RESUMO
BACKGROUND: The complexity, high prevalence, and substantial personal and socioeconomic burden collectively render atopic dermatitis (AD) a major public health concern. Using crowdsourced Internet data has the potential to provide unique insights into this concern, as demonstrated by several previous studies. However, a comprehensive comparison across European countries remains lacking. OBJECTIVES: The study aimed to investigate AD-related web searches across Europe to assess spatiotemporal variations and associations between disease-related and external factors. METHODS: AD-related web search data were extracted for 21 European countries between February 2019 and January 2023. Descriptive analysis and autocorrelation functions were performed to examine spatiotemporal patterns. Correlations (r) were used to evaluate the associations between web searches and disease-related, socioeconomic and meteorological data. RESULTS: Over 241 million AD-related web searches were identified, with search volume varying substantially among European countries (p < 0.001) and correlating with AD prevalence and disease burden (both r = 0.51, p = 0.019). Search volume increased between 2019 and 2023 in all countries and seasonally peaked in January and March. Negative correlations with median population age (r = -0.46, p = 0.039), number of general practitioners (r = -0.29, p = 0.226) and specialists (r = -0.27, p = 0.270) were observed. Moderate to strong correlations were found between search volume and cold, humid and windy weather with fewer sunshine hours, while higher online interest typically occurred 1-3 months after such weather conditions. CONCLUSION: The study highlights the great potential of online crowdsourced data analysis, for example, to investigate the impact of climate change or to identify unmet needs at a population level. Furthermore, the growing online interest in AD and the corresponding seasonal peaks emphasize the necessity of adapting treatment plans, intensifying public health campaigns, and disseminating reliable online information by governments and healthcare providers, especially during these periods.
Assuntos
Dermatite Atópica , Internet , Dermatite Atópica/epidemiologia , Humanos , Europa (Continente)/epidemiologia , Prevalência , Efeitos Psicossociais da Doença , Estações do Ano , CrowdsourcingRESUMO
BACKGROUND: Psoriasis is a chronic skin disorder with a high burden of disease. People affected with psoriasis increasingly use the internet for health-related reasons, especially those with younger age, higher education, and higher disease severity. Despite advantages such as enhancing the individuals' knowledge with the use of digital media for health-related issues, disadvantages were also present such as quality control, and variability in the individuals' health information literacy. While patients with psoriasis within medical settings generally trust physicians over digital media, they commonly withhold their web-based research findings from health care providers. OBJECTIVE: The study aims to (1) identify further factors associated with regular psoriasis-related internet use, (2) rank specific digital media platforms used, and (3) examine digital media within the physician-patient relationship among individuals with and without dermatological treatment. METHODS: A cross-sectional, questionnaire-based study was conducted among individuals with self-reported psoriasis in Germany between September 2021 and February 2022. Participants were recruited via digital media platforms and in person at a University Hospital Department of Dermatology in southern Germany. The questionnaire asked about demographic and medical information, individual psoriasis-related digital media use, and the impact of digital media on the physician-patient relationship. Data were analyzed descriptively, and logistic regression models were performed to assess the factors associated with regular psoriasis-related internet use. RESULTS: Among 321 individuals with a median age of 53 (IQR 41-61) years (nonnormally distributed; females: 195/321), female sex, shorter disease duration, moderate mental burden of disease, and good self-assessed psoriasis-related knowledge were associated with regular psoriasis-related internet use. Of the 188 participants with a mean age of 51.2 (SD 13.9) years (normally distributed) who used digital media 106 (56.4%) usually searched for information on psoriasis-based websites and 98 (52.1%) on search engines, primarily for obtaining information about the disease and therapy options, while social media were less frequently used (49/188, 26.1%). Nearly two-thirds of internet users (125/188) claimed that their physicians did not recommend digital media platforms. About 44% (82/188) of the individuals reported to seek for additional information due to the insufficient information provided by their physician. CONCLUSIONS: This study revealed the importance of digital media in the context of psoriasis, especially among women, individuals with shorter disease duration, and moderate mental disease severity. The lack of physicians' digital media recommendations despite their patients' desire to receive such and being more involved in health-related decisions seems to be a shortcoming within the physician-patient relationships. Physicians should guide their patients on digital media by recommending platforms with evidence-based information, thereby potentially creating an adequate framework for shared decision-making. Future research should focus on strategies to prevent the spread of false information on digital media and address the needs of patients and physicians to enhance health-related digital media offerings.
