Towards a toolkit for cross-neglected tropical disease morbidity and disability assessment

International Health

Volumn 8, Issue , 2015, Pages i71-i81

  Van't Noordende, Anna T ^a   Kuiper, Heleen ^a   Ramos, Alberto N ^b   Mieras, Liesbeth F ^a   Barbosa, Jaqueline C ^b   Pessoa, Sarah M F ^b   Souza, Eliana A ^b   Fernandes, Thayse A ^b   Hinders, Duane C ^c   Praciano, Margarida M A ^c   Van Brakel, Wim H ^a,d  

^a Netherlands Leprosy Relief   (Netherlands)

^b FEDERAL UNIVERSITY OF CEARÁ   (Brazil)

^c Netherlands Leprosy Relief   (Brazil)

^d VU UNIVERSITY MEDICAL CENTER   (Netherlands)

Author keywords

Disability assessment; Measurement; Morbidity; Neglected tropical diseases; Quality of life; Social participation

Indexed keywords

ADULT; AGED; ARTICLE; BRAZIL; CHAGAS DISEASE; CLINICAL ASSESSMENT TOOL; CONTROLLED STUDY; CROSS-SECTIONAL STUDY; DISABILITY; DISEASE ASSESSMENT; DISEASE SURVEILLANCE; FEMALE; HUMAN; LEISHMANIASIS; LEPROSY; MAJOR CLINICAL STUDY; MALE; MORBIDITY; NEGLECTED TROPICAL DISEASE; PARTICIPATION SCALE; PILOT STUDY; PRIORITY JOURNAL; SCHISTOSOMIASIS; SELF REPORTING QUESTIONNAIRE; TROPICAL DISEASE; WHO DISABILITY ASSESSMENT SCHEDULE; WHO QUALITY OF LIFE BREF; WHO QUALITY OF LIFE DISABILITY; COMORBIDITY; COMPLICATION; DELPHI STUDY; DISABLED PERSON; MIDDLE AGED; NEGLECTED DISEASE; QUALITY OF LIFE; TROPICAL MEDICINE;

BRAZIL; CHAGAS DISEASE; COMORBIDITY; CROSS-SECTIONAL STUDIES; DELPHI TECHNIQUE; DISABILITY EVALUATION; DISABLED PERSONS; FEMALE; HUMANS; LEISHMANIASIS; LEPROSY; MALE; MIDDLE AGED; NEGLECTED DISEASES; QUALITY OF LIFE; SCHISTOSOMIASIS; TROPICAL MEDICINE;

EID: 84960962162     PISSN: 18763413     EISSN: 18763405     Source Type: Journal    
DOI: 10.1093/inthealth/ihw006     Document Type: Article

References (53)

