Provider Perspectives andPatient Abilities

Laurie Fishman, M.D.PAS SymposiumApril 27, 2012

Children’s Hospital Boston

What are the clinician’s beliefs and perceptions regarding transition and transfer

at Children’s Hospital, Boston?

Susan M. Fernandes, M.H.P., P.A.-C.; Laurie Fishman, M.D.; Joanne O’Sullivan-Oliveira, Ph.D., F.N.P.,B.C.; Sonja Ziniel, Ph.D;

Patrice Melvin, M.P.H; Paul Khairy, M.D., Ph.D.; Rebecca O’Brien, M.D.; Romi Webster, M.P.H., M.D.; Michael J. Landzberg, M.D.; Gregory Sawicki, M.P.H., M.D.

From the Departments of Cardiology, Medicine and Surgery, Children’s Hospital Boston, the Department of Pediatrics, Harvard Medical School, Boston, MA.

CHB Provider Survey

• Cross sectional web based multiple-choice survey• Outpatient clinicians at CHB (care for pts >11 years of

age) across all specialties– Staff physicians– Nurses– Physician assistants– Social workers

• IRB approved study• Response rate overall 76% (72-100%)

Provider Demographics

Providers differ in triggers for transfer to adult care

Combined MD PA RN SW P value

Age 79 73 74 82 90 NS

Adult Co-morbidities 77 80 74 80 71 NS

College graduation 77 55 74 74 78 .002

Pregnancy 58 53 70 64 49 NS

Marriage 56 53 60 65 36 .013

Alcohol/illicit drugs 29 21 35 39 20 .036

High School Graduation

16 5 48 20 20 .001

Percentage of each provider group responding to whether the characteristic should require transfer to adult centered provider

BARRIERS Combined MD PA RN SW P value

Parents attachment to hospital/ provider

96/95 98/95 91/100 96/95 92/92 ns

Pt attachment to provider

95 94 95 95 97 ns

Pt cognitive delay 86 86 86 85 84 ns

Provider attachment to pt/family

79 78 57 78 92 .018

Family non-compliance with transfer

78 72 71 83 84 ns

Unstable medical condition

68 68 77 61 87 .015

Lack of qualified adult providers

66 75 29 63 67 .006

Insurance issues 37 32 23 42 42 ns

Percentage of providers reporting witnessing or experiencing these barriers to transfer of care to adult care providers

Age Appropriate Care

• 43% of clinicians felt they could provide age appropriate care to pts >25 years of age

• 23% of clinicians felt they could provide age appropriate care to pts >50 years of age

• Additional analyses of those clinician without adult internal medicine training – 20% felt they could provide age appropriate care to pts

>30 years of age– 12% thought they could provide age appropriate care

to pts >40 years of age

Of the 58% who assess skills 95% assess informally

At what age do your patients start transitioning (self management) skills assessment and or education?

0%

10%

20%

30%

40%

50%

60%

70%

< 11 years 11-16 years 17-18 years 19-21 years >21 years Don't know

Age

% o

f re

spo

nd

ents Combined

MD

PA

RN

SW

Do We Know Adult Provider Expectations?

• Pediatric providers had differing ideas regarding knowledge, independence

• Patients move to other parts of the country – perhaps other providers differ from our local colleagues

Hait JPGN 2009

Format

• 1134 adult GI providers identified by AGA membership directory

• Solicited by email - electronic survey

• Questions regarding young adult patients transferring INTO practice

• Asked if issue was important (1 to 5) and if often problematic (yes/no)

Demographics of adult GI responders N=363 (34%)

Most problems reported in:

% of subjects that reported a problem

Issue Mean importance (± SD)

68%Patients should know the name, dose and major side effects of each medication they are taking.

4.6

(± .65)

55%

Patients should be able to relate highlights of their medical history, such as onset, surgeries and procedures.

4.5

(± .62)

53%

It is important that the pediatric gastroenterologist provide a medical summary prior to first visit with an adult provider.

4.6

(± .80)

52%

Patients should have knowledge of the impact of smoking, drugs and alcohol on their health.

4.6

(± .64)

Least problems reported in:

% of subjects that reported a problem

Issue Mean importance

(± SD)

21%

Patients should be able to research their illness outside the office visit.

