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Keywords:

  • lymphatic filariasis;
  • descriptive system;
  • health domain;
  • severity levels;
  • physical;
  • psychosocial

Summary

  1. Top of page
  2. Summary
  3. Introduction
  4. Materials and methods
  5. Results
  6. Severity of the health state of hydrocele
  7. Discussion
  8. Acknowledgements
  9. References

Patients with lymphatic filariasis (LF) face considerable physical, psychological and social disabilities. Morbidity management and control are important components of the Global Programme to Eliminate Lymphatic Filariasis. But information on the various disabilities caused by LF is scanty. We measured the severity levels of seven health states of LF in the physical and psychosocial domains of health from the perspective of patients and medical experts, using a 7-domain 5-level (7D5L) descriptive system. Adenolymphangitis had the highest severity levels in all domains of health followed by lymphoedema grade 4 (L4), lymphoedema grade 3 (L3), hydrocele grade 2 (H2), lymphoedema grade 2 (L2), lymphoedema grade1 (L1) and hydrocele grade 1 (H1). People with higher grades of lymphoedema and hydrocele had more severe psychosocial problems than physical ones. Severity levels assessed by medical experts were lower than those reported by sufferers. These findings indicate that LF has considerable impact on the physical, mental and social domains of health. Morbidity management programmes should be broadened to include counselling, rehabilitation and health education to manage the psychosocial problems caused by LF.


Introduction

  1. Top of page
  2. Summary
  3. Introduction
  4. Materials and methods
  5. Results
  6. Severity of the health state of hydrocele
  7. Discussion
  8. Acknowledgements
  9. References

Lymphatic filariasis (LF) is a mosquito-borne disease caused by filarial parasitic worms, viz. Wuchereria bancrofti, Brugia malayi and B. timori (WHO 1992). In its most obvious manifestations, LF causes enlargement of the entire leg or arm, the genitals, vulva and breasts. The psychological and social stigma associated with these aspects of the disease is immense (WHO 1998). It is estimated that 120 million people are infected in around 80 countries throughout the tropics and subtropics (WHO 2000). The disease is found in urban and rural areas and affects people of all ages and both sexes, but particularly those of low socioeconomic status (Crompton et al. 2003).

The World Health Assembly resolved to eliminate this disease by 2020 (Resolution for the Global Programme for Elimination of Lymphatic Filariasis, GPELF). The GPELF aims to prevent disability through primary, secondary and tertiary prevention approach. Primary prevention of disability is achieved through interruption of transmission through Mass Drug Administration (MDA). Secondary prevention includes disease management to prevent its progression or worsening, through limb hygiene and skin care to prevent adenolymphangitis (ADL) attacks and reduce risk of lymphoedema progression (Pani & Lall 1998). Tertiary prevention measures include counselling of patients to help them cope with the psychological stress associated with disease and educating families and communities to allow them to fully participate in society (R. Houston and D. Addis 2004, personal communication).

As morbidity management and control are important components of filariasis elimination, it is essential to understand the severity of disability caused by LF in the physical and psychosocial domains of health. The economic burden due to the disease has been studied (Krishnamoorthy 1999; Ramaiah et al. 2000), but information on the social and psychological problems it causes is scanty (Suma & Shenoy 2003). Information on the severity levels of each stage of filariasis in the physical, mental and social domains of health is important for morbidity management. We attempted to describe seven health states of LF based on patients’ perception and medical experts’ assessment.

Materials and methods

  1. Top of page
  2. Summary
  3. Introduction
  4. Materials and methods
  5. Results
  6. Severity of the health state of hydrocele
  7. Discussion
  8. Acknowledgements
  9. References

Instrument used for the study

A 7-domain 5-level (7D5L) descriptive system which is an extended form of Euro QoL (5D3L) (Euroqol Group. EuroQol 1990) and 6D5L descriptive system used for Health State Valuation in Andhra Pradesh in India (Mahapatra et al. 2001) was used to describe a given health state. The seven domains are mobility, self-care, usual activity, pain, anxiety/depression, cognition and social participation. This 7D5L instrument is designed to assess the outcomes of the disease on physical, mental and social health. Physical health is assessed from domains of mobility, self-care, usual activity and pain or discomfort. Mobility includes walking, moving around in different locations, moving around using transportation, driving, etc. Self-care includes washing oneself, caring for body parts, toileting, dressing, eating, drinking and looking after one's health. Usual activity includes housework, acquisition of goods and services, caring for children and sick members of the family. Pain or discomfort includes localized pain and generalized pain. Mental health is assessed in terms of anxiety/depression and cognition. The social domain is assessed in terms of maintaining relationships, visiting/inviting relatives and friends, attending/hosting social functions, etc.