1. Azoh BJ. Social sciences research on infectious diseases of poverty: too little and too late? PLoS Negl Trop Dis 2014;8:e2803.
2. Feasey N, Wansbrough-Jones M, Mabey D et al. Neglected tropical diseases. Br Med Bull 2010;93:179-200.
3. Hotez PJ, Molyneux DH, Fenwick A et al. Incorporating a rapid-impact package for neglected tropical diseases with programs for HIV/AIDS, tuberculosis, and malaria. PLoS Med 2006;3:e102.
4. Hotez PJ, Molyneux DH, Fenwick A et al. Control of neglected tropical diseases. New Engl J Med 2007;357:1018-27.
5. WHO. Investing to overcome the burden of neglected tropical diseases. Third WHO report on neglected tropical diseases. Geneva:World Health Organization; 2015. http://www.who.int/neglected_diseases/9789241564861/en/[accessed 24 February 2015].
6. Deribe K, Meribo K, Gebre T et al. The burden of neglected tropical diseases in Ethiopia, and opportunities for integrated control and elimination. Parasit Vectors 2012;5:1-15.
7. WHO. Working to overcome the global impact of neglected tropical diseases. First WHO report on neglected tropical diseases. Geneva:World Health Organization; 2010. http://www.who.int/neglected_diseases/2010report/en/[accessed 24 February 2015].
8. Kolaczinski JH, Kabatereine NB, Onapa AW et al. Neglected tropical diseases in Uganda: the prospect and challenge of integrated control. Trends Parasitol 2007;23:485-93.
9. Hotez PJ, Alvarado M, Basáñez M-G et al. The Global Burden of Disease Study 2010: Interpretation and Implications for the Neglected Tropical Diseases. PLoS Negl Trop Dis 2014;8:e2865.
10. WHO. ICF Checklist Version 2.1a, Clinical Form for International Classification of Functioning, Disability and Health: ICF. Geneva:World Health Organization; 2003. http://www.who.int/classifications/icf/training/icfchecklist.pdf [accessed 5 April 2015].
11. WHO. Toward a common language for function, disability, and health:ICF. Geneva: World Health Organization; 2002. http://www.who.int/classifications/icf/icfbeginnersguide.pdf?ua=1 [accessed 25 February 2015].
12. Lammie PJ, Fenwick A, Utzinger J. A blueprint for success: integration of neglected tropical disease control programmes. Trends Parasitol 2006;22:313-21.
13. Mieras LF, Anand S, van Brakel WH et al. Neglected Tropical Diseases, Cross-Cutting Issues Workshop, 4-6 February 2015, Utrecht, the Netherlands: meeting report. Int Health 2016;8(Suppl 1):i7-i11.
14. Herdman M, Fox-Rushby J, Badia X. A model of equivalence in the cultural adaptation of HRQoL instruments: the universalist approach. Qual Life Res 1998;7:323-35.
15. Bowden A, Fox-Rushby JA. A systematic and critical review of the process of translation and adaptation of generic health-related quality of life measures in Africa, Asia, Eastern Europe, the Middle East, South America. Soc Sci Med 2003;57:1289-306.
16. Stevelink SAM, van Brakel WH. The cross-cultural equivalence of participation instruments: a systematic review. Disabil Rehabil 2013;35:1256-68.
17. WHO. Toward a common language for function, disability, and health:ICF. Geneva: World Health Organization; 2002. http://www.who.int/classifications/icf/icfbeginnersguide.pdf?ua=1 [accessed 25 February 2015].
18. WHO. A user's guide to the Self Reporting Questionnaire (SRQ). Geneva:World Health Organization; 1994. http://whqlibdoc.who.int/hq/1994/WHO_MNH_PSF_94.8.pdf [accessed 20 April 2015].
19. WHO. Measuring quality of life: The World Health Organization quality of life instruments (the WHOQOL-100 and the WHOQOL-BREF). Geneva: WHOQOL Group, Division of Mental Health and Prevention of Substance Abuse; 1997. http://www.who.int/mental_health/media/68.pdf [accessed 29 April 2015].
20. WHOQOL Group. The World Health Organization quality of life assessment (WHOQOL): development and general psychometric properties. Soc Sci Med 1998;46:1569-85.
21. Üstün T, Kostanjsek N, Chatterji S et al. Measuring health and disability:manual for WHO disability assessment schedule WHODAS 2.0. Geneva: World Health Organization; 2010.
22. Van Brakel WH, Anderson AM, Mutatkar RK et al. The Participation Scale: measuring a key concept in public health. Disabil Rehabil 2006;28:193-203.
23. Kelders R, van Brakel WH, Beise K. Testing and validating a simplified scale to measure social participation of people with disabilities in Indonesia. Disabil Rehabil 2012;34:638-46.
24. De Zeeuw J, Douwstra M, Omansen TF et al. Psychometric properties of the participation scale among former Buruli ulcer patients in Ghana and Benin. PLoS Neglect Trop D 2014;8:e3254.
25. Hotez PJ, Fujiwara RT. Brazil's neglected tropical diseases: an overview and a report card. Microbes Infect 2014;16:601-6.
26. Martins-Melo FR, Assunção-Ramos AV, Ramos AN Jr et al. Leprosyrelated mortality in Brazil: a neglected condition of a neglected disease. Trans R Soc Trop Med Hyg 2015;109:643-52.
