CPCHILD Review and Article Summary

Posted on: March 1, 2021 | By: lsolomon2 | Filed under: Caregiver Priorities and Child Health index of Life with Disabilities (CPCHILD), T&M Tools

Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) 

CPCHILD Questionnaire1:
Authors: Unni G. Narayanan
Shannon Weir
Darcy Fehlings

Publisher: The Hospital for Sick Children & Holland Bloorview Kids Rehabilitation Hospital (150 Kilgour Rd. Toronto, Ontario, Canada M4G 1R8)1

Costs (questionnaire PDF): Free for non-commercial use such as education or clinical use; quotes provided on a per-project basis for research2

Purpose:

  • Measure of caregivers’ perspectives on health status, functional limitations, and well-being of children with cerebral palsy (CP) who are more involved (nonambulatory; Gross Motor Function Classification System (GMFCS) IV & V)3.
  • Measures caregiver’s perspective about the child’s health status, comfort, wellbeing, functional abilities and ease of caregiving.
  • Identify areas that are impairing the child’s quality of life (QOL), determine what is most important to the child and caregiver, and monitor the child’s progress in a way that is meaningful to the family2.

Type of Test: Evaluative instrument to measure change over time or following interventions.  Cannot be used as outcome measure until responsiveness/sensitivity to change is established.

Target Population and Ages: Non-ambulatory children with CP (GMFCS IV & V), typically between age 5 and 18, and their caregivers.  Also initially evaluated in children with traumatic brain injury (GMFCS IV & V).  Currently being assessed in children with other severe disabilities that affect a child’s mobility and ability to perform activities of daily living (ie. acquired brain injury, progressive neuromuscular disorders).

Administration 1,4Self-administered parent/caregiver report completed at home or at clinical visit.  Child report also given only if the child is able to understand/communicate response; otherwise, parent/caregiver may complete on behalf of the child.

20-30 minute questionnaire:

  • Section 1-6: 37 items total
    • Activities of daily living/personal care (9 items)
      • Seven-point scale rating activity difficulty
      • Four-point modifier scale rating level of assistance required
    • Positioning, transferring and mobility (8 items)
      • Seven-point scale rating activity difficulty
      • Four-point modifier scale rating level of assistance required
    • Comfort and emotions (9 items)
      • Six-point scale rating frequency of pain or discomfort
      • Four-point modifier scale rating intensity
    • Communication and social interaction (7 items)
      • Seven-point scale rating difficulty
    • Health (3 items)
      • Number of doctor’s visits, overall health, medications
    • Overall quality of life (1 item)
      • Six-point scale rating child’s overall QOL
  • Section 7: Caregivers rate the importance of each of these items and their contribution to their child’s QOL
    • Six-point scale rating importance of each previous measure
  • Section 8: Facts about the child
    • Gender, DOB, School Grade
  • Section 9: Facts about the caregiver
    • Gender, DOB, Work status, Relationship to child, Days per week responsible for care, Education level
    • How long it took to complete the questionnaire

Scoring4
4 stages to scoring:Important scoring notes:

  • The highest possible score for Section 3: Comfort & Emotions items is 7.  It is assumed that if a caregiver rates 5 (none of the time), then there is no associated intensity level and they should select 3 in the modifier intensity column.  For the algorithm, the rating of 3 carries the value of 2.
  • Item 34 (number of doctor/hospital visits) is scored from 0-5:
  • Item 36 (number of medications) is scored in reverse order:
  • Do not average the standardized scores for the domains to get the standardized score for the total survey.  The number of items in each domain is not consistent and are unequally weighted as a result.
  • Missing values are removed from the analysis completely; not treated as zero.  The only exception is the failure to mark the modifier in Section 3: Comfort & Emotions when a score of 5 has been selected.  A total score of 7 for that item can be assumed.
  • Additional items can be added at the end of each section.  These items are not currently incorporated into scoring but may provide helpful information.

Clinical Implications and Normative Data: 

*No MCD/MCID yet determined.

Means and standard deviations that can be expected for children with CP (ambulatory CP is defined as GMFCS Levels I-III; severe non-ambulatory is defined as GMFCS Levels IV and V):
Evidence of Reliability:Evidence of Validity4: CPCHILD is a valid measure of Health Related Quality of Life (HRQL) for children with severe non-ambulatory CP

