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What is the Medical Home for Children with Chronic Medical Conditions? Insights for Improvement. Elisabeth Dellon, MD, MPH: Pediatric Pulmonology Michael Steiner, MD: General Pediatrics and Adolescent Medicine Rachael Carr, BA. Healthcare for Children with Special Healthcare Needs . - PowerPoint PPT Presentation
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What is the Medical Home for Children with Chronic
Medical Conditions?Insights for Improvement
Elisabeth Dellon, MD, MPH: Pediatric Pulmonology
Michael Steiner, MD: General Pediatrics and Adolescent Medicine
Rachael Carr, BA
Healthcare for Children with Special Healthcare Needs
Children and families with special healthcare needs (CSHCN) often straddle primary (PCP) and subspecialty care
Understanding and improving that interplay has the potential to simultaneously improve health outcomes and lower the cost of care
Healthcare for Children with Special Healthcare Needs
Primary care medical homes and subspecialty physician shortage
Right care, right time– Ideally high quality, accessible care
would occur in medical homes when possible
– Subspecialty care would be accessible, and used by PCPs and families only when needed
Study Objective: Examine the interplay
between families, PCP, and specialty care for CSHCN from multiple perspectives.
Goal: To identify variables that impact where and when families use PCP or specialist for care– Eventually be able to ‘turn-up’ or ‘turn-
down’ important variables so that care is pursued where quality will be highest and cost lowest
Methods 3 phase study, mixed methods study 1st Phase
– Survey and interview families of CSHCN as they return for specialty care• Explore perspectives on child’s health• Medical home qualities of both PCP and
specialty care setting• Why they decide to seek care at specialist or
PCP for a discrete problem
Methods 2nd Phase
– Survey subjects’ PCP offices about practice characteristics
– Catalog a series of patient contacts with subspecialty nurses or administrators
– Review PCP clinical notes for those subjects past 12 months
– Review specialist clinical notes for past 12 months
Methods 3rd Phase---preparing to enroll
– Brief survey to large volume of children seeking specialty care to better understand how demographic variables impact specialty v. PCP decisions
Results: Caregiver Survey and Interview
Characteristic N (%) or Median (range)Age of child receiving specialty care 8 years (1-17 years)Health care coverage NC Medicaid
50 (100%)24 (48%)
Distance to UNC from home 49.6 miles (12-220 miles)Number of chronic medical conditions 2 (1-8)Number of specialists seen in past year 4 (1-12)Caregiver rating of child’s health Excellent/very good Good Fair/poor
15 (30%)20 (40%)15 (30%)
Caregiver rating of child’s health now compared with one year ago Better Same Worse
16 (32%)24 (49%)9 (18%)
Results: Caregiver Survey and Interview
Characteristic N (%) or Median (range)Caregiver age 38 years (23-55 years)Female gender 45 (92%)Relationship to child Parent Grandparent Legal guardian
46 (94%)2 (4%)1 (2%)
Caregiver educational level Less than high school High school or GED Some college or 2-year degree College graduate Post-graduate degree
3 (6%)5 (10%)21 (43%)16 (33%)4 (8%)
Percent of Subjects with Varying Chronic medical conditions
Developmental Delay
Seizure disorder
Blindness/trouble seeing
Other condition
Severe allergies
Cystic fibrosis
Eating disorder
Cerebral palsy
Diabetes
Kidney disease
Dermatologic
Cleft lip/palate
Inflammatory bowel disease
Recurrent urinary tract infection
Spina bifida
HIV/AIDS
Permanent deformity of arms/legs
0 5 10 15 20 25 30 35
Percent of Subjects Seeing Each Specialist Type
OphthalmologyNeurology
GastroenterologyOtorhinolaryngology/ENT
EndocrinePhysical medicine/rehabilitation
AllergyCardiology
Genetics/metabolismPulmonology
SurgeryDermatology
NephrologyRheumatology
PsychiatryImmunology
PsychologyDevelopmental/behavioral
HematologyInfectious diseases
OrthopedicsUrology
CraniofacialPlastic surgery
Neonatology/special infant careNeurosurgery
0 5 10 15 20 25 30 35 40
Healthcare Utilization During Past Year
Caregiver missed work
Hospital stay
ER visit
Seen by specialist
Seen by PCP
0% 20% 40% 60% 80% 100%
Not at all1-2 times3-5 times6-12 times13+ times
Who Do Parents Call When Child Has An Acute Health
ProblemRegular Business
HoursAfter Hours/ Weekends
Provider
Primary Chronic Conditio
n
Typical Childhood Illness
Primary Chronic
Condition
Typical Childho
od Illness
PCP 15 (30%) 41 (85%) 14 (30%) 27
(61%)Specialist 35
(70%) 7 (15%) 25 (53%) 8 (18%)Emergency room -- -- 8 (17%) 7 (16%)None (wait until morning) -- n/a -- 2 (5%)
Why Parents Report They Make Those Call Decisions
Regular Business Hours
After Hours/ Weekends
Reason GivenPrimary Chronic
Condition
Typical Childhood
Illness
Primary Chronic
Condition
Typical Childhood
IllnessTrust provider more than others
23 (46%) 12 (24%) 16 (32%) 10 (20%)
Provider returns my calls quickly
7 (14%) 9 (18%) 13 (26%) 12 (24%)
Provider listens to my concerns
11 (22%) 7 (14%) 10 (20%) 9 (18%)
Provider is respectful of child and family
4 (8%) 4 (8%) 6 (12%) 1 (4%)
