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1.
BMJ Open ; 12(3): e056620, 2022 03 30.
Artigo em Inglês | MEDLINE | ID: mdl-35354636

RESUMO

INTRODUCTION: Leprosy, podoconiosis and lymphatic filariasis (LF) are three skin-related neglected tropical diseases. All three conditions can lead to temporary and permanent impairments. These impairments progressively worsen and are major determinants of stigma, discrimination and participation restrictions. Self-care is essential to prevent disabilities and chronic disease complications. Many persons with leprosy-related, LF-related and podoconiosis-related disabilities need to practice self-management routines their entire life. This is difficult without support and encouragement of others. The objective of this study was to assess the effectiveness of a family-based intervention in terms of physical outcomes related to prevention and self-management of disabilities due to leprosy, podoconiosis and LF and family quality of life and well-being compared with usual practice and care. METHODS AND ANALYSIS: The study will use a cluster-randomised controlled trial design with two study arms. The project will be carried out in endemic districts in East and West Gojjam zones in the Amhara region in Ethiopia. Clusters consist of kebeles (lower administrative structures in the district) that have been merged, based on their geographical proximity and the number of cases in each kebele. A total of 630 participants will be included in the study. The intervention group will consist of 105 persons affected by leprosy, 105 persons affected by LF or podoconiosis, and 210 family members. The control group will consist of 105 persons affected by leprosy and 105 persons affected by LF or podoconiosis. The family-based intervention comprises an essential care package that consists of the following three main components: (1) self-management of disabilities, (2) economic empowerment and (3) psychosocial support. Participants in the control areas will receive usual practice and care. Data analysis includes, but is not limited to, calculating the percentage of change and corresponding 95% CI of physical impairment outcomes in each group, before and after the intervention is implemented, effect sizes, intention to treat and difference in difference analysis. ETHICS AND DISSEMINATION: Ethical approval has been obtained from the Debre Markos University Health Sciences Institutional Research Ethics Review Committee. Results will be disseminated through peer-reviewed publications, conference presentations and workshops. TRIAL REGISTRATION NUMBER: PACTR202108907851342.


Assuntos
Filariose Linfática , Elefantíase , Hanseníase , Autogestão , Elefantíase/prevenção & controle , Filariose Linfática/complicações , Filariose Linfática/prevenção & controle , Etiópia/epidemiologia , Humanos , Hanseníase/complicações , Hanseníase/terapia , Qualidade de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto
2.
Indian J Dermatol Venereol Leprol ; 88(2): 177-183, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-34491666

RESUMO

BACKGROUND: Quality of life (QoL) has not been evaluated in Indian patients having epidermolysis bullosa (EB). AIMS: The aims of the study were to measure health-related QoL in Indian patients having EB using the quality of life in epidermolysis bullosa (QoLEB) questionnaire, and to find its correlation with clinically measured disease severity. METHODS: In this observational cross-sectional study, the QoLEB questionnaire was translated from English to Hindi (QoLEB-Hin) and culturally adapted without a change in concept following standard guidelines. QoLEB-Hin and three clinical scores that have been independently validated in EB, that is, Birmingham Epidermolysis Bullosa severity score (BEBs), Instrument for Scoring Clinical Outcomes of Research for Epidermolysis Bullosa (iscorEB) and Epidermolysis Bullosa Disease Activity and Scarring Index (EBDASI), were administered to EB patients/their parents in the presence of an expert. This was followed by validity and correlation studies. RESULTS: Fifty-four patients were recruited (19-females, 35-males; median age 5 years, range 0.025-36 years and 12 patients with an age >13 years). The parents answered the questions for 42 patients (age <13 years). Dystrophic epidermolysis bullosa was diagnosed in 32 (59.2%) patients (dominant dystrophic epidermolysis bullosa [DDEB]-19 [35.2%] and recessive dystrophic epidermolysis bullosa [RDEB]-13 [24.1%]). Junctional epidermolysis bullosa (JEB) and epidermolysis bullosa simplex (EBS) were each diagnosed in 11 (20.4%) patients. The mean ± standard deviation (SD) of QoLEB-Hin score of all epidermolysis bullosa patients was 11.3 ± 7.6 (range 0-28; median and interquartile range [IQR], 10, 10) and reflected an overall moderate degree of affliction on QoL of patients. Mean ± SD of QoLEB-Hin scores for EBS, JEB, DDEB and RDEB were 5.4 ± 3.7 (range, 1-13; median and IQR, 6, 6), 11 ± 6.2 (range, 1-22; median and IQR, 10, 6), 9 ± 5.7 (range, 0-19; median and IQR, 10, 10) and 20.1 ± 6.4 (range, 12-28; median and IQR, 19, 12.5), respectively (P < 0.001, Kruskal-Wallis analysis of variance). Cronbach's alpha coefficient of 0.946 was obtained for all items indicating excellent internal consistency and reliability. Mean sample adequacy was 0.91; absolute fit based off diagonal values was 0.99; indices root mean square error of approximation and root mean square residual were 0.04 and 0.05, respectively, and Tucker Lewis index was >1 indicating overfit. The mean time taken to complete the questionnaire was 6.1 min (range, 6-8 min). QoLEB-Hin correlated significantly (P < 0.001) with BEBs (ρ = 0.79), iscorEB (ρ= 0.63) and EBDASI (ρ = 0.77). Three multiple linear regression models were used to ascertain the strength of relationship between QoL-Hin, and BEBs, iSCOREB and EBDASI, respectively, after adjusting for age, gender and disease subtype. The EBDASI clinical score accounted for approximately 74% (R2 = 0.736, P < 0.001) of the variability in QOL-Hin, as compared to 73% and 55% by BEBs (R2 = 0.731, P < 0.001) and iscorEB (R2 = 0.545, P < 0.001), respectively. LIMITATIONS: Parents filled out the questionnaires for many patients and probably led to an overall moderate degree of affliction of QoL. Comparison with Dermatology Life Quality Index and other QoL scores were not done in this study. Furthermore, the scoring was done at one point in time, and test-retest measurements could not be performed. CONCLUSION: This study validated QoLEB-Hin in an Indian population finding an overall moderate reduction in QoL due to EB. Maximally affected QoL was seen in patients with RDEB. Furthermore, QoLEB-Hin had a variable positive correlation and association with all clinical severity assessment scores.


