pediatric versus adult care providers transitioning care of young adults with type 1 diabetes...

Pediatric Versus Adult Care Providers

Transitioning Care of Young Adults with Type 1 Diabetes Position

Statement Conference March 26-27, 2010

Chicago, IL

Pediatric Versus Adult Care Providers’ Group

Janet Silverstein, MD, University of Florida

Zachary T. Bloomgarden, MD Mount Sinai School of MedicineShannon P. Lyles, BSN, RN, CDE

University of Florida Pediatric EndocrinologyKathleen M. Hanna, PhD, RN

Indiana University

Major Areas of Presentation

1. Pediatric versus Adult Care2. Experience of young adult and parents3. Descriptive and Exploratory Research4. Research on Transition Programs

1. Pediatric Versus Adult Care Provider

• Care to which young adult accustomed and to which need to adapt:– Salient aspects of Pediatric Care

• ADA Statement

– Salient Aspects of Transition Care• Society of Adolescent Medicine Position Statement• National Diabetes Education Program: A resource

– Salient aspects of Adult Care

Questions to Consider for Later Discussion

– What are the predominate similarities & differences between Pediatric and Adult Care?

– What are the gaps when transferred?

Dr. Janet Silverstein

Treatment Goals

T1DM

Normoglycemia Normal HbA1c Control hypertension Correct dyslipidemia Avoidance of hypoglycemia

Glycemic TargetsGlucose values are plasma (mg/mL)

AgeAge Pre-Meal Pre-Meal BGBG

HS/Night HS/Night BGBG

HbA1cHbA1c

Toddler Toddler

(0-5 yrs)(0-5 yrs)100-180100-180 110-200110-200 ≥≥7.5 & 7.5 &

≤8.5%≤8.5%

School-School-ageage

(6-11 yrs)(6-11 yrs)

90-18090-180 100-180100-180 <8%<8%

AdolescenAdolescentt

(12-19 (12-19 yrs)yrs)

90-13090-130 90-15090-150 <7.5%<7.5%

Recommendations For Management Of Retinopathy

Annual screening should be done when the child is ≥ 10 years old and has diabetes

for 3-5 years

Recommendations For Management Of Albuminuria

Annual screening for urinary albumin should begin when

Child is ≥ 10 yrs oldDM of 3- 5 years duration

Recommendations for albuminuria testing

• If urine albumin: creat ratio on spot urine is abnormal (30-299 mg/gm creatinine)– Confirm with 2 additional urine specimens– Obtain up: down urine specimen to rule out orthostatic

proteinuria

• Treatment– ACE Inhibitors – Treat BP aggressively

Recommendations For BP Management

Obtain BP at every visitRepeat with child sitting and relaxed on 2 more occasions

BP: When to Treat• HTN defined as BP≥ 95% for age, sex and height measured on

3 separate days• High normal BP is ≥ 90% but < 95%• Rule out non-diabetes causes

• High normal BP– Diet (limit salt) and exercise for 3-6 months– If still high normal, treat with ACE inhibitor

• Hypertension (confirmed)– Treat with ACEI to achieve BP< 90%

Recommendations For Lipid Management


• When to test– Pre-pubertal children >2 years old should have

• Fasting lipids at diagnosis if there is positive FH of increased lipids or early cv event (<50 males, < 60 females)

– If initial LDL-c < 100 mg/dl, repeat every 5 years– If initial LDL-c > 100 mg/dl, begin therapeutic

lifestyle change (TLC) • Fasting lipids at puberty or at age 12 yrs if FH normal

– Pubertal children or > 12 years old should have fasting lipid profile done at time of diagnosis after BG control established


• LDL-c > 100 mg/dl– Step 2 diet (< 7% saturated fat, < 200 mg/d chol)– Exercise 60 minutes daily– Intensify efforts to normalize BG– Repeat 3-6 months

• LDL-c >130 mg/dl & ≤ 160 mg/dl after 3-6 mos– Consider treatment

• LDL-c > 160 mg/dl after 3-6 months– Treat– Statins are drugs of choice

Issues Unique to Adolescents

Adolescent Medical Issues

• High GH and sex steroids associated with increased insulin resistance and difficulty achieving good BG control

• Impaired counter-regulatory hormones at night increasing risk of nocturnal hypoglycemia and post-exercise hypoglycemia

Family Issues• Knowledge is necessary but not sufficient

– must constantly update knowledge– education at diagnosis often geared toward parents and

never re- directed to teen

• Difficult for parents to determine how much responsibility to give– Over-protectiveness may lead to delayed transition of

care and, ultimately, rebellion– Premature handing over of responsibility may lead to

deterioration in compliance to diabetes tasks and worsening of metabolic control

Issues Needing to be Taken Into Account During Transition

• Desire for peer acceptance– Doesn’t want to be different – Wants to be “cool”, to feel normal.

