Edorium Journal of

Disability and Rehabilitation

 
     
Original Article
 
Validation of the Brazilian Portuguese version of caregiver priorities and child health index of life with disabilities
Luiz Antonio Pellegrino1, Erika Veruska Paiva Ortolan2, Pedro Luiz Toledo de Arruda Lourenção3, José Eduardo Corrente4, Ariane Aparecida Viana5, Cleber Ricardo Cavalheiro5, Felipe Gomes6, Unni G. Narayanan7
1MSc, MD, Bauru State Hospital, Bauru, SP, Brazil
2PhD, MD, Head of the Department of Surgery and Orthopedics, Botucatu Medical School, Botucatu, SP, Brazil
3PhD, MD, Professor, Surgery and Orthopedics Department, Botucatu Medical School, Botucatu, SP, Brazil
4PhD, Professor, Bioscience Institute, Botucatu, SP, Brazil
5MSc, Physical therapist, Bauru State Hospital, Bauru, SP, Brazil
6Undergraduate student, Botucatu Medical School, Botucatu, SP, Brazil
7PhD, MD, Professor, Divisions of Orthopaedic Surgery & Child Health Evaluative Sciences, The Hospital for Sick Children, Bloorview Research Institute, University of Toronto, Ontario, Canada

Article ID: 100031D05LP2017
doi:10.5348/D05-2017-31-OA-7

Address correspondence to:
Luiz Antonio Pellegrino
Rua Sergipe,
673, Apt. 82, São Paulo
Brazil

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Pellegrino LA, Ortolan EVP, de Arruda Lourenção PLT, Corrente JE, Viana AA, Cavalheiro AA, Cavalheiro CR, Gomes F, Narayanan UG. Validation of the Brazilian Portuguese version of caregiver priorities and child health index of life with disabilities. Edorium J Disabil Rehabil 2017;3:56–61.


ABSTRACT

Aims: To assess the reliability and validity of the caregiver priorities and child health index of life with disabilities (CPCHILD) – Brazilian Portuguese Version (BPV), a measure of health status and well-being of children with cerebral palsy.
Methods: After the translation and cross-cultural adaptation of the CPCHILD questionnaire to Brazilian Portuguese previously published, the questionnaire was applied to 104 caregivers of patients with cerebral palsy and was reapplied a second time 2–3 weeks after to measure test-retest reliability (n = 26). The children were classified according to the GMFCS (Gross Motor Function Classification System) from I to V, and demographic data were recorded.
Results: The mean age of patients was 12.44±4.04 years. Mean total score on the CPCHILD was 66.68±16.55. The mean of the absolute differences in total scores between first and second questionnaire administration was 0.35±9.03 points (range -1.57 to 2.26). The ICC for the total questionnaire score was 0.959 and ranged from 0.922 to 0.983. Cronbach’s a coefficient (internal consistence) was 0.933 and was above 0.80 in all domains of the CPCHILD (range 0.849–0.951), except for the 5th domain (0.472). According to Pearson’s correlation coefficient, there was a negative correlation between GMFCS levels and the CPCHILD scores (r= -0.62, p<0.0001).
Conclusion: CPCHILD BPV proved to be a reliable and valid instrument to measure the health status and well-being of cerebral palsy children.

Keywords: Assessment, Developmental disabilities, Health-related quality of life, Questionnaire, Validation


INTRODUCTION

Cerebral palsy is one of the most common causes of chronic disability in childhood with an incidence of 2 to 2.5 per 1,000 live births reported in developed countries [1][2]. In Brazil, there are not studies reporting this incidence, despite an estimated 30,000 new cases per year [3]. Between 25 and 35% of cerebral palsy children are severely affected, experiencing difficulties with life activities, communication and mobility, what strongly impact their lives and the lives of their caregivers [4][5][6] .

Health-related quality of life (HRQL) is of utmost importance in planning a patient-centered health care system [7]. However, HRQL measurement instruments for children and adolescents with severe developmental disabilities (Gross Motor Function Classification System (GMFCS) functional levels IV and V) are scarce [8]. Previous validated HRQF instruments for children or are generic and do not address adequately non-ambulatory children [9][10][11][12], or lack important items for this specific population as comfort, emotions and health status [13][14]. Therefore, all these instruments are not discriminative outcome measures for this specific population.

