A SURVEY OF PROBLEMS IN ACTIVITIES OF DAILY LIVING AMONG PERSONS AFFECTED BY LEPROSY

ABSTRACT

Disability as defined in the 'International Classification of Impairments, Disabilities and Handicaps' (ICIDH) has received little attention in the field of leprosy. This paper describes the results of a survey aimed at describing disability in people affected by leprosy. Two hundred and sixty-nine subjects were included in the study. The prevalence of different types of impairment in this sample ranged from 7.6% (foot drop) to 36% (weakness little finger abduction). The most commonly affected indoor activities were shaving (25%), cutting nails (22%) and tying a knot (18%). Among the outdoor activities, running, ploughing, threshing and milking a cow or buffalo were the most commonly affected (26-34%). The main conclusions are that 1) experiencing severe difficulties with activities of daily life is a common problem in persons with chronic impairments due to leprosy, and 2) the level of difficulty can be assessed and measured. As disability is a main outcome of interest in rehabilitation, we recommend that efforts should be made to include disability assessment as a standard activity for monitoring and evaluation of rehabilitation, both for individuals and on programme level. Knowledge of the disability status of a person will be valuable in needs-assessment for rehabilitation interventions and in clinical decision making regarding surgical and other treatments.

INTRODUCTION

Impairment of autonomic, sensory and motor nerve function is a common complication of leprosy (1,2,3). It often leads to secondary impairments or deformities of the eyes, face, hands and feet (4,5). `Impairments' and deformities (visible impairments) may cause `disabilities' and adverse social reactions (handicap). These concepts were defined in the 'International Classification of Impairments, Disabilities and Handicaps' (ICIDH). Impairment was defined as ".. any loss or abnormality of psychological, physiological or anatomical structure or function" and Disability as ".. any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being"(6).

Srinivasan and several other authors pointed out the advantages of applying the concepts defined in the ICIDH to the field of leprosy (7,8,9). Recently, Palande pointed out the importance of the concept of 'disability'(10). The outcome of rehabilitation should be assessed by looking at how successful it has been in reducing the negative functional and social consequences of the disease in the person's life (11). The concepts described in the ICIDH are very helpful in this process. They are now widely used in the field of rehabilitation medicine and a draft version of the second edition (ICIDH-2) has already been distributed for testing.

Information on the impairment and disability status of leprosy patients may be used for 1) decision making and management concerning (physical) rehabilitation of individual patients, 2) assessing the effectiveness of a leprosy programme in preventing the development of (further) impairments and disabilities, and treatment of pre-existing ones, and 3) planning of resources needed for treatment and care of patients with impairments and disabilities, before and after release from drug therapy.

Usually, only data on the WHO 'disability grading'(12) of patients are collected and often only the 'disability status' at the time of diagnosis is reported in routine statistics. From a rehabilitation point of view, this is insufficient for a number of reasons. Namely, the WHO disability grading does not grade disabilities but impairments (grade 1 refers to impairment of sensibility; grade 2 to visible impairment). It is insensitive to change in the patient's condition. Information on patients with 'grade 1' is not used, and it does not grade severity from a functional point of view.

As far as we know, no 'instrument' has been developed for assessing difficulties experienced in performing activities of daily living (ADL), suitable for use with persons affected by leprosy in developing countries. In a time when more and more emphasis is placed on rehabilitation, such a tool is needed to adequately assess the rehabilitation needs of those affected by leprosy and to evaluate the results of rehabilitation interventions. In preparation for the development of such an assessment scale, detailed information was needed on the impairment and disability status of a large number of people affected by leprosy. An impairment and disability survey was therefore designed to collect such information among persons affected by leprosy in the western region of Nepal. The aims of the study reported here were: to collect information on disabilities among patients with leprosy-related impairments, and to examine the relationship between impairment and disability in persons affected by leprosy. A report of the results related to the second objective has been published elsewhere (13). The current paper describes the findings of the ADL survey.

