14
views
0
recommends
+1 Recommend
1 collections
    0
    shares
      • Record: found
      • Abstract: found
      • Article: found
      Is Open Access

      The wider societal benefits of surgical interventions for lymphatic filariasis morbidity management and disability prevention

      research-article

      Read this article at

      Bookmark
          There is no author summary for this article yet. Authors can add summaries to their articles on ScienceOpen to make them more accessible to a non-specialist audience.

          Abstract

          Introduction Lymphatic filariasis (LF) is targeted for global elimination as a public health problem by interrupting transmission with mass drug administration and providing an essential package of care to people affected by the debilitating lymphedema and hydrocoele conditions [1]. In recent years, many LF endemic countries have scaled up their morbidity management and disability prevention (MMDP) programmes with a new focus on universal health coverage, primary healthcare strengthening, and integrated management of skin neglected tropical diseases (NTDs), with the aim of fully integrating quality services for LF MMDP into national health systems to ensure sustainability [2]. The positive impact of MMDP interventions for patients has been documented [3–6]; however, no research has been conducted on the wider societal benefits, including the impact on the people who care for patients, i.e., caregivers. Ton and colleagues [7] calculated that the burden of depressive illness in LF patient caregivers was 229,537 disability-adjusted life years (DALYs). Other studies have documented a negative socioeconomic impact on the caregivers of people affected by filarial and nonfilarial leg lymphedema and those who experience painful secondary bacterial infections, acute adenolymphangitis [8–10]. Hydrocoele is the most common LF clinical manifestation, which affects approximately 19 million men worldwide and can be cured by surgery [11]. In Malawi, recent large-scale patient mapping and modelling estimate that at least 14,000 men have hydrocoele across the country. In 2015, surgical campaigns were initiated to address the burden, together with a study to highlight the significant positive impact of surgery on men in highly endemic areas [4]. We advocate that the positive impact of this surgical intervention can extend beyond the patient to include their caregivers, who are likely to be family members (predominately female) and have their own time, work, and quality of life affected. Evidence from the field Ethics statement Ethical approval was obtained from the Malawi National Health Sciences Research Committee (Protocol 15/3/1406) and the Liverpool School of Tropical Medicine Research Ethics Committee (Protocol 15.047). All adult participants provided written informed consent; no children participated in the study. Methods To provide evidence of the wider societal benefits of surgical intervention, we extended the study in Malawi by Betts and colleagues [4] to include a small retrospective survey on caregivers, 6 months postsurgical intervention, to better understand their (i) characteristics and relationship to the hydrocoele patient; (ii) level of assistance provided: number and type of physical activities they assisted with; (iii) impact on time and work: number of days per month they provided care and took off work; (iv) impact on the quality of life in relation to their usual activities (3 questions), social issues (3 questions), and psychological health (4 questions) using a similar scale-based scoring system, adapted from the Lymphatic Filariasis Quality of Life Questionnaire (LFSQQ) [12,13] to quantify problems, i.e., no problem = 0, mild = 1, moderate = 2, and severe = 3, with individual total scores ranging from 0 = no problem to 30 = severe problem in all 10 questions. Average scores for each question across the 3 domains were also calculated. All questions were asked twice by a trained field research team member: first for the caregiver to recall the situation presurgery when the patient had his hydrocoele and second to state the situation postsurgery after the patient’s recovery. Caregivers were also asked if they provided additional care during the recovery period immediately after surgery, the number of days they provided additional care, and time taken off work during the recovery period. Results Caregiver characteristics We surveyed 40 randomly selected caregivers. The majority were female (75%); median age 36 years (female 39 years; male 27 years); approximately half had no schooling and were illiterate (55%), and one-third (35%) had primary school level education. Most caregivers were wives (65%) of the patient. Other female caregivers included daughters (n = 2), a granddaughter (n = 1), and a sister (n = 1). Male caregivers included brothers (n = 3), fathers (n = 2), sons (n = 3), a grandson, (n = 1), and a cousin (n = 1), thus highlighting the wide involvement of the extended family. Assisted activities The number of physical activities the caregivers assisted the patient with pre- and postsurgery is summarised in Table 1. Presurgery, 11 (27.5%) caregivers reported that they provided no additional physical help on a specific activity for the patient, which increased nearly 3-fold postsurgery to 31 (77.5%). Presurgery, 17 (42.5%) caregivers assisted with 3 or more activities to patients, which decreased postsurgery to 5 (12.5%) caregivers. 10.1371/journal.pntd.0009701.t001 Table 1 Level of assistance caregivers provided to patients pre- and postsurgery. Number of activities assisted Presurgery Postsurgery n % n % No assistance needed 11 27.5% 31 77.5% 1 activity 5 12.5% 2 5.0% 2 activities 7 17.5% 2 5.0% 3 activities 5 12.5% 2 5.0% 4 activities 3 7.5% 1 2.5% 5 activities 6 15.0% 0 0.0% 6 activities 2 5.0% 2 5.0% 7 activities 1 2.5% 0 0.0% Total 40 40 Presurgery, the activities that caregivers (n = 29; 72.5%) physically assisted with most frequently included farming (n = 24; 82.8%), cooking (n = 21; 72.4%), cleaning (n = 15; 51.7%), laundry (n = 12; 41.4%), and least frequently shopping and fishing (n = 1; 3.4%). When considering male caregivers only who provided care presurgery (n = 8; 80%), the majority reported assisting with farming (n = 6; 75.0%) followed by cooking (n = 4; 50%), suggesting that male caregivers were not more likely to assist with certain activities, compared with female caregivers. However, given the small sample size, further data are needed to understand the implications of gender on caregiving responsibilities. Postsurgery, across all tasks, fewer caregivers stated that they provided assistance with each specific task as shown in Fig 1. 