert

Schmidt

Pangalila

et al. 2023

Develop Med Child Neuro

View full text Add to dashboard Cite

AimTo identify meaningful outcomes of children and their caregivers attending a paediatric brain centre.MethodWe compiled a long list of outcomes of health and functioning of children with brain‐related disorders such as cerebral palsy, spina bifida, (genetic) neurodevelopmental disorders, and acquired brain injury. We incorporated three perspectives: patients, health care professionals, and published outcome sets. An aggregated list was categorized using the International Classification of Functioning, Disability, and Health: Children and Youth version in a patient validation survey for children and parent‐caregivers to prioritize outcomes. Outcomes were considered meaningful when ranked ‘very important’ by 70% or more of the participants.ResultsWe identified 104 outcomes from the three perspectives. After categorizing, 59 outcomes were included in the survey. Thirty‐three surveys were completed by children (n = 4), caregivers (n = 24), and parent‐caregivers together with their child (n = 5). Respondents prioritized 27 meaningful outcomes covering various aspects of health and functioning: emotional well‐being, quality of life, mental and sensory functions, pain, physical health, and activities (communication, mobility, self‐care, interpersonal relationships). Parent‐caregiver concerns and environmental factors were newly identified outcomes.InterpretationChildren and parent‐caregivers identified meaningful outcomes covering various aspects of health and functioning, including caregiver concerns and environmental factors. We propose including those in future outcome sets for children with neurodisability.

show abstract

“…Clinical trials of antiseizure medication often aim for a reduction in seizure frequency of over 50%; for those with epilepsy, the resulting impact on their quality of life may be less than anticipated because they still have seizures. Ronen et al 1 discuss the importance of capturing outcomes important to patients, for example through using patient-reported outcome measures (PROMS). Such a step is welcome: but does the use of PROMS benefit patients in everyday clinical settings?…”

mentioning

confidence: 99%

How can we capture the outcomes that really matter to patients?

Basu

2021

Develop Med Child Neuro

View full text Add to dashboard Cite

show abstract

Patient perspectives in pediatric neurology: a critical shift in the paradigm of outcome measurement

Cited by 6 publications

References 58 publications

Implementing an Electronic Patient-Reported Outcome and Decision Support Tool in Early Intervention

Implementing an Electronic Patient-Reported Outcome and Decision Support Tool in Early Intervention

Meaningful outcomes for children and their caregivers attending a paediatric brain centre

How can we capture the outcomes that really matter to patients?

Contact Info

Product

Resources

About