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1.
Acta Derm Venereol ; 104: adv40384, 2024 Sep 10.
Artigo em Inglês | MEDLINE | ID: mdl-39254291

RESUMO

Self-stigma beliefs are common among people with visible chronic skin diseases and can negatively affect their quality of life and psychosocial wellbeing. Hence, evidence-based interventions are urgently needed. The objective for this systematic review was to summarize research on available interventions and evaluate their benefits and limitations. Following PRISMA guidelines, we conducted an electronic database search of four databases (EMBASE, PsycINFO, PubMed, Web of Science). Studies were eligible if they (a) investigated interventions to reduce self-stigma in adults with chronic skin disease, (b) were original empirical articles, and (c) were written in English or German. Two independent reviewers conducted the abstract and full text screening as well as data extraction. The quality of the included studies was evaluated using the Critical Appraisal Skills Programme checklists. The initial search yielded 5811 abstracts; of which, 23 records were eligible. Studies addressed a broad range of skin conditions, and interventions ranged from social skills training, counselling and self-help to psychosocial and behavioural interventions. Overall, interventions had mostly positive effects on self-stigma and related constructs. However, the study quality was heterogeneous, and further efforts to develop, thoroughly evaluate and implement interventions tackling self-stigma in multiple skin conditions and languages are warranted.


Assuntos
Qualidade de Vida , Autoimagem , Dermatopatias , Estigma Social , Humanos , Dermatopatias/psicologia , Dermatopatias/terapia , Conhecimentos, Atitudes e Prática em Saúde , Doença Crônica
2.
PLoS Negl Trop Dis ; 18(8): e0012391, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-39093848

RESUMO

BACKGROUND: Neglected Tropical Diseases (NTDs) disproportionately affect marginalised groups within impoverished communities, conferring devastating physical, financial and psychosocial effects. Skin-NTDs (SNTDs) are uniquely stigmatising due to their visible nature, rendering affected individuals vulnerable to psychosocial risk and the associated decline in social participation, quality of life and mental health. In response to knowledge gaps identified by current global efforts for integrated control of SNTDs this review gathers existing evidence on the psychosocial effects of SNTDs, with consideration given to the influence of gender. METHODS: The study protocol is registered with PROSPERO (CRD42022336676). Data was collected from Embase, Global Health, Medline and Web of Science, with additional articles identified through Google Scholar and bibliography tracking. Qualitative studies published in English between 2005 and 2024 reporting men's and women's experiences with SNTDs were searched. Appropriate data from each included study were inputted into NVivo software to facilitate thematic synthesis. Descriptive and analytic themes were generated through line-by-line coding using an inductive approach. RESULTS: 27 articles of high and moderate quality were included. They pertained to buruli ulcer, cutaneous leishmaniasis, leprosy, lymphatic filariasis, tungiasis, onchocerciasis, schistosomiasis and podoconiosis. Men and women across SNTDs and contexts reported debilitating physical symptoms which impaired their ability to work, socialise and carry out usual daily activities. Some felt (at least initially) well supported by partners and relatives, whereas most experienced avoidance, abandonment and even violence, with women incurring worse SNTD-related social consequences. Many men and most women experienced stigma, with discriminatory behaviours largely attributed to fear of infection, decreased ability to perform gender-specific daily activities, and the perceived association between SNTDs and sinfulness. Self-reported impacts of SNTDs on men's and women's mental wellbeing included low mood, anxiety, low self-esteem, and suicidal ideation. Disease-specific knowledge, early treatment, social support, and disease acceptance were mentioned as protective factors. CONCLUSION: SNTDs cause significant psychosocial harms, particularly for women. Implementing myth-busting and contact-based educational campaigns and improving access to treatment and to livelihood opportunities and social protection schemes for men and women with a SNTD will help prevent and mitigate these.


