Introduction: The bereaved caregiver provides an important perspective into the ALS palliative
care experience, having been intimately involved with the care of their loved one. Existing
survey tools focus on the inpatient palliative care and nursing needs primarily in the final days of
life, which don’t fully capture the experience of a majority of ALS patients who are often
connected to outpatient palliative care for a longer period of time. A comprehensive survey
providing space for bereaved caregivers to reflect on the care experience is needed to evaluate
the current state of ALS care and identify ways to continue improving care for future ALS
patients and caregivers.
Aims: To develop a survey for bereaved caregivers of deceased ALS patients to better understand
the impact that palliative care can have on patients and caregivers with a focus on improving the
quality of care.
Project Design/Methods: We developed a semi-structured interview guide using a modified
Delphi method with input from a multidisciplinary and multi-institutional panel of 13 ALS and
palliative care experts. The expert panel included physicians, nurses, chaplains, and caregivers
from 4 separate institutions/organizations. The expert panel met 2 times to collectively
brainstorm domains and questions. The discussion items were then refined asynchronously
through 2 iterative Qualtrics surveys. The resulting survey was then piloted in the form of phone
interviews with three bereaved caregivers connected through the local ALS patient family
advisory council for evaluation of the survey questions clarity, appropriateness, and length.
Results/Product: Three overarching domains emerged as the most important aspects of the ALS
patient care experience including patient and caregiver support, communication, and the end of
life experience. The patient and caregiver support domain is multifaceted, including physical
comfort, emotional support, spiritual support, and practical assistance. The communication
domain includes disease information, preparation for what was to come, and alignment with
values and preferences. The end-of-life domain includes the patient’s end of life care choices and
bereavement care. The final survey includes 31-items, 9 items of which are demographics.
During the pilot, three bereaved ALS caregivers independently agreed that the survey is
comprehensive, relevant, and an appropriate length.
Discussion/Conclusion: The purpose of this study was to develop a survey to capture the ALS
palliative care experience with the aim of improving future care. Through a modified Delphi
process with field experts, iterative revisions, and piloting, we created a comprehensive 31-item
interview guide. This survey specifically captures the bereaved caregiver’s perspective of ALS
care and explores topics missing in existing survey studies around palliative care in ALS.
Study limitations include the small sample size of the pilot participants, which may
introduce undue variability or bias. However, the high degree of agreement among the bereaved
caregivers suggests reliability in the responses. Additionally, this survey is currently being
administered to a larger group described in the next steps. Another limitation of this study is that
exploring the care experience from the bereaved caregiver perspective can introduce recall bias
depending on the time since the passing of their loved one. For this reason, our inclusion criteria
for survey participants is limited to 3-12 months after the death of their loved one with ALS.
We are in the process of administering this survey with a goal of at least 15 bereaved
ALS caregivers to reach thematic saturation. The phone interviews are recorded and will be
transcribed and analyzed by our research team. The next step of this study aims to translate our
findings to improve the quality of care for future ALS patients and caregivers.