http://informahealthcare.com/dre ISSN 0963-8288 print/ISSN 1464-5165 online Disabil Rehabil, 2015; 37(7): 620–624 ! 2014 Informa UK Ltd. DOI: 10.3109/09638288.2014.932449

ASSESSMENT PROCEDURES

Transcultural adaptation and validation of the Korean version of Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD) Ki Hyuk Sung1*, Soon-Sun Kwon2*, Unni G. Narayanan3, Chin Youb Chung4, Kyoung Min Lee4, Seung Yeol Lee1, Damian J. Lee5, and Moon Seok Park4 1

Department of Orthopaedic Surgery, Myongji Hospital, Kyungki, Korea, 2Biomedical Research Institute, Seoul National University Bundang Hospital, Kyungki, Korea, 3Divisions of Orthopaedic Surgery & Child Health Evaluative Sciences, The Hospital for Sick Children; and Bloorview Research Institute, University of Toronto, Toronto, Canada, 4Department of Orthopaedic Surgery, Seoul National University Bundang Hospital, Kyungki, Korea, and 5Division of Restorative Science and Proshodontics, College of Dentistry, The Ohio State University, Columbus, OH, USA

Abstract

Keywords

Purpose: The aim of this study was to translate and transculturally adapt the Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD) questionnaire into Korean language, and to test the reliability and validity, including the internal consistency, known-group validity and factor analysis of the Korean version of the CPCHILD. Methods: A Korean version of CPCHILD was produced according to internationally accepted guidelines. For validity testing, 194 consecutive parents or caregivers of children with cerebral palsy (CP) were recruited and completed the questionnaire. Internal consistency, test–retest reliability, and known-groups validity were evaluated and factor analysis was performed to validate the Korean version of the CPCHILD. Results: In terms of internal consistency, a Cronbach’s alpha was above 0.90 in all domains of the CPCHILD (range 0.921 to 0.966), except the 5th domain (0.628). In terms of known-groups validity, the total score of the CPCHILD was significantly different according to the Gross Motor Function Classification System (GMFCS) level (p50.001). Intra-class correlation coefficient spanned from 0.517 to 0.801. Factor analysis showed that the five-factor solution of the CPCHILD explained 76.7% of the variance with 59.0, 6.5, 5.1, 4.2 and 3.2% of variance by each components number. Conclusions: The Korean version of CPCHILD was found to be a reliable and valid questionnaire of caregivers’ perspectives on the health-related quality of life in severely affected children with CP. However, the Korean version of CPCHILD contains some redundant items, and factor analysis suggested a five-domain questionnaire.

Korean, the Caregiver Priorities & Child Health Index of Life with Disabilities, transcultural adaptation, validation History Received 29 November 2013 Revised 8 May 2014 Accepted 04 June 2014 Published online 25 June 2014

ä Implication for Rehabilitation 



The Korean version of CPCHILD is a reliable, internally consistent, valid instrument for assessing the health-related quality of life in severely affected children with CP from the perspective of caregivers. After the transcultural adaptation and validation of the Korean CPCHILD, it can be reliably used in clinical and research settings to evaluate the health-related quality of life in Korean patients with CP.

Introduction Cerebral palsy (CP) is a group of permanent disorders of the development of movement and posture, causing limitation of activity, that are attributed to a non-progressive disturbance that occurred in the developing fetal or infant brain [1]. Reduced activity levels and participation restrictions due to these *These authors are co-first authors. Address for correspondence: Moon Seok Park, MD, Department of Orthopaedic Surgery, Seoul National University Bundang Hospital, 300 Gumi-Dong, Bundang-Gu, Sungnam, Kyungki 463-707, Korea. Tel: 82-31-787-7203. Fax: 82-31-787-4056. E-mail: [email protected]

impairments may lead to a reduced quality of life, compared to their typically developing peers [2,3]. Due to the increased need to measure health-related quality of life in patients with CP, various assessment tools and quetsionnaire have been developed. In order to have worldwide application of the assessment tools and questionnaires, translation and transcultural adaptation from the original version is necessary, while maintaining the original meaning. Translated versions of any questionnaire should acquire an essential equivalence with the originals semantically, idiomatically, experientially and conceptually [4]. In addition, validity testing is necessary for the adapted version. The Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD) was developed to assess the health-

