1. Best Practices in Disease Management
Deanna Bell, M.D., F.A.A.P.
Medical Director, MHIP
Tennessee Chapter of the American Academy of Pediatrics

2. Goals of D70 Grant
“ to improve medical home provision for children and youth with special healthcare needs by promoting systems and service integration for children through education of parents and providers on medial home concepts of team-based care, care coordination, and disease management.”

3. Who are Your CYSHCN?
To be able to institute evidence-based protocols and management of high risk patients, you must have a system of identification of them.
82% are under 200% of the FPL
78% are fully covered or supported by Medicaid
54% do not have access to a medical home
12% have no usual source of care
61% had access to care coordination when needed
23% had any help arranging or coordinating care
Top 10% most costly children lead to 70% of pediatric medical expenditures.
49% of top decile in 2000 were in the top decile in 2001.
Cost Predictors: older age
special needs
functional limitations
higher psychosocial morbidity

4. MOC QI Aim #3 ----------------------------------------- High Risk Registry Formation
One of the measurable goals of this MOC project is to have practices form a registry of the children and youth with special healthcare needs they care for. Since the care of this group is what we are trying to impact, it is important that we review how we are defining this cohort.

5. Ways to ID CYSHCN Screeners (CSHCN Screener, QuICCC, QuICCC-R)
ICD-9 lists (NHIS, CAHMI, NDP)
Administrative with risk stratification (3M-CRG)
Physician Referral
Payer referral
Pharmacy utilization

6. Administrative: 3M CRG Combines Dx and consequences based approaches
Uses ICD-9 and procedural codes to classify cases
Requires:6 months of claims data
2 or more encounters with same Dx code
Takes into account: type and number of Dx, recurrences, number of acute exacerbations, cost/type/combination/frequency of services
Strengths: identifies population and individuals; assigns severity rating; assigns groupings:
ICD-9 self explanatory
healthy/acute/chronic

7. Survey-based Methods QuICCC: 41 question survey sequence
QuICCC-R: 16 question survey sequence
CSHCN Screener: 5 questions survey sequence
All do not require formal Dx
All 3 part sequence: consequences/presence of condition/duration
Qualify if positive answers to one or more sequences
All identify population cohorts and can identify individuals
QuICCC and QuICCC-R: interviewer administered only
QuICCC: questionnaire for Identifying Children with Chronic Conditions-Revised
CSHCN Screener: Children with Special Health Care Need Screeners
CSHCN Screener can be filled out by parent, mailed. Etc.

8. Comparison of Administrative and Survey-based methods
Of CSHCN identified by ICD-9 lists
Only 52-53% met CSHCN criteria by survey methods
Of CSHCN identified by Survey Methods
20-24% were not identified by ICD-9 lists
Concordance between CRG/CSHCN Screener/QuICCC-R= %
This is due to many children with chronic illness not having an official diagnosis

9. CSHCN identified by Survey and not by Administrative data are likely to:
Have developmental or emotional disorders not coded in encounter records
Use services not reimbursed under benefit structure
Have multiple health issues that include a range of educational, developmental, and mental health service needs and consequences
Be in transition between health plans or PCPs
#2 This is why including those who screen positive for barriers to compliance should be included

10. MCHB/AAP definition CYSHCN
“ those who have or are at increased risk for a 
chronic physical,  developmental, behavioral, or
emotional condition and who also  require health and
related services of a type or amount beyond  that 
required by children generally.”
McPherson M, Arrange P, Fox H, et al. “A new definition of children with spe cial health care needs”, Pediatrics, 1998; 102: 137‐140.  
Consequences-based definition endorsed by MCHB and AAP.
For reasons of time, practicality, and concordance between prevailing methods, We suggest the CSHCN Screener be the tool used.

11. Children with Special Health Care Needs (CSHCN) Screener©
non-condition specific, consequences- based
identifies children across the range and diversity of childhood chronic conditions and special needs
identified on the basis of one or more current functional limitations or service use needs
Scoring in based on positive cluster (e.g. 5 and 5a= positive; or 1 , 1a, and 1b=positive)
Child and Adolescent Health Measurement Initiative (CAHMI),

12. Children with Special Health Care Needs (CSHCN) Screener©
1. Does your child currently need or use medicine prescribed by a doctor (other than vitamins)? ٱ Yes Go to Question 1a ٱ No Go to Question 2 1a. Is this because of ANY medical, behavioral or other health condition? ٱ Yes Go to Question 1b ٱ No Go to Question 2 1b. Is this a condition that has lasted or is expected to last for at least 12 months? ٱ Yes ٱ No 2. Does your child need or use more medical care, mental health or educational services than is usual for most children of the same age? ٱ Yes Go to Question 2a ٱ No Go to Question 3 2a. Is this because of ANY medical, behavioral or other health condition? ٱ Yes Go to Question 2b ٱ No Go to Question 3 2b. Is this a condition that has lasted or is expected to last for at least 12 months? ٱ Yes ٱ No 3. Is your child limited or prevented in any way in his or her ability to do the things most children of the same age can do? ٱ Yes Go to Question 3a ٱ No Go to Question 4 3a. Is this because of ANY medical, behavioral or other health condition? ٱ Yes Go to Question 3b ٱ No Go to Question 4 3b. Is this a condition that has lasted or is expected to last for at least 12 months? ٱ Yes ٱ No 4. Does your child need or get special therapy, such as physical, occupational or speech therapy? ٱ Yes Go to Question 4a ٱ No Go to Question 5 4a. Is this because of ANY medical, behavioral or other health condition? ٱ Yes Go to Question 4b ٱ No Go to Question 5 4b. Is this a condition that has lasted or is expected to last for at least 12 months? ٱ Yes ٱ No 5. Does your child have any kind of emotional, developmental or behavioral problem for which he or she needs or gets treatment or counseling? ٱ Yes Go to Question 5a ٱ No 5a. Has this problem lasted or is it expected to last for at least 12 months? ٱ Yes ٱ No
See Children with Special Healthcare Needs Screener Handout

13. CSHCN Screener© Grading
All three parts of at least one screener question (or in the case of question 5, the two parts) must be answered “yes” in order for a child to meet CSHCN Screener© criteria for having a chronic condition or special health care need.
The CSHCN Screener© has three “definitional domains:” 1) Dependency on prescription medications. 2) Service use above that considered usual or routine. 3) Functional limitations. The definitional domains are not mutually exclusive categories.

