Re-conceptualizing functional status through experiences of young adults with inflammatory arthritis

  • Kristine CarandangEmail author
  • Cheryl L. P. Vigen
  • Elizabeth Ortiz
  • Elizabeth A. Pyatak
Observational Research


The objective of this study is to assess the impact of inflammatory arthritis on young adults’ activity participation using quantitative and qualitative methods to advance the field’s conceptualization of functional status. Young adults diagnosed with juvenile idiopathic arthritis or rheumatoid arthritis completed (1) the Health Assessment Questionnaire-Disability Index to determine functional status and (2) the day reconstruction method to explore experiential dimensions of function, including functional performance, functional satisfaction, and severity of arthritis symptoms during activities on the previous day. Bivariate analyses were conducted to examine relationships between functional status, experiential variables, and demographic variables. Open-ended questions were provided for participants to report ways that arthritis affected their participation that were not otherwise reflected within survey questions; responses were numerically coded using summative content analysis. Among 37 participants (24.8 ± 3.3 years old), 70% reported moderate-to-severe disability. On average, participants experienced pain, stiffness, or fatigue for more than 50% of their waking hours. Functional status significantly correlated with functional performance (r = − 0.39, p = 0.02) and satisfaction (r = − 0.39, p = 0.02), yet did not correlate with stiffness or fatigue severity or duration of symptoms throughout the day. Participants described strategies that improved their ability to participate in certain activities but reduced their overall quality of activity engagement and caused emotional distress. Young adults with arthritis may experience more significant functional limitations than previously reported. Traditional measures of functional assessment may not capture experiential components of activity that affect participation, such as severity of stiffness or fatigue or the duration of symptoms throughout the day.


Health status Quality of life Juvenile idiopathic arthritis Rheumatoid arthritis Young adult Patient reported outcome 



We would like to thank Courtney Wells, Jennifer Ziegler, Jennifer Horonjeff, Elizabeth Morasso, and Megan Bent for their valuable input on the methodology and interpretation of this data. This paper was written in partial fulfillment of the first author’s requirements for a doctoral degree in occupational science at the University of Southern California, Los Angeles, California, USA.

Author contributions

KC devised the project and main conceptual ideas, wrote the first draft of the manuscript, and edited and approved the manuscript. CLPV contributed to the methods, performed statistical analysis, and edited and approved the manuscript. EO contributed to the recruitment and execution of the methods and edited and approved the manuscript. EAP provided mentorship to KC from the project’s conception through completion and edited and approved the manuscript.

Compliance with ethical standards

This study involved human participants, who all verbalized informed consent. Participants were assigned a unique ID number to anonymize data upon data collection. This study was completed in accordance with procedures approved by the University of Southern California Institutional Review Board (Project # HS-16-00514, approved on 8/13/2017).

Conflict of interest

The authors do not have any potential conflicts of interest.


