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Table 2 Instruments

From: Study protocol: SPARCLE – a multi-centre European study of the relationship of environment to participation and quality of life in children with cerebral palsy

Instrument Reference Captures Domains Type of variable Translations required
Life-H [24] Child's Participation Communication Personal care Around the house Feeding Mobility Fitness Responsibility Recreation Education Community Life Interpersonal relations Dependent. Primary outcome Danish, French, German, Italian, Swedish
Frequency of Participation Questionnaire (FPQ) Being developed within the study Frequency of participation where measurement is meaningful and the participation is discretionary   Dependent. Primary outcome Danish, French, German, Italian, Swedish
Kidscreen [28] Child's Quality of Life Psychological Emotion Social support Home life Self perception Autonomy School Social acceptance Finance Physical well-being Dependent. Primary outcome Danish, Italian Minor adaptations required for professional and proxy versions in all languages
European Child Environment Questionnaire (ECEQ) Being developed within the study Extent to which environment facilitates or hinders participation Physical Social Attitudinal Explanatory Danish, French, German, Italian, Swedish
Strength and Difficulties Questionnaire (SDQ) [29] Child's behaviour Emotional symptoms Conduct problems Hyperactivity Peer problems Prosocial behaviour Explanatory None
Parenting Stress Index Short Form (PSI-SF) [30] Parental stress Parental distress Parent-child dysfunctional interaction Difficult child PSI Life stress scale Explanatory Danish French for Life Stress Scale items only
Child Health Questionnaire (CHQ) [31] General child health Global health Physical functioning Social emotional Social physical Bodily pain Behaviour Global behaviour Mental health Self esteem General health perceptions Change in health Parental impact – emotional Parental impact – time Family activities Family cohesion Primarily included to validate other instruments None
Impairment Descriptive Child's Impairments Type of cerebral palsy Gross motor function Upper limb function Intelligence Hearing Vision Seizures Communication Feeding Explanatory Danish, French, German, Italian, Swedish
Background child and family factors Descriptive   Age Sex School Siblings Partner status Parental academic qualifications Parental employment Parental occupation Explanatory Danish, French, German, Italian, Swedish