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1.
Article in English | MEDLINE | ID: mdl-39247975

ABSTRACT

BACKGROUND: People with skin disease suffer due to disease-related physical symptoms, as well as due to significant psychosocial burden. A major contributor of this burden is the experience of stigmatization. Research indicates that people with visible skin diseases deal with both social stigma and self-stigma. OBJECTIVE: This systematic literature review aimed to aggregate existing research on correlates and mechanisms that contribute to self-stigmatization among people with atopic dermatitis, psoriasis, vitiligo, alopecia areata or hidradenitis suppurativa and to, ultimately, identify targets for psychosocial interventions. METHODS: The review followed PRISMA guidelines. Four databases, PubMed, OVID, Web of Science and PsycINFO were searched for peer-reviewed articles. Studies were identified by two independent researchers and were eligible if they (1) assessed adults with one of five chronic skin diseases-atopic dermatitis, psoriasis, vitiligo, alopecia areata or hidradenitis suppurativa, (2) measured self-stigma or relevant synonyms, (3) evaluated psychosocial correlates, predictors or explanatory mechanisms of self-stigma and (4) were published in German or English in a peer-reviewed journal. The Johanna Briggs Institute Checklist for Analytical Cross Sectional Studies was used to evaluate the quality of studies. RESULTS: Twenty-seven studies were included with a mean quality rating of 7.04 (out of 8). Social stigma, coping strategies (such as lack of acceptance) and lack of social support were identified as main predictors of self-stigma. Although study quality was good, all but one study had a cross-sectional design that does not allow examining causal relationships among the determinants of self-stigma. CONCLUSIONS: Findings from the present review revealed several psychosocial variables that are malleable and potentially suitable as intervention targets. Those variables such as acceptance should be targeted in evidence-based interventions specifically developed to reduce self-stigma to, ultimately, improve mental health of people affected.

2.
Acta Derm Venereol ; 104: adv40384, 2024 Sep 10.
Article in English | MEDLINE | ID: mdl-39254291

ABSTRACT

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.


Subject(s)
Quality of Life , Self Concept , Skin Diseases , Social Stigma , Humans , Skin Diseases/psychology , Skin Diseases/therapy , Health Knowledge, Attitudes, Practice , Chronic Disease
3.
Int J Womens Dermatol ; 10(3): e176, 2024 Oct.
Article in English | MEDLINE | ID: mdl-39263467

ABSTRACT

Background: Women of childbearing age (WoCBA) with psoriasis face additional burden related to contraindications of systemic treatments during pregnancy/lactation and to the physical and psychosocial impact of psoriasis on their intimate/sexual relationships. Objective: Within a people-centered health care model, this study aimed to identify specific patient needs and their correlates in WoCBA (18-45 years), in comparison to same-age men and women above 45 years. Methods: Baseline data from the German PsoBest registry, including patients with moderate/severe plaque-type psoriasis with the indication for systemic therapy, were retrospectively analyzed. Psoriasis severity was assessed with the Psoriasis Area and Severity Index and patient-reported outcomes included EuroQoL Visual Analogue Scale, Dermatology Life Quality Index (DLQI), and Patient Needs Questionnaire. Results: The participants were 2308 WoCBA, 3634 men between 18 and 45 years of age, and 3401 women older than 45 years. In comparison to both control groups, WoCBA reported more DLQI impairments and higher needs to reduce social impairments (eg, "to be able to lead a normal working life"; "to be less burdened in your partnership"; "to be able to have a normal sex life"). These patient needs were associated with having psoriasis arthritis, previous systemic therapy, worse general health, and more DLQI impairments. Limitations: Retrospective analysis of an established dataset limited the examination of specific developmental, sexual, and reproductive variables. Conclusion: The specific needs of WoCBA with psoriasis were particularly related to the work context/financial stability and intimate relationships, which are crucial aspects in family planning. These results claim for a sex/age-sensitive approach in the psoriasis health care, by considering these needs as qualifiers in the clinical decision for systemic treatment.

