Is an adolescent with chronic kidney disease ready for the transition to an adult health service: translation and adaptation of questionnaires

Introduction. The issue of the readiness of adolescents with chronic kidney disease (CKD) for the transition to the adult service in the Russian healthcare system remains unexplored. One of the reasons of this problem is the lack of Russian tools for evaluating patient transition readiness.
The goal of this study is to develop Russian-language questionnaires to evaluate the readiness of adolescents for the transition to an adult health service based on the English-language originals.
Materials and methods. A literature search was carried out to identify English questionnaires, as well as recommendations for their translation and adaptation. Development of the Russian versions of the questionnaires included the following major stages: preparation, two forward translations, their reconciliation, adaptation and creation of an intermediate version, back-translation into English, cognitive interviewing of the adolescents, proofreading and approval of the final version by the authors of the original English questionnaires. Cognitive interviewing was performed with 10 adolescents with CKD aged 15–17 years.
Results. Four English questionnaires were identified. They were studied and comparatively analysed. Translated versions of these questionnaires into foreign languages were revealed. Two most promising questionnaires for translation into Russian were identified: UNC TRxANSITION Index and STARx. Russian versions of these questionnaires were developed based on the international recommendations. Cognitive interviewing provided additional adaptation and linguistic validation of the translated versions based on the adolescents’ opinions. UNC TRxANSITION Index is a provider-administered questionnaire and includes 32 questions. STARx is a self-report questionnaire and includes 18 questions.
Conclusions. Russian versions of questionnaires for evaluating adolescents’ transition readiness are available for use by health professionals and social workers. A further study of their psychometric properties and confirmation of the validity of their results in the context of the Russian healthcare system is required.

1. Kulakova E.N., Nastausheva T.L., Kondratjeva I.V., Zvyagina T.G., Koltakova M.P. Transition of Adolescents with Chronic Kidney Disease to Adult Health Service: Scoping Review. Current Pediatrics. 2021;20(1):38–50. (In Russ.) https://doi.org/10.15690/vsp.v20i1.2235.

2. Makovetskaya G.A., Mazur L.I., Kulikova N.I., Barinov V.N., Bazranova Yu.Yu. Improvement of nephrological care in a region, by monitoring of the incidence of childhood kidney diseases and their evolution. Current Pediatrics. 2011;(1):37–41. (In Russ.) Available at: https://elibrary.ru/item.asp?id=15595977.

3. Nikishina I.P., Kostareva O.M. Juvenile arthritis in pediatric and adult rheumatology service: the problem of continuity in the management of patients. Rheumatology Science and Practice. 2018;56(2):138–143. (In Russ.) Available at: https://rsp.mediar-press.net/rsp/article/view/2517.

4. Ganich E.G., Shchukina O.B., Gabrusskaya T.V., Gorbacheva D.Sh., Grigoryan V.V., Filippov D.V. Why a Formal Procedure Is Needed for Inflammatory Bowel Disease Patients Transitioning from Pediatric to Adult Care. Doktor.Ru. 2017;(12):36–40. (In Russ.) Available at: https://journaldoctor.ru/upload/iblock/b3b/6.pdf.

5. Schwartz L.A., Daniel L.C., Brumley L.D., Barakat L.P., Wesley K.M., Tuchman L.K. Measures of readiness to transition to adult health care for youth with chronic physical health conditions: a systematic review and recommendations for measurement testing and development. J Pediatr Psychol. 2014;39(6):588–601. https://doi.org/10.1093/jpepsy/jsu028.

6. Zhang L.F., Ho J.S.W., Kennedy S.E. a systematic review of the psychometric properties of transition readiness assessment tools in adolescents with chronic disease. BMC Pediatr. 2014;14(1):1–10. https://doi.org/10.1186/1471-2431-14-4.

7. Kulakova E.N., Nastausheva T.L. Quality improvement methodology: the basics of the theory and features of its application in clinical practice. Health Care Standardization Problems. 2017;(11–12):10–16. (In Russ.) http://doi.org/10.26347/1607-2502201711-12010-016.

8. Transition to Adulthood for Youth With Chronic Conditions and Special Health Care Needs. J Adolesc Heal. 2020;66(5):631–634. https://doi.org/10.1016/j.jadohealth.2020.02.006.

9. Willis G.B. Cognitive Interviewing and Questionnaire Design: a Training Manual. Cognitive Methods Staff. Working Paper Series, No. 7. U.S. Department of Health and Human Services; 1994. 56 p. Available at: https://www.worldcat.org/title/cognitive-interviewing-and-questionnairedesign-a-training-manual/oclc/40438992.

10. Willis G.B. Analysis of the Cognitive Interview in Questionnaire Design: Understanding Qualitative Research. Oxford: Oxford University Press; 2015. 274 p. Available at: https://global.oup.com/academic/product/analysis-ofthe-cognitive-interview-in-questionnaire-design-9780199957750?cc=us&lang=en&.