  1. 1.
    Hazel E, Zhang X, Duffy CM, Campillo S (2010) High rates of unsuccessful transfer to adult care among young adults with juvenile idiopathic arthritis. Pediatr Rheumatol 8:2CrossRefGoogle Scholar
  2. 2.
    Foster HE, Marshall N, Myers A, Dunkley P, Griffiths ID (2003) Outcome in adults with juvenile idiopathic arthritis: a quality of life study. Arthritis Rheum 48:767–775CrossRefGoogle Scholar
  3. 3.
    Packham JC, Hall MA (2002) Long-term follow-up of 246 adults with juvenile idiopathic arthritis: functional outcome. Rheumatology 41:1428–1435CrossRefGoogle Scholar
  4. 4.
    Packham JC, Hall MA, Pimm TJ (2002) Long-term follow-up of 246 adults with juvenile idiopathic arthritis: predictive factors for mood and pain. Rheumatology 41:1444–1449CrossRefGoogle Scholar
  5. 5.
    Zak M, Pedersen FK (2000) Juvenile chronic arthritis into adulthood: a long-term follow-up study. Rheumatology 39:198–204CrossRefGoogle Scholar
  6. 6.
    Elhai M, Bazeli R, Freire V, Feydy A, Drapé JL, Quartier P et al (2013) Radiological peripheral involvement in a cohort of patients with polyarticular juvenile idiopathic arthritis at adulthood. J Rheumatol 40:520–527CrossRefGoogle Scholar
  7. 7.
    Minden K (2009) Adult outcomes of patients with juvenile idiopathic arthritis. Horm Res 72:20–25CrossRefGoogle Scholar
  8. 8.
    Scal P, Horvath K, Garwick A (2009) Preparing for adulthood: health care transition counseling for youth with arthritis. Arthritis Rheum 61:52–57CrossRefGoogle Scholar
  9. 9.
    Wells CK, McMorris BJ, Horvath KJ, Garwick AW, Scal PB (2012) Youth report of healthcare transition counseling and autonomy support from their rheumatologist. Pediatr Rheumatol 10:36CrossRefGoogle Scholar
  10. 10.
    Squire R (2012) Living well with rheumatoid arthritis. Musculoskelet Care 10:127–134CrossRefGoogle Scholar
  11. 11.
    Cieza A, Stucki G (2005) Understanding functioning, disability, and health in rheumatoid arthritis: the basis for rehabilitation care. Curr Opin Rheumatol 17:183–189CrossRefGoogle Scholar
  12. 12.
    Stamm TA, Cieza A, Coenen M, Machold KP, Nell VPK, Smolen JS et al (2005) Validating the International Classification of Functioning, Disability and Health Comprehensive Core Set for Rheumatoid Arthritis from the patient perspective: a qualitative study. Arthritis Rheum 53:431–439CrossRefGoogle Scholar
  13. 13.
    MacKinnon JR, Miller WC (2003) Rheumatoid arthritis and self-esteem: the impact of quality occupation. J Occup Sci 10:90–98CrossRefGoogle Scholar
  14. 14.
    MacKinnon JR, Noh S, Miller WC (1998) Occupation as a mediator of depression in people with rheumatoid arthritis. J Occup Sci 5:82–92CrossRefGoogle Scholar
  15. 15.
    Stewart AL, Greenfield S, Hays RD, Wells K, Rogers WH, Berry SD et al (1989) Functional status and well-being of patients with chronic conditions. Results from the Medical Outcomes Study. JAMA 262:907–913CrossRefGoogle Scholar
  16. 16.
    Rebane K, Ristolainen L, Relas H, Orenius T, Kautianien H, Luosujarvi R et al (2019) Disability and health-related quality of life are associated with restricted social participation in young adults with juvenile idiopathic arthritis. Scand J Rheumatol 48(2):105–113CrossRefGoogle Scholar
  17. 17.
    Secor-Turner M, Scal P, Garwick A, Horvath K, Wells CK (2011) Living with juvenile arthritis: adolescents’ challenges and experiences. J Pediatr Health Care 25:302–307CrossRefGoogle Scholar
  18. 18.
    Östlie IL, Johansson I, Möller A (2009) Struggle and adjustment to an insecure everyday life and an unpredictable life course. Living with juvenile idiopathic arthritis from childhood to adult life—an interview study. Disabil Rehabil 31:666–674CrossRefGoogle Scholar
  19. 19.
    Jetha A, Theis KA, Boring MA, Barbour KE (2017) Education and employment participation in young adulthood: what role does arthritis play? Arthritis Care Res 69:1582–1589CrossRefGoogle Scholar
  20. 20.
    Jetha A (2015) The impact of arthritis on the early employment experiences of young adults: a literature review. Disabil Health J 8:317–324CrossRefGoogle Scholar
  21. 21.
    Haverman L, Verhoof EJ, Maurice-Stam H, Heymans HS, Gerlag DM, van Rossum MA et al (2012) Health-related quality of life and psychosocial developmental trajectory in young female beneficiaries with JIA. Rheumatology 51:368–374CrossRefGoogle Scholar
  22. 22.
    Jetha A, Badley E, Beaton D, Fortin PR, Shiff NJ, Gignac MA (2015) Unpacking early work experiences of young adults with rheumatic disease: an examination of absenteeism, job disruptions, and productivity loss. Arthritis Care Res 67:1246–1254CrossRefGoogle Scholar
  23. 23.
    Fries JF, Spitz P, Kraines RG, Holman HR (1980) Measurement of patient outcome in arthritis. Arthritis Rheum 23:137–145CrossRefGoogle Scholar
  24. 24.
    Bruce B, Fries JF (2003) The Stanford Health Assessment Questionnaire: a review of its history, issues, progress, and documentation. J Rheumatol 30:167–178Google Scholar
  25. 25.
    Bruce B, Fries JF (2003) The Stanford Health Assessment Questionnaire: dimensions and practical applications. Health Qual Life Outcomes 1:1CrossRefGoogle Scholar
  26. 26.
    Bruce B, Fries JF (2005) The Health Assessment Questionnaire (HAQ). Clin Exp Rheumatol 23:S14–S18Google Scholar
  27. 27.