Assuntos
Doenças Negligenciadas , Qualidade de Vida , Humanos , Doenças Negligenciadas/psicologia , Qualidade de Vida/psicologia , Masculino , Feminino , Estigma Social , Dermatopatias/psicologia , Saúde Mental , Medicina Tropical
3.
Skin Res Technol ; 30(9): e70044, 2024 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-39206801

RESUMO

BACKGROUND: This report evaluates the potential of artificial intelligence (AI) in psychodermatology, emphasizing its ability to enhance diagnostic accuracy, treatment efficacy, and personalized care. Psychodermatology, which explores the connection between mental health and skin disorders, stands to benefit from AI's advanced data analysis and pattern recognition capabilities. MATERIALS AND METHODS: A literature search was conducted on PubMed and Google Scholar, spanning from 2004 to 2024, following PRISMA guidelines. Studies included demonstrated AI's effectiveness in predicting treatment outcomes for body dysmorphic disorder, identifying biomarkers in psoriasis and anxiety disorders, and refining therapeutic strategies. RESULTS: The review identified several studies highlighting AI's role in improving treatment outcomes and diagnostic accuracy in psychodermatology. AI was effective in predicting outcomes for body dysmorphic disorder and identifying biomarkers related to psoriasis and anxiety disorders. However, challenges such as limited dermatologist knowledge, integration difficulties, and ethical concerns regarding patient privacy were noted. CONCLUSION: AI holds significant promise for advancing psychodermatology by improving diagnostic precision, treatment effectiveness, and personalized care. Nonetheless, realizing this potential requires large-scale clinical validation, enhanced dataset diversity, and robust ethical frameworks. Future research should focus on these areas, with interdisciplinary collaboration essential for overcoming current challenges and optimizing patient care in psychodermatology.


Assuntos
Inteligência Artificial , Dermatologia , Dermatopatias , Humanos , Dermatologia/métodos , Dermatopatias/terapia , Dermatopatias/psicologia , Transtornos Dismórficos Corporais/terapia , Transtornos Dismórficos Corporais/psicologia , Psoríase/terapia , Psoríase/psicologia
4.
Acta Derm Venereol ; 104: adv40657, 2024 Aug 23.
Artigo em Inglês | MEDLINE | ID: mdl-39175451

RESUMO

Skin conditions carry a significant physical, psychological, and social burden. People with skin conditions often engage in health-threatening behaviours that can worsen symptoms and increase cardiovascular disease risk. However, access to dedicated psychological and behaviour-change support is limited. The impact, management, and existing psychological support available to adults living with skin conditions was qualitatively explored to inform the development of a psychologically supportive digital intervention. Qualitative research involving a hybrid inductive- deductive approach was performed. Data collection and analysis were theoretically informed by the Common-Sense Model of Self-Regulation. Eight synchronous online group interviews with 43 English-speaking adults (≥ 18 years) with a range of skin conditions were conducted. Data were analysed using Reflexive Thematic Analysis. Three superordinate themes are outlined: (i) visibility underpinning life course impairment, (ii) seeking control amid uncertainty, and (iii) existing support for people with skin conditions. Skin conditions carry a substantial psychological burden, yet dermatology service provision is sub-optimal and patients often resort to seeking support from unreliable sources. Psychological support can have benefits, but barriers exist. This study reinforces the need for high-quality psychological support, and that patients wanted digital means to support effective self- management.


Assuntos
Pesquisa Qualitativa , Dermatopatias , Humanos , Adulto , Feminino , Masculino , Dermatopatias/psicologia , Dermatopatias/terapia , Pessoa de Meia-Idade , Idoso , Efeitos Psicossociais da Doença , Adulto Jovem , Apoio Social , Entrevistas como Assunto
5.
Dermatologie (Heidelb) ; 75(9): 704-710, 2024 Sep.
Artigo em Alemão | MEDLINE | ID: mdl-39117980