11. Tse E.T.Y., Lam C.L.K., Wong C.K.H., Chin W.Y., Etz R.S., Zyzanski S.J., Stange K.C. Cultural adaptation and content validity of a Chinese translation of the “Person-Centered Primary Care Measure”: Findings from cognitive debriefing. Fam Med Community Heal. 2020;8(4):e000621. https://doi.org/10.1136/fmch-2020-000621.

12. Ferris M.E., Harward D.H., Bickford K., Layton J.B., Ferris M.T., Hogan S.L. et al. a clinical tool to measure the components of health-care transition from pediatric care to adult care: The UNC TRxANSITION scale. Ren Fail. 2012;34(6):744–753. https://doi.org/10.3109/0886022X.2012.678171.

13. Gilleland J., Amaral S., Mee L., Blount R. Getting ready to leave: Transition readiness in adolescent kidney transplant recipients. J Pediatr Psychol. 2012;37(1):85-96. https://doi.org/10.1093/jpepsy/jsr049.

14. Gilleland Marchak J., Reed-Knight B., Amaral S., Mee L., Blount R.L. Providers’ assessment of transition readiness among adolescent and young adult kidney transplant recipients. Pediatr Transplant. 2015;19(8):849–857. https://doi.org/10.1111/petr.12615.

15. Wood D.L., Sawicki G.S., Miller M.D., Smotherman C., Lukens-Bull K., Livingood W.C. et al. The Transition Readiness Assessment Questionnaire (TRAQ): Its factor structure, reliability, and validity. Acad Pediatr. 2014;14(4):415–422. https://doi.org/10.1016/j.acap.2014.03.008.

16. Ferris M., Cohen S., Haberman C., Javalkar K., Massengill S., Mahan J.D. et al. Self-Management and Transition Readiness Assessment: Development, Reliability, and Factor Structure of the STARx Questionnaire. J Pediatr Nurs. 2015;30(5):691–699. https://doi.org/10.1016/j.pedn.2015.05.009.

17. Nazareth M., Hart L., Ferris M., Rak E., Hooper S., van Tilburg M.A.L. a Parental Report of Youth Transition Readiness: The Parent STARx Questionnaire (STARx-P) and Re-evaluation of the STARx Child Report. J Pediatr Nurs. 2018;38:122–126. https://doi.org/10.1016/j.pedn.2017.08.033.

18. Cantú-Quintanilla G., Ferris M., Otero A., Gutiérrez-Almaraz A., ValverdeRosas S., Velázquez-Jones L. et al. Validation of the UNC TRxANSITION ScaleTMVersion 3 Among Mexican Adolescents With Chronic Kidney Disease. J Pediatr Nurs. 2015;30(5):e71-e81. https://doi.org/10.1016/j.pedn.2015.06.011.

19. Sato Y., Ochiai R., Ishizaki Y., Nishida T., Miura K., Taki A. et al. Validation of the Japanese Transition Readiness Assessment Questionnaire. Pediatr Int. 2020;62(2):221–228. https://doi.org/10.1111/ped.14086.

20. Culen C., Herle M., König M., Hemberger S.-H., Seferagic S., Talaska C. et al. Be on TRAQ – Cross-cultural adaptation of the Transition Readiness Assessment Questionnaire (TRAQ 5.0) and pilot testing of the German Version (TRAQ-GV-15). J Transit Med. 2019;1(1). https://doi.org/10.1515/jtm-2018-0005.

21. De Cunto C.L., Eymann A., Britos M.D.L.Á., González F., Roizen M., Celin M.D.L.M.R., Guppy E.S. Cross-cultural adaptation of the Transition Readiness Assessment Questionnaire to Argentinian Spanish. Arch Argent Pediatr. 2017;115(2):181–186. https://doi.org/10.5546/aap.2017.eng.181.

22. Anelli C.G., Len C.A., Terreri M.T.R.A., Russo G.C.S., Reiff A.O. Translation and validation of the Transition Readiness Assessment Questionnaire (TRAQ). J Pediatr (Versão em Português). 2019;95(2):180–187. https://doi.org/10.1016/j.jpedp.2018.03.011.

23. Kiziler E., Yildiz D., Eren Fidanci B. Validation of transition readiness assessment questionaire in Turkish adolescents with diabetes. Balkan Med J. 2018;35(1):93–100. https://doi.org/10.4274/balkanmedj.2016.1415.

24. Kim G., Choi E.K., Kim H.S., Kim H., Kim H.S. Healthcare Transition Readiness, Family Support, and Self-management Competency in Korean Emerging Adults with Type 1 Diabetes Mellitus. J Pediatr Nurs. 2019;48:e1-e7. https://doi.org/10.1016/j.pedn.2019.03.012.

