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.
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