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Translation, cultural adaptation and validation of a patient-reported experience measure for children
Anna Nordlind1,2, Agneta Anderzén-Carlsson3, Ann-Sofie Sundqvist3
1School of Health Sciences, Faculty of Medicine and Health, Örebro University, Örebro, Sweden.
Insights
This study adapted and validated patient-reported experience measures (PREMs) for Swedish children. Six versions are now ready for pilot testing, ensuring better healthcare experiences for pediatric patients.
Area of Science:
- Pediatric healthcare research
- Patient experience measurement
- Health services research
Background:
- No validated, generic patient-reported experience measure (PREM) exists for children under 15 in Sweden.
- Previous studies indicate a lack of consensus on incorporating children's voices in pediatric healthcare.
- A need exists for validated questionnaires to assess pediatric patient experiences.
Purpose of the Study:
- To translate, adapt, and validate six versions of the Children's and Young People's PREM for the Swedish healthcare context.
- To ensure the questionnaire accurately captures the experiences of children receiving healthcare in Sweden.
- To provide a reliable tool for assessing pediatric patient experiences in Sweden.
Main Methods:
- Exploratory sequential mixed-method design.
- Cognitive interviews to evaluate children's understanding of the questionnaire.
- Content Validity Index (CVI) to assess questionnaire relevance and guide adjustments.
Main Results:
- Translation and adaptation identified issues with context, wording, and question structure in the Swedish setting.
- Cognitive interviews and CVI testing led to the removal of 3-10 questions per version.
- Six face- and content-validated Swedish versions of the questionnaire are now available for pilot testing.
Conclusions:
- The rigorous adaptation and validation process is crucial for ensuring the quality and applicability of PREMs across different healthcare contexts.
- The developed Swedish versions are ready for pilot testing, addressing the lack of validated instruments for pediatric patients in Sweden.
- This study highlights the importance of culturally adapting and validating instruments, even those originally developed with patient input, for international use.
Background:
There is no national, validated, generic patient-reported experience measure (PREM) for children under 15 years of age in Sweden. A recent cross-sectional study found no consensus in how children's voices are heard in paediatric health care, as well as a lack of validated questionnaires.
Aim:
The aim of this study is to translate, adapt and validate the six versions of the Children's and Young People's PREM for use in a Swedish health care context.
Design:
An exploratory sequential mixed-method design including cognitive interviews and content validity index (CVI) was used. The interviews focused on evaluating children's understanding of the questionnaire, and the CVI was used to further adjust the relevance of the questionnaire.
Participants:
A convenience sample of 62 children participated in the cognitive interviews and an additional convenience sample of 42 children was included in the CVI testing. The children, aged 8-16 years, were attending routine visits at paediatric departments in a county hospital and a children's hospital in the mid-Sweden region between October 2020 and June 2022.
Results:
The translation, adaptation and validation process identified several issues regarding the understanding of the questionnaire in a Swedish context. Adaptations were made based on issues related to context, wording and the structure of the questions. CVI testing resulted in the removal of 3-10 questions in each of the different versions of the questionnaire.
Conclusion:
The study has resulted in six face- and content-validated Swedish versions of the questionnaire ready for pilot testing. Although the versions of the original questionnaire were developed in collaboration with children in the United Kingdom, this did not mean that they could automatically be used in a Swedish health care context. This study confirms the importance of a rigorous process of adaptation and validation to ensure quality and applicability to children accessing health care in different countries.
Patient Or Public Contribution:
Children's views have guided the development of the original instrument and its adaptation to the Swedish health care context. Due to the strong patient involvement in the process of developing the Swedish versions of the questionnaire, the research group made a pragmatic decision to have no other patient contribution in the study.
