Written Care Plans for Written Care Plans for Children with Chronic Children with Chronic Conditions: What Do Conditions: What Do Families Think?Families Think?

Linda BarnhartLinda BarnhartShervin Shervin ChurchillChurchillJean PopaliskyJean PopaliskyNanci VillarealeNanci Villareale

June 24, 2006June 24, 2006

Purpose of Purpose of PresentationPresentation

Briefly describe Washington State Briefly describe Washington State Children with Special Health Care Children with Special Health Care Needs ProgramNeeds Program

Share results of Parent Survey on Share results of Parent Survey on Written Care PlansWritten Care Plans

CSHCN Program in CSHCN Program in Washington StateWashington State

The Children with Special Health The Children with Special Health Care Needs Program (CSHCN) is Care Needs Program (CSHCN) is one of several programs in the one of several programs in the Office of Maternal and Child Office of Maternal and Child Health in the Division of Health in the Division of Community and Family Health.Community and Family Health.

The CSHCN Program The CSHCN Program serves children with serves children with special health care special health care needs and their needs and their families in many ways…families in many ways…

Develop Develop

and promoteand promote

resource resource

materials for materials for

families and families and

professionalsprofessionals

Support Support Public Public Health Health Nurses in Nurses in LocalLocalHealthHealthDepartmentDepartments to provide:s to provide:

nursing assessment, interventions & care coordination

AAP Policy Statement AAP Policy Statement on Care Coordinationon Care Coordination

““A process that A process that links children with links children with special health care special health care needs and their needs and their families to services families to services and resources in a and resources in a coordinated effort coordinated effort to maximize the to maximize the potential of the potential of the children and children and provide them with provide them with optimal health optimal health care.”care.”

Input from providersInput from providers

““Care Coordination for CSHCN Care Coordination for CSHCN in Washington State is in Washington State is fragmented.” fragmented.” WISE Grant 2001-2005 WISE Grant 2001-2005 findingfinding

““Care Coordination is needed Care Coordination is needed but is time-consuming…” but is time-consuming…” Medical Home Survey of providers 2005Medical Home Survey of providers 2005

Input from familiesInput from families

Kate’s storyKate’s story

“ “The agencies did The agencies did not coordinate or not coordinate or communicate with communicate with each other… we each other… we were mired in were mired in paperwork.”paperwork.”

Receiving input from Receiving input from parentsparents

Care Plan Survey for parents Care Plan Survey for parents of children with special health of children with special health care needs -- 2006care needs -- 2006

ObjectivesObjectives

Survey parents of children with special Survey parents of children with special health care needs (CSHCN) to health care needs (CSHCN) to explore:explore:

Perceptions about Perceptions about written written care planscare plans (WCP) including purposes and uses(WCP) including purposes and uses

Beliefs about developing and maintaining Beliefs about developing and maintaining a WCP a WCP

Resources that would be useful for parentsResources that would be useful for parents

MethodsMethods

Web-based surveyWeb-based survey Parents of CSHCN, birth to 21 yearsParents of CSHCN, birth to 21 years Washington State residentsWashington State residents Conducted Feb-March 2006 (9 weeks)Conducted Feb-March 2006 (9 weeks) Publicized throughPublicized through

– Parent organizations and support groupsParent organizations and support groups– Public health nurses Public health nurses – Selected clinics at Children’s Hospital Selected clinics at Children’s Hospital

Limitations Limitations

Web based surveyWeb based survey Available only in EnglishAvailable only in English Self-selected participantsSelf-selected participants Impossible to calculate response rateImpossible to calculate response rate Results are descriptive and Results are descriptive and

qualitative, no statistical significance qualitative, no statistical significance is associated with any of the is associated with any of the reported results.reported results.

