Effect of communicating personalized rheumatoid arthritis risk on concern for developing RA: A randomized controlled trial

Allison A Marshall; Alessandra Zaccardelli; Zhi Yu; Maria G Prado; Xinyi Liu; Rachel Miller Kroouze; Sarah S Kalia; Robert C Green; Nellie A Triedman; Bing Lu; Kevin D Deane; Maura D Iversen; Elizabeth W Karlson; Jeffrey A Sparks

doi:10.1016/j.pec.2018.12.011

Effect of communicating personalized rheumatoid arthritis risk on concern for developing RA: A randomized controlled trial

Patient Educ Couns. 2019 May;102(5):976-983. doi: 10.1016/j.pec.2018.12.011. Epub 2018 Dec 10.

Authors

Affiliations

¹ Department of Medicine, Division of Rheumatology, Immunology and Allergy, Brigham and Women's Hospital, 60 Fenwood Road, 02115, Boston, MA, USA; Tufts University School of Medicine, 145 Harrison Avenue, 02111, Boston, MA, USA. Electronic address: Allison.Marshall@tufts.edu.
² Department of Medicine, Division of Rheumatology, Immunology and Allergy, Brigham and Women's Hospital, 60 Fenwood Road, 02115, Boston, MA, USA. Electronic address: azaccardelli@bwh.harvard.edu.
³ Department of Medicine, Division of Rheumatology, Immunology and Allergy, Brigham and Women's Hospital, 60 Fenwood Road, 02115, Boston, MA, USA. Electronic address: zhy872@mail.harvard.edu.
⁴ Department of Medicine, Division of Rheumatology, Immunology and Allergy, Brigham and Women's Hospital, 60 Fenwood Road, 02115, Boston, MA, USA. Electronic address: pradom@bu.edu.
⁵ Department of Medicine, Division of Rheumatology, Immunology and Allergy, Brigham and Women's Hospital, 60 Fenwood Road, 02115, Boston, MA, USA. Electronic address: xliu42@bwh.harvard.edu.
⁶ Department of Medicine, Division of Rheumatology, Immunology and Allergy, Brigham and Women's Hospital, 60 Fenwood Road, 02115, Boston, MA, USA. Electronic address: Rmillerkroouze@gmail.com.
⁷ Harvard T.H. Chan School of Public Health, 677 Huntington Avenue, 02115, Boston, MA, USA. Electronic address: sarah.kalia@gmail.com.
⁸ Harvard Medical School, 25 Shattuck Street, 02115, Boston, MA, USA; Department of Medicine, Division of Genetics, Brigham and Women's Hospital, 77 Avenue Louis Pasteur, NRB Rm. 250, 02115, Boston, MA, USA; Broad Institute, 415 Main Street, 02142, Cambridge, MA, USA. Electronic address: rcgreen@bwh.harvard.edu.
⁹ Department of Medicine, Division of Rheumatology, Immunology and Allergy, Brigham and Women's Hospital, 60 Fenwood Road, 02115, Boston, MA, USA. Electronic address: ntriedman@wesleyan.edu.
¹⁰ Department of Medicine, Division of Rheumatology, Immunology and Allergy, Brigham and Women's Hospital, 60 Fenwood Road, 02115, Boston, MA, USA; Harvard Medical School, 25 Shattuck Street, 02115, Boston, MA, USA. Electronic address: blu1@bwh.harvard.edu.
¹¹ Division of Rheumatology, University of Colorado School of Medicine, 1635 Aurora Court, 80045, Aurora, CO, USA. Electronic address: Kevin.Deane@ucdenver.edu.
¹² Department of Medicine, Division of Rheumatology, Immunology and Allergy, Brigham and Women's Hospital, 60 Fenwood Road, 02115, Boston, MA, USA; Harvard Medical School, 25 Shattuck Street, 02115, Boston, MA, USA; Department of Physical Therapy, Movement and Rehabilitation Sciences, Northeastern University, 301 Robinson Hall, 360 Huntington Avenue, 02115, Boston, MA, USA; Department of Women's and Children's Health, Karolinska Institutet, SE-177 77 Stockholm, Sweden. Electronic address: m.iversen@northeastern.edu.
¹³ Department of Medicine, Division of Rheumatology, Immunology and Allergy, Brigham and Women's Hospital, 60 Fenwood Road, 02115, Boston, MA, USA; Harvard Medical School, 25 Shattuck Street, 02115, Boston, MA, USA. Electronic address: ekarlson@bwh.harvard.edu.
¹⁴ Department of Medicine, Division of Rheumatology, Immunology and Allergy, Brigham and Women's Hospital, 60 Fenwood Road, 02115, Boston, MA, USA; Harvard Medical School, 25 Shattuck Street, 02115, Boston, MA, USA. Electronic address: jsparks@bwh.harvard.edu.

Abstract

Objective: To investigate the effect of providing comprehensive personalized risk information on concern for chronic disease development.

Methods: Unaffected first-degree relatives (FDRs) of rheumatoid arthritis (RA) patients (n = 238) were randomly allocated to: 1) disclosure of RA risk personalized to demographics, genetics, biomarkers, and behaviors using a web-based tool (PRE-RA arm, n = 78); 2) PRE-RA with interpretation by a health educator (PRE-RA Plus arm, n = 80); and 3) standard RA education (Comparison arm, n = 80). Concern for developing RA was assessed at baseline and immediately, 6 weeks, 6 months, and 12 months post-intervention.

Results: FDRs randomized to PRE-RA arms were less concerned about developing RA than the Comparison arm at all post-intervention assessments (p < 0.05). Among those concerned about RA risk at baseline, the PRE-RA (OR = 4.7, 95%CI 1.5-14.4) and PRE-RA Plus (OR = 5.2, 95%CI 1.6-17.3) arms were more likely to have reassurance 6 months post-intervention than the Comparison arm.

Conclusion: A comprehensive tool provided reassurance to those at risk for developing a chronic disease, with or without interpretation from a health educator, compared to standard education.

Practice implications: Individuals may be more likely to be reassured using a personalized chronic disease risk disclosure tool than a standard non-personalized approach.

Keywords: Concern; Genetics; Personalized medicine; Prevention; Rheumatoid arthritis.

Publication types

Randomized Controlled Trial
Research Support, N.I.H., Extramural
Research Support, Non-U.S. Gov't

MeSH terms

Adult
Aged
Arthritis, Rheumatoid / genetics*
Biomarkers
Communication
Female
Genetic Predisposition to Disease
Health Behavior*
Health Education
Health Knowledge, Attitudes, Practice*
Humans
Male
Middle Aged
Outcome Assessment, Health Care
Patient Education as Topic / methods*
Precision Medicine*
Risk Assessment
Risk Factors

Substances

Biomarkers

Abstract

Publication types

MeSH terms

Substances

Grants and funding