4.
BMC Med Educ ; 24(1): 848, 2024 Aug 07.
Article in English | MEDLINE | ID: mdl-39112981

ABSTRACT

BACKGROUND: Skin diseases in patients with skin of colour (Fitzpatrick skin types IV to VI) are underrepresented in dermatology training, which may lead to lower quality of care for these patients. To address this underrepresentation in medical education, a newly developed seminar on skin type diversity using an interactive teaching method was implemented in an undergraduate medical curriculum. This study examined the effects of a seminar on the self-assessed competence of medical students in managing skin conditions in patients with skin of colour. METHODS: A questionnaire survey was conducted among fourth-year undergraduate medical students at the University of Hamburg (Germany) between October 2023 and February 2024. Students' self-assessed competence was compared before and after the obligatory seminar (pre- and post-design). RESULTS: In total, 158 students participated in the survey. After the seminar, knowledge of the presentation of skin diseases in patients with skin of colour and the associated psychological burden, differences in the incidence of skin diseases in different skin types, and the ability to diagnose skin diseases in darker skin types increased. Most participants stated that they wanted to attend more courses on this topic. DISCUSSION: Appropriate courses for medical students can improve their competence in managing different skin diseases in patients with skin of colour. In the future, more attention should be paid to teaching the diversity of skin types in dermatology education.


Subject(s)
Clinical Competence , Curriculum , Education, Medical, Undergraduate , Self-Assessment , Skin Diseases , Skin Pigmentation , Students, Medical , Humans , Skin Diseases/therapy , Skin Diseases/diagnosis , Male , Female , Dermatology/education , Surveys and Questionnaires , Germany , Adult , Young Adult
5.
J Dtsch Dermatol Ges ; 2024 Aug 21.
Article in English | MEDLINE | ID: mdl-39167551

ABSTRACT

Vitiligo is a common disorder characterized by the visible loss of skin pigmentation. Non-segmental vitiligo (NSV) is the major subtype. The disease is caused by autoimmune-mediated destruction of melanocytes. Vitiligo leads to stigmatization and a significant reduction in quality of life. Disregarding the psychosocial burden, vitiligo is sometimes viewed solely as a cosmetic problem and, according to a global survey, is diagnosed on average only after 2.4 years. This delay contributes to a considerable burden of disease, including suicidal ideation. Stigmatization promotes the development of psychological comorbidities such as anxiety and depressive disorders, with prevalence rates varying by country and study (0.1%-67.9%). Data for Germany are heterogeneous and largely based on estimates. Due to psychosocial factors, the inflammatory component, and a higher incidence of somatic comorbidities, NSV may be regarded as an inflammatory systemic disease. We recommend optimizing care by incorporating the assessment of quality of life as a standard in routine care, in addition to monitoring disease activity. Moreover, early screening for psychological comorbidities is crucial to initiate appropriate treatment before the condition becomes chronic and cumulative (irreversible) impairments occur. The goal is a personalized and patient-centered integrated care approach that sustainably improves the health status of those affected.

6.
J Eur Acad Dermatol Venereol ; 38(2): 302-310, 2024 Feb.
Article in English | MEDLINE | ID: mdl-37822008

ABSTRACT

Psoriasis causes detriment in a person's physical, mental and social health which impairs their quality of life (QoL). However, the current psoriasis management may not adequately address all relevant health domains. Since the goal of healthcare is to restore or maintain health, health outcomes should include all areas of the patient's overall health. Life satisfaction, QoL and patient well-being are essential to a comprehensive approach to the disease. With the inclusion of more people-centred policies, care of patients with psoriasis should evolve towards a holistic and integrated assessment of the disease impact, including subjective measures of well-being in order to encompass all aspects of health. The main objective of this expert review is to give the concept of well-being a place as an entity within the holistic therapeutic approach for patients with psoriasis. Identifying and defining common goals beyond the skin with the patient and testing them throughout the course of treatment will benefit and enhance treatment success. We propose a series of recommendations for application in clinical practice, providing tangible clinical guidance for implementing well-being in the management of psoriasis. Among the recommendations are the need to initially listen to the patient, to know their level of empowerment or what they want to achieve, their preferences in decision making, the evaluation of not only the physical but also the emotional impact of the disease (well-being), the definition of the aspects that can generate a cumulative deterioration of the disease throughout life, and a continuous assessment of the patient's preferences with the opinion of the expert clinician and the integration of the knowledge of external clinical evidence.


