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Perspectives of Elephantiasis in an Endemic Area of Brazil

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Perspectives of Elephantiasis in an Endemic Area of Brazil Clinical RESEARCH/AUDIT Perspectives of elephantiasis in an endemic area of brazil Gerusa Dreyer, Denise Mattos Abstract Background: The most advanced form of lymphoedema, known as elephantiasis, is one of the most distressing clinical presentations of lymphatic filariasis. Aims: The objective of this study was to explore women’s experiences of elephantiasis. Methods: This study was conducted at the Center for Teaching, Research and Tertiary Referral for Bancroftian Filariasis (NEPAF) in Recife, Brazil. Ten open-ended questions prompted each subject to respond freely about their disease. Results: The content of the responses that was common to all 28 participants were grouped into nine themes, the most prominent being: patients referring to their disease as filariasis; the tremendous physical and emotional suffering that accompanied acute episodes; discouragement and hopelessness on hearing from physicians that ‘filarial swollen leg’ was an ‘unavoidable disease’; poor access to medical assistance and drug treatments, particularly during acute episodes; the substantial negative effect of elephantiasis on daily life; and societal discrimination. Conclusions: There was a strong consensus from women with elephantiasis regarding their needs, perceptions of their condition, its treatment and its impact on their lives. Conflict of interest: The study was supported by the Amaury Coutinho Non- Governmental Organization, Recife, Brazil. among the estimated 100 million areas. As part of a broader study to Key words and 20 million people infected with capture the life history of patients Wuchereria bancrofti and Brugia living in bancroftian filariasis-endemic Elephantiasis species, respectively (Michael et al, areas (Mattos and Dreyer 2006b), the Bancroftian filariasis 1996). authors have explored the feelings and Lymphatic filariasis experiences reported by women with Patients’ experiences In 2000, Dreyer et al demonstrated elephantiasis of the lower limb. Access to medical services that overt clinical disease in bancroftian filariasis is a multifactorial Methods process and, in the case of Setting lymphoedema, bacterial superinfection The study took place at a public is a key element for disease tertiary referral service for ne of the most distressing progression. This theory is supported bancroftian filariasis (NEPAF), located clinical presentations of by numerous studies (Shenoy et al, at the Hospital das Clinicas at the Olymphatic dysfunction in 1995, 1999; Olszewski, 1996; Olszewski Federal University of Pernambuco in lymphatic filariasis (LF) in endemic et al, 1997; Dreyer et al, 1999). It is Recife, Brazil. areas is advanced lymphoedema, or now accepted that avoiding recurrence elephantiasis. The estimated prevalence of such bacterial infections can Data collection of patients with elephantiasis living in prevent the disease from progressing Following approval by the ethics the 83 LF-endemic countries (World to elephantiasis. There is a possibility committee of Hospital das Clinicas, Health Organization [WHO], 2005b) for thousands of individuals with women with elephantiasis of the lower is unknown. It has been reported that subclinical lymphatic damage or limbs who had agreed to participate there are about 16 million patients incipient disease to prevent the in the study were recruited and suffering from all stages of filarial recurrent acute episode through low- signed informed consent forms were lymphoedema (Jamal and Pani, 2000) cost morbidity control programmes obtained. Patients were either referred (Addiss and Mackenzie, 2004). to NEPAF or directly sought assistance Gerusa Dreyer is Consultant in Lymphatic Filariasis at NGO themselves. Amaury Coutinho, Brazil and Denise Mattos is a Social Many aspects of this condition Worker at Servico Social, Hospital das Clinicas, Universidade remain poorly understood — as Inclusion criteria Federal de Pernambuco, Recife-PE, Brazil does its actual prevalence in endemic Participants were included if they: 24 Journal of Lymphoedema, 2007, Vol 2, No 1 GerusaNRindd 2 19/3/07 10:14:34 Clinical RESEARCH/AUDIT 8 Were females with lower limb encouraged to respond freely to the question if the participant kept elephantiasis (either uni- open-ended questions presented by repeating, or when it was apparent or bilateral) the interviewer. They were informed that she had said all she wanted to. 8 Were 19 years of age or older that they could end the process at any Following the interview, patients were 8 Were willing to participate in the time. The questions they were asked invited to have refreshments. After study and signed the informed were: that, those without offensive odour of consent forms 8 What disease do you have? the leg underwent medical and social 8 Were new patients at NEPAF and 8 How did your disease begin? consultations. had no experience of the Hope 8 How did it progress? Clubs support groups for patients 8 What makes your disease worse? Those with an offensive odour with chronic diasease living in LF- 8 What information did you get from were evaluated for initial antibiotic endemic areas (Dreyer and Addiss, the doctors about your disease? therapy before the first hygiene 2000; Dreyer et al, 2006b). 