1. Written Care Plans for Children with Chronic Conditions: What Do Families Think? Linda Barnhart Shervin Churchill Jean Popalisky Nanci Villareale June 24, 2006

2. Purpose of Presentation Briefly describe Washington State Children with Special Health Care Needs Program Briefly describe Washington State Children with Special Health Care Needs Program Share results of Parent Survey on Written Care Plans Share results of Parent Survey on Written Care Plans

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

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

5. Develop Develop and promote resource materials for families and professionals

6. Support Public Health Nurses in Local Health Departments to provide: nursing assessment, interventions & care coordination

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

8. Input from providers “Care Coordination for CSHCN in Washington State is fragmented.” WISE Grant 2001-2005 finding “Care Coordination for CSHCN in Washington State is fragmented.” WISE Grant 2001-2005 finding “Care Coordination is needed but is time-consuming…” “Care Coordination is needed but is time-consuming…” Medical Home Survey of providers 2005

9. Input from families Kate’s story Kate’s story “The agencies did not coordinate or communicate with each other… we were mired in paperwork.” “The agencies did not coordinate or communicate with each other… we were mired in paperwork.”

10. Receiving input from parents Care Plan Survey for parents of children with special health care needs -- 2006 Care Plan Survey for parents of children with special health care needs -- 2006

11. Objectives Survey parents of children with special health care needs (CSHCN) to explore: Perceptions about written care plans (WCP) including purposes and uses Perceptions about written care plans (WCP) including purposes and uses Beliefs about developing and maintaining a WCP Beliefs about developing and maintaining a WCP Resources that would be useful for parents Resources that would be useful for parents

12. Methods Web-based survey Web-based survey Parents of CSHCN, birth to 21 years Parents of CSHCN, birth to 21 years Washington State residents Washington State residents Conducted Feb-March 2006 (9 weeks) Conducted Feb-March 2006 (9 weeks) Publicized through Publicized through – Parent organizations and support groups – Public health nurses – Selected clinics at Children’s Hospital

13. Limitations Web based survey Web based survey Available only in English Available only in English Self-selected participants Self-selected participants Impossible to calculate response rate Impossible to calculate response rate Results are descriptive and qualitative, no statistical significance is associated with any of the reported results. Results are descriptive and qualitative, no statistical significance is associated with any of the reported results.

14. Results – Sample Description 134 respondents Place of residence: Place of residence: –Western WA: 79% –Central WA: 8% –Eastern WA: 13% Female: 94% Female: 94% 30-50 yrs old: 87% 30-50 yrs old: 87% Post secondary education: 86% Post secondary education: 86%

15. Child Characteristics – Age Distribution

16. Child’s chronic condition description Main diagnosis Main diagnosis Indicate if parent felt the child had Indicate if parent felt the child had –physical health needs –emotional or behavioral needs, and/or –developmental delay or developmental disability. How long child has had special health care needs How long child has had special health care needs How often their child’s condition changes How often their child’s condition changes

17. Condition Classification by Parent* Developmental delay80%Developmental delay80% Emotional/behavioral 54%Emotional/behavioral 54% Physical health needs 51%Physical health needs 51% * Not mutually exclusive

19. Results- Questions on care planning Parent had main duty to coordinate the care of their child: 95% Parent had main duty to coordinate the care of their child: 95% Had WCP at the time of the survey: 31% Had WCP at the time of the survey: 31% Physical Health Needs*40% Physical Health Needs*40% Emotional Behavioral*35% Emotional Behavioral*35% Developmental Delay*30% Developmental Delay*30% *Not mutually exclusive *Not mutually exclusive

20. Proportion with WCP by age group Age Group:Percent with WCP Age Group:Percent with WCP 0 – 36 months18% 37 months – 5 years32% 6 – 10 years21% 11 – 14 years37% 15 – 21 years48%