27. NTD Stakeholder Working Group (2015). Uniting to Combat Neglected Tropical Diseases. Country Leadership and Collaboration on Neglected Tropical Diseases. Third progress report of the London Declaration. http://unitingtocombatntds.org/sites/default/files/document/UTCNTD %20FULL%20REPORT.pdf [accessed 8 August 2015].
28. Kelemen BW, Haig AJ, Goodnight S et al. The nature and prevalence of disability in a ghanaian community as measured by the language independent functional evaluation. Pan Afr Med J 2013;14:103-10.
29. Hébert R. Functional decline in old age. Can Med Assoc J 1997;157:1037-45.
30. Salsa Collaborative Study Group. The development of a short questionnaire for screening of activity limitation and safety awareness (SALSA) in clients affected by leprosy or diabetes. Disabil Rehabil 2007;29:689-700.
31. Van Brakel WH, Sihombing B, Djarir H et al. Disability in people affected by leprosy: the role of impairment, activity, social participation, stigma and discrimination. Glob Health Action 2012;5:283-90.
32. Slim FJ, van Schie CH, Keukenkamp R et al. Effects of impairments on activities and participation in people affected by leprosy in The Netherlands. J Rehabil Med 2010;42:536-43.
33. Nardi SMT, Paschoal VD, Zanetta DMT. Limitations in activities of people affected by leprosy after completing multidrug therapy:application of the SALSA scale. Leprosy Rev 2012;83:172.
34. Silveira C, Parpinelli MA, Pacagnella RC et al. Adaptação transcultural da Escala de Avaliação de Incapacidades da Organização Mundial de Saúde (WHODAS 2.0) para o Português. Rev Assoc Med Bras 2013;59:234-40.
35. Silva F, Sampaio RF, Ferreira FR et al. Influence of context in social participation of people with disabilities in Brazil. Rev Panam Salud Publ 2013;34:250-6.
36. Rensen C, Bandyopadhyay S, Gopal PK et al. Measuring leprosy-related stigma-a pilot study to validate a toolkit of instruments. Disabil Rehabil 2011;33:711-9.
37. Stevelink SAM, van Brakel WH, Augustine V. Stigma and social participation in Southern India: Differences and commonalities among persons affected by leprosy and persons living with HIV/AIDS. Psychol Health Med 2011;16:695-707.
38. Yanik M, Gurel MS, Simsek Z et al. The psychological impact of cutaneous leishmaniasis. Clin Exp Dermatol 2004;29:464-7.
39. Leekassa R, Bizuneh E, Alem A. Prevalence of mental distress in the outpatient clinic of a specialized leprosy hospita. Addis Ababa, Ethiopia, 2002. Leprosy Rev 2004;75:367-75.
40. Tsutsumi A, Izutsu T, Islam AM et al. The quality of life, mental health, and perceived stigma of leprosy patients in Bangladesh. Soc Sci Med 2007;64:2443-53.
41. Ormel J, VonKorffM, Ustun TB et al. Common mental disorders and disability across cultures: results from the WHO Collaborative Study on Psychological Problems in General Health Care. JAMA 1994;272:1741-8.
42. Berlim MT, Pavanello DP, Caldieraro MA et al. Reliability and validity of the WHOQOL BREF in a sample of Brazilian outpatients with major depression. Qual Life Res 2005;14:561-4.
43. Castro MDG, Oliveira MDS, Miguel AC et al. WHOQOL-BREF psychometric properties in a sample of smokers. Rev Bras Psiquiatr 2007;29:254-7.
44. Chachamovich E, Trentini C, Fleck MP. Assessment of the psychometric performance of the WHOQOL-BREF instrument in a sample of Brazilian older adults. Int Psychogeriatr 2007;19:635-46.
45. Fleck M, Louzada S, Xavier M et al. Application of the Portuguese version of the abbreviated instrument of quality life WHOQOL-BREF. Rev Saude Publ 2000;34:178-83.
46. WHO. WHOQOL-BREF: introduction, administration, scoring and generic version of the assessment: field trial version, December 1996. Geneva: World Health Organization; 1996. http://who.int/iris/bitstream/10665/63529/1/WHOQOL-BREF.pdf?ua=1 [accessed 29 April 2015].
47. Costa MD, Terra FDS, Costa RD et al. Assessment of quality of life of patients with leprosy reactional states treated in a dermatology reference center. An Bras Dermatol 2012;87:26-35.
48. Reis FJ, Cunha AJ, Gosling AP et al. Quality of Life and its domains in leprosy patients after neurolysis: a study using WHOQOL-BREF. Lepr Rev 2013;84:119-23.
49. Zeldenryk L, Gordon S, Gray M et al. Disability measurement for lymphatic filariasis: a review of generic tools used within morbidity management programs. PLoS Negl Trop Dis 2012;6:e1768.
50. Zeldenryk L, Gordon S, Gray M et al. Cognitive testing of the WHOQOL-BREF Bangladesh tool in a northern rural Bangladeshi population with lymphatic filariasis. Qual Life Res 2013;22:1917-26.
51. De Souza AC, da Costa Rocha MO, Teixeira AL et al. Depressive symptoms and disability in chagasic stroke patients: impact on functionality and quality of life. J Neurol Sci 2013;324:34-7.
52. Power MJ, Green AM. Development of the WHOQOL disabilities module. Qual Life Res 2010;19:571-84.
53. Stevelink SAM, Hoekstra T, Nardi SMTet al. Development and structural validation of a shortened version of the Participation Scale. Disabil Rehabil 2012;34:1596-607.