25. Chong D.L.S., Azim E., Latiff Z., Zakaria S.Z.S., Wong S.W., Wu L.L. et al. Transition care readiness among patients in a tertiary paediatric department. Med J Malaysia. 2018;73(6):382–387. Available at: http://mail.e-mjm.org/2018/v73n6/transition-care-readiness.pdf.

26. Parfeniuk S., Petrovic K., MacIsaac P.L., Cook K.A., Rempel G.R. Transition readiness measures for adolescents and young adults with chronic health conditions: a systematic review. J Transit Med. 2020;2(1). https://doi.org/10.1515/jtm-2020-0020.

27. Watson A.R., Harden P., Ferris M., Kerr P.G., Mahan J., Ramzy M.F. Transition from pediatric to adult renal services: a consensus statement by the International Society of Nephrology (ISN) and the International Pediatric Nephrology Association (IPNA). Pediatr Nephrol. 2011;26(10):1953–1957. https://doi.org/10.1007/s00467-011-1981-z.

28. Sousa V.D., Rojjanasrirat W. Translation, adaptation and validation of instruments or scales for use in cross-cultural health care research: a clear and user-friendly guideline. J Eval Clin Pract. 2011;17(2):268–274. https://doi.org/10.1111/j.1365-2753.2010.01434.x.

29. Beaton D.E., Bombardier C., Guillemin F., Ferraz M.B. Guidelines for the process of cross-cultural adaptation of self-report measures. Spine. 2000;25(24): 3186–3191. https://doi.org/10.1097/00007632-200012150-00014.

30. Wild D., Grove A., Martin M., Eremenco S., McElroy S., Verjee-Lorenz A., Erikson P. Principles of good practice for the translation and cultural adaptation process for patient-reported outcomes (PRO) measures: Report of the ISPOR Task Force for Translation and Cultural Adaptation. Value Heal. 2005;8(2):94–104. https://doi.org/10.1111/j.1524-4733.2005.04054.x.

31. Gjersing L., Caplehorn J.R., Clausen T. Cross-cultural adaptation of research instruments: Language, setting, time and statistical considerations. BMC Med Res Methodol. 2010;10(1):1–10. https://doi.org/10.1186/1471-2288-10-13.

32. Ionova T.I., Nikitina T.P., Mayevskaya E.A., Cheremushkina N.V., Shaburov R.I., Kucheryavyy Yu.A., Maev I.V. Development of the Russian version of quality of life questionnaire in patients with GERD – GERD-HRQL. Terapevticheskii arkhiv. 2020;92(8):12–17. (In Russ.) https://doi.org/10.26442/00403660.2020.08.000658.

33. Lazarenko V.A., Antonov A.E., Kidakoev R.-G., Smith J.J., Silina L.V. Validation of the Charing Cross Venous Ulceration Questionnaire in Russia. Flebologiya. 2018;12(4):280–283. (In Russ.) https://doi.org/10.17116/flebo201812041280.

34. Eremenco S., Pease S., Mann S., Berry P. Patient-reported outcome (PRO) consortium translation process: Consensus development of updated best practices. J Patient¬Reported Outcomes. 2018;2(1):1–11. https://doi.org/10.1186/s41687-018-0037-6.

35. Ionova T.I. Principles of linguistic and cultural adaptation of quality of life questionnaires. Bulletin of the Multinational Centеr of Quality of Life Research. 2018;(31–32):12–17. (In Russ.) Available at: http://www.qualitylife.ru/1810.php.

36. Kulakova E.N., Nastausheva T.L., Savchenko A.P., Zvyagina T.G. Readiness to transition to adult healthcare services among adolescents with chronic kidney disease. Clinical Practice in Pediatrics. 2021;16(3):62–70. (In Russ.) https://10.20953/1817-7646-2021-3-62-70.

37. Novik A.A., Ionova T.I. The study of quality of life in clinical medicine. Bulletin of Pirogov National Medical & Surgical Center. 2006;1(1):91–99. (In Russ.) Available at: https://www.pirogov-vestnik.ru/upload/uf/152/magazine_2006_1.pdf.

38. Kur’yaninova V.A., Stoyan M.V., Zakharova I.N., Klimov L.Ya., Kashnikov V.S., Atanesyan R.A. et al. Effectiveness of nutritional supplementation for children with coeliac disease who are on a gluten-free diet. Meditsinskiy Sovet. 2019;(17):138–146. (In Russ.) https://doi.org/10.21518/2079-701X-2019-17-138-146.

39. Straus E.J. Challenges in measuring healthcare transition readiness: Taking stock and looking forward. J Pediatr Nurs. 2019;46:109–117. https://doi.org/10.1016/j.pedn.2019.03.016.

40. Johnson K., McBee M., Reiss J., Livingood W., Wood D. TRAQ changes: Improving the measurement of transition readiness by the Transition Readiness Assessment Questionnaire. J Pediatr Nurs. 2021;59:188–195. https://doi.org/10.1016/j.pedn.2021.04.019.