Table 1.

Generic and disease-specific HRQoL questionnaires for use with children <5 years old.

QUESTIONNAIRE	Generic/Disease-specific instrument	Age group versions	Self or proxy report	Questionnaire dimensions & Items
Pediatric quality of life inventory (PedsQL)	Generic core module and Disease-Specific Modules for asthma, arthritis, cancer, cardiac disease, duchenne muscular dystrophy, cerebral palsy, cognitive function, diabetes, end stage renal disease, eosinophilic esophagitis, epilepsy	2–4 years 5–7 years 8–12 years 13–18 years (5–7 year old survey is interviewer administered; all others are self-administered)	Parent report only ages 2–4. All other ages self and parent report	23 items for generic core scale Physical Functioning, Emotional Functioning, Social Functioning, School Functioning.
Infant Toddler Quality of Life questionnaire (ITQOL)	Generic	2 months-5 years	Parent report	43 items. Physical functioning, Growth and development, Bodily pain, General Temperament /moods, General behaviour, Getting along, General health, Parental-emotional, Parental-time, Family activities, Family cohesion, Change in health
Warwick Child Health and Morbidity profile (WCHMP)	Generic	0–5 years	Parent report	16 items. General health status, acute minor illness status, behavioural status, accident status, acute significant illness status, immunization status, chronic illness status, functional health status, health related quality of life
Functional status II (R)	Generic	0–9 months 10 months – 2 years 2–5 years 5–11 years	Parent report	43 items. All age groups include total functional status and general health status factor. Stage-specific factors included in long form by age group are as follows: 0–2 Years: Responsiveness 2–3 Years: Activity 4 Years and Older: Interpersonal Functioning
TNO-AZL Preschool Children Quality of Life questionnaire (TAPQOL)	Generic	1–4 years	Parent report	43 items. Physical, social, cognitive, and emotional functioning
Nordic Quality of Life questionnaire for children	Generic	2–6 years 7–12 years 13–17 years	Parent report from age 2 and self-report from age 12	74 items. Global, external, interpersonal, and personal: objective and subjective. Included within these spheres are the following dimensions: physical, mental, spiritual, social, and economic
DISABKIDS	Generic core module for chronic diseases	4–7 years 4–16 years	Self-report with help from interviewer/nurse or parent and proxy report	12/37 items. Mental, social, and physical subscales
KINDL (KiddyKINDL, KidKINDL, KiddoKINDL)	Generic core module and extension for extended hospitalisation. Disease-specific modules for Adiposity, Asthma, Diabetes, Epilepsy, Neurodermatitis, Oncology, Spina bifida,	KiddyKINDL age 4–6 self KiddyKINDL age 3–6 parents KIdKINDL age 7–13 self Kid_KiddoKINDL age 7–17 parents KiddoKINDL 14–17 self	Parent and self-report	12/24 items. Physical, Emotional, Self-esteem, family, friends, school
Behavioural, Affective and Somatic experiences scale (BASES)	Bone marrow transplant	<1 year – 20 years	Parent, nurse and self-report	38 items. Somatic Distress, Compliance, Mood/Behaviour, Interactions, Activity, and a group of miscellaneous items that were subsequently labelled Requests (6 items).
The Pediatric Oncology Quality of life Scale (POQOLS)	Cancer	0–18 years	Parent report	21 items. Physical function and role restriction, emotional distress, and reaction to current medical treatment
The Miami Pediatric Quality of life Questionnaire	Cancer	1–18 years	Parent report	56 items. Self-Competence, Emotional Stability and Social Competence
Juvenile Arthritis Quality of Life Questionnaire (JAQQ)	Juvenile arthritis	2–8 years 9 − 18 years	Parent and self-report	74 items. gross motor function, fine motor function, psychosocial function, and general symptoms
Quality of Life for Children with Otitis Media (OM-6)	Otitis media	6 months – 12 years	Parent report	6 items. Physical suffering, hearing loss, speech impairment, emotional distress, activity limitations, and caregiver concerns
Haemophilia Quality of Life Questionnaire (Haemo-QoL)	Haemophilia	4–7 years 8–12 years 13–16 years	Parent and self-report	Long version 21–77 items according to age range. Short version 8 items. Physical health, feeling, attitude, family, friends, other persons, sport and school, coping, treatment, future
Cystic Fibrosis questionnaire Revised	Cystic fibrosis	3–6 years (currently being validated) 6–11 years 12–13 years 14+ years	Self-report proxy-report. Interview administered for young children	35–50 according to age range. Physical, role/school, vitality, emotion, social, body image, eating, treatment burden, health perceptions. 3 symptom scales: Weight, respiratory, and digestion