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Atopic Dermatitis

Values and Preferences of Patients and Caregivers Regarding Treatment of Atopic Dermatitis (Eczema)A Systematic Review

To identify the key insights or developments described in this article
1 Credit CME
JAMA Dermatology
Published Online: January 25, 2023
Review
Keon Andre Maleki-Yazdi, MD, MSc1;
Anja Fog Heen, MD2;
Irene X. Zhao, BHSc1;
Gordon H. Guyatt, MD, MSc, OC1,3;
Erica A. Suzumura, MSc4;
Nima Makhdami, MD1;
Lina Chen, BSc5;
Tonya Winders, MBA6;
Kathryn E. Wheeler, MD7;
Julie Wang, MD8;
Jonathan Spergel, MD, PhD9;
Jonathan I. Silverberg, MD, MPH, PhD10;
Peck Y. Ong, MD11;
Monica O’Brien, MBS12;
Stephen A. Martin, MD, EdM13;
Peter A. Lio, MD14;
Mary Laura Lind, PhD15;
Jennifer LeBovidge, PhD16;
Elaine Kim, BScPhrm, RPh17;
Joey Huynh, MPT18;
Matthew Greenhawt, MD, MBA, MSc19;
Winfred T. Frazier, MD, MPH20;
Kathy Ellison, MEd21;
Korey Capozza, MPH22;
Anna De Benedetto, MD23;
Mark Boguniewicz, MD19,24;
Wendy Smith Begolka, MBS25;
Rachel Netahe Asiniwasis, MD, MSc26;
Lynda C. Schneider, MD16;
Derek K. Chu, MD, PhD1,3,27
Author Affiliations
  • 1Department of Medicine, McMaster University, Hamilton, Canada
  • 2Department of Medicine, Lovisenberg Diaconal Hospital, Oslo, Norway
  • 3Department of Health Research Methods, Evidence & Impact, McMaster University, Hamilton, Canada
  • 4Department of Preventive Medicine, Faculdade de Medicina Universidade de Sao Paulo, Sao Paulo, Brazil
  • 5Faculty of Medicine, University of Ottawa, Ontario, Canada
  • 6Allergy & Asthma Network, Vienna, Virginia
  • 7Department of Pediatrics, University of Florida, Gainesville
  • 8Icahn School of Medicine at Mount Sinai, New York City, New York
  • 9Division of Allergy and Immunology, Children’s Hospital of Philadelphia, Department of Pediatrics–Perelman School of Medicine at University of Pennsylvania, Philadelphia
  • 10Department of Dermatology, The George Washington University School of Medicine and Health Sciences, Washington, DC
  • 11Children’s Hospital Los Angeles, University of Southern California, Los Angeles
  • 12Tufts University School of Medicine, Boston, Massachusetts
  • 13University of Massachusetts Chan Medical School, Worcester
  • 14Northwestern University Feinberg School of Medicine, Chicago, Illinois
  • 15School for Engineering of Matter, Transport and Energy, Arizona State University, Tempe
  • 16Boston Children’s Hospital, Harvard Medical School, Boston, Massachusetts
  • 17Toronto, Ontario
  • 18Orthopedic Neurological Rehabilitation, Northridge, California
  • 19University of Colorado School of Medicine, Aurora
  • 20Department of Family Medicine, UPMC St Margaret, Pittsburgh, Pennsylvania
  • 21Westerville, Ohio
  • 22Global Parents for Eczema Research, California
  • 23Department of Dermatology; University of Rochester Medical Center, Rochester, New York
  • 24National Jewish Health, Denver, Colorado
  • 25National Eczema Association, Novato, California
  • 26Origins Dermatology Centre, University of Saskatchewan, Regina, Saskatchewan, Canada
  • 27The Research Institute of St Joe's Hamilton, Hamilton, Canada
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Key Points

Question  What do patients and caregivers value when choosing treatments for atopic dermatitis?

Findings  In this systematic synthesis of 62 studies including 19 442 participants, patients and caregivers preferred avoiding adverse effects and valued treatment approaches that relieve itching and burning, are minimally disruptive to daily activities, have limited visibility, and sparingly use topical corticosteroids. Some studies presented varied perspectives, and 18 were at high risk for industry sponsorship bias.

Meaning  In the first systematic review to address patient values and preferences in the management of atopic dermatitis to our knowledge, 6 key themes that may inform optimal clinical care, practice guidelines, and future research have been identified.

Abstract

Importance  Patient values and preferences can inform atopic dermatitis (AD) care. Systematic summaries of evidence addressing patient values and preferences have not previously been available.

Objective  To inform American Academy of Allergy, Asthma & Immunology (AAAAI)/American College of Allergy, Asthma and Immunology (ACAAI) Joint Task Force on Practice Parameters AD guideline development, patient and caregiver values and preferences in the management of AD were systematically synthesized.

