Validation of a cross-NTD toolkit for assessment of NTD-related morbidity and disability. A cross-cultural qualitative validation of study instruments in Colombia

Autoři: Janneke Fischer aff001;  Benita Jansen aff001;  Alberto Rivera aff003;  Libardo J. Gómez aff003;  Martha C. Barbosa aff003;  Jorge L. Bilbao aff002;  José M. González aff002;  Luis Restrepo aff002;  Yesenia Vidal aff002;  Ruth M. H. Peters aff001;  Wim H. van Brakel aff004
Působiště autorů: Athena Institute, Faculty of Science, VU University Amsterdam, Amsterdam, Netherlands aff001;  Facultad Ciencias de la Salud, Universidad Metropolitana, Barranquilla, Colombia aff002;  America de Sur, DAHW Deutsche Lepra- und Tuberkulosehilfe, Bogota, Colombia aff003;  NLR, Amsterdam, Netherlands aff004
Vyšlo v časopise: PLoS ONE 14(12)
Kategorie: Research Article
prolekare.web.journal.doi_sk: 10.1371/journal.pone.0223042



Many neglected tropical diseases (NTDs) are not fatal, but they are disabling, disfiguring and stigmatizing. More accurate data on these aspects would benefit planning, monitoring and evaluation of interventions, as well as provision of appropriate services for the often life-long consequences. In 2015, a cross-NTD toolkit was developed, consisting of a variety of existing questionnaires to measure morbidity, disability and health-related quality of life. The toolkit covers the domains of the International Classification of Functioning, Disability and Health (ICF) framework. These tools have been developed in a source country, however, it was intended for the cross-NTD toolkit to be applicable across NTDs in many countries with different cultures and languages in order to generate universally comparative data. Therefore; the present study aimed to validate several tools of the toolkit among people affected by leprosy or leishmaniasis in the cultural settings of Cartagena and Cúcuta, Colombia.


This study aimed to validate the following tools among 55 participants between 18–85 years old, affected by leprosy and leishmaniasis: (I) Clinical Profile, (II) Self-Reporting Questionnaire (SRQ), (III) WHO Quality of Life assessment-abbreviated version (WHOQOL-BREF), and (IV) WHO Quality of Life assessment-Disability (WHOQOL-DIS). The tools were administered during face-to-face interviews and were followed by open questions about the respondents’ thoughts on format of the tool and the understanding, relevance and acceptability of the items. The tools were validated using a qualitative method approach based on the framework for cultural equivalence, measured by the cultural, item, semantic and operational equivalences.


The Clinical Profile was seen as acceptable and relevant, only the semantic equivalence was not as satisfying and needs a few adaptations. The SRQ was very well understood and shows to reach the equivalences for the population of Colombia without any additional changes. Several items of the WHOQOL-BREF and the WHOQOL-DIS were not well understood and changes are recommended due to semantic difficulties. Operational equivalence of both questionnaires was not as desired in relation to the used response scales. The participants shared that the tools are relevant and important for their particular situation.


The SRQ is found to be a valid tool for Colombia and can be included in the cross-NTD toolkit. The Clinical Profile, WHOQOL-BREF & WHOQOL-DIS need changes and retesting among Colombian people affected by an NTD. The toolkit as a whole is seen as useful to show the effects leprosy and leishmaniasis have on the participants. This cultural validation will contribute to a universally applicable cross-NTD toolkit.

Klíčová slova:

Colombia – Culture – Leishmaniasis – Leprosy – Neglected tropical diseases – Quality of life – Questionnaires – Semantics


1. Mantilla B. The invisible plagues: a conceptual model of the neglect of neglected tropical diseases. Social Medicine. 2011;6(2):118–27.

2. World Health Organization. Neglected Tropical Diseases: Hidden Successes, Emerging Opportunities (Geneva: WHO, 2006)., accessed on January. 2008;29.

3. World Health Organization. Working to overcome the global impact of neglected tropical diseases. Geneva; 2010.

4. World Health Organisation. Investing to overcome the burden of neglected tropical diseases. Geneva: World Health Organization; 2015.

5. World Health Organization. Neglected tropical diseases: Ashok Moloo; 2017 [updated 2017.

6. Hotez PJ, Molyneux DH, Fenwick A, Ottesen E, Sachs SE, Sachs JD. Incorporating a rapid-impact package for neglected tropical diseases with programs for HIV/AIDS, tuberculosis, and malaria. PLoS Med. 2006;3(5):e102. doi: 10.1371/journal.pmed.0030102 16435908

7. Molyneux DH, Hotez PJ, Fenwick A. “Rapid-impact interventions”: how a policy of integrated control for Africa’s neglected tropical diseases could benefit the poor. PLoS Med. 2005;2(11):e336. doi: 10.1371/journal.pmed.0020336 16212468

8. Kennedy PG. The continuing problem of human African trypanosomiasis (sleeping sickness). Annals of neurology. 2008;64(2):116–26. doi: 10.1002/ana.21429 18756506

9. Wilder-Smith EP, Van Brakel WH. Nerve damage in leprosy and its management. Nature Clinical Practice Neurology. 2008;4(12):656–63. doi: 10.1038/ncpneuro0941 19002133

10. Madans JH, Loeb ME, Altman BM. Measuring disability and monitoring the UN Convention on the Rights of Persons with Disabilities: the work of the Washington Group on Disability Statistics. BMC public health. 2011;11(4):1.