Assuntos
Epidermólise Bolhosa/complicações , Qualidade de Vida , Índice de Gravidade de Doença , Inquéritos e Questionários , Adolescente , Adulto , Criança , Pré-Escolar , Estudos Transversais , Feminino , Humanos , Índia , Lactente , Masculino , Tradução , Adulto Jovem
3.
PLoS One ; 16(11): e0260243, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34797854

RESUMO

BACKGROUND: Psoriasis is a chronic inflammatory disease characterized by keratinocyte hyperproliferation and aberrant differentiation with great negative impact on patients' quality of life (QoL). This study aimed at assessing factors influencing management practice, and QoL and its associated factors among ambulatory psoriatic patients visiting All Africa Leprosy, Tuberculosis and Rehabilitation Training (ALERT) Center in Addis Ababa, Ethiopia. MATERIALS AND METHODS: A cross sectional study was conducted in 207 patients with psoriasis attending the dermatology clinic of ALERT Center in Addis Ababa, Ethiopia. Data were collected using structured questionnaire and patients' chart review. Dermatology Life Quality Index (DLQI) was used to measure patients' QoL. Patients' characteristics were summarized using descriptive statistics and predictors of QoL were identified by binary logistic regression. RESULTS: Among 207 study participants, 122 (58.9%) were females. The mean age of the study population was 37.92 (SD = 14.86) years (ranging from 16 to 68 years). The mean age at which diagnosis of psoriasis made was 32 (SD = 13.7) years ranging from 10 to 62 years. The duration of the disease in 112 (54.1%) patients were more than or equal to 5 years. Majority of study participants 145 (70.0%) had plaque psoriasis followed by sebopsoriasis, 24 (11.6%). The majority of plaque psoriasis (80%) cases were managed by topical corticosteroids with or without salicylic acid or coal tar and only 21 (14.5%) treated by methotrexate alone. The mean DLQI was 6.25 corresponding to a moderate effect. Symptoms and feelings were the most affected domains of QoL. Factors associated with poor QoL were female [AOR = 0.17 (95%CI: 0.06, 0.48)], low, above average and high family income ([AOR = 0.12 (95% CI: 0.02, 0.56)], [AOR = 0.06 (95% CI:0.01, 0.32)], and [AOR = 0.03 (95% CI: 0.01, 0.22)]), respectively, and primary education level [AOR = 0.14 (95% CI: 0.03, 0.64)] while being on systemic therapy [AOR = 4.26 (CI: 1.18, 15.35)] was predictor of better QoL. Poor QoL was predominant in females [AOR = 0.17 (95%CI: 0.06, 0.48)], low income [AOR = 0.12 (95% CI: 0.02, 0.56] patients, and patients with primary education level [AOR = 0.14 (95% CI: 0.03, 0.64)]. Patients on systemic therapy [AOR = 4.26 (CI: 1.18, 15.35)] had good QoL. CONCLUSION: Our study identified that topical corticosteroids were the mainstay of psoriasis treatment in the dermatology clinic of ALERT Center in Addis Ababa, Ethiopia. Moderate effect QoL was achieved by study participants based on DLQL score.