Evidence Review  Paired reviewers independently screened MEDLINE, Embase, PsycINFO, and CINAHL databases from inception until March 20, 2022, for studies of patients with AD or their caregivers, eliciting values and preferences about treatment, rated risk of bias, and extracted data. Thematic and inductive content analysis to qualitatively synthesize the findings was used. Patients, caregivers, and clinical experts provided triangulation. The GRADE-CERQual (Grading of Recommendations Assessment, Development and Evaluation–Confidence in the Evidence from Reviews of Qualitative Research) informed rating of the quality of evidence.

Findings  A total of 7780 studies were identified, of which 62 proved eligible (n = 19 442; median age across studies [range], 15 years [3-44]; 59% female participants). High certainty evidence showed that patients and caregivers preferred to start with nonmedical treatments and to step up therapy with increasing AD severity. Moderate certainty evidence showed that adverse effects from treatment were a substantial concern. Low certainty evidence showed that patients and caregivers preferred odorless treatments that are not visible and have a minimal effect on daily life. Patients valued treatments capable of relieving itching and burning skin and preferred to apply topical corticosteroids sparingly. Patients valued a strong patient-clinician relationship. Some studies presented varied perspectives and 18 were at high risk for industry sponsorship bias.

Conclusions and Relevance  In the first systematic review to address patient values and preferences in management of AD to our knowledge, 6 key themes that may inform optimal clinical care, practice guidelines, and future research have been identified.

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Allergy and Clinical Immunology Dermatology Atopic Dermatitis
Article Information

Accepted for Publication: November 17, 2022.

Published Online: January 25, 2023. doi:10.1001/jamadermatol.2022.6045

Corresponding Author: Derek K. Chu, MD, PhD, Department of Medicine, McMaster University. Room 3H30 McMaster University Medical Centre, 1280 Main St West, Hamilton, Ontario, Canada (chudk@mcmaster.ca).

Author Contributions: Drs Maleki-Yazdi and Chu had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.

Concept and design: Maleki-Yazdi, Heen, Zhao, Guyatt, Makhdami, Winders, Wheeler, Spergel, Silverberg, Ong, LeBovidge, Frazier, Capozza, De Benedetto, Schneider, Chu.

Acquisition, analysis, or interpretation of data: Maleki-Yazdi, Heen, Zhao, Suzumura, Makhdami, Chen, Wang, Silverberg, Ong, O'Brien, Martin, Lio, Lind, Kim, Huynh, Greenhawt, Ellison, Boguniewicz, Smith Begolka, Asiniwasis, Schneider, Chu.

Drafting of the manuscript: Maleki-Yazdi, Heen, Zhao, Makhdami, Kim, Huynh, Frazier, Ellison, Chu.

Critical revision of the manuscript for important intellectual content: Maleki-Yazdi, Heen, Zhao, Guyatt, Suzumura, Makhdami, Chen, Winders, Wheeler, Wang, Spergel, Silverberg, Ong, O'Brien, Martin, Lio, Lind, LeBovidge, Greenhawt, Capozza, De Benedetto, Boguniewicz, Smith Begolka, Asiniwasis, Schneider, Chu.

Statistical analysis: Maleki-Yazdi, Zhao, Makhdami, Winders, Wheeler, Chu.

Obtained funding: Chu.

Administrative, technical, or material support: Maleki-Yazdi, Zhao, Makhdami, Chen, O'Brien, Schneider, Chu.

Supervision: Maleki-Yazdi, Heen, Guyatt, Wang, Spergel, Ong, Greenhawt, Frazier, De Benedetto, Chu.