3.6

(± .98)

19%

Patients should be able to identify persons involved in their health care (both family and professionals)

4.4

(± .66)

16%

Patients should be able to attend the visit by themselves.

3.1

(± 1.1)

13%

Patients should be able to undergo procedures under conscious sedation.

3.8

(± 1.1)

Specific issues in adolescents

Yes

Do you feel it is important for an adult gastroenterologist to have knowledge of medical aspects (i.e. growth) in IBD in adolescents?

93%

Do you feel you have that knowledge?

Do you feel it is important for an adult gastroenterologist to have knowledge of developmental issues in adolescents?

86%

Do you feel you have that knowledge?

70%

42%

Patient Surveys

• Ambulatory setting, age >9• 294 surveys (82%) returned

• Medication name, dose, side effect (fill in before seeing provider)

Fishman JPGN 2011

Patients tended to know name and dose of medication (78% overall)

When do patients take over care from their parents?

Health Maintenance behaviors regarding medication, during clinic visit, between visit

1 my parents only2 mostly my parents3 we share equally4 mostly me5 I totally do it myself

van Groningen IBD 2012

Children's Responsibility by Age Medication-Related Behaviors

0%

20%

40%

60%

80%

100%

10-

12

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>21 10-

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13-

15

16-

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19-

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>21 10-

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13-

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>21

Order Refills Remember To Take

Medications

Go To Pharmacy

Percentage of patients of each reporting “mostly me” or “I totally do it myself” when asked who usually does these tasks

Percentage of patients of each age reporting “mostly me” or” I totally do it myself” when asked who usually contact the doctor if there is a problem between visits, who schedules appointments, who remembers appointments, and who gets you to the appointments.

Children's Responsibility by Age Visit-Related Behaviors

0%

20%

40%

60%

80 %

100%

10-

13-

16-

19-

>21 10

-

13-

16-

19-

>21 10

-

13-

16-

19-

>21 10

-

13-

16-

19-

>21

Prepares

Questions

Main Talking Answers

Questions

Asks Questions

Percentage of patients of each reporting “mostly me” or “I totally do it myself” when asked who usually does these tasks

Concluding thoughts

Helpful to have evidence that includes:•Input from all stakeholders

– Adult providers– Parents– Post transition patients– Pediatric providers

•Baseline information •Specific information

ReferencesHait EJ, Barendse RM, Arnold JH, Valim C, Sands BE, Korzenik JR, Fishman LN. Transition of adolescents with IBD from pediatric to adult care: a survey of adult gastroenterologists. J Pediatr Gastroenterol Nutr. 2009; 48:61-65.

Fernandes S, Fishman LN, O’Sullivan-Oliveira J, Ziniel S, Melvin P, Khairy P, O’Brien R, Webster R, Landzberg M, Sawicki G. Current practices for the transition and transfer of patients with a wide spectrum of pediatric-onset chronic diseases: Results of a clinician survey at a free-standing pediatric hospital. Int J Child Adol Health 2010 3(4): 507-517.

Fishman, LN, Houtman D, van Groningren JT, Arnold J Ziniel S. Medication Knowledge: an Initial Step in Self-management for Adolescents and Young Adults with Inflammatory Bowel Disease. JPGN 2011 53(6):641-5.

Ref cont.Fernandes SM, Lanzberg MJ, Fishman LN, Khairy P, Sawicki GS, Ziniel S, Melvin P, OSullivan-Oliveira J, Greenspan P, Bhatt AB. Clinician perceptions of transition of patients with pediatric-onset chronic disease to adult medical care: Comparing a pediatric facility integrated within an adult institution with a free-standing pediatric hospital. Int J Child Adolesc Health 2012;5(3): in press.

van Groningen J, Ziniel S, Arnold J, Fishman LN. When independent health care behaviors develop in adolescents with inflammatory bowel disease. Inflamm Bowel Dis 2012: in press

O’Sullivan-Oliveira J, Fernandes SM, Borges LF, Fishman LN. Transition of Pediatric Patients to Adult Care: An Analysis of Provider Opinion Across Discipline and Role. Ped Nurs 2012: in press