title: The illness experience of youth with lupus/mixed connective tissue disease: a mixed methods analysis of patient and parent perspectives.
abstract: OBJECTIVE
  We aimed to develop a model of the illness experience for youth with systemic lupus erythematosus (SLE)/mixed connective tissue disease (MCTD).
  
  
  METHODS
  We conducted 32 semi-structured interviews with 16 outpatient youth with SLE/MCTD, age 11 to 22 years, and their parents. We qualitatively defined key features of illness for families and distinguished profiles of youth adapting well vs poorly to SLE/MCTD. We then related these profiles to features of illness, patient-level attributes and outcomes.
  
  
  RESULTS
  Experiences with SLE/MCTD grouped into five themes: managing disease, limitations, stigma, illness uncertainty and psychological coping. Youth adapting well experienced minimal challenges in these areas. Youth adapting poorly (4/16) experienced significant challenges in >1 thematic area, and were older with lower socioeconomic status, quality of life and psychosocial functioning, and increased disease-related morbidity. They also described suboptimal treatment adherence, healthcare utilization and transition to adult care. These findings support a dynamic model in which illness adaptation and outcomes are shaped by patient characteristics and five central illness-related challenges.
  
  
  CONCLUSIONS
  Further testing of our model of illness experience may help guide comprehensive and personalized care of youth with SLE/MCTD, with targeted supports for youth at risk for negative adaptation to illness and poor outcomes.
authors.affiliation: Division of Rheumatology, Children's Hospital of Philadelphia, Philadelphia, USA Center for Pediatric Clinical Effectiveness, Children's Hospital of Philadelphia, Philadelphia, USA PolicyLab, Children's Hospital of Philadelphia, Philadelphia, USA knightan@email.chop.edu.
authors.forename: A
authors.initials: A
authors.lastname: Knight
authors.affiliation: Center for Pediatric Clinical Effectiveness, Children's Hospital of Philadelphia, Philadelphia, USA PolicyLab, Children's Hospital of Philadelphia, Philadelphia, USA.
authors.forename: M
authors.initials: M
authors.lastname: Vickery
authors.affiliation: Center for Pediatric Clinical Effectiveness, Children's Hospital of Philadelphia, Philadelphia, USA PolicyLab, Children's Hospital of Philadelphia, Philadelphia, USA Division of General Pediatrics, Children's Hospital of Philadelphia, Philadelphia, USA.
authors.forename: A G
authors.initials: AG
authors.lastname: Fiks
authors.affiliation: Department of Family Medicine and Community Health, University of Pennsylvania, Philadelphia, USA Center for Clinical Epidemiology and Biostatistics, University of Pennsylvania, Philadelphia, USA.
authors.forename: F K
authors.initials: FK
authors.lastname: Barg
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D002648:Child; D015897:Comorbidity; D005260:Female; D006306:Health Surveys; D006801:Humans; D008180:Lupus Erythematosus, Systemic / Q000523:psychology*; D008297:Male; D008947:Mixed Connective Tissue Disease / Q000523:psychology*; D008960:Models, Psychological; D010290:Parents / Q000523:psychology*; D057285:Precision Medicine; D011788:Quality of Life; D012307:Risk Factors; D055815:Young Adult
keywords: Pediatric; adolescent; lupus; mixed connective tissue disease; parent; young adult