Assuntos
Psoríase/tratamento farmacológico , Adolescente , Adulto , Criança , Estudos Transversais , Escolaridade , Etiópia , Feminino , Humanos , Masculino , Metotrexato/uso terapêutico , Pessoa de Meia-Idade , Qualidade de Vida , Adulto Jovem
4.
S Afr Fam Pract (2004) ; 63(1): e1-e6, 2021 10 29.
Artigo em Inglês | MEDLINE | ID: mdl-34797098

RESUMO

Leprosy (Hansen's disease) can affect multiple organs and body structures. Skin signs are typically observed in the early phase of the disease, hence being the first identifiable signs to propel clinical suspicion. Leprosy predominantly affects the skin and peripheral nerves. The disease has been documented many centuries preceding the biblical era. Over many decades, the classification of Hansen's disease has changed as modern medical science evolved. Patients with leprosy are usually subjected to discrimination, rejection from society and can suffer from social stigma, poor quality of life (QoL), low self-esteem and permanent disfigurements. Studies have shown that leprosy has a significant negative impact on the patients' QoL. Leprosy is often not suspected by practicing clinicians because it is no longer emphasised in the medical curricula. In modern years, attention has gradually shifted from leprosy to tuberculosis (TB) and human immunodeficiency virus (HIV).


Assuntos
Hanseníase , Qualidade de Vida , Afeto , Bíblia , Humanos , Hanseníase/diagnóstico , Estigma Social
5.
Artigo em Inglês | MEDLINE | ID: mdl-34623061

RESUMO

BACKGROUND: Topical moisturizer is recommended for atopic dermatitis. AIMS: The aim of the study was to investigate the knowledge gap regarding the efficacy of moisturizer in young patients. METHODS: A systematic review and meta-analysis were conducted on randomised controlled trials comparing participant's ≤15 years with atopic dermatitis, receiving either topical moisturizer or no moisturizer treatment. Certainty of evidence was assessed using the Grading of Recommendations, Assessment, Development and Evaluation (GRADE) framework. RESULTS: Six trials were included (intervention n= 436; control n= 312). Moisturizer use extended time to flare by 13.52 days (95% confidence interval 0.05-26.99, I2 88%). Greater reduction in risk of relapse was observed during the first month of latency (pooled risk ratio 0.47, 95% confidence interval 0.31-0.72, I2 28%) compared to the second and third months (pooled risk ratio 0.65, 95% confidence interval 0.47-0.91, I2 35% and pooled risk ratio 0.63, 95% confidence interval 0.47-0.83, I2 33%, respectively).Treated patients were 2.68 times more likely to experience a three-six months remission (95% confidence interval1.18-6.09, I2 56%). Moisturizer minimally improved disease severity and quality of life. LIMITATIONS: There is a dire need to conduct randomised controlled trials with more robust and standardised designs. CONCLUSION: Moisturizer benefits young patients with atopic dermatitis. However, more research is needed to better estimate its efficacy.


Assuntos
Dermatite Atópica/terapia , Emolientes , Creme para a Pele , Criança , Humanos , Qualidade de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto , Indução de Remissão , Índice de Gravidade de Doença
7.
BMC Public Health ; 21(1): 1748, 2021 09 25.
Artigo em Inglês | MEDLINE | ID: mdl-34563162

RESUMO

BACKGROUND: Lymphatic filariasis (LF), Buruli ulcer (BU) and leprosy are neglected tropical diseases (NTDs) of the skin co-endemic in some communities in Nigeria. Not enough is known about the effectiveness of integrated morbidity management and disability prevention in people with these conditions. An integrated self-care intervention was carried out for people with these skin NTDs in two endemic communities of Anambra state, Nigeria. The objective of the study was to assess the effectiveness of self-care practices on costs of care, disability status and health-related quality of life. METHODS: This study utilised a quasi-experimental pre-test/post-test design to assess the effectiveness of the self-care interventions for people affected by NTDs to care for these impairments at home. Data were collected using questionnaires administered at the beginning and at the end of the intervention on monthly cost of morbidity care, and on participants' disability status and their quality of life (QoL). Focus group discussions (FGDs) were held with both the participants and healthcare workers at follow-up. RESULTS: Forty-eight participants were recruited. Thirty participants (62.5%) continued the self-care interventions until the end of the project. Of those, 25 (83%) demonstrated improvement from their baseline impairment status. The mean household costs of morbidity care per participant decreased by 66% after the intervention, falling from US$157.50 at baseline to US$53.24 after 6 months of self-care (p = 0.004). The mean disability score at baseline was 22.3; this decreased to 12.5 after 6 months of self-care (p < 0.001). Among the 30 participants who continued the interventions until the end of the project, 26 (86.7%) had severe disability score (i.e. a score of 10-46) at baseline, and the number with severe disability fell to 18 (60%) of the 30 after the intervention. The mean QoL score increased from 45.7 at baseline to 57.5 at the end of the intervention (p = 0.004). CONCLUSIONS: The 6-month self-care intervention for participants affected by BU, leprosy, or LF led to lower costs of care (including out-of-pocket costs and lost earnings due to morbidity), improved QoL scores, and reduced disability status. TRIAL REGISTRATION: ISRCTN Registry: ISRCTN20317241 ; 27/08/2021, Retrospectively registered.