Subject(s)
Psoriasis , Quality of Life , Humans , Delivery of Health Care , Psoriasis/therapy , Psoriasis/psychology , Skin
7.
Patient Prefer Adherence ; 17: 1335-1345, 2023.
Article in English | MEDLINE | ID: mdl-37284248

ABSTRACT

Introduction: Evaluation of patient-reported outcomes including health-related quality of life (HRQoL) and perceived benefits from treatment has become a fundamental component of medical decision-making. Standardized evaluation of treatment benefits in rosacea based on patient preferences is still lacking. Objective: Development and validation of an instrument for recording patient-defined benefits in rosacea therapy based on the Patient Benefit Index (PBI) methodology. Patients and Methods: In an open survey of n = 50 patients, potential benefits of therapy from the patient's perspective were examined. The generated item pool was combined with pre-existing PBI items for other skin conditions and reviewed by an expert panel of dermatologists, psychologists and patients. Items were condensed to n = 25 and converted into a Likert-scaled questionnaire. The validity and feasibility of the resulting Patient Benefit Index for rosacea (PBI-RO) were tested on individuals with rosacea recruited from a German rosacea patient organization. Results: N = 446 patients with rosacea completed the PBI-RO. The internal consistencies measured by Cronbach's alpha were high (Patient Needs Questionnaire [PNQ] 0.94). Mean PBI-RO was 1.9 ± 1.2 (scale from 0 = no benefit to 4 = maximum benefit), 23.5% of the patients experienced a PBI-RO < 1 (no clinically relevant benefit). The PBI-RO correlated with HRQoL, health state, current extent of rosacea lesions and treatment satisfaction. The highest correlation was found between PBI-RO and satisfaction with previous treatment (r = -0.59, p < 0.001); correlation with the extent of rosacea lesions was low (r = 0.16, p < 0.001). Conclusion: The PBI-RO shows satisfying internal consistency and construct validity. It offers the option of a patient-weighted evaluation of the therapeutic benefit of rosacea therapy and may add to more stringent goal orientation in therapy.

8.
Acta Derm Venereol ; 103: adv3962, 2023 Apr 04.
Article in English | MEDLINE | ID: mdl-37014270

ABSTRACT

The impact of dermatological diseases goes beyond symptoms and often includes psychosocial burden. Self-stigmatization plays a key role in this relationship and was compared in patients with psoriasis and atopic dermatitis to evaluate the validity of cross-disease stigmatization models. In total, 101 patients per indication were included in this cross-sectional study. Besides sociodemographic and clinical data, patient-reported outcome measures relating to self-stigmatization, depression, anxiety, and quality of life were compared across groups. Sociodemographic and clinical factors were tested for their moderating effects between self-stigmatization and quality of life. Group mean comparisons yielded no significant differences in self-stigmatization between patient groups. In both diseases, self-stigmatization significantly predicted depression and anxiety symptoms as well as quality of life. Current symptoms, not having close social relationships, and lower age predicted self-stigma in patients with psoriasis, whereas the involvement of sensitive body areas, the sum of previous treatments, and female sex were predictors in patients with atopic dermatitis. In both groups, symptoms had significantly moderating effects. The results underline the relevance of self-stigmatization in patients with chronic skin diseases. Awareness should be raised, screening implemented, and psychosocial support offered early on. Assessments, conceptual models of self-stigma, and interventions are probably applicable for both diseases.


Subject(s)
Dermatitis, Atopic , Psoriasis , Humans , Female , Dermatitis, Atopic/diagnosis , Dermatitis, Atopic/psychology , Quality of Life/psychology , Cross-Sectional Studies , Psoriasis/diagnosis , Psoriasis/psychology , Social Stigma
9.
Article in English | MEDLINE | ID: mdl-36807404

ABSTRACT

INTRODUCTION: Patients with chronic skin diseases suffer from physical, psychological, emotional and social impairments. The overall burden has significant impact on patients' life, contributing to irreversible damage across many domains, known as cumulative life course impairment (CLCI). The aim of this project was to develop instruments which (a) measure persisting CLCI and (b) identify patients at risk for developing future CLCI. METHODS: We identified key topics that negatively impact life course due to skin disease patient-reported open item selection. Subsequently, we conducted focus group interviews with patients and experts to conceptualize items and response scales, resulting in two preliminary measurement tools. These tools were tested in a cognitive debriefing before finalization. RESULTS: Consecutively, 162 patients participated in the open item selection and indicated the following topics were most relevant to their disease: disease symptoms, risk behaviour, comorbidities, psychological and emotional impairments, physical impairments, occupational impairments, treatment, sexuality, problems with family or friends, everyday life and positive event or decisions because of the disease. In the focus group interviews, patients reported stigmatization, support at disease onset, pre-existing diseases and age of onset as additional important topics. The cognitive debriefing resulted in minor changes to sentence structure. The final tools included: (1) DermCLCI-r, which assesses retrospective CLCI, and (2) DermCLCI-p, which assesses current CLCI and future risk. Each tool consisted of 30 items. DISCUSSION: The newly developed measures allow for early identification of CLCI, facilitate adequate dermatological and psychosocial interventions and may contribute to the prevention of CLCI. Further validation studies will be performed.

