Quality of life measures for patients on hemodialysis: a review of psychometric properties.

This review describes quality of life (QOL) instruments and evaluates evidence of reliability and validity as obtained from articles where QOL was assessed for patients with end stage renal disease. Articles selected for review were based on the construct of QOL measures for adult patients on hemodialysis (HD). Articles reviewed were in English and published between 1982 and 2007 as identified by searches in Medline, PubMed, Pubmed Central, SCOPUS, and CINAHL. Key words included adults, hemodialysis, ESRD, reliability, validity, QOL measures, QOL instruments, and health-related QOL instruments. Of the 146 articles meeting the inclusion criteria, 80 were reviewed. Of these, 38 articles were observational studies, and 34 QOL measures were identified. Analysis permitted sorting the instruments as generic measures (59%), patient-preference measures (15%), and disease-specific measures (26%). Studies using the most commonly used disease-specific instrument, the Kidney Disease Quality of Life Short Form (KDQOL-SF), reported minimal psychometric testing. Within the HD population, multidimensional QOL instruments that are adequately tested, reliable, and valid are needed. Since reliability and validity may vary from one group of participants to another or from one disease population to another, it is beneficial for researchers to take the time and effort to establish psychometric properties for their QOL instruments.

Frequency, severity, and distress of dialysis-related symptoms reported by patients on hemodialysis.

The purpose of this study was to determine which symptoms are the most reported occur most frequently, have the greatest severity, and cause the most bother for patients on hemodialysis (HD), and to determine if the symptoms experienced differ between the first (HD1) and second (HD2) treatments of the week. An observational, comparative design was used to determine participants' HD symptoms experienced on HD1 and HD2, and the effect of the symptom experience on quality of life (QOL). One hundred subjects were recruited from five dialysis centers. The adapted Dialysis Frequency, Severity, and Symptom Burden Index (DFSSBI) and the Medical Outcomes Study Short Form 36 (MOS SF 36) were administered (N = 99) on HD1 and the DFSSBI again on HD2. Data were analyzed for significance among symptom experience test scores in relation to HD1 and HD2, QOL, and gender and age. Of 31 symptoms assessed respondents reported an average of 9.77 symptoms on HD1 and 7.51 symptoms on HD2. Overall, more symptoms were reported and were more frequent, severe, and bothersome on HD1 when the level of metabolic waste is highest. The most reported symptoms included tiredness, dry skin, difficulty falling asleep, itching, numbness/tingling, difficulty staying asleep, decreased interest in sex, and bone/joint pain. Females scored consistently higher than males in the four symptom dimensions. Respondents reported about the same as the population norm (50) on the physical component summary score of the MOS SF 36 and higher than the norm (65.23) on the mental component summary score. The study found patients on HD experience multiple symptoms that can be frequent, severe, and bothersome. Interventions should be developed and tested to reduce symptom bother and improve QOL.