INTRODUCTION AND PURPOSE
Children with cerebral palsy (CP) may experience restricted participation as a result of their impaired motor function and activity limitations. Within the International Classification of Functioning, Disability and Health, participation restrictions have been defined as “problems an individual may experience in involvement in life situations.”1 In children with CP, this may include participation with peers and family, at school and in leisure activities.2 In rehabilitation of children with CP, goal setting aims at retention or improvement of participation at home, at school, and in society. As a result, defining the level of participation is warranted to identify potential participation problems, to support goal setting, to evaluate changes in participation over time, or to monitor therapy.3 Despite this need, the number of available instruments to measure participation in children with CP is limited. In the Netherlands, 4 questionnaires are recommended in a guideline of the Netherlands Society of Rehabilitation Specialists on diagnosis and treatment of children with spastic CP,3 that is, the APCP (Assessment of Preschool Children's Participation); the CAPE (Children's Assessment of Participation and Enjoyment); the LAQ-CP (Lifestyle Assessment Questionnaire); and the LifeH (Assessment of Life Habits). In contrast to the APCP, CAPE, and LifeH, the LAQ-CP is not available in Dutch. The LAQ-CP is a condition-specific parent/carer-completed questionnaire, which measures the effect of disability on participation of children with CP ages 3 to 10 years as well as on their families' participation.4 The latter distinguishes the LAQ-CP from the other recommended questionnaires, which are restricted to participation of the child.5 The LAQ-CP consists of 46 items with 6 domains: physical independence, clinical burden, mobility, schooling, economic burden, and social integration.4,6 The required time to complete the questionnaire is 20 minutes.6 The item scores of each dimension can be summed and scaled, to derive a dimensional score on a quasicontinuous scale from 0 to 100. The 6 dimension scores may be used to describe the child by a descriptive profile. In addition, the Lifestyle Assessment Score can be calculated. Dimensional weightings are integrated in this total impact score, which is expressed as a percentage. A higher Lifestyle Assessment Score indicates a more severe effect on the child's life.4,6 Mackie et al4 evaluated reliability and validity of the LAQ-CP in children aged 3 to 10 years. Test-retest reliability was found to be high (r = 0.97, P < .0001) and differences between individuals remained large and stable (χ2 = 0.29, not significant). Convergent validity has been investigated by comparing LAQ-CP scores with functional limitation scores as measured by the Central Motor Deficit Form.7 A significant correlation (r = 0.76, P < .0001) was reported, indicating good construct validity. Internal consistency and responsiveness have not been assessed.4–6 Thus far, the LAQ-CP is only validated for discriminative purposes. Additional research is needed to determine whether it can be used as an evaluative or predictive measure.6
Morris et al5 have recommended the LAQ-CP in their review on measures of participation for children with CP. It has a broad coverage of most domains of the International Classification of Functioning, Disability and Health and is distinctive from other questionnaires because of the focus on the effect on participation of the family unit, in addition to participation of the child.5 Because the LAQ-CP measures a particular construct with regard to participation, rehabilitation of children with CP may benefit from a Dutch translation. Hence, the aim of this project was to produce a high-quality Dutch translation of the LAQ-CP, adapted for cross-cultural differences.
A review of guidelines for cross-cultural translation and adaptation of questionnaires by Epstein et al8 did not lead to a consensus in methods. Nonetheless, they recommend using a validated approach that preferably involves more than 1 translator, reconciliation of the multiple translations into 1, and an expert committee.8 The guideline provided by Beaton et al9 includes all these stages. In addition, it contains a back-translation.8,9 We consider this is as an advantage, because it can facilitate communication with the developers of the original questionnaire.8 A drawback of the guideline is that involvement of the target population is limited to the pilot-test at the end of the process.
The translation process consisted of 6 stages, following the guideline for cross-cultural adaptations by Beaton et al9,10 (Figure 1). The project was coordinated by a project leader with a background in physical therapy and experience on 2 projects concerning clinimetrics. The project was conducted by the Department of Rehabilitation Medicine at Maastricht University and Adelante Centre of Expertise in Rehabilitation and Audiology from December 2015 to July 2016. Before stage 1, a preparation stage was performed to facilitate the translation process. During the preparation stage, translators and members of the expert group were recruited, cooperation agreements were made, report forms were created, and the pilot-test prepared.
