Health-related quality of life and patient education in a group of uremic patients

The main purpose of this thesis was firstly, to describe a group of uremic patients' health-related quality of life (HRQOL) prior to and after having started dialysis and secondly, their HRQOL after participation in a patient education program given before dialysis treatment was started. Several questionnaires were used to collect data concerning disease specific symptoms, perceived health, functional and emotional status, sense of coherence, use of coping strategies, disease specific knowledge and perceived amount of information. Thirty-eight predialysis patients participated in the education program. Twenty-eight of these started maintenance dialysis treatment during the study period with a follow-up evaluation three to nine months after having started dialysis. In addition 28 patients already on dialysis treatment were studied as a comparison group.

The results showed that many of the predialysis uremic patients suffered from several disease related symptoms, poor perceived health, functional disabilities and emotional distress. Fatigue, lack of energy, sleep disturbances, itching, thirst, leg cramps and disabilities in recreation and pastime and home management were the areas mostly reported as disturbed. Most commonly used coping strategies were of confrontational character like maintaining control, finding out more about the situation and hoping. The patients' perception of their HRQOL were, in most areas, constant prior to and after three months or more on dialysis, indicating that dialysis treatment per se did not reduce symptoms, increase sense of overall health or reduce functional and emotional disability. However, sense of fatigue and lack of energy did increase after having started dialysis treatment.

There were significant correlations between the Sense of Coherence (SOC) and the Health Index (HI) and the test for level of anxiety (STAI) in the predialysis stage. Thus, the stronger the SOC, the better the perceived health and the lower the level of anxiety. Interestingly enough, no such correlations were found in the dialysis stage. No significant difference was found between the SOC score reported in the predialysis assessment and the score reported after having started dialysis.

The patients who had participated in the patient education program showed better mood and mobility, lower sense of loneliness, lower level of anxiety and less dysfunction in the overall Sick ness Impact Profile (SIP), in the physical and psychosocial dimension and in recreation and pas time compared with a comparison group, who had received conventional information only. The educated patients perceived an increase in amount of received information and significantly more patients felt that their knowledge was adequate and enabled them to participate in the choice of dialysis modality compared with the comparison group.

It was concluded that many of the uremic patients suffer from impairments, decreased functional ability, poor health perception and have limited opportunities even in the predialysis stage of the disease. In the dialysis stage the educated patients reported less physical and psychosocial disabilities and better emotional status than a non-educated group of patients. Gender, age, marital and educational status also affected the patients' health-related quality of life. The treatment and care plan should include education programs in order to alleviate and prevent the consequences of many demands made on the patients during all stages of the disease so that the patient's own resources might be strengthened while preparing for and receiving dialysis treatment.