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Table 6 Narrative synthesis of included records on the HRQoL in children with OI

From: The patient clinical journey and socioeconomic impact of osteogenesis imperfecta: a systematic scoping review

domain

N

Findings

Records

Physical function

42

Physical functioning tools mostly assessed mobility, athleticism, and function/independence. Physical functioning and mobility of children with OI were found to significantly differ from reference or control groups and between OI types

[37, 104, 106,107,108, 110, 152, 163, 164, 180, 188, 204, 213, 240, 271,272,273,274,275,276,277,278,279,280,281,282,283,284,285,286,287,288,289,290,291,292,293,294,295,296,297,298]

Pain

15

Few comparisons of pain experienced by children with OI compared with other children have been conducted. Children with OI experience fluctuating pain with bisphosphonate treatment cycles. Differences between fracture and non-fracture pain are poorly understood

[106, 107, 271, 276, 279, 280, 282,283,284, 286, 288, 290, 294, 295, 299]

Fatigue

3

Fatigue in children with OI is poorly understood, but included records indicate that children with OI do not experience significantly more fatigue compared with other children

[106, 276, 300]

Mental health

18

Few records compared the emotional functioning of children with OI to a reference or control population, therefore no consensus was identified

[48, 106, 110, 163, 204, 274, 276, 281,282,283,284,285,286,287, 289, 294, 301, 302]

Social functioning

19

Children with OI may experience impaired social functioning possibly due to the need for careful play and inability to participate in activities. Social functioning may be worse in children with more severe OI types compared with those with mild types

[48, 106, 108, 110, 163, 164, 204, 272,273,274,275,276, 284,285,286,287, 289, 294, 297]

Other

12

Other assessed domains in included records were cognition, speech, physical appearance, dyspnoea, overall wellbeing, eating habits, care experience and barriers to physical activity. Notable findings included the high prevalence of choosy eating in children with OI and high prevalence of food fussiness

[48, 107, 271, 274, 276, 284, 301,302,303,304,305,306]

  1. HRQoL Health-related quality of life, OI Osteogenesis imperfecta