10.1371/journal.pntd.0009701.g001 Fig 1 The types of activities caregivers assisted the patient with pre- and postsurgery. Impact on time and work Presurgery, caregivers (n = 29) assisted the patient with physical activities for an average of 25.3 days per month or a total of 733.0 caregiver days. Postsurgery, only 5 caregivers continued to assist with activities for an average of 26.2 days per month or a total of 131.0 caregiver days. Presurgery, the caregivers were unable to go to work due to caring responsibilities for an average was 8.2 days per month. Postsurgery, no caregivers took time off work to assist the patient. During the initial recovery period postsurgery, 20 caregivers provided additional help. This recovery period lasted an average of 30.8 days postsurgery, with caregivers providing care for an average of 24.7 days or a total of 494 caregiver days. During this recovery period, 18 (90%) of the 20 caregivers were unable to work for an average of 13.7 days. Quality of life Presurgery, the majority of caregivers reported mild, moderate, or severe problems when supporting the hydrocoele patients, with individual overall quality of life scores ranging from 0 to 17. Average scores for questions on usual activities ranged 0.6 to 0.95, social issues 0.4 to 0.575, and psychological health 0.325 to 0.625. A summary of presurgery proportions of problem level for each question is below and included in S1 Table. Postsurgery, all caregivers, except 2 (question on their own job), reported that they no longer had problems, with scores decreasing significantly to 0 (paired t test; p < 0.05). The significant changes pre- and postsurgery are visually highlighted in colour coded Fig 2 and differences in average scores in S1 Table. 10.1371/journal.pntd.0009701.g002 Fig 2 Quality of life responses across 3 domains colour coded by the level of problem caregivers’ experiences presurgery and postsurgery. Presurgery summaries Usual activities: Did helping cause problems in doing your (1) own job (mild 47.5%, moderate 20%, and severe 2.5% problem), (2) own household activities (mild 50% and moderate 17.5%), and (3) usual leisure activities (mild 45% and moderate 7.5%)? Social issues: Did you have a problem with (1) joining in regular social activities outside your home (mild 37.5% and moderate 10%), (2) inside your home (mild 40% and moderate 15%), or (3) your romantic relationships (mild 20% and moderate 10%)? Psychological health: Did you feel (1) worried about your own health (mild 17.5% and moderate 20%), (2) your future (mild 22.5% and moderate 20%), (3) neglected by friends and family members (mild 35% and moderate 12.5%), and (4) unable to make plans for the future (mild 22.5% and moderate 5%)? Quotes Caregivers provided additional comments on the positive changes to their lives following the patient’s surgery: He is able to work, and we are working together to help the home (wife, 45 years). He helps with household work now (wife, 21 years). He is able to take care of me as a husband now (wife, 24 years). Now, he is able to satisfy me sexually (wife, 36 years). Now, we are able to face the community with no shame since my father is well (daughter, 23 years). My friends stopped laughing at me (son, 19 years). I am no longer worried about the future (wife, 36 years). Conclusions These preliminary data on caregivers highlight the wider burden of filariasis morbidity on families and endemic communities if left untreated. Like the struggles that patients face before interventions, caregivers have their daily living activities, own time, and ability to work negatively affected by providing additional assistance on a range of tasks in and around the home. Further, there was a negative psychosocial impact, with caregivers’ friendships and intimate relationships thwarted, and many felt neglected, shamed, and concerned for the future [7,14]. Importantly, these preliminary data highlight the significant positive change that a surgical intervention can have on many aspects of caregivers’ lives, especially female family members. This has additional wide-ranging societal and economic benefits. It helps to address gender inequalities, which have been highlighted with lymphedema [10], and are vital to making progress towards the Sustainable Development Goal 5, in recognising and valuing unpaid care and domestic work [15]. It also suggests that the high benefit–cost ratio of 24.5 of surgery recently calculated for hydrocoele patients by Sawers and colleagues [16] could potentially be doubled if caregivers’ postsurgery economic productivity was included in the calculations. This highlights the value of this intervention, and a clear message of “buy 1 surgery and get 2 people back to work” may convince international donors and ministries of health to continue to invest. For example, in Malawi, this would mean that at least 28,000 people would benefit from 14,000 surgeries. Therefore, we advocate that the continued support and scale-up of LF MMDP activities will have comprehensive physical, social, psychological, and economic benefits to patients, their families, and the endemic communities in which they live. This will further help national elimination programmes address the requirements of universal healthcare as part of WHO NTD Road Map, help families and communities get out of the poverty cycle, and ensure that no one is left behind [1]. Supporting information S1 Table Summary of the frequency, percentage, and mean of domain scores of the 40 caregivers pre- and postsurgery. (DOCX) Click here for additional data file.