RESUMO

BACKGROUND: Global climate and environmental changes impose a significant impact on human health by increasing prevalences of chronic and acute skin diseases. Climate-associated environmental changes can also trigger or intensify mental illnesses independently of a skin disease. AIM: Discussion of the effects of the climate and environmental changes on dermatological diseases applying the biopsychosocial model. MATERIALS AND METHODS: A selective literature search in the PubMed database and other sources was conducted. RESULTS: The biopsychosocial model considers complex interactions between biological, psychological, and social factors. In view of the consequences of climate and environmental changes, an extension of the model is proposed for the first time in order to address new challenges. The modified presentation supports the understanding of the dynamics and underscores that in dermatological care not only direct health effects of climate and environmental changes have to be dealt with, but also with an increasing number of mental illnesses, which in turn are to be regarded as direct and indirect health effects. CONCLUSION: Coping with the predicted increase in the burden of disease and the decline in the available labor force associated with demographic change poses a major challenge. In order to maintain the functionality of the healthcare system, the prompt implementation of resource-efficient, sustainable measures in all areas of society is essential. The integrative consideration of dermatological and psychological complaints in the context of climate and environmental changes requires the adaptation of content for the education, training, and continuing education of specialists.


Assuntos
Mudança Climática , Transtornos Mentais , Dermatopatias , Humanos , Transtornos Mentais/epidemiologia , Transtornos Mentais/psicologia , Transtornos Mentais/etiologia , Dermatopatias/psicologia , Dermatopatias/epidemiologia , Dermatopatias/etiologia , Dermatologia
6.
Sci Rep ; 14(1): 16272, 2024 07 15.
Artigo em Inglês | MEDLINE | ID: mdl-39009662

RESUMO

Skin diseases are prevalent globally and can have detrimental effects on the individual's health-related quality of life (HRQoL). The treatment of dermatological patients typically focuses on clinical signs and symptoms and a subjective view of the impact of the disease on the patient's life. Assessing quality of life can help provide patients with better service, by acknowledging their real needs and interfering with treatment decisions. The aim of the study was therefore to assess quality of life of dermatology outpatients and its associated factors. An analytical cross-sectional study was conducted in the dermatology clinic of Halibet National Referral Hospital in Asmara, Eritrea. HRQoL data were collected between May 6 and August 18, 2022 using a validated standard tool (Skindex-29). Descriptive statistics, logistic regression and paired t-test were employed using Statistical Package for Social Sciences (Version-26.0). A total of 375 dermatology clinic out-patients with a median age of 29 (Interquartile range: 25) were included in the study. The most commonly seen skin diseases were eczema, seborrhoeic dermatitis and tinea pedis. Emotion, symptom, and functioning domains of HRQoL were severely impaired in 75.7%, 50.4% and 57.6% of all dermatology outpatients, respectively. More than half of the respondents (57.9%) had a severely impaired overall HRQoL. In the overall HRQoL, being a rural resident [Adjusted Odds Ratio (AOR) 1.98, 95% CI 1.18, 3.33] and presence of chronic illness (AOR 2.16, 95% CI 1.22, 3.82) were significantly associated with severely impaired overall quality of life. A significantly higher mean score (p < 0.001) was observed in emotion [Mean (M) = 55.60, Standard Deviation (SD) = 21.0] as compared to functioning (M = 46.89, SD = 21.2). On the other hand, significantly higher mean score (p < 0.001) was observed on symptom (M = 54.08, SD = 20.5) as compared to functioning (M = 46.89, SD = 21.2). Skin diseases severely affected the emotion, functioning, and symptom domains of health-related quality of life. This highlights the importance of providing physical and psychosocial support to patients with dermatologic problems.


