Table 2 Instruments to be used in SPARCLE2

Life-H [64, 65]

Same instrument

Participation

Communication, Personal care, Home life, mealtimes, Mobility, Fitness, Recreation, Responsibility, Education, Community Life, Interpersonal relations

5-20 years

Frequency of participation questionnaire [51]

Modified instrument based on qualitative interviews with adolescent

Frequency of discretionary participation

31 items:

Home life, Getting on with other people, Education, Work and finances, Community and political life, Recreation and leisure, Preparing for the future,

13-20 years

General population data available

KIDSCREEN [54]

Same instrument

Quality of life

Psychological, Emotion, Social support, Home life, Self perception, Autonomy, School, Social acceptance, Finance, Physical well-being

8-18 years

Data available from general population with socio-economic details

Strength and Difficulties Questionnaire (SDQ) [58]

Same instrument

Emotional health and behaviour

Emotional symptoms

Conduct problems

Hyperactivity

Peer problems

Pro-social behaviour

8-16 years. But can be used up to 19 years (Goodman Personal Communication)

General population data available from some countries but socio-economic details not available

Parenting Stress Index Short Form (PSI-SF) [66]

Same instrument

Parental stress

Parental distress

Parent-child dysfunctional interaction

Difficult child

PSI Life stress scale

Data available from general population from all SPARCLE countries but socio-economic details not available

Impairment

Same descriptors

Impairments

Type of cerebral palsy, Gross motor function, Upper limb function, Intelligence, Hearing, Vision, Communication, Feeding Seizures

This is descriptive

Background young person child and family factors

Same descriptors

Age, Sex, School, Siblings, Partner status, Parental educational qualifications, Parental employment status, Parental occupation

This is descriptive

Child Health Questionnaire [67]. Two questions on pain

Same questions

Pain severity and frequency

8-18 years

Additional questions asked about location and cause of pain

Pediatric Pain Questionnaire [68]

Pain location

13-18 years

Dimensions of mastery questionnaire [56]

Motivation and self-efficacy

Total mastery score

14-18 years

Data available from general population but socio-economic details not available

Environmental questionnaire

[35, 44].

Same questions

Availability of environmental factors required to facilitate participation

Physical home, Physical school, Physical community, Transport, Social support home, Social support community, Attitudinal schoolteachers and therapists, Attitudinal classmates

6-18 years