Course of symptoms and health-related quality of life during specialized pre-dialysis care.
BACKGROUND
Concerns are present on the limited value of renal function alone in defining the optimal moment to start dialysis. Disease-related symptoms and health-related quality of life (HRQOL) may have additional clinical value in defining this moment, but little is known about how these parameters change during pre-dialysis care. The aims of our study were to describe the course of symptoms and HRQOL during pre-dialysis care and to investigate their association with poor health outcomes.


METHODS
In the prospective PREPARE-2 cohort, incident patients starting specialized pre-dialysis care were included when referred to one of the 25 participating Dutch outpatient clinics (2004-2011). In the present analysis, 436 patients with data available on symptoms and HRQOL were included. Clinical data, symptoms (revised illness perception questionnaire), and HRQOL (short form-36 questionnaire; physical and mental summary score) were collected every 6-month interval. A time-dependent Cox proportional hazard model was used to associate symptoms and HRQOL with the combined poor health outcome (i.e. starting dialysis, receiving a kidney transplant, and death).


RESULTS
All symptoms increased, especially fatigue and loss of strength, and both the physical and mental summary score decreased over time, with the most pronounced change during the last 6-12 months of follow-up. Furthermore, each additional symptom (adjusted HR 1.04 (95% CI, 1.00-1.09)) and each 3-point lower physical and mental summary score (adjusted HR 1.04 (1.02-1.06) and 1.04 (1.02-1.06) respectively) were associated with a higher risk of reaching the combined poor health outcome within the subsequent 6 months.


CONCLUSIONS
The number of symptoms increased and both the physical and mental HRQOL score decreased during pre-dialysis care and these changes were associated with starting dialysis, receiving a kidney transplant, and death. These results may indicate that symptoms and HRQOL are good markers for the medical condition and disease stage of pre-dialysis patients.
Department of Clinical Epidemiology, Leiden University Medical Center, Leiden, The Netherlands.
Moniek C M
MC
de Goeij
Department of Clinical Epidemiology, Leiden University Medical Center, Leiden, The Netherlands.
Gurbey
G
Ocak
Department of Nephrology, Leiden University Medical Center, Leiden, The Netherlands.
Joris I
JI
Rotmans
Department of Internal Medicine, Nephrology, Groene Hart Hospital, Gouda, The Netherlands.
Jan-Willem
JW
Eijgenraam
Department of Clinical Epidemiology, Leiden University Medical Center, Leiden, The Netherlands.
Friedo W
FW
Dekker
Department of Clinical Epidemiology, Leiden University Medical Center, Leiden, The Netherlands.
Nynke
N
Halbesma
D000368:Aged; D005260:Female; D005500:Follow-Up Studies; D005919:Glomerular Filtration Rate; D006304:Health Status; D006801:Humans; D007674:Kidney Diseases / Q000523:psychology* / Q000628:therapy; D007677:Kidney Function Tests; D008297:Male; D008603:Mental Health; D008875:Middle Aged; D005791:Patient Care; D011446:Prospective Studies; D011788:Quality of Life; D006435:Renal Dialysis; D011795:Surveys and Questionnaires