Understanding palliative care and end-of-life needs in the ALS population: The first step to improving patient and caregiver quality of life

Currently, there is no cure for ALS. It is a progressive disease that has an average life expectancy of two to five years after diagnosis.

Palliative care is an area of medicine aimed at improving the quality of life of patients and their families facing the problems associated with a life-threatening illness. These consultations can provide increased psychological support, assistance with advanced care planning and information on end-of-life symptoms and care. Typically, palliative care physicians are not involved as part of routine multidisciplinary care until later in the disease, or in some cases, not at all.

With this grant, Dr. Jocelyn Zwicker and Dr. Christine Watt will identify palliative needs and study the impact of offering earlier palliative care to individuals with ALS and their caregivers. The researchers will measure the benefits of palliative care by asking participants to complete surveys about their quality of life and mood at the time of the initial consultation, and then one month, three months and every three months after that. The surveys include the ALS-Specific Quality of Life Scale-Revised (ALSSQOL-R) and the Hospital Anxiety and Depression Scale (HADS). Individuals with ALS and their caregivers who decline early palliative care will have the opportunity to receive it at a later time.

The research team includes Dr. Usha Buenger, Dr. Ariel Breiner, Dr. Jill Rice, and Susan McNeely, RN at The Ottawa Hospital. In addition to assessing the feasibility and impact of providing earlier palliative care, the researchers also hope to identify the timeframe when people with ALS and their caregivers are most likely to benefit, and how to recognize individuals who may benefit from earlier consultation.