8 What kind of treatment have you session. During this session the leg’s sought/received? status was assessed for cleanliness. Exclusion criteria 8 What do you think about the care Patients were taught how to carry Patients were not eligible for the study provided by the public health out their own hygiene regimen and if they: system to patients with your were corrected, where needed, on 8 Had an acute bacterial episode or disease? their skin care (from washing to venous ulcers at the time of first 8 What problems and/or barriers do applying the medicated cream and/or consultation you face because of the disease? KMnO4 [potassium permanganate]). 8 Had a history of venous ulcers 8 What makes your life easier? The patients were also started on the 8 Had lymphoedema of the upper 8 Would you be willing to have ‘self-skin’ care programme. They then limbs with or without a history another consultation to talk about had time to practice at home and of mastectomy your life history? to identify any difficulties (including 8 Had undergone surgery for their own situation, such as lack of lymphoedema clean water) before the medical and 8 Had any other medical condition Those with an offensive social consultation a few days later that contraindicates the study odour were evaluated for at NEPAF, when any problems they (such as mental incapacity, chronic initial antibiotic therapy had experienced could be addressed. depression, renal failure, cancer, before the first hygiene The physical examination of the alcohol addiction, severe liver session. During this interdigital lesions is also easier if the disease, leprosy, type 1 diabetes session the leg’s status was patient’s leg has been cleansed and mellitus or type 2 diabetes which assessed for cleanliness. there is less odour. had progressed to require insulin) Patients were taught how 8 Had refused to participate in to carry out their own Audiotapes of the interviews were the study hygiene regimen... transcribed and were then printed 8 Had prior knowledge of the out and re-checked against the audio content of the study through and corrected if necessary. This was interaction with patients who had All interviews were conducted done by two different people, both already been included in it. by one investigator (GD) and were of whom had not been involved in limited to one hour. The interviewer the interviews. The audiotapes were Diagnosis took care to avoid introducing anonymised and coded by a number The seven stages of lymphoedema phrases or words which might bias from one to 28. The transcripts were described by Dreyer et al (2002a) the participants’ responses, such as checked for words which might were used as diagnostic criteria. acute episode, bad odour, prejudice, have introduced bias. The printed Those patients with lymphoedema at benefits from the government, filariasis, documents were independently stage 5 and above were diagnosed antifilarial treatment, free medication analysed by the two authors. Those with elephantiasis. and benzathine penicillin. topics that were recognised by both analysts as being raised by all Study design Prompts on the part of the participants were categorised into To avoid potential bias through interviewer were limited to eliciting themes. The authors also noted other exposure to other study subjects, each responses and clarifying points (both topics reported by a number of patient was scheduled to arrive at for the participants and for the patients that were considered relevant NEPAF so as to not encounter other interviewer); for example, ‘Can you and/or interesting. patients in the waiting room. Before repeat, please?’ ‘Can you say that in a routine medical consultation and a different way?’ ‘Is there anything Results social interview and after informed else you would like to add?’. The Twenty-eight women with consent, the participants were interviewer proceeded to the next elephantiasis participated in the Journal of Lymphoedema, 2007, Vol 2, No 1 25 GerusaNRindd 3 19/3/07 10:14:34 Clinical RESEARCH/AUDIT study. Demographic and medical from non-endemic and 17 from information related to the participants endemic areas — received several was obtained from their medical full courses of antifilarial treatment charts (see Table 1 and Figures 1 with diethylcarbamazine after and 2). When assessing the quality presenting with chronic
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