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Health and Quality of Life Outcomes

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Open Access 01-12-2024 | Dyspnea | Research

Translation and cross-cultural adaptation of an Arabic version of PROMIS® of dyspnea activity motivation, requirement item pool and sleep-related impairments item bank

Authors: Monira I. Aldhahi, Hadeel R. Bakhsh, Bodor H. Bin Sheeha, Rehab Alhasani

Published in: Health and Quality of Life Outcomes | Issue 1/2024

Abstract

Background

Patient-Reported Outcomes Measurement Information System (PROMIS®) Dyspnea Activity Motivation & Requirement item pool and sleep related impairments (SRI) item bank are designed in assessing the impact of dyspnea and sleep and guiding patient management. However, to effectively utilize this tool in Arabic-speaking populations, it is essential to perform a thorough translation and cultural adaptation process. Therefore, the aim of the study is to translate and cross-culturally adapt the translated items of the PROMIS® dyspnea activity motivation and requirement and SRI into Arabic.

Methods

A universal approach to translation adopted from PROMIS guideline document for translation and cultural adaptation, and the Chronic Illness Therapy translation methodology. The forward translation step followed by back work translation and Harmonization and quality assurance. Cognitive interview and pilot testing was conducted among 30 Arabic respondents across 5 different countries of Arabic speaker to produce a single version for Arab countries.

Results

A successful translation and cross-cultural adaptation into Arabic was achieved while maintaining equivalency. The translation was clear and more colloquial sentences were semantically equivalent and easy to understand. Equivalence of meaning of PROMIS® dyspnea activity motivation, requirement and SRI were achieved. All items were appropriate, relevant to culture and it measured the same concept as the original items. In Items 2 of the dyspnea activity motivation related to leisure activity “shopping”, the term “catalog and website” was added instead of “catalog only” which makes item in line with the original source but more comprehensive and applicable to current shopping trends.

Conclusions

The PROMIS® dyspnea activity motivation, requirement items pool and SRI item bank are culturally and linguistically suitable to be used in Arab country. By extending the accessibility of this measure to Arabic-speaking population, this study contributes significantly to the advancement of management and patient-centered care in the region. Further studies are necessary to evaluate the psychometric properties of these instruments.

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Deshpande PR, Rajan S, Sudeepthi BL, Nazir CA. Patient-reported outcomes: a new era in clinical research. Perspect Clin Res. 2011;2:137. https://doi.org/10.4103/2229-3485.86879.CrossRefPubMedPubMedCentral

Field J, Holmes MM, Newell D. PROMs data: can it be used to make decisions for individual patients? A narrative review. PROM. 2019;10:233–41. https://doi.org/10.2147/PROM.S156291.CrossRefPubMedPubMedCentral

Hammert WC, Calfee RP. Understanding PROMIS. The Journal of Hand Surgery. 2020;45:650–4. https://doi.org/10.1016/j.jhsa.2020.03.016.CrossRefPubMed

Cella D, Choi SW, Condon DM, et al. PROMIS® adult health profiles: efficient short-form measures of seven health domains. Value in health. 2019;22:537–44. https://doi.org/10.1016/j.jval.2019.02.004.CrossRefPubMedPubMedCentral

Schwartzstein RM, Sturley R. dyspnea and mechanical ventilation: applying physiology to guide therapy. Trans Am Clin Climatol Assoc. 2023;133:162.PubMedPubMedCentral

Hayen A, Herigstad M, Pattinson KT. Understanding dyspnea as a complex individual experience. Maturitas. 2013;76:45–50. https://doi.org/10.1016/j.maturitas.2013.06.005.CrossRefPubMed

de Silva CFR, Pegorari MS, Matos AP, Ohara DG. Dyspnea is associated with poor physical performance among community-dwelling older adults: a population-based cross-sectional study. Sao Paulo Med J. 2020;138:112–7. https://doi.org/10.1590/1516-3180.2019.0428.R1.09122019.CrossRefPubMedPubMedCentral

Hanania NA, O’Donnell DE. Activity-related dyspnea in chronic obstructive pulmonary disease: physical and psychological consequences, unmet needs, and future directions. COPD. 2019;14:1127–38. https://doi.org/10.2147/COPD.S188141.CrossRef

Almeneessier AS, BaHammam AS. Sleep medicine and sleep disorders in Saudi Arabia and the Arab world. In: Handbook of healthcare in the Arab World. New York: Springer; 2021. p. 1693–1707.

10.

Orešković D, Raguž M, Derke F. Disrupted sleep and brain functioning. In: Demarin V, Battistin L, Budinčević H, editors. Mind, brain and education. Cham: Springer International Publishing; 2023. p. 27–37.CrossRef

11.

Qanash S, Alwafi H, Barasheed S, et al. Impact of night shifts on sleeping patterns, psychosocial and physical well-being among healthcare professionals: a cross-sectional study in a tertiary hospital in Saudi Arabia. BMJ Open. 2021;11:e046036. https://doi.org/10.1136/bmjopen-2020-046036.CrossRefPubMedPubMedCentral

12.