• Rebellion against authority– −Listens to peers more than to parents or other adults– Resentment about “nagging”– Escalating responsibility and increased risk-taking.– Wants independence

• Risk taking behaviors– Feels invulnerable Driving– Sex Drugs– Alcohol Medic alert

Issues Affecting Adherence: Diabetes tasks make adolescents feel "different” from peers

- Taking insulin or oral medication- Checking blood glucose - Having to count carbs- Appearance

Non-adherence: Extent of the Problem

• Most patients reported taking their insulin injections; – 10% reported administering the wrong dose, – 20% reported giving the injection at the incorrect time, and – 19% reported having difficulty adhering to their physician’s

recommendations regarding adjusting their insulin dose

• YET, higher rates of non-adherence are typically reported for other diabetes treatment components.

Delamater, Applegate, Eidson, & Nemery, 1998

Non-adherence: It Only Gets Worse

• 31% of pediatric patients do not adhere to the recommended timing or frequency of BG testing.

• 48% of adolescents with T1D do not adhere to their recommended eating practices by parent report*

• A nine-year follow-up study of newly diagnosed T1D patients determined that 45% of adolescent were non-adherent to their treatment regimen•

* Delamater et al., 1998 • Kovacs, Goldston, Obrosky, & Iyengar, 1992

Society for Adolescent Medicine Statement on Transition: National Consensus Conference

• Health care provider (HCP) takes responsibility for care coordination and health care planning

• Identify core competencies needed to give developmentally appropriate health care that are – Taught to adult HCPs– Are required for adult HCP certification

• Develop portable, accessible medical summary to provide to adult HCP

Society for Adolescent Medicine Statement on Transition: National Consensus Conference

• Develop up-to-date detailed written transition plan in collaboration with patients and their families

• Ensure that affordable, comprehensive, continuous health insurance is available to youth throughout adolescence and into adulthood

Rosen DS, et al. Transition to Health Care for Adolescents and Young Adults with Chronic Conditions: Position Statement of the Society for Adolescent Medicine. Journal of Adolescent Health. 2003; 33:

Society for Adolescent Medicine Statement on Transition

• The PPC in partnership with family must coordinate sub specialty care, taking into account

• Psychosocial development/ health• Educational and vocational progress

• Collaborative development of best practices for management of adults with diseases of childhood should be developed

• Further research needed to examine health outcomes and cost benefit issues

NDEP Transition Website: Excellent website about to be launched

• Transition Resources - Pediatric to Adult Health Care• View by category | View resources by media type• Type 1 Diabetes in College• Preventing Hypoglycemia and Hyperglycemia Crises• Diabetes Education and Self-Care• Emotional Health• Motivation• Other Diabetes Topics to Help Young Adults Become Independent• Find a Physician, Diabetes Educator, Dietitian, or Education Program• Visits to an Adult Care Physician• Health Insurance• Health Care Professional Resources• Non-Diabetes Related Transition Resources• Parent Resources• Participation in Research• Spanish Language Resources• Transition Workbooks, Checklists & Guides

NDEP Website www.YourDiabetesInfo.org/transition

• Type 1 Diabetes in College• Juvenile Diabetes Research Foundation – Type 1 Diabetes in college

This site includes information on:– Telling your roommate about diabetes– Being a newly diagnosed person with diabetes in college

This site includes information on:– Shopping List - Supplies for College/On Your Own– Things You’ve Heard Before But It Doesn’t Hurt to Hear Again– Taking Care of Yourself When You Are Sick– Fact Sheet or Letter For Roommates– Tips for Traveling– Dating, Engaged, Married