The severity levels of each domain, ranging from ‘no problem’ to ‘very severe problem’ were predefined and coded as: 1, no problem; 2, mild problem; 3, moderate problem; 4, severe problem; 5, very severe problem. A health state is described by a string of seven ordered digits. The position of the digit represents a particular domain and value of the digit represents the severity level. Positions in the ordered sequence of seven digits first to seven are respectively, mobility, self-care, usual activity, pain, anxiety/depression, cognition and social participation.

Health states

Measured health states were defined as follows. ADL: filarial fever, adenitis or ADL attacks or history of having these symptoms within a recall period of 1 month (Pani et al. 1995). Lymphoedema of limbs: pitting, reversible oedema (L1), non-pitting irreversible oedema with normal skin condition (L2), non-pitting, irreversible, oedema of skin thickened condition (L3), and grade 3 condition with papilomatous changes (L4). Hydrocele: hydrocele <15 cm diameter (H1) and hydrocele >15 cm diameter (H2).

Respondents

A door-to-door survey was carried out to detect filariasis patients in two endemic villages, Keddar and Alagramam in Villupuram district of Tamil Nadu following WHO classification criteria (WHO 1992). Of the 212 patients who were detected, 174 available at the time of interview were included in the study. These patients either had unilateral lower limb lymphoedema for a minimum period of 6 months, or acute ADL at the time of interview, or a history of ADL attacks (with a recall period of 30 days), or hydrocele. Each patient was classified based on the clinical symptoms. Basic information on the demographic and socioeconomic profile of the respondent was collected. The 7D5L instrument was administered and the patients were asked to state whether they experienced any of the predefined conditions to determine the level of severity. The most frequently reported severity level was taken to describe the given health state.

We also organized an interactive workshop with 15 experts from the fields of medicine, surgery, psychiatry, tuberculosis and chest diseases and public health. The experts were given a list of selected health states and asked to assess the health state by assigning severity levels across each domain using the 7D5L instrument. The most frequently stated severity level was assigned to each domain. Consensus was reached through debate if individual descriptions differed widely.

Ethical considerations

Informed written consent was obtained from each patient who had formal education before the interview. For those who had no formal education consent was obtained with the help of local volunteer. Confidentiality was maintained for the data obtained from them. They were also explained the purpose of the interview which was conducted in their domestic settings.

Results

  1. Top of page
  2. Summary
  3. Introduction
  4. Materials and methods
  5. Results
  6. Severity of the health state of hydrocele
  7. Discussion
  8. Acknowledgements
  9. References

A total of 174 patients who were clinically diagnosed as having different stages of filariasis (ADL n = 24, L1 n = 26, L2 n = 31, L3 n = 23, L4 n = 20, H1 n = 27, H2 n = 23) were interviewed; 84 were female (mean age 45.8) and 90 were male (mean age 40.8). Most had no formal education and were agricultural labourers (n = 55), farmers (n = 31), weavers and artisans (n = 17), government employees (n = 8) or unemployed (n = 63).

Each health state of LF had different severity levels and affected the physical, mental and social domains of the individual differently. Disabilities in the physical domain lead to mental and social problems: the higher the level of physical disability, the higher the severity of mental and social problems.

Severity of the health state of ADL

Patients and experts ranked the health states similarly in the order of severity. The health state of ADL was ranked highest in all domains of health, followed by L4, L3, H2, L2, L1 and H1. Although the ranking was similar, the severity values assigned to each health state by the experts were lower (except pain) than values given by sufferers (Table 1).

