Redesigning Childhood Chronic Illness Care with Youth and Family Partners: Innovations in Integrated Behavioral Health

What if children and families facing chronic medical illnesses had access to high quality, effective, family-centered mental health care?

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Founding Story: Share a story about a key experience or spark that helps the network understand why this project got started or a story about how you became inspired about the potential for this project to succeed.

In 2015, the Cystic Fibrosis Foundation published new care guidelines for the screening and treatment of depression and anxiety in people with cystic fibrosis and their family caregivers. A growing body of research has shown that children and teens with chronic medical illnesses, such as cystic fibrosis, diabetes, and Crohn's Disease, and their family caregivers have 2 to 3 times higher rates of depression, anxiety, and trauma than seen in the general population. Depression, anxiety, and trauma are associated with increased symptoms, diminished quality of life, difficulty sticking to recommended treatments, poor school performance, and negative effects on children's sense of self, agency, and belonging. Despite frequent contact with health care providers, the unique emotional needs of children and adolescents with chronic illness are often left unidentified and untreated.

At Hassenfeld Children’s Hospital (HCH) of New York at NYU Langone, we understand that caring for infants, children, and teenagers is a special privilege. The Sala Institute for Child and Family Centered Care is working in partnership with children, families, and multidisciplinary staff at HCH in redesigning childhood chronic illness care to anticipate the emotional needs of children and families, universally screen for common conditions, such as depression, anxiety, and trauma, and provide integrated, evidenced-based supports and interventions embedded within a new model for comprehensive, holistic care.

Which categories describe you? (the answer will not be public)

  • Asian (for example: Chinese, Filipino, Indian, Vietnamese, Korean, Japanese, Pakistani)

Website

http://nyulangone.org/locations/hassenfeld-childrens-hospital-of-new-york/sala-institute-for-child-family-centered-care

Location: Where is your organization headquartered? [State]

  • New York

Location: Where is your organization headquartered? [City]

New York City

Location: Where is your project primarily creating impact? [State]

  • New York

Location: Where is your project primarily creating impact? [City]

New York City

Problem: What problem is this project trying to address?

The Fink Center for Children's Ambulatory Care at NYU Langone provides care for over 8,000 patients across eight pediatric specialty divisions. Given the national landscape of siloed, fractured medical and mental health care systems, most chronic illness care delivery settings lack the resources, expertise, and infrastructure required to proactively detect and address children and families' mental health needs, coordinate care, and efficiently connect families to community-based services. In the US, only 1 in 5 children with an identified emotional or mental health issue saw a mental health specialist. In New York City alone, 268,743 children ages 5-17 are estimated to have a mental health disorder with treatment slots available to care for only 12% of children in need. Children with chronic medical illness face unique, additional barriers to accessing mental health care.

Integrated behavioral health care (IBHC) embeds mental health capacity in medical settings to improve treatment access and engagement for affected individuals. Chronically ill patients with comorbid mental health issues are 2.5 times more likely to engage in IBHC versus treatment as usual.

We are piloting an intervention to conduct depression, anxiety, and psychosocial risk screening for all adolescent patients with chronic illnesses, such as cystic fibrosis, inflammatory bowel disease, and diabetes, and their family caregivers. Through both quality improvement initiatives and randomized control trials, we are testing the feasibility and effectiveness of providing brief, evidence-based behavioral treatment on-site with facilitated community mental health referrals as needed.

Evidenced-based brief psychotherapies, such as cognitive behavioral therapy (CBT), interpersonal therapy (IPT), and dialectical behavioral therapy (DBT), have been shown to reduce depressive and anxiety symptoms and improve functioning in children and adolescents with chronic illnesses. We are currently testing an integrated brief behavioral therapy (IBBT-4) that is delivered within pediatric chronic illness care to treat anxiety and depression symptoms, improve functioning, and promote treatment engagement. IBBT-4 is a 4-session, chronic illness adaptation of the 8-12 session Integrated Brief Behavior Therapy (IBBT) treatment for youth anxiety and depression, which has been piloted in pediatric primary care settings.

The treatment aims to counteract the central processes of avoidance and withdrawal in anxiety and depression by promoting active engagement and reduction of avoidance. In this approach, the exposure element of anxiety treatment and the behavioral activation element of depression treatment are combined into a single approach called “graded engagement.” The treatment also incorporates psychoeducation about depression and anxiety, training in relaxation and distress tolerance, and problem solving, all of which are common elements of effective treatments for anxiety and depression and in enhancing children's wellbeing.