SUBJECTS AND METHODS

The study was a cross-sectional survey of persons affected by leprosy admitted in or attending outpatient clinics of the Green Pastures Hospital in Pokhara, Nepal, and field clinics in the western region. All persons included in the study were taking or had completed anti-leprosy treatment. Any registered patient present at any of the clinics and referral centres on the survey day were eligible to be included in the sample for the study. Verbal consent was sought from all subjects before they were admitted to the study. For practical reasons only patients attending the clinics could be examined and interviewed. Simple consecutive sampling was used to select the sample from the clinics attended by the survey team. All patients with any impairment and 10% of those without impairments were asked to take part in a questionnaire survey on disabilities experienced by them. Two hundred and sixty-nine people participated in the disability part of the study. Their mean age was 45 (range 10-90); 74% were males. The sex distribution in the four age groups used is shown in Figure 1. Most patients (93%) were multibacillary in type of infection.


Outcome measures used were the prevalence of leprosy-related disabilities. All patients admitted to the study were physically examined according to a checklist. Standardised definitions were used for various impairments (13). Impairments were graded according to the so-called WHO 'disability' grading (12). The methods used for voluntary muscle testing and sensory testing, as well as the criteria for motor and sensory impairment, are described elsewhere (13). All subjects were interviewed about their common daily activities. As far as possible, the interview was conducted in the person's vernacular language. They were asked to rank a list of activities on a scale of difficulty of performing them (same as before, some difficulty, much difficulty, only possible with help or impossible). As much as possible, the interviewers were of the same sex as the interviewees.

The questionnaire had been developed using standard procedures (14). Initially, suggestions for activities to be questioned were collected during a group consultation of Nepali staff members. A questionnaire was drawn up in English, translated into Nepali and translated back to check the translation. It was then pilot tested on 26 subjects. Questions endorsed less than 10% or more than 90% were omitted. The remaining questionnaire was checked for face validity. Extensive validity and reliability testing was not done at this stage, because this instrument was only a precursor of an eventual activity assessment. The questionnaire consisted of 68 questions plus an additional three questions for men or women separately.

Prevalence estimates are presented as percentages with 95% confidence intervals. Data were initially entered in Epi Info databases (15). Analysis was done with STATA for Windows, version 5.0.(16).

RESULTS

Table 1. shows the distribution of different occupations among the sample population studied.

Table 1: Distribution of occupations among the sample

The majority (63%) were farmers reflecting the rural character of the population of the region.

Table 2 shows the distribution of WHO maximum disability (impairment) grades among the subjects. More than half of the subjects (59%) had impairment of either grade 1 or 2.

Table 2: Distribution of maximum WHOimpairment grades in the sample.

The prevalence of the most important types of impairments among the interviewees is shown in Table 3.

Table 3: Prevalence of impairments in the sample.

** Frequency of `bilateral' involvement is given only where this is relevant in the context of a particular disability which will occur or be much worse if the impairment is bilateral.

It should be noted that in this table sensory impairment refers to loss of protective sensation, i.e. unable to feel the 2 g filament on the hand or 10 g filament on the sole.


Table 4 shows the prevalence of disability, grouped according to type of activity.

Table 4: Prevalence of difficulty with activities of daily living reported by persons affected by leprosy (N = 269).

**Each activity category is sorted by frequency of `much difficulty'

1. Don't do it = the number of subjects reporting they did not do a given activity for reasons other than an impairment due to leprosy, 2. Patuka = a cloth worn wrapped around the waist.

Figure 2 shows the most commonly affected indoor activities.





DISCUSSION

Rehabilitation deals with the (chronic) consequences of disease on the daily life of the patient. These consequences are disability and handicap. Although the two have been conceptually separated in the ICIDH (6), they are two sides of the same phenomenon, namely, the disadvantages resulting from chronic impairments (17). The cause of the impairment that resulted in the disablement is less important. It is the problems experienced by the person affected that matter. If a person is not disabled and does not experience negative social reactions, he or she can usually live happily with his or her impairment (11). Rehabilitation therefore aims at reducing disability and handicap (11,18,19).