Assuntos
Pacientes Ambulatoriais , Qualidade de Vida , Dermatopatias , Humanos , Masculino , Feminino , Adulto , Pacientes Ambulatoriais/psicologia , Eritreia , Dermatopatias/psicologia , Estudos Transversais , Pessoa de Meia-Idade , Adulto Jovem , Dermatologia , Adolescente , Inquéritos e Questionários , Encaminhamento e Consulta
7.
J Prev (2022) ; 45(4): 611-649, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38822990

RESUMO

The changes in human lifestyle over the past few decades have impacted the prevalence of skin diseases within different societies. Skin diseases may result in various physical and mental disorders. The most common mental disorders observed among the patients are stress, anxiety, and depression. This study aims to investigate the global prevalence of anxiety, depression, and stress in patients with skin diseases. In this Systematic Review and Meta-Analysis study, the PubMed, Scopus, Science Direct, Embase, Web of science, and Google Scholar repositories were searched without a lower time limit. Heterogeneity among the identified studies was examined using the I2 index, and accordingly random effects model was adopted for analysis. Data analysis was conducted within the Comprehensive Meta-Analysis software (v. 2). In total, 113 studies were included for the final analysis. The overall pooled prevalence of stress, depression, and anxiety in skin disease patients was found to be 39.4%, 27.2% and 28.8%, respectively. Among patients with psoriasis, acne, vitiligo or atopic dermatitis diseases, the highest number of patients suffering from stress was related to patients with acne (75.7%). The highest prevalence of depression, and anxiety was reported in patients with vitiligo (38.3%) and acne (36.5%), respectively. Considering the high prevalence of mental disorders among patients with skin diseases and recognising the impacts of mental health challenges on patients' well-being, the findings of this study provide valuable insights for identifying specific populations that require targeted interventions for the diagnosis, treatment, and prevention of mental illnesses. Accordingly, healthcare policymakers should incorporate psychological treatment and support measures as integral components of comprehensive care strategies for patients with skin diseases.


Assuntos
Ansiedade , Depressão , Dermatopatias , Estresse Psicológico , Humanos , Dermatopatias/epidemiologia , Dermatopatias/psicologia , Prevalência , Estresse Psicológico/epidemiologia , Depressão/epidemiologia , Depressão/psicologia , Ansiedade/epidemiologia , Saúde Global
8.
Arch Dermatol Res ; 316(7): 339, 2024 Jun 07.
Artigo em Inglês | MEDLINE | ID: mdl-38847876

RESUMO

Itch is a common symptom of dermatologic diseases associated with significant impairment of health-related quality of life (QoL). This study reveals disparities in itch symptom experience and itch impact on QoL. A retrospective study of patient-reported outcome measure (PRO) data (ItchyQoL, Itch NRS, Pain Interference, Anxiety) for 387 outpatient dermatology visits to characterize the impact of itch on patients' QoL and itch symptom experience based on skin color in patients with dermatologic disease. Most patients were Caucasian females (67%) with mean age of 48 years. Correlative analyses showed mild itch associated with emotional impacts on QoL (p < 0.01), while severe itch associated with functional and emotional impacts on QoL (p < 0.01). African American (AA) patients reported more "severe-range" answers for 15 (68%) ItchyQoL items and had higher ItchyQoL mean scores (p = 0.001). ItchyQoL demonstrated an emotional impact on QoL by mild itch, but a functional and emotional impact on QoL by severe itch. Further, AAs suffered from greater itch-related impairment in QoL than Caucasian patients, especially due to scarring and sleeplessness.


Assuntos
Negro ou Afro-Americano , Medidas de Resultados Relatados pelo Paciente , Prurido , Qualidade de Vida , Índice de Gravidade de Doença , População Branca , Humanos , Prurido/psicologia , Prurido/diagnóstico , Prurido/etiologia , Feminino , Qualidade de Vida/psicologia , Pessoa de Meia-Idade , Masculino , Estudos Retrospectivos , Adulto , População Branca/psicologia , População Branca/estatística & dados numéricos , Negro ou Afro-Americano/psicologia , Negro ou Afro-Americano/estatística & dados numéricos , Dermatopatias/psicologia , Dermatopatias/diagnóstico , Idoso
11.
Arch Dermatol Res ; 316(6): 294, 2024 May 31.
Artigo em Inglês | MEDLINE | ID: mdl-38819612

