Caring Wisely FY 2023 Project Contest

Increasing Access to Equitable Care Among Medically Hospitalized Youth with Eating Disorders

Proposal Status: 

PROJECT LEAD(S): Sarah Forsberg, PsyD

EXECUTIVE SPONSOR(S): Stephen Wilson, MD, PhD

ABSTRACT 

Research and clinical trends at UCSF indicate gaps in health equity among youth diagnosed with eating disorders (EDs) who are publicly-insured or whose primary language is not English. Disparities in quality and access to care have increased during COVID-19; rising ED rates and medical severity have led to a higher hospital census and readmission rates nationally and at UCSF (with a four-fold increase in average daily census). Obstacles to equitable care include more limited resources for those who speak a language other than English, and lack of access to evidence-based treatments due to insurance barriers and lengthy waitlists. This is particularly concerning as anorexia nervosa has one of the highest mortality rates among psychiatric disorders. The gold standard treatment for youth with EDs is Family-Based Treatment (FBT), which is the treatment provided at UCSF to those with private insurance. FBT demonstrates higher rates of remission and lower cost to the individual and healthcare system (i.e., reduced hospital admissions, shorter treatment duration) compared to other treatments. Our team’s priority is to increase access to evidence-based care for all patients and families. As such, we aim to create and disseminate educational videos on FBT to patients, families, and allied health professionals to increase awareness, skills, and confidence to facilitate recovery at home. Second, we will ensure that all patients and families have access to written materials including After Visit Summaries in their spoken language upon discharge. Implementing this programming is feasible, scalable and has the potential to reduce rate of hospital readmissions, length of stay, and allow providers to reallocate time to direct patient care.

TEAM: Sarah Forsberg, PsyD, Rachel Kramer, PhD, Lisa Hail, PhD, Sharon Clifton, RN, Beth Saunders, RD, Sara Buckelew, MD, Molly Koren, LCSW, Lisbeth Chang, LCSW, Amanda Downey, MD, Erin Accurso, PhD

PROBLEM 

Eating Disorders (EDs) are associated with significant burden to the individual and caregivers, healthcare costs that are substantially higher than the general population, with the degree of disability and mortality risk equivalent to the pooled risk of various mental health disorders1. Elevated suicide risk and serious medical consequences lead to 77,000 hospitalizations and emergency department visits and 10,000 deaths yearly, with annual costs of $65 billion in health care expenditures, informal care, and lost productivity and efficiency.2 Waitlists for treatment have grown,3 rates of new ED onset,4 hospital admission and readmission have increased significantly during the COVID-19 era5 further burdening the system and exacerbating what is already an often-prolonged health condition.6 Inequitable access to specialized care has been longstanding—even prior to increased demands on the healthcare system—most heavily impacting individuals who are the most under-resourced, specifically publicly-insured7 youth of color, many of whose family members do not speak English. The UCSF Eating Disorders Program (EDP) provides critical inpatient medical services for many acutely ill adolescents insured by Medi-Cal who are often unable to access life-saving outpatient psychiatric treatment due to insurance barriers.

 Family-Based Treatment (FBT) is the first-line, gold-standard treatment for adolescent and young adult EDs, but the wait time to access FBT or specialized ED treatment is unacceptable. Typically, adolescents with private insurance wait for outpatient care following hospitalization for an average of 4-6 months. The wait is closer to 9 months for publicly-funded community-based services. The gap in care for adolescents insured by Medi-Cal whose caregivers do not speak English is even greater due to the absence of specialty care in most publicly-funded mental healthcare settings, such that providers are unable to refer these patients for appropriate follow-up care. In addition, these families do not have access to psychoeducational materials or discharge instructions in their preferred language, which may contribute to poorer treatment outcomes and increased caregiver burden. Further, compared with other medical and psychological concerns, ED treatment is more costly for Medicare patients8 and publicly-insured youth, who are more likely to be readmitted for psychiatric concerns than privately-insured youth9. It is imperative to address these inequities immediately to reduce rates of hospital readmission, cost to families and healthcare systems, and to reduce disparities in treatment outcomes.