Table 1.  Severity levels of different domains perceived by patients and experts
Health statesPhysical domainsMental domainsSocial domains7-Domain 5-level code (7D5L)
MobilitySelf-careUsual activitiesPainAnxiety/ depressionCognitionSocial participationPatientsExperts
PatientsExpertsPatientsExpertsPatientsExpertsPatientsExpertsPatientsExpertsPatientsExpertsPatientsExperts
  1. 1, No problem; 2, mild problem; 3, moderate problem; 4, severe problem; 5, very severe problem.

Adenolymphangitis (ADL)5453545553435455555454345334
Lymphoedema grade 1 (L1)2111212212111121221111112211
Lymphoedema grade 2 (L2)2121212222212222222221112212
Lymphoedema grade 3 (L3)3232323232313333333332222213
Lymphoedema grade 4 (L4)3332534343425433544453233324
Hydrocele grade 1 (H1)1111211221112111212121112111
Hydrocele grade 2 (H2)2211321232123221313132122222

In the health state of ADL, mobility was very severely affected; patients were unable to walk or move around and were confined to bed. Self-care activities were very severely affected; patients depended on family members for personal care. Usual activities of the patient at home and working place were very severely affected because of total physical incapacitation. Pain was very severe in this health state caused by inflammation of lymph nodes. Anxiety/depression was very severe in this health state. The suffering during each ADL episode in terms of physical disability, pain, loss of work and earnings, expenditure for treatment, and dependency on others caused severe anxiety/depression to the patient. Many patients said they even thought of giving up their lives rather than endure the agony. Because of very high fever with rigour and chills, ADL patients are delirious, with temporarily severely impaired cognitive ability. Social participation was very severely affected and effectively stopped during ADL attacks as the patients were bedridden, and after suffering a week's agonizing pain and fever had to wait for another week or more to regain health. The experts also rated the health state of ADL as having the highest level of severity in all domains of health.

When interviewing ADL patients, we came across a 44-year-old female casual labourer who had been experiencing ADL attacks for 7 years. Her right arm was bandaged and her hand suspended in a sling. On enquiry she said:

Two weeks ago I visited a relative in a village nearly 10 km away from our village. I went in the morning and had planned to return by evening. I was perfectly all right when I left my home. In the evening while I was waiting at the bus stop, to my shock I sensed a sudden shivering and shuddering creep all over my body. I knew it was another ADL attack. My head started reeling, I lost balance, fell down and broke my arm! People nearby took me back to my relative's house. I had to stay there for a whole week till I was able to move or travel. I felt very uneasy for causing unnecessary trouble for my relatives as well as my family members. Because of these unexpected attacks I am afraid to go anywhere unaccompanied. No one knows when and where it will occur!

A 30-year-old casual labourer who pulls cartloads of goods in markets said he gets frequent ADL attacks at work:

At the day's start I will be perfectly alright. On certain days, suddenly shivering will start while I am transporting heavy loads from the cart to the shops. I will fall down wherever I am. Since it recurs very often, people in the market will have a second thought before engaging me for the day's work. It causes lot of anxiety for me always. Unlike other people I am not able to work hard, for fear of these attacks.

Severity of the health states of lymphoedema

The severity of health states rises with later stages of the disease. The severity of the health state of L4 was greater than the lower grades of lymphoedema. Individuals in this health state said they had moderate mobility problems, because walking was difficult with stiff and swollen legs. A 31-year-old woman said:

I can't walk normally because of the weight and size of my elephantoid leg. It is swollen from the thigh downwards. I have to drag my legs slowly for moving within the house and use a two wheeler for going out.

A 30-year-old male said:

In spite of taking medicine regularly, excessive walking or travelling will lead to ADL attacks. So I restrict walking.

There were moderate problems in the domain of self-care. Stiffness and pain of the elephantoid leg made self-care difficult. Sitting down and getting up in the toilet was extremely painful and difficult for the patients. The domain of usual activities in the workplace or at home was very severely affected in this health state. Strenuous physical labour and long hours of standing aggravated pain and swelling of legs. They had to completely give up their occupation or change to less strenuous work that earned only nominal wages. A 56-year-old casual labourer said, ‘Daily I peel 1000 coconuts and earn Rs. 100. If I peel more than 1000 coconuts at a time, I will get ADL attacks.’ A 67-year-old male said, ‘No one will call me for work because of this ailment.’ A 31-year-old housewife stated that ‘I cannot do domestic jobs at a stretch like other ladies, I have to rest in-between.’ Patients in this health state experienced very severe pain. One patient said, ‘When I think of enduring this pain for the rest of my life, I feel like taking sleeping pills and putting an end to my life.’