Leprosy is notorious for causing permanent impairments and deformities, which are the main causes for the well-known complex of social reactions commonly known as 'stigma' (20,21). Impairments have received much attention of investigators in the field of leprosy. Although almost exclusively described as 'disabilities', many have studied the types of impairment occurring in leprosy and their prevalence (22,23,24,25), their management (4,5,26), and more recently, also their incidence and risk factors (27,28,29,30).

Anyone who has worked with persons affected by leprosy knows that those with insensitive hands, weakness of muscles and deformities of hands and feet have difficulty with some, even common, activities of daily living. The use of certain 'assistive devices' such as ModulanR grip aids, leather straps and gloves to hold spoons, pens and other tools, is quite widespread in established leprosy centres. Yet the difficulties experienced in activities of daily life have received surprisingly little attention in overall case management and in control programmes. Interventions aimed at 'reablement' (26,31) through re-constructive surgery date back to the pioneering work of Dr. Paul Brand and others, more than four decades ago (32,33). Nevertheless, a systematic, holistic approach to rehabilitation, including physical, psychological, spiritual and socio-economic aspects, has been lacking.

Reasons for the lack of attention paid to disability as defined in the ICIDH include the lack of a well-defined concept of 'disability' among leprosy workers, confusion over terminology, the fact that leprosy workers prefer to look at 'patients' from a medical point of view, and the lack of an instrument to assess or measure disability.

The extent and severity of impairment is comparatively easy to quantify. It can be observed, examined and measured or counted by the health worker asking few, if any, questions to the person involved. Examples are nerve palpation, voluntary muscle testing, sensory testing and the WHO grading system. Disability, however, can only be assessed by asking questions and carefully listening to the answers of the affected person. The reason is that disability is very much context-dependent (34). One individual with a given impairment may experience much more difficulty with certain activities than someone with the same impairment living under different circumstances. Rehabilitation requires us to look at the situation from the patient's point of view (9).

The outcome of treatment should be assessed against the aims that were set. If the aim of an intervention is to increase the ability of a person in perform a certain activity, the results should be assessed using a pre- and post-intervention activity 'measurement'. Traditionally, even the outcome of rehabilitative surgery is measured with impairment measures such as range of movement of joints, lid gap, etc. However, measures of activity (disability) and social participation (handicap) are much more meaningful for the patient and thus for clinical decision making (35,36).

The current study is, to our knowledge, the first to report on disability in leprosy applying the definitions of the ICIDH. We studied the prevalence of difficulties in activities of daily living experienced by persons impaired due to leprosy. One third to one half of those interviewed reported at least 'some difficulty' with many of the activities (Table 4). This high percentage may be due in part to factors other than leprosy, such as the difficult terrain in Nepal. People who only experience 'some difficulty' do not usually need rehabilitation. The prevalence of those reporting 'much difficulty', 'only with help' or 'impossible' was up to 25% in indoor and 34% in outdoor activities. This shows that more pronounced disability is not uncommon in persons with impairments due to leprosy.

The results from this study have been used to design a simple activity assessment scale for use with people living under circumstances similar to those in Nepal which is to be published elsewhere. This questionnaire will be made available for general use later.

CONCLUSIONS

The authors have shown that experiencing severe difficulties with activities of daily life is a common problem in persons with chronic impairments due to leprosy, and the level of difficulty can be assessed and measured.

As disability is an important aspect of rehabilitation, we recommend that efforts be made to include activity assessment as a standard procedure for monitoring and evaluation of rehabilitation, both for individuals and for programmes. Knowledge of the disability status of a person will be valuable in needs-assessment for rehabilitation interventions and in clinical decision making regarding surgical and other treatment.

ACKNOWLEDGEMENT

We wish to thank Allart Nugteren, Jasha Fiselier, Helen Price, Sabreena Mahroof, Liz Fuller, Mark Jones, Clair Broadley and Paul Wright for their valuable help with this study. Special thanks go to our mobile team staff, to Dr. Frauke Worpel, former Superintendent and Dr. Jukka Knuuttila, Senior Medical Officer at the Green Pastures Hospital, and to the staff of the physiotherapy and occupational therapy departments at GPH for their help in bringing this study to a successful end. May our work bring glory to God!

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