10.
BMJ Open ; 13(2): e060536, 2023 02 15.
Article in English | MEDLINE | ID: mdl-36792337

ABSTRACT

INTRODUCTION: Psoriasis is a chronic inflammatory skin disease that negatively impacts the quality of life of patients and their families. However, the most commonly used decision-making tools in psoriasis, Psoriasis Area and Severity Index (PASI), Physician Global Assessment (PGA) and Dermatology Life Quality Index (DLQI), do not fully capture the impact of psoriasis on patients' lives. In contrast, the well-established 5-item WHO Well-being Index (WHO-5) assesses the subjective psychological well-being of patients. Moreover, while drug innovations became available for psoriasis, data on the impact of these therapies on patients' lives and their closest environment (family, physicians) are limited. This study will assess the effect of tildrakizumab, an interleukin-23p19 inhibitor, on the overall well-being of patients with moderate-to-severe psoriasis. Moreover, the long-term benefit of tildrakizumab on physicians' satisfaction and partners' lives of patients with psoriasis will be evaluated. METHODS AND ANALYSIS: This non-interventional, prospective, observational, real-world evidence study will involve multiple sites in Europe and approximately 500 adults with moderate-to-severe psoriasis treated with tildrakizumab. Each patient will be followed for 24 months. The primary endpoint is well-being measured by the WHO-5 questionnaire. Key secondary endpoints include Physician's Satisfaction and partner's quality of life (FamilyPso). Other endpoints will evaluate skin-generic quality of life (DLQI-R), Treatment Satisfaction Questionnaire for Medication (TSQM-9), Treatment-related Patient Benefit Index 'Standard', 10 items (PBI-S-10) and work productivity and activity impairment due to psoriasis (WPAI:PSO). Statistical analyses will be based on observed cases. Multiple imputations will be performed as a sensitivity analysis, and adverse events will be reported. ETHICS AND DISSEMINATION: The study will be conducted according to the protocol, which received ethics committee approval and applicable regulatory requirements of each participating country. The results will be disseminated through scientific publications and congress presentations. TRAIL REGISTRATION NUMBER: ClinicalTrials.gov Identifier: NCT04823247 (Pre-results).


Subject(s)
Psoriasis , Quality of Life , Adult , Humans , Chronic Disease , Observational Studies as Topic , Patient Reported Outcome Measures , Prospective Studies , Psoriasis/drug therapy , Severity of Illness Index , Treatment Outcome , Clinical Trials, Phase IV as Topic
11.
Skin Pharmacol Physiol ; 36(6): 296-301, 2023.
Article in English | MEDLINE | ID: mdl-38325354

ABSTRACT

INTRODUCTION: Atopic dermatitis (AD) is a physical, emotional, and social burden for patients. Most suffer from itching, pain, and dry skin as well as sleep disturbances, experienced stigmatization, anxiety, or depression. Therefore, it is important to consider the psychosocial well-being and also stigmatization in the treatment of people with AD. The aims of this study were to compare clinical and psychosocial parameters between patients with a different severity of AD and to analyse the effect of an omega-6-fatty-acid-skin therapy. METHODS: Adult patients with clinically confirmed AD were asked about quality of life, stigmatization, and well-being after dermatological diagnosis. A second examination took place after 2-5 weeks. Meanwhile, after randomization, half of the patients used an omega-6-fatty-acid-skin therapy. RESULTS: Seventy-nine patients were included in the study. The use of omega-6-fatty-acid-skin therapy resulted in a significant reduction in the severity of xerosis cutis compared to patients using another basic therapy. In addition, the health-related quality of life of all patients improved significantly in both groups (F = 7.56; p = 0.008), and no significant difference was found between the groups over time in the patient-reported outcomes. CONCLUSION: Basic therapy for AD leads to relevant improvements in clinical status as well as quality of life. Patients using omega-6-fatty-acid-skin therapy experience greater improvement in xerosis cutis compared to free-choice basic therapy.