•

NDEP Website:Summary of Focus Group Meetings

• 39 young adults with T1DM (ave age 22.5 years)– 96% thought checklist helpful for implementing transition– 96% thought timeline realistic– Most useful topic group was T1DM in college– >90% thought following links useful:

• T1DM in college Find a physician, CDE, dietitian, etc

• Visit to adult HCP Diabetes education and self care• Preventing crises Driving, preg, alcohol, tobacco

The transition from pediatric to adult care of type 1 diabetes:

A Clinician’s ViewZachary T. Bloomgarden, MD

Member of Board, AACE Clinical Professor

Mount Sinai School of MedicineNew York, New York

The American Association of Clinical Endocrinologists

• AACE'S MISSION STATEMENT• …a professional community of

physicians specializing in endocrinology, diabetes, and metabolism committed to enhancing the ability of its members to provide the highest quality of patient care.

EPIDEMIOLOGY

Diabetes <20 years old, US, 2007

• About 186,300 people younger than 20 years have diabetes (type 1 or type 2).

• This represents 0.2% of all people in this age group.

• All these children will, we hope, become adults and require ongoing care

CDC. National Diabetes Fact Sheet, 2007

SEARCH for Diabetes in Youth, United States Incidence, 2002-3

CDC. National Diabetes Fact Sheet, 2007

Diabetes in youth in the US. SEARCHfor Diabetes in Youth Study Group. JAMA. 2007;297:2716

Characteristics of youth with diabetes

THE TRANSITION – GLYCEMIC TREATMENT ISSUES

• Home glucose monitoring with appropriate analysis

• Continuous glucose monitoring• Integrating SMBG, CGM, and data

management

Analysis of home glucose results

Meter download, Glucose mean 130, SD 41 mg/dl

CGM usefulness vs. age

JDRF CGM Study Group NEJM 2008;359: 1464, Table 1

CGM benefit particularly >25 y/o


Is it useful?

JDRF CGM Study Group NEJM 2008;359: 1464

Is it useful?


Is it useful?


1 week=168 hours

Is it useful?


Diabetes cell phone diary

Rossi et al. Diabetes Technol Ther 2009-11-19

Diabetes cell phone diary41 patients, 9-month results

Rossi et al. Diabetes Technol Ther 2009-11-19

Uses of telemedicine for glycemic control

• Allow more patient-provider interaction• Allow patients to more readily update

providers on self-monitored data– Role in glycemic treatment adjustment

• Problems– Many applications not user-friendly– Need for strong evidence of efficacy– Need for provider reimbursement

RISK FACTORS AND COMPLICATIONS

Transition: Risk factors and complications

• Obesity / physical inactivity• Dyslipidemia• Hypertension• Nephropathy, retinopathy• Cardiovascular issues• Foot care

Childhood obesity. Reilly and Wilson. BMJ 2006;333;1207

Trends in childhood obesity

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6

8

10

12

14

16

Pe

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ov

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ht

1963-1965

1966-1970

1971-1974

1976-1980

1988-1994

1999-2000

6-23 month2-5 year6-11 year12-19 year

Ogden et al. JAMA. 2002;288:1728-32

Childhood obesity. Reilly and Wilson. BMJ 2006;333;1207

Median Habitual Activity in Black (●) and White (○) Girls

0

5

10

15

20

25

30

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9-10 11-12 13-14 15-16 17 18 19

Age

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ek

Kimm SY et al. NEJM 2002;347:709-15

Meter download. New impression, fasting hyperglycemia, relative evening hypoglycemia..

Averages: 207 177 111 127

Analysis of home glucose results

Microalbuminuria risk factors

Prevalence of Diabetes Complications in Adolescents With Type 2 Compared With Type 1 Diabetes. Diabetes Care 2006;29:1300

Prevalences of nephropathy and retinopathy in Pima Indians

From data in Krakoff J et al. Diabetes Care. 2003;26:76-81

Onset of diabetes prior to age 20 (○), age 20-39 (■), and age 40 and over (▲).

Retinopathy

Complications in Early-onset Type 2 Diabetes- Follow up of 1065 patients from 1970 to 1990 -

Proliferative Retinopathy 299 (28%)Blindness 37 (4%)

Nephropathy 151 (14%)Renal Insufficiency 75 (7%)Dialysis 50 (5%)

(Yokoyama H et al; Diabetes Care 1997)

Pima Indians: renal disease and mortality risk of diabetes developing <20 vs. >20 years old.