In 2006, a disease-specific measure of health status and well-being of children with severe cerebral palsy, the caregiver priorities and child health index of life with disabilities (CPCHILD) was developed specifically for this population, from the perspective of the caregivers. It consists of 37 items over six domains: personal care/activities of daily living; positioning, transferring and mobility; comfort and emotions; communication and social interaction; health and overall quality of life [15]. It has proven to be a reliable, and condition-specific measure. The CPCHILD was considered one of the strongest measures of QoL of children with cerebral palsy in a recent systematic review [16].

Given the increased frequency of multinational and multicultural research projects, there is a tendency worldwide in translate and cultural adapt the same already validated questionnaire to several idioms. The CPCHILD have been recently translated and validated in Korean, German and Dutch [17][18][19]. The adaptation of health status questionnaires for new countries, cultures or languages requires a unique method to achieve equivalence between the original source and target versions. For this reason, to translate and adapt CPCHILD to Brazilian Portuguese, the currently recommendations of the American Association of Orthopedic Surgeons (AAOS) was used [20] [21][22]. These results were previously published by our group [23]. After translation and cultural adaptation, it is essential to test its reliability and validity. Therefore, the aim of this study was to validate the CPCHILD questionnaire in a Brazilian Portuguese version.


Materials and Methods

After the translation and cross-cultural adaptation of the CPCHILD questionnaire to Brazilian Portuguese [23], the final version was applied to 104 caregivers of patients with cerebral palsy, from the outpatient clinics of Botucatu Medical School and Bauru State Hospital, between October 2013 and May 2015. The children were classified according to the GMFCS (Classification System) [8] from I to V, and demographic data were recorded.

The written questionnaire was self-administered, and one of the authors was always nearby to explain any doubts about the questions, if needed. The test-retest reliability was assessed in 26 caregivers, between two and three weeks after initial assessment, according to the next appointment in our hospitals.

This study was approved by the local ethics committee and all parents or caregivers signed the informed consent.


Statistical Analysis

A measure is reliable when repeated administrations of the questionnaire to the same caregiver generates similar responses, provided there has been no change in the condition of the patient during the time elapsed between administrations. Test-retest and inter-rater reliability was estimated by using the intraclass correlation coefficient (ICC) (two-way random effect model, assuming a single measurement and absolute agreement) with 95% confidence interval (CI). ICCs ranging from 0 to 0.20 were considered poor, from 0.21 to 0.40 fair, 0.4 to 0.60 moderate, 0.61 to 0.80 good, and from 0.81 to 1.00 excellent [24].

The method of Bland and Altman was used to assess the magnitude of the measurement error and to calculate limits of agreement [25]. The internal consistency, which is the degree of homogeneity of the item within each subscale, was determined by a Cronbach’s a coefficient. Alpha coefficients =0.7 for all domains were considered relevant [26].

Construct validity examines the logical relations that should exist between a measure and characteristics of known groups. The CPCHILD dimensions and total scores were compared across GMFCS levels using analysis of variance (ANOVA). According to previous CPCHILD validations in other languages [17][18][19], we also hypothesized that there would be a negative correlation between GMFCS levels and the CPCHILD scores, analyzed by Pearson’s correlation coefficient. The significant level was set at p<0.05. Data were analyzed with the software SAS for windows, v.9.3.


RESULTS

A total of 104 parents or caregivers of children with cerebral palsy completed the questionnaire. The mean age of patients at the time of survey was 12.44±4.04 years. Demographic data are given in (Table 1). Mean total score on the CPCHILD was 66.68±16.55.

Test-retest reliability was assessed for 26 caregivers. The mean of the absolute differences in total scores between first and second questionnaire administration was 0.35±9.03 points (range -1.57 to 2.26). The ICC for the total questionnaire score was 0.959 and ranged from 0.922 to 0.983 (Table 2). The Bland and Altman plot showed that the measurement error was random and 96.15% of the scores, the limits of agreement, ranged between ±9.2 points of the mean difference (Figure 1). Cronbach’s a coefficient (internal consistence) was 0.933 and was above 0.80 in all domains of the CPCHILD (range 0.849–0.951), except 5th domain (0.472) (Table 2).

Table 3 gives the known group validation results. The total score of the CPCHILD was significantly different according to the GMFCS level (p < 0.0001). Tukey test showed significant differences in total score between levels I–III and IV–V. The differences between the five GMFCS levels were statistically significant in all domains, except for the overall QoL domain (Table 3), (Figure 2).

