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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)