ESRD cases per 1000 person-years

Mortality per 1000 person-years

Pavkov et al. JAMA. 2006;296:421

Beauloye et al. Intima-Media Thickness in Obese Children. JCEM 2007;92:3029

Management of Dyslipidemia in Children and Adolescents With Diabetes. Diabetes Care

2003;26:2194• Screening: After glycemic control, Type 1 lipid profile at diagnosis

and then, if nl, q 5 years, (< age 12 years (if prepubertal) only if + family history). Type 2, lipid profile at diagnosis and then every 2 years– Goals: LDL 100 mg/dl, HDL 35 mg/dl, Triglycerides 150 mg/dl

• Treatment strategies– Diet– Maximize glycemic control– Weight reduction, if indicated– Medications: Age <10 years LDL >160 mg/dl, consider 130–159 mg/dl based on

CVD risk profile, using Statins &/or resins– Fibric acid derivatives if triglycerides >1,000 mg/dl

• Manage other CVD risk factors: Blood pressure, Tobacco, Obesity, Inactivity

THE TRANSITION –ADULT DIABETES EVALUATION AND MANAGEMENT

Diabetes care approaches

• A complete medical evaluation should be performed to classify the diabetes, detect the presence of diabetes complications, review previous treatment and glycemic control in patients with established diabetes, assist in formulating a management plan, and provide a basis for continuing care. Laboratory tests appropriate to the evaluation of each patient’s medical condition should be performed. A focus on the components of comprehensive care (Table 8) will assist the health care team to ensure optimal management of the patient with diabetes.

ADA. Standards of Care, Diabetes Care 2010 ;33:S11

The Evaluation: Medical history

• Age and characteristics of onset of diabetes (e.g., DKA, asymptomatic laboratory finding)

• Eating patterns, physical activity habits, nutritional status, and weight history; growth and development in children and adolescents

• Diabetes education history• Review of previous treatment regimens and

response to therapy (A1C records)


The Evaluation: Current treatment

• Current treatment of diabetes, including medications, meal plan, physical activity patterns, and results of glucose monitoring and patient’s use of data– DKA hx– Hypoglycemia hx (awareness, frequency, causes)– Microvascular complication hx– Macrovascular complication hx– Other: Psychosocial, dental


The Evaluation: Examination

• Ht, wt, BMI, BP, orthostatic prn, (waist, pulse)• Fundi, (other HEENT)• Thyroid• Skin (for acanthosis, insulin injection sites)• Feet: inspect, DP/PT, KJ, AJ, proprioception,

vibration, monofilament sensation• (heart, chest, abdomen, extremities, other

neuro)ADA. Standards of Care, Diabetes Care 2010 ;33:S11

The Evaluation: Laboratory and Referrals

• A1c every 2-3 months• Fasting lipids, LFTs, UAE, creatinine, eGFR, TSH

annually• Referrals:

– annual dilated eye exam– Family planning for childbearing age women– Registered dietician– DSME (diabetes self-management education)– Dentist– Mental health prn


Transition from pediatric to adult care of type 1 diabetes

• Epidemiology• Glycemic management• Complications• Evaluation and management

2. Experience of Young Adult and Parents

• Presentation– Experience of one young adult and her parent

• Questions to Consider for Later Discussion– What are salient aspects of young person’s and

parent’s experience that facilitate or interfere with the transition?

Shannon Lyles, BSN, RN, CDE

My story:

• Diagnosed age 16, beginning of 11th grade year• 1 or both parents went with me to all

appointments• Had great support system• Loved nurse educator & doctors• Went off to college and scheduled visits for

breaks• Never discussed transitioning formally

My reservations about transition:

• Comfortable with providers I’d had since diagnosis

• Wouldn’t understand type 1• Not as easy access for BG review, RXs, etc• What are they going to tell me I don’t already

know?• Horror stories about friends’ experiences

My parent’s reservations:

• My mom said, “I had no concerns because you’d always taken care of it. I wasn’t concerned about it going well, because of your confidence.”

The transition:

• Went smoothly• Adult endo knowledgeable• 1st visit very thorough• Endo takes time to go over logs and makes

recommendations• Listens to my thoughts/recommendations

Differences between pediatric & adult care:

• Only see doctor when I go for adult appointment.