Results – Results – Sample Sample DescriptionDescription

134 respondents134 respondents

Place of residence: Place of residence: – Western WA: 79%Western WA: 79%– Central WA: 8%Central WA: 8%– Eastern WA: 13%Eastern WA: 13%

Female: Female: 94% 94% 30-50 yrs old: 87%30-50 yrs old: 87% Post secondary Post secondary

education: education: 86% 86%

Child Characteristics – Age Child Characteristics – Age DistributionDistribution

9%n=12

18%n=23

15%n=19

30%n=3928%

n=37

0

5

10

15

20

25

30

35

0-36 Months 37 mo - 5 yrs 6-10 yrs 11-14 yrs 15-21 yrs

Age of Children

Pe

rce

nt

of

pa

ren

ts

Child’s Child’s chronicchronic condition condition descriptiondescription

Main diagnosisMain diagnosis Indicate if parent felt the child had Indicate if parent felt the child had

– physical health needs physical health needs – emotional or behavioral needs, and/oremotional or behavioral needs, and/or– developmental delay or developmental developmental delay or developmental

disability. disability. How long child has had special health care How long child has had special health care

needsneeds How often their child’s condition changesHow often their child’s condition changes

Condition Classification by Condition Classification by Parent*Parent*

• Developmental delayDevelopmental delay 80%80%

• Emotional/behavioral Emotional/behavioral 54%54%

• Physical health needs Physical health needs 51%51%

* Not mutually exclusive* Not mutually exclusive

Comparison with NS-CSHCN, WA sample: "Which of these statements best describes your child's

health care needs?"

37% 36% 33%

4%6%

27%

66%

1%0%

10%

20%

30%

40%

50%

60%

70%

change all thetime

change onlyonce in a while

are usuallystable

9-don’tknow/other

Care Plan survey

NS-CSHCN

Results- Questions on care Results- Questions on care planningplanning

Parent had main duty to coordinate the Parent had main duty to coordinate the care of their child: care of their child: 95%95%

Had WCP at the time of the survey: Had WCP at the time of the survey: 31%31%

Physical Health Needs*Physical Health Needs* 40%40% Emotional Behavioral*Emotional Behavioral* 35%35% Developmental Delay*Developmental Delay* 30%30%

*Not mutually exclusive*Not mutually exclusive

Proportion with WCP by age Proportion with WCP by age groupgroup

Age Group:Age Group: Percent with WCPPercent with WCP

0 – 36 months0 – 36 months 18%18%

37 months – 5 years37 months – 5 years 32%32%

6 – 10 years6 – 10 years 21%21%

11 – 14 years11 – 14 years 37%37%

15 – 21 years15 – 21 years 48%48%

Who Developed the Who Developed the WCP?WCP? Parent alone developed WCP: Parent alone developed WCP:

26%* 26%*

Parent had help: Parent had help: 74%** 74%**– 34% had help from doctor’s office34% had help from doctor’s office– 28% had help from DDD28% had help from DDD– 24% had help from a school nurse or 24% had help from a school nurse or

school personnelschool personnel

* Of those who had WCP’s (n=40, 31% of sample) * Of those who had WCP’s (n=40, 31% of sample) ** 44% had some help, 30% someone developed entire ** 44% had some help, 30% someone developed entire

WCPWCP

How did the WCP help the How did the WCP help the parents?parents?

Helped keep all the important Helped keep all the important information in one placeinformation in one place

Did not have to repeat the Did not have to repeat the information information

Helped all the health care Helped all the health care providers understand the planproviders understand the plan

A few parents said the plan did A few parents said the plan did not help them not help them

Importance of written care Importance of written care plans to families and its plans to families and its

usesuses**

86% believed it was important to have 86% believed it was important to have a WCPa WCP

67% thought a WCP would help the 67% thought a WCP would help the quality of health care their child quality of health care their child receives in different settings such as receives in different settings such as home, school and health care settings home, school and health care settings

* All survey participants, regardless of whether or not * All survey participants, regardless of whether or not they had a WCPthey had a WCP

How families would use WCP’sHow families would use WCP’s

* Assist with transitions hospital to home, school, camp, or new doctor 74%

* Educate health care professionals 73%

* Facilitate communication between myself and health care professionals 77%

* Keep a list of care givers and contacts 58%

* Organize care for my child 73%

How families would use WCP’sHow families would use WCP’s more ways …more ways …* Share with others involved in care of my

child 77%

* Summarize health information such as medications, therapies and treatments 79%

* Summarize other information such as how my child communicates or his likes and dislikes 64%

* Use as a tool to plan for the future 59%

* Use in emergency situations 81%

Development and Development and maintenance of written care maintenance of written care plansplans Who should be in charge of Who should be in charge of

developing WCP?developing WCP?