Assuntos
Relações Médico-Paciente , Psoríase , Humanos , Psoríase/psicologia , Psoríase/terapia , Estudos Transversais , Alemanha , Feminino , Masculino , Pessoa de Meia-Idade , Adulto , Inquéritos e Questionários , Internet , Mídias Sociais/estatística & dados numéricos , IdosoRESUMO
BACKGROUND AND OBJECTIVES: This study aimed to fill the gap of evidence-based data by examining the impact of health-related digital media use's impact on the patient-physician relationship and patient journey, with the goal of driving positive changes in office-based dermatological practice. PATIENTS AND METHODS: German individuals with skin conditions completed a questionnaire assessing health-related digital media use, eHealth literacy, impact of digital media use on the patient-physician relationship and patient journey, and sociodemographic and health characteristics from June to November 2022, followed by descriptive analysis and linear regressions. RESULTS: Overall, 919 participants were analyzed (median age: 47.00, interquartile range [28.00; 61.00] years, female: 53.6%, health-related digital media users: 56.8%). Google and online encyclopedias were commonly used before and after dermatological consultations. Online self-help groups were used by 75% of non-treated participants. Digital media use had no impact on the patient-physician relationship and a positive impact on the patient journey. Positive impacts were associated with higher eHealth literacy, satisfaction with digital media quality, importance of digital media, rural residence, high education, and trust in dermatologists. CONCLUSIONS: The potential of health-related digital media in office-based dermatological care necessitates the drive of an evidence-based digital health platform to improve eHealth literacy and satisfaction with the quality of digital media among affected individuals.
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Dermatologia , Letramento em Saúde , Humanos , Feminino , Pessoa de Meia-Idade , Estudos Transversais , Internet , Inquéritos e Questionários , Alemanha/epidemiologiaRESUMO
Biomarkers associated with the development of comorbidities in atopic dermatitis (AD) patients have been reported, but have not yet been systematically reviewed. Seven electronic databases were searched, from database inception to September 2021. English language randomized controlled trials, prospective and retrospective cohort, and case-control studies that investigated the association between a biomarker and the development of comorbidities in AD patients were included. Two authors independently screened the records for eligibility, one extracted all data, and critically appraised the quality of studies and risk of bias. Fifty six articles met the inclusion criteria, evaluating 146 candidate biomarkers. The most frequently reported biomarkers were filaggrin mutations and allergen specific-IgE. Promising biomarkers include specific-IgE and/or skin prick tests predicting the development of asthma, and genetic polymorphisms predicting the occurrence of eczema herpeticum. The identified studies and biomarkers were highly heterogeneous, and associated with predominately moderate-to-high risk of bias across multiple domains. Overall, findings were inconsistent. High-quality studies assessing biomarkers associated with the development of comorbidities in people with AD are lacking. Harmonized datasets and independent validation studies are urgently needed.
Assuntos
Dermatite Atópica , Humanos , Dermatite Atópica/epidemiologia , Dermatite Atópica/genética , Estudos Prospectivos , Estudos Retrospectivos , Biomarcadores , Imunoglobulina E , Ensaios Clínicos Controlados Aleatórios como AssuntoRESUMO
Psoriasis is a stigmatized skin disease. This randomized controlled trial aimed to evaluate an Instagram based stigma-reduction intervention targeting daily Instagram users aged 18 to 49 years without psoriasis. After stratification for baseline characteristics (t0), stigmatization of psoriasis was assessed using a questionnaire and a photo-rating task immediately before (t1) and after (t2) the intervention and two weeks post-intervention (t3). Data from 54 participants, recruited in a university setting and via Instagram, were analysed. For 10 min between t1 and t2, the intervention group (n = 26) and the control group (n = 28) scrolled through two different Instagram accounts. Psoriasis-sensitizing content was displayed to the intervention group while beauty-glorifying posts were shown to the control group. Results indicated significantly less Disease-related Misconceptions in the intervention group in comparison to the control group at t2 (U = 145.50, Z = -3.79, p < 0.001) and at t3 (U = 177.00, Z = -3.25, p = 0.003). Moreover, the intervention group showed a significant reduction over time in Stereotype Endorsement (F(2, 50) = 13.40, p < 0.001, partial η² = 0.35) and Disease-related Misconceptions (χ2(2) = 12.64, p = 0.002). These findings suggest that addressing psoriasis on Instagram has the potential to effectively reduce the related stigmatization. Further studies are necessary to assess the impact of social media on stigmatization concerning psoriasis in more depth.
