부산대학교 도서관

1. Participants will be able to recognize the disparities that exist in the availability of outcomes data on feeding tube placement for diverse patient populations, including adults with childhood onset neurologic impairment. 2. Using a case-based approach, participants will be able to identify the impact of a lack of outcomes data on the ability to counsel patients in their decisions around feeding tube placement. Adult patients with childhood onset neurologic impairment are underrepresented in the medical literature, including in studies on outcomes of medical interventions like feeding tube placement. Further research and increasing inclusion would allow for a better informed approach to counseling such patients and assessing the impact of medical interventions on quality of life. Patients with childhood onset neurologic conditions who have transitioned to adulthood constitute a population with unique healthcare needs. This case presents one such patient who faced decision-making about feeding tube placement. We have robust outcomes data for feeding tubes in older adults with advanced dementia, but similar data are lacking to inform the counseling and anticipatory guidance we provide patients like this one. A woman in her 40s with tuberous sclerosis, complicated by seizures and hydrocephalus, was admitted with weight loss and dehydration. She was nonspeaking and used a wheelchair. Per caregivers her voluntary PO intake had gradually declined over months. There were no concerns for aspiration. On admission she appeared malnourished, and basic workup revealed no identifiable acute cause for her declining PO intake. Palliative care was consulted for discussion of goals around feeding tube placement. The patient's legal guardian, her outpatient primary care provider, a sibling, and a paid caregiver from her home were all involved. They indicated the patient was experiencing a years-long slow functional decline. The medical team therefore counseled that her decreased PO intake may indicate disease progression not reversible by feeding tube, such as we see in patients with dementia. The caregivers shared she was otherwise receiving care to meet her increasing needs and continued to enjoy good quality of life. Ultimately the decision was made to proceed with g-tube placement. Adults with childhood onset diseases are a heterogeneous population, and we lack specific data on many of their health outcomes to guide decision-making around potentially life-changing interventions like feeding tube placement. Until we achieve better inclusion for this population in the medical literature, we can engage the various involved caregivers to inform our perspective on quality of life, particularly for nonspeaking patients who may not verbally communicate their wishes. Shared Decision Making / Advance Care Planning; Patient Outcomes [ABSTRACT FROM AUTHOR]