– Parent working with health care Parent working with health care professionalprofessional 82%82%

– Parent aloneParent alone 15%15%– Health care professional aloneHealth care professional alone 2%2%

Development and Development and maintenance of written care maintenance of written care plansplans Who should be in charge of updating Who should be in charge of updating

WCP?WCP?

– Parent working with health care Parent working with health care professionalprofessional 77%77%

– Parent aloneParent alone 18%18%– Health care professional aloneHealth care professional alone 2%2%

Development and Development and maintenance of written care maintenance of written care plansplans How often should the WCP be updated?How often should the WCP be updated?

– As child’s needs changeAs child’s needs change 57%57%– AnnuallyAnnually 14%14%– Every 3 monthsEvery 3 months 9%9%– Every 6 monthsEvery 6 months 9%9%– Every time child in seen by doctorEvery time child in seen by doctor 7%7%

Where should the WCP be?Where should the WCP be?Electronic, on a private computer at home 36%

Electronic, on private computer at the doctor's office 23%

On paper, at home 54%

On paper, at the doctor's office in medical chart 41%

Web-based with password access for parent, doctor and others chosen by parent 56%

Development and Development and maintenance of written maintenance of written care planscare plans

Learning how to Develop a Learning how to Develop a WCPWCP

• A form or forms that could be filled out 80%

• Information from a health care provider 47%

• Information from a parent with experience 44%

Learning how to Develop a Learning how to Develop a WCPWCP

more ways …more ways …

• A class for parents 46%

• Web site with information about care plans 70%

• Samples of written care plans 78%

Theme from parent Theme from parent thoughts and commentsthoughts and comments

General Perceptions:General Perceptions:

Supportive of the idea of WCP’sSupportive of the idea of WCP’s

Thought WCP’s would be beneficial Thought WCP’s would be beneficial

““This would be most helpful when seeing This would be most helpful when seeing the different doctors my son sees every the different doctors my son sees every month.“month.“

““We find ourselves visiting a We find ourselves visiting a dizzying array of medical dizzying array of medical professionals … I realized professionals … I realized there were tests called for there were tests called for long ago that never occurred. long ago that never occurred. If a web-based site were If a web-based site were developed that could alert me developed that could alert me of the need for follow-up of the need for follow-up testing, perhaps … these testing, perhaps … these important tests wouldn't be important tests wouldn't be missed. “ --a parentmissed. “ --a parent

Theme from parent Theme from parent thoughts and commentsthoughts and comments

Practical suggestions:Practical suggestions:

Simple, brief, flexibleSimple, brief, flexible Templates and examples would Templates and examples would

helphelp Web-based or on a computer for Web-based or on a computer for

easy use & updateseasy use & updates

(Potential bias of web survey population )(Potential bias of web survey population )

Need for trainingNeed for training

Theme from parent Theme from parent thoughts and commentsthoughts and comments

A few parents had concernsA few parents had concerns::

Who controls the planWho controls the plan Are WCP’s somehow tied to Are WCP’s somehow tied to

funding?funding? Recommended services may not be Recommended services may not be

available available

Discussion and Discussion and RecommendationsRecommendations

Training parents and professionals Training parents and professionals about WCP’s as a about WCP’s as a Planning and Planning and Communication ToolCommunication Tool

Research where WCP’s could be Research where WCP’s could be

kept, where they could be kept, where they could be secure secure and accessible and accessible

Resources and Resources and InformationInformation

www.cshcn.orgwww.cshcn.org– Can find complete results of care plan Can find complete results of care plan

surveysurvey– Care coordination resourcesCare coordination resources

www.doh.wa.gov/cfh/mch/cshcnhome2.hwww.doh.wa.gov/cfh/mch/cshcnhome2.htmtm– Links to resources and information about Links to resources and information about

CSHCN in Washington StateCSHCN in Washington State

Contact informationContact information

Washington State Department of Washington State Department of Health Health Linda.Barnhart@doh.wa.govLinda.Barnhart@doh.wa.gov

Children’s Hospital & Regional Medical Children’s Hospital & Regional Medical CenterCenterJean.Popalisky@seattlechildrens.orgJean.Popalisky@seattlechildrens.org