Approaches and tools for measuring disability in low and middle-income countries

Leprosy Review

Volumn 79, Issue 1, 2008, Pages 50-64

  Van Brakel, Wim H ^a   Officer, Alana ^b  

^a ROYAL TROPICAL INSTITUTE   (Netherlands)

^b WORLD HEALTH ORGANIZATION   (Switzerland)

Author keywords

[No Author keywords available]

Indexed keywords

CONFERENCE PAPER; DAILY LIFE ACTIVITY; DATA COLLECTION METHOD; DEVELOPING COUNTRY; DISABILITY; ENVIRONMENTAL FACTOR; EVALUATION; HEALTH PROGRAM; INTERNATIONAL CLASSIFICATION OF FUNCTIONING, DISABILITY AND HEALTH; LEPROSY; LOWEST INCOME GROUP; MEASUREMENT; MONITORING; PARTICIPATION SCALE; QUALITY OF LIFE; SALSA SCALE; SCORING SYSTEM; WHODAS SCALE;

DEVELOPING COUNTRIES; DISABILITY EVALUATION; DISABLED PERSONS; HUMANS; LEPROSY; POVERTY; QUALITY OF LIFE; REPRODUCIBILITY OF RESULTS; SICKNESS IMPACT PROFILE; SOCIOECONOMIC FACTORS;

EID: 44349101969     PISSN: 03057518     EISSN: None     Source Type: Journal    
DOI: None     Document Type: Conference Paper

References (95)

