Contributed by Kimberly Oosterhouse, PhD, RN, CNE, Loyola University Chicago, NIDUS Pilot Grant Awardee
“Kim, I think this is it; she is not responding to me. Can you please come and be with us?” These are the words I woke up to one morning 16 years ago. My distraught grandfather called me from the inpatient rehabilitation room, where my grandmother had been recovering. Upon my arrival, my grandmother had her eyes closed, appearing very peaceful. I greeted her with “Hi Grandma!” and immediately saw her eyebrows raise, though her eyes did not open. This was significant to me, because for my entire life my grandmother always exclaimed “Kim!” her face lighting up in the happiest way whenever she saw me. I knew she was in there.
This was not the first time I had experienced an older adult exhibiting an acute change in their mentation, inattention, and, in my grandmother’s case, level of consciousness. As a critical care nurse in the Medical ICU, I had cared for many patients who seemed to change their personality right before my eyes: a kind older gentleman, who suddenly slapped my face as I placed his meal in front of him; a highly educated woman who started seeing monkeys and was sure we were trying to poison her; an immunocompromised man, whose family thought he had had a stroke. Though they were all being treated for different disease processes and had various underlying conditions, they had one thing in common: manifestations of delirium.
The more I learned about delirium, the more I understood it was occurring with great frequency around me, and often, those individuals had poor health outcomes. Delirium was also being described using many different terms and was frequently incorrectly dismissed as a characteristic of the person’s age. I chose to research delirium prevention, identification, management, and health outcomes in older adults to advocate for my patients and their families.
My dissertation research focused on why critical care nurses were not routinely assessing patients for delirium. Lack of institutional protocol and support, difficulty of assessment and documentation, and lack of healthcare team support and follow through were some of the cited reasons. Progress has been made, but we still have a long way to go.
Since that time, I became affiliated with an institution that has a phenomenal informatics team and an extensive clinical research database. My challenge was that a standardized delirium screening or identification instrument had not been systematically utilized by nurses, so I had access to rich data, but needed a way to find delirium cases. This led to the search for a way to retrospectively screen electronic health records (EHRs) for patients with probable delirium. Through the Network for Investigating Delirium: Unifying Scientists (NIDUS), my team received a Pilot Award. The objective of our NIDUS Pilot Award study is to improve delirium detection in older adult inpatients using natural language processing of the EHR unstructured data. We retrospectively identified EHRs with concept unique identifiers (CUIs) for delirium as defined by the Unified Medical Language Systems Metathesaurus in the unstructured data and are validating the CUIs for delirium. In addition, we are determining the positive and negative predictive values for the delirium CUIs. Our long-term goal is to develop a computable phenotype for delirium using unstructured and structured EHR data that could provide nurses with early clinical decision support for focused assessments, interventions, and management to improve health outcomes of older adults who develop delirium.
I was extremely fortunate to hear about NIDUS and attend the 2018 NIDUS Bootcamp. At the Bootcamp, we received instruction from top experts in delirium research. This was amazing to me, as these extremely busy professionals took ample time getting to know and mentor each of us in attendance. I was able to network with other national and international new investigators and Bootcamp alumni studying delirium from multiple diverse lenses. Areas explored at the Bootcamp included the latest findings in delirium research, ongoing investigations, and new areas in delirium research to be developed. I was able to broaden my understanding of the grant review process through participating in a mock grant review. I received valuable feedback and critique on my mock grant proposal. Most exciting was the energy of being with others who shared my passion for improving health outcomes for those who develop delirium and studying ways to prevent its occurrence. The NIDUS Bootcamp was an inspiring experience.
The NIDUS website has been a wealth of information. The website was where I initially found delirium assessment instruments along with their reported validity, reliability, and instructions for use. Researchers can connect through the NIDUS website by tweet, blog, or email. A recent addition to the NIDUS Hub and Communication Forum allows researchers to collaborate, share databases and banked biospecimens, and search for studies by measures, methodology, populations, or other category of interest. The NIDUS Bibliography provides over 3,000 delirium research publications and is updated monthly. Information on the NIDUS Bootcamp and NIDUS Pilot Awards is also located on the website. The site is extremely well organized, well maintained, and is truly a “goldmine” for delirium resources.
It is gratifying teaching my nursing students about delirium. I often share my clinical and personal stories, like the one I began sharing with you. To continue, when the rounding physician came in to see my grandmother that morning, I advocated for her. I asked if she had been assessed for an infection or metabolic process. As it turned out, she was transferred back to the hospital, where she was treated with intravenous fluids and antibiotics for a urinary tract infection. Within 24 hours, she was her bright cheery self. In December, my grandmother celebrated her 95th birthday. She survived COVID-19, reads historical biographies, thrives on chocolate and great grandchildren (13 with 3 on the way), and can’t wait to continue playing bridge on Mondays with her friends and my mother.