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1.
BMJ Open ; 12(9): e055477, 2022 09 23.
Artigo em Inglês | MEDLINE | ID: mdl-36153012

RESUMO

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).


Assuntos
Ansiedade , Depressão , Prurido , Psoríase , Adulto , Ansiedade/diagnóstico , Ansiedade/epidemiologia , Comorbidade , Estudos Transversais , Citocinas , Depressão/diagnóstico , Depressão/epidemiologia , Feminino , Humanos , Sistema Hipotálamo-Hipofisário , Masculino , Pessoa de Meia-Idade , Sistema Hipófise-Suprarrenal , Prurido/epidemiologia , Prurido/etiologia , Prurido/psicologia , Psoríase/complicações , Psoríase/epidemiologia , Psoríase/psicologia , Qualidade de Vida , Índice de Gravidade de Doença , Inquéritos e Questionários
2.
J Dermatolog Treat ; 33(5): 2482-2487, 2022 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-34547964

RESUMO

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.


Assuntos
Dermatite Atópica , Dermatopatias , Estudos Transversais , Dermatite Atópica/complicações , Humanos , Prurido , Qualidade de Vida/psicologia , Higiene da Pele , Dermatopatias/diagnóstico
3.
Wound Repair Regen ; 29(3): 452-459, 2021 05.
Artigo em Inglês | MEDLINE | ID: mdl-33595907

RESUMO

The Wound-QoL is an often used reliable and valid measure, originally developed in Germany. It has been sequentially translated and validated for other languages/countries, for the measurement of health-related quality of life (HRQoL) in patients with chronic wounds. However, a study from the United States postulated its benefits from further adaptations. Furthermore, some patients struggled to provide an answer for some of the items. We aimed to test the cross-cultural structure and psychometric performance of the questionnaire to suggest necessary revisions. This cross-sectional analysis of existing data sets included 1185 patients from Germany, the US, the Netherlands, Spain, Sweden, and Israel. Patients in the U.S. Wound Registry completed the Wound-QoL during routine care. Different studies comprised the data collection in the other countries. Almost half of the patients were women (48.4%). Furthermore, 42.6% were diagnosed with leg ulcers. Their average age was 66 years. We used a confirmatory factor analysis and an unconstrained graded response model. We revised and shortened the Wound-QoL from 17 to 14 items. In addition, we supported the cross-cultural metric invariance of the revised Wound-QoL questionnaire. The new version with 14 items and three dimensions revealed good psychometric properties with Cronbach's alpha (α) of 0.913 for the total score, and 0.709-0.907 for different dimensions. Furthermore, we provided strict invariance for different clinical variables. In conclusion, the revised Wound-QoL is a reliable and cross-cultural instrument to measure the HRQoL on patients with chronic wounds. Future studies should analyse the revised Wound-QoL for convergent validity with generic HRQoL questionnaires as well as for determining its sensitivity to clinical change.


Assuntos
Qualidade de Vida , Cicatrização , Idoso , Estudos Transversais , Feminino , Humanos , Psicometria , Reprodutibilidade dos Testes , Inquéritos e Questionários
4.
Wound Repair Regen ; 28(5): 609-616, 2020 09.
Artigo em Inglês | MEDLINE | ID: mdl-33372379

RESUMO

People with chronic wounds perceive an impaired health-related quality of life (HRQoL). For the assessment of HRQoL, valid instruments are needed. Therefore, the Wound-QoL questionnaire was originally developed and psychometrically validated for use in Germany. As the Wound-QoL is to be used in numerous countries, international versions are required. Therefore, this study aimed to psychometrically validate the U.S. English Wound-QoL version. Upon translation into U.S. English, psychometric testing was performed based on cross-sectional data deriving from the U.S. Wound Registry. Besides descriptive statistics, internal consistency and concurrent validity were tested. In addition, a graded response model was used. The sample consisted of 599 people with chronic wounds of different etiologies. Participants were between 18 and 95 years old, mean age was 63.7 (SD = 15.9) years. Gender was distributed almost equally, with 47.4% female patients. High internal consistency, low floor and ceiling effects of the subscales could be largely confirmed. The internal consistency of the global score was excellent, with α > .9. Concurrent validity between the Wound-QoL and pain, the surface area of the largest wound, total surface area, and total number of active wounds could be confirmed. In contrast, item response theory (IRT) analyses could not fully confirm the factorial model underlying the Wound-QoL subscales. Furthermore, the items regarding smell and discharge and the items on problems with hitting the wound against something, climbing stairs and feeling dependent on help from others showed a low item information in their belonging dimensions. In conclusion, the newly validated Wound-QoL is available for HRQoL measurement in people with chronic wounds in the United States. It showed good psychometric properties, demonstrating its reliability and validity. Therefore, the instrument may be used to assess HRQoL in clinical practice. However, IRT analyses showed that the instrument may benefit from future refinement.


