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2022

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.

Developments in quality of life assessment in children with dermatological conditions: Validation protocol for the German version of the InToDermQoL

J. Traxler, N. da Silva, M. Augustin, R. Fölster-Holst, R. Sommer (2022, October)

Poster presented at the DKVF Conference, Potsdam, Germany 

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.

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.

Is Social Stigma Responsible for the Poor Psychological Adjustment of People with Visible Skin Disease? A Meta-Analysis

CFZ. Stuhlmann, S. Lysakova, C. Jordan, TA. Revenson (2022, April)

Poster preseted at the Society of Behavioral Medicine, Baltimore, MD.

How do dermatologists' personal models inform a patient-centred approach to management: a qualitative study using the example of prescribing a new treatment (Apremilast)

R. M. Hewitt1, C. Bundy1, A-L. Newi2, E. Chachos3, R.Sommer2, C.E. Kleyn4, Matthias Augustin2, C.E.M. Griffiths4,  C. Blome2

1School of Healthcare Sciences, College of Biomedical & Lifesciences, Cardiff University, Cardiff, UK

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

3Turner Institute for Brain and Mental Health, Monash University, Melbourne, Australia

4University of Manchester, The Dermatology Centre, Barnes Building, Salford Royal NHS 

Br J Dermatol. 2022 Jan 22. doi: 10.1111/bjd.21029

 

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.

Development and validation of an outcome instrument measuring dry skin - the Xerosis Area and Severity Index (XASI).

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

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

J Eur Acad Dermatol Venereol. 2022 Jan;36(1):e70-e72

 

The aim of this study was the development and validation of a composite measuring instrument for the assessment of the extent (surface area affected) and severity of xerosis in clinical practice and research.

Psychometric properties of the short version of the Freiburg Life Quality Assessment for chronic venous disease

T.M. Klein1, B. Bal2, A.L. Newi2, G. Bruning3, R. Sommer2, M. Augustin2, C. Blome2

1Institute for Health Services Research in Dermatology and Nursing, University Medical Center Hamburg-Eppendorf, Hamburg, Germany. Electronic address: t.klein@uke.de

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

3Institute for Scientific Phlebology, Krankenhaus Tabea, Hamburg, Germany

J Vasc Surg Venous Lymphat Disord. 2022 Jan;10(1):139-145.e1

 

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.

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.