Assuntos
Hanseníase , Qualidade de Vida , Humanos , Morbidade , Doenças Negligenciadas/terapia , Nigéria , Autocuidado
8.
Rev Esc Enferm USP ; 55: e20200357, 2021.
Artigo em Inglês, Português | MEDLINE | ID: mdl-34495209

RESUMO

OBJECTIVE: To explore the scientific evidence regarding the leprosy patients quality of life. METHOD: Scoping review according to the Joanna Briggs Institute methodology, with articles indexed in PubMed, Cochrane, LILACS, Embase, CINAHL, Scopus, Web of Science, PsyINFO, INFOLEP, and Google Scholar databases, published in full in Portuguese, English, or Spanish. RESULTS: Seventy-four studies were identified, with 71 of quantitative approach and 3 with a mixed method. There was a predominance of studies published in Brazil (58.1%), with an adult population, (97.3%) and recruited in reference centers for the treatment of leprosy (52.7%). There was greater use of the WHOQOL-bref (50%) and SF-36 (18.9%) instruments to assess quality of life. The study showed that the greatest impairment in quality of life was related to the delay in the diagnosis of the disease, to leprosy reactions, physical disabilities, neuropathic pain, and stigma. CONCLUSION: Most studies were developed in endemic countries, with adults, and based on observational studies, and the worst scores obtained were associated with physical domain impairment.


Assuntos
Hanseníase , Qualidade de Vida , Adulto , Brasil , Humanos
9.
Einstein (Sao Paulo) ; 19: eAO5936, 2021.
Artigo em Inglês, Português | MEDLINE | ID: mdl-34431850

RESUMO

OBJECTIVE: To evaluate quality of life and associated factors in patients with leprosy. METHODS: A cross-sectional study with 63 people diagnosed as leprosy, seen at a reference service for the disease in the southeastern region of Mato Grosso, Brazil. The questionnaire World Health Organization Quality of Life Bref was used to evaluate quality of life. Simple and multiple linear regressions evaluated the association between sociodemographic variables and quality of life domains. RESULTS: The highest mean of quality of life was observed in the psychological domain (16.28±2.30), and the lowest in the environmental domain (13.86±2.21). Females, individuals with no partners, and people who owned their own house had the lowest quality of life means within the psychological domain. People who did not receive visits by Community Health Workers had the lowest means in quality of life within the environmental domain. Multivariate analysis revealed that the best quality of life was associated to self-reported white skin color within the environmental domain, and the worst quality of life was associated to less schooling within the physical domain. CONCLUSION: This study showed the influence of sociodemographic factors on the quality of life of patients with leprosy, and indicated the need for comprehensive health care, considering the social determinants of health.


Assuntos
Hanseníase , Qualidade de Vida , Brasil/epidemiologia , Estudos Transversais , Feminino , Humanos , Inquéritos e Questionários
10.
Artigo em Inglês | MEDLINE | ID: mdl-34379960

RESUMO

BACKGROUND: Vitiligo places a significant psycho-social burden on caregivers and family members. AIMS: The aim of the study was to develop and preliminarily validate a scale to measure the psychosocial impact of vitiligo on adult family members. METHODS: Themes that emerged from qualitative interviews and a focus group discussion with family members were used to generate items for a preliminary scale, followed by pre-testing and scale development. The new scale was then tested with two comparator scales and a global question. RESULTS: A preliminary scale with 32 items was pilot tested on 30 participants. Following this, the scale was condensed to 16 items in 12 domains that were administered to 159 participants. Scale scores ranged from 0 to 48 with a mean of 19.75 ± 12.41. The scale had excellent internal consistency with Cronbach's alpha coefficient of 0.92 (0.70-0.95) and also showed good test-retest reliability at two weeks (r = 0.946). The scale showed criterion, convergent and known group validity. LIMITATIONS: It was conducted in a large teaching hospital which may have resulted in selection of patients with persistent or progressive disease and more worried family members. Vitiligo is highly stigmatized in our country and the performance of the scale may need to be evaluated in other communities and cultures as well where stigma is less oppressive. CONCLUSION: Family Vitiligo Impact Scale appears to be an easy-to-complete, reliable and valid instrument to measure the psychosocial impact of vitiligo in family members of patients. It may be useful as an outcome measure in both clinical and research settings.


Assuntos
Qualidade de Vida , Inquéritos e Questionários , Vitiligo/psicologia , Adulto , Família , Feminino , Grupos Focais , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Psicometria
11.
Trials ; 22(1): 453, 2021 Jul 15.
Artigo em Inglês | MEDLINE | ID: mdl-34266456

