Tests & Measures: A Resource for Pediatric Physical Therapy Practitioners

Assessment of Caregiver Experience with Neuromuscular Disease (ACEND)

Title: Evaluation of assessment of caregiver experience with neuromuscular disease: reliability and responsiveness of a new caregiver-reported outcome measure in patients with cerebral palsy. Submitted Dec 28, 2019. Accepted for publication Jun 29,2020.

Journal: Translational Pediatrics, Vol 9, No 4 August 2020

Author(s):Nanfang Xu, Hiroko Matsumoto, Joshua Hyman, Benjamin Roye, Heakyung Kim, David P. Roye Jr

Source: AME Publishing Company

Address:  Rm C, 16/F, Kings Wing Plaza 1, No. 3 On Kwan Street, Shatin, NT, Hong Kong

Costs: Could not be found

Equipment needed: pen and paper

Purpose: To assess caregiver impact and quality of life in caregivers of children with a neuromuscular disease.

Type of Test:

Questionnaire – 41 items, with 2 domains.

• Domain 1: Physical Impact

• Domain 2: Caregiver Impact

Target Population and Ages: Designed to assess caregivers of children with disabilities undergoing orthopedic surgery. It is now validated to assess caregivers of children with cerebral palsy. A study of ACEND development and initial validation, distributed the questionnaire to caregivers of children age 4-19 years old.3

Time Requirements: 10-15 minutes per domain²

Scoring: 5 and 6- point ordinal scale. Caregivers with less impact receive higher scores.

Test Administration: Self-reported questionnaire completed by caregiver of a child with a disability. Can be administered pre and post intervention to evaluate the efficacy of specific intervention techniques in reducing burden of care.

Scoring: The questionnaire is scored on a 5 or 6-point ordinal scale for each item within each sub domain.

Type of Information, resulting from testing: The results of the testing are summated to create a total standard score. Highest possible summated score is 269. Higher scores indicate less impact on caregivers.

Environment for Testing: Testing environment should be comfortable for the caregiver and allow him/her to focus continuously for 10-15 minutes.

Equipment and Materials Needed: Pen and paper required to complete the assessment.

Examiner Qualifications: The ACEND outcome measure was designed to be administered by a physical therapist to better understand caregiver burden in patients with neuromuscular disorders. Special training on administering or scoring the outcome measure is not required.

Psychometric Characteristics: Valid and reliable questionnaire.^1,3 Currently no established MCD/MCID.

Standardization/normative data: No standard/normative data available. It has been found that scores can be dependent on the specific patient diagnosis, level of impairments, age, and gender, making it difficult to formulate normative data. Studies have called for the establishment of disease-specific caregiver impact profiles to better understand how to alleviate caregiver burden and create normative data.³

Evidence of Reliability: Xu et al. established reliability based on statistically significant data found in their study on caregivers of children with CP.^1,3

Evidence of Validity: Content and criterion validity have been established in children with neuromuscular disorders in several studies.^1,3

Discriminative: No

Predictive: The predictive capability of the ACEND varies based on the Gross Motor Function Classification System (GMFCS) level and ICD-10 diagnosis. Studies have shown that GMFCS level and diagnosis are the strongest predictors of ACEND scores.¹

Strengths: ACEND is validated in caregivers of children with CP and reliable in caregivers whose child is treated with botulinum toxin for spasticity associated with CP. It can also be used to assess changes in caregiver impact after a child with NMD has undergone an orthopedic intervention³. ACEND includes questions relevant to many aspects of the life of a caregiver of a child with neuromuscular disorders (physical, financial, and psychological).

Weaknesses: Research by Hiroko et al. found floor effects in children with GMFCS V and ceiling effects in children with GMFCS III in motor-based questions on ACEND.³

Clinical Applications: ACEND allows clinicians to get a clearer picture of the patient/family dynamic. Knowing the parents/caregivers baseline quality of life prior to intervention can help guide caregiver involvement, communication and education. Altering these factors can begin to influence caregiver impact in a positive way and improve patient outcomes.

References

1. Xu N, Matsumoto H, Hyman J, Roye B, Kim H, Roye DP Jr. Evaluation of assessment of caregiver experience with neuromuscular disease: reliability and responsiveness of a new caregiver-reported outcome measure in patients with cerebral palsy. Transl Pediatr. 2020;9(4):507-512. doi:10.21037/tp-19-176
2. Best Practices for Physical Therapist & Clinical Evaluators in Spinal Muscular Atrophy (SMA) . Elk Grove Village , IL: cureSMA; 2019.
3. Matsumoto H, Clayton-Krasinski DA, Klinge SA, Gomez JA, Booker WA, Hyman JE, Roye DP Jr, Vitale MG. Development and initial validation of the assessment of caregiver experience with neuromuscular disease. J Pediatr Orthop. 2011 Apr-May;31(3):284-92. doi: 10.1097/BPO.0b013e31820fc522. PMID: 21415688.