Understanding Palliative Care and End of Life Needs in the ALS Population: The First Step to Improving Patient and Caregiver Quality of Life

Patient recruitment:

Patients who are eligible for the study will be asked by their ALS care team if they would like to speak to the research assistant about the study. Patients may also self refer if they hear about the study and are interested in learning more about it. As a part of this study, participants will meet briefly with a palliative care (PC) physician to discuss the goals of palliative care and the interventions a palliative care physician can provide. As part of the study, patients will be offered the choice of a palliative care consultation (in a timely manner - either at home or at the ALS clinic) or no palliative care consultation. Participants will fill out a brief questionnaire regarding their interest in a PC consultation. Relevant demographic information such as time since diagnosis and functional ability will be collected for all patients included in the study. This study is planned to recruit patients for the period of one year, with a total study period of 18 months (i.e. the first patient included to the study will be followed until death or for 18 months and the last patient recruited to the study will be followed for 6 months).

Outcome Measures:

All patients who agree to participate in the study, will be asked to complete two scales which measure quality of life: The ALS Specific Quality of Life Revised Scale (ALSSQOL-R,) a validated instrument to measure quality of life in ALS patients (8, 15) and the Hospital Anxiety and Depression Scale (HADS), a validated instrument for measuring anxiety and depression in patients and caregivers(16). These scales will be completed at baseline, 1 month, 3 months and every 3 months for the entirety of the study period. Caregivers will complete the HADS at the same time interval. The ALSSQOL-R and HADS require 10-20 minutes and 2-5 minutes to complete, respectively (15, 17). The ALSSQOL-R is routinely used as pre-visit screening in multidisciplinary ALS clinics and is felt to be feasible in the ALS population(15). The invitation to the study and coordination of survey completion will be led by a research assistant and not a member of the patient's care team. Survey completion rates and feasibility of routine completion will be examined. Qualitative reasons for declining a PC consult at the time of study initiation, as reported by patients on the consent to PC consultation questionnaire, will also be recorded.

Patients and caregivers who receive a PC consult as a part of the study period will complete a questionnaire focusing on their satisfaction with the consultation, its timeliness (i.e. too early or too late in their illness trajectory) and any fatigue or distress which resulted from the consultation. Follow-up PC assessments will occur as determined by the patient and PC physician. Patients and caregivers who decline participation in the study as well as those who are included in the study but declined PC consultation will continue with usual care and thus be referred to a PC specialist at the discretion of their physicians. A detailed overview of the plan for study recruitment and planned outcome measures are outlined in Figure 1 and Table 1.