Conflict of Interest Disclosures: Dr Wang reported grants from DBV Technologies, Aimmune, and Regeneron; and personal fees from ALK Abello, Genentech, and Jubilant HollisterStier outside the submitted work. Mrs Winders reported that her institution has received funding for unbranded disease awareness and education from the following: AbbVie, ALK, Amgen, AstraZeneca, Incyte, Lilly, GSK, Novartis, Pfizer, Sanofi/Regeneron, and TEVA. Dr Spergel reported grants from Abbott, Food Allergy Research and Education, Novartis, Regeneron, Sanofi, and Takeda; and royalties from UpToDate outside the submitted work. Dr Spergel also reported receiving payment or honoraria for lectures, presentations, speakers’ bureaus, manuscript writing, or educational events from Medscape and Rockpointe; and being on the safety monitoring board or advisory board of the National Institute of Allergy and Infectious Disease and Syneos. Dr Silverberg reported personal fees from AbbVie, AObiome, Arcutis, Alamar, Amgen, Arena, Arcutis, Asana, Aslan, BioMX, Biosion, Bodewell, Boehringer-Ingelheim, Cara, Castle Biosciences, Celgene, Connect Biopharma, Dermavant, Dermira, Dermtech, Eli Lilly, Galderma, GlaxoSmithKline, Incyte, Kiniksa, Leo Pharma, Menlo, Novartis, Optum, Pfizer, RAPT, Regeneron, Sanofi Genzyme, Shaperon, Union; and grants from Incyte and Pfizer outside the submitted work. Dr Ong reported grants from Incyte, LEO Pharmaceuticals, Regeneron, Sanofi Genzyme; and personal fees from Incyte, Janssen, Sanofi Genzyme, AbbVie, and Pfizer outside the submitted work. Dr Lio reported personal fees for serving on advisory boards for Almirall, Arbonne, ASLAN Pharmaceuticals, Bodewell, Boston Skin Science, Bristol Myers Squibb, Burt's Bees, Castle Biosciences, Codex Labs, Concerto Biosciences, Dermavant, Dermira, Exeltis, Franklin Biosciences, IntraDerm, Janssen, Johnson & Johnson, Kaleido Biosciences, Kimberly-Clark, Kiniksa, KPAway, Level Ex, Lipidor, Menlo Therapeutics, Merck, Micreos Health, My-Or Diagnostics, Procter & Gamble, Realm Therapeutics, Skinfix, UCB, Unilever, Verrica; for serving on an advisory board, as a speaker, and an investigator for AbbVie and Regeneron; for serving as a consultant for Amyris; for serving as an advisor and investigator for AOBiome; for serving on an advisory board and as a speaker for Eli Lilly, Galderma, La Roche-Posay, LEO Pharmaceuticals, L'Oreal, MyOR Diagnostics, Pfizer, Pierre-Fabre, Sanofi; for serving as a speaker for Hyphens Pharma, Genzyme, and Incyte; grants from the Eczema Foundation and National Eczema Association (NEA) for serving as an investigator. Dr Lio also served on the board of directors for the NEA, served on the advisory board for Theraplex (with a patent pending with royalties paid), is an investor at LearnSkin, and has stock options from the following companies: Altus Health, Boston Skin Science, Concerto Biosciences, Franklin Biosciences (aka Altus labs), and Micreos Health. Dr LeBovidge reported grants from Pfizer to develop atopic dermatitis (AD) patient education materials (unrestricted educational grant) outside the submitted work. Dr Greenhawt is a member of physician and medical advisory boards for Sanofi/Regeneron, Genentech, Novartis, Pfizer, US World Meds; has received honoraria for lectures from ImSci and the MedLearningGroup; reported personal fees from DBV, Pfizer, Novartis, Aquestive, Nutricia, Sanofi/Regeneron, Genentech, Allergy Therapeutics, ALK-Abello, US World Meds, Allegenis, Prota, AstraZeneca, RMSI, and multiple state and local allergy societies; and nonfinancial support from the National Peanut Board, International Food Protein Induced Enterocolitis Syndrome Association, American College of Allergy Asthma and Immunology (ACAAI), Joint Task Force on Practice Parameters (JTFPP), Brighton Collaboration Criteria Vaccine Anaphylaxis 2.0 working group; and grants from Agency for Healthcare Quality and Research (support ended in 2020) outside the submitted work. Mrs Capozza reported grants from LEO Pharmaceuticals, Sanofi/Regeneron, Incyte, Galderma, AbbVie, Lilly; and personal fees from Incyte and Sanofi/Regeneron outside the submitted work. Dr De Benedetto is an investigator for Dermira and Novartis; reported grants from Pfizer and Kiniksa; and personal fees from dMed Biopharmaceutical Co, Ltd (consultant) outside the submitted work. Dr Boguniewicz conducts research at Regeneron and Incyte and is part of advisory boards and consults for AbbVie, Janssen, LEO Pharmaceuticals, Lilly, Pfizer, Regeneron, Sanofi, and Genzyme outside the submitted work. Ms Smith Begolka reported grants from Pfizer paid to the institution, personal fees from Pfizer and Incyte paid to NEA, and being a salaried employee for NEA outside the submitted work. Dr Schneider reported grants from Regeneron Pharmaceuticals paid to the institution and Pfizer paid to a colleague; personal fees for serving on an advisory board from Sanofi and LEO Pharmaceuticals; and has served on the advisory board for the NEA outside the submitted work. No other disclosures were reported.

Funding/Support: This work was commissioned by the American Academy of Allergy, Asthma & Immunology (AAAAI) and ACAAI through the JTFPP to inform upcoming guidance on management of AD.

Role of the Funder/Sponsor: The funder contributed to defining the scope of the review but otherwise had no role in study design and data collection. Data were interpreted and the report drafted and submitted without funder input. The funder was provided a copy of the report at time of submission. The review team had the ability, but not obligation, to consider the funder’s feedback. The first and corresponding author had full access to all data in the study and had final responsibility for the decision to submit for publication.

Additional Contributions: We thank all the patients and caregiver partners part of the 2022 AAAAI/ACAAI JTFPP Atopic Dermatitis Guidelines.

Disclaimer: The authors, editors, and journal take a neutral position with respect to territorial claims in published maps and institutional affiliations.

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