Collecting Paediatric Health-Related Quality of Life Data: Assessing the Feasibility and Acceptability of the Australian Paediatric Multi-Instrument Comparison (P-MIC) Study
Abstract
:1. Introduction
2. Methods
2.1. Study Design and Participants
2.2. Data Collection
2.3. Instruments and Analysis
2.4. Statistical Analysis
2.4.1. Aim 1: Understand the Feasibility of Collecting Data Using Paediatric HRQoL Instruments in a Research Setting
2.4.2. Aim 2: Understand the Acceptability and Feasibility for Children and Their Caregivers to Complete Common Generic Paediatric HRQoL Instruments
3. Results
3.1. Aim 1: Understand the Feasibility of Collecting Data Using Paediatric HRQoL Instruments in a Research Setting
3.2. Aim 2: Understand the Acceptability and Feasibility for Children and Their Caregivers to Complete Common Generic Paediatric HRQoL Instruments
4. Discussion
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Instrument | Number Items | Recall Period | Outcome Scale | Outcome Levels | Domains Assessed |
---|---|---|---|---|---|
PedsQL generic core 4.0 [20] | 23 items (5–18 years) | Past month | Frequency | 5-point scale | Physical functioning, emotional functioning, social functioning, and school functioning. |
EQ-5D-Y-3L [21] | 5 items | Today | Severity | 3-point scale; and EQ VAS, which is a global health measure on a 0–100 sliding scale | Mobility, looking after self, doing usual activities, having pain or discomfort, and feeling worried, sad, or unhappy. |
EQ-5D-Y-5L [21] | 5 items | Today | Severity | 5-point scale | Mobility, looking after self, doing usual activities, having pain or discomfort, and feeling worried, sad, or unhappy. |
CHU9D [22,23] | 9 items | Today | Severity | 5-point scale | Worry, sadness, pain, tiredness, annoyance, school, sleep, daily routine, and activities. |
AQoL-6D Adolescent [24,25] | 20 items | Past week | Severity | 4- to 6-point scale | Independent living, mental health, coping, relationships, pain, and senses. |
HUI 2/3 [26,27,28] | 15 items | Usual | Severity | 4- to 6-point scale | Vision, hearing, speech, ambulation, dexterity, emotion, cognition, and pain. |
PROMIS-25 Paediatric Profile v2 [29] | 25 items | Past week | Severity (5 items) and frequency (20 items) | 5-point scale; except for the pain item, which is on a scale from 0–10 | Depressive symptoms, anxiety, physical function–mobility, pain interference, fatigue, and peer relationships. |
Participant Characteristic | N (% Completed Initial Survey) or Mean (sd) | Australian Population Norm a | ||||
---|---|---|---|---|---|---|
Total Sample | Sample Recruitment Pathway | Online Panel Sample Type | ||||
Hospital * | Online Panel | General Population ** | Condition Specific *** | |||
Sample characteristics | ||||||
Completed initial survey, n (%) | 5945 (100) | 759 (100) | 5186 (100) | 1531 (100) | 3655 (100) | n/a |
Completed follow-up survey, n (%) | 2346 (39.5) | 610 (80.4) | 1736 (33.5) | 600 (39.2) | 1136 (31.1) | n/a |
General population 2-day follow-up survey completed of n = 237 allocated, n (% of allocated) | n/a | n/a | n/a | 169 (71.3) | n/a | n/a |
General population 4-week follow-up survey completed of n = 1361 allocated, n (% of allocated) | n/a | n/a | n/a | 431 (31.7) | n/a | n/a |
Online panel condition groups (Sample 3) | 3655 (61.5) | n/a | n/a | n/a | n/a | n/a |
