Abstract

Children with sickle cell disease use different coping styles to control their pain. Those who use an affective coping style such as fear and anger self-statements or a passive coping style such as resting have more severe pain, higher utilization of health care services, and worse psychological adjustment. Those who use active coping styles such as diverting attention or praying and hoping engage in greater work and social activities. The association of coping style to the health-related quality of life (HRQL) in children with sickle cell disease is not known. Our study sought to determine the association of coping styles with HRQL in children with sickle cell disease. We hypothesized that children with sickle cell disease who used affective or passive coping styles would have worse HRQL.

To determine the association between coping styles and HRQL, the Child Health Questionnaire-Child Form (CHQ-CF87) was completed by children with SCD age 10–18 years at the time of their annual comprehensive visit to 1 of 2 sickle cell disease clinics. Mean scores were calculated for each of the 12 concepts that make-up the CHQ-CF87. Scores range from 0, representing poor quality of life, to 100, representing a high quality of life. In addition, children also completed the Coping Strategies Questionnaire (CSQ) for sickle cell disease. This questionnaire assesses ways in which children cope with pain based on the child’s response on a 7-point Likert-type scale where 0 =never and 6=always. Mean scores were calculated for each of 3 types of coping styles: affective, passive adherence and active coping. Pearson correlation coefficients were calculated to determine the association of HRQL with coping style. Partial correlation coefficients, controlling for disease severity, were calculated for those relationships with significant associations.

Forty-eight children completed both questionnaires for analysis. The mean age of the children was 13. 3 years (standard deviation 2.2) and 58% were female. Children who used an affective coping style had worse associated HRQL scores in the areas of mental health and self esteem (r of −0.38, p=0.010 and r of −0.35, p=0.015 respectively). Furthermore, children who used an affective coping style or passive coping style reported a greater frequency of disruption in their usual family activities or that their health more likely was a source of family tension (r of −0.39, p=0.006 and r of −0.31, p=0.037 respectively). These relationships persisted after controlling for disease severity. There was no significant association with other domains of HRQL and coping.

In conclusion, children with sickle cell disease who report using affective and passive coping styles have worse mental health and self esteem and increased disruption of family activities. This maladaptive response to pain further impacts the well being of children with sickle cell disease and their families. In addition, these findings support the need to provide psychological intervention and therapy to improve children’s coping abilities to ultimately improve their HRQL.

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