Assuntos
Psoríase , Mídias Sociais , Estigma Social , Humanos , Projetos Piloto , Psoríase/diagnóstico , Psoríase/psicologia , Projetos de Pesquisa , Estereotipagem , Inquéritos e Questionários , Adolescente , Adulto Jovem , Adulto , Pessoa de Meia-Idade , FotografaçãoRESUMO
Positive health approaches, such as happiness, are largely unexplored in medicine, including dermatology. Taking into consideration the various happiness measures, the aims of this cross-sectional study were to assess this concept using a 1-item heuristic happiness question and its related dimensions (Satisfaction with Life, Positive and Negative Affect, Quality of Life, and Compound Psychological Capital) in outpatients with different skin diseases between December 2019 and June 2020, and to examine the link between these dimensions. Overall, 414 dermatological patients were included: 67 with psoriasis, 84 atopic eczema, 10 mastocytosis, 19 nummular eczema, 84 malignant melanoma and 150 keratinocyte carcinoma. Comparing the skin diseases, differences were observed for heuristic happiness, Positive Affect, and some domains of Quality of Life and Compound Psychological Capital. Analysing the relationship between heuristic happiness and other happiness measures, the data revealed moderate to strong correlations (r = 0.30-0.46, p< 0.001) and variations in the understanding of happiness between the skin diseases. Overall, the most important facet of happiness was Hope as a domain of Compound Psychological Capital. This study emphasizes the individual definition of heuristic happiness in patients with skin diseases. A 1-item heuristic approach may be a simple and practical method to assess the complexity and individuality of happiness.
Assuntos
Felicidade , Psoríase , Humanos , Estudos Transversais , Qualidade de Vida/psicologia , Heurística , Psoríase/psicologia , Satisfação PessoalRESUMO
BACKGROUND: Digital media are easily accessible without time restrictions and are widely used for health- or disease-related purposes. However, their influence on the patient journey and the patient-physician relationship has not yet been sufficiently investigated. OBJECTIVE: This qualitative interview study was designed to explore dermatologists' and patients' experiences with digital media for medical purposes in the context of patient journeys and patient-physician relationships. METHODS: Twenty-eight semistructured video conference-based interviews were conducted and audiorecorded by experienced interviewers between November 2021 and June 2022 in Germany. Eligible patients were those who were aged ≥18 years, were affected by at least one physician-confirmed skin disease, and were fluent in the German language. The eligibility criterion for dermatologists was that they were currently practicing dermatology in an outpatient setting or in a hospital. Randomly selected dermatologists from the listing of the German National Association of Statutory Health Insurance Physicians and dermatologists from personal academic and professional networks were invited for participation via postal mail and asked to identify potential patient volunteers from their patient bases. All recorded data were pseudonymized, fully transcribed verbatim, and subsequently analyzed according to Mayring's qualitative content analysis by 2 researchers, allowing for both a qualitative interview text analysis and a quantitative assessment of category assignments. RESULTS: In total, 28 participants were interviewed: 16 adult patients and 12 dermatologists. Eight main categories emerged as key areas of interest: (1) the search for diagnosis and symptom triggers, (2) preconsultation digital media use, (3) in-depth information and exchange with other patients, (4) self-treatment, (5) patient-physician interaction, (6) roles of dermatologists and patients, (7) patient eHealth literacy, and (8) opportunities and risks. Categories 1 and 2 were only coded for patients; the other categories were coded for both patients and dermatologists. Patients reported searches for diagnosis or treatment options were most frequently (8/16) caused by a mismatch of symptoms and diagnosis or dissatisfaction with current therapies. Concerns regarding a potentially severe diagnosis prompted searches for initial or in-depth information before or after dermatological consultations. However, the large volume of information of varying quality often confused patients, leading dermatologists to assume the role of evaluating information from preinformed patients. Dermatologists generally encouraged the use of digital media, considered teledermatology advantageous, and viewed big data and artificial intelligence as being potentially beneficial, particularly when searching for rare diagnoses. A single, easily accessible, and free-of-charge platform with high quality information in lay language was recommended by the dermatologists and desired by patients. CONCLUSIONS: Digital media are widely accepted by both patients and dermatologists and can positively influence both the dermatological patient journey and patient-physician relationship. Digital media may therefore have great potential to improve specialized health care if patients and dermatologists embrace their new roles.
