Skip to content
How It Works
Explore
Resources Ask a Question
Who It's For
Patients
Decode results, prep for appointments, weigh options.
Caregivers & advocates
Carry the research load for someone you love.
Providers & clinicians
Resources for patients in your practice.
Log In Ask a Question
PubMed This is a summary of 17 peer-reviewed journal articles Updated
Enthesitis-Related Arthritis

Growing Up with ERA: The Long-Term Outlook and Transition to Adult Care

At a Glance

Enthesitis-Related Arthritis (ERA) is a long-term condition that often evolves into adult spondyloarthritis. Transitioning to adult care is a multi-year process that teaches teens to manage their health independently, helping ensure a high quality of life with modern biologic treatments.

As your child grows, their diagnosis and care will grow with them. While the goal is always remission, it is important to understand that for many, Enthesitis-Related Arthritis (ERA) is a long-term journey. With modern treatments, however, the “long term” looks much brighter than it did just a decade ago [1][2].

The Evolution of a Diagnosis

ERA is often considered the pediatric version of adult spondyloarthritis [3]. As children with ERA reach adulthood (typically between ages 18 and 21), their diagnosis may be renamed by an adult rheumatologist [4]:

  • Axial Spondyloarthritis (axSpA): A broad term for inflammation that primarily affects the spine and sacroiliac joints [3].
  • Ankylosing Spondylitis (AS): A specific form of axSpA where there is visible structural change or “fusing” in the spine on an X-ray [3][5].

Research shows that children who are HLA-B27 positive or who have early signs of sacroiliitis (inflammation of the pelvic joints) are the most likely to see their condition continue into adulthood [6][7]. Approximately half of patients with ERA may continue to have some level of active disease or functional impact as adults [8].

The “Transition” Milestone

“Transitioning” isn’t just a one-day transfer of medical records; it is a multi-year process designed to help your child become an independent advocate for their own health [9].

A successful transition usually includes:

  • Self-Management: Gradually teaching your child to track their own symptoms, name their medications, and know when to call the doctor [10][11].
  • Private Time: Starting around age 14 or 15, doctors may spend part of the appointment talking with the teen alone to build trust and independence [12].
  • Transfer Planning: A formal “graduation” plan that identifies an adult rheumatologist who understands the unique history of pediatric-onset arthritis [9][13].

Outlook and Quality of Life

It is natural to worry about how a chronic condition will affect your child’s future. The good news is that modern biologics (like TNF and IL-17 inhibitors) have revolutionized the long-term outlook [1][2].

Studies of adults with similar conditions show that these treatments significantly improve Health-Related Quality of Life (HRQoL) by reducing pain and preventing the joint damage that used to lead to disability [14][15]. Many young adults with ERA go on to lead full, productive lives—attending university, building careers, and staying active in sports [12].

The Psychological Impact

Moving from “pediatric” to “adult” care is a major life transition that can bring up feelings of anxiety or loss [16]. Children who have been cared for by the same team for years may feel “dropped” when they move to the adult system [16].

As a parent, your role shifts from being the “manager” to being the “consultant” [17]. Encouraging your child to take ownership of their health early on can reduce the stress of this move and ensure they stay on the path to long-term wellness [11].

Common questions in this guide

Will my child's enthesitis-related arthritis continue into adulthood?
Approximately half of patients with ERA may continue to experience active disease into adulthood. Children who are HLA-B27 positive or have early pelvic joint inflammation are the most likely to see their condition continue.
What will my child's ERA be called when they become an adult?
In adulthood, an adult rheumatologist may rename the diagnosis to Axial Spondyloarthritis or Ankylosing Spondylitis. The specific name often depends on whether there are visible structural changes in the spine on an X-ray.
When should we start preparing for the transition to adult rheumatology care?
Transitioning is a multi-year process that typically begins around age 14 or 15. Doctors will start spending private time with your teen to build their independence and help them learn to manage their own medications and symptoms.
Will my child need to stay on biologic therapies forever?
Many patients require long-term treatment to manage symptoms and prevent joint damage. Your adult rheumatologist will regularly monitor the condition and work with you to adjust the long-term plan for biologic therapies as needed.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.At what age will our team start the formal transition process to adult rheumatology?
  2. 2.Given my child's HLA-B27 status, what are the chances this diagnosis will evolve into ankylosing spondylitis?
  3. 3.What are the key milestones my child needs to reach—like managing their own medications—before they 'graduate' to adult care?
  4. 4.How will my child's monitoring (like MRI scans or bloodwork) change once they are in an adult rheumatology clinic?
  5. 5.What is the long-term plan for biologic therapy—will they likely need to stay on these medications indefinitely?

Questions For You

Tap a prompt to share your answer — we'll use it plus this page's context to start a tailored conversation.

References

References (17)
  1. 1

    Capturing the enthesitis related arthritis contemporary profile of Caucasian patients in the era of biologics.

    Deligeorgakis D, Trachana M, Pratsidou-Gertsi P, et al.

    Rheumatology international 2020; (40(6)):941-949 doi:10.1007/s00296-020-04581-w.

    PMID: 32322980
  2. 2

    A case of juvenile-onset ankylosing spondylitis effectively treated with tumour necrosis factor-alpha inhibitor agents.

    Sakaguchi A, Kondo N, Kakutani R, et al.