Validation of Korean-CPCHILD

DOI: 10.3109/09638288.2014.932449

related quality of life of children with severe developmental disabilities from the perspective of caregivers [5]. It consists of 37 items over six domains: Personal Care/Activities of Daily Living (nine items); Positioning, Transferring and Mobility (eight items); Comfort and Emotions (nine items); Communication and Social Interaction (seven items); Health (three items); and Overall Quality of Life (one item). A systematic review found that the CPCHILD was one of the strongest measures of QOL in children with CP [6]. Recently, translation and transcultural adaptation of the CPCHILD have been performed for the German and Brazilian Portuguese languages. Validity testing of the German CPCHILD showed relevant known-group validity and test–retest reliability [7,8]. The aim of this study was to translate and transculturally adapt the CPCHILD questionnaire into the Korean language, and to test the reliability and validity, including the internal consistency, known-group validity and factor analysis of the Korean version of the CPCHILD.

Methods This study was approved by the institutional review board at our hospital, and informed consent was obtained from all patients’ parents, and relevant assent was obtained from patients. This study consisted of two parts: (1) the translation and transcultural adaptation of the English version of the CPCHILD into Korean language and (2) the validity testing of the Korean version of the CPCHILD. Translation and transcultural adaptation process Translation and transcultural adaptation processes were conducted in accord with published international recommendations [4,9–11]. Permission was obtained from the developer to use and translate the CPCHILD into Korean using the international guidelines. Forward translation and reconciliation Two persons (native Korean speakers fluent in English: an orthopedic surgeon and a non-medical translator) separately translated the original English version of the CPCHILD into Korean. At a consensus meeting attended by the two translators who performed the forward translation, and three orthopedic surgeons (MSP, KML and SYL), a single Korean version was obtained by reconciling the two Korean versions. Back translation The reconciled Korean version of the CPCHILD was backtranslated into English by two bilingual native English speakers, who were both Korean-Americans fluent in Korean (one a medical professional and the other a professional translator) and who were unaware of the original English version of the CPCHILD. Review of back translation and harmonization The back-translated version of the CPCHILD was compared with the original version in a consensus committee composed of four pediatric orthopedic surgeons, one regular nurse, two clinical research coordinators who specialized in orthopedic scoring systems, one bilingual medical professional (a Korean dentist with English as a first language), and a native Korean English nonmedical professional who specialized in educational psychology. Each committee member independently compared the back-translated and original version of the CPCHILD on an item-by-item basis, and evaluated equivalence with the originals semantically, idiomatically, experientially and conceptually