11. Perenboom RJ, Chorus AM. Measuring participation according to the International Classification of Functioning, Disability and Health (ICF). Disability and rehabilitation. 2003;25(11–12):577–87. doi: 10.1080/0963828031000137081 12959331

12. Van Brakel WH, Officer A. Approaches and tools for measuring disability in low and middle-income countries. Lepr Rev. 2008;79(1):50–64. 18540237

13. Van Brakel WH. Measuring health-related stigma—a literature review. Psychology, health & medicine. 2006;11(3):307–34.

14. Murray CJ. Quantifying the burden of disease: the technical basis for disability-adjusted life years. Bulletin of the World health Organization. 1994;72(3):429. 8062401

15. World Bank. World Development Report 1993: Investing in Health.; 1993.

16. Mieras LF, Anand S, van Brakel WH, Hamilton HC, Kollmann KM, Mackenzie C, et al. Neglected Tropical Diseases, Cross-Cutting Issues Workshop, 4–6 February 2015, Utrecht, the Netherlands: meeting report. International health. 2016;8(suppl 1):i7–i11.

17. Mont D. Measuring disability prevalence. World Bank Social Protection Discussion Paper. 2007;706.

18. van‘t Noordende AT, Kuiper H, Ramos AN, Mieras LF, Barbosa JC, Pessoa SM, et al. Towards a toolkit for cross-neglected tropical disease morbidity and disability assessment. International health. 2016;8(suppl 1):i71–i81.

19. Fox-Rushby JA, Kaddar M, Levine R, Brenzel L. The economics of vaccination in low-and middle-income countries. SciELO Public Health; 2004.

20. Peters RM, Van Brakel WH, Zweekhorst MB, Damayanti R, Bunders JF. The cultural validation of two scales to assess social stigma in leprosy. PLoS Negl Trop Dis. 2014;8(11):e3274. doi: 10.1371/journal.pntd.0003274 25376007

21. Terwee CB, Bot SD, de Boer MR, van der Windt DA, Knol DL, Dekker J, et al. Quality criteria were proposed for measurement properties of health status questionnaires. Journal of clinical epidemiology. 2007;60(1):34–42. doi: 10.1016/j.jclinepi.2006.03.012 17161752

22. Herdman M, Fox-Rushby J, Badia X. ‘Equivalence’and the translation and adaptation of health-related quality of life questionnaires. Quality of Life Research. 1997;6(3):0-.

23. Herdman M, Fox-Rushby J, Badia X. A model of equivalence in the cultural adaptation of HRQoL instruments: the universalist approach. Quality of life Research. 1998;7(4):323–35. 9610216

24. Harding TW, De Arango V, Baltazar J, Climent CE, Ibrahim H, Ladrido-Ignacio L, et al. Mental disorders in primary health care: a study of their frequency and diagnosis in four developing countries. Psychological medicine. 1980;10(2):231–41. doi: 10.1017/s0033291700043993 7384326

25. Whoqol Group. Development of the World Health Organization WHOQOL-BREF quality of life assessment. Psychological medicine. 1998;28(3):551–8. doi: 10.1017/s0033291798006667 9626712

26. Power M, Green A. Development of the WHOQOL disabilities module. Quality of Life Research. 2010;19(4):571–84. doi: 10.1007/s11136-010-9616-6 20217246

27. Mason M, editor Sample size and saturation in PhD studies using qualitative interviews. Forum qualitative Sozialforschung/Forum: qualitative social research; 2010.

28. Clinical Profile questionnaire: Leprastichting; [

29. SRQ questionnaire [

30. World Health Organization. A User’s guide to the self reporting questionnaire (SRQ / compiled by M. Beusenberg and J. Orley: Geneva: WHO; 1994 [

31. Araya R, Wynn R, Lewis G. Comparison of two self administered psychiatric questionnaires (GHQ-12 and SRQ-20) in primary care in Chile. Social Psychiatry and Psychiatric Epidemiology. 1992;27(4):168–73. doi: 10.1007/bf00789001 1411744

32. Harpham T, Snoxell S, Grant E, Rodriguez C. Common mental disorders in a young urban population in Colombia. The British Journal of Psychiatry. 2005;187(2):161–7.