Subject(s)
Dermatitis, Atopic , Skin Diseases , Adult , Humans , Delivery of Health Care , Dermatitis, Atopic/drug therapy , Pruritus , Quality of Life , Severity of Illness Index
12.
Antibiotics (Basel) ; 11(11)2022 Nov 11.
Article in English | MEDLINE | ID: mdl-36421246

ABSTRACT

(1) Background: Periprosthetic joint infection (PJI) can be managed with one- or two-stage revision surgery protocol. Despite several studies analyzing the eradication rates between both procedures, there are no comparative studies that analyze patient-reported outcome measures (PROMs) and quality-adjusted life years (QALYs) in both treatment strategies. (2) Methods: All patients who underwent a two-stage knee revision between January 2017 to December 2018, due to a periprosthetic joint infection were included in the study. From the time interval, we selected a comparative group with the one-stage septic procedure. All patients received the following questionnaires: Oxford Knee Score, EQ-5D-5L, SSQ-8, and the SF-36. Additionally, demographic patient data were collected. The quality-adjusted life years (QALY) were calculated using the EQ-5D-5L. (3) Results: A total of 35 patients with a mean age of 67.7 years (SD = 8.9) were included in the final evaluation. The mean follow-up period was 54.5 months (SD = 5.5). There was no statistically significant difference regarding the Charlson Comorbidity Index (CCI), postoperative complications, or all evaluated questionnaires. There was no statistically significant difference in QALYs between the one- and two-stage revision. (4) Conclusion: Our study results show that the one-stage revision for PJI achieves similar PROMs compared to two-stage revision.

13.
BMJ Open ; 12(9): e055477, 2022 09 23.
Article in English | MEDLINE | ID: mdl-36153012

ABSTRACT

OBJECTIVES: While stress plays a paramount role on the onset/exacerbation of psoriasis, via overactivation of the hypothalamic-pituitary-adrenal axis and increased release of pro-inflammatory cytokines, cutaneous inflammatory response induces, in turn, anxiety/depression symptoms, via body disfigurement and stigmatisation. The intensity of pruritus and anogenital involvement are additional risk factors for psychological comorbidity.Aims were to (1) examine the effects of intensity of pruritus and anogenital psoriasis on disease burden and psychological comorbidity and (2) identify the variables associated with the presence of clinically significant depression, anxiety, and dysmorphic concerns. DESIGN: Cross-sectional study. SETTING: Conducted at the University Medical Center Hamburg-Eppendorf (UKE). PARTICIPANTS: 107 patients with psoriasis (mean age = 46.3, SD = 14.6 years; 53.3% male): 64 with none/mild pruritus; 43 with moderate/severe pruritus; 31 with anogenital psoriasis; 76 not affected in the anogenital area. PRIMARY/SECONDARY OUTCOMES MEASURES: Disease severity was assessed with Psoriasis Area and Severity Index and intensity of pruritus was rated by patients. Patient-reported outcomes included the Dermatology Life Quality Index, ItchyQoL, Patient Benefit Index, Perceived Stigmatisation Questionnaire, and Relationship and Sexuality Scale. Psychological morbidity was assessed with the Patient Health Questionnaire, Generalised Anxiety Disorder, and Dysmorphic Concern Questionnaire. RESULTS: Patients with moderate/severe pruritus reported more quality of life impairments, depression, anxiety and dysmorphic concerns, and less treatment benefits than those with none/mild pruritus. Moderate/severe pruritus had a deleterious effect on depression and stigmatisation for patients without anogenital involvement. Less patient benefits were associated with a higher likelihood of clinically significant depression/anxiety. CONCLUSION: Pruritus induces significant burden and psychological morbidity, particularly for patients without anogenital involvement. However, coping strategies used by patients with anogenital psoriasis might be dysfunctional for overall psychosocial adaptation. Patient-centred healthcare might be the best way to prevent psychological comorbidity. ETHICS APPROVAL: Ethics Committee of the Medical Association of Hamburg (process number PV6083, 28 May 2019).


