Workshop 10: management of physical disability
| Chair: | Frank Duerksen |
| Rapporteurs: | Dinkar Palande |
| Roland Kazen |
Participants
| P. W. Brand | A. Shah |
| J. Ferreira | T. Smith |
| R. Jerskey | G. Traple |
| A. Nicholl | M. Virmon |
| S. Partheebarajan | J. Watson |
| S. Renzo | R. Winslow |
Although multidrug therapy (MDT) has changed the outlook of the bacteriological aspect of leprosy, the position regarding deformity and disability remains the same. For a patient with a deformity and disability, the cure consists of either its prevention or its correction. In the last 5 years there has been increasing recognition of the importance of including prevention of disability (POD) as an essential part of leprosy management. Within leprosy rehabilitation are world views which must be addressed within the social, cultural and psychosocial context.
The Workshop considered the following issues: prevention of disability (POD); early detection of nerve damage; monitoring; training; and care after cure.
Prevention of disability. The prevalence of patients with impairment continues to rise over the years. The incidence of disability is only slightly diminished, therefore the number of patients in need of disability control is still very high.
The most common use of the World Health Organization (WHO) disability grading is as a new case-finding indicator. If it is to be used to determine disability caseload, it is essential that discharged patients and grade 1 disabilities are included. WHO grading is neither intended nor appropriate for monitoring changes in level of impairment. For this purpose, more detailed measurable clinical information is needed.
Leprosy control programs need to secure funding and ensure effective training of staff in the early identification and monitoring of impairment and the prevention of further deterioration.
One of the tried methodologies is as given in the ILEP publication "Prevention of Disability. Guidelines for Leprosy Control Programs," (March) 1993.
It has to be recognized by all concerned that impairment of function can occur before, during and after chemotherapy.
Public awareness has an impact on early detection and, consequently, on prevention of disability. Disability prevention and rehabilitation ensures the credibility of leprosy control programs. The number of presentations under rehabilitation in this Congress attests to the increasing awareness of its importance.
Early detection of nerve damage. Early detection of nerve damage is the key to prevention of deformity and, consequently, of stigma in leprosy. Adequate training of staff in the evaluation of clinical, sensory and motor aspects of nerve function is essential and feasible.
Motor and sensory testing by quantitative methods is available and feasible under field conditions, and is essential for the proper monitoring of nerve damage. Tests should be performed at the time of diagnosis and periodically during and after treatment. We recommend the use of the well-documented and widely used standardized, graded, nylon monofilaments for sensory testing.
Methodology should be adapted to regional conditions, but it is essential that some type of periodic quantitative assessment is used.
A patient with any clearly defined loss of sensation in the eyes, feet and hands has to be regarded as being at high risk for further deterioration and, consequently, needs careful monitoring.
The patient's awareness of the risk factors and self-cxamination is essential to ensure voluntary reporting.
Monitoring. It is time that the leprosy program manager assume responsibility for disability control during and after treatment. This includes monitoring of: a) vision, wounds and cracks of insensitive parts; b) the need for footwear, its acceptability and distribution; c) ongoing self-care programs, and d) the needed protective and adaptive appliances.
Training. The need for training includes the patient, his family, community and staff.
The patient needs to be trained to recognize symptoms and signs of early nerve involvement and deterioration of any present condition, especially of the eyes, feet and hands. The patient also needs to be trained in self care and in the use of protective measures. The training is not complete until the patient's compliance is observed.
The community needs to be made aware that persisting deformities in a cured patient do not indicate any threat to the public.
Staff should be trained to recognize impairment, disability and handicap, respond to the patient's needs, and work with his/ her initiative to overcome them.
Care after cure. Irrespective of chemotherapy, patients continue to develop impairments and are in need of care almost indefinitely. It is suggested that patients with the risk of, or with any grade of disability are entered into a separate register after release from treatment. This is to ensure that there is a mechanism in place for further follow up, if necessary. It will also ensure that the patients do not feel unwelcome to report when complications arise.
Rehabilitation services should progressively be integrated into general community services.
Leprosy rehabilitation personnel should strive toward "reverse integration" and teach colleagues in general health services the basic techniques known to work in leprosy.