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%)