• Typically always saw a nurse educator when had my pediatric appointments.

• Dietitian is available.• Recommendations are made then I choose

whether or not to follow.

What I hear young adults/parents say in clinic:

• “I want to stay with you all forever!”• “We are so comfortable with your care.”

OR

• “I went to adult endo and had a bad experience, so I came back here.”

Kathleen Hanna, PhD, RN

3. Descriptive and Exploratory Research Related to Transfer

• Descriptive Characteristics – Age of transfer – Type of Provider – Insurance

• Indices of Potential Difficulties – No Care or Usual Care – Delay in Care– Changing Providers – Clinic Attendance – Diabetes Outcomes

Descriptive and Exploratory Research Related to Transfer

• General Issues to consider– Very few studies– Majority were single descriptive studies– Sample size– Different populations– Differing operationalization of variables– Various clinic procedures – confounding variables

unknown or not controlled

Questions to Consider for Later Discussion

• When should the transition occur? Age? Readiness? Other transitional events? Other factors to consider?

• What is the context of the adolescent’s life and the health care system that are influential?

Descriptive Characteristics• Age of Transfer

– Ranges from 15.9-19.8 years • (Busse et al., 2007; Eiser et al., 1993; Frank, 1996; Holmes-Walker,

et al., 2007; Orr et al., 1996; Pacaud et al., 1996, 2005; Salami et al., 1986; Sparud-Lundin et al., 2008; Vidal, et al., 2004)

• Type of Provider– 37% of 18-25 year olds still in pediatric diabetes

clinics • (de Beaufort et al, 2010)

• Insurance– 22% of young adults with disabilities uninsured

• (Callahan & Cooper, 2007)

Indices of Potential Difficulties with Transfer

• No Care– 18- 24 % never seen in adult clinic post transfer

• (Johnston et al, 2006; Frank 1996) – 18% young adults have no usual source

• (Mainous et al., 2004)– 18.9% non-attendance rate over past year

• (Eiser et al., 1993)• Delay of care

– 27.5 -31% delayed care more than 6 months between peds and adult clinic

• (Pacaud et al., 1996; 2005)• Changed provider

– 52% changed provider• (Busse et al., 2007)


• Clinic attendance– 36-86% regular or good clinic attendance

• (Dyer et al., 1998; Frank, 1996; Johnston et al, 2006; Kipps et al., 2002)

– Clinic attendance described to decrease from pre to post transfer

• (Busse et al., 2007; Johnston et al., 2006; Kipps et al., 2002) • 1 study reporting significance (Channon et al., 2005)

– No consistent findings on prior clinic attendance associated with post

• 1 study reporting association (Channon et al., 2003) and • 1 reporting no association (Frank, 1996).


• Clinic Attendance & Diabetes-related Outcomes– Metabolic Control: Inconsistent findings:

• Worse control with poor clinic attendance (Dyer et al., 1998; Frank, 1996; Kipps et al 2002) and

• No association or difference (Busse et al., 2007; Channon et al., 2003)

– Complications: No association:• with presence of retinopathy (Channon et al., 2003) or

“chronic complications “ (Frank, 1996)– Hospitalizations : Inconsistent findings:

• no association (Channon et al., 2003) and • poor clinic attenders more likely had diabetes-related

hospitalizations (Frank, 1996)

Metabolic Control and Emerging Adults

• Peaks in middle to late adolescence at– 16 years (Pound et al., 1995)– 18-19 years (Bryden et al., 2001)– 18 years (Insabella et al., 2007)

• Becomes better into young adulthood, by– 22 years (Bryden et al., 2001) – 24 years (Insabella et al., 2007) – 27 years (Pound et al., 1996).

