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Abstract
This study examined the frequency and severity of sickle related pain, its impact
on quality of life, and methods of coping for 25 children with sickle cell disease,
aged 6-16 years. Subjects were matched with non-affected peers and asked to complete
the Central Middlesex Hospital Children's Health Diary for four weeks. Results indicated
that sickle pain occurred on average one in 14 days, and total summary pain scores
indicated significantly greater pain than for controls. Children with sickle cell
disease could discriminate sickle pain and did not adopt sick role responses to ordinary
childhood ailments. Nearly all sickle pain was dealt with at home. Sickle pain resulted
in over seven times increased risk of not attending school and was highly disruptive
of social and recreational activities. Careful assessment of sickle pain in the home
environment is an essential part of a community focused pain management service, which
effectively supports children's resilience and improves their quality of life.