A burden questionnaire for caregivers of peritoneal dialysis patients

INTRODUCTION: Despite the interest generated by the increasing number of studies that measure Quality of Life among patients and caregivers, few of these studies measure the caregivers burden in Peritoneal Dialysis (PD). OBJECTIVE: The main target of this study was to create a burden measure questionnaire applicable amongst caregivers of PD patients. INCLUSION CRITERIA: 1) Patients had to be in PD treatment for more than 3 months; 2) Patients had to receive help with the PD treatment from a caregiver. The study was divided into 3 phases: 1st) design and use of the initial questionnaire; 2nd) a test-retest on a modified scale; and 3rd) to provide the questionnaire-3 to two collaborative centres with similar PD programs. Four groups of caregivers were established: A1:23, A2:17, B:7 and C:16 caregivers. We applied 5 scales (5): 1--Patient Dependence on caregiver, from caregivers' view (D); 2--Complete caregiver burden (CB), including 12 items which measure the caregivers' subjective burden, 3--Reduced caregiver burden (RB), as the one before but with only 8 items, 4--Repercussions on the caregiver (R), which measures objective burden; 5--Specific PD tasks (ST), a scale that measures the effort the tasks implied in the PD treatment represent for the caregiver. RESULTS: We studied 63 caregivers (table I): mean age: 53.43 (SD = 12.3); Sex: Females: 86.4%, Males: 13.6%, corresponding to 63 patients: mean age: 59.79 (SD = 15.9); Sex: Males: 80.3%, Females: 19.7%. Valuable results for reliability, unidimensionality, and discrimination were obtained in the 1st and 2nd phases, except for burden scale which was compound of two factors; then one of those factors was suppressed. In the 3rd phase, ANOVA did not show any differences between centres (table II). Consequently, all caregivers could be analysed together. Reliability results for each one of the third phase scales (table III) were: D: Cronbach alpha = 0,886; CB: alpha = 0,894; RB: alpha = 0,857; R: alpha = 0,892; ST: alpha = 0,62. Although the ST scale obtained an acceptable reliability, it was suppressed in the 3rd phase due to the low correlation with other scales and the fact that it was not applicable to all caregivers. Finally, a direct correlation was found between third phase scales (table IV): D-RB: r = 0.502, p < or = 0.001; D-R: r = 0.599, p < or = 0.001; RB-R: r = 0.775, p < or = 0.001. We must headlight that both Burden scales, and the Repercussion scale, obtained a direct correlation with the Dependency scale. CONCLUSION: A questionnaire has been created to measure burden and repercussions on caregivers of peritoneal dialysis patients. It can already be applied, as requirements of both reliability and validity are fulfilled. This questionnaire can be a useful tool to prevent caregivers' burnout.