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Psycho-social impacts, experiences and perspectives of patients with Cutaneous Leishmaniasis regarding treatment options and case management: An exploratory qualitative study in Tunisia.

ABSTRACT: Although non-fatal and mostly self-healing in the case of Leishmania (L.) major, cutaneous leishmaniasis (CL) is mainly treated to reduce lesion healing time. Less attention is paid to the improvement of scars, especially in aesthetically relevant areas of the body, which can dramatically affect patients' wellbeing. We explored patients' perspectives about treatment options and the social and psychological burden of disease (lesion and scar). Individual in-depth interviews were conducted with ten confirmed CL patients at two L. major endemic sites in Southern Tunisia (Sidi Bouzid and Gafsa). Participants were selected using a sampling approach along a spectrum covering e.g. age, sex, and clinical presentation. Patients' experiences, opinions and preferences were explored, and their detailed accounts gave an insight on the impact of CL on their everyday lives. The impact of CL was found to be considerable. Most patients were not satisfied with treatment performance and case management. They expected a shorter healing time and better accessibility of the health system. Tolerance of the burden of disease was variable and ranged from acceptance of hidden scars to suicidal thoughts resulting from the fear to become handicapped, and the stress caused by close relatives. Some believed CL to be a form of skin cancer. Unexpectedly, this finding shows the big gap between the perspectives of patients and assumptions of health professionals regarding this disease. This study provided valuable information for better case management emphasizing the importance of improving communication with patients, and accessibility to treatment. It generated context-specific knowledge to policy makers in Tunisia to implement effective case management in a country where access to treatment remains a challenge due to socio-economic and geographic barriers despite a long tradition in CL control.

SUBMITTER: Boukthir A

PROVIDER: S-EPMC7707605 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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Psycho-social impacts, experiences and perspectives of patients with Cutaneous Leishmaniasis regarding treatment options and case management: An exploratory qualitative study in Tunisia.

Boukthir Aicha A Bettaieb Jihene J Erber Astrid C AC Bouguerra Hind H Mallekh Rym R Naouar Ikbel I Gharbi Adel A Alghamdi Manal M Plugge Emma E Olliaro Piero P Ben Salah Afif A

PloS one 20201201 12

Although non-fatal and mostly self-healing in the case of Leishmania (L.) major, cutaneous leishmaniasis (CL) is mainly treated to reduce lesion healing time. Less attention is paid to the improvement of scars, especially in aesthetically relevant areas of the body, which can dramatically affect patients' wellbeing. We explored patients' perspectives about treatment options and the social and psychological burden of disease (lesion and scar). Individual in-depth interviews were conducted with te ...[more]

PMID: 33259489

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Project description:BackgroundThe incidence of zoonotic cutaneous leishmaniasis (ZCL) makes it the most widespread parasitic disease in Tunisia and the Arab world. Yet, few studies have addressed its psychological and psychosocial effects. The purpose of this study was to examine the psychosocial impact of ZCL scars among Tunisian women.MethodsWe conducted an exploratory study, we administered Revised Illness Perception Questionnaire (IPQ-R), World Health Organization Quality Of Life-26 (WHOQOL-26) and Psoriasis Life Stress Inventory (PLSI) to a group of girls and women with ZCL scar in the region of Sidi Bouzid. This group was randomly selected from volunteers who came to primary health care facilities to seek for treatment for any pathology.ResultsDescriptive statistics showed that the collected scores from the three scales exhibit heterogeneous distributions: IPQ-R (M = 63.6, SD = 15.6), PSLI (M = 9.5, SD = 6.7), WHOQOL-Physical (M = 63, SD = 12.9), WHOQOL-Psychological (M = 52.6, SD = 11.1), WHOQOL-Social (M = 61.8, SD = 17.5), and WHOQOL-Environmental (M = 47.8, SD = 13.3). The correlation analyses performed on Inter and intra-subscales showed that the emotional representations associated with ZCL were correlated with the loss of self-esteem and feelings of inferiority (r = 0.77, p<0.05). In addition, high education level and the knowledge about ZCL are positively correlated with cognitive and emotional representation in the IPQ-R (r = 0.33, p<0.05). "Rejection experiences" and the "anticipation and avoidance of stress" were respectively negatively correlated with age (r = -0.33, p<0.05 and r = -0.31, p<0.05). Correlations between the scores on IPQ-R domains and PLSI factors were significant. The results showed that anticipation of rejection and avoidance of stress are strongly correlated with a negative perception of ZCL. Quality of life scores were not correlated with either age, education level, time of illness, or the number of facial or body scars. However, the correlations between quality of life scores and the multiple IPQ-R domains were all insignificant. Finally, there was a negative correlation between the scores on the perceived quality of social life and the knowledge about ZCL (r = -0.34, p<0.05).ConclusionsThis makes it vital to strengthen preventive health education. Conducting studies on ways to establish a holistic support system for managing ZCL, a system that covers the psychological challenges and the barriers it causes to women's social and professional integration, is a vital first step.