RESUMO

Dermatological conditions are one of the most common reasons for clinical visits. Not only can they have a profound effect on patients' cosmetic appearances, but they also have a notable impact on their self-esteem, confidence, and body image, ultimately causing psychological distress. As social networking platforms become the new public space for discussion, patients have transitioned from in-person support groups to seeking online advice, support, and guidance. We conducted queries across various social networking platforms to identify and analyze active social networking support groups for common dermatological conditions. Thirty-six online support groups were identified for the top four dermatological conditions with the highest disability-adjusted life years (DALYs). We analyzed, recorded, and categorized each group according to target dermatological condition, social networking platform, support group host, engagement rate, and content of posts. In the groups identified, the majority were patient-driven (88.89%). When evaluating the engagement activity and frequency, 77.78% (n = 28) of groups had daily posts and 22.22% (n = 8) posted weekly. Additionally, we discovered a notable feature among support groups on Facebook and Reddit being more interactive and collaborative. This underscores the importance of enabling patients with dermatological conditions to generate posts and engage in open discourse, rather than absorbing single-user generated content from other popular platforms. Understanding the current landscape of social networking support groups can aid clinicians in disseminating information and resources for patients to create communities with other patients.


Assuntos
Grupos de Autoajuda , Dermatopatias , Rede Social , Humanos , Dermatopatias/psicologia , Dermatopatias/terapia , Mídias Sociais/estatística & dados numéricos , Apoio Social , Redes Sociais Online
13.
JAMA Dermatol ; 160(6): 621-630, 2024 Jun 01.
Artigo em Inglês | MEDLINE | ID: mdl-38656377

RESUMO

Importance: Chronic skin disorders in children frequently are visible and can cause stigmatization. However, the extent of stigmatization from chronic skin disease and association with mental health needs further study. Objective: To examine the extent of stigma, dependence on disease visibility and severity, and association with mental health and quality of life (QOL) in chronic pediatric skin disease. Design, Setting, and Participants: A cross-sectional, single-visit study was conducted at 32 pediatric dermatology centers in the US and Canada from November 14, 2018, to November 17, 2021. Participants included patients aged 8 to 17 years with chronic skin disease and 1 parent. Main Outcomes and Measures: Using the Patient-Reported Outcomes Measurement Instrumentation System (PROMIS) Stigma-Skin, the extent of stigma with child-, caregiver-, and physician-assessed disease visibility (primary outcome) and severity was compared, as well as reduced QOL (assessed by Skindex-Teen), depression, anxiety, and poor peer relationships (PROMIS child and proxy tools) (secondary outcomes). Results: The study included 1671 children (57.9% female; mean [SD] age, 13.7 [2.7] years). A total of 56.4% participants had self-reported high disease visibility and 50.5% had moderate disease severity. Stigma scores significantly differed by level of physician-assessed and child/proxy-assessed disease visibility and severity. Among children with chronic skin disorders, predominantly acne, atopic dermatitis, alopecia areata, and vitiligo, only 27.0% had T scores less than 40 (minimal or no stigma) and 43.8% had at least moderate stigma (T score ≥45) compared with children with a range of chronic diseases. Stigma scores correlated strongly with reduced QOL (Spearman ρ = 0.73), depression (ρ = 0.61), anxiety (ρ = 0.54), and poor peer relationships (ρ = -0.49). Overall, 29.4% of parents were aware of bullying of their child, which was strongly associated with stigma (Cohen d = -0.79, with children who were not bullied experiencing lower levels of stigma). Girls reported more stigma than boys (Cohen d = 0.26). Children with hyperhidrosis and hidradenitis suppurativa were most likely to have increased depression and anxiety. Conclusions and Relevance: The findings of this study suggest that physician assessment of disease severity and visibility is insufficient to evaluate the disease impact in the patient/caregiver. Identifying stigmatization, including bullying, and tracking improvement through medical and psychosocial interventions may be a key role for practitioners.