          Related collections

          Most cited references12

          • Record: found
          • Abstract: found
          • Article: found
          Is Open Access

          The burden of mental health in lymphatic filariasis

          Background Neglected Tropical Diseases (NTDs) afflict around one billion individuals in the poorest parts of the world with many more at risk. Lymphatic filariasis is one of the most prevalent of the infections and causes significant morbidity in those who suffer the clinical conditions, particularly lymphedema and hydrocele. Depressive illness has been recognised as a prevalent disability in those with the disease because of the stigmatising nature of the condition. No estimates of the burden of depressive illness of any neglected tropical disease have been undertaken to date despite the recognition that such diseases have major consequences for mental health not only for patients but also their caregivers. Methods We developed a mathematical model to calculate the burden of Disability- Adjusted Life Years (DALY) attributable to depressive illness in lymphatic filariasis and that of their caregivers using standard methods for calculating DALYs. Estimates of numbers with clinical disease was based on published estimates in 2012 and the numbers with depressive illness from the available literature. Results We calculated that the burden of depressive illness in filariasis patients was 5.09 million disability-adjusted life years (DALYs) and 229,537 DALYs attributable to their caregivers. These figures are around twice that of 2.78 million DALYs attributed to filariasis by the Global Burden of Disease study of 2010. Conclusions Lymphatic filariasis and other neglected tropical diseases, notably Buruli Ulcer, cutaneous leishmaniasis, leprosy, yaws, onchocerciasis and trachoma cause significant co morbidity associated with mental illness in patients. Studies to assess the prevalence of the burden of this co-morbidity should be incorporated into any future assessment of the Global Burden of neglected tropical diseases. The prevalence of depressive illness in caregivers who support those who suffer from these conditions is required. Such assessments are critical for neglected tropical diseases which have such a huge global prevalence and thus will contribute a significant burden of co-morbidity attributable to mental illness. Electronic supplementary material The online version of this article (doi:10.1186/s40249-015-0068-7) contains supplementary material, which is available to authorized users.
            Bookmark
            • Record: found
            • Abstract: found
            • Article: not found

            Neglected tropical diseases and mental health: a perspective on comorbidity.

            Mental health conditions will be the largest contributor to the global health burden by 2030. Our review suggests that neglected tropical diseases (NTDs) predispose individuals to poor mental health. Factors predisposing to poor mental health include stigma and discrimination, exclusion from participating fully in society, reduced access to health and social services, lack of educational opportunities, exclusion from income-generation and employment opportunities, and restrictions in exercising civil and political rights. These characteristics are all features of NTDs, but the mental health of these sufferers has been ignored. This review raises an issue of concern and highlights the opportunities for research by psychiatrists and psychologists on NTDs. Copyright © 2012 Elsevier Ltd. All rights reserved.
              Bookmark
              • Record: found
              • Abstract: found
              • Article: not found

              Self care integrative treatment demonstrated in rural community setting improves health related quality of life of lymphatic filariasis patients in endemic villages.