1. van Brakel WH. Peripheral neuropathy in leprosy and its consequences. Lepr Rev, 2000; 71 Suppl: S146-S153.
2. van Brakel WH, Anderson AM. Impairment and disability in leprosy: in search of the missing link. Indian J Lepr, 1997; 69: 361-376.
3. Meima A, Saunderson PR, Gebre S, Desta K, Habbema JD. Dynamics of impairment during and after treatment: the AMFES cohort. Lepr Rev, 2001; 72: 158-170.
4. Schreuder PA. The occurrence of reactions and impairments in leprosy: experience in the leprosy control program of three provinces in northeastern Thailand, 1987-1995 [correction of 1978-1995]. II. Reactions. Int J Lepr Other Mycobact Dis, 1998; 66: 159-169.
5. Croft RP, Nicholls PG, Richardus JH, Smith WC. Incidence rates of acute nerve function impairment in leprosy: a prospective cohort analysis after 24 months (The Bangladesh Acute Nerve Damage Study). Lepr Rev, 2000; 71: 18-33.
6. Saunderson P, Gebre S, Desta K et al. The pattern of leprosy-related neuropathy in the AMFES patients in Ethiopia: definitions, incidence, risk factors and outcome. Lepr Rev, 2000; 71: 285-308.
7. Leprosy disabilities: magnitude of the problem. Indian J Lepr, 1996; 68: 335-344.
8. Wilder-Smith E, Wilder-Smith A, van Brakel WH, Egger M. Vasomotor reflex testing in leprosy patients, healthy contacts and controls: a cross-sectional study in western Nepal. Lepr Rev, 1996; 67: 306-317.
9. van Brakel WH, Nicholls PG, Das L et al. The INFIR Cohort Study: investigating prediction, detection and pathogenesis of neuropathy and reactions in leprosy. Methods and baseline results of a cohort of multibacillary leprosy patients in north India. Lepr Rev, 2005; 76: 14-34.
10. Reed NK, van Brakel WH, Reed DS. Progress of impairment scores following commencement of chemotherapy in multibacillary leprosy patients. Int J Lepr Other Mycobact Dis, 1997; 65: 328-336.
11. Nicholls PG, Bakirtzief Z, van Brakel WH et al. Risk factors for participation restriction in leprosy and development of a screening tool to identify individuals at risk. Lepr Rev, 2005; 76: 305-315.
12. Cross H, Choudhary R. STEP: an intervention to address the issue of stigma related to leprosy in southern Nepal. Lepr Rev, 2005; 76: 316-324.
13. Van Veen NH, Meima A, Richardus JH. The relationship between detection delay and impairment in leprosy control: a comparison of patient cohorts from Bangladesh and Ethiopia. Lepr Rev, 2006; 77: 356-365.
14. Croft RP, Nicholls PG, Steyerberg EW et al. A clinical prediction rule for nerve function impairment in leprosy patients-revisited after 5 years of follow-up. Lepr Rev, 2003; 74: 35-41.
15. Croft RP, Nicholls PG, Richardus JH, Smith WC. The treatment of acute nerve function impairment in leprosy: results from a prospective cohort study in Bangladesh. Lepr Rev, 2000; 71: 154-168.
16. Chakraborty A, Mahato M, Rao PS. Self-care programme to prevent leprosy-related problems in a leprosy colony in Champa, Chattisgarh. Indian J Lepr, 2006; 78: 319-327.
17. Benbow C, Tamiru T. The experience of self-care groups with people affected by leprosy: ALERT, Ethiopia. Lepr Rev, 2001; 72: 311-321.
18. Zhang G, Zheng T, Li W et al. Prevention of disability and rehabilitation-results from a collaborative project in China. Chin Med Sci J, 1996; 11: 136-141.
19. Heijnders ML. Experiencing leprosy: perceiving and coping with leprosy and its treatment. A qualitative study conducted in Nepal. Lepr Rev, 2004; 75: 327-337.
20. Raju MS, Kopparty SN. Impact of knowledge of leprosy on the attitude towards leprosy patients: a community study. Indian J Lepr, 1995; 67: 259-272.
21. White C. Iatrogenic stigma in outpatient treatment for Hansen's disease (leprosy) in Brazil. Health Educ Res, 2007.
22. Raju MS, Reddy JV. Community attitude to divorce in leprosy. Indian J Lepr, 1995; 67: 389-403.
23. Vlassoff C, Khot S, Rao S. Double jeopardy: women and leprosy in India. World Health Stat Q, 1996; 49: 120-126.
24. Nicholls PG, Chhina N, Bro AK et al. Factors contributing to delay in diagnosis and start of treatment of leprosy: analysis of help-seeking narratives in northern Bangladesh and in West Bengal, India. Lepr Rev, 2005; 76: 35-47.
25. Valencia LB. Social science research on social dimensions of leprosy: where are we going from here? Int J Lepr Other Mycobact Dis, 1989; 57: 847-863.
26. Kaur H, Van Brakel W. Dehabilitation of leprosy-affected people - a study on leprosy-affected beggars. Lepr Rev, 2002; 73: 346-355.
27. 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.
28. Barbotte E, Guillemin F, Chau N. Prevalence of impairments, disabilities, handicaps and quality of life in the general population: a review of recent literature. Bull World Health Organ, 2001; 79: 1047-1055.
29. Mont D. Measuring health and disability. Lancet, 2007; 369: 1658-1663.
30. Schipper A, Lubbers WJ, Hogeweg M, De Soldenhoff R. Disabilities of hands, feet and eyes in newly diagnosed leprosy patients in eastern Nepal. Lepr Rev, 1994; 65: 239-247.
