An Investigation Into The Relationship Between Illness Representations, Coping and Quality of Life Amongst a UK Sample of Adults With Sickle Cell Disease.

Background: Patients' personal beliefs about their illness have been researched and shown to have at least five dimensions (Leventhal, Diefenbach & Leventhal, 1992). These include: beliefs about the identity of an illness, characterised by the symptoms associated with the illness; beliefs about the cause of the illness; beliefs about the duration of the illness; beliefs about the short and long term consequences of the illness; and beliefs about whether the illness can be cured or controlled. Research has revealed that these five cognitive representations of illness have important implications for how patients conceptualise and cope with their illness (Leventhal et al.,1992). They have been used to understand a range of illness behaviours such as compliance with medical care (Meyer, Leventhal & Guttman,1985), and as a predictor of success when coping with chronic illness (Hampson, Glasgow & Toobert, 1990). This study explored the relationship between illness representations, coping, and quality of life of 57 male and female adults with sickle cell disease, recruited from a Haematology out-patient clinic in London. Method: Participants’ self reported illness representations were assessed using the Illness Perception Questionnaire (IPO) (Weinman, Petrie, Moss-Morris, & Horne, 1996), adapted for sickle cell disease. Pain coping strategies were assessed using the Coping Strategies Questionnaire (Gil, Abrams, Philiips, & Keefe, 1989), and quality of life was assessed using the SF36 Health Survey Questionnaire (Ware, Snow, Kosinski, & Gandek, 1993). Results: The results demonstrated that illness representations were positively related to pain coping strategies, and negatively related to all aspects of quality of life. A series of regression analyses revealed that compared to coping strategies, illness representations, particularly the consequence and illness Identity dimension, explained a significant proportion of the variance in quality of life. Participants with a strong illness identity, who believed their illness had dire consequences, experienced poor general and mental health, poor physical functioning, and frequent perception of bodily pain as measured by the SF36 questionnaire. Demographic variables such as gender and age, and cognitive coping strategies such as biased thinking (catastrophising) and behavioural isolation were also related to poor quality of life. The implications of these results for the management of sickle cell disease is discussed