Assuntos
Psicometria , Qualidade de Vida , Úlcera Cutânea/complicações , Inquéritos e Questionários , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Doença Crônica , Feminino , Alemanha , Humanos , Masculino , Pessoa de Meia-Idade , Medição da Dor , Sistema de Registros , Reprodutibilidade dos Testes , Traduções
5.
Eur J Dermatol ; 30(3): 259-266, 2020 Jun 01.
Artigo em Inglês | MEDLINE | ID: mdl-32666926

RESUMO

BACKGROUND: Treatment of chronic spontaneous urticaria (CSU) is founded on evidence-based guidelines. However, specific patient needs and benefits of therapy have not been outlined at the guideline level. OBJECTIVES: The aim of this study was to characterise the specific needs and treatment goals in chronic spontaneous urticaria from the patient's perspective. MATERIALS AND METHODS: This cross-sectional study was conducted in four German outpatient dermatology clinics. Patient needs and potential therapy goals were determined with the validated Patient Needs Questionnaire (PNQ) using a specific version for chronic urticaria. Further instruments to characterise the link between patient needs and disease burden were disease-specific (CU-Q2oL), skin-generic (DLQI) and health-generic (EQ VAS) scales. RESULTS: Data from 103 patients were analysed (age: 43.92 ± 14.96 years; 71.4% female). Among the most important therapeutic goals were the absence of visible skin lesions (92.3% important/very important), to be free of itching (91.5%) and the desire to be healed of all skin defects (89.5%). All 26 items were found to be quite important/very important by at least 30% of the respondents. Specific profiles of patient needs were found to be related to sex and disease duration. CONCLUSION: Innovative drugs and patient-centred individualised treatment may increase overall benefits. Regardless of the treatment chosen, shared decision making in the management of the disease should be a goal.


Assuntos
Urticária Crônica/tratamento farmacológico , Planejamento de Assistência ao Paciente , Preferência do Paciente , Qualidade de Vida , Adulto , Idoso , Urticária Crônica/complicações , Efeitos Psicossociais da Doença , Estudos Transversais , Tomada de Decisão Compartilhada , Feminino , Nível de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação das Necessidades , Prurido/etiologia , Prurido/terapia , Fatores Sexuais , Inquéritos e Questionários , Fatores de Tempo
6.
Eur J Dermatol ; 30(3): 267-278, 2020 Jun 01.
Artigo em Inglês | MEDLINE | ID: mdl-32666927

RESUMO

Psoriasis may cause considerable disease burden. The involvement of sexually-sensitive/visible body areas has been associated with decreased quality of life (QoL), more depressive symptoms and stigmatisation experiences. To characterise the topical distribution of psoriasis in sexually-sensitive and visible areas, to examine its impact on QoL and to determine which specific patient needs should be addressed in routine care. Patients with psoriasis vulgaris were recruited within a cross-sectional nationwide survey, involving 157 randomly assigned German dermatology practices/clinics. The main outcome measures were the EuroQoL visual analogue scale (EQ VAS), the Dermatology Life Quality Index (DLQI), the Patient Needs Questionnaire (PNQ) and a grid scheme for topical distribution of psoriasis. The sample included 2,009 patients (43.7% female; 21.8% ≥ 65 years; 64.2% with lesions in sexually-sensitive areas and 86.2% with lesions in visible areas). Patients with concomitant involvement of sexually-sensitive and visible areas presented increased DLQI impairments relative to patients with no involvement of sexually-sensitive or visible areas (F(3, 1723) = 4.091, p = 0.007). Significant differences were also found for patient needs dimensions (PNQ) depending on the body areas affected (F(15, 4602) = 2.936, p < 0.001). Significant effects of gender and age group were also observed. Increased disease severity, lesions in both sexually-sensitive/visible or only visible areas, and increased QoL impairment were associated with specific patient needs. These results highlight the need for proactive evaluation of difficult-to-communicate impairments and the requirements for patient-centred routine care.