Metabolic Control Patterns • Longitudinal study, assessed 8 times, T1-4 for

middle to late adolescence (ages 14-17) and T5-8 for emerging adulthood (21-25)

• 3 patterns of change: Moderate control, optimal control and deteriorating control– Moderate control: 7.58 at T1 up to 8.5 at T4 to 7.74

by T8– Optimal control: 6.3 at T1 to 7.4 at T2 to 5.98 at T8– Deteriorating Control: 6.57 at T1 to 9.89 at T4 to 9.78

at T8 • (Luyckz & Seiffe-Krenke, 2009)

Change in Diabetes Outcomes Post Transfer

• Metabolic control – Some report improvements (Salmi et al., 1986;

Sparud-Lundin et al., 2008)– Some report no change (Busse et al., 2007; Orr et

al.,1996)• Complications and hospitalizations

– Hypoglycemia and ketoacidosis did not change (Sparud-Lundin et al., 2008)

– After removing outliers, rates of acute hyperglycemia significantly increased after transition and DM related hospitalizations increased after transition (Nakhla et al 2009)

4. Research on Transition Programs• Descriptions without evaluation• Programs

– based on scant empirical findings of problems– have multiple components and no clear

theoretical underpinnings

• Evaluation of single program• Retrospective comparison• No Randomized Control Studies

Questions to Consider

• How do elements of effective strategies addressed the problems identified in the literature?

• What problems have not been addressed in the existing research of effective strategies for transition?

• How do elements of effective strategies reflect theoretical/conceptual frameworks or models?

• How do elements of effective programs reflect transition care principles outlined by SAM?

Evaluation of Multiple Component Program (Vidal, et al., 2004)

• Program with aspects of coordination of HCPs, focus on readiness, goal setting and contract, follow-up – both group and individual

• Diabetes- related Outcomes: – Significant increase in diabetes knowledge – Significant improvement in aspects of diabetes

management (carbohydrate counting, insulin adjustments)

– Significant decrease in glyccated haemoglobin

Evaluation of Multiple Component Program (Vanelli et al.,2004)

• Program had multiple aspects involving: communication of expectation of transfer, privacy and continuity of care; introduction and collaboration of both adult and pediatric Drs; young adult friendly clinics

• Outcome: Mean HbA1c at one year post (7.6%) was significantly lower than pre transition (8.8%)

Evaluation of Systems Navigation Program (Van Walleghem et al., 2006)

• Program: Maestro - transitional support and systems navigation services with administratively-based coordinator to provide support and deal with barriers to accessing care

• Usefulness: – 17 youth requested community contacts for

assistance with access to care, education or optometry services

– 111 youth contacted program 203 times for other information

Description of Two Cohorts(Van Walleghem et al., 2008)

• Program: Maestro • Compared:

– Cohort 1: age = 18 years; Maestro as graduated from Pediatric care and

– Cohort 2: age = 19-25 yrs; No Maestro as graduate pediatric care, but enrolled in 1-7 yrs after

• Outcomes:– cohort 1: 11% dropped out of care, – cohort 2 : 40%(prior to Maestro) dropped out of care,

Comparison Structure versus Unstructured (Cadario et al., 2009)

• Program– Unstructured manner (letter) – Structured manner (transition coordinator, communication of

expectation of transfer, coordination and continuity of HCP, last visit without parents

• Outcomes– Significantly more of unstructured group had break in care and

laboratory values than structured group – Significantly more of unstructured group had longer time between last

peds and first adult visit. • Only 31% of unstructured group had been seen by adult care within one year

while nearly 100% of structured had; • after 3 years of last peds visit, only 73% of unstructured as compared to 100%

of structured still followed by adult care– Structured group had improvement in HbA1c in year of transition and

more clinic attendance

Comparison Transfer with or without Continuity of HCP (Nakhla et al., 2009)

• Pediatric providers’ methods of transition of care and categorized as– Without continuity

• transfer new DR and health care team, • transfer to new Dr with no team

– With continuity • transfer to new Dr, but same health care team, • no change in Dr or team, • Transfer new team but remaining with same Dr

• Outcomes:– 77% less likely to be hospitalized after transition to new team without

change in Dr compared those transferred to new Dr with either new or no team;

– those no change in care after transition had decreased risk for DM related hospitalization; those who transferred to new Dr were 4 times more likely to be hospitalized after transition

Evaluation of Young Adult Clinic(Holmes-Walker et al., 2007)

• Program: transition support program for appointment reminders and appointments as well as after hours support service for sick day management

• Statistically significant outcomes:– M HbA1c was 9.3+2.17% initially and decreased to

8.8%+1.9 after 5 visits , 0.13% decrease per visit– Decrease in DKA admissions

pediatric versus adult care providers transitioning care of young adults with type 1 diabetes...

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