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[4] according to the following: ‘‘reject’’, ‘‘accept with modification’’ and ‘‘accept’’. After individual item had been evaluated, all items evaluated as ‘‘reject’’ or ‘‘accept with modification’’ were discussed and revised to produce the final Korean version of the CPCHILD. Cognitive debriefing and proof reading The Korean version of the CPCHILD was tested on 20 Korean patients and their parents or caregivers. The clinical research coordinators (MSY and HMK) asked parents or caregivers whether they understood each items, and whether they had any problem in answering the Korean version of the CPCHILD. If necessary, ambiguous expressions were modified by discussion. Finally, errors in the final Korean version of the CPCHILD were corrected. Testing validity of the Korean version of the CPCHILD Consecutive children and adolescents with cerebral palsy who visited our outpatient clinics for regular follow-ups since October 2012 and whose parents or caregivers agreed to participate were enrolled in this study. Parents or caregivers provided informed consent to a pediatric orthopedic surgeon (M.S.P.). Data on sex, age, type of limb involvement and Gross Motor Function Classification System (GMFCS) level were obtained. Two hundred parents or caregivers were invited to complete the Korean version of the CPCHILD at initial assessment and questionnaires were collected by two research assistants (R.S.Y. and H.M.K.). Of them, 30 patients were invited for the testretest reliability and given the Korean CPCHILD 4 weeks after initial assessment. In general, three weeks were considered long enough to prevent recall, but sufficiently short to ensure that the patients’ status would not change significantly [12]. Standardized scores from 0 (worst) to 100 (best) were calculated for each of the six domains as well as the total survey. These scores were derived from the raw item scores divided by the maximum item score, multiplied by 100. Statistical analysis Internal consistency, test–retest reliability and known-groups validity were evaluated to validate the Korean version of the CPCHILD. The internal consistency, which is the degree of homogeneity of the items within each subscale, was determined by a Cronbach’s alpha coefficient. A Cronbach’s alpha coefficient 0.7 was considered to indicate relevant internal consistency [13]. Test–retest reliability, which is stability across repeated measurements, was evaluated using the Intraclass Correlation Coefficient (ICC) (two-way random effect model, assuming a single measurement and absolute agreement) with 95% confidence intervals. An ICC of 40.70 was regarded as indicative of good reliability. Known group validity, which estimates how well the questionnaire discriminates between groups, was analyzed by examining the differences in CPCHILD score according to GMFCS level. GMFCS is a valid, reliable and stable tool to classify the gross motor function in patients with CP [14–17]. Differences in the CPCHILD score according to GMFCS level were analyzed using the Kruskal–Wallis test, which was considered to be known-groups validity. Mann–Whitney’s test after the Bonferroni correction was used as post-hoc test. Factor analysis, which is a statistical technique that reduces a large number of interrelated questions to a smaller number of underlying common factors or domains that are primarily responsible for variation in the data [18], was performed to test the redundancy of items and the uni-dimensionality of subscales.

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Factor analysis was performed using total items to rank their relative significance. The factor analysis equation can be written in matrix form: Y ¼ lF + ", where Y is a p  1 vector of variables,  is a p  m matrix of factor loadings, F is a m  1 vector of factors and " is p  1 vector of error factors [19]. Because of differences in the units of variables used in factor analysis, the variables were standardized and a correlation matrix of variables was used to obtain eigenvalues. In order to facilitate interpretation of factor loadings, a principal components analysis was performed on the raw scores, and the factor structure rotated using orthogonal rotations (VARIMAX). Only factor loadings above 0.50 were considered to be indicative of item loading [20]. The suitability of factor analysis was determined by KaiserMeyer-Olkin (KMO) measure of sampling adequacy as a measure of homogeneity of variables [19]. A KMO measure of above 0.6 is acceptable for factor analysis. Known-groups validity was tested in patients including all GMFCS level. Internal consistency testing and factor analysis were performed and were limited to the patients with GMFCS III, IV and V. Statistical analysis was performed using SPSS version 20.0 for windows (IBM Co., Chicago, IL). All statistics were two-tailed and p values 50.05 were considered statistically significant.

Test–retest reliability was assessed for the 26 parents of children with CP who completed a second administration of the CPCHILD questionnaire 4 weeks after the first. The mean of the absolute differences in total scores between first and second administration was 4.2 ± 4.5 points (range 0.0 to 15.2). The ICC for the total questionnaire score was 0.517 and ranged from 0.414 to 0.801 for the six domain scores. In terms of known-groups validity, the total score of the CPCHILD was significantly different according to the GMFCS level (p50.001). Post-hoc test showed significant differences in total score between each level (Table 3). The factor analysis showed that KMO value was 0.900 and Barlett’s test was significant. The five-factor solution of the CPCHILD explained 76.7% of the variance with 57.8, 64.3, 5.2, 4.2 and 3.1% of variance by each components number. The eigenvalues of all five components exceeded one with 21.4, 2.4, 1.9, 1.6 and 1.2 seen for each. These five components did not correspond to the six subscales of the original CPCHILD. Components 1 corresponded to most of 1st domain and some of 2nd and 3rd domain. Components 2 corresponded to most of 3rd domain and some of 1st and 2nd domain, and components 3 to all of 4th domain. Components 4 corresponded to some of 2nd domain and components 6 to all of 5th and 6th domain and some of 3rd domain (Table 4).

