Sickle cell disease: Pain, coping and quality of life in a study of adults in the UK

OBJECTIVE: To examine the relationship between pain, coping, and quality of life in adult patients with sickle cell disease (SCD) in the UK, and to assess the influence of these factors on the utilization of health services. DESIGN: This cross-sectional study involved 96 adult patients with SCD attending hospitals in London. METHOD: Interview and questionnaire study involving standard measures of pain, health service utilization, coping responses (measured with the Coping Strategies Questionnaire - revised for SCD), and quality of life (measured by the SF36). Data concerning clinical history, complications and haemoglobin levels were also collected. RESULTS: The number and duration of painful sickle cell episodes in the past 12 months varied widely between patients. We found that 49.5% of accident and emergency visits and 45% of hospitalizations were of 10.4% (10) patients. Pain experience accounted for 12.3% of hospital and general practice service use, independently of age, sex, number of SCD complications and haemoglobin levels. Three higher order factors emerged from analysis of the coping strategies questionnaire, reflecting active behavioural and cognitive coping, affecting coping, and passive adherence (e.g. resting, taking fluids). Active coping was positively associated with the number of pain episodes, while passive adherence coping was related to pain intensity. Psychological coping was unrelated to health service utilization. Marked impairment on many dimensions of quality of life was apparent in the analyses of the SF36. Affective coping was associated with impaired quality of life independently of demographic and clinical variables. CONCLUSIONS: It is evident that sickle cell disease involves not only severe recurrent pain, but also other impairments in health-related quality of life. Psychological coping patterns are relevant both to the experience of pain, and to broader adjustment. Patients may benefit from interventions that enhance the use of appropriate pain coping techniques and other strategies to improve quality of life.