Assessment of acute and chronic pain symptoms in children with cystic fibrosis

Pain is important to assess and treat in children with cystic fibrosis (CF), because pain symptoms may limit children's ability to participate in their CF-related care and may reduce their overall well-being and quality of life. The aims of this study were to: 1) assess acute and chronic pain symptoms as reported by children with CF, and 2) examine the relationship between pain symptoms and disease severity as measured by percentage of forced expired volume in 1 sec (FEV1%). Forty-six children completed a self-report questionnaire assessing characteristics of chronic disease-related pain (frequency, intensity, duration, associated emotional upset, and location of pain). Children also rated their pain intensity associated with common CF-related procedures. The primary locations of pain reported were the abdominal/pelvic region, chest, and head/neck. Forty-six percent of the sample described pain occurring at least once per week. Most children reported their pain intensity as mild and of short duration. However, a small subgroup of children reported longer-lasting and moderately intense pain. Children with chest pain were found to be particularly at risk for experiencing more functional limitations and a significantly lower FEV1% compared to children without chest pain. The majority of children reported that nonpharmacological therapies (e.g., medication, rest, or distracting activities) provided some pain relief. Disease-related pain is common for children and adolescents with CF, suggesting that pain assessment should be a routine part of their clinical care. Further research is clearly needed to better understand the sources of pain and how best to provide relief.