Table 2

Measures for symptomatology and health-related quality of life (HRQOL)

MeasureDomains (Items)ScoringInterpretation
(i) PedsQL
Infant Scales - parent report for infants (ages 1–12 months)56Total (36): 5-point LS.
Physical functioning (6), physical symptoms (10), emotional functioning (12), social functioning (4), cognitive functioning (4).
Items are reverse scored and linearly transformed on a scale from 0 to 100.Higher scores indicate better HRQOL
Infant Scales - parent report for infants (ages 13–24 months)56Total (45): 5-point LS.
Physical functioning (9), physical symptoms (10), emotional functioning (12), social functioning (5), cognitive functioning (9).
Items are reverse scored and linearly transformed on a scale from 0 to 100.Higher scores indicate better HRQOL
3.0 Gastrointestinal symptoms module – parent report for toddlers (ages 2–4)54 55Total (74): 5-point LS.
Stomach pain and hurt (6), stomach discomfort when eating (5), food and drink limits (6), trouble swallowing (3), heartburn and reflux (4), nausea and vomiting (4), gas and bloating (7), constipation (14), blood in poop (2), diarrhoea (7), worry about going poop (5), worry about stomach aches (2), medicines (4), communication (5).
Items are reverse scored and linearly transformed on a scale from 0 to 100.Higher scores indicate lower problems.
Gastrointestinal symptoms module (acute V.3.0) – parent report for young children (ages 5–7)54 55Total (74): 3-point and 5-point LS.
Stomach pain and hurt (6), stomach discomfort when eating (5), food and drink limits (6), trouble swallowing (3), heartburn and reflux (4), nausea and vomiting (4), gas and bloating (7), constipation (14), blood in poop (2), diarrhoea (7), worry about going poop (5), worry about stomach aches (2), medicines (4), communication (5).
Items are reverse scored and linearly transformed on a scale from 0 to 100.Higher scores indicate lower problems.
Gastrointestinal symptoms module (acute V.3.0) – young child report (ages 5–7)54 55
Gastrointestinal symptoms module (acute V.3.0) – parent report for children (ages 8–12)54 55Total (74): 3-point and 5-point LS.
Stomach pain and hurt (6), stomach discomfort when eating (5), food and drink limits (6), trouble swallowing (3), heartburn and reflux (4), nausea and vomiting (4), gas and bloating (7), constipation (14), blood in poop (bowel movement) (2), diarrhoea (7), worry about going poop (bowel movements) (5), worry about stomach aches (2), medicines (4), communication (5).
Items are reverse scored and linearly transformed on a scale from 0 to 100.Higher scores indicate lower problems.
Gastrointestinal symptoms module (acute V.3.0) – child report (ages 8–12)54 55
Gastrointestinal symptoms module (acute V.3.0) – parent report for teens (ages 13–18)54 55
Gastrointestinal symptoms module (acute V.3.0) – teens report (ages 13–18)54 55
(ii) Rome IV
Rome IV – parent-report form for infants and toddlers (ages 0–3) (R49QG-toddler)57Total (29 for ages 0–12 months; 18 for ages 1–3 years):
Infant gastrointestinal problems (11), vomiting (9), bowel movements (9)
Defined diagnostic criteria for functional gastrointestinal disorders in neonates and toddlers:57
Infant regurgitation, infant rumination syndrome, cyclic vomiting syndrome, infant colic, functional diarrhoea, infant dyschezia, functional constipation.
Parent-report form for children and adolescents (4 years of age and older) (R4PDQ-child)58Total (42):
Belly ache and uncomfortable feelings above the belly button (12), belly aches and abdominal pain around and below the belly button (10), bowel movements (7), nausea and vomiting (9), other symptoms (4).
Defined diagnostic criteria for functional gastrointestinal disorders in children and adolescents:58
Cyclic vomiting syndrome, functional nausea and functional vomiting, rumination syndrome, aerophagia, functional dyspepsia, irritable bowel syndrome, abdominal migraine, functional abdominal pain – not otherwise specified, functional constipation, non-retentive faecal incontinence.
Self-report form for children and adolescents (10 years of age and older) (R4PDQ-child)58
(iii) Spence Children’s Anxiety Scale
Spence – Preschool Anxiety Scale (parent report) (ages 0 to 4)59 60Total (34): 5-point LS.
Generalised anxiety (5), social anxiety (6), obsessive compulsive disorder (5), physical injury fears (7), separation anxiety (5).
Responses are scored 0 (not true at all) to 4 (very often true). A maximum possible score of 112.A score 1 SD above mean for a subscale or total score warrants further clinical investigation. A score of 0.5 SD above the mean on total score is indicative of an elevated, but not clinical level of anxiety.
Spence Children’s Anxiety Scale (parent report) (5 years and older)59 60Total (38 scored, 39 total): 4-point LS.
Panic attack and agoraphobia (9), separation anxiety (6), physical injury fears (5), social phobia (6), obsessive compulsive (6), generalised anxiety disorder/overanxious disorder (6).
Responses are scored 0 (never) to 3 (always). A maximum possible score of 114. T-score calculation.A score 1 SD above mean (T-score of ≥60) for a subscale or total score is indicative of subclinical or elevated levels of anxiety warranting further clinical investigation.
Spence Children’s Anxiety Scale (8 years and older)59 60Total (38 scores, 45 total): 4-point LS.
Separation anxiety (6), social phobia (6), obsessive compulsive (6), panic attack and agoraphobia (9), physical injury fears (5), generalised anxiety (6).
(iv) Short Mood and Feelings Questionnaire
Mood and Feelings Questionnaire: Short Version (parent report on Child) (ages 6–18)61 62 75Total (13): 3-point LS.
Depressive symptoms (13).
Responses are scored 0 (not true) to 2 (true). A maximum possible score of 26.Higher scores suggest more severe depressive symptoms. A score of ≥12 may indicate the presence of depression in the respondent.
Mood and Feelings Questionnaire: Short Version (child self-report) (ages 6–18)61 62 75Total (13): 3-point LS.
Depressive symptoms (13).
  • All questionnaires will be collected from all participants at each time point.

  • N.B. Disease-specific questionnaires can be added into the Qualtrics data collection form, that is, the Paediatric Sleep Questionnaire: Sleep-Disordered Breathing Subscale,76 for children with OSA.

  • HRQOL, health-related quality of life; LS, Likert scale; OSA, obstructive sleep apnoea.