A Multimethod, Patient-Oriented Examination of Pain in Childhood Cancer Survivors

Abstract

Emerging theory and empirical work suggest that pain is a significant late effect of childhood cancer and trigger of fear of cancer recurrence (FCR). This dissertation aimed to: explore the experience and meaning of pain after childhood cancer (Study 1); experimentally quantify differences in pain and sensory functioning in childhood cancer survivors (Study 2); adapt and validate self-report measures of FCR for childhood cancer survivors and parents (Study 3); and examine the relationships between pain, anxiety, pain catastrophizing and FCR in childhood cancer survivors and their parents (Study 4). Study 1 presents the findings from a qualitative study that explored the experience and meaning of pain in 10 childhood cancer survivors (ages 8-18 years) and their parents. Three superordinate themes were generated: (a) pain is a changed experience after cancer; (b) pain may be interpreted as a threat; and (c) pain interpretation occurs within the context of how the cancer experience is appraised. In Study 2, 56 childhood cancer survivors (ages 8-17 years) completed a standardized quantitative sensory testing (QST) protocol. Results revealed pervasive sensory differences compared to reference values present years after treatment completion. Demographic, clinical, and psychosocial risk factors for differences in sensory processing were identified. In Study 3, the Fear of Cancer Recurrence Inventory (FCRI) was adapted for childhood cancer survivors (the FCRI-Child) and parents (the FCRI-Parent). Psychometric properties of the adapted measures were examined. Data were collected from 124 survivors (ages 8-18 years) and 106 parents. The FCRI-Child and FCRI-Parent demonstrated strong internal consistency, construct validity, and criterion validity. Study 4 summarizes the relationship between anxiety, pain intensity, pain catastrophizing, and FCR in the sample of childhood cancer survivors and parents from Study 2. For survivors, greater anxiety symptoms were associated with increased pain intensity, pain catastrophizing, and FCR. For parents, greater anxiety symptoms and pain catastrophizing, but not child pain intensity, were associated with FCR. Pain catastrophizing predicted unique variance in parent and child FCR. Taken together, this dissertation contributes to the understanding of pain after childhood cancer and its relationship with FCR. Findings point to potential targets for intervention for this complex population.