31. Croft RP, Croft RA. Knowledge, attitude and practice regarding leprosy and tuberculosis in Bangladesh. Lepr Rev, 1999; 70: 34-42.
32. Tiendrebeogo A, Djakeaux DS, Asse H el al. Survey of leprosy disabilities in patients treated with multiple drug therapy in Ivory Coast. Acta Leprol, 1997; 10: 151-158.
33. Htoon MT, Win Z. Disabilities among rural leprosy patients in Myanmar. Int J Lepr Other Mycobact Dis, 1994; 62: 126-130.
34. Zhang G, Li W, Yan L et al. An epidemiological survey of deformities and disabilities among 14,257 cases of leprosy in 11 counties. Lepr Rev, 1993; 64: 143-149.
35. Pönnighaus IM, Boerrigter G, Fine PE et al. Disabilities in leprosy patients ascertained in a total population survey in Karonga District, northern Malawi. Lepr Rev, 1990; 61: 366-374.
36. Barkataki P, Kumar S, Rao PS. Knowledge of and attitudes to leprosy among patients and community members: a comparative study in Uttar Pradesh, India. Lepr Rev, 2006; 77: 62-68.
37. Iyor FT. Knowledge and attitude of Nigerian physiotherapy students about leprosy. Asia Pac Disabil Rehabil J, 2005; 16: 85-92.
38. van Brakel WH. Measuring leprosy stigma - a preliminary review of the leprosy literature. Int J Lepr Other Mycobact Dis, 2003; 71: 190-197.
39. Asnake MK, Ahmed M, Genebo T et al. Knowledge and attitude of health professionals in relation to the integration of leprosy control into the general health service in Ethiopia. Int J Lepr Other Mycobact Dis, 2000; 68: 299-306.
40. Chen XS, Ye GY, Jiang C et al. An investigation of attitudes, beliefs and behaviour of leprosy patients, family members and PHC workers towards multidrug therapy in Yangzhou and Dongtai Districts of China. Lepr Rev, 1997; 68: 155-161.
41. Kumaresan JA, Maganu ET. Knowledge and attitude of health workers towards leprosy in north-western Botswana. East Afr Med J, 1994; 71: 366-367.
42. van Brakel WH, Reed NK, Reed DS. Grading impairment in leprosy. Lepr Rev, 1999; 70: 180-188.
43. Brandsma JW, van Brakel WH. WHO disability grading: operational definitions. Lepr Rev, 2003; 74: 366-373.
44. Brandsma JW, de Jong N, Tjepkema A. Disability grading in leprosy. Suggested modifications to the WHO disability grading form. Lepr Rev, 1986; 57: 361-369.
45. Srinivasan H. Deformities and disabilities-unfinished agenda in leprosy work. Lepr Rev, 1995; 66: 193-200.
46. Srinivasan H. Physical rehabilitation and disability prevention. Indian J Lepr, 1993; 65: 399-403.
47. Srinivasan H. Newer tasks for leprosy workers. Indian J Lepr, 1990; 62: 409-415.
48. Srinivasan H. To control leprosy as in the patient mattered. Indian J Lepr, 1984; 56: 386-395.
49. Brandsma JW, Heerkens YF, Lakerveld-Heyl K, Mischner-Van Ravensberg CD. The international classification of impairments, disabilities and handicaps in leprosy-control projects. Lepr Rev, 1992; 63: 337-344.
50. van Brakel WH, Anderson AM, Worpel FC et al. A scale to assess activities of daily living in persons affected by leprosy. Lepr Rev, 1999; 70: 314-323.
51. 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.
52. Ustun TB, Chatterji S, Bickenbach J, Kostanjsek N, Schneider M. The International Classification of Functioning, Disability and Health: a new tool for understanding disability and health. Disabil Rehabil, 2003; 25: 565-571.
53. World Health Organization. International Classification of Functioning, Disability and Health (ICF). WHO, Geneva, 2001.
54. Disabled People International. DPI position paper on the definition of disability. http://v1.dpi.org/lang-en/resources/details.php?page = 74 [cited 2007 April 30].
55. Schuntermann MF. The implementation of the International Classification of Functioning, Disability and Health in Germany: experiences and problems. Int J Rehabil Res, 2005; 28: 93-102.
56. Hemmingsson H, Jonsson H. An occupational perspective on the concept of participation in the International Classification of Functioning, Disability and Health-some critical remarks. Am J Occup Ther, 2005; 59: 569-576.
57. Dahl TH. International Classification of Functioning, Disability and Health: an introduction and discussion of its potential impact on rehabilitation services and research. J Rehabil Med, 2002; 34: 201-204.
58. Chapireau F. Old and new long stay patients in French psychiatric institutions: results from a national random survey with two-year follow-up. Encephale, 2005; 31: 466-476.
59. Leonardi M, Bickenbach J, Ustun TB et al. The definition of disability: what is in a name? Lancet, 2006; 368: 1219-1221.
60. Global strategy for further reducing the leprosy burden and Sustaining leprosy control activities 2006-2010. Operational guidelines. Lepr Rev, 2006; 77: IX, X, 1-IX, X,50.
61. ILEP. How to diagnose and treat leprosy. International Federation of Anti-Leprosy Associations (ILEP), London, 2001.
62. Walter CS. Social aspects and rehabilitation. International Leprosy Congress, Beijing, 7-12 September 1998. Workshop report. Lepr Rev, 1999; 70: 85-94.
63. Reddy NB, Satpathy SK, Krishnan SA, Srinivasan T. Social aspects of leprosy: a case study in Zaria, northern Nigeria. Lepr Rev, 1985; 56: 23-25.
