Barriers to Care in Juvenile Localized and Systemic Scleroderma: An Exploratory Survey Study of Caregivers’ Perspectives

Author:

Stubbs Leigh Anna1ORCID,Ferry Andrew2,Guffey Danielle2,Loccke Christina3,Wade Erin Moriarty3,Pour Pamela3,Ardalan Kaveh4,Chira Peter5,Ganske Ingrid M.6,Glaser Daniel7,Higgins Gloria C8,Luca Nadia9,Moore Katharine F10,Sivaraman Vidya11,Stewart Katie12,Vasquez-Canizares Natalia13,Hunt Raegan D.2,Maricevich Renata S.2,Torok Kathryn S.14,Li Suzanne C.15ORCID

Affiliation:

1. Baylor College of Medicine Department of Pediatrics

2. Baylor College of Medicine

3. n/a

4. Duke University

5. University of California San Diego

6. Boston Children's Hospital

7. Yale University

8. The Ohio State University College of Medicine

9. University of Calgary

10. Children's Hospital Colorado

11. Nationwide Children's Hospital

12. UT Southwestern: The University of Texas Southwestern Medical Center

13. Children's Hospital at Montefiore

14. Children's Hospital of Pittsburgh of University of Pittsburgh Medical Center: Children's Hospital of Pittsburgh of UPMC

15. Hackensack Meridian Hackensack University Medical Center

Abstract

AbstractBackground:Juvenile localized scleroderma (LS) and systemic sclerosis (SSc) are rare pediatric conditions often associated with severe morbidities. Delays in diagnosis are common, increasing the risk for permanent damage and worse outcomes. This study explored caregiver perspectives on barriers they encountered while navigating diagnosis and care for their child’s scleroderma.Methods:In this cross-sectional study,caregivers of juvenile LS or SSc patients were recruited from a virtual family scleroderma educational conference and a juvenile scleroderma online interest group. The survey queried respondents about their child’s condition and factors affecting diagnosis and treatment.Results:The response rate was 61% (73/120), with 38 parents of LS patients and 31 parents of SSc patients. Most patients were female (80%) and over half were non-Hispanic white (55%). Most families had at least one person with a college education or higher (87%), traveled<2 hours to see their doctor (83%), and had private insurance (75%). Almost half had an annual household income>$100,000 (46%). Families identified the following factors as barriers to care: lack of knowledge about scleroderma in the medical community, finding reliable information about pediatric scleroderma, long wait times for a rheumatology/specialist appointment, balance of school/work and child’s healthcare needs, medication side effects, and identifying effective medications. The barrier most identified as a major problem was the lack of knowledge about juvenile scleroderma in the medical community. Diagnosis and systemic treatment initiation occurred at greater than one year from initial presentation for approximately 28% and 36% of patients, respectively.Conclusion:Caregivers of children with LS or SSc reported numerous common barriers to the diagnosis, treatment, and ongoing care of juvenile scleroderma. The major problem highlighted was the lack of knowledge of scleroderma within the general medical community. Given that most of the caregiver respondents to the survey had relatively high socioeconomic status, additional studies are needed to reach a broader audience, including caregivers with limited English proficiency, geographical limitations, and financial constraints, to determine if the identified problems are generalizable. Identifying key care barriers will help direct efforts to address needs, reduce disparities in care, and improve patient outcomes.

Publisher

Research Square Platform LLC

Reference27 articles.

1. Exploring the impact of paediatric localized scleroderma on health-related quality of life: focus groups with youth and caregivers;Zigler CK;Br J Dermatol,2020

2. Baseline Description of the Juvenile Localized Scleroderma Subgroup From the Childhood Arthritis and Rheumatology Research Alliance Legacy Registry;Wu EY;ACR Open Rheumatol,2019

3. Pediatric scleroderma: systemic or localized forms;Torok KS;Pediatr Clin North Am,2012

4. Disease course and long-term outcome of juvenile localized scleroderma: Experience from a single pediatric rheumatology Centre and literature review;Martini G;Autoimmun Rev,2018

5. Li SC, O'Neil KM, Higgins GC. Morbidity and Disability in Juvenile Localized Scleroderma: The Case for Early Recognition and Systemic Immunosuppressive Treatment.J Pediatr. 2021;234:245 – 56.e2.

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