21. Who Developed the WCP? Parent alone developed WCP: 26%* Parent alone developed WCP: 26%* Parent had help: 74%** Parent had help: 74%** –34% had help from doctor’s office –28% had help from DDD –24% had help from a school nurse or school personnel * Of those who had WCP’s (n=40, 31% of sample) ** 44% had some help, 30% someone developed entire WCP

22. How did the WCP help the parents? Helped keep all the important information in one place Helped keep all the important information in one place Did not have to repeat the information Did not have to repeat the information Helped all the health care providers understand the plan Helped all the health care providers understand the plan A few parents said the plan did not help them A few parents said the plan did not help them

23. Importance of written care plans to families and its uses * 86% believed it was important to have a WCP 86% believed it was important to have a WCP 67% thought a WCP would help the quality of health care their child receives in different settings such as home, school and health care settings 67% thought a WCP would help the quality of health care their child receives in different settings such as home, school and health care settings * All survey participants, regardless of whether or not they had a WCP

24. How families would use WCP’s * Assist with transitions hospital to home, school, camp, or new doctor74% * Educate health care professionals73% * Facilitate communication between myself and health care professionals77% * Keep a list of care givers and contacts58% * Organize care for my child73%

25. How families would use WCP’s more ways … * Share with others involved in care of my child77% * Summarize health information such as medications, therapies and treatments79% * Summarize other information such as how my child communicates or his likes and dislikes64% * Use as a tool to plan for the future59% * Use in emergency situations81%

26. Development and maintenance of written care plans Who should be in charge of developing WCP? Who should be in charge of developing WCP? –Parent working with health care professional82% –Parent alone15% –Health care professional alone2%

27. Development and maintenance of written care plans Who should be in charge of updating WCP? Who should be in charge of updating WCP? –Parent working with health care professional77% –Parent alone18% –Health care professional alone2%

28. Development and maintenance of written care plans How often should the WCP be updated? How often should the WCP be updated? –As child’s needs change57% –Annually14% –Every 3 months9% –Every 6 months9% –Every time child in seen by doctor7%

29. Where should the WCP be? Electronic, on a private computer at home36% Electronic, on private computer at the doctor's office23% On paper, at home54% On paper, at the doctor's office in medical chart41% Web-based with password access for parent, doctor and others chosen by parent56% Development and maintenance of written care plans

30. Learning how to Develop a WCP A form or forms that could be filled out80% Information from a health care provider47% Information from a parent with experience44%

31. Learning how to Develop a WCP more ways … A class for parents46% Web site with information about care plans70% Samples of written care plans78%

32. Theme from parent thoughts and comments General Perceptions: Supportive of the idea of WCP’s Supportive 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 the different doctors my son sees every month.“

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

34. Theme from parent thoughts and comments Practical suggestions: Simple, brief, flexible Simple, brief, flexible Templates and examples would help Templates and examples would help Web-based or on a computer for easy use & updates Web-based or on a computer for easy use & updates (Potential bias of web survey population ) (Potential bias of web survey population ) Need for training Need for training

35. Theme from parent thoughts and comments A few parents had concerns: Who controls the plan Who controls the plan Are WCP’s somehow tied to funding? Are WCP’s somehow tied to funding? Recommended services may not be available Recommended services may not be available

36. Discussion and Recommendations Training parents and professionals about WCP’s as a Planning and Communication Tool Training parents and professionals about WCP’s as a Planning and Communication Tool Research where WCP’s could be kept, where they could be secure and accessible Research where WCP’s could be kept, where they could be secure and accessible

37. Resources and Information www.cshcn.org www.cshcn.org www.cshcn.org –Can find complete results of care plan survey –Care coordination resources www.doh.wa.gov/cfh/mch/cshcnhome2.htm www.doh.wa.gov/cfh/mch/cshcnhome2.htm www.doh.wa.gov/cfh/mch/cshcnhome2.htm –Links to resources and information about CSHCN in Washington State

38. Contact information Washington State Department of Health Washington State Department of Health Linda.Barnhart@doh.wa.gov Children’s Hospital & Regional Medical Center Children’s Hospital & Regional Medical Center Jean.Popalisky@seattlechildrens.org