33. Gómez-Restrepo C, Rincón CJ, Urrego-Mendoza Z. Mental health, emotional suffering, mental problems and disorders in Indigenous Colombians. Data from the National Mental Health Survey 2015. Revista colombiana de psiquiatria. 2016;45:119–26. doi: 10.1016/j.rcp.2016.09.005 27993246

34. Tamayo MN, Rincón RC, de Santacruz C, Bautista BN, Collazos J, Gómez-Restrepo C. Mental problems, mood and anxiety disorders in the population displaced by violence in Colombia; results of the National Mental Health Survey 2015. Revista colombiana de psiquiatria. 2016;45:113–8. doi: 10.1016/j.rcp.2016.09.004 27993245

35. Quitian H, Ruiz-Gaviria R, Gómez-Restrepo C, Rondón M. Poverty and Mental Disorders in the Colombian Population: National Mental Health Survey 2015. Revista colombiana de psiquiatria. 2016;45:31–8. doi: 10.1016/j.rcp.2016.02.005 27993254

36. World Health Organization. WHOQOL: measuring quality of life. 1997.

37. The Whoqol Group. The World Health Organization quality of life assessment (WHOQOL): development and general psychometric properties. Social science & medicine. 1998;46(12):1569–85.

38. WHOQOL-BREF questionnaire [

39. Saxena S, Carlson D, Billington R, Orley J. The WHO quality of life assessment instrument (WHOQOL-Bref): the importance of its items for cross-cultural research. Quality of life Research. 2001;10(8):711–21. doi: 10.1023/a:1013867826835 11871592

40. Benitez-Borrego S, Guardia-Olmos J, Urzúa-Morales A. Factorial structural analysis of the Spanish version of WHOQOL-BREF: an exploratory structural equation model study. Quality of Life Research. 2014;23(8):2205–12. doi: 10.1007/s11136-014-0663-2 24609387

41. Salazar-Maya ÁM, Hoyos-Duque TN, Bojanini-Acevedo L. Perception of quality of life of a group of individuals subjected to bariatric surgery. Investigación y Educación en Enfermería. 2014;32(1):22–32. doi: 10.17533/udea.iee.v32n1a03 25229900

42. Cardona-Arias J, Peláez-Vanegas L, López-Saldarriaga J, Duque-Molina M, Leal-Álvarez Ó. Health related quality of life in adults with HIV/AIDS in Colombia. Biomedica. 2011;31(4):532–44. 22674364

43. Salas Zapata C, Grisales Romero H. Quality of life and associated factors in women with breast cancer in Antioquia, Colombia. Revista Panamericana de Salud Pública. 2010;28(1):9–18. 20857015

44. Lucas-Carrasco R, Pascual-Sedano B, Galán I, Kulisevsky J, Sastre-Garriga J, Gomez-Benito J. Using the WHOQOL-DIS to measure quality of life in persons with physical disabilities caused by neurodegenerative disorders. Neurodegenerative Diseases. 2010;8(4):178–86. doi: 10.1159/000321582 21135535

45. WHOQOL-DIS questionnaire [

46. Gjersing L, Caplehorn JR, Clausen T. Cross-cultural adaptation of research instruments: language, setting, time and statistical considerations. BMC medical research methodology. 2010;10(1):1.

47. Goursand D, Paiva SM, Zarzar PM, Ramos-Jorge ML, Cornacchia GM, Pordeus IA, et al. Cross-cultural adaptation of the Child Perceptions Questionnaire 11–14 (CPQ 11–14) for the Brazilian Portuguese language. Health and quality of life outcomes. 2008;6(1):1.

48. Moraes CL, Reichenheim ME. Cross-cultural measurement equivalence of the Revised Conflict Tactics Scales (CTS2) Portuguese version used to identify violence within couples. Cadernos de Saúde Pública. 2002;18(3):783–96. 12048604

49. Stevelink S, van Brakel W. The cross-cultural equivalence of participation instruments: a systematic review. Disability and rehabilitation. 2013;35(15):1256–68. doi: 10.3109/09638288.2012.731132 23789790

50. Hak T, Willems D, van der Wal G, Visser F. A qualitative validation of the Minnesota Living with Heart Failure Questionnaire. Quality of Life Research. 2004;13(2):417–26. doi: 10.1023/B:QURE.0000018487.35591.6e 15085914

51. Sartorius N. Cross-cultural psychiatry. Psychiatrie der Gegenwart. 1979;1:711–37.

52. Mallinson S. Listening to respondents:: a qualitative assessment of the Short-Form 36 Health Status Questionnaire. Social Science & Medicine. 2002;54(1):11–21.

53. Esposito JL, Rothgeb JM. Evaluating survey data: Making the transition from pretesting to quality assessment. Survey measurement and process quality. 1997:541–71.