RESUMO

BACKGROUND: Leprosy is curable with multidrug therapy and treatment in the early stages can prevent disability. However, local nerve damage can lead to injury and consequently recurring and disfiguring ulcers. The aim of this study is to evaluate the treatment of leprosy ulcers using an autologous blood product; leukocyte and platelet-rich fibrin (L-PRF) to promote healing. METHODS: This is a single-centre study in the Anandaban Hospital, The Leprosy Mission Nepal, Kathmandu, Nepal. Consenting patients (n=130) will be individually randomised in a single-blinded, controlled trial. Participants will be 18 years of age or older, admitted to the hospital with a clean, dry and infection-free chronic foot ulcer between 2 and 20 cm2 in size. If the ulcer is infected, it will be treated before enrolment into the study. The intervention involves the application of leukocyte and platelet-rich fibrin (L-PRF) matrix on the ulcer beds during twice-weekly dressing changes. Controls receive usual care in the form of saline dressings only during their twice-weekly dressing changes. Primary outcomes are the rate of healing assessed using standardised photographs by observers blind to allocated treatment, and time to complete re-epithelialization. Follow-up is at 6 months from randomisation. DISCUSSION: This research will provide valuable information on the clinical and cost-effectiveness of L-PRF in the treatment of leprosy ulcers. An additional benefit is the evaluation of the effects of treatment on quality of life for people living with leprosy ulcers. The results will improve our understanding of the scalability of this treatment across low-income countries for ulcer healing in leprosy and potentially other conditions such as diabetic ulcers. TRIAL REGISTRATION: ClinicalTrials.gov ISRCTN14933421 . Registered on 16 June 2020.


Assuntos
Hanseníase , Fibrina Rica em Plaquetas , Adolescente , Adulto , Quimioterapia Combinada , Humanos , Hansenostáticos , Hanseníase/diagnóstico , Hanseníase/terapia , Leucócitos , Nepal , Qualidade de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto , Úlcera
12.
Artigo em Inglês | MEDLINE | ID: mdl-34245539

RESUMO

BACKGROUND: Literature on the quality of life trends across time in children with atopic dermatitis are scarce. AIMS: To assess factors associated with quality of life of children with atopic dermatitis after a one-year follow-up and to examine the factors contributing to greater improvement in the atopic dermatitis-related quality of life over one year. METHODS: Our cohort consisted of 98 children who were treated for atopic dermatitis at the clinic of dermatovenereology. Data collection included atopic dermatitis scoring using the SCORing Atopic Dermatitis (SCORAD) index, Children's Dermatology Life Quality Index (CDLQI) for children aged > four years and Infants' Dermatitis Quality of Life Index (IDLQI) for children aged 0-4 years. Categorization of the impairment of quality of life score due to atopic dermatitis was as follows: mild (score from 0 to 6), moderate (score from 7 to 12) and severe (score from 13 to 30). The cohort was followed for one year after which a total of 80 children were reassessed. RESULTS: Improvements of both CDLQI and IDLQI were observed in children whose impairment of quality of life due to atopic dermatitis after one year was 'mild'. This was not observed in children whose atopic dermatitis caused either 'moderate' or 'severe impairment' of their quality of life. Adjusted analysis showed that lower initial SCORAD and greater improvement in SCORAD after the one-year follow-up were associated with a better quality of life at follow-up. LIMITATIONS: The size of our cohort was relatively small. Study participants were recruited from the largest urban and medical referral center in Serbia. Persons from suburban or rural regions may have had different perceptions of atopic dermatitis-related quality of life. CONCLUSION: Children with less severe atopic dermatitis were more likely to improve their atopic dermatitis-related quality of life. Lower SCORAD was associated with both better quality of life initially and greater improvement in quality of life after one year of follow-up.


Assuntos
Dermatite Atópica/psicologia , Qualidade de Vida , Índice de Gravidade de Doença , Criança , Estudos de Coortes , Feminino , Seguimentos , Humanos , Masculino
13.
BMC Public Health ; 21(1): 873, 2021 05 06.
Artigo em Inglês | MEDLINE | ID: mdl-33957899

RESUMO

BACKGROUND: People affected by leprosy are at increased risk of ulcers from peripheral nerve damage. This in turn can lead to visible impairments, stigmatisation and economic marginalisation. Health care providers suggest that patients should be empowered to self-manage their condition to improve outcomes and reduce reliance on services. Self-care involves carrying out personal care tasks with the aim of preventing disabilities or preventing further deterioration. Self-help, on the other hand, addresses the wider psychological, social and economic implications of leprosy and incorporates, for example, skills training and microfinance schemes. The aim of this study, known as SHERPA (Self-Help Evaluation for lepRosy and other conditions in NePAl) is to evaluate a service intervention called Integrated Mobilization of People for Active Community Transformation (IMPACT) designed to encourage both self-care and self-help in marginalised people including those affected by leprosy. METHODS: A mixed-method evaluation study in Province 5, Nepal comprising two parts. First, a prospective, cluster-based, non-randomised controlled study to evaluate the effectiveness of self-help groups on ulcer metrics (people affected by leprosy only) and on four generic outcome measures (all participants) - generic health status, wellbeing, social integration and household economic performance. Second, a qualitative study to examine the implementation and fidelity of the intervention. IMPACT: This research will provide information on the effectiveness of combined self-help and self-care groups, on quality of life, social integration and economic wellbeing for people living with leprosy, disability or who are socially and economically marginalised in low- and middle- income countries.


