Tests & Measures: A Resource for Pediatric Physical Therapy Practitioners

Assessment of Caregiver Experience with Neuromuscular Disease (ACEND) Article Summary

Title: Development and Initial Validation of the Assessment of Caregiver Experience with Neuromuscular Disease 1

 

Reference: Matsumoto H, Clayton-Krasinski DA, Klinge SA, et al. Development and Initial Validation of the Assessment of Caregiver Experience With Neuromuscular Disease. J Pediatr Orthop. 2011;31(3):284-292. doi:10.1097/BPO.0b013e31820fc522

 

Purpose: The purpose of this study was to present the development of the ACEND and the initial validation of this outcome measure’s ability to assess the effects of neuromuscular diseases and orthopedic interventions on caregivers.

 

Study Population: The participants in the development of the ACEND included 60 patients with varying neuromuscular disease (NMD) and their parents. Some of the diagnoses included in this study were CP, spinal muscular atrophy, Duchene muscular dystrophy, dystonia, and others. In the second part of the study, initial validation of the ACEND, a different 46 patients with varying NMD and their respective caregivers were enrolled. Patients with non-English speaking caregivers were excluded from either study because some questionnaires used in the studies were only validated in English.

 

Methods: During the first part of the study, children with multiple NMDs were classified using the Gross Motor Function Classification System (GMFCS), which is based on ambulatory status and equipment needed for mobility. The GMFCS levels were determined by agreement between the treating orthopedic surgeon and the physical therapist. A range of previously validated pediatric health measures was administered to the caregivers. A structured system was applied to determine the most appropriate and applicable questions from the large sample. Various criteria guided the creation of an ultimate question list that measured caregiver impact. In the second part of the study, the focus was on the initial validation of caregiver experience in moderate-to-severe NMDs. Following the administration of the ACEND, caregivers were asked to rate the relevance and clarity of each question and whether or not the questions represented pertinent information to convey to physicians. Various statistical analyses were completed to decide the validity of the ACEND measure.

 

Outcome measures: The study used the Pediatric Evaluation of Disability Inventory and Pediatric Outcomes Data Collection Instrument to develop the ACEND instrument. The second portion of the study used the ACEND to assess the caregiver impact experienced by caregivers/parents raising children with various NMDs, further explained in the results section.

 

Intervention: There was no intervention provided in this study; the focus was on the development of the ACEND.

 

Results:  In the development of the ACEND, 41 items were developed under two domains with seven subdomains. Domain 1 examines the physical impact and has four subdomains: feeding/grooming/dressing, sitting/play, transfers, and mobility. Domain 2 discusses the general caregiver impact, including three subdomains: time, emotion, and finance. Scoring is based on 6-point, and 5-point ordinal scales, caregivers experiencing less intensive caregiving impact would receive higher scores. The final scores are meant to convey the amount of “impact health” on the individual. The results of the second part of the study were a mean overall relevance rating was 6.21 ± 0.37 and a clarity rating of 6.68 ± 0.52. No floor or ceiling effects were noted in Domain 2 across GMFCS levels. However, multiple floor effects in GMFCS V patients and ceiling effects in GMFCS III patients in the motor-based items were identified.

 

Strengths of the Article: The study demonstrated a straightforward detailed explanation of the structural approach used when designing the questionnaire. The article did an excellent job of showing the various statistical analyses performed to determine the instrument’s validity. The ACEND assessment was a valid test, indicating that most study participants found the items significant to a physician’s evaluation of potential caregiver impact.

 

Limitations of the Article: Some limitations of this study were that it was a small sample size and relatively broad sample of NMD, it was not able to outline pathology-specific caregiver impact reports, and it was unable to determine the effect that social, economic, and familial support could affect caregiver impact. Another limitation of the study was the use of GMFCS to define construct validity; other studies have shown that GMFCS use in non-CP patients has yet to be validated.

 

Overall Conclusion: This study intended to create a measure based on caregiver impact that effectively assesses the efficacy of procedures in the more severe NMD population. The authors presented a 41-item self-report assessment relevant to caregivers, demonstrates a good correlation with the GMFCS, and could potentially respond to clinical interventions. The second portion of this study shows that the ACEND is a valid, disease-specific tool that can quantify the caregiver experience of children with NMD.