In our 4-session adaptation (IBBT-4), we deliver only the 4 skill-building sessions and empower and support families and youth to continue treatment autonomously with home practice. Evidence suggests that exposure-based anxiety treatments and behavioral activation-based depression treatments can have positive impacts in as few as 4 sessions. Further evidence indicates that after brief training, parents can successfully lead home implementation of exposure treatment for anxiety with minimal contact with a trained clinician.

Other key features of IBBT-4 include:

1) Youth and Family Partnerships in Research and Quality Improvement: As part of a multi-tiered patient and family engagement strategy, we 1) recruited and trained youth and family partners to join our delivery systems research team, 2) enlisted and integrated feedback from our existing Family Advisory and Youth Advisory Councils, and 3) engaged online discussion forums and social media to help guide and inform the research study design, interventions, and outcome measurement strategy. Youth and family partners contribute unique insights on ways to help children feel valued by their family, school, and community and how to best address the needs of the youth in this specific population.

2) Telemedicine Capacity: We encourage families to attend all sessions in person; however in cases where families cannot be present, we make sessions available through a HIPAA- compliant video conferencing application, or by telephone to decrease barriers to accessing care.

3) Task Shifting to Build Capability: IBBT-4 is delivered by an experienced pediatric social worker. Social workers receive training in the IBBT-4 protocol, and participate in regular supervision with Ph.D. level psychologists. The Fink Center employs 3 full-time social workers and currently no doctoral level mental health specialists. Therefore, the sustained presence and future expansion of mental health treatment capacity requires that treatment is delivered by embedded providers with ongoing support.

Is your model focused on any of the following traditionally underserved communities?

  • Children who are differently abled
  • Religious minorities (non-Christian)
  • Other

Does your model work within any of the following sectors?

  • Child and Family Services
  • Community Development and Empowerment
  • Education
  • Mental Health
  • Other

If you chose "other," please share the sector you work within here:

Children's Healthcare

Year Founded

2014

Project Stage

  • Growth (the pilot has already launched and is starting to expand)

Example: Walk the network through a specific example of what happens when a person or group engages with your solution.

Adolescents with chronic illnesses, such as cystic fibrosis and inflammatory bowel disease are screened for anxiety and depression symptoms using the PHQ-9 and the Screen for Child Anxiety Related Disorders (SCARED) during a routine medical visit within chronic illness care. Individuals who screen positive for depression, anxiety or psychosocial risk complete an iPad-based full diagnostic assessment. Teens meeting inclusion criteria are randomly assigned to four sessions of IBBT (Integrated Brief Behavioral Therapy) administered on-site by a social worker or treatment as usual (TAU), which is a facilitated community referral for therapy and appropriate mental health treatment.

Impact: What was the impact of your work last year? Please also describe the projected future impact for the coming years.

Last year, we screened 100% of teens with cystic fibrosis for depression and connected those in need with community mental health services. We are currently screening all teens with IBD for depression and anxiety. One teen with Crohn's Disease and depression recruited to the study had been unable to attend school for most of the year due to his health conditions. He started IBBT sessions with the social worker and after the third session, his mother reported on the effectiveness of the therapy, her son's enjoyment of the sessions, and their wish to have him continue in treatment. His mother shared that her son had seen several therapists in the last few years but without noticeable benefit and change. We hope to adapt this integrated model of care across our hospital locations within New York City and to screen youth between the ages of 8-11 years in the next phase of our project.

Organization Type

  • nonprofit/NGO/citizen sector

Annual Budget

  • $100k - $250k

Financial Sustainability Plan: What is your solution’s plan to ensure financial sustainability?

Our project receives access to clinical and claims data through the NYU Langone Medical Center (NYULMC) Center for Healthcare Delivery Science (CHIDS) and mentorship from CHIDS faculty. The successful implementation and evaluation of this project has the potential to receive additional and ongoing institutional, foundational, and federal funding support.

Unique Value Proposition: How else is this problem being addressed? Are there other organizations working in the same field, and how does your project differ from these other approaches?

CBT is a widely used psychological intervention to address mental health issues in children with chronic physical illness, including IBD. In the current literature, studies using CBTs are generally administered by doctorate-level clinical psychologists, advanced doctoral students, and psychiatrists. For our study, we are training on-site clinical social workers to lead the IBBT sessions. This delivery system redesign allows us to use existing health care staff to enhance the standard medical care to include mental health, to reduce costs, and to build a sustainable, coordinated care model.

Reflect on the Field and its Future: Stepping outside of your project, what do you see as the most important or promising shifts that can advance children’s wellbeing?