Assuntos
Hanseníase , Qualidade de Vida , Análise por Conglomerados , Estudos de Coortes , Humanos , Hanseníase/terapia , Nepal , Estudos Prospectivos , Autoeficácia
14.
Indian J Dermatol Venereol Leprol ; 87(3): 341-347, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33943064

RESUMO

BACKGROUND: Lichen planus pigmentosus can have a negative impact on the quality of life; however, this has not been studied in detail. OBJECTIVES: To study the quality of life in patients with lichen planus pigmentosus and compare it with patients with vitiligo and melasma. METHODS: This was a cross-sectional study conducted in a tertiary-care center in north India from January 2018 to May 2019. Patients ≥ 18 years of age with lichen planus pigmentosus (n = 125), vitiligo (n = 113) and melasma (n = 121) completed the Dermatology Life Quality Index (DLQI) questionnaire and answered a global question on the effect of disease on their lives. In addition, patients with vitiligo completed the Vitiligo Impact Scale (VIS)-22 questionnaire, while those with lichen planus pigmentosus and melasma filled a modified version of VIS-22. RESULTS: The mean DLQI scores in patients with lichen planus pigmentosus, vitiligo and melasma were 10.9 ± 5.95, 9.73 ± 6.51 and 8.39 ± 5.92, respectively, the difference being statistically significant only between lichen planus pigmentosus and melasma (P < 0.001). The corresponding mean modified VIS-22/VIS-22 scores were 26.82 ± 11.89, 25.82 ± 14.03 and 18.87 ± 11.84, respectively. This difference was statistically significant between lichen planus pigmentosus and melasma, and between vitiligo and melasma (P < 0.001 for both). As compared to vitiligo, patients with lichen planus pigmentosus had a significantly greater impact on "symptoms and feelings" domain (P < 0.001) on DLQI, and on "social interactions" (P = 0.02) and "depression" (P = 0.04) domains on VIS-22. As compared to melasma, patients with lichen planus pigmentosus had significantly higher scores for "symptoms and feelings," "daily activities," "leisure" and "work and school" domains of DLQI, and all domains of VIS-22. Female gender was more associated with impairment in quality of life in patients with lichen planus pigmentosus, while lower education, marriage, younger age and increasing disease duration showed a directional trend. LIMITATIONS: Use of DLQI and modified version of VIS-22 scales in the absence of a pigmentary disease-specific quality-of-life instrument. CONCLUSION: Patients with lichen planus pigmentosus have a significantly impaired quality of life. The psychosocial burden of lichen planus pigmentosus is quantitatively similar to that of vitiligo, but significantly greater than melasma.


Assuntos
Líquen Plano/psicologia , Melanose/psicologia , Transtornos da Pigmentação/psicologia , Qualidade de Vida , Vitiligo/psicologia , Adolescente , Adulto , Idoso , Estudos Transversais , Escolaridade , Feminino , Humanos , Índia , Líquen Plano/complicações , Masculino , Estado Civil , Pessoa de Meia-Idade , Transtornos da Pigmentação/etiologia , Fatores Sexuais , Centros de Atenção Terciária , Adulto Jovem
15.
PLoS Negl Trop Dis ; 15(4): e0009329, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-33798199

RESUMO

BACKGROUND: Leprosy and leprosy-related stigma can have a major impact on psychosocial wellbeing of persons affected and their family members. Resilience is a process that incorporates many of the core skills and abilities which may enable people to address stigma and discrimination. The current study aimed to develop and pilot an intervention to strengthen individual and family resilience against leprosy-related discrimination. METHODOLOGY: We used a quasi-experimental, before-after study design with a mixed methods approach. The 10-week family-based intervention was designed to strengthen the resilience of individuals and families by enhancing their protective abilities and capacity to overcome adversity. The study was conducted in two sites, urban areas in Telangana state, and in rural areas in Odisha state, India. Persons affected and their family members were included using purposive sampling. Two questionnaires were used pre-and post-intervention: the Connor-Davidson Resilience Scale (CD-RISC, maximum score 100, with high scores reflecting greater resilience) and the WHOQOL-BREF (maximum score of 130, with higher scores reflecting higher quality of life). In addition, semi-structured interviews were conducted post-intervention. Data were collected at baseline, a few weeks after completion of the intervention, and in the Odisha cohort again at six months after completion. Paired t-tests measured differences pre- and post- intervention. Qualitative data were thematically analysed. FINDINGS: Eighty participants across 20 families were included in the study (23 persons affected and 57 family members). We found a significant increase in CD-RISC scores for persons affected and family members from Odisha state (baseline 46.5, first follow-up 77.0, second follow-up 70.0), this improvement was maintained at six-month follow-up. There was no increase in CD-RISC scores post-intervention among participants from Telangana state. WHOQOL-BREF scores were significantly higher at follow-up for persons affected in both states, and for family members in Odisha state. No families dropped out of the study. In the qualitative feedback, all participants described drawing benefit from the programme. Participants especially appreciated the social dimensions of the intervention. CONCLUSION: This pilot study showed that the 10-week family-based intervention to strengthen resilience among persons affected by leprosy and their family members was feasible, and has the potential to improve resilience and quality of life. A large-scale efficacy trial is necessary to determine the effectiveness and long-term sustainability of the intervention.


