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Table 2 Report characteristics

From: Scoping review of patient- and family-oriented outcomes and measures for chronic pediatric disease

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%)
  1. *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.