Physical incapacitation, loss of earnings and/or work, dependency on others and shame due to deformity caused severe anxiety/depression. Most patients remained detached and isolated from others. A young grade 4 lymphoedema patient said, ‘my husband and in-laws hate me now. They say I ruined their lives. I always think of committing suicide.’ Another woman aged 40 ‘didn't get married because of this cursed disease.’ A 52-year-old mother lamented that ‘because of my elephantoid leg no match was made for my daughter. She is 30 years old now and still unmarried.’

Anxiety/depression made the patients dull and preoccupied with disturbing thoughts. They were absent-minded, disinterested and unable to concentrate on anything for long time. This led to severe cognitive problems. A young lymphoedema patient said, ‘Because of disturbing thoughts about my disability, I have lost interest in anything. I can't concentrate on any activity anymore.’

The domain of social life of the patient was also very severely affected. Because of physical incapacitation, stigma and shame associated with the gross disfiguration, the patients in this health state totally avoided all social activities. One patient said, ‘I won't even go to the nearby junction because I am feel ashamed.’ Another patient said, ‘I am physically and mentally broken due to this disease and totally avoid all social activities.’ The experts also ranked L4 next to ADL in terms of severity; they rated patients as exhibiting restricted mobility, self-care and usual activity; a tendency to irritation; low general performance; and avoidance of social activities as far as possible.

From the patient's perspective, L3 had moderate problems in all domains of health. Mobility was restricted. Most of the patients said they experienced severe hip pain if they walked more than 2 km, forcing them to restrict walking. Self-care was difficult, and only essential needs self-met. Occupation was moderately affected. A 38-year-old respondent said, ‘I was working as a mason's assistant. But strenuous work caused frequent ADL attacks and I had to leave work.’ Patients experienced moderate pain, and the physical disabilities caused moderate anxiety and cognitive problems. Social activities were also restricted. One respondent said, ‘I attend only death ceremonies. There no one will tease me.’ The experts rated mild severity in the physical and mental domains and moderate severity in the domain of social participation.

Patients with L2 perceived mild problems in all domains of health. Mobility, self-care and usual activities were difficult, but not restricted. Mild pain did not interfere with routine activities. This health state caused mild anxiety/depression. One person said, ‘Fellow workers will always tease and make fun of me. I feel irritated and dejected for some time.’ A 42-year-old woman said that because of her health state she was anxious about her daughter's marriage. She stated that people do not even rent their houses to filarial patients. According to the experts, there was no problem in physical domains of health, but a minor problem in the mental and social domain of health.

L1 patients experienced minor problems in the domain of physical health. The domains of mental and social health were not affected. Patients had mild problems with mobility and usual activity and experienced mild pain when the swelling was aggravated because of physical activity. From the experts’ perception this health state did not cause any problems in mobility, self-care or usual activities. According to them there was mild pain that did not interfere with routine activities but caused mild anxiety.

Severity of the health state of hydrocele

  1. Top of page
  2. Summary
  3. Introduction
  4. Materials and methods
  5. Results
  6. Severity of the health state of hydrocele
  7. Discussion
  8. Acknowledgements
  9. References

