LIVING WITH PERIPHERAL ARTERIAL DISEASE Quality of life and the patients' view of meaning

Sammanfattning: The overall aim of this thesis was to investigate quality of life and the meaning of living with peripheral arterial disease (PAD) before and after revascularization in a long-term and methodological perspective. The sample in the first study consisted of 142 patients with PAD who were planned for a revascularization. Quality of life (QoL) assessment with the Nottingham Health Profile (NHP) was made before, 6 months, 12 months and up to 4 years after revascularization. The second study included 90 patients with PAD. QoL assessment was made before and one year after revascularization using comparable domains of NHP and the Short Form 36 Health Survey (SF-36) questionnaires. The third study comprised interviews with 24 patients with PAD about their experiences of living with PAD and the influence on activities of daily living (ADL). In the fourth study 14 patients who had undergone revascularizations were interviewed after 6 months and 2½ years about the long-term experiences of living with PAD and the recovery following revascularization. QoL was improved 6 and 12 months after revascularization in patients with intermittent claudication (IC) in energy, pain, emotional reactions and physical mobility, while those with critical limb ischaemia (CLI) had improvements in pain and sleep. The improvement in pain was particularly evident for both groups and remained significantly improved up to 4 years after revascularization. Patients with CLI, however, deteriorated significantly with regard to physical mobility between 12 months and 4 years. Being a woman and belonging to the critical ischaemia group was significantly associated with a low QoL. The SF-36 was less skewed, more homo¬geneous and showed higher internal consistency except for social functioning one year postoperatively than the NHP. There was an average convergent validity in three of the five comparable domains one year after revascularization. NHP was more sensitive in discriminating among levels of ischaemia regarding pain and more able to detect changes in the critical ischaemia group. Interviews with PAD patients revealed that living with PAD meant carrying a hard-to-bear physical, social and emotional burden, and struggling for relief. The experience of burden was interpreted in the following themes representing consequences and strategies for gaining control in daily life: (I) being limited by the burden; (II) striving to relieve the burden; (III) accepting and adapting to the feeling of burden. The long-term experience of living with PAD meant gradually becoming aware of having a chronic disease. This awareness was interpreted in the following themes representing the transition from being in an acute phase of the PAD to the recovery after revascularization and entering a chronic phase of PAD: (I) becoming better but not cured; (II) recapturing control over life; (III) reappraising meaning in life. In conclusion, revascularization results in improved QoL and functional ability and patients with PAD have durable benefits with regard to pain up to as many as 4 years after revascularization. The degree to which QoL was durable over time seems to depend on the severity of the disease and gender. Although NHP and SF-36 had acceptable degrees of reliability, convergent and construct validity, their long-term sensitivity was not satisfactory in detecting areas such as the social and emotional influences which were evident problems in the interviews. However, using both quantitative and qualitative methods made it possible to reflect different aspect of PAD and the factors that have a positive or negative influence on QoL. Patients? ability to adapt to their chronic disease played an important role in achieving a period of less disruption and greater stability. The patients had to become aware of having a chronic disease by themselves, which probably meant a delayed transition towards health within illness and normality. Patients with PAD present a complex situation which requires a comprehensive view where information and education may be important complementary interventions which can affect QoL and the ability to perform ADL in a positive direction.