Provider knows more about child’s condition than others
42 (84%) 16 (32%) 25 (50%) 13 (26%)
Provider will see child same day
13 (26%) 26 (52%) 11 (22%) 14 (28%)
Good relationship with provider
12 (24%) 12 (24%) 12 (24%) 10 (20%)
Good relationship with staff 11 (22%) 5 (10%) 6 (12%) 2 (4%)Costs less than other providers
1 (2%) 1 (2%) 1 (2%) 2 (4%)
Insurance dictates who to call 2 (4%) 8 (16%) 4 (8%) 5 (10%)Provider lets me know about results
3 (6%) 2 (4%) 5 (10%) --
Provider values my opinion 10 (20%) 6 (12%) 6 (12%) 3 (6%)Don’t have a long wait 4 (8%) 6 (12%) 5 (10%) 3 (6%)Convenient location 6 (12%) 20 (40%) 11 (22%) 14 (28%)Usually seen by same provider 3 (6%) 2 (4%) 1 (2%) --Provider requested we contact them first
8 (16%) 7 (14%) 7 (14%) 5 (10%)
Reasons For Calls to Specialty Nurses
Total of 866 calls logged by 15 specialty nurses
704 calls (81%) were related to the medical condition addressed by the specialist
Reason for call N (%)Request clinic appointment 173 (20%)Medication question 153 (18%)Test results 95 (11%)Medication refill request 77 (9%)Follow-up 79 (9%)Sick call 79 (9%)Procedure appointment 60 (7%)Request to speak to MD 29 (3%)Forms for school/camp 27 (3%)Need referral 20 (2%)Insurance question 16 (2%)Appeal prior authorization 18 (2%)Adverse medication reaction
21 (2%)
School/work excuse 19 (2%)Transportation concern 6 (1%)Results from other specialty 8 (1%)Other 100 (12%)
Family Perception of Medical Home Characteristics of PCP Care
0102030405060708090
100
Parent Per-ception of PCP, Always Responses
PCP Report of Medical Home Characteristics of PCP Practice
75% response rate 19% Medical home designation by
NCQA
PCP Report of Medical Home Characteristics of PCP Practice
0102030405060708090
100
Parent Perception of PCPPCP Re-sponse
Family Perception of Medical Home Characteristics of Specialty Care
0102030405060708090
100
Parent Percep-tion of PCPPCP ResponseParent Percep-tion of Specialist
Next Steps Analyze and compare chart
extraction data from PCP and specialist clinical notes
Examine documented communication between those
Large sample to further examine sociodemographic characteristics
Summary CSHCN have multiple problems & see
multiple specialists Report more specialty visits per year than
PCP visits Parents contact their specialists for care of
the chronic medical problems, and PCP for typical childhood illnesses
Many parent contacts to specialists could be handled at PCP office
Summary Parental decisions of who to call for
questions seem most influenced by– Provider who knows child best– Access to appointments and convenient
location– Trust
Families perceive less medical home characteristics at PCP than reported by those practices
Families perceive more medical home characteristics in specialty care than PCP
Discussion Current care for CSHCN likely
maldistributed, with too high of a proportion of care done at specialists– Changing family decision about care seeking
for CSHCN could dramatically affect this– Could increase contact with PCP, lower contact
with specialist which would improve specialist access
Need to increase parent sense that PCP has– Knowledge of child’s condition– Access and convenience– Trustworthy
Discussion Do PCPs help create this problem by not
actively managing chronic problems where specialist has seen child?– Eg “You need to call UNC for that”
Do specialists worsen this by– Too many F/U appointments instead of
transferring care back to PCP– Not communicating to PCP– Giving family message that only a specialist
should care for this problem
Questions Questions Elisabeth_dellon@med.unc.edu Msteiner@med.unc.edu
Thank you to Access Care/Medicaid for funding study
Thank you to Steve Wegner and Alan Stiles for guidance and supervision of project
Hidden Slides
Medical care during past year
Not at all
1-2 times
3-5 times
6-12 times
13+ times
Seen by PCP 1 (2%) 16 (32%) 14 (29%) 11 (22%) 7 (14%)
Seen by specialist -- 7 (14%) 15 (31%) 13 (27%) 14 (29%)
Required ER visit 27 (55%)
11 (22%) 7 (14%) 4 (8%) --
Separate hospital stays
27 (56%)
12 (25%) 7 (15%) 1 (2%) 1 (2%)
Missed work* 11 (23%)
8 (17%) 9 (18%) 14 (29%) 6 (13%)
PCP practice demographicsCharacteristic N (%) or median
(range)Practice type Pediatrics Family medicine
26 (84%)5 (16%)
Practice established < 5 years ago 6-10 years ago 11-20 years ago >20 years ago
1 (3%)8 (25%)11 (36%)11 (35%)
Percent of patients with Medicaid 35 (8-95%)Regular practice hours < 40 per week 40-50 per week > 50 per week
4 (13%)20 (64%)7 (23%)
“Extra” availability Weekend hours Morning walk-in Evening walk-in
26 (84%)14 (45)14 (45)
Share call with other practices 8 (26%)Response time to calls during regular business hours Within the hour Same half day By end of same day By next business day
19 (61%)4 (13%)3 (10%3 (10%)
Other features of primary care practices
N (%)Nurse coordinator available 25 (81%)E-mail communication available 9 (29%)Non-English written materials available 26 (84%)Spanish interpreter used 28 (90%)Patients charged for phone calls 0 (--)Patients charged for appointment no-shows
11 (35%)
Patients charged for late cancellations 4 (13%)
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