Patients and experts ranked the health state of H2 next to L3 in terms of severity. According to patients there was a mild problem in mobility: patients had difficulty walking and cycling because of the swollen scrotum, and excessive movement resulted in a burning sensation. A 59-year-old respondent said ‘While walking, I have a feeling that it (scrotum) is coming down and unconsciously hold up the abdominal muscles. I have the same feeling when I cycle also. Because of this fear, I restrict walking and don't do cycling.’ H2 patients had to restrict their usual activities at home and at work. Hectic work increased the scrotal swelling, and pain. Respondents said that after strenuous work their waist became stiff and slimy water passed out of the scrotum. A 50-year-old weaver said, ‘A healthy person can weave two dhotis in one day whereas I can weave only one dhoti in two days.’ Persons engaged in agricultural activities like tilling and plowing said they had to switch to less strenuous and less remunerative activities like weeding, sowing, manuring, etc. Most respondents said while sleeping they could not lie on the side because the scrotal swelling would hurt. Married respondents said their sexual life was affected. A 31 year old agricultural labourer said ‘after a day's work, swelling and pain increase during the evening. Because of the pain and discomfort I don't have the desire.’ The physical disability, problems in performing usual activities and the shame associated with the deformity caused moderate anxiety/depression to the patient. A 26-year-old man was disqualified for the selection of police constable, due to hydrocele. The patients in this health state had moderate problems in social activities, which they restricted. A young man said, ‘I won't join my friends in taking bath in the village pond for fear of exposing the swelling.’ The expert thought that the health state of H2 caused mild problems in the physical, mental and social domains of health.

The health state of H1, according to the patients, had mild effects on usual activities. A 45-year-old fish vendor said ‘After a full day's fish vending in cycle, I develop pain and swelling in the evening. I want to get it operated but am hesitating for want of money and fear.’ This health state caused mild anxiety also. A married young man said his sexual life was affected because of this health state: ‘After intercourse, I have pain that lasts for half an hour to one hour.’ H1 had mild effects on social participation. Many respondents hesitated to take part in social activities. They believed that travelling and certain food items served during feasts aggravated pain and swelling. According to the experts the mental and social domains of the patients in the health state of HI were not affected at all. In the physical domain they had mild pain that did not interfere with routine work.

Discussion

  1. Top of page
  2. Summary
  3. Introduction
  4. Materials and methods
  5. Results
  6. Severity of the health state of hydrocele
  7. Discussion
  8. Acknowledgements
  9. References

The global LF elimination programme incorporates transmission control along with morbidity management to ensure a visible impact on those affected by the disease (Shenoy 2002). The physical disabilities caused by LF are mainly due to the secondary infections leading to repeated ADL attacks. Therefore foot care aimed at the prevention of secondary bacterial infections is the mainstay of disability alleviation programmes (Suma & Shenoy 2002). This involves simple, effective hygiene measures such as frequent washing with soap and water and regular exercising of the limbs (R. Houston and D. Addis, personal communication).

In addition to the physical problems it causes, this profoundly disabling disease has serious psychological and social consequences (WHO 1997). While the physical disabilities are quite visible, the psychosocial disabilities caused by LF went unrecognized by public health experts because of poor understanding and lack of information. Recently, there has been growing interest in the role of mental and social health in promoting positive health and good quality of life. Disease or ill health strains the social, cultural, technological, economic, political, legal, health and welfare systems of a society (Pokarna 1994). Our study throws light on the impact of the different health states of LF on the physical, and psychosocial domains of health of the affected individual.

Traditionally outcomes in medicine and health care have largely been determined by objective medical evaluation. Recently it has become clear that the perspective of the patient is also a critical variable. As a result, emphasis has shifted gradually towards including evaluations of medical/health-related outcomes from the patient's perspective (Kevin 2004). We attempted to look into the impact of the acute and chronic health states of filariasis on the physical, mental and social life of the individual from the perspectives of the actual sufferers and the medical experts. Analysis of the severity levels perceived by the people with different manifestations in relation to occupation or with different work showed that there was no appreciable difference in the severity levels perceived by the respondents in relation to occupation. The major classes of occupation considered in the analysis were casual labourers, agricultural workers, weavers and artisans, housewives, unemployed, salaried and business people. The average severity score on the scale of 0–28 and irrespective of the domains was found to range from 25 to 26.8 for ADL, 9.2 to 12.4 for lymphoedema and 6.67 to 8.43 for hydrocele respectively. Similarly gender did not influence the perceived severity levels.

The experts assigned lower severity levels than the sufferers, indicating that experts are able to perceive the extent of disability to a certain extent only. Only the patients can assess the exact level of severity, and their perception should be considered in planning and implementing morbidity management programmes for LF.