Assuntos
Saúde Mental , Qualidade de Vida , Dermatopatias , Estigma Social , Humanos , Feminino , Masculino , Criança , Adolescente , Estudos Transversais , Dermatopatias/psicologia , Doença Crônica , Canadá , Estereotipagem , Índice de Gravidade de Doença , Depressão/epidemiologia , Depressão/psicologia , Depressão/etiologia , Estados Unidos , Ansiedade/psicologia , Ansiedade/epidemiologia , Ansiedade/etiologia , Medidas de Resultados Relatados pelo Paciente
14.
Dermatologie (Heidelb) ; 75(5): 386-391, 2024 May.
Artigo em Alemão | MEDLINE | ID: mdl-38639767

RESUMO

Skin diseases are complex and cannot be explained solely by genetic or environmental factors but are also significantly shaped by social influences. This review illuminates the bidirectional relationship between social factors and skin diseases, demonstrating how social determinants such as socioeconomic status, living environment, and psychosocial stress can influence the onset and progression of skin conditions. Simultaneously, it explores how skin diseases can affect individuals' social lives and work capability, leading to a cycle of social withdrawal and further deterioration of the condition. The paper describes the need for a holistic approach in dermatology that goes beyond the biomedical perspective and incorporates social factors to develop effective prevention and treatment strategies. The increasing prevalence of skin diseases in Europe and the expected rise in allergies due to climate change make the consideration of social determinants even more urgent. The findings of this review aim to raise awareness of the complex interconnections between social factors and skin health and contribute to reducing social disparities in skin health.


Assuntos
Dermatopatias , Fatores Socioeconômicos , Humanos , Dermatopatias/epidemiologia , Dermatopatias/psicologia , Dermatopatias/terapia , Determinantes Sociais da Saúde , Fatores Sociais , Fatores de Risco , Europa (Continente)/epidemiologia , Classe Social , Estresse Psicológico/epidemiologia
15.
Pediatr Dermatol ; 41(4): 671-673, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38500261

RESUMO

Down syndrome (DS) is associated with many dermatological conditions, including hidradenitis suppurativa, folliculitis, and alopecia areata. Despite the high incidence of skin conditions in this population, there are no quality of life (QoL) studies in the dermatology literature focused on patients with DS or their caregivers. The frequently used QoL assessment tool, the Dermatology Life Quality Index (DLQI), has yet to be studied in this population. This study addresses these disparities by capturing how various skin conditions affect the QoL of people with DS and their caregivers and assessing the utility of the DLQI.


Assuntos
Cuidadores , Síndrome de Down , Qualidade de Vida , Dermatopatias , Humanos , Cuidadores/psicologia , Masculino , Feminino , Criança , Adolescente , Adulto , Dermatopatias/psicologia , Inquéritos e Questionários , Adulto Jovem , Pré-Escolar , Pessoa de Meia-Idade
16.
J Eur Acad Dermatol Venereol ; 38(8): 1649-1661, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38468596

RESUMO

BACKGROUND: Itch as the most common symptom in dermatology has been shown to be related to psychological factors such as stress, anxiety and depression. Moreover, associations were found between perceived stigmatization and itch. However, studies investigating the differences between patients with dermatoses with and without itch regarding perceived stress, stigmatization, anxiety and depression are missing. Therefore, one of the aims of the second study of the European Society for Dermatology and Psychiatry (ESDaP study II) was to investigate these relationships in a large cohort of patients with different itchy dermatoses. RESULTS: 3399 patients with 14 different itchy dermatoses were recruited at 22 centres in 17 European countries. They filled in questionnaires to assess perceived stigmatization, stress, signs of clinically relevant anxiety or depression, itch-related quality of life, the overall health status, itch duration, frequency and intensity. The most significant association between the severity of itching and the perception of stress was observed among individuals with rosacea (correlation coefficient r = 0.314). Similarly, the strongest links between itch intensity and experiences of stigmatization, anxiety, and depression were found in patients with seborrheic dermatitis (correlation coefficients r = 0.317, r = 0.356, and r = 0.400, respectively). Utilizing a stepwise linear regression analysis, it was determined that within the entire patient cohort, 9.3% of the variation in itch intensity could be accounted for by factors including gender, levels of anxiety, depression, and perceived stigmatization. Females and individuals with elevated anxiety, depression, and perceived stigmatization scores reported more pronounced itch intensities compared to those with contrary attributes. CONCLUSION: This study underscores the connection between experiencing itch and its intensity and the psychological strain it places on individuals. Consequently, psychological interventions should encompass both addressing the itch itself and the interconnected psychological factors. In specific cases, it becomes imperative for dermatologists to direct individuals towards suitable healthcare resources to undergo further psychological assessment.


