A recording of this presentation is available HERE.
Deep gratitude this week to Dr. Urs Naber, CPMC PICU Medical Director, who jumped in last minute to give a moving Grand Rounds this week on the Care of Children with Medical Complexity (CMC). Please do watch his presentation at the above link if you are interested in the topic.
In the literature 0.7-11% of ALL children have medical complexity (definition somewhat vague)>> about 1-2% of all children
Defining CMC: chronic condition + substantial family needs + functional limitation + heath care utilization
- previously CF patients were the highest percentage of CMC, but new treatments has changed this.
- Any medical condition can count as a chronic condition, depending on its length >> technology dependence is a driver that makes this population so vulnerable
Children with CMC have specific in home needs: medical equipment, medication administration, assistance with ADLs. CP/MD often have respiratory support technology and functional limitations that lead to high needs and high healthcare utilization
Dr. Naber shared with us a video (included in the link of the full presentation above) about a child with medical complexity named Connor and his two dads and four adopted siblings. Connor was born with Trisomy 9 and is G-tube dependent, wheelchair bound, non-verbal. The video really showed us how complex it is to take care of these children, a reminder of what it means to families to be together. Reminder to
CMC have a substantial impact on healthcare, which is expanding, 2006 <1% population, making up 10% of pediatric hospitalizations, 25% of all hospital days, 41% of all healthcare costs (attributed to hospitalizations). . . 2022, now 1-2% of population, 63% of hospitalizations attributed, 79% of all hospital days, 84% of healthcare costs. Many times these kids have to stay in ICU for their respiratory care.
Why is this happening?
- increased survival for children with chronic conditions (e.g. spina bifida, esophageal atresia, biliary atresia, congenital heart disease, prematurity>> previously led to non-survival, but over the last 50 years, rate of survival has increased and continues to increase)
- Total ICU costs are driven dramatically by CMCs (see image below), only 10% of pediatric critical care do not have chronic disease
- ED visits: CMCs comprise 20-30% of all visits (even though 1-2% of population), most commonly respiratory infections, medical device malfunction
- presents unique challenges for ED physician (medical complexity, long medlists), as well as caregiver and patients (subspecialists not available, ED is dangerous)
Dr. Naber shared data from Houston looking at the impact of a comprehensive care program (JAMA, Mosquera, et al 2014), over 3 year timespan>> care coordinator, nurse, cluster care, how much would that effect care?
- 52% reduction in ED visit
- 55% reduction in days of serious illness
- 42% reduction in cost (including the comprehensive care costs)
- time investment decreased over time>> had to invest 6 hours/month per child up front, down to 2 hours/month per child over time and still maintain the drastic impact (see image)
Helping families cope with medical complexity-- surrounding structures really matter
Dr. Naber reminded us of the IHSS program in California, which allows parents to get some income for their caregiving of children with medical complexity. Doesn't cover medical care, but does help cover ADLS (feeding, bathing, clothing)>> family must register and become a provider through the program. Payment is low but is something for parents who are unable to work due to their children with medical complexity. Caregivers with CMC experience an overwhelming burden (almost double) of financial hardship (JAMA 2025)
Families of CMC struggle with cost of living, housing instability, transportation challenges.
Access to specialists and subspecialists is particularly challenging: long wait times (more pronounced if poor or brown in CA). These access challenges add to the parental burden>> leading to missed work/school days, delays diagnosis, delays treatment, etc.
Subspecialty access is only readily available in concentrated metropolitan areas of California (SF Bay area and LA area). See map. Most children don't have adequate access. 1/3 of CMC families report they have drastic challenges accessing pediatric specialty care. Can be average 84 minutes of travel one way to access specialists>> every trip is one day. Again, time off work, paying cost, finding childcare for other children. Though families still prefer in person care (over telemedicine)-- feel more of a connection, get physical exam, etc
Transitions of care can be complex: this includes discharge from hospital (changes in meds/regimens), but also the huge transition when patients age out and become adults. Family physicians can care for these patients as children and continue caring for them as they become adults. In SF Bay Area 1,000 CMC age into adulthood (50% of CMCs)>> these patients continue to have high healthcare utilization rates.
What are additional supports:
- Evidence from the same Houston comprehensive care program>> adding telemedicine support showed even better outcomes and even more decreased cost
- CMC Emergency form, better for patients, caregivers and doctors (especially ED)
- some states have CNA model, where caregivers can get additional training and payment for medical care
- patient/care navigators
- CPMC in process of building a Bridge program, hoping that will move care for CMC in our area to the next level, where they can get subspecialty access and better long-term care
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