Assuntos
Efeitos Psicossociais da Doença , Psoríase/psicologia , Psoríase/terapia , Qualidade de Vida , Adulto , Idoso , Superfície Corporal , Estudos Transversais , Face , Feminino , Dedos , Virilha , Nível de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Unhas , Pescoço , Avaliação das Necessidades , Mamilos , Planejamento de Assistência ao Paciente , Pênis , Região Sacrococcígea , Couro Cabeludo , Escroto , Índice de Gravidade de Doença , Inquéritos e Questionários , Tórax , Vulva
7.
PLoS One ; 15(7): e0235091, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32609733

RESUMO

Genital psoriasis affects 2-5% of psoriasis patients; generalised plaque or intertriginous psoriasis also affects the genital area in 29-40% of cases. Anogenital psoriasis has been associated with significant quality of life impairments, but little is known about specific patient needs/treatment goals. This study aimed to examine the overall and sex-related disease burden, patient needs and treatment benefits in patients with anogenital psoriasis, compared to patients with psoriasis not affecting the anal/genital areas. Within the cross-sectional nationwide survey, 2,009 participants were consecutively recruited in 157 randomly assigned German dermatology practices and clinics, according to the following inclusion criteria aged 18 years or over; diagnosis of psoriasis vulgaris; ability to answer the questionnaires; and written informed consent. Based on a high-resolution grid on the topical distribution of psoriasis, two groups were formed: anogenital psoriasis (n = 622) and comparison group (n = 1,303). Clinical severity was assessed by the Psoriasis Area and Severity Index (PASI). Patients completed the EuroQoL visual analogue scale (EQ VAS), the Dermatology Life Quality Index (DLQI), and the Patient Benefit Index (PBI). Patients with anogenital psoriasis had higher PASI (13.0±10.6 vs. 8.9±7.6, P < 0.001) and more DLQI impairments (8.9±6.9 vs. 7.0±6.2, P = 0.002) than controls. At the item-level, they also reported more sex-related DLQI impairments (DLQI-i9: 0.5±0.8 vs. 0.3±0.7, P < 0.001) and treatment needs (PBI-i17: 2.2±1.8 vs. 1.9±1.8, P = 0.001). A great percentage of missing/not-relevant responses was found for sex-related items (23.3-41.9%). These results suggest that the assessment of sex-related impairments and treatment needs should be prioritised in patients with anogenital psoriasis. Questionnaires may be used as a less uncomfortable way for patients to discuss their genital lesions and sexual function during healthcare visits. However, the great percentage of missing/not-relevant responses to sex-related items calls for in-depth assessments and effective patient-physician communication regarding these sensitive topics.


Assuntos
Assistência Centrada no Paciente , Psoríase/patologia , Adolescente , Adulto , Idoso , Canal Anal/patologia , Estudos Transversais , Feminino , Genitália/patologia , Humanos , Masculino , Pessoa de Meia-Idade , Relações Médico-Paciente , Psoríase/epidemiologia , Qualidade de Vida , Índice de Gravidade de Doença , Fatores Sexuais , Adulto Jovem
8.
PLoS One ; 11(4): e0153953, 2016.
Artigo em Inglês | MEDLINE | ID: mdl-27097033

RESUMO

Short stature has been associated with psychosocial impairments, but whether treatments and achieved height impact on health-related quality of life (HrQoL) and psychological functioning of children/adolescents is still controversial. This study aimed to examine the effects of height deviation and treatment status on psychosocial adaptation outcomes and to identify clinical and psychosocial determinants of internalizing/externalizing problems in a large cohort of short statured children/adolescents from seven European countries. Participants were 345 children aged 8-18 years with a clinical diagnosis of short stature and 421 parents of 4-18 year-old patients. Children and parents reported on psychological problems (Strengths and Difficulties Questionnaire), generic (KIDSCREEN) and condition-specific HrQoL (QoLISSY). According to analyses of covariance, children/adolescents with current short stature presented more parent-reported internalizing problems and lower self- and parent-reported condition-specific HrQoL, compared to patients with an achieved height above -2SD. Treated children self-reported better HrQoL than the untreated group. Hierarchical regression analysis showed that, rather than height-related clinical variables, children's sex, younger age and poorer HrQoL were the best predictors of psychological problems, explaining 39% of the variance in patient- and 42% in parent-reported internalizing problems, and 22% of the variance in patient- and 24% in parent-reported externalizing problems. Treatment status also moderated the negative links between patient-reported HrQoL and internalizing problems, explaining 2% of additional variance. These results suggest that children with current short stature are at greater risk for internalizing problems. Routine assessment of HrQoL in pediatric healthcare may help identify children for referral to specialized psychological assessment and intervention.


Assuntos
Nanismo/psicologia , Pais/psicologia , Qualidade de Vida , Adolescente , Análise de Variância , Criança , Pré-Escolar , Feminino , Humanos , Masculino , Inquéritos e Questionários
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