Subject(s)
Anxiety , Depression , Pruritus , Psoriasis , Adult , Anxiety/diagnosis , Anxiety/epidemiology , Comorbidity , Cross-Sectional Studies , Cytokines , Depression/diagnosis , Depression/epidemiology , Female , Humans , Hypothalamo-Hypophyseal System , Male , Middle Aged , Pituitary-Adrenal System , Pruritus/epidemiology , Pruritus/etiology , Pruritus/psychology , Psoriasis/complications , Psoriasis/epidemiology , Psoriasis/psychology , Quality of Life , Severity of Illness Index , Surveys and Questionnaires
14.
Qual Life Res ; 31(12): 3355-3363, 2022 Dec.
Article in English | MEDLINE | ID: mdl-35948788

ABSTRACT

PURPOSE: This qualitative study aimed to investigate the importance of subjective well-being (SWB) as an outcome of psoriasis treatment from patient's perspective. We focused on the affective component of SWB as assessed with the Daily Experience Sampling Questionnaire (DESQ), a validated daily diary. METHODS: Semi-structured qualitative telephone interviews were conducted with in-patients of a dermatological rehabilitation clinic, after participants had completed the DESQ for up to seven days to get familiar with the concept of SWB. Patients were asked to reflect on the importance of SWB as treatment goal and on its relative importance as compared with other treatment outcomes. We also addressed whether SWB could be an indirect measure of benefit in that it reflects other important outcomes. Transcripts were analyzed using content analysis. RESULTS: Eleven patients participated (24-63 years, mean 53 years, 8 male, 3 female). Participants uniformly confirmed that changes in SWB reflected treatment benefit. All but one considered SWB to be a central aspect of treatment benefit-either as the most important treatment goal or as an indirect benefit indicator. In particular, participants described positive associations of SWB with other outcomes, such as symptoms. They reported that both the disease and the medical treatment had an impact on their SWB, which was reflected in the DESQ. CONCLUSION: Our findings suggest that SWB is a relevant indicator of treatment benefit for patients with psoriasis. Therefore, SWB measures, such as the DESQ, could be used to operationalize patient-relevant benefit of psoriasis treatment, complementing outcome measures currently used.


Subject(s)
Psoriasis , Quality of Life , Humans , Male , Female , Quality of Life/psychology , Outcome Assessment, Health Care/methods , Qualitative Research , Treatment Outcome , Psoriasis/drug therapy
15.
Br J Dermatol ; 187(1): 82-88, 2022 07.
Article in English | MEDLINE | ID: mdl-35064926

ABSTRACT

BACKGROUND: The quality of dermatology consultations is partly determined by how clinicians approach patient care. The term 'Personal Models' describes the explanatory frameworks of thoughts, feelings and experiences that drive behaviour. One study found that clinicians' personal models, specifically their beliefs about autonomy and patient self-management, influenced the degree to which clinicians engage patients in shared decision making during consultations. Further research is needed to further explore how clinicians' personal models inform and affect the quality of patient care. OBJECTIVES: To explore how clinicians' personal models inform shared decision making and consultation style in managing people living with psoriasis in the context of a new treatment, Apremilast. METHODS: A framework analysis of qualitative semi-structured telephone interviews with 13 dermatologists from the UK and Germany who participated in a novel medicine trial for psoriasis called APPRECIATE. RESULTS: Two themes were derived from the data. Theme 1, 'personal working models of patient care', comprised two subthemes: 'patient-centredness: a continuum' and 'stereotypes and assumptions'. Theme 2, 'impact of personal working models on patient care', included three subthemes: 'shared decision making: a continuum', 'consultation skills' and 'impact of concerns about Apremilast on prescribing behaviour'. CONCLUSIONS: Although many dermatologists endorsed a patient-centred approach, not all reported working in this way. Clinicians' personal models, their beliefs, stereotypes, personal perceptions and assumptions about patients are likely to affect their prescribing behaviour and shared decision making. Additional specialized training and education could increase patient-centredness and whole-person management.


Subject(s)
Dermatologists , Psoriasis , Decision Making , Humans , Psoriasis/drug therapy , Qualitative Research , Referral and Consultation , Thalidomide/analogs & derivatives
16.
Skin Pharmacol Physiol ; 35(2): 87-93, 2022.
Article in English | MEDLINE | ID: mdl-34521094