Project description:BACKGROUND:During the outbreak of cutaneous leishmaniasis in the Kurdistan Region of Iraq that started in 2015, the course of the disease and the treatment were not consistent with the available literature. Physicians, particularly dermatologists, faced challenges with treating the cutaneous leishmaniasis lesions with high rates of treatment failure and resistance to treatment. We used Q-methodology to understand the range and diversities of opinions and the practical experiences of dermatologists about the treatment difficulties of cutaneous leishmaniasis. METHODS:This Q-methodology study was carried out in Erbil, Kurdistan Region of Iraq, and involved 37 dermatologists. A set of 40 statements related to different aspects of difficulties and uncertainties of treating cutaneous leishmaniasis was prepared. The dermatologists were requested to distribute the 40 statements into a scaled grid of nine piles from least agree to most agree. We applied by-person factor analysis using PQMethod 2.35 for the data analysis. RESULTS:The analysis revealed two different viewpoints about the treatment of cutaneous leishmaniasis and a consensus viewpoint. The first viewpoint emphasized the use of sodium stibogluconate-based combination therapy, concerns with treatment failure, and lack of compliance with the treatment. The second viewpoint emphasized the lack of standard treatment and advances in the treatment of cutaneous leishmaniasis. There was a consensus between both groups of respondents about many aspects of the treatment of cutaneous leishmaniasis, including considering sodium stibogluconate the first drug of choice for cutaneous leishmaniasis treatment. CONCLUSIONS:This study revealed a diversity of viewpoints and uncertainties about the effectiveness of the available treatment modalities and treatment difficulties and failure. Interrupted supply and poor quality of the available drugs and lack of a standard and advanced treatment are the main problems facing the treatment of cutaneous leishmaniasis. More research is required to determine the best treatment modalities for the different types of cutaneous leishmaniasis. There is a need for the development of treatment guidelines specific to the Iraqi context with a particular focus on the treatment of the resistant and atypical cases of cutaneous leishmaniasis.

Project description:BackgroundCutaneous leishmaniasis (CL), endemic in Guatemala, mostly affects poor people living in the northern region. A national control program that includes surveillance, diagnose, and treatment offered free of cost by the Ministry of Health (MoH) has been in place since 2003. However, the incidence is increasing and treatment rates are not optimal, suggesting that current efforts are not being effective. This study aimed to understand barriers and facilitators of CL control in Guatemala as experienced and perceived by key stakeholders in order to comprehend what works well and does not and suggest evidence-informed interventions.MethodsThe study was conducted in the Cobán municipality, the most endemic of Guatemala, situated in the Department of Alta Verapaz. Data were collected during May and June 2019 via focus groups and semi-structured interviews with key stakeholders, including local and national health personnel and residents of four communities of the endemic region. Thematic and content analysis of the collected data was conducted using NVIVO.ResultsThree overarching issues hamper the effectiveness of current CL efforts: resource scarcity, treatment challenges, and knowledge-action gaps. Scarce economic resources from the MoH and community residents negatively impact incidence, detection of cases and treatment rates in that preventive action is insufficient and healthcare access is low. In addition, local health workers often lack specialized CL training and access to the national CL control guidelines. With regards to the population living in the study area, misunderstanding of disease causation, shame associated with CL lesions, treatment pain fear, and long (often uncertain) waiting times for diagnose and treatment negatively affect people's willingness to seek help, treatment adherence, and their trust on the healthcare provided.ConclusionsCulturally sensitive CL preventive action must be developed. Given the scarce economic resources available for CL control in the country, the involvement of trained community health workers and the inclusion of thermotherapy as a treatment option is also advised. Other cost-effective actions include: ensuring all health workers receive CL training and have access to national CL control guidelines, improving national procurement system to avoid treatment shortages, and provision of motorized vehicles to increase active surveillance and treatment rates.

