Community-based respiratory health measures in children and young people with cerebral palsy: A scoping review.

AIM: To identify, map, and describe outcome measurement domains and instruments used within a community setting to assess respiratory health in children and young people aged 1 to 18 years, diagnosed with cerebral palsy (CP). METHOD: A scoping review methodology informed structured searches in nine databases, grey literature, and registries, conducted in August 2021 (updated in February 2023). Articles were screened for eligibility by two independent researchers. Any outcome measurement instruments used to assess respiratory health or associated impact were extracted, categorized, and mapped to health and health-related domains of the International Classification of Functioning, Disability, and Health. RESULTS: Seventy-six outcome measurement instruments were identified across 78 articles worldwide between 1970 and 2023. These were categorized into 'Body functions and structures' (n = 20), 'Activity and performance' (n = 22), and 'Participation and quality of life' (n = 19), with a further 15 mapped to 'Health care resources use'. INTERPRETATION: No consensus of 'what' to measure and 'how' to measure respiratory health in children and young people with CP was found. Moreover, many measures were not replicable in individuals with more severe forms of CP, excluding those at increased risk of respiratory-related morbidity and mortality. Further research is required to agree important outcome domains and associated measures in research and clinical practice. WHAT THIS PAPER ADDS: A limited number and size of experimental designs were found. Seventy-six measures were identified to assess respiratory health in cerebral palsy. No consensus was found in 'what' or 'how' to measure respiratory health. Many measures were not replicable in children and young people at risk of poorer respiratory health outcomes. Children and young people with comorbidities and learning disability were frequently excluded from studies.

Building a community-based culture of evaluation.

In this article we argue for a community-based approach as a means of promoting a culture of evaluation. We do this by linking two bodies of knowledge - the 70-year theoretical tradition of community-based research and the trans-discipline of program evaluation - that are seldom intersected within the evaluation capacity building literature. We use the three hallmarks of a community-based research approach (community-determined; equitable participation; action and change) as a conceptual lens to reflect on a case example of an evaluation capacity building program led by the Ontario Brian Institute. This program involved two community-based groups (Epilepsy Southwestern Ontarioand the South West Alzheimer Society Alliance) who were supported by evaluators from the Centre for Community Based Research to conduct their own internal evaluation. The article provides an overview of a community-based research approach and its link to evaluation. It then describes the featured evaluation capacity building initiative, including reflections by the participating organizations themselves. We end by discussing lessons learned and their implications for future evaluation capacity building. Our main argument is that organizations that strive towards a community-based approach to evaluation are well placed to build and sustain a culture of evaluation.

ASSESSING THE BENEFITS OF HAVING A SPECIALIST PAEDIATRIC PHARMACIST AND PHYSIOTHERAPIST IN THE COMMUNITY TO IMPROVE CHILDHOOD ASTHMA OUTCOMES.

INTRODUCTION: The local Clinical Commissioning Group has funded an innovative one-year pilot project to assess the value of providing specialist paediatric pharmacist and physiotherapist support direct to families and health care professionals (GP's, community pharmacists, practice nurses etc.) regarding asthma in the primary care setting. Currently no such support is provided within community setting by physiotherapy or pharmacy. METHODS: Joint holistic reviews by the clinical specialist physiotherapist and specialist paediatric pharmacist were performed in the patient's home environment or school. The review involved a thorough respiratory review and in-depth medication optimisation review ensuring patients were on appropriate regimes and using devices appropriately. Specifically, if an inhaler was indicated a device that the patient was comfortable using was chosen. Furthermore, parents, patients, teachers and school support workers were counselled on how to self manage asthma exacerbations. In order to review benefits patients answered the five question asthma control test (score out of 25), a standardised quality of life questionnaire (score out of 92) and hospital admissions were monitored. RESULTS: At the six-month stage of the project a total of 42 patients had been reviewed and followed up by the project. During the review period there was a total of 1 hospital admission and 1 attendance to the accident and emergency, this is in comparison to the 8 hospital admissions and 47 accident and emergency attendances with this group of patients in the same period the previous year. All patients had an improvement in outcome measures. The average improvement in asthma control test after intervention was 7 points (30%) and a 30% increase in QoL score. We found that symptomatic children had poor FEF25-75 values (<80%) indicating poor lower airways function possibly due to poor drug deposition. After interventions these scores returned to normal limits (>80%). Compliance to medications regimes was noted to be improved after optimisation. CONCLUSIONS: It can be clearly seen that joint multidisciplinary reviews by physiotherapy and pharmacy can help improve the outcomes of asthma patients. The joint review of inhaler technique in particular was key. Pharmacy services will tend to concentrate on the use of the device itself whereas physiotherapy monitor the strength and depth of breathes taken. It is well known that good drug deposition is key to the success of inhaled medications. By combining pharmacy and physiotherapy both the use of the device and breathing patterns were optimised both contributing to better drug deposition and improved FEF 25-75% reading. Optimisation of medication was also vital. By ensuring the patient was happy with the device they were using and that it had little negative impact on their daily routine compliance with medications was increased. At the six month stage of the pilot this aspect has proven vital to outcomes in asthmatic patients.