According to Pearson’s correlation coefficient, there was a negative correlation between GMFCS levels and the CPCHILD scores (r= -0.62, p<0.0001).

In final version of the CPCHILD questionnaire, Section 7 was used to determine whether the items were relevant to individual caregivers and their children [27]. Mean importance rating for all items was 4.18±0.34 with none of the questions rated below 3 (fairly important), what means that none of the items had to be omitted from this Brazilian CPCHILD version.



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Table 1: Patients demographics


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Table 2: Reliability of the CPCHILD domain scores and total score


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Figure 1: Bland and Altman plot of the test-retest reliability of the total score.


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Table 3: Known groups comparison in CPCHILD-scores in GMFCS groups


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Figure 2: Known groups comparison in CPCHILD-scores total in GMFCS groups. Mean and standard deviation of the CPCHILD total score according to GMFCS. Means followed by the same letter do not statistically differ by Tukey pos-hoc test (p<0.05).



DISCUSSION

Our study shows that the Brazilian Portuguese version of CPCHILD is a reliable and valid instrument. The test-retest reliability of our CPCHILD Brazilian Portuguese version showed excellent results for total and for each domain score, except one, that was in the good range. These results are in agreement with the original version, and above previously published results from Korean, German and Dutch versions [15][17][18][19]. The measurement error was random with a small systematic error.

Regarding internal consistency, a Cronbach’s a of all domains, except 5th domain, was above 0.8, what is considered relevant. The lower value of Cronbach’s a obtained in 5th domain also was found in previously CPCHILD validations [17][18][19] and can be explained because this domains is composed by only three items.

For known-groups validity the total score of CPCHILD Brazilian Portuguese version was significantly different according to patients’ GMFCS level, discriminating levels I-III from IV–V, which is consistent with the original version [15].

There are some limitations of this study, both related to the socioeconomic and educational level of our population. First, the time between the test and retest to establish the reliability, was not possible to be fixed in two or four weeks, as in original, German, Dutch and Korean versions [15][17][18][19]. We applied the re-test in the next scheduled appointment, avoiding a visit just for the re-test because of patients’ difficulty to come to the appointments. Nevertheless, our test-retest reliability showed good results, with ICC > 0.81, in all except one domain, and the Cronbach a was above 0.7 in all except one domain, what was considered relevant. Second, the questionnaire in our study was self-administered, supervised by one of the authors that were always nearby to explain any doubts about the questions, if needed. Kaplan et al. [28] compared the results of the quality of well-being scale (QWB), between the forms self-administered and interviewer administered and concluded that the results were equivalent. After the explanations made by one of the authors, the answers were possible because of the difficulties of reading interpretation of some of our caregivers.

As in other languages, there is a lack of instruments to measure quality of life in children with moderate to severe impairment. After the validation, future studies using the Brazilian Portuguese version of CPCHILD could be carried out to monitor therapies. The Brazilian Portuguese version of CPCHILD can be downloaded and printed from the Canadian CPCHILD questionnaire website [27].


CONCLUSION

Caregiver priorities and child health index of life with disabilities (CPCHILD) Brazilian Portuguese Version (BPV) proved to be a reliable and valid instrument to measure the health status and well-being of cerebral palsy children.