An integrated behavioral health care model trains, supports, and optimizes the role and expertise of our currently underutilized, embedded social work staff working at the Fink Center. A successful pilot of our a brief, integrated, personalized intervention for depression and anxiety within the context of chronic medical illness care would have enormous implications for dissemination, implementation, and generalizability to other health care settings and chronic illness conditions. If the pilot intervention succeeds, this work can adapted and broadened to other childhood populations.

Source: How did you hear about the Children’s Wellbeing Challenge? (the answer will not be public)

  • Word of mouth

Referral: If you discovered the Challenge thanks to an organization or person other than Ashoka, who was it? (the answer will not be public)

Chief Informatics Officer, NYU Langone Medical Center

Evaluation results

10 evaluations so far

1. Relevance: Does this project seem to help children (ages 0 to 12 years) develop a strong sense of self, belonging, and purpose?

5 - Yes, this is great! The project lays out a strong, compelling case for how its model nurtures children’s wellbeing. - 10%

4 - It seems like a good fit, and the model talks explicitly about children’s wellbeing. - 70%

3 - I think so. The project seems related to children’s wellbeing, but the logic is vague. - 20%

2 - Not sure. The project doesn’t have much to do with wellbeing, or it doesn’t give enough information. - 0%

1 - Nope, this project definitely doesn’t fit the challenge brief (e.g., It doesn’t help kids younger than 12, isn’t in the U.S., etc.) - 0%

2. Innovation: Does this project tackle children’s wellbeing from a new angle?

5 - I loved this! The project describes a novel model that addresses important cultural or systemic barriers. - 0%

4 - This is pretty cool. The project is addressing an important problem in a new or compelling way. - 30%

3 - I feel like there’s something there, but I want more details about what makes it distinctive. - 50%

2 - It’s a good project, but I’ve seen others like it before. - 10%

1 - It was confusing or hard to tell what it made it different. - 10%

3. Social Impact: What is this project’s potential for creating positive social impact?

5 - Lots of potential. This project is achieving impressive results, and it’s growing quickly. It could absolutely inspire changes in the ways we approach caring for kids nationally, across sectors (e.g. childcare, healthcare, education). - 0%

4 - Pretty good potential. This project demonstrates significant positive impact so far, and it could scale regionally or nationally one day and fundamentally change how a system operates (e.g. childcare, healthcare, education). - 40%

3 - Budding potential. This project is creating local impact, but it would take a few adjustments before it could scale. - 40%

2 - Some potential. This project demonstrates some initial positive impact, but it would require major changes before it could scale. - 20%

1 - Limited potential. This project has great intentions, but it looks like it does not include key drivers of a shift towards children’s wellbeing. - 0%

4. Overall, how do you feel about this idea?

5 - This idea rocked my world. It’s awesome! - 0%

4 - This idea seems really exciting. With a little more polishing, it’d be among my favorites. - 50%

3 - I think the idea is great, but it needs some work before it moves onto the next round. - 20%

2 - I liked it fine but preferred others. - 20%

1 - It didn’t make my heart beat faster. Needs significant revisions. - 10%

5. Offer some feedback. Where should this participant spend some time revising?

DEFINING THE PROBLEM. Make sure to articulate the root causes or main barriers of the social issue your project addresses. (Founding Story, Problem, Solution). - 40%

CLARITY OF MODEL. Make sure to mention (a.) the beneficiary, b) the main activities, and c) how those activities drive social impact. Keep it streamlined! - 40%

MARKETPLACE. Make sure to research other players in this space and articulate how this project is different. I didn’t get a complete sense of how this project compares to others. - 100%

IMPACT POTENTIAL. Make sure to use specific numbers to describe what your project has achieved so far! And consider how you might scale the model or its insights, through partnerships, trainings, or franchising. - 40%

WRITING STYLE. Try to stay concise and make it vivid. Avoid jargon. - 60%

Nothing stands out! I thought it was great. - 20%

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Team

Hello Doug,
Thanks for your thoughtful comment & well wishes! Means a lot coming from a parent who knows the challenges and juggling of appointments, treatments, work and school first hand. We are measuring a host of outcome measures including treatment engagement (how willing are teens to engage in therapy sessions), improvements in psychological wellbeing, quality of life, chronic disease activity, need for emergency room visits or hospital admissions, school and social functioning. We're lucky to have a team of teens & young adults with chronic illnesses, such as Crohns, Cystic Fibrosis, epilepsy, diabetes, 
and their parents who help guide the selection of our impact measures. Would love to know if you have more to add to the list or any ideas you have about meaningful measurement. Ron-Li 

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