RESEARCH

LEARNING FROM EXPERTS: ASKING PATIENTS

 

 

Our mission is to strengthen the focus on the patient perspective in medicine by using patient-reported outcomes measures (PROMs) and by learning about the needs and experiences of people living with a chronic disease.

 

 

These are some examples of the questions we want to answer with our research:

What is important to patients?

What are their experiences in the healthcare system?

What do healthcare providers need to successfully use PROMs in daily practice?

What do patients expect from their treatment?

How do patients and clinicians communicate?

 

OUR EXPERTISE

 

We make use of a broad range of scientific methods allowing us to get a comprehensive understanding of the patient perspective.

As research group at the Institute of Health Care Research in Dermatology and Nursing, our research is rooted in the dermatological field. Within the last decade, we have extended our research to further medical areas, including neurology, oncology, and others.

Our key topics are:

 

  • Health-related quality of life

  • Subjective well-being

  • Patient-defined treatment goals

  • Patient-relevant treatment benefit

  • Subjective symptoms

  • Patient-clinician interaction

  • Patient experiences in the healthcare system

We make use of:

 

  • Qualitative methods

    • In-depth interviews

    • Focus groups

    • Document analysis

  • Quantitative methods

    • Psychometric evaluation

    • Item-response theory

    • Multivariate analyses

    • Ecological momentary assessment

  • Mixed-methods

Our research is funded by the DFG (German Research Foundation), the BMBF (German Federal Ministry of Education and Research), the EADV (European Academy for Dermatology and Venerology), pharmaceutical industry and others.

 

In our research projects, we cooperate with a wide range of clinical, research, and industry partners, such as the School of Health and Related Research (ScHARR) at University of Sheffield; the School of Health Sciences, University of Dundee; the Specialized Hospital Bad Bentheim; the Department of Dermatology at the University Hospital Schleswig-Holstein; AstraZeneca; Almirall; Urgo; and many more.

Example project:

  • Title: Development and validation of a tool for the assessment of benefit from treatment of allergic rhinitis in children and adolescents (PBI-AR-K)
  • Aim: To develop a questionnaire for the assessment of benefits from treatment of allergic rhinitis in children and adolescents, the PBI-AR-K, and to evaluate its psychometric properties in children and adolescents being treated with sublingual immunotherapy
  • "Janke et al. under review: Development and validation of a tool for the assessment of benefit from treatment of allergic rhinitis in children and adolescents (PBI-AR-K)" 

Example project: 

  • Title: Harmonized Assessment of Quality of Life in Patients with Chronic Wounds: Validation of the Wound-QoL in 10 European Countries (HAQOL)
  • Aim: To validate the Wound-QoL questionnaire in 10 European countries, to determine psychometric properties using item-response theory, and to analyze patient-perceived social support and social role
     

Psoriasis

Example project:

  • Title: How important is subjective well-being for patients? A qualitative interview study of people with psoriasis (DESQ-Relevance)
  • Aim: To investigate the importance of affective subjective well-being as an outcome of psoriasis treatment from the patient's perspective

PubMed

Atopic dermatitis

Example project:

  • Title: Inequalities in access to medication for atopic dermatitis and alopecia areata in Germany: A mixed-methods study (AMEDA)
  • Aim: To describe and explain healthcare disparities in adult patients with atopic dermatitis and alopecia areata in Germany with a special focus on medication, and to deduce recommendations for action

 

Other dermatological conditions
Example project:

  • Title: Systematic Review on Measurement Properties of Patient-Reported Outcome Measures for Pruritus
  • Aim: To systematically evaluate studies on the measurement properties of patient-reported outcome measures in pruritus

PubMed

PubMed

Example project:

  • Title: Developing a preference-based quality of life measure to determine the impact of hypoglycaemia in people with diabetes (Hypo‐RESOLVE). In cooperation with University of Sheffield
  • Aim: Cognitive debriefing of the pilot questionnaire in qualitative interviews with patients and clinicians (stage 2 of the Hypo‐RESOLVE project)

Example project:

  • Title: Diagnostic latency in ME/CFS and post-COVID: causes, consequences and potential for improvement - a mixed-methods study (DiaMECO)
  • Aim: To identify factors that promote or hinder early diagnosis of ME/CFS and post-COVID, to describe the consequences of delayed diagnosis, and to derive possible measures that promote early diagnosis
  • Funding: Innovationsfonds 01VSF24045

 

Example project: 

  • Title: Impact of Long COVID on the European workforce – a multinational representative survey
  • Aim: To investigate the prevalence of Long COVID in working-age people from Germany, United Kingdom, Denmark, Netherlands, France, Portugal and Italy, and to investigate effects of Long COVID on workability, work performance, and everyday activities

 

Example project: 

  • Title: Patient-reported outcome measures for Post COVID-19 condition: A systematic review
  • Aim: To conduct a systematic review of the quality of existing PROMs for use in patients with Post COVID-19 conditions and to derive recommendations for their use in future research. In cooperation with Otto von Guericke University Magdeburg (project lead)

Example project: 

  • Title: An interactive workshop for medical students on destigmatising people with ME/CFS
  • Aim: Developing and evaluating a workshop for medical students with the aim to reduce the stigmatisation of people with ME/CFS by future doctors

Example project:

  • Title: Identifying needs and goals of women receiving midwifery care (MiCa)
  • Aim: To identify women’s needs when receiving care from midwives throughout the whole span of midwifery care

Example project:

  • Title: Development of an ambulatory assessment version of the EQ-5D-5L in people with Muliple Sclerosis (EQ-5D-AA). In cooperation with University of Sheffield
  • Aim: To develop an ambulatory assessment version of the EQ-5D-5L where patients rate their health on mobile phones multiple times per day over several days, and to assess its feasibility and face validity

PubMed

Example project:

  • Title: German melanoma patients' willingness to tolerate toxicity during adjuvant treatment (GerMelaTox-A). In cooperation with University Hospital Schleswig-Holstein
  • Aim: To elicit preferences of German melanoma patients for toxicities during BRAF/MEKi treatment with moderate-to-severe side effects in an adjuvant treatment setting

Example project:

  • Title: Development and validation of an instrument to measure patient-defined benefit from orthopaedic rehabilitytion. In cooperation with DianaKlinik Bad Bevensen
  • Aim: To develop and validate a Patient Benefit Index versions specific for rehabilitation for dorsopathy and after hip or knee endoprothesis

Example project:

  • Title: Longitudinal validation study of the FLQA-VS-10 
  • Aim: To determine psychometric properties of the FLQA-VS-10, a disease-specific questionnaire for assessing health-related quality of life in patients with chronic vein disease

PubMed