REFERENCES
  1. Stanley F, Blair E, Alberman E. Posneonatally acquired cerebral palsy: Incidence and antecedents. In: Stanley F, Blair E, Alberman E, editors. Cerebral Palsies: Epidemiology and Causal Pathways. London: Mac Keith Press: 2000. p. 124–37.    Back to citation no. 1
  2. Bhushan V, Paneth N, Kiely JL. Impact of improved survival of very low birth weight infants on recent secular trends in the prevalence of cerebral palsy. Pediatrics 1993 Jun;91(6):1094–100.   [Pubmed]    Back to citation no. 2
  3. Mancini MC, Fiúza PM, Rebelo JM, et al. Comparação do desenvolvimento de atividades funcionais em crianças com desenvolvimento normal e crianças com paralisia cerebral. Arquivos de Neuro-Psiquiatria 2002;60:446–52.   [CrossRef]    Back to citation no. 3
  4. Rang M, Wright J. What have 30 years of medical progress done for cerebral palsy? Clin Orthop Relat Res 1989 Oct;(247):55–60.   [CrossRef]   [Pubmed]    Back to citation no. 4
  5. Kokkonen J, Saukkonen AL, Timonen E, Serlo W, Kinnunen P. Social outcome of handicapped children as adults. Dev Med Child Neurol 1991 Dec;33(12):1095–100.   [CrossRef]   [Pubmed]    Back to citation no. 5
  6. Hallum A, Krumboltz JD. Parents caring for young adults with severe physical disabilities: Psychological issues. Dev Med Child Neurol 1993 Jan;35(1):24–32.   [Pubmed]    Back to citation no. 6
  7. Berzon RA. Understanding and using health-related quality of life instruments within clinical research studies. In: Staquet MJ, Hays RD, Fayers PM, editors. Quality of Life Assessment in Clinical Trials. New York: Oxford University Press 1998. p. 3–12.    Back to citation no. 7
  8. Palisano R, Rosenbaum P, Walter S, Russell D, Wood E, Galuppi B. Development and reliability of a system to classify gross motor function in children with cerebral palsy. Dev Med Child Neurol 1997 Apr;39(4):214–23.   [Pubmed]    Back to citation no. 8
  9. Landgraf JM, Maunsell E, Speechley KN, et al. Canadian-French, German and UK versions of the Child health questionnaire: Methodology and preliminary item scaling results. Qual Life Res 1998 Jul;7(5):433–45.   [CrossRef]   [Pubmed]    Back to citation no. 9
  10. Varni JW, Seid M, Kurtin PS. PedsQL 4.0: Reliability and validity of the pediatric quality of life inventory version 4.0 generic core scales in healthy and patient populations. Med Care 2001 Aug;39(8):800–12.   [Pubmed]    Back to citation no. 10
  11. Waters E, Davis E, Mackinnon A, et al. Psychometric properties of the quality of life questionnaire for children with CP. Dev Med Child Neurol 2007 Jan;49(1):49–55.   [CrossRef]   [Pubmed]    Back to citation no. 11
  12. Daltroy LH, Liang MH, Fossel AH, Goldberg MJ. The POSNA pediatric musculoskeletal functional health questionnaire: Report on reliability, validity, and sensitivity to change. Pediatric outcomes instrument development group. Pediatric orthopaedic society of North America. J Pediatr Orthop 1998 Sep–Oct;18(5):561–71.   [Pubmed]    Back to citation no. 12
  13. Feldman AB, Haley SM, Coryell J. Concurrent and construct validity of the pediatric evaluation of disability inventory. Phys Ther 1990 Oct;70(10):602–10.   [CrossRef]   [Pubmed]    Back to citation no. 13
  14. Terstegen C, Koot HM, de Boer JB, Tibboel D. Measuring pain in children with cognitive impairment: Pain response to surgical procedures. Pain 2003 May;103(1–2):187–98.   [CrossRef]   [Pubmed]    Back to citation no. 14
  15. Narayanan UG, Fehlings D, Weir S, Knights S, Kiran S, Campbell K. Initial development and validation of the caregiver priorities and child health index of life with disabilities (CPCHILD). Dev Med Child Neurol 2006 Oct;48(10):804–12.   [CrossRef]   [Pubmed]    Back to citation no. 15
  16. Carlon S, Shields N, Yong K, Gilmore R, Sakzewski L, Boyd R. A systematic review of the psychometric properties of quality of life measures for school aged children with cerebral palsy. BMC Pediatr 2010 Nov 9;10:81.   [CrossRef]   [Pubmed]    Back to citation no. 16
  17. Sung KH, Kwon SS, Narayanan UG, et al. Transcultural adaptation and validation of the Korean version of caregiver priorities & child health index of life with disabilities (CPCHILD). Disabil Rehabil 2015;37(7):620–4.   [CrossRef]   [Pubmed]    Back to citation no. 17
  18. Jung NH, Brix O, Bernius P, et al. German translation of the caregiver priorities and child health index of life with disabilities questionnaire: Test-retest reliability and correlation with gross motor function in children with cerebral palsy. Neuropediatrics 2014 Oct;45(5):289–93.   [CrossRef]   [Pubmed]    Back to citation no. 18
  19. Zalmstra TA, Elema A, Boonstra AM, et al. Validation of the caregiver priorities and child health index of life with disabilities (CPCHILD) in a sample of Dutch non-ambulatory children with cerebral palsy. Disabil Rehabil 2015;37(5):411–6.   [CrossRef]   [Pubmed]    Back to citation no. 19
  20. Guillemin F, Bombardier C, Beaton D. Cross-cultural adaptation of health-related quality of life measures: Literature review and proposed guidelines. J Clin Epidemiol 1993 Dec;46(12):1417–32.   [Pubmed]    Back to citation no. 20
  21. Beaton DE, Bombardier C, Guillemin F, Ferraz MB. Guidelines for the process of cross-cultural adaptation of self-report measures. Spine (Phila Pa 1976) 2000 Dec 15;25(24):3186–91.   [Pubmed]    Back to citation no. 21
  22. Beaton DE, Bombardier C, Guillemin F, Ferraz MB. Guidelines for the process of cross-cultural adaptation of self-report measures. Spine 2000;25:3186–91.    Back to citation no. 22
  23. Pellegrino LA, Ortolan EV, Magalhães CS, Viana AA, Narayanan UG. Brazilian Portuguese translation and cross-cultural adaptation of the "caregiver priorities and child health index of life with disabilities" (CPCHILD) questionnaire. BMC Pediatr 2014 Feb 1;14:30.   [CrossRef]   [Pubmed]    Back to citation no. 23
  24. Landis JR, Koch GG. The measurement of observer agreement for categorical data. Biometrics 1977 Mar;33(1):159–74.   [CrossRef]   [Pubmed]    Back to citation no. 24
  25. Bland JM, Altman DG. Statistical methods for assessing agreement between two methods of clinical measurement. Lancet 1986 Feb 8;1(8476):307–10.   [CrossRef]   [Pubmed]    Back to citation no. 25
  26. Terwee CB, Bot SD, de Boer MR, et al. Quality criteria were proposed for measurement properties of health status questionnaires. J Clin Epidemiol 2007 Jan;60(1):34–42.   [CrossRef]   [Pubmed]    Back to citation no. 26
  27. http://www.sickkids.ca/pdfs/Research/CPChild/47701-CPCHILD_Brazilian_Portuguese.pdf    Back to citation no. 27
  28. Kaplan RM, Sieber WJ, Ganiats TG. The quality of well-being scale: Comparison of the interviewer-administered version with a self-administered questionnaire. Psychology & Health 1997;12(6):783–91.   [CrossRef]    Back to citation no. 28