Project description:BACKGROUND:Until now, few studies have evaluated the effect of cutaneous leishmaniasis (CL) on patients' quality of life, and none have used a specific instrument to measure this effect. The objective of this study was to identify factors that may be associated with the high impact of CL and to assess patients' satisfaction with treatment and health services by utilizing a disease-specific questionnaire. METHODOLOGY:Between December 2015 and May 2017, 100 patients with localized cutaneous leishmaniasis were interviewed at a leishmaniasis referral center in Brazil. Data were collected by two questionnaires. One questionnaire compiled the sociodemographic, economic, and clinical information related to the disease. The second questionnaire was the Cutaneous Leishmaniasis Impact Questionnaire (CLIQ), which consisted of two subscales that measured 1) the general impact of CL and 2) patients' perceptions of treatment and health services. The median scores from each of these two subscales were used to dichotomize the dependent variables. Risk factors for the high impact of CL and for low patient satisfaction with treatment and health services were analyzed with a logistic regression analysis. RESULTS:The chance of higher impact of CL was increased in patients with the presence of comorbidities (OR: 3.9; CI 1.25-12.36), in those with absences from work (OR: 12.0; CI 3.78-42.55), in those who relied on public transportation by a municipal bus (OR: 5.8; CI 1.27-26.77), and in those who had illness-related expenses greater than U$137 (OR: 3.5; CI 1.17-10.24). The chance of patient dissatisfaction with treatment and health services increased with higher education (OR: 5.0; CI 1.19-21.03) and with illness-related expenses exceeding U$137 (OR: 4.64; CI 1.49-14.48). Once the sample was non-probabilistic, findings are not representative of CL patients in general. CONCLUSIONS:CL and its treatment have a negative impact on patients' quality of life. Considering these effects during public health planning may help patients to confront the disease.

Project description:INTRODUCTION:Lack of investments in drug development, lack of standardisation of clinical trials and the complexity of disease presentations contribute to the current lack of effective, safe and adapted treatments for cutaneous leishmaniasis (CL). One aspect concerns outcomes affecting patients' quality of life (QoL): these are hardly assessed in trials, despite potential functional and/or aesthetic impairment caused by CL, which typically affects disadvantaged and vulnerable people living in rural areas. Here, we describe the approach used to bring perspectives of patients with CL into designing and assessing treatments. METHODS AND ANALYSIS:This international qualitative study uses interviews with patients to explore their experiences with CL to (1) elicit outcomes and eligibility criteria for clinical trials important to them and (2) to better understand their needs and views about the disease and their requirements and expectations from treatment. Here, we describe the set-up of this collaborative study and the protocol. Data collection is ongoing.The protocol includes study design, preparation, conduct and analysis of individual interviews with approximately 80 patients in seven countries (Burkina Faso, Brazil, two sites in Colombia, Iran, Morocco, Peru and Tunisia) where CL is prevalent. Principal investigators and sites were selected through an open call, and two workshops were organised for protocol development and training in conduct and analysis of qualitative health research. Patient recruitment aims at covering a maximum variation of experiences. Transcripts will be analysed to identify outcomes and eligibility criteria as well as further topics that are expected to emerge from the interviews, such as direct and indirect costs related to CL, its psychological impact, preferred modes of drug administration and traditional treatments. ETHICS AND DISSEMINATION:The study received ethical approval by the responsible committees of each of the participating institutions. Findings will be disseminated through publication in peer-reviewed journals, scientific meetings and to participants and their communities.

Dataset Information

Psycho-social impacts, experiences and perspectives of patients with Cutaneous Leishmaniasis regarding treatment options and case management: An exploratory qualitative study in Tunisia.

Publications

Psycho-social impacts, experiences and perspectives of patients with Cutaneous Leishmaniasis regarding treatment options and case management: An exploratory qualitative study in Tunisia.

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