  • Face Validity: The face validity was measured using section 7 of the questionnaire, which evaluated the caregivers’ perspectives on the other items of the CPCHILD. The importance rating measures the relevance of the rest of the questionnaire. The caregivers rated the importance of each item’s contribution to their child’s QoL on a scale of 0-5, 5 being most important. The mean importance rating for all items was 3.63, with a SD of 0.54, range of 2.54 to 4.74.
  • Construct Validity: 
    • Known-Groups Validity: for children with CP, the Gross Motor Function Classification System (GMFCS) can be used to evaluate known groups validity. The CPCHILD was given to caregivers of children with CP who were categorized according to GMFCS level, and researchers hypothesized that the scores for kids with higher GMFCS scores would have lower CPCHILD scores. They also hypothesized that scores for ambulatory children would be lower than non-ambulatory children. An ANOVA was used to compare the mean scores, and their hypotheses were correct.
    • Convergent Validity: The Child Health Questionnaire (CHQ) was given with the CPCHILD. The parent report version of the CHQ was used, and both the total score and the 6 domain scores of CPCHILD were compared with the physical and psychosocial summary scores of the CHQ were compared using Spearman’s rank correlation coefficient. Results are as follows:
  • Caregivers of the severe CP children completed the CHQ parent report version and the Pediatric Evaluation of Disability Inventory (PEDI). The Spearman’s rank correlation coefficients are as follows:

Discriminative4The sensitivity of the of the CPCHILD was compared to the CHQ and PEDI. They hypothesized that the CPCHILD would be more sensitive than the CHQ and PEDI in detecting differences between patients, as the other measures are more likely to incur floor effects in this population. The CHQ to the CPCHILD and the caregiver assistance scale of the PEDI were compared and reported the “relative efficiency” (the ratio of squares of t-statistics). They found that the CPCHILD was more sensitive than the other measures, except for the PEDI self-care domain.

 

Strengths: The CPCHILD is a strong measure in development to determine HRQL of children with severe CP.  It can be used to help identify individual priorities that are problematic in order to appropriately target therapeutic objectives in alignment with patient and caregiver values.  It measures the caregiver’s perspective and can be completed at home or in the clinic.  When the child is able to respond, both the caregiver and the child’s reports can be measured; having both reports are desirable.

Weaknesses: The CPCHILD is not as well suited for ambulatory CP patients.  As it is now, it is recommended only to be used for children with CP, however it is being studied with other disabilities.  These children are often unable to communicate their perspective on QOL and in such cases, this scale relies on parents/caregivers’ perception of their child’s QOL and the most important indications of HRQL; as a result, this questionnaire is not truly a measure of the child’s HRQL but a proxy influenced by the caregiver’s perceptions.  However, these results are the closest possible approximation and are generally proven to be reliable and valid.

Clinical Applications: The CPCHILD is useful for determining the HRQL of those with CP currently, and can be helpful for physical therapists in establishing goals for lessening caregiver burden and improving quality of life for patients. It will hopefully later be validated with other developmental disabilities.

 

 

ARTICLE SUMMARY5

Sung KH, Kwon S-S, Cho GH, et al. Differences in responses to English and Korean versions of the Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD). Health and Quality of Life Outcomes. 2020;18(1):282. doi:10.1186/s12955-020-01528-4

This purpose of this study was to test a hypothesis that CPCHILD scores would be similar among patients of similar demographics and comorbid profiles from different countries. This study compared scores between matched participants from Korean-speaking and English-language countries. Participants were caregivers of children with CP with hip involvement from either South Korea for Korean-speaking group, or Canada, United States, Australia, New Zealand, and United Kingdom for English-speaking group. The differences in characteristics between the groups was adjusted using propensity score matching in order to reduce selection bias. Based on propensity score matching, two groups of 33 participants from either Korean-speaking or English-speaking countries were created. There were no significant differences between groups for demographics, with the only exception being pelvic obliquity. There were no significant differences between groups for sections 4 and 5 of the CPCHILD between groups. Those from the Korean group reported significantly lower scores in section 1, section 2, section 3, section 6, and total scores. The highest differences were observed in sections 6 and 3, respectively.
There are many reasons for the differences, such as language related factors and nuances lost in translation, social, or cultural factors. Additionally, environmental differences could account for differences, such as community accessibility. Overall, it is important to explore the reasoning for an individual’s scoring in order to assess what can be done to improve the child’s HRQL.

 

 

Resources

2. Sick Kids. CPCHILD™ Questionnaire Toronto, Ontario Canada: Sick Kids; 2016 [cited 2021 25 February]. Available from: http://www.sickkids.ca/Research/CPCHILD-Questionaire/CPChild-Questionaire.html.

3. NINDS CDE. Caregiver priorities and child health index of life with disabilities (CPCHILD) [cited 2021 25 February].

4. Narayanan UG, Weir S, Fehlings D. (2007) The CPCHILD Manual & Interpretation Guide. [cited 2021 February 25].

5. Sung KH, Kwon S-S, Cho GH, et al. Differences in responses to English and Korean versions of the Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD). Health and Quality of Life Outcomes. 2020;18(1):282. doi:10.1186/s12955-020-01528-4

 

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