Table 2.
Summary of characteristics of included generic multidimensional childhood patient-reported outcome measures designed to be accompanied by preference-based value setsa
| # | Acronym: name | Reference; country | Target age (years) | Perception captured (category)b | Respondent type | Administration mode | Recall period | Domains (number, n) | Items n | Response options [scoring method] |
|---|---|---|---|---|---|---|---|---|---|---|
| 1 | 16D: 16-Dimensional Health-Related Measure | Apajasalo [18]; Finland | 12–15 | No (FDH) | Child; observer | By self or interviewer | Today | Mobility; vision; hearing; breathing; sleeping; eating; speech; excretion; school and hobbies; mental function; discomfort and symptoms; depression; distress; vitality; appearance; friends (n = 16) | 16 | 5-point scale [value set available] |
| 2 | 17D | Apajasalo [67]; Finland | 8–11 | No (FDH) | Child; observer | By interviewer | Today | Mobility; vision; hearing; breathing; sleeping; eating; speech; excretion; school and hobbies; mental function; discomfort and symptoms; depression; distress; vitality; appearance; friends; concentration (n = 17) | 17 | 5-point scale [value set available] |
| 3 | AHUM: Adolescent Health Utility Measure | Beusterien [78]; UK | 12–18 | No (FDH) | Child | By interviewer | Today | Self-care; pain; mobility; strenuous activities; self-image; health perceptions (n = 6) | 6 | 4- to 7-point scale [value set available] |
| 4 | AQoL-6D Adolescent: Assessment of Quality of Life, 6-Dimensional, Adolescent | Moodie [37]; Australia, New Zealand, Fiji, Tonga | 15–18 | No (FDH) | Child | By self | Past week | Physical ability; social and family relationships; mental health; coping; pain; vision, hearing and communication (n = 6) | 20 | 4- to 6-point scale [value set available] |
| 5 | CH-6D: Child Health—6 Dimensions | Kang [50]; South Korea | 7–12; 16–18 | No information | Child | By self; mobile | Not stated | Not stated (n = 6) | 6 | 3- to 4-point scale [value set planned/in development] |
| 6 | CHSCS-PS: Comprehensive Health Status Classification System—Preschool | Saigal [60]; Canada, Australia | 2–5 | No (FDH) | Observer (clinicians, parents) | By self | Past week | Vision; hearing; speech; mobility; dexterity; self-care; emotion; learning and remembering; thinking and problem solving; pain; behaviour; general health (n = 12) | 12 | 3- to 5-point scale [value set planned/in development] |
| 7 | HUI2: Health Utilities Index 2 | Torrance [75]; Canada | 8–18 | No (FDH) | Child | By self or interviewerc | General | Sensation; mobility; emotion; cognition; self-care; pain; fertility (n = 7) | 7 | 3- to 5-point scale [value set available] |
| 8 | HUI2 Informant only | Torrance [75] | 5–8 | No (FDH) | Observer | By self or interviewer | General | See HUI2 | 7 | See HUI2 |
| 9 | HUI3: Health Utilities Index 3 | Furlong [148]; Canada | 8–18 | No (FDH) | Child | By self or interviewerc | General | Vision; hearing; speech; ambulation/mobility; pain; dexterity; emotion; cognition (n = 8) | 8 | 5- to 6-point scale [value set available] |
| 10 | HUI3 Informant only | Furlong [148] | 5–8 | No (FDH) | Observer | By self or interviewer | General | See HUI3 | 8 | See HUI3 |
| 11 | CHU9D: Child Health Utility 9D | Stevens [84, 149]; UK | 7–11 | No (FDH) | Child; observer | By self | Today/last night | Worried; sad; annoyed; tired; pain; sleep; daily routine; school work/homework; able to join in activities (n = 9) | 9 | 5-point scale [value set available] |
| 12 | EQ-5D-Y: EuroQoL 5-Dimensional questionnaire for Youth | Wille [38]; 7 countriesd | 8–15 | No (FDH) | Child; observer | By self | Today | Mobility; self-care; usual activities; pain/discomfort; feeling worried/sad/unhappy; general health VAS (n = 5 + VAS) | 5 | 3-point scale + VAS [value set available] |
| 13 | EQ-5D-Y Proxy: EQ-5D-Y for informant | Gusi, Verstraete [40, 150]; Spain, South Africa | 3–7 | No (FDH) | Observer | By self (mail) or interviewer (telephone) | Today | See EQ-5D-Y | 5 | See EQ-5D-Y |
| 14 | EQ-5D-Y-5L: EQ-5D-Y, 5 levels | Kreimeier [151]; Germany, Spain, Sweden, UK | 8–15 | No (FDH) | Child | By self | Today | Mobility; self-care; usual activities; pain/discomfort; feeling worried/sad/unhappy; general health VAS (n = 5 + VAS) | 5 | 5-point scale + VAS [value set planned/in development] |
| 15 | IQI: Infant health-related Quality of life Instrument | Jabrayilov [51]; UK, New Zealand, Singapore | 0–1 | No (FDH) | Observer | By self; mobile | Today | Sleeping; feeding; breathing; stooling/poo; mood; skin; interaction (n = 7) | 7 | 4-point scale [value set available] |
| 16 | QWB: Quality of Well-Being scale | Kaplan [152, 153]; US | N/A | No (FDH) | Child; observer | by self or interviewer | Functional level: general, symptoms: past 3 days except today | Mobility; physical activity; social activity; symptom-problem complex (n = 4) | 61 | 2- to 4-point scale [value set available] |
| 17 | TANDI: Toddler and Infant health related quality of life instrument | Verstraete (2020b); (2020c) [39, 154]; South Africa | 0–3 | No (FDH) | Observer | By self; mail | Today | Movement; play; pain; relationships; communication; eating; general health VAS (n = 6) | 6 | 3-point scale [value set planned/in development] |
FDH functioning, disability and health, HRQoL health-related quality of life, QoL quality of life, VAS visual analogue scale, N/A Not applicable
aMeasures arranged alphabetically; family of measures (e.g. CHSCS-PS, HUI2 and HUI3) arranged together
bDenotes whether the measure items capture child respondent’s perception (i.e. his/her enjoyment, satisfaction, expectations, standards and concerns) on health, health-related aspect or position in life: ‘yes’ if more than 75% of items did; ‘no’ if less than 25% of items did; ‘some’ if between 25% and 75% of items did. ‘Yes’ implies that the measure is predominantly a QoL or HRQoL measure; ‘no’ predominantly an FDH measure; and ‘some’ a mix of QoL/HRQoL and FDH
cInterviewer-administered for age 8–12
dGermany, Spain, South Africa, Italy, Sweden, The Netherlands and the UK