Caregiver burden in Buruli ulcer disease: Evidence from Ghana

Amoako, Yaw Ampem; Ackam, Nancy; Omuojine, John-Paul; Oppong, Michael Ntiamoah; Owusu-Ansah, Abena Gyawu; Abass, Mohammed K.; Amofa, George; Ofori, Elizabeth; Frimpong, Michael; Bailey, Freddie; Molyneux, David; Phillips, Richard Odame

doi:10.1371/journal.pntd.0009454

Cited by 16 publications

(9 citation statements)

References 31 publications

(53 reference statements)

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“…Most BUD patients and caregivers showed signs of mental distress such as fear, sadness, nervousness as a result of the disease. These results are also in keeping with similar studies on mental burden of caregivers and patients with NTDs [ 15 , 17 , 19 , 40 ].…”

Section: Discussionsupporting

confidence: 91%

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Mental health and quality of life burden in Buruli ulcer disease patients in Ghana

et al. 2021

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Background Buruli ulcer disease (BUD) is a necrotic skin neglected tropical disease (NTD) that has both a mental and physical health impact on affected individuals. Although there is increasing evidence suggesting a strong association between neglected tropical diseases (NTDs) and mental illness, there is a relative lack of information on BUD’s impact on the mental health and quality of life (QoL) of affected individuals in Ghana. This study is to assess the impact of BUD on mental health and quality of life of patients with active and past BUD infection, and their caregivers. Methods We conducted a case control study in 3 BUD endemic districts in Ghana between August and November 2019. Face-to-face structured questionnaire-based interviews were conducted on BUD patients with active and past infection, as well as caregivers of BUD patients using WHO Quality of Life scale, WHO Disability Assessment Schedule, Self-Reporting Questionnaire, Buruli Ulcer Functional Limitation Score and Hospital Anxiety and Depression Scale data tools. Descriptive statistics were used to summarize the characteristics of the study participants. Participant groups were compared using student t test and chi-square (χ2) or Fisher’s exact tests. Mean quality of life scores are reported with their respective 95% confidence intervals. Data was analysed using STATA statistical software. Results Our results show that BUD patients with active and past infection, along with their caregivers, face significant levels of distress and mental health sequelae compared to controls. Depression (P = 0.003) was more common in participants with active (27%) and past BU infection (17%), compared to controls (0%). Anxiety was found in 42% (11/26) and 20% (6/29) of participants with active and past BUD infection compared to 14% (5/36) of controls. Quality of life was also significantly diminished in active BUD infection, compared to controls. In the physical health domain, mean QoL scores were 54 ± 11.1 and 56 ± 11.0 (95% CI: 49.5‒58.5 and 52.2‒59.7) respectively for participants with active infection and controls. Similarly in the psychological domain, scores were lower for active infection than controls [57.1 ± 15.2 (95% CI: 50.9‒63.2) vs 64.7 ± 11.6 (95% CI: 60.8‒68.6)]. Participants with past infection had high QoL scores in both physical [61.3 ± 13.5 (95% CI: 56.1‒66.5)] and psychological health domains [68.4 ± 14.6 (95% CI: 62.7‒74.0)]. Conclusions BUD is associated with significant mental health distress and reduced quality of life in affected persons and their caregivers in Ghana. There is a need for integration of psychosocial interventions in the management of the disease. Graphic abstract

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Section: Discussionsupporting

confidence: 91%

“…Caregiving demands committing resources and time which may be challenging. Caregiver burden studies of NTDs have reported significant mental distress and reduced quality of life associated with performing such roles [ 13 – 17 ].…”

Section: Introductionmentioning

confidence: 99%

Mental health and quality of life burden in Buruli ulcer disease patients in Ghana

et al. 2021

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“…The support of endemic communities is critical for control and eradication activities within affected populations. Integration of psychosocial support services have been advocated as essential in the control of neglected tropical diseases [16][17][18][19]. An understanding of the beliefs and attitudes of community members affected with scabies will be essential to guide the design and implementation of control activities.…”