54. Lima BR, Pai S, Lozano J, Santacrutz H. The stability of emotional symptoms among disaster victims in a developing country. Journal of Traumatic Stress. 1990;3(4):497–505.

55. Lima BR, Pai S, Santacruz H, Lozano J, Luna J. Screening for the psychological consequences of a major disaster in a developing country: Armero, Colombia. Acta Psychiatrica Scandinavica. 1987;76(5):561–7. doi: 10.1111/j.1600-0447.1987.tb02919.x 3434328

56. Puertas G, Ríos C, Valle HD. Prevalencia de trastornos mentales comunes en barrios marginales urbanos con población desplazada en Colombia. 2006.

57. Cardona-Arias J. Calidad de vida relacionada con la salud en personas con VIH/SIDA: Comparación del MOSSF-36, WHOQOL-BREF y WHOQOL-HIV-BREF, Medellín, Colombia, 2009. Colombia Médica. 2011;42(4).

58. Correa-Montoya L. & Castro-Martínez M. C. Disability and social inclusion in Colombia. Bogotá D.C.–Colombia: Saldarriaga-Concha Foundation; 2016.

59. Arango Restrepo JF. Disability, Living Conditions and Quality of Life-The case of the Municipality of Anapoima in rural Colombia 2015.

60. Smith WCS, Nicholls PG, Das L, Barkataki P, Suneetha S, Suneetha L, et al. Predicting neuropathy and reactions in leprosy at diagnosis and before incident events—results from the INFIR cohort study. PLoS neglected tropical diseases. 2009;3(8):e500. doi: 10.1371/journal.pntd.0000500 19668358

61. Lasry-Levy E, Hietaharju A, Pai V, Ganapati R, Rice AS, Haanpää M, et al. Neuropathic pain and psychological morbidity in patients with treated leprosy: a cross-sectional prevalence study in Mumbai. PLoS neglected tropical diseases. 2011;5(3):e981. doi: 10.1371/journal.pntd.0000981 21408111

62. van der Westhuizen C, Wyatt G, Williams JK, Stein DJ, Sorsdahl K. Validation of the self reporting questionnaire 20-item (SRQ-20) for use in a low-and middle-income country emergency centre setting. International journal of mental health and addiction. 2016;14(1):37–48. doi: 10.1007/s11469-015-9566-x 26957953

63. Husain N, Chaudhry N, Rhouma A, Sumra A, Tomenson B, Waheed W. Validation of the self-reporting questionnaire (SRQ 20) in British Pakistani and White European population in the United Kingdom. Journal of affective disorders. 2016;189:392–6. doi: 10.1016/j.jad.2015.08.068 26499820

64. Rasmussen A, Ventevogel P, Sancilio A, Eggerman M, Panter-Brick C. Comparing the validity of the self reporting questionnaire and the Afghan symptom checklist: dysphoria, aggression, and gender in transcultural assessment of mental health. BMC psychiatry. 2014;14(1):206.

65. Ali G-C, Ryan G, De Silva MJ. Validated screening tools for common mental disorders in low and middle income countries: a systematic review. PloS one. 2016;11(6):e0156939. doi: 10.1371/journal.pone.0156939 27310297

66. Espinoza I, Osorio P, Torrejon M, Lucas-Carrasco R, Bunout D. [Validation of the WHOQOL-BREF quality of life questionnaire among Chilean older people]. Revista médica de Chile. 2011;139(5):579–86. 22051707

67. Lucas-Carrasco R. The WHO quality of life (WHOQOL) questionnaire: Spanish development and validation studies. Quality of Life Research. 2012;21(1):161–5. doi: 10.1007/s11136-011-9926-3 21611868

68. Cardona-Arias JA, Ospina-Franco LC, Eljadue-Alzamora AP. Validez discriminante, convergente/divergente, fiabilidad y consistencia interna, del whoqol-bref y el mossf-36 en adultos sanos de un municipio colombiano. Revista Facultad Nacional de Salud Pública. 2015;33(1):50–7.

69. Cadena J, Vinaccia S, Pérez A, Rico MI, Hinojosa R, Anaya J-M. The impact of disease activity on the quality of life, mental health status, and family dysfunction in colombian patients with rheumatoid arthritis. JCR: Journal Of Clinical Rheumatology. 2003;9(3):142–50. doi: 10.1097/01.RHU.0000073434.59752.f3 17041449

70. Coleman JA, Harper LA, Perrin PB, Olivera SL, Perdomo JL, Arango JA, et al. Examining the relationship between health-related quality of life in individuals with spinal cord injury and the mental health of their caregivers in Colombia, South America. International Journal of Rehabilitation Research. 2013;36(4):308–14. doi: 10.1097/MRR.0b013e3283634e7f 23817528

Článok vyšiel v časopise


2019 Číslo 12