236732 Caregiver burden affects the quality of life of ALS patients and their caregivers

Wednesday, November 2, 2011: 11:24 AM

Richard Kimball Jr., MSN/MPH, PhD, PHCNS-BC , School of Nursing Department of Acute and Chronic Care, Johns Hopkins University, Baltimore, MD
Adults with Amyotrophic Lateral Sclerosis die within three to five years of onset. ALS leaves patients progressively disabled affecting all voluntary muscles including muscles to walk, move their arms, speak, and breathe- leading to respiratory distress and death. Patients become dependent on caregivers for all activities of daily living like eating, dressing and toileting. This leads to high caregiver burden and lower reported quality of life (QOL) for patients and their caregivers. This study examined the relationship between caregiver burden and QOL for patients and their caregivers. Primary data collection with a cross sectional sample of 104 patients and their caregivers was completed in a tertiary care facility. A multivariate analysis examined the association between 21 patient and 17 caregiver characteristics and their QOL. The model for caregivers showed better QOL was associated with less caregiver burden, more years caregiving, better mental status, higher socio-economic status and public insurance (adjusted R-squared 0.35). The model for patients showed caregiver burden as insignificant with patients' QOL. However, for patients more spirituality, better mental status, better physical functioning and more hours of paid caregiving were positively associated with better QOL, while more hours of informal (unpaid) caregiving were negatively associated with QOL (adjusted R-squared 0.52). The findings of this study suggest that caregivers' QOL may be improved by improving mental status, providing more resources and providing more education about caregiving. Patients' QOL may be improved by supporting their informal and formal (paid) caregivers, increasing spirituality resources and improving mental status.

Learning Areas:
Assessment of individual and community needs for health education
Planning of health education strategies, interventions, and programs
Public health or related research

Learning Objectives:
1. Identify 5 significant factors that affect quality of life in patients, in the neuro-degenerative disease ALS. 2. Identify 5 significant factors that affect quality of life in caregivers, in the neuro-degenerative disease ALS. 3. Describe 6 areas for future intervention to improve caregiver and patient quality of life.

Keywords: Caregivers, Disability

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I was the principal investigator on this study as a clinical nurse in the ALS Clinic here at Johns Hopkins, therefore I am qualified to present this data. After seeing effective nursing interventions in infection control and women’s health programs during my service overseas, I decided to become a nurse. I am a board certified advanced practice nurse in public health and help manage over 200 ALS patients and their families. I also serve as a board member (and I am a founding member) of The Truth About Nursing and its predecessor The Center for Nursing Advocacy.
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.