TARGET 

The goal of this grant is two-fold. The most immediate aim is to improve equitable access to evidence-based resources to patients and families, with particular attention to publicly-insured youth with EDs given that treatment efficacy is reduced in this demographic group,7 and thereby reduce rate of hospital readmission and length of stay.4,5,9 These resources will specifically target caregiver self-efficacy by increasing knowledge and confidence, which is an established mediator of outcome in FBT.

Second, we aim to disseminate education to community physicians and other healthcare providers to improve identification, early intervention, and delivery of evidence-informed care. As such, this effort has the potential to reduce costs more broadly to families and the healthcare system by improving the timeliness and efficacy of interventions to prevent more severe outcomes and related hospitalization. 

GAPS 

There are several reasons for more frequent readmission and greater costs of care among youth diagnosed with ED with public insurance. The first being limited outpatient treatment options after discharge, as noted above. During the COVID-19 pandemic, the UCSF Adolescent Medicine Service experienced a four-fold increase in its average daily census.3 Given the UCSF-BCH system has also been exceedingly taxed by COVID-19 and other respiratory and influenza-related admissions, our capacity to provide care to all patients in need is limited, and our team has had to turn away individuals who meet our admission criteria, many of whom are eventually hospitalized with a higher degree of medical acuity, resulting in extended length of admission. This pressure on the healthcare system taxes providers who are unable to provide the same level of care due to an imbalance between resources and demand. These factors have the potential to impact those who are already the most under-resourced, for example, use of interpreters, may result in less thorough information provided, providers may have less time to ensure all caregivers are present when psychoeducation is provided, and less time to advocate for treatment and coordinate care. In addition, discharge planning is hindered for families who do not speak English because After Visit Summaries are not translated, as they are for the hospitalist services, and educational materials are more limited.10 As such, the system does not provide as many resources to youth who are already less likely to be discharged with appropriate and timely treatment referrals. Many of these individuals will continue to follow with PCPs in the community who have generally received very little training in the management of EDs, a trend that is observed in our care coordination. Given the importance of close medical monitoring, accurate education about weight restoration, and unique nutritional needs to promote reversal of dangerous vital sign abnormalities, it is paramount that providers are informed on best practices in care. Our team provides frequent consultation to community providers, a service that is highly valued but further diverts already limited resources from direct patient care.

INTERVENTION 

This intervention is intended to improve quality of care for patients and families who are admitted to the Benioff Children’s Hospital Adolescent Medicine Service for treatment of medical complications of ED. While medically admitted, youth with ED are treated through collaborative care by Adolescent Medicine attendings, fellows, and residents, psychologists, social workers, dieticians, nurses, and PCAs. The team works to achieve medical stability for patients, establish interdisciplinary care (medical and psychological) post-discharge in line with evidence-based recommendations, and provide psychological support and an introduction to FBT during admission. Given limitations noted above, we will create educational videos in the languages most commonly spoken by our patient population. These videos will target identified mediators of treatment outcome in FBT, including reducing caregiver expressed emotion, increasing caregiver self-efficacy, targeting early weight gain/nutritional needs, and medical monitoring.  Funding will also support development of handouts, and translation of discharge summaries in the spoken language of families. PCPs will have access to all of these materials, in addition to a brief video tailored towards understanding the role of the PCP in FBT, and guidance on the medical management of EDs. Previous research indicates that educational videos for families admitted for a variety of medical concerns reduce readmission rates11–13 and are easily scalable to institutional, and community learners.12 We believe that there will be limited adverse outcomes related to introducing this intervention as it is an adjunct to routine care and will facilitate greater understanding in a scalable fashion. However, translation and transcription errors can occur and impact quality of care, with careful attention to cultural considerations. To minimize risk, we will establish a diverse patient and family community advisory board, integrating the wisdom of key stakeholders in the development and evaluation of video and written materials. We will also work closely with Interpreting Services and other UCSF partners to ensure accuracy of these materials prior to dissemination. Lastly, we will obtain quantitative and qualitative data on perceived acceptability, usefulness, and effectiveness after dissemination of materials to families receiving care on our unit.

PROPOSED EHR MODIFICATIONS 

The primary EHR modification will involve translation of AVS/discharge summaries. Educational video links will also be embedded with follow-up appointment instructions with a request that families watch these in preparation for their visit.