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Acknowledgements
We wish to thank the parents who participated in the study and the staff in the rehabilitation sector of the Bauru State Hospital.

Author Contributions
Luiz Antonio Pellegrino – Substantial contributions to conception and design, Analysis and interpretation of data, Drafting the article, Revising it critically for important intellectual content, Final approval of the version to be published
Erika Veruska Paiva Ortolan – Substantial contributions to conception and design, Analysis and interpretation of data, Drafting the article, Revising it critically for important intellectual content, Final approval of the version to be published
Pedro Luiz Toledo de Arruda Lourenção – Substantial contributions to conception and design, Analysis and interpretation of data, Drafting the article, Revising it critically for important intellectual content, Final approval of the version to be published
José Eduardo Corrente – Substantial contributions to conception and design, Analysis and interpretation of data, Drafting the article, Revising it critically for important intellectual content, Final approval of the version to be published
Ariane Aparecida Viana – Substantial contributions to conception and design, Acquisition of data, Analysis and interpretation of data, Revising it critically for important intellectual content, Final approval of the version to be published
Cleber Ricardo Cavalheiro – Substantial contributions to conception and design, Analysis and interpretation of data, Drafting the article, Revising it critically for important intellectual content, Final approval of the version to be published
Felipe Gomes – Substantial contributions to conception and design, Acquisition of data, Analysis and interpretation of data, Drafting the article, Revising it critically for important intellectual content, Final approval of the version to be published
Unni G. Narayanan – Substantial contributions to conception and design, Revising it critically for important intellectual content, Final approval of the version to be published
Guarantor of submission
The corresponding author is the guarantor of submission.
Source of support
None
Conflict of interest
Authors declare no conflict of interest
Copyright
© 2017 Luiz Antonio Pellegrino et al. This article is distributed under the terms of Creative Commons Attribution License which permits unrestricted use, distribution and reproduction in any medium provided the original author(s) and original publisher are properly credited. Please see the copyright policy on the journal website for more information.



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