Results Discussion

Translation and transcultural adaptation During the harmonization process for transcultural adaptation, there were major concerns on equivalence in five items (question 10 in 2nd domain, question 23 in 3rd domain, question 10 in 7th domain, question 3 in 8th domain and question 4 in 9th domain) (Table 1). During the discussion about these items, the committee checked that the translation was comprehensive, and a liberal translation was necessary in terms of experiential equivalence. In addition, there were minor concerns on equivalence in six items. For these items, a liberal translation was made. The committee verified the transcultural equivalence of the original English and final Korean versions.

This study shows that the Korean version of CPCHILD is a reliable, internally consistent, valid instrument. Therefore, it can be reliably used in clinical and research settings to evaluate the Table 2. Patients demographics and CPCHILD scores. Number of patients Gender (Male/Female) Mean patient’s age (years) GMFCS level (I/II/III/IV/V) Caregiver completing questionnaire (Father/mother/grandparents)

Validity testing Finally, a total of 194 parents or caregivers of children with CP were recruited and completed the questionnaire. Of the 194 parents, 38 were fathers, 148 mothers and seven grandparents. The mean age of patients at the time of survey was 12.9 ± 4.9 years. Mean total score on the CPCHILD was 71.1 ± 27.1 (range 3.9 to 100.0; Table 2). Cronbach’s alpha was above 0.90 in all domains of the CPCHILD (range 0.921 to 0.966), except 5th domain (0.628).

1st domain 2nd domain 3rd domain 4th domain 5th domain 6th domain Total

138/56 12.9 ± 4.9 (3.5 to 19.9) 63/56/34/20/21 38/149/7 CPCHILD Score in patients with GMFCS level IV and V 22.7 ± 21.7 (0 to 69.1) 26.9 ± 24.2 (0 to 83.3) 46.3 ± 30.2 (0 to 100.) 43.7 ± 23.0 (9.5 to 100) 64.4 ± 22.9 (0 to 100) 46.8 ± 23.1 (0 to 100) 34.9 ± 22.0 (3.9 to 81.6)

GMFCS, Gross Motor Function Classification System.

Table 1. Items requiring modification during the equivalence test. Question

Concerns

Solution Korean expression corresponding to ‘‘floor’’ was added to the Korean version. Korean expression corresponding to ‘‘floor’’ was added to the Korean version. Modification of Korean school grade was done. ‘‘Ungraded’’ was deleted in the Korean version.

Q10 (2nd and 7th domain)

Getting in and out of bed

Many Korean people do not use a ‘‘bed’’, in terms of experiential equivalence.

Q23

While lying down in bed

Many Korean people do not use a ‘‘bed’’, in terms of experiential equivalence.

Q3 (8th domain)

School grade

Q4 (9th domain)

Foster parent Adoptive parent

School structure in Korea is different from that in the West, in terms of experiential equivalence. There is no ungraded school in Korea, in terms of experiential equivalence. These two words have the same meaning in Korean.

(3rd domain)

These two words were expressed in one word in the Korean version.

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Table 3. CPCHILD scores by GMFCS level. GMFCS level

1st domain 2nd domain 3rd domain 4th domain 5th domain 6th domain Total score Post-hoc test for total score p Value Post-hoc test for total score p Value

I (n ¼ 63)

II (n ¼ 56)

III (n ¼ 34)

IV (n ¼ 20)

V (n ¼ 21)