Assuntos
Saúde da Família , Família/psicologia , Hanseníase/psicologia , Qualidade de Vida/psicologia , Resiliência Psicológica , Adulto , Feminino , Humanos , Índia , Masculino , Pessoa de Meia-Idade , Projetos Piloto , Pesquisa Qualitativa , Estigma Social , Inquéritos e Questionários , Adulto Jovem
16.
Int J Mycobacteriol ; 10(1): 31-36, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33707369

RESUMO

Background: "Quality of life (QOL)" is relatively a new concept, which originates from the World Health Organization (WHO) "health" definition. The WHO defines "health" as a state of complete physical, mental, and social well-being and not merely an absence of disease or infirmity. It introduces a word, "well-being," which has two components, one the objective component and the second subjective component. The objective component mainly includes all the material possession by an individual, whereas the subjective component includes the perception of health by an individual, i.e., "QoL." It has been observed that most of the persons affected by Hansen's Disease (leprosy) have good economic conditions, but they continue to suffer from social, psychological, and physical problems which makes their life miserable. Hence, an attempt has been made to assess their QOL and factors determining them. Method: A convenient sampling technique was used and 114 persons affected with Hansen's disease were studied. The study was conducted for a period of 1 year from November 2012 to October 2013. QOL was assessed using the WHO QOL-BREF Questionnaire and mental health status by the Self-Reporting Questionnaire. The results were obtained using SPSS 17.0 software, statistical tests such as Chi-square test, ANOVA, and standard multiple logistic regression analysis were used. Results: Quality of leprosy patients was poor. The mean WHOQOL-BREF total score was below average (mean score <65). Physical QOL of leprosy was more affected in females (mean WHOQOL-BREF score = 20.80). Mental distress was more prevalent in males (74.6%) compared to females (25.4%). Presence of deformities, female sex of the patient, and advanced age of the patient showed the greatest association with adverse QOL. Conclusion: Presence of physical disabilities or deformities and advanced age of leprosy patients adversely affect QOL of leprosy patients, whereas low level of education and poor socioeconomic status do not have a significant effect on QOL.


Assuntos
Hanseníase , Qualidade de Vida , Estudos Transversais , Feminino , Humanos , Índia , Masculino , Inquéritos e Questionários , Organização Mundial da Saúde
17.
PLoS Negl Trop Dis ; 15(3): e0009209, 2021 03.
Artigo em Inglês | MEDLINE | ID: mdl-33651814

RESUMO

BACKGROUND: Leprosy is a chronic bacterial infection caused by Mycobacterium leprae, which may lead to physical disability, stigma, and discrimination. The chronicity of the disease and disabilities are the prime contributors to the disease burden of leprosy. The current figures of the disease burden in the 2017 global burden of disease study, however, are considered to be under-estimated. In this study, we aimed to systematically review the literature and perform individual patient data meta-analysis to estimate new disability weights for leprosy, using Health-Related Quality of Life (HRQOL) data. METHODOLOGY/PRINCIPAL FINDINGS: The search strategy included all major databases with no restriction on language, setting, study design, or year of publication. Studies on human populations that have been affected by leprosy and recorded the HRQOL with the Short form tool, were included. A consortium was formed with authors who could share the anonymous individual-level data of their study. Mean disability weight estimates, sorted by the grade of leprosy disability as defined by WHO, were estimated for individual participant data and pooled using multivariate random-effects meta-analysis. Eight out of 14 studies from the review were included in the meta-analysis due to the availability of individual-level data (667 individuals). The overall estimated disability weight for grade 2 disability was 0.26 (95%CI: 0.18-0.34). For grade 1 disability the estimated weight was 0.19 (95%CI: 0.13-0.26) and for grade 0 disability it was 0.13 (95%CI: 0.06-0.19). The revised disability weight for grade 2 leprosy disability is four times higher than the published GBD 2017 weights for leprosy and the grade 1 disability weight is nearly twenty times higher. CONCLUSIONS/SIGNIFICANCE: The global burden of leprosy is grossly underestimated. Revision of the current disability weights and inclusion of disability caused in individuals with grade 0 leprosy disability will contribute towards a more precise estimation of the global burden of leprosy.


Assuntos
Pessoas com Deficiência , Carga Global da Doença , Hanseníase/patologia , Qualidade de Vida , Humanos
18.
Indian J Dermatol Venereol Leprol ; 87(2): 154-175, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33769736

RESUMO

Dermatophytosis has attained unprecedented dimensions in recent years in India. Its clinical presentation is now multifarious, often with atypical morphology, severe forms and unusually extensive disease in all age groups. We hesitate to call it an epidemic owing to the lack of population-based prevalence surveys. In this part of the review, we discuss the epidemiology and clinical features of this contemporary problem. While the epidemiology is marked by a stark increase in the number of chronic, relapsing and recurrent cases, the clinical distribution is marked by a disproportionate rise in the number of cases with tinea corporis and cruris, cases presenting with the involvement of extensive areas, and tinea faciei.


