Resilient Together ALS
Approximately 31,000 people in the United States are living with Amyotrophic Lateral Sclerosis (ALS), a progressive neurodegenerative disease (NDD) that leads to loss of motor control, difficulty swallowing, paralyses, respiratory failure, and death. ALS is associated with substantial emotional distress after diagnoses, and this is interdependent between patients and care-partners (together called dyads). Untreated emotional distress is associated with more rapid deterioration in ALS and poor quality of life in dyads. People with ALS and their care-partners also identify existential needs and distress, and exploring spiritual needs, beliefs, and meaning is important in the context of terminal illness. Combining psychosocial and spirituality skills as part of a palliative dyadic intervention delivered early after an ALS diagnosis is as an unexplored opportunity to prevent chronic emotional distress and improve the lived experience in both members of the dyad. My Kornfeld proposal aims to develop and refine a dyadic palliative psychosocial and spiritual intervention to prevent chronic emotional distress: “Resilient Together ALS (RT-ALS).” RT-ALS is based on an evidence based dyadic resiliency intervention developed by my primary mentor for patient care-partner dyads in the Neuro-ICU (“Recovering Together;” RT), and the Framework for early dyadic interventions for NDDs. The proposed study has two Specific Aims: 1: Develop RT-ALS with stakeholder input using dyadic qualitative semi-structured interviews (<20 dyads until saturation) and focus groups (3-4; <20 staff total until saturation) with interdisciplinary ALS providers; 2: Optimize RT-ALS via a single-arm open pilot (N=10 dyads) with exit interviews and pre-post assessments. My Kornfeld will inform a K23 pilot feasibility RCT. Long-term (future R01), I hypothesize that RT-ALS will significantly improve patient, care-partner, and dyadic emotional distress (primary outcome) QOL (secondary outcome) and existential well-being (exploratory outcome). If successful, RT-ALS can be disseminated as a new and improved standard of care for people with ALS and their carepartners worldwide.
Christina Rush, PhD, is a clinical health
psychologist with the Center for Health Outcomes and Interdisciplinary
Research (CHOIR) at Massachusetts General Hospital/Harvard Medical School
(MGH/HMS). She completed pre-doctoral internship (health psychology track) at
the VA Maryland Healthcare System/University of Maryland School of Medicine
Consortium and doctoral training in clinical health psychology at the
University of Colorado Denver. At CHOIR, Dr. Rush is the lead clinician
on the Recovering Together clinical trial building resiliency and improving
emotional distress in neurocritical care patients and their informal
Rush’s research explores the intersection of mind-body medicine, religion and
spirituality, and health and well-being. She is leveraging
this along with resources and partnerships at CHOIR/MGH/HMS to develop dyadic
interventions informed by the biopsychosocial spiritual model for patients with
ALS and their loved ones.