The interrelation of scientific, ethical, and translational challenges for precision medicine with multimodal biomarkers – A qualitative expert interview study in dermatology research

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Abstract

This qualitative study examines the impact of scientific, ethical, and translational challenges of precision medicine for atopic dermatitis and psoriasis. The study explores how these challenges affect biomarker research for inflammatory skin diseases as identified by stakeholders, including patient board representatives, pharmaceutical industry partners, and postdoctoral and senior researchers from multiple disciplines in biomarker research. We recruited participating experts both within and associated with the international Biomarkers in Atopic Dermatitis and Psoriasis (BIOMAP) consortium to ensure representation of the different organizational units of the consortium. For the study, we followed the COREQ checklist. The interviews were conducted using GDPR-safe online platforms and the pseudonymized transcripts were analyzed using Atlas.ti. We analyzed the interviews from participants' personal experiences, topic-oriented, and group specific to identify the main themes presented in this article. The findings were presented to peers and to the wider BIOMAP audience, discussed, and a draft was circulated within the consortium for feedback. In this study, we identify and discuss the interrelation of challenges that are relevant to improving precision medicine with multimodal biomarkers. We show how scientific challenges can interrelate with ethical and translational issues, and explain these interdependencies and articulate epistemic and social factors of interdisciplinary collaboration. Based on our findings, we suggest that including patient representatives’ perspectives is crucial for highly interrelated and widely diverse research. The proposed integrative perspective is beneficial for all involved stakeholders. Effective communication of science requires reflection on the tension between scientific uncertainty and the goals of precision medicine. Furthermore, we show how changing the perception of the diseases, atopic dermatitis, and psoriasis can benefit patients beyond medical practice.

Highlights

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Discusses interrelations of challenges to improve precision medicine with multimodal biomarkers.
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Integrates perspectives of involved stakeholders to address uncertainties in precision medicine.
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Reflects on the tension between scientific uncertainty and the aims of precision medicine in medical practice.

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Most cited references 33

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Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups.

A Tong, P SAINSBURY, J. Craig (2007)

Qualitative research explores complex phenomena encountered by clinicians, health care providers, policy makers and consumers. Although partial checklists are available, no consolidated reporting framework exists for any type of qualitative design. To develop a checklist for explicit and comprehensive reporting of qualitative studies (in depth interviews and focus groups). We performed a comprehensive search in Cochrane and Campbell Protocols, Medline, CINAHL, systematic reviews of qualitative studies, author or reviewer guidelines of major medical journals and reference lists of relevant publications for existing checklists used to assess qualitative studies. Seventy-six items from 22 checklists were compiled into a comprehensive list. All items were grouped into three domains: (i) research team and reflexivity, (ii) study design and (iii) data analysis and reporting. Duplicate items and those that were ambiguous, too broadly defined and impractical to assess were removed. Items most frequently included in the checklists related to sampling method, setting for data collection, method of data collection, respondent validation of findings, method of recording data, description of the derivation of themes and inclusion of supporting quotations. We grouped all items into three domains: (i) research team and reflexivity, (ii) study design and (iii) data analysis and reporting. The criteria included in COREQ, a 32-item checklist, can help researchers to report important aspects of the research team, study methods, context of the study, findings, analysis and interpretations.

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Pathophysiology, Clinical Presentation, and Treatment of Psoriasis: A Review

April W. Armstrong, Charlotte Read (2020)

Approximately 125 million people worldwide have psoriasis. Patients with psoriasis experience substantial morbidity and increased rates of inflammatory arthritis, cardiometabolic diseases, and mental health disorders.

