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

Health-Related Quality of Life and Patient Education in a Groupof Uremic Patients BlRGITTA KLANG 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 dialysisand secondly, their HRQOL after participation in a patient education program givenbefore dialysis treatment was started. Several questionnaires were used to collectdata concerning disease specific symptoms, perceived health, functional and emotionalstatus, sense of coherence, use of coping strategies, disease specific knowledgeand perceived amount of information. Thirty-eight predialysis patients participatedin the education program. Twenty-eight of these started maintenance dialysis treatment during the study period with a follow-up evaluation three to nine months afterhaving started dialysis. In addition 28 patients already on dialysis treatment werestudied as a comparison group. The results showed that many of the predialysis uremic patients suffered fromseveral disease related symptoms, poor perceived health, functional disabilitiesand emotional distress. Fatigue, lack of energy, sleep disturbances, itching, thirst,leg cramps and disabilities in recreation and pastime and home management were theareas mostly reported as disturbed. Most commonly used coping strategies were ofconfrontational character like maintaining control, finding out more about the situationand hoping. The patients' perception of their HRQOL were, in most areas, constantprior to and after three months or more on dialysis, indicating that dialysis treatmentper se did not reduce symptoms, increase sense of overall health or reduce functionaland emotional disability. However, sense of fatigue and lack of energy did increaseafter having started dialysis treatment. There were significant correlations between the Sense of Coherence (SOC) and theHealth In dex (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 levelof anxiety. Interestingly enough, no such correlations were found in the dialysisstage. No significant difference was found between the SOC score reported in thepredialysis assessment and the score reported after having started dialy sis. The patients who had participated in the patient education program showed bettermood and mobility, lower sense of loneliness, lower level of anxiety and less dysfunctionin the overall Sick ness Impact Profile (SIP), in the physical and psychosocial dimensionand in recreation and pas time compared with a comparison group, who had receivedconventional information only. The educated patients perceived an increase in amountof received information and significantly more patients felt that their knowledgewas adequate and enabled them to participate in the choice of dialysis modality comparedwith the comparison group. It was concluded that many of the uremic patients suffer from impairments, decreasedfunc tional ability, poor health perception and have limited opportunities even inthe predialysis stage of the disease. In the dialysis stage the educated patientsreported less physical and psychosocial disabilities and better emotional statusthan a noneducated group of patients. Gender, age, marital and educational statusalso affected the patients' health-related quality of life. The treatment and careplan should include education programs in order to alleviate and prevent the consequencesof many demands made on the patients during all stages of the disease so that thepatient's own resources might be strengthened while preparing for and receiving dialysistreatment. Keywords: chronic renal failure, coping, emotional slatus, functional status,health, health-related quality of life, nursing, patient education, predialysis patients,sense of coherence, support, uremic symptoms. ISBN 91-628-2603-4 Stockholm 199