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Measuring patient-relevant benefits in the treatment of psoriasis with the Patient Benefit Index: development and preliminary validation of a 10-item short form

C. Blome1,  C.C. von Stülpnagel1, M. Augustin1, U. Mrowietz2, K. Reich1, H. Muehlan3, N. Kirsten1, A.K. Langenbruch1, C. Sorbe1, T.M. Klein

1Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, Germany

2 Psoriasis-Center, Department of Dermatology, University Medical Center Schleswig-Holstein, Campus Kiel, Germany

3 Department Health & Prevention, Institute of Psychology, University of Greifswald, Germany

Patient-relevant benefits from treatment of inflammatory skin diseases can be measured with the validated 25-item questionnaire Patient Benefit Index Standard version (PBI-S; www.patient-benefit-index.com). It consists of two parts: the Patient Needs Questionnaire, in which patients rate the importance of 25 different treatment goals, and the Patient Benefit Questionnaire, in which patients evaluate the achievement of these goals by therapy. From all items, an importance-weighted total benefit score is determined. However, shorter instruments are often preferable both in practice and in clinical trials. We therefore developed and tested a 10-item short form of the PBI-S named the ‘PBI-S-10’, which should maintain both content validity and good psychometric properties. The short form should allow for the calculation of a total score that indicates overall patient-relevant benefit and demonstrate high agreement with the long form.

Psychological (co)morbidity in patients with psoriasis: the impact of pruritus and anogenital involvement on symptoms of depression and anxiety and on body dysmorphic concerns – a cross-sectional study

N. da Silva1, M. Augustin1, C. Hilbring1, C.C. Braren-von Stülpnagel1, R. Sommer1

1 Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, Germany

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.

Patient-physician (Dis)agreement on their Reports of Body Surface Area Affected by Psoriasis and ist Associations with Disease Burden

N. da Silva1, M. Augustin1, C. Hilbring1, C.C. von Stülpnagel1, R. Sommer1

1 German Center for Health Services Research in Dermatology (CVderm), Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, Germany

The people-centred model of care for psoriasis emphasizes the importance of prioritizing patient’s needs and preferences in clinical decisions, along with physician-rated disease severity. However, patients and physicians often differ on their perceptions of disease severity, which might influence treatment adherence/satisfaction and health outcomes. This study aimed at understanding the extent and direction of patient–physician (dis)agreement on their reports of body surface area (BSA) affected by psoriasis and exploring which patient-reported outcomes (PROs) might contribute to explain the disagreement.

Measuring Well-being in Psoriasis: Psychometric Properties of the WHO-5 Questionnaire

R. Sommer1, L. Westphal1, U. Mrowietz2, S. Gerdes2, M. Augustin1

Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, Germany

Psoriasis-Center Kiel, Department of Dermatology, University Medical Center Schleswig-Holstein, Kiel, Germany

According to the definition of the World Health Organization, health is not only understood as the absence of disease, but also as the restoration of full physical, mental and social well-being. Therefore, in the management of psoriatic disease, well-being should be included as an important endpoint. So far, primarily burden-focused patient-reported outcome instruments such as the Dermatology Life Quality Index (DLQI) are used in practice and research, many showing marked limitations. Thus, the aim of this study was to test the psychometric properties of the generic WHO-5 questionnaire for the assessment of well-being in people with psoriasis.

Quality of life of children and adolescents with short stature: The twofold contribution of physical growth and adaptive height-related cognitive beliefs

B. Mergulhão1, P. J. Almeida2, H. Moreira1, C. Castro-Correia2, M. Bullinger3, M. C. Canavarro1, N. da Silva4 

1 Center for Research in Neuropsychology and Cognitive and Behavioral Intervention (CINEICC), Faculty of Psychology and Education Sciences, University of Coimbra, Rua do Colégio Novo, 3000-115, Coimbra, Portugal.

Pediatric Endocrinology Unit, Integrated Pediatric Hospital, São João Hospital Center, Porto, Portugal.

Department of Medical Psychology, Center for Psychosocial Medicine, University Medical Center Hamburg-Eppendorf (UKE), Hamburg, Germany

Center for Research in Neuropsychology and Cognitive and Behavioral Intervention (CINEICC), Faculty of Psychology and Education Sciences, University of Coimbra, Rua do Colégio Novo, 3000-115, Coimbra, Portugal. neuzambsilva@gmail.com.

This study aimed to examine the health-related quality of life (HrQoL), coping, height-related beliefs, and social support of children/adolescents with short stature, the sociodemographic, clinical, and psychosocial variables associated with HrQoL, and the moderating role of sociodemographic and clinical variables on the associations between psychosocial variables and HrQoL.

Exploring the burden of xerosis cutis and the impact of dermatological skin care from patient's perspective

C. C. von Stülpnagel1, M. Augustin1, N. da Silva1, L. Schmidt2, G.Nippel2, R. Sommer1

1Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, Germany

2Beiersdorf AG, Hamburg, Germany

J Dermatolog Treat. 2021 Sep 21:1-6

 

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.

Skin Lesions, Skin Care, and Characteristics of Pruritus in Patients Undergoing Haemodialysis

R. Sommer1, S. Ständer2, M. Augustin1

1Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, Germany

2Department of Dermatology and Center for Chronic Pruritus, University Hospital of Münster, Münster, Germany

Skin Pharmacol Physiol. 2021 Sep 14

 

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 re- quiring dialysis commonly suffer from pruritus with propor- tions between 22.0 and 90.0%. Few data on the characteris- tics and burden of such pruritus have been published. There- fore, the aim of this study was to investigate the extent and profiles of pruritus in such patients related to skin lesions and care.

Klinische Studien – Teil 1. Daten und Ergebnisse besser verstehen

C.C. von Stülpnagel, M. Augustin, R. Sommer

Der Deutsche Dermatologe 2021; 69 (2): 122-127

 

Klinische Studien liefern eine Menge an Daten. Wie kommen sie zustande und wie sind sie zu interpretieren? Dieser Beitrag stellt die Grundlagen aus Epidemiologie und klinischer Forschung vor. Teil zwei folgt dann in der März-Ausgabe des "Deutschen Dermatologen" und informiert über wichtige Studienarten.

Stigma in visible skin diseases - a literature review and development of a conceptual model

N. Germain1, M. Augustin2, C. Francois1, K. Legau3, N. Bogoeva4, M. Desroches1, M. Toumi5, R. Sommer2

1HEOR, Creativ-Ceutical, Paris, France

2Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, Germany

3LEO Pharma, Kopenhagen, Denmark

4HEOR, Creativ-Ceutical, Sofia, Bulgaria

5Public Health Department, Aix-Marseille University, Marseilles, France

J Eur Acad Dermatol Venereol. 2021 Jul;35(7):1493-1504

 

The burden of visible skin diseases (VSDs) includes not only physical symptoms but also psychosocial consequences such as depression, anxiety, impaired quality of life and low self-esteem. Stigmatization was shown to play a major role in people with skin diseases. The aim of the study was to review the evidence for the components, drivers and impacts of (self-)stigma, and to organize the data into a series of conceptual models.

Topologie der Psoriasis. Eine Prävalenzanalyse aus Real-World-Daten im Längs- und Querschnitt

C. Sorbe, R. Sommer, N. Kirsten, A. Danckworth, L.  Kühl, M. Augustin

Haut 2021; 32 (5): 212-214