PMID- 30907294
OWN - NLM
STAT- MEDLINE
DCOM- 20191129
LR  - 20240131
IS  - 1477-0962 (Electronic)
IS  - 0961-2033 (Print)
IS  - 0961-2033 (Linking)
VI  - 28
IP  - 5
DP  - 2019 Apr
TI  - Self-management and adherence in childhood-onset systemic lupus erythematosus: 
      what are we missing?
PG  - 642-650
LID - 10.1177/0961203319839478 [doi]
AB  - OBJECTIVES: The aims of this study are (1) to characterize factors influencing 
      self-management behaviors and quality of life in adolescent and young adult (AYA) 
      patients with childhood-onset systemic lupus erythematosus (cSLE) and (2) to 
      identify barriers and facilitators of treatment adherence via focus groups. 
      METHODS: AYAs with cSLE ages 12-24 years and primary caregivers of the 
      adolescents participated in this study. Recruitment occurred during pediatric 
      rheumatology clinic visits at a Midwestern children's hospital or the hospital's 
      cSLE active clinic registry. Information about disease severity was obtained from 
      patient health records. Pain and fatigue questionnaires were administered. 
      Descriptive statistics were used to analyze data. RESULTS: Thirty-one AYA 
      patients and caregivers participated in six focus groups. Ten major themes 
      emerged from sessions; four were expressed both by the AYA and caregiver groups: 
      knowledge deficits about cSLE, symptoms limiting daily function, specifically 
      mood and cognition/learning, barriers and facilitators of adherence, and worry 
      about the future. Themes unique to AYA participants included symptoms limiting 
      daily functioning-pain/fatigue, self-care and management, impact on personal 
      relationships, and health care provider communication/relationship. For caregiver 
      groups unique themes included need for school advocacy, disruption of family 
      schedule, and sense of normalcy for their adolescent. CONCLUSION: AYAs with cSLE 
      face a lifelong disease characterized by pervasive pain, fatigue, organ damage, 
      isolation-social and/or physical-and psycho-socioeducational challenges. This 
      study confirmed that continued psychosocial support, health information 
      education, adherence interventions, and personalized treatment plans are 
      necessary to increase self-management and autonomy in AYAs with cSLE.
FAU - Harry, O
AU  - Harry O
AUID- ORCID: 0000-0002-6810-7352
AD  - 1 Division of Rheumatology, Cincinnati Children's Hospital Medical Center, 
      Cincinnati, OH, USA.
FAU - Crosby, L E
AU  - Crosby LE
AD  - 2 Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's 
      Hospital Medical Center, Cincinnati, OH, USA.
AD  - 3 College of Medicine, University of Cincinnati, Cincinnati, OH, USA.
FAU - Smith, A W
AU  - Smith AW
AD  - 2 Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's 
      Hospital Medical Center, Cincinnati, OH, USA.
FAU - Favier, L
AU  - Favier L
AD  - 1 Division of Rheumatology, Cincinnati Children's Hospital Medical Center, 
      Cincinnati, OH, USA.
FAU - Aljaberi, N
AU  - Aljaberi N
AD  - 1 Division of Rheumatology, Cincinnati Children's Hospital Medical Center, 
      Cincinnati, OH, USA.
FAU - Ting, T V
AU  - Ting TV
AD  - 1 Division of Rheumatology, Cincinnati Children's Hospital Medical Center, 
      Cincinnati, OH, USA.
AD  - 3 College of Medicine, University of Cincinnati, Cincinnati, OH, USA.
FAU - Huggins, J L
AU  - Huggins JL
AD  - 1 Division of Rheumatology, Cincinnati Children's Hospital Medical Center, 
      Cincinnati, OH, USA.
AD  - 3 College of Medicine, University of Cincinnati, Cincinnati, OH, USA.
FAU - Modi, A C
AU  - Modi AC
AD  - 2 Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's 
      Hospital Medical Center, Cincinnati, OH, USA.
AD  - 3 College of Medicine, University of Cincinnati, Cincinnati, OH, USA.
LA  - eng
GR  - K07 CA200668/CA/NCI NIH HHS/United States
GR  - T32 HD068223/HD/NICHD NIH HHS/United States
PT  - Journal Article
DEP - 20190324
PL  - England
TA  - Lupus
JT  - Lupus
JID - 9204265
SB  - IM
MH  - Adolescent
MH  - Age of Onset
MH  - Caregivers/*psychology
MH  - Child
MH  - Female
MH  - Focus Groups
MH  - Humans
MH  - Interviews as Topic
MH  - Lupus Erythematosus, Systemic/*physiopathology/*psychology/therapy
MH  - Male
MH  - Ohio
MH  - Patient Compliance
MH  - Quality of Life
MH  - Registries
MH  - *Self-Management
MH  - Surveys and Questionnaires
MH  - Young Adult
PMC - PMC6506349
MID - NIHMS1523194
OTO - NOTNLM
OT  - Adherence
OT  - childhood-onset SLE
OT  - renal lupus
OT  - self-management
OT  - systemic lupus erythematosus
COIS- DECLARATION OF CONFLICTING INTERESTS The author(s) declared no potential 
      conflicts of interest with respect to the research, authorship, and/or 
      publication of this article
EDAT- 2019/03/26 06:00
MHDA- 2019/11/30 06:00
PMCR- 2020/04/01
CRDT- 2019/03/26 06:00
PHST- 2019/03/26 06:00 [pubmed]
PHST- 2019/11/30 06:00 [medline]
PHST- 2019/03/26 06:00 [entrez]
PHST- 2020/04/01 00:00 [pmc-release]
AID - 10.1177/0961203319839478 [doi]
PST - ppublish
SO  - Lupus. 2019 Apr;28(5):642-650. doi: 10.1177/0961203319839478. Epub 2019 Mar 24.