Assuntos
Ansiedade , Depressão , Prurido , Estresse Psicológico , Humanos , Prurido/psicologia , Depressão/psicologia , Feminino , Masculino , Estresse Psicológico/psicologia , Ansiedade/psicologia , Europa (Continente) , Pessoa de Meia-Idade , Adulto , Dermatopatias/psicologia , Qualidade de Vida , Estereotipagem , Inquéritos e Questionários , Idoso , Índice de Gravidade de Doença
17.
Pediatr Dermatol ; 41(4): 606-612, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38532574

RESUMO

BACKGROUND/OBJECTIVES: The Skindex-29 and Skindex-Teen assess dermatology-related quality of life among adults and adolescents, respectively. This study directly compared the same adolescents' responses to the Skindex-29 relative to Skindex-Teen in a predominantly American Indian and/or Alaska Native population. This population is underrepresented in medical research. Although skin-related quality-of-life issues are widespread, American Indian and/or Alaska Native adolescents are not well-represented in related studies. METHODS: Data were collected in-person by self-report survey at two regional powwows in Denver, Colorado in 2021 and 2022. Respondents completed the full Skindex-29 and Skindex-Teen (40 unique items total). RESULTS: Eighty-six adolescents, 12-17 years old, completed the survey. The majority (70.9%, 61/86) of respondents self-identified as American Indian and/or Alaska Native. Analyses were conducted with all respondent survey data. Nearly two-thirds (64.0%, 55/86) of our respondents had a Skindex-29 score that revealed their quality of life was impaired at least mildly by skin disease. The Skindex-29 and Skindex-Teen demonstrated good reliability; there was substantial concordance between responses to the two measures (r values ranged from 0.88 to 0.97 for similar subscales). Compared to younger adolescents (aged 12-14), older adolescents (aged 15-17) reported worse dermatology-related quality of life and emotional toll based on higher Skindex-29 total, Skindex-Teen total, Skindex-29 Emotional subscale, and Skindex-Teen Psychosocial Functioning subscale scores. CONCLUSIONS: American Indian and/or Alaska Native adolescents suffer from skin-related quality-of-life issues. The Skindex-Teen and Skindex-29 generated similar information regarding quality of life in young patients with skin disease. While the Skindex-Teen may be slightly more relevant to adolescents, these surveys were highly concordant. Both the Skindex-Teen and Skindex-29 exhibited frequent "never" responses to questions about impact of skin conditions on relationships with others and tendencies to stay home. Thus, careful attention should be paid to such questions to ensure their relevance to adolescents.


Assuntos
Qualidade de Vida , Adolescente , Criança , Feminino , Humanos , Masculino , Indígena Americano ou Nativo do Alasca/estatística & dados numéricos , Colorado , Autorrelato , Dermatopatias/etnologia , Dermatopatias/psicologia , Inquéritos e Questionários
18.
Dermatologie (Heidelb) ; 75(5): 392-399, 2024 May.
Artigo em Alemão | MEDLINE | ID: mdl-38532023

RESUMO

Health-related quality of life (HRQoL) is the most important patient-reported outcome in clinical trials and patient care. HRQoL is further considered as target variable in treatment guidelines and as outcome indicator in the evaluation of the quality of care. Numerous validated questionnaires are available for the assessment of HRQoL from the perspective of patients with skin diseases. However, many are of inadequate methodological quality, indicating the need for further research in the development of high-quality measurement instruments. The implementation of routine electronic HRQoL assessments is a promising approach.