COST 

Direct baseline costs to the UCSF Health system include the longer average length of stay observed in FY23 (11.3 days) compared to FY22 (10.1 days) (representing an opportunity cost of 1.18 for the FYTD), and relative to national benchmark data. It is possible that these findings reflect downstream effects of the COVID-19 pandemic resulting in increased incidence of EDs alongside limited access to care. Similarly, FY23 is demonstrating a trend towards increased opportunity patient days (a 186% increase for the FYTD), impacting bed availability across the system. We aim to reduce length of stay (by a minimum of 1 day on average) and opportunity patient days to FY22 levels (-13.6%). Further, we anticipate a reduction in laboratory costs due to potential reduction in medical acuity (i.e., risk of electrolyte derangement). Providers will also have more time for direct patient care due to better preparing families and community providers to support continued recovery at home, thus less resources diverted to consultation outside of follow-up visits. Further, all of these changes will have downstream effects on provider burnout related to turnover and reduced clinical hours, which is associated with an annual economic cost of approximately $7,600 per employed physician.14

SUSTAINABILITY 

The development and production of these educational videos is an upfront cost. There is no additional cost for ongoing dissemination. Standard written materials will also be used continuously over time via AVS and MyChart messaging. Portions of the AVS are standard and can be easily translated. Additionally, community-based providers who access these videos will be able to circulate them to colleagues as well as their patients, expanding access to digestible, evidence-based information within UCSF and the broader community. The key process owners will be the clinical team creating and administering the videos initially. Following initial roll-out, these will be embedded in normal workflow and require no provider oversight.

BUDGET 

  1. Video creating/editing: Creation of 5, 3-8 minute animated/white-board videos: $6,500/video x 5 = $32,500, partnering with UCSF video production team
  2. Translation/dubbing of videos: $2,000
  3. Material costs: $1,000 (photocopies, folders, stickers)
  4. Breakfast + lunch for day-long team retreat to generate video content: $40 x 8 attendees = $320
  5. Translation of Written Materials:  $0.20 per page, 3 x 1,500 words in 3 languages = $2,700
  6. Reimbursement for Patient/Family Community Advisory Board: $100 per family x 10 = $1,000
  7. Reimbursement for providing feedback post-intervention for a 5-minute survey on Qualtrics (first 30 families to participate) – $25 Amazon gift-cards x 30 = $750
  8. Translation of Qualtrics Survey: $0.20 per page, x 1000 words, in 3 languages, = $600
  9. Translations of Qualtrics Survey Responses: $0.20 per word x 250 words for 30 families = $1,500

 Total Budget: $42,370

References:

1. van Hoeken D, Hoek HW. Review of the burden of eating disorders: mortality, disability, costs, quality of life, and family burden. Curr Opin Psychiatry. 2020;33(6):521-527. doi:10.1097/YCO.0000000000000641

2. Streatfeild J, Hickson J, Austin SB, et al. Social and economic cost of eating disorders in the United States: Evidence to inform policy action. International Journal of Eating Disorders. 2021;54(5):851-868. doi:10.1002/eat.23486

3. Bruett LD, Forsberg S, Accurso EC, et al. Development of evidence-informed bridge programming to support an increased need for eating disorder services during the COVID-19 pandemic. Journal of Eating Disorders. 2022;10(1):71. doi:10.1186/s40337-022-00590-1

4. Linardon J, Messer M, Rodgers RF, Fuller-Tyszkiewicz M. A systematic scoping review of research on COVID-19 impacts on eating disorders: A critical appraisal of the evidence and recommendations for the field. International Journal of Eating Disorders. 2022;55(1):3-38. doi:10.1002/eat.23640

5. Matthews A, Kramer RA, Peterson CM, Mitan L. Higher admission and rapid readmission rates among medically hospitalized youth with anorexia nervosa/atypical anorexia nervosa during COVID-19. Eating Behaviors. 2021;43:101573. doi:10.1016/j.eatbeh.2021.101573

6. Wonderlich S, Mitchell JE, Crosby RD, et al. Minimizing and treating chronicity in the eating disorders: A clinical overview. International Journal of Eating Disorders. 2012;45(4):467-475. doi:10.1002/eat.20978

