Sleep and health-related quality of life in patients with chronic heart failure and their spouses : a descriptive and interventional study

Sammanfattning: The general aim of this thesis was to describe and compare the sleep situation and health-related quality of life in patients with chronic heart failure and their spouses, as well as to evaluate the effects of an intervention with 3-months ofhome based oxygen treatment. Descriptive designs were used to describe how patients with chronic heart failure conceived their sleep situation (I), decisive situations that influenced spouses' support to patients with chronic heart failure in relation to the couple's sleep situation (II), and self-assessed sleep difficulties, daytime sleepiness and their relation to health-related quality oflife in men and women with chronic heart failure, as well as to make a comparison with data from a norm population (III). An interventional design was used to determine the effects of 3-months of home based oxygen treatment regarding both subjective and objective outcomes (IV).Daily life, the disease itself and cardiac symptoms influenced the sleep situation and led to ensuing effects, such as fatigue, listlessness, loss of temper, loss of concentration, a need for daytime sleep, seclusion, information and counseling. Patients handled their sleep disturbances by means of support from their psychosocial environment as well as coping mechanisms related to developed patterns of daily life (I). Decisive situations inhibited or stimulated spouses' support to patients with heart failure, in relation to the couples' sleep situation (II). Self-assessed sleep difficulties such as difficulties initiating sleep, difficulties maintaining sleep, and excessive daytime sleepiness were common in patients with chronic heart failure and gave a decreased health-related quality of life compared to chronic heart failure patients without sleeping difficulties (III). Sleep disordered breathing, with a dominance of central sleep apnea was a very common problem, with a high prevalence, but patients suffering from objectively registered sleep disordered breathing did not show decreased health-related quality of life compared to chronic heart failure patients without sleep disordered breathing. A long-term intervention with nocturnal home based oxygen improved functional exercise capacity for both the whole group of patients with chronic heart failure, as well as in patients with chronic heart failure where sleep disordered breathing occurred. The intervention did not give any persistent improvements regarding cardiac function, objective sleep, subjective sleep, sleep disordered breathing, or healthrelated quality of life (IV).Sleep disturbances are a complex situation where sleep disordered breathing can be seen as one possible organic trigger, together with psychosocial, as well as environmental factors causing a chain reaction with disturbed sleep, daytime sleepiness and decreased health-related quality of life that leads to physical, social, and mental consequences and needs. Further studies are therefore needed from a holistic perspective on both patients with chronic heart failure and their spouses.