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Exploring pain interference and self-perceived health status in children with osteogenesis imperfecta - a
Anna Hallin Provenzano1,2, Eva Åström1,3, Kristina Löwing4,5
1Department of Women's and Children's Health, Neuropediatric Unit, Karolinska Institutet, Karolinska vägen 37A7tr, 171 76, Stockholm, Sweden.
Insights
Chronic pain is prevalent in children with Osteogenesis Imperfecta (OI), significantly impacting daily life and self-perceived health. Early pain management is crucial to prevent a cycle of inactivity and further health complications.
Area of Science:
- Pediatric Rheumatology
- Orthopedics
- Pain Management
Background:
- Chronic pain affects children with Osteogenesis Imperfecta (OI), impacting daily life and health status.
- Limited knowledge exists on the extent of pain and its interference in OI patients.
- This study investigates chronic pain, its interference, and self-perceived health in children with OI.
Purpose of the Study:
- To explore the presence of chronic pain in children with OI.
- To assess the interference of pain in the daily lives of children with OI.
- To evaluate the self-perceived health status of children with OI.
Main Methods:
- Cross-sectional study of 28 children (aged 6-18) with OI types I, III, or IV.
- Utilized standardized interviews, Numeric Pain Rating Scale (NPRS), Pain Interference Index, and PROMIS-25.
- Assessed pain presence, intensity, frequency, location, and impact on daily activities and health.
Main Results:
- 27 out of 28 children reported chronic pain, interfering with daily life across all OI types.
- Common pain sites included the back and feet; foot pain was more frequent in type I OI.
- Pain interference strongly correlated with reduced self-perceived health status, particularly mobility in type III OI.
Conclusions:
- Nearly all children with OI experience pain that interferes with activities and reduces health status.
- Pain avoidance can lead to inactivity, decreased bone density, and increased fracture risk.
- Adequate pain-reducing interventions are essential for managing chronic pain in children with OI.
Background:
Chronic pain may affect and interfere in children's everyday life and can be present in children with Osteogenesis Imperfecta (OI). However, the knowledge is still sparse to what extent pain is present, how pain interfere in children's everyday life and affect their self-perceived health status. The purpose of the study was therefore to explore presence of chronic pain, pain interference in daily life, and self-perceived health status in children with OI.
Methods:
Children with OI, aged 6-18 years, were recruited consecutively to this cross-sectional study. Participants answered a standardised interview including five pre-structured questions, and the Numeric Pain Rating Scale (NPRS), the Pain Interference Index, and a questionnaire concerning self-perceived health status the Patient Reported Outcomes Measurement Information System Pediatric-25 Profile v1.1 (PROMIS-25).
Results:
Twenty-eight children (median: 11 years, IQR 6) with OI type I, III, or IV participated. Pain was present in 27 of 28 children and interfered in their everyday life regardless of OI-type, sex, and age. The median NPRS for average pain intensity was 4 (IQR 2), the median for pain frequency was 2-3 times/week, and the median frequency of school absence due to pain was 2-3 times per month. The most common pain locations were back and feet. Pain in the feet was more frequently reported in children with type I (p = 0.032), and pain in the hip was more often reported in children ≥13 years (p = 0.011). The children were asked what they thought to be the cause of pain and the most frequent response was "walking long distances". Self-perceived health status for mobility was lower than the general population, and lowest for children with type III (p = 0.016). Pain interference was associated with children's self-perceived health status (rs = 0.84, p < 0.001).
Conclusion:
Almost all children experienced pain, which interfered in children's everyday lives, affected participation in various activities and was associated with reduced self-perceived health status. If children avoid physical activities because of pain, it might cause a vicious circle of inactivity, which further decreases bone density and increase the risk of fractures. The results emphasize the importance to offer adequate pain reducing interventions.
