A Knight1, M Vickery2, A G Fiks3, F K Barg4. 1. 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. 2. Center for Pediatric Clinical Effectiveness, Children's Hospital of Philadelphia, Philadelphia, USA PolicyLab, Children's Hospital of Philadelphia, Philadelphia, USA. 3. 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. 4. Department of Family Medicine and Community Health, University of Pennsylvania, Philadelphia, USA Center for Clinical Epidemiology and Biostatistics, University of Pennsylvania, Philadelphia, USA.
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. CONCLUSION: 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.
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. CONCLUSION: 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: Andrea Knight; Amy J Kogon; Matthew B Matheson; Bradley A Warady; Susan L Furth; Stephen R Hooper Journal: J Pediatr Date: 2017-07-19 Impact factor: 4.406