Asthma | 487 (8.2) | n/a | n/a | n/a | n/a | n/a |
Attention deficit hyperactivity disorder (ADHD) | 492 (8.3) | n/a | n/a | n/a | n/a | n/a |
Autism spectrum disorder (ASD) | 510 (8.6) | n/a | n/a | n/a | n/a | n/a |
Anxiety or depression | 480 (8.1) | n/a | n/a | n/a | n/a | n/a |
Eating disorder | 186 (3.1) | n/a | n/a | n/a | n/a | n/a |
Epilepsy | 272 (4.6) | n/a | n/a | n/a | n/a | n/a |
Tooth problems | 490 (8.2) | n/a | n/a | n/a | n/a | n/a |
Sleep problems | 346 (5.8) | n/a | n/a | n/a | n/a | n/a |
Recurrent abdominal pain | 392 (6.6) | n/a | n/a | n/a | n/a | n/a |
HRQoL instrument report type initial survey proxy report, n (%) | 2083 (35.0) | 306 (40.3) | 1777 (34.3) | 536 (35.0) | 1241 (34.0) | n/a |
HRQoL instrument report type follow-up survey proxy report, n (%) of those who have completed follow-up survey) | 975 (41.6) | 289 (47.4) | 686 (39.5) | 249 (41.5) | 437 (38.5) | n/a |
Completed core HRQoL instruments (PedsQL, CHU9D, EQ-5D-Y-3L, EQ-5D-Y-5L) | 5945 (100) | 759 (100) | 5186 (100) | 1531 (100) | 3655 (100) | n/a |
Completed AQoL-6D | 1523 (25.6) | n/a | 1523 (29.4) | 499 | 1024 | n/a |
Completed HUI 2/3 | 1728 (29.1) | n/a | 1728 (33.3) | 522 | 1206 | n/a |
Completed PROMIS-25 | 1730 (29.1) | n/a | 1730 (33.3) | 510 | 1220 | n/a |
Study Child characteristics | ||||||
Child age, mean (sd) | 10.9 (3.9) | 10.6 (3.8) | 10.9 (3.9) | 11.2 (4.0) | 10.8 (3.9) | n/a |
Child gender—female, n (%) | 2737 (46.0) | 333 (43.9) | 2404 (46.4) | 738 (48.2) | 1666 (45.6) | 48.7% |
Child of Aboriginal and/or Torres Strait Islander origin—yes, n (%) | 379 (6.4) | 22 (2.9) | 357 (6.9) | 51 (3.3) | 306 (8.4) | 3.7% |
Child speaks language other than English spoken at home—yes, n (%) | 513 (8.6) | 92 (12.1) | 421 (8.1) | 201 (13.1) | 220 (6.0) | 13.1% |
Child has chronic health condition or disability (lasting at least 6 months), n (%) | 2537 (42.7) | 605 (79.7) | 1932 (37.3) | 150 (9.8) | 1782 (48.8) | n/a |
Special healthcare need b—yes, n (%) | 2583 (43.5) | 572 (75.4) | 2011 (38.8) | 117 (7.6) | 1894 (51.8) | 17.3% |
Caregiver and family characteristics | ||||||
Caregiver age, mean (sd) | 40.8 (8.5) | 42.6 (7.2) | 40.5 (8.7) | 42.5 (9.1) | 39.7 (8.3) | 41.1 (mean) |
Caregiver highest education level—bachelor’s degree or above, n (%) | 2161 (36.4) | 351 (46.3) | 1810 (34.9) | 611 (39.9) | 1199 (32.8) | 28.9% |
Household income AUD 2000 or more per week (AUD 104,000 or more per year), n (%) | 1977 (33.3) | 274 (36.1) | 1703 (32.8) | 589 (38.5) | 1114 (30.5) | 47.9% |
Single parent household, n (%) | 1679 (28.7) | 163 (21.9) | 1516 (29.7) | 352 (23.3) | 1164 (32.3) | 17.8% |
Remoteness (based on postcode)—major cities, n (%) | 4254 (71.6) | 568 (74.8) | 3686 (71.1) | 1150 (75.1) | 2536 (69.4) | 66.4% |
Quality Variable | N (%) or Median (IQR) | |||||
---|---|---|---|---|---|---|
Survey | Sample Recruitment Pathway | Online Panel Sample Type | ||||
Initial | Follow-Up | Hospital * | Online Panel | General Population ** | Condition Specific *** | |
Extremely inconsistent response (+/− three levels) for similar items, n(%) | ||||||
EQ-5D-Y-5L (pain)/CHU9D (pain) | 34 (0.6) | 52 (2.2) | 6 (0.8) | 28 (0.5) | 7 (0.5) | 21 (0.6) |
EQ-5D-Y-5L (looking after self)/CHU9D (daily routine) | 90 (1.5) | 73 (3.1) | 20 (2.6) | 70 (1.4) | 4 (0.3) | 66 (1.8) |
Very inconsistent response (+/− two levels) for similar items, n(%) | ||||||