Assuntos
Tinha/epidemiologia , Distribuição por Idade , Uso Indevido de Medicamentos , Escolaridade , Glucocorticoides/efeitos adversos , Humanos , Doença Iatrogênica , Incidência , Índia/epidemiologia , Ocupações , Prevalência , Qualidade de Vida , Recidiva , Fatores de Risco , População Rural , Distribuição por Sexo , Classe Social , Tinha/diagnóstico , População Urbana
19.
PLoS Negl Trop Dis ; 15(2): e0009167, 2021 02.
Artigo em Inglês | MEDLINE | ID: mdl-33600453

RESUMO

A key issue for persons with leprosy-, lymphatic filariasis- and podoconiosis-related disabilities is the life-long need to practice self-management routines. This is difficult to sustain without regular encouragement and support of others. Family-based support may be a sustainable and feasible strategy to practice self-management routines. This proof of concept study aimed to develop and pilot a family-based intervention to support prevention and self-management of leprosy, lymphatic filariasis and podoconiosis-related disabilities in Ethiopia. We used a quasi-experimental pre/post intervention study design with a mixed methods approach. The study population included persons affected by leprosy, lymphatic filariasis and podoconiosis and their family members. All persons affected had visible impairments due to their condition. We collected physical impairment outcomes, data on activity limitations, stigma and family quality of life using the SALSA scale (range 0-80), the SARI stigma scale (range 0-63) and the Beach Centre Family Quality of Life scale (range 0-125) and conducted in-depth interviews and focus group discussions. Quantitative data were analysed using paired t-tests, unequal variances t-tests, linear regression and binary logistic regression. Qualitative data were coded using open, inductive coding and content analysis. The family-based intervention consisted of self-management of disabilities, awareness raising and socio-economic empowerment. The intervention was delivered over several monthly group meetings over the course of several months. A total of 275 (100%) persons affected attended at least one session with a family member, and 215 (78%) attended at least three sessions. There was no significant improvement in eye and hand problems after the intervention. However, foot and leg impairments, number of acute attacks, lymphedema and shoe wearing all significantly improved at follow-up. In addition, family quality of life significantly improved from 67.4 at baseline to 89.9 at follow-up for family members and from 76.9 to 84.1 for persons affected (p<0.001). Stigma levels significantly decreased from 24.0 at baseline to 16.7 at follow-up (p<0.001). Activity levels improved, but not significantly. This proof of concept study showed that the family-based intervention had a positive effect on impairments and self-management of disabilities, family quality of life and stigma. We recommend a large-scale efficacy trial, using a randomised controlled trial and validated measurement tools, to determine its effectiveness and long-term sustainability.


Assuntos
Pessoas com Deficiência , Filariose Linfática , Elefantíase , Hanseníase , Autogestão/métodos , Adulto , Etiópia , Família , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Projetos Piloto , Estudo de Prova de Conceito , Qualidade de Vida , Estigma Social
20.
Med J Malaysia ; 76(1): 56-60, 2021 01.
Artigo em Inglês | MEDLINE | ID: mdl-33510110

RESUMO

OBJECTIVE: To determine the Dermatology Life Quality Index (DLQI) among the subtypes of leprosy and to examine correlation with deformity and lepra reactions. METHODS: This was a cross-sectional study done at Dermatology Outpatient Clinic, Queen Elizabeth Hospital and two health clinics in Kota Kinabalu between 1st April 2019 and 30th November 2019. A standardised case report form was formulated to collect the demographic data and disease profile of the leprosy patients. The quality of life (QoL) was assessed using Dermatology Life Quality Index (DLQI) questionnaire. RESULTS: A total of 54 patients were included with a male to female ratio of 2.4:1 (38 males and 16 females). The mean DLQI score was 8.31±6.15. The difference between the mean DLQI scores among the leprosy subtypes was not significant. The most affected domain was symptoms and feeling followed by daily activities and leisure. Twenty-one patients (38.9%) had facial deformity and they were found to have significantly higher DLQI score. WHO grade 1 and 2 disability were observed in 37 patients (68.5%) with higher DLQI score compared to those without any disability. More than half of patients with MB leprosy (52.2%) developed lepra reactions but the difference of mean DLQI scores were not significant. CONCLUSIONS: Leprosy-related disabilities may predispose patients to develop psychosocial problems which may have negative impact on QoL. Thus, periodic assessment of QoL should be incorporated into the management of leprosy patients.


Assuntos
Hanseníase , Qualidade de Vida , Estudos Transversais , Feminino , Humanos , Hanseníase/epidemiologia , Malásia , Masculino , Índice de Gravidade de Doença , Inquéritos e Questionários
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