Background: Although definitions of palliative care include quality of life as a central concern,
little research has been published about both the quality of life of patients with advanced
illness and their family members, and particularly the changes in their quality of life
over time.
Objectives: The aims of this prospective longitudinal pilot study were to: (1) establish the
reliability of multidimensional quality of life instruments based on patients with acquired
immune deficiency syndrome (AIDS) and patients with cancer and caregivers; (2) identify
differences in quality of life between patients with advanced AIDS and cancer, and their family
caregivers with consideration of mortality, attrition, and compliance rates; and (3) examine
differences in demographic variables and their potential confounding effect when measuring
quality of life.
Methods: The sample included 101 patients with advanced illness (63 patients with advanced
AIDS and 38 with advanced cancer) and 81 family caregivers (43 caregivers for patients
with AIDS and 38 caregivers for patients with cancer). Data collection involved the
monthly completion of the McGill Quality of Life Questionnaire (MQOL) for patients, and
the Quality of Life Scale (QLS) for family caregivers.
Results: Reliability of the MQOL and QLS were established for patients with AIDS and
patients with cancer and caregivers. Based on the MQOL, patients with advanced AIDS reported
a lower total quality of life, and lower psychological quality of life, and a higher physical
quality of life compared to patients with advanced cancer. There were no significant
differences between patient groups on the one-item physical well-being subscale, or the existential
well-being, and support subscales. Based on the QLS, AIDS caregivers reported
greater overall quality of life, greater psychological well-being, and greater spiritual well-be- ing than cancer caregivers. There were no significant differences between AIDS and cancer
caregivers with respect to physical or social well-being. From baseline entry into the study to
third month of participation, there were no significant changes in total quality of life scores
for patient or caregiver groups, although trends indicated a moderately high total quality of
life over time for all patient and caregiver groups. Fourteen of 63 (22%) patients with AIDS
patients died, while 19 of 38 (50%) patients with advanced cancer died after enrollment. Fortysix
of 63 (73%) patients with advanced AIDS withdrew for various reasons other than death
at some point during the 12 month time frame of the study, while 15 of 38 (39%) patients with
advanced cancer withdrew. There were significant differences on all demographic variables
for patients with advanced cancer and AIDS. Only religious affiliation was significantly related
to quality of life for patients with AIDS, while gender was the only variable associated
with quality of life for patients with cancer. There were significant differences on all demographic
variables between caregivers with the exception of gender and living arrangements.
Only the relationship between patients and caregivers and marital status were significantly
associated with quality of life for cancer caregivers.
Conclusions: In palliative care research, the challenge is to design studies that will capture
changes in the domains of quality of life over time, yet will minimize participant burden and
subsequent attrition rates. By measuring quality of life as an outcome variable in palliative
care, health professionals can identify changes in the domains of quality of life over time for
various patient populations and their family caregivers, and respond with appropriate interventions,
which promote or maintain their quality of life even as death approaches.