Assuntos
Médicos , Dermatopatias , Humanos , Adulto , Adolescente , Inteligência Artificial , Dermatologistas , Internet , Dermatopatias/diagnóstico , Dermatopatias/terapia , Pacientes AmbulatoriaisRESUMO
PURPOSE: Prior research on the psychological consequences of skin diseases has focused on assessing mental comorbidities. The aim of this study was to investigate subjective well-being in a large sample of individuals affected by psoriasis, a chronic inflammatory skin disease, and to explore the associations with depression and disease-related parameters such as disease severity. METHODS: A cross-sectional online survey was conducted from March to June 2019. The link to the questionnaire was shared on websites and Facebook pages of psoriasis patient organizations and campaigns. Participants filled in validated scales measuring subjective well-being-operationalized as positive affect (PA), negative affect (NA) and satisfaction with life (SWL); and depression. RESULTS: The data of 722 participants were analyzed. Exploratory factor analysis supported the differentiation of PA, NA, SWL, and depression as four different constructs. The respondents reported lower levels of PA than healthy individuals and judged themselves to be less happy and were less satisfied with their lives than the general population (except age group 65 + years). 40.3% of respondents were screened positive for depression. More severe psoriasis was associated with lower affective well-being and a higher risk for depression. CONCLUSION: The results of this study empirically supported the differentiation of subjective well-being and depression as different constructs in individuals with psoriasis, and underline the large mental burden of the disease which goes beyond a higher risk for depression. Measures of well-being should thus be incorporated in both research and clinical practice in patients with psoriasis in order to achieve a more comprehensive picture of the mental burden of this disease.
Assuntos
Psoríase , Dermatopatias , Idoso , Estudos Transversais , Depressão/psicologia , Alemanha/epidemiologia , Felicidade , Humanos , Psoríase/psicologia , Qualidade de Vida/psicologia , Inquéritos e QuestionáriosRESUMO
AIM: Teledermatology has a great potential to improve dermatologic care in rural regions. The aim of this study was to assess the willingness to use teledermatology in the rural population of Bavaria, Southern Germany, and to explore major concerns regarding teledermatology. METHODS: The data of this cross-sectional study were collected both as part of a health survey conducted in the Bavarian forest region in Q1/2017 and as part of a follow-up survey (Q1/2018) of a running cohort study recruited at a Bavarian agricultural festival. Study participants were asked in a standardized questionnaire whether they would send pictures of skin rashes or other skin changes to their dermatologist via the internet, and if "no", why not. RESULTS: Data on 1,116 participants living in Bavaria were analysed (mean age 50.2 years, 57.3% female, 80.4% living in rural regions). Of the whole sample, 36.6% were willing to use teledermatology. Women, older participants and participants living in rural regions were less open to the use of teledermatology. Major concerns regarding teledermatology were impersonality, doubts about the quality of the service and data safety and privacy concerns. DISCUSSION: The willingness to use teledermatology in the rural population of Bavaria is still rather low. Before teledermatology can realise its full potential for improving health care in rural regions, the population needs to be educated about the functioning and the advantages of teledermatology, and data safety concerns need to be addressed.