p Value

91.8 ± 13.2 94.5 ± 9.7 94.7 ± 7.7 86.9 ± 18.3 84.9 ± 17.5 71.4 ± 24.3 91.9 ± 10.0 I–II 0.001 II–IV 50.001

76.2 ± 21.1 83.1 ± 14.4 86.6 ± 13.8 76.4 ± 20.4 74.5 ± 19.9 59.6 ± 19.6 80.3 ± 14.9 I–III 50.001 II–V 50.001

49.2 ± 26.9 59.1 ± 23.5 74.7 ± 22.1 63.0 ± 23.3 74.4 ± 24.1 55.9 ± 24.0 61.3 ± 21.2 I–IV 50.001 III–IV 0.008

32.9 ± 21.0 39.7 ± 21.8 61.6 ± 27.9 50.2 ± 23.5 64.5 ± 25.8 50.0 ± 21.0 46.0 ± 20.1 I–V 50.001 III–V 50.001

13.0 ± 17.8 14.8 ± 20.1 31.8 ± 25.2 37.5 ± 21.3 64.3 ± 20.4 43.8 ± 25.0 24.3 ± 18.6 II–III 50.001 IV–V 50.001

50.001 50.001 50.001 50.001 50.001 50.001 50.001

GMFCS, Gross Motor Function Classification System.

Table 4. Factor analysis of CPCHILD questionnaire. Questions Percentage of variation each factor explains Q2 (1st domain) Q3 (1st domain) Q4 (1st domain) Q5 (1st domain) Q6 (1st domain) Q7 (1st domain) Q8 (1st domain) Q9 (1st domain) Q13 (2nd domain) Q19 (3rd domain) Q20 (3rd domain) Q1 (1st domain) Q10 (2nd domain) Q11 (2nd domain) Q12 (2nd domain) Q14 (2nd domain) Q18 (3rd domain) Q21 (3rd domain) Q22 (3rd domain) Q23 (3rd domain) Q24 (3rd domain) Q27 (4th domain) Q28 (4th domain) Q29 (4th domain) Q30 (4th domain) Q31 (4th domain) Q32 (4th domain) Q33 (4th domain) Q15 (2nd domain) Q16 (2nd domain) Q17 (2nd domain) Q34 (5th domain) Q35 (5th domain) Q36 (6th domain) Q25 (3rd domain) Q26 (3rd domain)

Factor 1

Factor 2

Factor 3

Factor 4

Factor 5

59.0%

6.5%

5.1%

4.2%

3.2%

0.56 0.81 0.72 0.78 0.86 0.82 0.80 0.77 0.53 0.51 0.64 0.45 0.37 0.45 0.32 0.44 0.29 0.43 0.31 0.32 0.16 0.31 0.23 0.25 0.29 0.23 0.24 0.21 0.32 0.53 0.50 0.06 0.28 0.07 0.14 0.01

0.48 0.20 0.38 0.41 0.27 0.33 0.24 0.19 0.50 0.50 0.33 0.65 0.77 0.62 0.74 0.62 0.72 0.59 0.77 0.78 0.77 0.41 0.25 0.23 0.55 0.37 0.06 0.26 0.40 0.44 0.30 0.17 0.12 0.22 0.44 0.42

0.42 0.28 0.20 0.20 0.22 0.21 0.20 0.20 0.04 0.34 0.35 0.39 0.20 0.09 0.17 0.25 0.33 0.27 0.34 0.34 0.27 0.68 0.61 0.82 0.60 0.76 0.57 0.62 0.09 0.14 0.30 0.03 0.19 0.33 0.24 0.23

0.04 0.06 0.15 0.09 0.01 0.28 0.37 0.16 0.52 0.32 0.30 0.18 0.27 0.42 0.29 0.28 0.20 0.47 0.22 0.13 0.05 0.06 0.06 0.10 0.16 0.04 0.45 0.44 0.65 0.58 0.61 0.11 0.14 0.34 0.39 0.47

0.24 0.30 0.18 0.21 0.14 0.13 0.07 0.25 0.09 0.13 0.10 0.14 0.14 0.11 0.04 0.20 0.21 0.09 0.17 0.14 0.22 0.28 0.43 0.03 0.13 0.16 0.21 0.16 0.15 0.15 0.08 0.79 0.71 0.63 0.48 0.47

Bold numbers represent the most appropriate components responding to each item.