    Kahneman D, Krueger AB, Schkade DA, Schwarz N, Stone AA (2004) A survey method for characterizing daily life experience: the day reconstruction method. Science 306:1776–1780CrossRefGoogle Scholar
  28. 28.
    Kahneman D, Krueger AB, Schkade DA, Schwarz N, Stone AA (2004) The day reconstruction method (DRM): instrument documentation.
  29. 29.
    Law M, Baptiste S, McColl M, Opzoomer A, Polatajko H, Pollock N (1990) The Canadian Occupational Performance Measure: an outcome measure for occupational therapy. Can J Occup Ther 57:82–87CrossRefGoogle Scholar
  30. 30.
    Carswell A, McColl MA, Baptiste S, Law M, Polatajko H, Pollock N (2004) The Canadian Occupational Performance Measure: a research and clinical literature review. Can J Occup Ther 71:210–222CrossRefGoogle Scholar
  31. 31.
    American Occupational Therapy Association (2017) Occupational therapy practice framework: domain and process (3rd edition). Am J Occup Ther 68:1CrossRefGoogle Scholar
  32. 32.
    Ostlie IL, Aasland A, Johansson I, Flatö B, Möller A (2009) A longitudinal follow-up study of physical and psychosocial health in young adults with chronic childhood arthritis. Clin Exp Rheumatol 27:1039–1046Google Scholar
  33. 33.
    Wolfe F (2001) Which HAQ is best? A comparison of the HAQ, MHAQ and RA-HAQ, a difficult 8 item HAQ (DHAQ), and a rescored 20 item HAQ (HAQ20): analyses in 2,491 rheumatoid arthritis patients following leflunomide initiation. J Rheumatol 28:982–989Google Scholar
  34. 34.
    Seror R, Tubach F, Baron G, Guillemin F, Ravaud P (2010) Measure of function in rheumatoid arthritis: individualised or classical scales? Ann Rheum Dis 69:97–101CrossRefGoogle Scholar
  35. 35.
    Stucki G, Cieza A (2004) The International Classification of Functioning, Disability and Health (ICF) Core Sets for rheumatoid arthritis: a way to specific functioning. Ann Rheum Dis 63(suppl 2):ii40–ii45Google Scholar
  36. 36.
    Badley EM (2008) Enhancing the conceptual clarity of the activity and participation components of the International Classification of Functioning, Disability, and Health. Soc Sci Med 66:2335–2345CrossRefGoogle Scholar
  37. 37.
    Cardol M, de Jong BA, van den Bos GA, Beelem A, de Groot IJ, de Haan R (2002) Beyond disability: perceived participation in people with a chronic disabling condition. Clin Rehabil 16:27–35CrossRefGoogle Scholar
  38. 38.
    Hammel J, Magasi S, Heinemann A, Whiteneck G, Bogner J, Rodriguez E (2008) What does participation mean? An insider perspective from people with disabilities. Disabil Rehabil 30:1445–1460CrossRefGoogle Scholar
  39. 39.
    Östlund G, Björk M, Thyberg I, Thyberg M, Valtersson E, Stenström B, Sverker A (2014) Emotions related to participation restrictions as experienced by patients with early rheumatoid arthritis: a qualitative interview study (the Swedish TIRA project). Clin Rehabil 33(10):1403–1413Google Scholar
  40. 40.
    Sverker A, Thyberg I, Östlund G, Waltersson E, Thyberg M (2014) Participation in work in early rheumatoid arthritis: a qualitative interview study interpreted in terms of the ICF. Disabil Rehabil 36(3):242–249CrossRefGoogle Scholar
  41. 41.
    Sverker A, Östlund G, Thyberg M, Thyberg I, Valtersson E, Björk M (2015) Dilemmas of participation in everyday life in early rheumatoid arthritis: a qualitative interview study (The Swedish TIRA Project). Disabil Rehabil 37(14):1251–1259CrossRefGoogle Scholar
  42. 42.
    Rebene K, Orenius T, Ristolainen L, Relas H, Kautianen H, Lusojarvi R (2019) Pain interference and associated factors in young adults with juvenile idiopathic arthritis. Scand J Rheumatol. Google Scholar
  43. 43.
    Stucki G, Cieza A, Geyh S, Battistella L, Lloyd J, Symmonds D, Kostanjsek N, Schouten J (2004) ICF Core Sets for rheumatoid arthritis. J Rehabil Med 44(Suppl):87–93CrossRefGoogle Scholar
  44. 44.
    Gebhardt C, Kirchberger I, Stucki G, Cleza A (2010) Validation of the comprehensive ICF Core Set for rheumatoid arthritis: the perspective of physicians. J Rehabil Med 42(8):780–788CrossRefGoogle Scholar
  45. 45.
    Amris K, Kristensen LE, Wæhrens EE (2016) SAT0619 Relationship between HAQ disability scores and measures of observed functional ability in patents with rheumatoid arthritis, ostearthritis and fibromyalgia and the association to pain and fatigue. Ann Rheum Dis 75:894Google Scholar
  46. 46.
    Manners PJ, Bower C (2002) Worldwide prevalence of juvenile arthritis why does it vary so much? Rheumatology 29(7):1520–1530Google Scholar
  47. 47.
    Iikuni N, Nakajima A, Inoue E, Tanaka E, Okamoto H, Hara M et al (2007) What’s in season for rheumatoid arthritis patients? Seasonal fluctuations in disease activity. Rheumatology 46:846–848CrossRefGoogle Scholar
  48. 48.
    Flurey CA, Morris M, Richards P, Hughes R, Hewlett S (2014) It’s like a juggling act: rheumatoid arthritis patient perspectives on daily life and flare while on current treatment regimes. Rheumatology 53:696–703CrossRefGoogle Scholar

Copyright information

© Springer-Verlag GmbH Germany, part of Springer Nature 2019

Authors and Affiliations

  1. 1.Mrs. T. H. Chan Division of Occupational Science and Occupational TherapyUniversity of Southern CaliforniaLos AngelesUSA
  2. 2.Division of Rheumatology, Keck School of MedicineUniversity of Southern CaliforniaLos AngelesUSA

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