Assuntos
Dermatologia , População Rural , Telemedicina , População Urbana , Estudos de Coortes , Estudos Transversais , Feminino , Alemanha , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e QuestionáriosRESUMO
AIM OF THE STUDY: During pandemics, the whole population is simultaneously confronted with the same health threat, resulting in enormous public interest. The current COVID-19 pandemic has left the world in a unique state of crisis. The aim of this analysis was to explore whether Google searches can be used to retrospectively retrace the COVID-19 pandemic in Germany and to detect local outbreaks by reflecting public interest in the virus. METHODS: Google Trends was used to explore the relative search volume (RSV) related to "coronavirus" from January 2020 to July 2020 in Germany. The RSV ranging between 0-100 was compared to new SARS-CoV-2 infections per day on a national level and to the cumulative infection numbers on a state level, as well as to important infectiological and political events. RESULTS: The most striking search peaks occurred after the first reported SARS-CoV-2 infection in Germany (January 27), during a major local outbreak in Heinsberg (February 25), after school closings (March 13) and the largest peak after nationwide contact restrictions (March 22) were announced. On a state level, peaks in RSV were observed after the first reported infection in each respective state. In addition, a higher RSV was recorded in states with higher numbers of infections (r=0,6, p=0,014) such as in Bavaria (RSV=96, 391 infections/100,000 inhabitants) and Baden-Württemberg (RSV=98, 340 infections/100,000 inhabitants). The lowest RSV (n=83) and lowest number of infections (50 infections/100,000 inhabitants) was observed in Mecklenburg-Western Pomerania. Since the end of May, SARS-CoV-2 related RSV remained at low level even when numbers of infections were temporarily rising due to local outbreaks such as the outbreak in Gütersloh, North Rhine-Westphalia. CONCLUSION: RSV related to "coronavirus" precisely reflected public interest during the beginning of the COVID-19 pandemic. As public interest has strongly declined, information distribution regarding the newest developments over the entire course of the pandemic will be a major public health challenge. ZIEL DER STUDIE: Während Pandemien ist die gesamte Gesellschaft zur gleichen Zeit mit derselben Erkrankung konfrontiert, was zu großem öffentlichen Interesse führt. Die aktuelle COVID-19 Pandemie hat die ganze Welt in einen einmaligen Ausnahmezustand versetzt. Ziel dieser Studie war es zu untersuchen ob das Pandemiegeschehen in Deutschland anhand von Google Suchanfragen retrospektiv rekonstruiert werden kann und ob lokale Ausbrüche mithilfe von Google Daten detektiert werden können. METHODIK: Das relative Google Suchvolumen (RSV) zum Thema "Coronavirus" wurde für den Zeitraum von Januar bis Juli 2020 mit Google Trends analysiert. Das RSV, das zwischen 0 und 100 betragen kann, wurde auf Bundesebene mit den täglich neu gemeldeten SARS-CoV-2 Infektionszahlen und auf Länderebene mit den kumulativen Infektionszahlen pro Bundesland sowie wichtigen infektiologischen und politischen Ereignissen verglichen. ERGEBNISSE: Höchstwerte im Google Suchvolumen nach der ersten gemeldeten SARS-CoV-2-Infektion in Deutschland (27. Januar), während des lokalen Ausbruchs in Heinsberg (25. Februar), nach den Schulschließungen (13. März) sowie, der absolute Höchstwert, nach Verkündung der bundesweiten Kontaktbeschränkungen (22. März) verzeichnet worden. Auf Bundesländerebene wurde immer dann ein Anstieg im Suchvolumen beobachtet, wenn die erste SARS-CoV-2 Infektion im jeweiligen Bundesland gemeldet wurde. Zudem wurde ein höheres RSV in Bundesländern mit mehr gemeldeten SARS-CoV-2-Infektionen registriert (r=0,6, p=0,014), wie z. B. in Bayern (RSV=96, 391 Infektionen/100 000 Einwohner) und Baden-Württemberg (RSV=98, 340 Infektionen/100 000 Einwohner). Das niedrigste RSV (n=83) und die niedrigste Anzahl an Infektionen (50 Infektionen/100 000 Einwohner) wurde in Mecklenburg-Vorpommern beobachtet. Seit Ende Mai ist das RSV bezüglich SARS-CoV-2 konstant gering, obwohl die Zahl an Neuinfektionen zwischenzeitlich aufgrund lokaler Ausbrüche gestiegen war wie z. B. der lokale Ausbruch in Gütersloh, Nordrhein-Westfalen. SCHLUßFOLGERUNG: Das RSV zum Thema "Coronavirus" bildeten das öffentliche Interesse während der ersten Monate der COVID-19 Pandemie präzise ab. Da das öffentliche Interesse jedoch stark nachgelassen hat, könnte es eine zentrale Herausforderung im weiteren Verlauf der Pandemie darstellen, die Bevölkerung weiterhin über neueste Entwicklungen und Maßnahmen informiert zu halten.