Assuntos
Qualidade de Vida , Qualidade de Vida/psicologia , Humanos , Inquéritos e Questionários , Dermatopatias/terapia , Dermatopatias/psicologia , Dermatopatias/diagnóstico , Medidas de Resultados Relatados pelo Paciente
19.
Am J Clin Dermatol ; 25(3): 435-445, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38366030

RESUMO

Dermatologic adverse events resulting from oncologic therapy are common and negatively impact patients' quality of life. Dermatologic adverse events include toxicity of the skin, oral mucosa, nails, and hair and are seen with cytotoxic chemotherapy, targeted therapy, immunotherapy, and radiation therapy, with distinct patterns of dermatologic adverse events by drug class. Here, we review the literature on the impact of dermatologic adverse events on quality of life. Studies on quality of life in patients with cancer have relied on scales such as the Dermatologic Life Quality Index and Skindex to demonstrate the association between dermatologic adverse events and declining quality of life. This relationship is likely due to a variety of factors, including physical discomfort, changes to body image, decreased self-esteem, and an effect on social interactions. Addressing such quality-of-life concerns for patients with cancer is critical, not only for patients' well-being but also because decreased satisfaction with treatment can lead to discontinuation of treatment or dose reduction. Prophylactic treatment and early management of dermatologic adverse events by experienced dermatologists can alleviate the negative effects on quality of life and allow continuation of life-prolonging treatment.


Assuntos
Antineoplásicos , Neoplasias , Qualidade de Vida , Humanos , Neoplasias/tratamento farmacológico , Neoplasias/psicologia , Neoplasias/terapia , Neoplasias/complicações , Antineoplásicos/efeitos adversos , Dermatopatias/etiologia , Dermatopatias/psicologia , Radioterapia/efeitos adversos , Imagem Corporal/psicologia , Imunoterapia/efeitos adversos , Imunoterapia/métodos
20.
J Eur Acad Dermatol Venereol ; 38(7): 1373-1382, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38314863

RESUMO

BACKGROUND: Dermatoses represent a significant burden. Patients and their caregivers can turn to social media and digital communities to exchange with each other. These public exchanges constitute real-life data that can be analysed to better understand the patients' feelings and expectations, and the daily difficulties encountered. OBJECTIVE: An infodemiologic study of public testimonies of patients and caregivers related to five dermatoses: eczema, rosacea, vitiligo, acne and psoriasis, over a 3-year time frame (September 2018 to September 2021) in France. To identify main topics of discussion, encountered difficulties and unmet medical needs. METHODS: Data extraction was performed based on a list of pertinent keywords. Web-users' profiles were determined by a specifically trained machine learning algorithm. Encountered difficulties were identified by manual annotation based on a standardized search grid. Co-occurrence analysis of difficulties allowed contextualization of challenges and unmet needs for each dermatosis. RESULTS: A total of 20,282 messages coming from 16,800 web users was extracted. The main topics of discussion were 'Impact on self- image and self-confidence' (23.6%), 'Generic discussion about therapeutics' (23.3%) and 'Burden of others' gaze' (12.8%). The top three mentioned difficulties for the five targeted dermatoses were similar and focused on 'Fear of/and management of symptoms', 'Impact on/and mood management' and 'Damaged self-image'. CONCLUSION: This infodemiologic study highlighted the real-life management of five skin diseases by patients and their caregivers, who turned to social networks to openly express their suffering and seek solutions. The joined analysis of the five diseases enabled a common comprehension of what it is to live with a skin disease, from a patient-centric point of view. The specific analysis of each patient group objectified specific challenges, and main unmet medical needs.


Assuntos
Emoções , Dermatopatias , Mídias Sociais , Humanos , França , Dermatopatias/psicologia , Dermatopatias/terapia , Feminino , Masculino , Acne Vulgar/psicologia , Acne Vulgar/complicações , Rosácea/psicologia , Rosácea/terapia , Psoríase/psicologia , Eczema/psicologia , Eczema/terapia , Vitiligo/psicologia , Vitiligo/terapia , Adulto
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