Li JC, Fishbein A, Singam V, et al. Sleep disturbance and sleep-related impairment in adults with atopic dermatitis: a cross-sectional study. Dermatitis. 2018;29:270–7. https://doi.org/10.1097/DER.0000000000000401.CrossRefPubMedPubMedCentral

13.

Terwee CB, Van Litsenburg RRL, Elsman EBM, Roorda LD. Psychometric properties and reference values of the Patient-Reported Outcomes Measurement Information System ( PROMIS) sleep item banks in the Dutch general population. J Sleep Res. 2023;32:e13753. https://doi.org/10.1111/jsr.13753.CrossRefPubMed

14.

Yu L, Buysse DJ, Germain A, et al. Development of short forms from the PROMIS™ sleep disturbance and sleep-related impairment item banks. Behav Sleep Med. 2012;10:6–24. https://doi.org/10.1080/15402002.2012.636266.CrossRef

15.

Choi SW, Victorson DE, Yount S, et al. Development of a conceptual framework and calibrated item banks to measure patient-reported dyspnea severity and related functional limitations. Value Health. 2011;14:291–306. https://doi.org/10.1016/j.jval.2010.06.001.CrossRefPubMed

16.

Alaqeel S, Alfakhri A, Alkherb Z, Almeshal N. Patient-reported outcome measures in Arabic-speaking populations: a systematic review. Qual Life Res. 2022;31:1309–20. https://doi.org/10.1007/s11136-021-03010-0.CrossRefPubMed

17.

Wild D, Grove A, Martin M, et al. 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 in health. 2005;8:94–104. https://doi.org/10.1111/j.1524-4733.2005.04054.x.CrossRefPubMed

18.

Epstein J, Santo RM, Guillemin F. A review of guidelines for cross-cultural adaptation of questionnaires could not bring out a consensus. J Clin Epidemiol. 2015;68:435–41. https://doi.org/10.1016/j.jclinepi.2014.11.021.CrossRefPubMed

19.

Eremenco SL, Cella D, Arnold BJ. A comprehensive method for the translation and cross-cultural validation of health status questionnaires. Eval Health Prof. 2005;28:212–32. https://doi.org/10.1177/0163278705275342.CrossRefPubMed

20.

Williams MT, Lewthwaite H, Paquet C, et al. Dyspnoea-12 and multidimensional dyspnea profile: systematic review of use and properties. J Pain Symptom Manage. 2022;63:e75–87. https://doi.org/10.1016/j.jpainsymman.2021.06.023.CrossRefPubMed

21.

Wuttge DM, Chaplin JE, Sandqvist G. Validation of the Swedish version of PROMIS-29v2 and FACIT-Dyspnea Index in patients with systemic sclerosis. Disabil Rehabil. 2023;45:2517–25. https://doi.org/10.1080/09638288.2022.2096124.CrossRefPubMed

22.

Van Kooten JAMC, Van Litsenburg RRL, Yoder WR, et al. Validation of the PROMIS sleep disturbance and sleep-related impairment item banks in Dutch adolescents. Qual Life Res. 2018;27:1911–20. https://doi.org/10.1007/s11136-018-1856-x.CrossRefPubMedPubMedCentral

23.

Jones J, Nielson SA, Trout J, et al. A validation study of PROMIS sleep disturbance (PROMIS-SD) and sleep related impairment (PROMIS-SRI) item banks in individuals with idiopathic Parkinson’s disease and matched controls. J Parkinson’s Dis. 2021;11:877–83. https://doi.org/10.3233/JPD-202429.CrossRef

24.

Van Kooten JAMC, Terwee CB, Luijten MAJ, et al. Psychometric properties of the patient-reported outcomes measurement information system (PROMIS) sleep disturbance and sleep-related impairment item banks in adolescents. J Sleep Res. 2021;30:e13029. https://doi.org/10.1111/jsr.13029.CrossRefPubMed

25.

Al-Ebrahim SQ, Harrison J, Chen TF, Mohammed MA. Cross-cultural adaptation and psychometric properties of patient-reported outcome measures in Arabic speaking countries: a scoping review. Res Social Adm Pharm. 2023;19:989–1006. https://doi.org/10.1016/j.sapharm.2023.03.007.CrossRefPubMed

26.

Terwee CB, Prinsen C, Chiarotto A, et al. COSMIN methodology for assessing the content validity of PROMs–user manual. Qual Life Res. 2018:27159–1170. https://doi.org/10.1007/s11136-018-1829-0.

Title: Translation and cross-cultural adaptation of an Arabic version of PROMIS® of dyspnea activity motivation, requirement item pool and sleep-related impairments item bank
Authors: Monira I. Aldhahi
Hadeel R. Bakhsh
Bodor H. Bin Sheeha
Rehab Alhasani
Publication date: 01-12-2024
Publisher: BioMed Central
Keywords: Dyspnea
Dyspnea
Published in: Health and Quality of Life Outcomes / Issue 1/2024
Electronic ISSN: 1477-7525
DOI: https://doi.org/10.1186/s12955-023-02223-w

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Translation and cross-cultural adaptation of an Arabic version of PROMIS® of dyspnea activity motivation, requirement item pool and sleep-related impairments item bank

Abstract

Background

Methods

Results

Conclusions

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Background

Methods

Results

Conclusions

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