Assuntos
COVID-19 , Pandemias , Alemanha/epidemiologia , Humanos , Estudos Retrospectivos , SARS-CoV-2RESUMO
Patients with genital psoriasis show poorer outcomes regarding quality of life and sexual distress than those without. This study aimed to assess the occurrence of genital psoriasis and to determine factors associated with the avoidance of sexual activities due to psoriasis in a non-clinical setting. A cross-sectional, person-centered, and online-based nationwide survey was conducted in Germany between March and June 2019. A multiple logistic regression model was used to analyze the data. Furthermore, free-text answers were provided. Overall, 344 individuals with psoriasis participated. Of these, 198 (57.6%) reported having genital psoriasis and 261 (75.9%) currently received medical care. Duration of psoriasis, subjective overall severity, and pain during sex were associated with the avoidance of sexual activities. Most prevalent reasons to avoid sexual activities were 'shame,' 'pain,' and 'fear of rejection.' Sexual distress was high in this sample and a person-centered care approach needs to be further promoted.
Assuntos
Doenças dos Genitais Femininos/psicologia , Doenças dos Genitais Masculinos/psicologia , Psoríase/psicologia , Comportamento Sexual , Saúde Sexual , Adulto , Estudos Transversais , Dispareunia/epidemiologia , Dispareunia/psicologia , Medo , Feminino , Doenças dos Genitais Femininos/diagnóstico , Doenças dos Genitais Femininos/epidemiologia , Doenças dos Genitais Masculinos/diagnóstico , Doenças dos Genitais Masculinos/epidemiologia , Alemanha/epidemiologia , Inquéritos Epidemiológicos , Humanos , Masculino , Pessoa de Meia-Idade , Prevalência , Psoríase/diagnóstico , Psoríase/epidemiologia , Qualidade de Vida , Rejeição em Psicologia , Fatores de Risco , VergonhaRESUMO
BACKGROUND: Skin cancer is the most common malignancy of the fair-skinned population worldwide. To reduce skin cancer's burden primary and secondary prevention are critical. However, various studies indicate an inadequate prevention behavior among rural populations. OBJECTIVE: To examine the risk and prevention behavior with respect to skin cancer and to identify subgroups in rural areas with specific need for prevention efforts. MATERIALS AND METHODS: In a cross-sectional study carried out in the first quarter of 2017, patients and their accompanying persons (≥18 years) were interviewed on the subject of primary and secondary prevention in waiting rooms of nondermatological medical practices in the Bavarian Forest, Germany. Data were collected using paper-based questionnaires. Associations were calculated using logistic regression models. RESULTS: In all, 880 persons (57.7% women, mean ageâ¯= 49.5 years) were included in the analysis, of whom 53.6% had undergone a skin cancer screening at least once before. Sunscreen was the most frequently used sun protection measure. Male sex and being 18-34 years of age were significantly associated with not using prevention measures (depending on the measure: odds ratio [OR]: 1.4-2.4 and 1.8-3.7, respectively). In addition, not using skin cancer screening was associated with UV exposure more than 6â¯h daily in summer (OR: 1.8, 95%-CI [confidence interval]: 1.14-2.97). CONCLUSION: Future prevention strategies should increasingly focus on young adults, on men and people with high solar UV exposition particularly, to reduce the burden of skin cancer in rural areas.
Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Prevenção Secundária , Neoplasias Cutâneas/prevenção & controle , Protetores Solares/administração & dosagem , Raios Ultravioleta/efeitos adversos , Adolescente , Adulto , Estudos Transversais , Feminino , Florestas , Alemanha , Humanos , Masculino , Pessoa de Meia-Idade , Assunção de Riscos , Inquéritos e Questionários , Adulto JovemRESUMO
BACKGROUND: The disease burden of actinic keratoses and keratinocyte carcinoma can be reduced by primary and secondary prevention. However, these measures are often poorly received, especially among the high-risk group of outdoor workers. OBJECTIVES: The aim of this follow-up study was to investigate whether an improvement in sun protection and awareness of skin changes could be observed among the study population, especially outdoor workers, one year after a prevention campaign focusing on this topic. MATERIALS AND METHODS: In 2017, all participants who initially participated in a study at the Bavarian Central Agricultural Festival 2016 and agreed to participate in the follow-up study were contacted by mail and received the same questionnaire and evaluation questions regarding possible behavioral changes. RESULTS: A total of 400 people took part in the follow-up study (response rate 52.8%). Of the 240 outdoor workers, 45.0% said they were more conscious of protecting themselves from the sun and 68.8% said they were more aware of skin changes. About 85.0% of outdoor workers indicated that they would consult a dermatologist earlier and 65.8% desired further prevention campaigns regarding skin cancer and sun protection. CONCLUSION: Overall, the majority of participants reported that they had improved sun protection behavior and awareness of skin changes after the intervention. Based on the participants' self-disclosure, especially outdoor workers tended to use sun protection measure more frequently. These findings underline the importance of target group-oriented awareness and prevention campaigns to reduce the burden of skin cancer.
Assuntos
Carcinoma de Células Escamosas/prevenção & controle , Conhecimentos, Atitudes e Prática em Saúde , Queratinócitos , Ceratose Actínica/prevenção & controle , Roupa de Proteção , Neoplasias Cutâneas/prevenção & controle , Humanos , Inquéritos e QuestionáriosRESUMO
HINTERGRUND UND ZIELE: Das Internet ist eine gängige Informationsquelle bezüglich gesundheitlicher Themen. Soziale Medien ermöglichen es Patienten mit Psoriasis, Informationen über ihre Erkrankung zu suchen und auszutauschen. Ihre Nutzung geht jedoch auch mit Risiken wie Fehlinformation und Neid einher. Ziel dieser Studie war es, die Relevanz und Eignung von Facebook als Quelle krankheitsbezogener Informationen für Patienten mit Psoriasis zu untersuchen. MATERIAL UND METHODIK: Querschnittsstudie in Form einer Online-Befragung (11/2017-01/2018). Der Link wurde auf einer deutschen Psoriasis-Informationswebsite veröffentlicht. Daten über die allgemeine und krankheitsbezogene Facebook-Nutzung der Teilnehmer sowie deren Einschätzung der Chancen und Risiken von Facebook in Bezug auf Psoriasis wurden erhoben. ERGEBNISSE: 101 Teilnehmer mit Psoriasis haben den Fragebogen vollständig ausgefüllt. 75 % von ihnen berichteten, Facebook mindestens einmal pro Monat zu nutzen, und 72 % der Facebook-Nutzer gaben an, auf Facebook nach krankheitsbezogenen Informationen zu suchen. Aktive Mitglieder von Facebook-Gruppen mit Bezug zu Psoriasis bewerteten Facebook als nützlicher im Umgang mit der Erkrankung als andere Nutzer. 60 % der Facebook-Nutzer berichteten auf Facebook fragwürdigen Informationen über Psoriasis und 57 % Werbung mit Bezügen zu Psoriasis ausgesetzt zu sein. SCHLUSSFOLGERUNGEN: Laut den Ergebnissen dieser Studie ist Facebook eine relevante Informationsquelle für Patienten mit Psoriasis. Die Qualität der Informationen erscheint jedoch unzureichend und sollte deshalb verbessert werden.
RESUMO
BACKGROUND AND OBJECTIVES: The Internet is a commonly used source of health-related information. Social media allow psoriasis patients to seek and share information about their disease. However, they also involve risks such as misinformation and envy. The aim of this study was to explore the relevance and suitability of Facebook as a source of disease-related information for patients with psoriasis. PATIENTS AND METHODS: Cross-sectional study consisting of an online survey (11/2017-01/2018). The link was published on a German information website focused on psoriasis. We also collected data about the respondents' general and disease-related Facebook habits as well as their assessment of opportunities and risks of Facebook in the context of psoriasis. RESULTS: 101 participants with psoriasis completed the questionnaire. Of these, 75 % reported using Facebook at least once a month, and 72 % of Facebook users stated that they had searched for disease-related information on Facebook. Active members of psoriasis-related Facebook groups deemed Facebook more helpful for coping with psoriasis. 60 % of Facebook users reported unreliable information and 57 % reported sales promotions regarding psoriasis when using Facebook. CONCLUSIONS: We found that Facebook is a relevant source of information for psoriasis patients. However, the quality of information offered seems insufficient and needs to be improved.