7. Moreno R, Buckelew SM, Accurso EC, Raymond-Flesch M. Disparities in access to eating disorders treatment for publicly-insured youth and youth of color: a retrospective cohort study. J Eat Disord. 2023;11(1):10. doi:10.1186/s40337-022-00730-7

8. Presskreischer R, Steinglass JE, Anderson KE. Eating disorders in the U.S. Medicare population. International Journal of Eating Disorders. 2022;55(3):362-371. doi:10.1002/eat.23676

9. Feng JY, Toomey SL, Zaslavsky AM, Nakamura MM, Schuster MA. Readmission After Pediatric Mental Health Admissions. Pediatrics. 2017;140(6):e20171571. doi:10.1542/peds.2017-1571

10. Villalobos BT, Bridges AJ, Anastasia EA, Ojeda CA, Hernandez Rodriguez J, Gomez D. Effects of language concordance and interpreter use on therapeutic alliance in Spanish-speaking integrated behavioral health care patients. Psychological Services. 2016;13:49-59. doi:10.1037/ser0000051

11. Tanguturi VK, Temin E, Yeh RW, et al. Clinical Interventions to Reduce Preventable Hospital Readmission After Percutaneous Coronary Intervention. Circulation: Cardiovascular Quality and Outcomes. 2016;9(5):600-604. doi:10.1161/CIRCOUTCOMES.116.003086

12. Ganguli I, Sikora C, Nestor B, et al. A Scalable Program for Customized Patient Education Videos. The Joint Commission Journal on Quality and Patient Safety. 2017;43(11):606-610. doi:10.1016/j.jcjq.2017.05.009

13. Frydenberg A, Oborne N, Polley C, Littlejohn E, Gray A. Paediatric asthma education: Implementation of video-based education for families. Journal of Paediatrics and Child Health. 2022;58(5):868-872. doi:10.1111/jpc.15862

14. Han S, Shanafelt TD, Sinsky CA, et al. Estimating the Attributable Cost of Physician Burnout in the United States. Ann Intern Med. 2019;170(11):784-790. doi:10.7326/M18-1422

Comments

This work is incredibly important. So many patients fall through the cracks of medical care because of inequitable access to services and public insurance limitations. I think developing these materials will be a huge step in bridging the gap for these kids. 

These videos would be such a fantastic resource for our families. They often have questions about how to implement FBT, especially while waiting to be connected to mental health resources. Most of our families do not have time to read books, or the books are only in English and therefore not accessible to an increasing number of families with whom we work. I would love to be able to offer a culturally-appropriate resource to our families!

This proposal epitomizes UCSF’s PRIDE values.  It acknowledges and celebrates the diversity of our patient population, while seeking ways to provide excellent and professional care that tis respectful of the linguistic and cultural differences within our patient population. 

A patient dies in the US of an eating disorder every 52 minutes. While hospitalizations help to stabilize patients, therapy outside of the hospital is what changes the trajectory of their illness and leads to remission. Jumpstarting therapy early with information about FBT approaches and giving families and primary care providers to continue those approaches on an outpatient basis could make a big difference in recovery. 

I see two potential benefits to this study that have not been detailed above. First, this partnership with primary care doctors will help to build our relationships with these referring providers, demonstrating the ways that UCSF can support them in their care of pediatric and young adult patients with chronic illnesses.  I wonder if the team has considered quantitative or qualitative measures of these impacts. Second, I think this could decrease readmission rates and I wonder if there is some way to assess that after this intervention launches.

Amazing and important work!!

I truly can't imagine a more impactful intervention for the severely ill patients with eating disorders served by UCSF. Patients come from all over the state of California and beyond for the Eating Disorders Program's internationally renowned expertise, but then return to their homes with little support, long waitlists, and other significant barriers to accessing care including public insurance and difficulty navigating healthcare/insurance systems due to language barriers. Having access to timely, culturally sensitive, and evidence-based materials in this format will absolutely help to accelerate treatment outcomes on discharge. 

This is an excellent project proposal. As the program lead for the Eating Disorders Program at ZSFG, which treats most of the youth patients with eating disorders and MediCal insurance in SF county, I would be thrilled to see our families provided with additional resources during and after their hospital stay. This would not only reduce treatment costs in the hospital as outlined, but reduce length of time in outpatient therapy as families would already be well-oriented to treatment.