Table 2.
Report characteristics
| Disease category | # reports | Median # eligible children studied (range)* | Primary unit of analysis (#) (% reports) by disease(s) |
|---|---|---|---|
| Cerebral palsy | 51 | 82.5 (6 - 813) | Child/adolescent (26) (50%) |
| Caregiver/parent (9) (18%) | |||
| Dyad - child/caregiver (12) (24%) | |||
| Family (4) (8%) | |||
| Cystic fibrosis | 11 | 42 (23 - 136) | Child/adolescent (4) (36%) |
| Caregiver/parent (4) (36%) | |||
| Dyad - child/caregiver (3) (27%) | |||
| Diabetes | 100 | 84 (10 - 2,101) | Child/adolescent (44) (44%) |
| Caregiver/parent (18) (18%) | |||
| Dyad - child/caregiver (35) (35%) | |||
| Sibling (1) (1%) | |||
| Family (2) (2%) | |||
| Down syndrome | 9 | 42.5 (25 - 440) | Child/adolescent (1) (11%) |
| Caregiver/parent (4) (44%) | |||
| Dyad - child/caregiver (2) (22%) | |||
| Family (2) (22%) | |||
| Epilepsy | 47 | 79.5 (9 - 474) | Child/adolescent (26) (55%) |
| Caregiver/parent (7) (15%) | |||
| Dyad - child/caregiver (11) (23%) | |||
| Sibling (1) (2%) | |||
| Family (2) (4%) | |||
| Hemoglobinopathies | 25 | 59 (7 - 320) | Child/adolescent (8) (32%) |
| Caregiver/parent (5) (20%) | |||
| Dyad - child/caregiver (11) (44%) | |||
| Sibling (1) (4%) | |||
| Other diseases | 29 | 41 (12 - 272) | Child/adolescent (15) (52%) |
| Caregiver/parent (7) (24%) | |||
| Dyad - child/caregiver (6) (21%) | |||
| Family (1) (3%) | |||
| Reports of multiple, eligible diseases | 32 | 66.5 (9 - 327) | Child/adolescent (8) (25%) |
| Caregiver/parent (16) (50%) | |||
| Dyad - child/caregiver (6) (19%) | |||
| Sibling (1) (3%) | |||
| Family (1) (3%) | |||
| All diseases | 304 | 76 (6 - 2,101) | Child/adolescent (132) (43%) |
| Caregiver/parent (70) (23%) | |||
| Dyad - child/caregiver (86) (28%) | |||
| Sibling (4) (1%) | |||
| Family (12) (4%) |
*Medians and ranges reported on articles for which the number of eligible children was explicitly reported (n = 283) i.e., CP = 50 articles; CF = 10 articles; DM = 94 articles; DS = 8 articles; epilepsy = 44 articles; hemoglobinopathies = 24 articles; other diseases = 27 articles; studies of multiple eligible diseases = 26 articles.