The LAQ-CP was independently translated from English into Dutch by 2 translators. Both translators were bilingual, with Dutch as their primary language. One translator translated the questionnaire from a clinical viewpoint, whereas a professional translator translated the questionnaire without medical background and without knowledge of the concept the questionnaire aims to measure. Both translators provided a written report of the translation process, including challenging phrases, uncertainties, and reasoning for their decisions. Stage 1 resulted in 2 Dutch translations: T1 and T2.
Both translators from stage 1 and the project leader combined the 2 translations of the LAQ-CP into 1 version of the questionnaire: T12. A report clarified the consensus process.
The translation of the LAQ-CP (T12) was independently back-translated from Dutch into English by 2 translators. Both professional translators were bilingual, with English as their primary language. The translators had no knowledge of the concept the questionnaire aims to measure and were masked to the original English version of the questionnaire. Both translators provided a written report of the translation process, including challenging phrases, uncertainties, and reasoning for their decisions. Stage 3 resulted in 2 English translations: BT1 and BT2.
An expert group composed a prefinal version of the LAQ-CP, on the basis of the translations and reports of the previous stages. The expert group consisted of 7 people: the project leader, the 4 translators, a pediatric physical therapist, and a pediatric rehabilitation physician. The last 2 both have approximately 30 years of clinical experience in pediatric rehabilitation. They participate in CP-Net, which is a Dutch network of health care professionals, researchers, patients with CP and their parents. The expert group made a report of the process during stage 4. One of the developers of the original English version of the LAQ-CP was consulted on cross-cultural issues during this as well as previous stages.
The prefinal translation of the LAQ-CP was pilot-tested in a convenience sample of parents of children with CP ages 3 to 10 years. Direct recruitment of potential participants known within the pediatric rehabilitation network of the experts was through an invitation letter. Parents were asked for their opinions on the questionnaire by a digital survey. Questions were primarily with regard to comprehensibility and applicability. No personal or medical data were collected. Furthermore, this study was considered not to lead to infringement of the physical or psychological integrity of our participants. Hence, ethical approval was not required, following the “Wet medisch-wetenschappelijk onderzoek met mensen” (WMO; Medical Research Involving Human Subjects Act).11
The translation process was assessed during a process audit by means of review of the translations and reports of stages 1 through 5 by one of the developers of the original English version of the LAQ-CP. She judged the process and quality of the translation and created a report including comments to be considered by the expert group.
The project resulted in the Dutch translation of the LAQ-CP, entitled “Vragenlijst ter beoordeling van de leefstijl van kinderen.” The final version of the questionnaire is provided as Supplemental Digital Content 2 (available at: https://links.lww.com/PPT/A165).
Stages 1 and 2 (Forward Translation)
Throughout the translation process, several arguments were taken into consideration. Simplicity and terms generally used by clinical practitioners in their communication with parents were preferred, in order that the questionnaire be comprehensible for parents across socioeconomic groups. Moreover, consistency of terms and syntax was strived for throughout the questionnaire.
The translators experienced translation of response options of items 8, 11, and 27 as challenging.
Several adaptations to the questionnaire were required because of cross-cultural differences. The types of services (item 11) and school types (item 26) that are accessible in the Netherlands are not the same as the types of services and school types that are provided in the United Kingdom. Subsequently, the response options were adapted to the situation in the Netherlands. The translation regarding types of services was formulated in a way that it remains applicable after future changes of regulations.
Amounts in pounds (items 13 and 14) were converted into amounts in euros. The value in euros for each response option is equal to the value in pounds, to maintain generalization between the questionnaires. However, the amounts were rounded. Distances in miles (item 23) were converted to kilometers, using the same approach for conversion.
Because cereal (item 17) is not as common to eat for breakfast in the Netherlands as it is in the United Kingdom, the activity “eating a bowl of muesli” was replaced by “eating a bowl of soup.”
