263793 Increased disability negatively affects the QOL and mental health of ALS patients while increasing caregiver burden

Tuesday, October 30, 2012 : 3:29 PM - 3:47 PM

Richard Kimball Jr., MSN/MPH, PHCNS-BC, RN, PhD , College of Nursing, University of New Mexico, Albuquerque, NM
Patients with Amyotrophic Lateral Sclerosis (PALS) die within three to five years of onset and face progressive disability affecting all voluntary muscles including muscles to walk, move their arms, speak, and breathe- leading to respiratory distress and death.

PALS become dependent on caregivers (CGs) for all activities of daily living like eating, dressing and toileting. The literature on ALS shows mixed results concerning how disability affects quality of life (QOL) and mental health of PALS and CGs.

This study looked at disability and its effects on QOL. Primary data collection with a cross sectional sample of 104 PALS and their CGs was completed in a tertiary care facility. Bivariate and multivariate analyses examine the relationship between increasing disability and QOL, mental health and other factors.

Results show PALS report significantly lower QOL with increasing disability. PALS' mental health suffers significantly as well. In a regression analysis, physical disability and mental health are significant factors affecting QOL scores (R-squared 0.52).

CGs of PALS do not show lower QOL with PALS' increasing disability. They do report higher caregiver burden (CGB), more hours spent caregiving, more use of formal (paid) caregivers and poorer mental health. In a regression analysis CGB and mental health scores are significant factors affecting CG QOL (R-squared 0.33).

The findings of this study suggest supporting PALS' QOL should involve areas that improve mental health and support their functional disability. CG QOL improvement should involve improved mental health services and more resources for caring for their progressively more disabled PALS.

Learning Areas:
Other professions or practice related to public health
Planning of health education strategies, interventions, and programs
Program planning
Provision of health care to the public
Public health or related nursing
Public health or related research

Learning Objectives:
1. Identify 2 significant factors that affect quality of life in patients with the neuro-degenerative disease ALS. 2. Identify 2 significant factors that affect quality of life in caregivers of patients with the neuro-degenerative disease ALS. 3. Describe 4 areas for future intervention to improve caregiver and patient quality of life.

Keywords: Disability, Quality of Life

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: Qualified on the content I am responsible for because: I was the principal investigator on this study as a clinical nurse and doctoral candidate in the ALS Clinic at Johns Hopkins, therefore I am qualified to present this data. I have been PI or study coordinator in multiple studies involving quality of life and ALS and am full-time faculty working on research grants in caregiving and quality of life.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.