Until recently it was believed that the permanent disabilities caused by lymphoedema and hydrocele caused severe disability to the individual. But this study shows that, though suffering was temporary, the severity of disabilities caused by ADL was greatest. The physical domain was affected by hampered mobility, difficulty in self-care, and loss of work or change of work resulting in no earnings or fewer earnings. Pain and discomfort interfered with all activities. Physical incapacitation in the most productive stage of life, financial problems, dependency on others, inability to marry and lead a normal life gradually affect the mental health of the individual and lead to anxiety/depression. Anxiety is considered abnormal when it is interfering with everyday activities like going to work or socializing. Excessive anxiety is often associated with other psychiatric conditions such as depression, insomnia, irritability or anger and inability to concentrate were some of the symptoms of anxiety seen among the LF patients during this study.

Higher grades of lymphoedema and hydrocele interfered with the social life of the individual. Patients with large hydroceles or elephantoid legs with massive skin folds and dreadful odour were victims of teasing and social stigmatization. Individuals with gross deformity were dejected, avoided all social activities and led an isolated life within the family. Individuals with lower grades of lymphoedema restricted their social activities to essential and unavoidable contacts, for fear of inadvertently eating foods that would induce ADL attacks, concern about ADL attacks after long hours of travel and shame of exposing the deformity. Sons and daughters of LF patients had difficulty in getting suitable marriage proposals. It was also noticed that house owners were reluctant to rent their houses to LF patients.

These findings highlight the urgent need to broaden the scope of the existing morbidity management programme to include measures to lessen the sufferings in the psychosocial domains of health. We feel that counselling and rehabilitation of patients and health education to the community can lessen the psychosocial as well as physical burden caused by LF.

A study on hydrocele patients revealed that many hydrocele patients who wanted to undergo surgery were hesitant to go to hospital because of the fear of ‘temporary death’ while under anaesthesia and because of the cost of surgery (Gyapong et al. 2000). LF patients with gross deformity caused by lymphoedema and hydrocele could benefit from counselling not only to come to terms with the deformity, but also to overcome fear and undergo necessary treatment.

Rehabilitation of LF patients is another measure suggested by this study to reduce the physical as well as psychosocial burden due to the disease. LF patients need to be re-educated to adjust to the effects of the illness and treatments (such as medication) on their social and occupational functioning. Earlier studies have shown that absenteeism because of frequent ADL episodes, social stigma and shame associated with lymphoedema and hydrocele compelled many students with LF to give up education or led to poor educational achievements (Ramaiah et al. 2000). LF affects the economic activity of the productive age group in the form of working few hours, altered activity, changing jobs and stopping work (Ramaiah et al. 1997). We observed that young LF patients need provision for uninterrupted education. Those who had to change their jobs or leave their jobs should have the opportunity to engage in less strenuous home-based industries or handicrafts that could be performed in a dry and hygienic environment. These measures will help to make the patient feel independent and give them new hope for the future. While the above measures can improve the mental health of the affected individuals, their social health can be improved through educating the community on filariasis.

The root cause of the stigma and social isolation of LF patient is the ignorance of the community about the disease. Patients, their families and the community are generally unaware of the cause of the disease and control measures. In endemic areas the community should be taught how to reduce infections and also to help those who are already suffering due to the disease (Davies 1975). Health education in endemic areas will also help to increase drug consumption during MDA and achieve vector control through environmental management.

To conclude, we demonstrated the different severity levels of each health state of LF, and showed that specific health states of filariasis have considerable influence on the physical and psychosocial domains of health of the individual. We suggest that due importance should be given to the hitherto neglected psychosocial effects of LF. Efforts should be made to widen the scope of the existing morbidity management programmes to include measures to lessen the psychosocial burden also.

Acknowledgements

  1. Top of page
  2. Summary
  3. Introduction
  4. Materials and methods
  5. Results
  6. Severity of the health state of hydrocele
  7. Discussion
  8. Acknowledgements
  9. References

The authors are grateful to Dr P.K. Das, Director, Vector Control Research Centre, Pondicherry for his constant support and encouragement. We thank Dr Ravi Rangachary, Deputy Director (SG), for his guidance and critical review of the manuscript. We express our sincere thanks to the medical professionals and the filariasis patients who participated in this study.

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  1. Top of page
  2. Summary
  3. Introduction
  4. Materials and methods
  5. Results
  6. Severity of the health state of hydrocele
  7. Discussion
  8. Acknowledgements
  9. References
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