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Is Open Access

Global Skin Disease Morbidity and Mortality : An Update From the Global Burden of Disease Study 2013

Chante Karimkhani, Robert Dellavalle, Luc E. Coffeng … (2017)

Question What is the burden of skin disease worldwide? Findings In this observational study, skin diseases contributed 1.79% to the global burden of disease measured in disability-adjusted life years (DALYs). Skin diseases arranged in order of decreasing global DALYs are as follows: dermatitis (atopic, contact, seborrheic), acne vulgaris, urticaria, psoriasis, viral skin diseases, fungal skin diseases, scabies, melanoma, pyoderma, cellulitis, keratinocyte carcinoma, decubitus ulcer, and alopecia areata. Meaning Skin diseases remain a major cause of disability worldwide. An objective measure of burden, such as the DALY, allows for comparison of diverse diseases across geography and time. This study measures the burden of skin diseases worldwide. Importance Disability secondary to skin conditions is substantial worldwide. The Global Burden of Disease Study 2013 includes estimates of global morbidity and mortality due to skin diseases. Objective To measure the burden of skin diseases worldwide. Data Sources For nonfatal estimates, data were found by literature search using PubMed and Google Scholar in English and Spanish for years 1980 through 2013 and by accessing administrative data on hospital inpatient and outpatient episodes. Data for fatal estimates were based on vital registration and verbal autopsy data. Study Selection Skin disease data were extracted from more than 4000 sources including systematic reviews, surveys, population-based disease registries, hospital inpatient data, outpatient data, cohort studies, and autopsy data. Data metrics included incidence, prevalence, remission, duration, severity, deaths, and mortality risk. Data Extraction and Synthesis Data were extracted by age, time period, case definitions, and other study characteristics. Data points were modeled with Bayesian meta-regression to generate estimates of morbidity and mortality metrics for skin diseases. All estimates were made with 95% uncertainty intervals. Main Outcomes and Measures Disability-adjusted life years (DALYs), years lived with disability, and years of life lost from 15 skin conditions in 188 countries. Results Skin conditions contributed 1.79% to the global burden of disease measured in DALYs from 306 diseases and injuries in 2013. Individual skin diseases varied in size from 0.38% of total burden for dermatitis (atopic, contact, and seborrheic dermatitis), 0.29% for acne vulgaris, 0.19% for psoriasis, 0.19% for urticaria, 0.16% for viral skin diseases, 0.15% for fungal skin diseases, 0.07% for scabies, 0.06% for malignant skin melanoma, 0.05% for pyoderma, 0.04% for cellulitis, 0.03% for keratinocyte carcinoma, 0.03% for decubitus ulcer, and 0.01% for alopecia areata. All other skin and subcutaneous diseases composed 0.12% of total DALYs. Conclusions and Relevance Skin and subcutaneous diseases were the 18th leading cause of global DALYs in Global Burden of Disease 2013. Excluding mortality, skin diseases were the fourth leading cause of disability worldwide.

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Author and article information

Contributors

Nora Hangel

Journal

Journal ID (nlm-ta): Heliyon

Journal ID (iso-abbrev): Heliyon

Title: Heliyon

Publisher: Elsevier

ISSN (Electronic): 2405-8440

Publication date PMC-release: 24 June 2024

Publication date Collection: 15 July 2024

Publication date (Electronic): 24 June 2024

Volume: 10

Issue: 13

Electronic Location Identifier: e31723

Affiliations

[a ]Institute of History and Ethics in Medicine, TUM School of Medicine, Technical University of Munich, Munich, Germany

[b ]Leibniz Center for Science and Society (LCSS), Leibniz University Hannover, Hannover, Germany

[c ]Department of Science, Technology and Society (STS), School of Social Sciences and Technology, Technical University of Munich, Munich, Germany

Author notes

[* ]Corresponding author. Institute of History and Ethics in Medicine, TUM School of Medicine Technical University Munich Ismaningerstr. 22, 81675, Munich, Germany. nora.hangel@ 123456tum.de

Article

Publisher Item ID: S2405-8440(24)07754-5 Publisher ID: e31723

DOI: 10.1016/j.heliyon.2024.e31723

PMC ID: 11260963

PubMed ID: 39040296

SO-VID: 16b72bd3-62ff-4eb0-ad0f-8a619d360fd0

License:

This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).

History

Date received : 30 June 2023

Date revision received : 14 November 2023

Date accepted : 21 May 2024

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