64. Varkevisser CM. Methodology of research into social aspects of leprosy control. Lepr Rev, 1979; 50: 223-229.
65. Hasselblad OW. Psycho-social aspects of leprosy. Bull Pan Am Health Organ, 1974; 8: 283-288.
66. Kopparty SN. Problems, acceptance and social inequality: a study of the deformed leprosy patients and their families. Lepr Rev, 1995; 66: 239-249.
67. 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: 2443-2453.
68. de Stigter DH, de Geus L, Heynders ML. Leprosy: between acceptance and segregation. Community behaviour towards persons affected by leprosy in eastern Nepal. Lepr Rev, 2000; 71: 492-498.
69. Joseph GA, Rao PS. Impact of leprosy on the quality of life. Bull World Health Organ, 1999; 77: 515-517.
70. Wang CH. Quality of life and health for persons living with leprosy. Nurs Sci Q, 1997; 10: 144-145.
71. Ebenso J, Ebenso BE. Monitoring impairment in leprosy: choosing the appropriate tool. Lepr Rev, 2007; 78: 270-280.
72. Brandsma W, Larsen M, Richard C, Ebenezer M. Inter-rater reliability of WHO 'disability' grading. Lepr Rev, 2004; 75: 131-134.
73. Nienhuis WA, van Brakel WH, Butlin CR, van der Werf TS. Measuring impairment caused by leprosy: inter-tester reliability of the WHO disability grading system. Lepr Rev, 2004; 75: 221-232.
74. ILEP. How to prevent disability in leprosy. International Federation of Anti-Leprosy Associations (ILEP), London, 2006.
75. WHODAS II Disability Assessment Schedule. 2007. 15-8-2007. Ref Type: Internet Communication.
76. Cardol M, Brandsma JW, de Groot IJ et al. Handicap questionnaires: what do they assess? Disabil Rehabil, 1999; 21: 97-105.
77. Cardol M, de Haan RJ, de Haan RN et al. Psychometric properties of the impact on participation and autonomy questionnaire. Arch Phys Med Rehabil, 2001; 82: 210-215.
78. Wilkie R, Peat G, Thomas E, Croft PR. Measuring the consequences of osteoarthritis and joint pain in population-based studies: can existing health measurement instruments capture levels of participation? Arthritis Rheum, 2004; 51: 755-762.
79. Perenboom RJ, Chorus AM. Measuring participation according to the International Classification of Functioning, Disability and Health (ICF). Disabil Rehabil, 2003; 25: 577-587.
80. Tate D, Forchheimer M, Maynard F, Dijkers M. Predicting depression and psychological distress in persons with spinal cord injury based on indicators of handicap. Am J Phys Med Rehabil, 1994; 73: 175-183.
81. Lo R, Harwood R, Woo J et al. Cross-cultural validation of the London Handicap Scale in Hong Kong Chinese. Clin Rehabil, 2001; 15: 177-185.
82. Harwood RH, Rogers A, Dickinson E, Ebrahim S. Measuring handicap: the London Handicap Scale, a new outcome measure for chronic disease. Qual Health Care, 1994; 3: 11-16.
83. Anandaraj H. Measurement of dehabilitation in patients of leprosy-a scale. Ind J Lepr, 1995; 67: 153-160.
84. Noreau L, Fougeyrollas P, Vincent C. The Life-H: assessment of the quality of social participation. Technol Disabil, 2002; 3: 113-118.
85. Wilkie R, Peat G, Thomas E el al. The Keele Assessment of Participation: a new instrument to measure participation restriction in population studies. Combined qualitative and quantitative examination of its psychometric properties. Qual Life Res, 2005; 14: 1889-1899.
86. Disability and the Environment in Disability and Social Change - A South African Agenda. Cape Town: HSRC Press; 2006.
87. Whiteneck GG, Harrison-Felix CL, Mellick DC el al. Quantifying environmental factors: a measure of physical, attitudinal, service, productivity, and policy barriers. Arch Phys Med Rehabil, 2004; 85: 1324-1335.
88. Gray DB, Hollingsworth HH, Stark S, Morgan KA. A subjective measure of environmental facilitators and barriers to participation for people with mobility limitations. Disabil Rehabil, 2007; 29: 1-24.
89. WHOQOL. Development of the World Health Organisation WHOQOL-BREF quality of life assessment. Psychol Med, 1998; 551-558.
90. Tsutsumi A, Izutsu T, Kato S et al. Reliability and validity of the Bangla version of WHOQOL-BREF in an adult population in Dhaka, Bangladesh. Psychiatry Clin Neurosci, 2006; 60: 493-498.
91. Bell-Krotoski JA, Fess EE, Figarola JH, Hiltz D. Threshold detection and Semmes-Weinstein monofilaments. J Hand Ther, 1995; 8: 155-162.
92. Malaviya GN, Husain S, Girdhar A, Girdhar BK. Sensory functions in limbs of normal persons and leprosy patients with peripheral trunk damage. Indian J Lepr, 1994; 66: 157-164.
93. Gallagher P, Maclachlan M. The Trinity Amputation and Prosthesis Experience Scales and quality of life in people with lower-limb amputation. Arch Phys Med Rehabil, 2004; 85: 730-736.
94. Legro MW, Reiber GD, Smith DG et al. Prosthesis evaluation questionnaire for persons with lower limb amputations: assessing prosthesis-related quality of life. Arch Phys Med Rehabil, 1998; 79: 931-938.
95. WHO Expert Committee on Leprosy. World Health Organ Tech Rep Ser, 1998; 874: 1-43.