health-related quality of life in Korean patients with severe CP from the perspective of caregivers. During the translation and transcultural adaptation process, some items of the CPCHILD require careful discussion to ensure that items had the same meaning as in the original. Korean culture differs substantially from that in the West, particularly in terms of

sleeping patterns. Although ‘‘bed’’ appears three times in the original CPCHILD (question 10 in 2nd domain, question 23 in 3rd domain, and question 10 in 7th domain), unlike the West, many Korean people do not use a bed, but rather use the underfloor heating system, called ‘‘Ondol’’, which is the traditional living space for sleeping and resting, and requires squatting or sitting in the tailor position, similar to ‘‘Tatami’’ in Japan. School structure in Korea is different from that in the West. Although school grade is classified as 1st grade to 12th grade in the original CPCHILD (question 3 in 8th domain), Korean school is graded as 1st to 6th grade in the elementary school, 1st to 3rd in middle school, and 1st to 3rd in high school. In addition, ‘‘ungraded’’, which appeared in the original version (question 3 in 8th domain), was deleted in the Korean version of the CPCHILD, because there is no ungraded school in Korea. Although ‘‘foster parent’’ and ‘‘adoptive parent’’ appears in the original version (question 4 in 9th domain), these two words have the same meaning in Korean. Therefore, these two words were expressed in one word in the Korean version. All these cross-language and trancultural issues were addressed and discussed to achieve consensus. The original version of CPCHILD showed excellent test–retest reliability of the CPCHILD for the total and for each of the domain scores (ICC, 0.88 to 0.96) [5]. However, the present study showed lower test–retest reliability than the original and German versions [7]. In addition, the fifth domain had lower reliability (ICC, 0.414), with only three questions. We believed the reason for this to be the relatively longer test–retest interval (4 weeks) in our study than that in the original and German versions (2 weeks). Test–retest reliability results could be affected by recall bias or symptom change. Therefore, the test–retest interval needs to be short enough to evaluate chronic symptoms, and long enough not to be influenced by recall bias. For known-groups validity, all domain scores and the total score of the CPCHILD were significantly different according to patients’ GMFCS level, which is consistent with a previous study [5,7]. It is demonstrated that children with higher GMFCS levels (poor function) had lower CPCHILD scores and the CPCHILD was able to discriminate between groups. In terms of internal consistency, a Cronbach’s alpha of all domains except 5th domain is above 0.90. Although a Cronbach’s alpha coefficient of 0.7 indicates satisfactory internal consistency, an excessively high value means that the item correlation is too high and the some items may be redundant for a single subscale [21]. The factor analysis suggested a reduced number of five domains, which did not correspond to the six domains of the original CPCHILD. Furthermore, a short form of CPCHILD with five domains could be developed by removing the redundant items, especially in 1st and 2nd domain.

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There are some limitations of this study. First, a previous study investigated the responsiveness of CPCHILD and showed significantly improved CPCHILD scores in all the subscales following hip reconstructive surgery in children with severe CP [22]. However, the responsiveness of the Korean version of CPCHILD was not evaluated in this study, which is necessary for assessing validity. Therefore, further studies on responsiveness after therapeutic intervention in these patients are needed. Second, intelligence and educational level were not considered for parents or caregivers, which could have affected the understanding of the questionnaire and eventually the response rates. However, no parent or caregiver reported difficulty in completing the questionnaire. We conclude that readability and understandability were not an issue with the Korean CPCHILD. In the present study, the CPCHILD was translated and adapted transculturally into the Korean language in accordance with international guidelines. The Korean version of CPCHILD is a reliable and valid instrument to assess the health-related quality of life in severely affected children with CP from the perspective of caregivers. The Korean version of CPCHILD can be reformulated by eliminating the redundant items and dividing it into five domains.

Acknowledgements

Disabil Rehabil, 2015; 37(7): 620–624

6. 7.

8.

9.

10.

11. 12. 13.

The authors wish to thank Mi Seon Yoo, BS and Hyun Mi Kim, BS for data collection.

14.

Declaration of interest

15.

The authors report no declarations of interest. This research was supported by Basic Science Research Program through the National Research Foundation of Korea (NRF) funded by the Ministry of Science, ICT & Future Planning (NRF-2013R1A1A1012298).

16. 17.

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Transcultural adaptation and validation of the Korean version of Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD).

The aim of this study was to translate and transculturally adapt the Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD) que...
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