Assuntos
Comportamento de Busca de Informação , Psoríase , Mídias Sociais/estatística & dados numéricos , Adulto , Idoso , Estudos Transversais , Feminino , Alemanha , Humanos , Internet , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Adulto JovemRESUMO
Hair loss is a symptom that can cause stigmatization and severe impairment of quality of life. The aim of this systematic review was to evaluate the literature on stigmatization of hair loss. Using predefined MeSH terms and keywords, a systematic search was performed in the databases MEDLINE (PubMed), EMBASE, PsycINFO and PsycNET. No time restriction was chosen (last update: May 07, 2019; PROSPERO registration number: CRD42019122966). A total of 98 studies were identified, of which eleven were selected for inclusion in this work. The Hairdex, a questionnaire on disease-specific quality of life, was the most frequently used instrument for the quantitative assessment of stigma. The studies were highly heterogeneous and values for stigmatization of androgenetic alopecia varied widely. However, regardless of the pathogenesis, patients with hair loss often suffer from stigmatization which limits their quality of life. Stigmatization of people with visible skin lesions has often been neglected in clinical practice and in daily contact with affected individuals. Studies that specifically address the stigma of hair loss are rare. Further studies are needed to achieve comparability within pathogeneses as well as with other visible dermatoses in order to better understand the enormous psychosocial burden of hair loss.
Assuntos
Qualidade de Vida , Estereotipagem , Alopecia , Humanos , Estigma Social , Inquéritos e QuestionáriosRESUMO
Web search data are associated with disease incidence, population interest, and seasonal variations. This study aimed to investigate seasonal and geographical variations of web search data for sarcoidosis and to explore its association with external factors and sarcoidosis incidence in Sweden. Therefore, sarcoidosis-related data from Google Ads Keyword Planer (2017-2020) were generated for Sweden according to its 21 counties. The relationship between search volume and season, region, population demographics, environmental factors, and the sarcoidosis incidence listed in the National Patient Register was assessed. Analyses revealed seasonal variations for Sweden with an overall peak in the spring and autumn. Geographical differences were observed, with a higher search volume for north-western counties and the lowest search volume for Stockholm County. At the country level, the search volume was positively associated with the sarcoidosis incidence. Higher male proportion and older mean age were associated with a higher search volume, while a higher proportion of foreign-born residents, humidity, and mean temperature were associated with a lower search volume. Our analyses detected correlations between web search data, sarcoidosis incidence, and external factors. Analyses of sarcoidosis web search data therefore appear to be a valuable approach to disease surveillance to address medical needs and public interest.
Assuntos
Sarcoidose , Estações do Ano , Humanos , Suécia/epidemiologia , Sarcoidose/epidemiologia , Masculino , Feminino , Estudos Retrospectivos , Incidência , Estudos Longitudinais , Internet , Ferramenta de Busca , Pessoa de Meia-Idade , Adulto , IdosoRESUMO
This exploratory qualitative study aims to gain a people-centered understanding of the patient journey in axial spondyloarthritis (axSpA). Semi-structured interviews were conducted with 15 individuals diagnosed with axSpA, aged 18 years and older, who were purposively recruited from a rheumatologic practice in southern Germany. The interviews were carried out as web-based video calls between September and October 2021, audio-recorded, transcribed verbatim, and analyzed according to Kuckartz's qualitative content analysis. Patient journey narratives encompassed both healthcare journeys and personal journeys. Healthcare journeys were characterized as fragmented and difficult to navigate, with diagnosis often marking a turning point toward more coordinated care. Post-diagnosis, new challenges emerged (e.g., time management for treatment). Personal journeys comprised perceptions of axSpA in social contexts (e.g., stigmatization) and the continuous interplay of comorbidities and biographical events with healthcare related to axSpA. This study proposes a people-centered perspective on the patient journey in axSpA, emphasizing the interplay of biographies, comorbidities, and social context with healthcare events. Recognizing these personal factors in clinical practice is encouraged to address complex health needs and tailor treatment to each individual. Further efforts should promote collaboration between medical disciplines and integrate healthcare and social support at all stages of the axSpA patient journey.