    Modern rheumatology case reports 2024; (8(2)):259-263 doi:10.1093/mrcr/rxae006.

    PMID: 38343279
  3. 3

    Update on Juvenile Spondyloarthritis.

    Aeder L, Onel KB

    Pediatrics in review 2021; (42(11)):581-589 doi:10.1542/pir.2020-000810.

    PMID: 34725218
  4. 4

    Prevalence of HLA-B27 antigen in patients with juvenile idiopathic arthritis.

    Żuber Z, Turowska-Heydel D, Sobczyk M, Chudek J

    Reumatologia 2015; (53(3)):125-30 doi:10.5114/reum.2015.53133.

    PMID: 27407238
  5. 5

    Spondyloarthritides: Theories and beyond.

    Kocatürk B, Balık Z, Pişiren G, et al.

    Frontiers in pediatrics 2022; (10()):1074239 doi:10.3389/fped.2022.1074239.

    PMID: 36619518
  6. 6

    Enthesitis-related arthritis is the most common category of juvenile idiopathic arthritis in Taiwan and presents persistent active disease.

    Shih YJ, Yang YH, Lin CY, et al.

    Pediatric rheumatology online journal 2019; (17(1)):58 doi:10.1186/s12969-019-0363-0.

    PMID: 31443722
  7. 7

    Clinical correlates of HLA-B*27 and its subtypes in enthesitis-related arthritis variant of juvenile idiopathic arthritis in south Indian Tamil patients.

    Kavadichanda CG, Seth G, Kumar G, et al.

    International journal of rheumatic diseases 2019; (22(7)):1289-1296 doi:10.1111/1756-185X.13551.

    PMID: 30884197
  8. 8

    Predictors of long-term functional outcomes of juvenile idiopathic arthritis-enthesitis-related arthritis: a single centre experience.

    Ravichandran N, Guleria S, Mohindra N, Aggarwal A

    Rheumatology (Oxford, England) 2023; (62(9)):3110-3116 doi:10.1093/rheumatology/kead032.

    PMID: 36702467
  9. 9

    Pediatric to adult rheumatology transition: Success rates, influencing factors, and evolving diagnoses and treatments.

    Demirci Yıldırım T, İşgüder R, Karaçura E, et al.

    Archives of rheumatology 2024; (39(4)):662-669 doi:10.46497/ArchRheumatol.2024.10749.

    PMID: 40060127
  10. 10

    Acceptability of an Adolescent Self-Management Program for Juvenile Idiopathic Arthritis.

    Chomistek K, Barnabe C, Naqvi SF, et al.

    ACR open rheumatology 2022; (4(2)):142-151 doi:10.1002/acr2.11373.

    PMID: 34791829
  11. 11

    The readiness of pediatric rheumatology patients and their parents to transition to adult-oriented treatment.

    Sönmez HE, Koç R, Karadağ ŞG, Aktay Ayaz N

    International journal of rheumatic diseases 2021; (24(3)):397-401 doi:10.1111/1756-185X.14050.

    PMID: 33452739
  12. 12

    Patient-Reported Outcomes Among Transition-Age Young Adults With Juvenile Idiopathic Arthritis in the Childhood Arthritis and Rheumatology Research Alliance Registry.

    Smitherman EA, Chahine RA, Bitencourt N, et al.

    The Journal of rheumatology 2023; (50(1)):98-106 doi:10.3899/jrheum.220514.

    PMID: 36109074
  13. 13

    Transition of Patients with Childhood-onset Rheumatic Diseases to Adult Medical Care in Japan.

    Miyamae T, Bando Y

    Internal medicine (Tokyo, Japan) 2024; (63(1)):25-29 doi:10.2169/internalmedicine.0859-22.

    PMID: 36261384
  14. 14

    Effects of Intravenous Golimumab on Health-Related Quality of Life in Patients with Ankylosing Spondylitis: 28-Week Results of the GO-ALIVE Trial.

    Reveille JD, Deodhar A, Ince A, et al.

    Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research 2020; (23(10)):1281-1285 doi:10.1016/j.jval.2020.04.1837.

    PMID: 33032770
  15. 15

    Retention rate of TNF inhibitors versus IL-17 inhibitors in ankylosing spondylitis patients with prior biologics experience.

    Yang J, Lee BW, Park Y, et al.

    Arthritis research & therapy 2025; (27(1)):135 doi:10.1186/s13075-025-03601-z.

    PMID: 40615873
  16. 16

    Outcome of transition phase patients with juvenile idiopathic arthritis.

    Relas H, Luosujärvi R, Kosola S

    Modern rheumatology 2018; (28(5)):832-837 doi:10.1080/14397595.2017.1416890.

    PMID: 29251024
  17. 17

    Transition readiness in adolescents with juvenile idiopathic arthritis and their parents: Our single-center experience.

    Lazarević D, Đorđević S, Novaković D, et al.

    Archives of rheumatology 2022; (37(3)):411-416 doi:10.46497/ArchRheumatol.2022.9219.

    PMID: 36589608

This page provides educational information about the long-term outlook and transition to adult care for Enthesitis-Related Arthritis. It is not intended to replace professional medical advice, so always consult your rheumatologist regarding your specific care plan.

Get notified when new evidence is published on Enthesitis-related juvenile idiopathic arthritis.

We monitor PubMed for new peer-reviewed studies on this topic and email a short summary when something meaningful changes.