Neurocritical Care Resource Utilization in Pandemics: A Statement by the Neurocritical Care Society

Neurocritical Care -     

Lessons from an Experiential Approach to Patient Community Engagement in Rare Disease

Meaningful engagement between biopharmaceutical companies and patient communities has increasingly become an important part of the therapeutic-development process, as such engagement improves the understanding of the multifaceted challenges and unmet needs that communities experience and provides an opportunity to inform the approach to the development of new therapies and services. Presented here are learnings from a community-advisor program designed to engage families of patients with Duchenne muscular dystrophy (DMD) in a manner that enabled caregivers to make valuable contributions to the therapeutic-development process and to the DMD community. Parents of children with DMD, representing the broader DMD community, were identified in partnership with patient-advocacy organizations and invited to participate in a community-advisor meeting with members of Wave Life Sciences. The community-advisor meeting was designed to provide participants with an opportunity to share their personal experiences with DMD, to help to inform the therapeutic-development process, and to identify potential solutions for addressing unmet needs. Three community-advisor meetings were held with a total of 30 parents, representing 36 children with DMD. Key themes that emerged from the advisors' discussion included the importance of the community's emotional and mental support, the inconsistencies in DMD care, the increased challenges and disparities faced by underserved communities, and the need for more comprehensive, holistic approaches to the treatment and management of DMD. The advisors viewed the meetings as an opportunity to share their voices with a biopharmaceutical company, coupled with the advantage of meeting other families living with similar challenges. Most of the advisors stated that this was their first advisor meeting. This community-focused approach empowered participants to voice their needs and perspectives, to brainstorm potential solutions for addressing those needs, and to initiate and foster connections in ways that had a considerable impact on one another and on therapeutic-development programs at Wave Life Sciences.     

A Qualitative Assessment of Community Attitudes and Barriers to Family Planning Use in the Trifinio Region of Southwest Guatemala

Introduction Our aim was to identify beliefs about and specific barriers to use of birth spacing methods that married and cohabitating women in the Trifinio Sur-Oeste region of Guatemala report in order to design future family planning educational programs. Methods We conducted key informant interviews with community health workers and focus groups with married or cohabitating women. We used inductive and deductive coding to identify common themes. Using these themes, we created explanatory models for decision-making context and identified barriers to family planning use, community educational needs, and potential interventions. Results Thirty-seven women, aged 20–47 years, with an average of 3.5 children and a 2nd grade education level, were included in focus groups. Women had accurate knowledge about benefits of birth spacing however had poor knowledge of family planning methods. Most common barriers included lack of spousal approval, difficulty accessing contraceptive methods, lack of knowledge, and fear of adverse effects. Women were interested in increased education for men, adolescents, and themselves. Discussion Targeted education for women, men, and adolescents is needed to improve family planning uptake in the Trifinio region. Programming should focus on increasing knowledge and acceptability of birth spacing methods and increasing constructive dialogue among couples.     

Dental treatment improves self-rated oral health in homeless veterans--a brief communication

OBJECTIVE: The aim of this study was to assess homeless veterans' perception of their oral health and the impact that oral disease and treatment have on self-assessed quality of life. METHODS: Outcomes included measures of general and oral-specific quality of life and functional status. Single-item self-report of oral health and the General Oral Health Assessment Index were assessed at baseline and after treatment. RESULTS: One hundred and twelve veterans completed the baseline questionnaire, and 48 completed the follow-up. Veterans who were eligible for ongoing dental care had improved General Oral Health Assessment scores, while patients who received only emergency dental care saw a decreased score (2.46 versus -2.12). General Oral Health Assessment improvement was significantly related to fewer teeth at baseline (18 versus 23), a lower baseline General Oral Health Assessment (23.6 versus 28.1), having a denture visit (22 versus 35 percent), and improvement in self-reported oral health (25 versus 42 percent). CONCLUSION: There was significant improvement in homeless veterans'perceived oral health after receiving dental care.     

Recommendations for the safe,effective use of adaptive CDS in the US healthcare system: an AMIA position paper

The development and implementation of clinical decision support (CDS) that trains itself and adapts its algorithms based on new data—here referred to as Adaptive CDS—present unique challenges and considerations. Although Adaptive CDS represents an expected progression from earlier work, the activities needed to appropriately manage and support the establishment and evolution of Adaptive CDS require new, coordinated initiatives and oversight that do not currently exist. In this AMIA position paper, the authors describe current and emerging challenges to the safe use of Adaptive CDS and lay out recommendations for the effective management and monitoring of Adaptive CDS.     

Potentially Inappropriate Medication Use is Associated with Clinical Outcomes in Critically Ill Elderly Patients with Neurological Injury

Background

Limited data suggest that potentially inappropriate medications (PIMs) impact outcomes in critically ill elderly patients. No data are available on the association between PIM use as well as drug burden index (DBI), which is a measure of PIM use, and clinical outcomes in neurocritical care elderly patients. This study evaluates whether PIM use and a higher DBI are associated with poor clinical outcomes in neurocritical care elderly patients.

Methods

PIMs were retrospectively identified in critically ill elderly patients admitted to the neuroscience intensive care unit (NSICU) from March to July 2011. DBI was calculated based on PIM doses. Relationships with clinical outcomes were evaluated.

Results

PIMs were prescribed to a majority (81.3 %) of the 112 patients. Opioids were most commonly associated with a decrease in Richmond Agitation Sedation Scale (RASS) scores (56 % of PIM doses). Time to recovery was significantly longer in patients with a higher PIM burden (≤2 PIMs: 8 h, >2 PIMs: 29 h; p = 0.02). There was a significantly longer NSICU and hospital length of stay (9 vs 2; 15 vs 5 days; p < 0.0001) as well as a lower Glasgow Coma Scale score upon discharge (14 vs 15, p = 0.02) in patients with a higher DBI after 72 h of hospitalization. There was no difference in mortality.

Conclusions

PIM use and higher DBI scores were associated with poor clinical outcomes and longer lengths of stay. Further studies are needed to determine the impact of PIMs and DBI on mortality in neurocritical care elderly patients.