Stages 3 and 4 (Back-Translation and Expert Group)
The expert group addressed several fundamental remarks.
The abbreviation of the English name of the questionnaire (ie, LAQ-CP) was preferred over a new Dutch abbreviation. For clarification of the abbreviation, besides the Dutch name of the questionnaire the English name was included.
In the introduction text, the translation “families” was replaced by the more specific “gezinnen” (meaning immediate families).
The expert group questioned why “leg support” (item 5) is mentioned separately, whereas support to the upper limb is not. Therefore, one of the designers of the original English questionnaire was consulted. The designer answered that ever since the questionnaire was designed, arm/wrist splints and lycra suits have been used frequently. Therefore, in the Dutch translation “body support” was used. Examples were included to clarify for parents.
The expert group felt that eating a bowl of cereal and eating a bowl of soup are not equally difficult (item 17). Therefore, the Dutch T12 translation “eating a bowl of soup” was replaced by “eating a bowl of yoghurt.”
The expert team did not agree as to what is meant by the original item “getting out of bed” (item 17): the activity getting out of bed (ie, coming from supine position to sitting position to standing) or the activity of getting up in the morning (ie, the morning routine, including grooming, getting dressed, etc). Consultation with one of the designers of the original English questionnaire clarified that the former was intended. The Dutch translation was amended accordingly.
The expert team did not agree as to what is meant by the original term “areas” (item 20). Hence, one of designers of the original English questionnaire was consulted. The designer answered that it concerns other daily activities and it is not about other physical locations. The Dutch translation was changed correspondingly.
Moreover, the response options of items 8, 11, and 27 were amended after expert group discussion.
Stage 5 (Pilot-Test)
Seven parents were recruited for the pilot-test. Respondents commented on multiple layout issues. They felt the layout was disorderly, disliked circling answers, preferred more space to write down remarks, and disliked the childish pictures. Accordingly, the layout of the English version was adapted to the desires of the users, for example by including checking boxes, adding line breaks, and removing the pictures. Moreover, several minor changes in wording were made. In addition, respondents made content-related comments, for example regarding questions' lack of specificity. To retain comparability between the Dutch translation and the original English questionnaire, these did not lead to changes to the construct to be measured.
Stage 6 (Process Audit)
The process auditor stated that the process had been comprehensive and valued the quality of the work. Based on comments of the process auditor, some additional changes were made.
The response options of item 11 were reconsidered. It was ensured that the number of response options in the Dutch translation is equal to the English questionnaire, to make generalization of the score calculation possible.
During the translation process, the activity “eating a bowl of cereal” (item 17) had been adapted to “eating a bowl of yoghurt,” because this is a more common activity in the Netherlands and was considered equally difficult to perform by the expert group. As a result of the process audit, however, eating yoghurt was changed back to eating soup, which in the end was estimated most similar to eating cereal regarding difficulty to perform the activity.
The project resulted in a Dutch translation of the LAQ-CP, adapted for cross-cultural differences. The key strength of the project is the extensive procedure that was used for development of the translated questionnaire, consisting of duplicate forward- as well as back-translations, criticism by an expert group, pilot-testing, and a process audit. We feel that this approach was successful in capturing the relevant cross-cultural differences and making valid adaptations. Specifically, the expert group discussions revealed remarkable insights. The number of participants of the pilot-test, however, was small and its scope relatively narrow, which resulted in limited information on perception of the target population regarding the questionnaire.
The Dutch LAQ-CP is promising to contribute to clinical practice and as an outcome for research purposes, because it provides a valuable addition to measure participation in children with CP. Despite its promising benefits, the Dutch LAQ-CP should not be used in clinical practice and research until it has been validated. This is an important issue for future research. Psychometric properties of the instrument should be established with Dutch children. It is recommended to investigate for which subpopulations (eg, regarding age) reliability, validity, and responsiveness are satisfying. The amended layout of the Dutch LAQ-CP is expected to result in a slightly higher usability and reliability than obtained from the original English version. Validity and responsiveness, however, are expected to be comparable.
We are grateful to Professor Helen McConachie for performing the process audit and the valuable discussion on cross-cultural differences.
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