Skip to main content

Table 2 Outcomes and measures

From: Evaluation of two family-based intervention programs for children affected by rare disease and their families – research network (CARE-FAM-NET): study protocol for a rater-blinded, randomized, controlled, multicenter trial in a 2x2 factorial design

Outcome Instrument Source Time (months)
   Questionnaire Interview Mother Father Diseased child Sibling Therapist External rater pre 6 12 18
Demographics   Ad-hoc Items   X X      X    
Quality of Life Parents EQ-5D   X X      X X X X
ULQIE   X X      X X X X
SF-12   X X      X X X X
Diseased Child DCGM-37   X X X     X X X X
Sibling Kidscreen-27   X X X X    X X X X
Diagnoses/Psychiatric symptomatology Parents   SCID-I X X     X X X X X
PHQ-D   X X      X X X X
BSI   X X      X X X X
GAF        X X X X X
Children   K-SADS-PL       X X X X X
CGAS        X X X X X
CBCL 1½–5 / CBCL 6-18R / YSR   X X X X    X X X X
Coping Parents CHIP-D   X X      X X X X
Children KidCOPE     X X    X X X X
Social network Social support OSSS   X X X X    X X X X
Family relations GARF        X X X X X
Sibling relationship SRQ      X    X X X X
Partnership satisfaction Parent relationship PFB   X X      X X X X
Body-related disorders (Diseased child) Eating Behavior EDY-Q   X X X     X X X X
Body related eating behavior ChEDE-Q8     X     X X X X
Excretion Disorders Questionnaire on Enuresis and Functional Urinary Incontinence   X X      X X X X
Health economics Intervention costs children   CAMHSRI-DE X X     X X X X X
Intervention costs parents   CSSRI-DE X X     X X X X X
Diagnostics of care and quality of care Previous experience and treatment expectations Ad-hoc Items   X X X X    X X X X
Treatment goals Ad-hoc Items   X X X X X   X X X X
Satisfaction- and treatment assessmenta FBB   X X X X X    X X X
ZUF-8   X X X X     X X X
VPPSa          X   
Ad-hoc Items   X X X X X    X X X
  1. aintervention groups only (CARE-FAM, WEP-CARE)