ABSTRACT

INTRODUCTION: Pruritus has been shown to be a common and burdensome complaint in the general population. In some diseases, there is an even higher rate and intensity of pruritus such as in chronic kidney diseases. In particular, patients requiring dialysis commonly suffer from pruritus with proportions between 22.0 and 90.0%. Few data on the characteristics and burden of such pruritus have been published. Therefore, the aim of this study was to investigate the extent and profiles of pruritus in such patients related to skin lesions and care. METHODS: A non-interventional cross-sectional study in 14 centres for haemodialysis across Germany was conducted. The survey explored the prevalence, severity, and resulting burden of pruritus and skin lesions. RESULTS: In total, 302 patients with uraemia (56.5% male, mean age 66.0 ± 14.4 years, mean duration of dialysis 3.9 ± 4.8 years) were included. Skin lesions appeared since start of dialysis in 50.0% of patients, with xerosis (94.7%) and desquamation (25.8%) being the most frequent and disturbing findings. Pruritus was reported by 60.9% of patients undergoing dialysis with a current mean numerical rating scale of 5.1 ± 2.4 occurring most frequently in the back, legs, and arms. About 89.0% of patients with xerosis and 69.0% with desquamation reported self-medication. However, only 40.0% and 28.0% sought medical help, respectively, indicating a remarkable lack of healthcare. DISCUSSION: The current data suggest a more intensive focus on the skin symptoms and signs related to uraemia in the patients with dialysis and thus underline claims from a previous German large-scale study. Recommendations for early treatment and prevention of skin lesions in dialysis patients should be developed. Further research should be conducted focusing on recognizing subgroups of patients of particular vulnerability to pruritus and skin lesions, which may facilitate identifying patients at risk in an early moment. Moreover, a more specific tool for screening of skin lesions as well as pruritus may be useful since the existing instruments lack such specificity.


Subject(s)
Renal Dialysis , Uremia , Aged , Aged, 80 and over , Cross-Sectional Studies , Female , Humans , Male , Middle Aged , Pruritus/epidemiology , Pruritus/etiology , Renal Dialysis/adverse effects , Skin Care , Uremia/etiology , Uremia/therapy
17.
J Dermatolog Treat ; 33(5): 2482-2487, 2022 Aug.
Article in English | MEDLINE | ID: mdl-34547964

ABSTRACT

BACKGROUND: Xerosis cutis is recognized as a burdensome and stressful condition of the skin, resulting in impaired health-related quality of life (HRQoL). Therefore, it should be treated as a relevant skin disease with detailed care and treatment recommendations. METHODS: This cross-sectional, exploratory study aimed to examine xerosis cutis-related burden from patient's perspective and compare it with individuals without xerosis cutis. Within-group comparisons were also performed among patients with xerosis cutis associated with atopic dermatitis (AD) or not. The second aim was to assess the effect of a routinely applied basic skin care therapy in terms of burden release. RESULTS: Overall, 127 participants were included in the study. Patients with xerosis cutis reported a lower quality of life (p = .041), more dysmorphic concerns (p < .001), and higher general anxiety (p = .029) than individuals without xerosis cutis. The presence of AD was associated with lower HRQoL (p = .023), more depression (p = .008) and anxiety symptoms (p = .003), and more stigmatization experiences at baseline (p < .001). CONCLUSION: Patients with xerosis cutis showed higher psychosocial burden than participants without xerosis cutis. Additionally, patients with xerosis and AD had more psychosocial impairments than patients with xerosis without AD.


Subject(s)
Dermatitis, Atopic , Skin Diseases , Cross-Sectional Studies , Dermatitis, Atopic/complications , Humans , Pruritus , Quality of Life/psychology , Skin Care , Skin Diseases/diagnosis
18.
J Vasc Surg Venous Lymphat Disord ; 10(1): 139-145.e1, 2022 01.
Article in English | MEDLINE | ID: mdl-34530177

ABSTRACT

BACKGROUND: Chronic venous disease is a frequent vascular condition. International societies have recommended the use of health-related quality of life (HRQoL) instruments in the assessment of patients with vascular diseases. Thus, the Freiburg Life Quality Assessment for chronic venous disease, 10-item questionnaire (FLQA-VS-10) was developed. The aim of the present study was to validate the FLQA-VS-10 in a prospective study. METHODS: We recruited 100 patients with recurrent varicosis or incomplete or complete venous insufficiency undergoing interventional vein treatment (high ligation of the great or small saphenous vein or endovenous ablation therapy). These patients completed the FLQA-VS-10 and instruments assessing convergent validation criteria at four points: preoperatively (T1), postoperatively (T2) and twice 3 years later with a 1-week interval (T3 and T4). RESULTS: The mean age was 56.0 ± 13.7 years, and 66.0% were women. The patients had presented with recurrent varicosis of the saphenofemoral junction (28.0%), recurrent varicosis of the saphenopopliteal junction (1.0%), incomplete or complete insufficiency of the great saphenous vein (69.0%), or complete insufficiency of the small saphenous vein (2.0%). The items showed few missing values. The FLQA-VS-10 global score showed no ceiling effect (patients reporting the highest possible impairments in HRQoL) but did show a floor effect (patients reporting the lowest possible impairments in HRQoL), which was highest at the postoperative assessments. The internal consistency of the global score was high at all measurement points. A convergent validity and responsiveness analysis revealed that the FLQA-VS-10 correlated in the expected direction with the convergent instruments, including the Freiburg Life Quality Assessment for venous diseases (venous disease-specific HRQoL) and the five-level EQ-5D (generic HRQoL). Data from T3 and T4 revealed high test-retest reliability (intraclass correlation, 0.92). Overall, the patients stated that the FLQA-VS-10 was comprehensible, comprehensive, and easy to complete. CONCLUSIONS: Our data suggest that the FLQA-VS-10 is a reliable, valid, responsive, and feasible HRQoL questionnaire for patients with chronic venous diseases. This questionnaire can serve as short and easy-to-use instrument to assess patient-reported outcomes in the treatment of these patients.