EQ-5D-Y-5L (pain)/CHU9D (pain) | 189 (3.2) | 95 (4.1) | 40 (5.3) | 149 (2.9) | 20 (1.3) | 129 (3.5) |
EQ-5D-Y-5L (looking after self)/CHU9D (daily routine) | 407 (6.9) | 161 (6.9) | 67 (8.8) | 340 (6.6) | 31 (2.0) | 309 (8.5) |
Time to Complete Instrument in Seconds, Median (IQR) | ||||||||||
---|---|---|---|---|---|---|---|---|---|---|
Instrument | Survey | Child Age | Report Type | Sample Recruitment Pathway | Online Panel Sample Type | |||||
Initial | Follow-Up | 5–12 years | 13–18 years | Self-Report | Proxy Report | Hospital * | Online Panel | General Population ** | Condition Specific *** | |
PedsQL (23 items) | 96.7 (73.8, 133.5) | 90.3 (68.6, 123.4) | 96.5 (73.1, 135.8) | 97.1 (75.1, 129.5) | 96.2 (73.3, 137.6) | 97.5 (74.8, 127.1) | 125.6 (94.7, 186.4) | 93.6 (71.9, 126.5) | 90.9 (68.8, 126.7) | 94.9 (73.3, 126.3) |
EQ-5D-Y-3L (including EQ VAS) (6 items) | 46.7 (34.4, 65.8) | 43.0 (31.1, 60.9) | 46.6 (35.1, 66.6) | 46.7 (35.1, 64.9) | 46.3 (34.1, 66.2) | 47.5 (35.3, 65.3) | 58.9 (43.2, 88.7) | 45.5 (33.5, 62.9) | 42.4 (30.9, 59.1) | 46.5 (34.6, 64.3) |
EQ-5D-Y-5L (no EQ VAS) (5 items) | 29.0 (20.9, 41.8) | 27.7 (19.8, 40.8) | 29.1 (20.8, 42.4) | 28.7 (21.0, 41.2) | 29.1 (20.9, 42.4) | 28.9 (20.9, 40.4) | 36.6 (26.0, 55.4) | 28.1 (20.5, 40.1) | 25.3 (18.3, 36.3) | 29.4 (21.5, 41.4) |
CHU9D (9 items) | 56.3 (41.5, 79.3) | 52.0 (38.4, 75.4) | 56.3 (41.1, 80.5) | 56.5 (42.5, 77.8) | 56.2 (41.4, 80.8) | 56.6 (41.8, 77.2) | 72.7 (53.1, 101.5) | 54.1 (40.3, 75.5) | 50.1 (37.1, 72.6) | 56.0 (42.0, 76.4) |
AQoL-6D (20 items) | 147.2 (107.0, 208.2) | 132.9 (96.8, 190.6) | 146 (102.9, 205.1) | 151.6 (111.4, 215.1) | 141.6 (101.8, 201.9) | 157.9 (115.7, 215.5) | n/a | n/a | 135.9 (99.1, 183.7) | 152.5 (111.3, 217.8) |
HUI 2/3 (15 items) | 112.4 (75.5, 167.2) | 94.1 (63.5, 144.8) | 109.5 (73.8, 163.7) | 117.7 (79.2, 173.5) | 111.9 (75.7, 163.5) | 113.6 (75.0, 171.8) | n/a | n/a | 96.5 (68.3, 147.4) | 120.0 (81.2, 173.1) |
PROMIS-25 (25 items) | 98.7 (74, 133.2) | 93.3 (70.4, 133.6) | 96.8 (72.0, 131.4) | 100.7 (77.1, 134.4) | 94.5 (71.2, 128.8) | 106.1 (80.6, 140.8) | n/a | n/a | 94.8 (69.8, 128.1) | 100.1 (75.8, 135.3) |
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Jones, R.; O’Loughlin, R.; Xiong, X.; Bahrampour, M.; McGregor, K.; Yip, S.; Devlin, N.; Hiscock, H.; Mulhern, B.; Dalziel, K.; et al. Collecting Paediatric Health-Related Quality of Life Data: Assessing the Feasibility and Acceptability of the Australian Paediatric Multi-Instrument Comparison (P-MIC) Study. Children 2023, 10, 1604. https://doi.org/10.3390/children10101604
Jones R, O’Loughlin R, Xiong X, Bahrampour M, McGregor K, Yip S, Devlin N, Hiscock H, Mulhern B, Dalziel K, et al. Collecting Paediatric Health-Related Quality of Life Data: Assessing the Feasibility and Acceptability of the Australian Paediatric Multi-Instrument Comparison (P-MIC) Study. Children. 2023; 10(10):1604. https://doi.org/10.3390/children10101604
Chicago/Turabian StyleJones, Renee, Rachel O’Loughlin, Xiuqin Xiong, Mina Bahrampour, Kristy McGregor, Shilana Yip, Nancy Devlin, Harriet Hiscock, Brendan Mulhern, Kim Dalziel, and et al. 2023. "Collecting Paediatric Health-Related Quality of Life Data: Assessing the Feasibility and Acceptability of the Australian Paediatric Multi-Instrument Comparison (P-MIC) Study" Children 10, no. 10: 1604. https://doi.org/10.3390/children10101604