Ways of coping with cystic fibrosis: implications for treatment adherence

Purpose : How individuals cope with aspects of cystic fibrosis (CF) has the potential to influence their self management and the course of their disea se. To evaluate how individuals cope with CF, a disease specific coping sca le was developed and validated. A second objective of the work was to exami ne the relationship between coping styles and treatment adherence. Methods : The development of the coping scale constituted a longitudinal de sign. A cross-sectional questionnaire design was used to examine the coping -adherence relationship. The development and validation of the coping scale comprised three phases: (1) Initially, 60 patients were interviewed to ide ntify CF concerns. From this information a list of 23 concerns were recorde d; (2) Eighty-three patients were interviewed to identify CF coping respons es. For each concern, they were asked what they did or thought to ease the worry. A list of 24 coping strategies were recorded that formed a comprehen sive set of items as to how people with CF act, feel and think about aspect s of their disease; and (3) Further development and testing of the question naire involved 174 patients completing the measure. Four distinct ways of c oping with CF were identified by factor analysis. These were termed optimis tic acceptance, hopefulness, distraction and avoidance. The cronbach alpha coefficients were 0.74 (optimistic acceptance), 0.69 (hopefulness), 0.71 (d istraction) and 0.76 (avoidance). To evaluate the relationship between copi ng and treatment adherence 60 patients completed the CF Coping Questionnair e and the Manchester Adult Cystic Fibrosis Compliance Questionnaire. Results : Compared with patients who were non-adherent, those who were adhe rent scored higher on the optimistic acceptance scale (physiotherapy p <0.0 5, enzymes p <0.003, vitamins p <0.05) and hopefulness scale (physiotherapy p <0.002, enzymes p <0.001). Those who were partially adherent reported us ing distraction as a way of coping to a greater extent than adherent or non -adherent patients (all p's <0.05). Nonadherent patients used avoidance str ategies to a greater extent than those who were adherent (physiotherapy p < 0.05, enzymes p <0.04), although interestingly, adherence with exercise was associated with avoidant coping (p <0.004). Conclusions : The degree of adherence to treatments was influenced by a per son's style of coping. The identification of effective coping strategies to aid both long-term psychological and clinical well-being should improve th e management of nonadherence.