Section: Introductionmentioning

confidence: 99%

Beliefs, attitudes and practices towards scabies in central Ghana

Amoako

Rietschoten²,

Oppong³

et al. 2023

PLoS Negl Trop Dis

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Background Scabies commonly affects poor populations in low-middle-income countries. The WHO has advocated for country-driven and country-owned control strategies. Knowledge of context specific issues will be important for design and implementation of scabies control interventions. We aimed to assess beliefs, attitudes and practices towards scabies in central Ghana. Methodology/Principal findings Data was collected via semi-structured questionnaires for people who had active scabies or scabies in the past year and people who never had scabies in the past. The questionnaire covered several domains: knowledge about the causes and risk factors; perceptions towards stigmatisation and consequences of scabies in daily life; and treatment practices. Out of 128 participants, 67 were in the (former) scabies group and had a mean age of 32.3 ± 15.6 years. Overall scabies group participants less often indicated a factor to predispose to scabies than community controls; only ‘family/friends contacts’ was more often mentioned in the scabies group. Scabies causation was attributed to poor hygiene, traditional beliefs, heredity and drinking water. Individuals with scabies delay care seeking (median time from symptom onset to visiting the health centre was 21 [14 – 30] days) and this delay is enhanced by their beliefs (like witchcraft and curses) and a perception of limited disease severity. Compared to past scabies participants in the dermatology clinic, participants with past scabies in the community tended to have a longer delay (median [IQR] 30 [14–48.8] vs 14 [9.5–30] days, p = 0.002). Scabies was associated with health consequences, stigma, and loss of productivity. Conclusion/Significance Early diagnosis and effective treatment of scabies can lead to persons less frequently associating scabies with witchcraft and/ or curses. There is the need to enhance health education to promote early care seeking, enhance knowledge of communities on impact and dispel negative perceptions about scabies in Ghana.

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“…Further, there might be indirect costs emanating from loss of productive work hours for affected persons and their caregivers. BU patients and caregivers also face significant mental health burden and a reduced quality of life 4,39,40 .…”

Section: Discussionmentioning

confidence: 99%

Buruli-RifDACC: Evaluation of the efficacy and cost-effectiveness of high-dose versus standard-dose rifampicin on outcomes in Mycobacterium ulcerans disease, a protocol for a randomised controlled trial in Ghana

et al. 2022

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Background: Buruli ulcer (BU) can lead to disfiguring ulcers and permanent disability. The 2030 World Health Organization (WHO) road map for Neglected Tropical Diseases (NTDs) calls for major scaling up in diagnosis and management to eliminate disability due to the disease. Current treatment for BU is with daily oral rifampicin (10mg/kg dose) and clarithromycin (15mg/kg dose) for eight weeks, combined with standard gauze wound dressings. Dialkylcarbamoyl chloride (DACC)-coated dressings have been shown to irreversibly bind bacteria on wound surfaces resulting in their removal when dressings are changed. This trial aims to determine whether combining a high-dose oral rifampicin regimen with DACC dressings can improve the rate of wound healing relative to standard-dose oral rifampicin combined with DACC dressings. Methods: This is an individual, multi-centre Phase 3 randomised controlled trial, which will be conducted in three clinical sites in Ghana. The primary outcome measure will be the mean time to clearance of viable mycobacteria. Cost and health-related quality of life data will be collected, and a cost-effectiveness analysis will be performed. Discussion: The findings from this trial could lead to a change in how BU is treated. A shorter but more efficacious regimen would lead to improved treatment outcomes and potentially substantial financial and economic savings. Trial registration Pan African Clinical Trials Repository (registration number; PACTR202011867644311). Registered on 30th November 2020.

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Caregiver burden in Buruli ulcer disease: Evidence from Ghana

Cited by 16 publications

References 31 publications

Mental health and quality of life burden in Buruli ulcer disease patients in Ghana

Mental health and quality of life burden in Buruli ulcer disease patients in Ghana

Beliefs, attitudes and practices towards scabies in central Ghana

Buruli-RifDACC: Evaluation of the efficacy and cost-effectiveness of high-dose versus standard-dose rifampicin on outcomes in Mycobacterium ulcerans disease, a protocol for a randomised controlled trial in Ghana

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