              This study assessed impact of community based self care integrative treatment provided through mass camps in villages of three districts of Kerala, India endemic for lymphatic filariasis (LF). Two most endemic Primary Health centres (PHCs) were selected from each of the three districts, where maximum concentration of LF patients is recorded. Fourteen one day LF camps, each attended by 30-40 patients were conducted. Trained Accredited Social Health Activists encouraged LF patients to attend camps. Skin wash and drying, care of bacterial entry points using dermatology drugs, and simple yoga and breathing exercises were demonstrated in these camps. Patients were advised to continue these self care activities daily at home for six months. The quality of life (QoL) of LF patients was determined for Indian life style domains using validated and pretested specific questionnaire (LF-specific QoL questionnaire-LFSQQ). It addressed conditions and state of individuals with reference to LF. The questionnaire had 7 domains and each domain consisted of a series of questions with likert scale (no problem, mild, moderate, severe, most severe). 446 patients attended one day camps to get training on integrative self care treatment. 425 patients (95.3%) were followed up after six months and QoL was reassessed. Each patient's QoL in mobility, self care, usual activity, pain and discomfort and social relationship significantly improved (P value <0.01). Psychological health showed no significant change. The disease burden, for the purpose of the study was measured by asking questions about history of painful redness, swelling and cellulitis of legs (filarial fever), foul smell (odor), itching (eczema/discharge from limb), wound (non healing ulcer) and weight/size of the limb. The difference in disease burden as recorded during the sixth month follow up was measured using dependent t test, reduced significantly (P value <0.01) in 409 (96.2%) patients. 103 (24.2%) patients experienced fever during follow up. Severity of inflammatory episodes reduced from severe problem to no problem, after six months of home based self care. There was significant relation between treatment regularity and QoL status (P value=0.003). The community based one day camps that trained LF patients on skin care and daily yoga and breathing practices improved QoL. Copyright © 2013 Elsevier B.V. All rights reserved.
                Bookmark

                Author and article information

                Contributors
                Role: Editor
                Journal
                PLoS Negl Trop Dis
                PLoS Negl Trop Dis
                plos
                PLoS Neglected Tropical Diseases
                Public Library of Science (San Francisco, CA USA )
                1935-2727
                1935-2735
                16 September 2021
                September 2021
                : 15
                : 9
                : e0009701
                Affiliations
                [1 ] Centre for Neglected Tropical Diseases, Department of Tropical Disease Biology, Liverpool School of Tropical Medicine, Liverpool, United Kingdom
                [2 ] Ministry of Health, Lilongwe, Malawi
                Washington University School of Medicine, UNITED STATES
                Author notes

                The authors have declared that no competing interests exist.

                Author information
                https://orcid.org/0000-0003-1675-0204
                https://orcid.org/0000-0002-3967-9626
                https://orcid.org/0000-0002-3330-7629
                Article
                PNTD-D-21-00730
                10.1371/journal.pntd.0009701
                8445426
                34529661
                cd5b3e1e-a455-4798-b71e-7313b6c68eff
                © 2021 Martindale et al

                This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

                History
                Page count
                Figures: 2, Tables: 1, Pages: 6
                Funding
                This research was funded by grant support from the Foreign, Commonwealth and Development Office (FCDO) to the Centre for Neglected Tropical Diseases at the Liverpool School of Tropical Medicine. The funder had no role in the study design, data collection and analysis, decision to publish, or preparation of the manuscript.
                Categories
                Viewpoints
                Medicine and Health Sciences
                Health Care
                Caregivers
                Medicine and Health Sciences
                Surgical and Invasive Medical Procedures
                Medicine and Health Sciences
                Health Care
                Quality of Life
                People and Places
                Geographical Locations
                Africa
                Malawi
                Biology and Life Sciences
                Psychology
                Social Psychology
                Social Sciences
                Psychology
                Social Psychology
                Medicine and Health Sciences
                Medical Conditions
                Parasitic Diseases
                Helminth Infections
                Filariasis
                Lymphatic Filariasis
                Medicine and Health Sciences
                Medical Conditions
                Tropical Diseases
                Neglected Tropical Diseases
                Lymphatic Filariasis
                Medicine and Health Sciences
                Health Care
                Health Statistics
                Morbidity
                Medicine and Health Sciences
                Clinical Medicine
                Signs and Symptoms
                Edema
                Lymphedema

                Infectious disease & Microbiology
                Infectious disease & Microbiology

                Comments

                Comment on this article