Subject(s)
Diagnostic Self Evaluation , Psychometrics , Quality of Life , Self Report , Adult , Aged , Chronic Disease , Female , Humans , Male , Middle Aged , Prospective Studies , Varicose Veins , Venous Insufficiency
19.
Acta Derm Venereol ; 102: adv00641, 2022 Jan 31.
Article in English | MEDLINE | ID: mdl-34904689

ABSTRACT

People with visible skin diseases often experience stigmatisation. The aim of this study was to develop and evaluate a new intervention for medical students to counter the stigmatisation of people with skin diseases. The intervention was evaluated using a randomised controlled design. Effectiveness was assessed at 3 time points. Data from 127 participants were analysed. Regarding the outcome "social distance", a significant difference between the measurement points was observed for the intervention group (χ2(2) = 54.32, p < 0.001), which also showed a significant effect on agreement with negative stereotypes (F(1.67, 118.67) = 23.83, p < 0.001, partial η2 = 0.25). Regarding the outcome "agreement with disease-related misconceptions", a significant difference between the measurement time points was observed for the intervention group (χ2(2) = 46.33, p < 0.001); similar results were found for the outcome "stigmatising behaviour" (F(1.86, 131.89) = 6.16, p = 0.003, partial η2 = 0.08). The results should encourage medical faculties to invest in such courses in order to prevent stigmatisation of people with skin diseases.


Subject(s)
Skin Diseases , Students, Medical , Chronic Disease , Humans , Skin Diseases/diagnosis , Skin Diseases/therapy , Stereotyping
20.
Health Expect ; 24(5): 1790-1800, 2021 10.
Article in English | MEDLINE | ID: mdl-34318568

ABSTRACT

BACKGROUND: Chronic visible skin diseases are highly prevalent, and patients affected frequently report feeling stigmatised. Interventions to reduce stigmatisation are rare. OBJECTIVES: This study aimed to evaluate the effectiveness of a structured short intervention in reducing stigmatising attitudes towards psoriasis in future educators. METHODS: The intervention consisted of four components: (1) self-reflection, (2) education on skin diseases, (3) contact between participants and a person with psoriasis and (4) practising of knowledge via case studies. A quasi-experimental, pre-post study design was chosen with a nonrandomized contemporaneous control group that attended regular lessons. The main outcomes were participants' desire for social distance, stereotype endorsement, illness-related misconceptions and intended behaviour. Intervention effects were analysed using mixed repeated-measures analysis of variance, with Bonferroni post-hoc tests for pairwise comparisons. RESULTS: The sample consisted of 221 students attending vocational training as educators (n = 118 intervention group, n = 103 control group). While no effect of the intervention was found in social distance, small to large effect sizes were observed for intended behaviour (r = .14), illness-related misconceptions (r = .28) and stereotype endorsement (r = .42). The intervention group reported significantly higher satisfaction with the seminar compared to the control group. CONCLUSIONS: Overall, the short intervention was effective at reducing stigmatising attitudes in future educators. In perspective, revised versions could help in reducing stigmatisation in various demographics and promote patient empowerment by acknowledging and including them as experts on their own behalf. PATIENT OR PUBLIC CONTRIBUTION: Patient advocate groups were consulted and involved in the superordinate destigmatization research programme and intervention.


Subject(s)
Psoriasis , Stereotyping , Attitude , Chronic Disease , Humans
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