14. Entry Criteria for Registry
Positive screen for barriers to compliance
Positive CYSHCN screen
Physician referral
Health plan referral
Diagnosis list
All should receive compliance barrier screen and should have individual plans of care written and communicated to team.
Subdivide by separate disease-specific registries
See packets

15. Tracking Registry
Once your chronic or complex illness cohort is identified, you must decide on a tracking system.
Most EMRS have flag systems, so a flag or icon can be added to these patients
Many practices on paper charts use stickers of a specific color on the patient’s chart.
There needs to be communication of Registry status to patients and staff

16. High Risk Registry Tracking Tool
TNAAP
High Risk Registry Tracking Tool
Patient Name/DOB
Emergency Plan Updated Last
Plan of Care Last updated:
Disease States
Follow up Interval
Last appointment
Last WCC
Influenza Immunization Given? (Y/N)
Barrier to Compliance Screen Last Given
Disease Specific Plan of Care Up-to-Date? (Y/N)
Needs:
Tools such as these are helpful in tracking compliance with care plans for multiple patients.

17. MOC QI Aim #3 Measurements
Report baseline registry formation based on objective screening (20 charts, alright if 0).
Institute CSHCN screener and/or other
Enter children with positive screens into registry.
Tag record with identifier positive or negative
Monthly, select 10 charts from general population that month to audit for use of CSHCN Screener or other evidence of screening for registry entry.

18. Care Coordination Framework
Team-based Communication
Disease management
Case Management
Patient
For the purposes of this curriculum:
Case Management: screening for and overcoming barriers to compliance
Disease management: a team approach to evidence-based care. Where evidence base is lacking, a team approach to supporting a care path based on shared knowledge of a patient and his/her disease process.
Communication: focused on timely information exchange with entities to which a provider refers.

19. What is Disease Management?

20. Disease Management
“Disease management supports the physician or practitioner/patient relationship and plan of care, emphasizes prevention of exacerbations and complications using evidence –based practice guidelines and patient empowerment strategies, and evaluates clinical, humanistic, and economic outcomes on an ongoing basis with the goal of improving overall health”
Disease Management Association of America. DMAA Definition of Disease Management. {Accessed: January 26,2007};available from :

21. What are the characteristics of successful disease management programs?

22. Successful Disease Management Programs
Individualized Case Management
In-person contacts
Focus on hospital discharges
Encourage use of cost effective therapies
Simple
Patient Centered
Large/overarching
Identified measurement parameters
Incentives
Mathmatica: -Disease Management-Does it work? ***
Mackenzie article on features of successful DzMgt programs ***
How defined success:***
Individualized Case Management: plans of care take the patient into account as an individual. Health literacy, social, emotional, medical, developmental, educational realms are addressed and incorporated as part of the care plan.
In-person contacts: relationship, face-to-face contact, and accountability with clearly defined roles are important.
Focus on hospital discharges: most acute processes and navigating plan of care for most severe/costly domains of a patient’s illness are important.
Encourage patients to use cost effective therapies by reducing cost sharing for these components
Simple: for patient and staff
Patient Centered
Large/overarching: to achieve statistical significance and recruit supportive resources.
Identified measurement parameters
Incentives
We cannot manipulate all these variables, but we can influence some.

23. Context of Studies Adult cohorts Pediatric Cohorts
Large volumes of same diagnosis
Good evidence base for therapies
Costs/Morbidity center around large volume cohorts
Few large volume cohorts
Many severe illnesses without standardized evidence base for therapy
Cost/Morbidity located in 10% of children, small cohorts
Focus on hospitalization: most individuals hospitalized are readmissted in 9 months, acute problems not resolved at time of discharge, patients lack adequate support or self care skills at the time of discharge.
Focus on cost savings measures: many incentives are there for meds, because 80% of CYSHCN are supported by Medicaid.

24. Considerations in pediatrics
Disease management strategies in pediatrics must be applicable across a variety of disease states.
Disease management in pediatrics requires both population approaches and individual case management approaches
Processes in pediatrics must be fluid enough to respond to the situational needs of highly specialized/varied patients.
Formalized disease management in primary care
Formalized disease management programs are often a foreign concept in the private office setting, so it is important that we spend time undergirding changes in job roles and processes that need to take place.
Source: AHRQ technical review. A critical Analysis of care coordination strategies for children with special healthcare needs.
Quote: Will never be able to investigate most successful strategies in disease management until disease-specific program are abandoned.

25. Disease Manager Functions
Support evidence based care and individual plans of care
Disease-specific knowledge a must
Provides education for self-management
Compliance tracking and reassessment a large role
Works with MD and case manager to optimize access, compliance, and education

26. Disease Management Team Tasks
Patient screening and registry formation
Evaluates patient/family comprehension of plan of care
Performs disease education as appropriate
Refers patient to case manager as risks for noncompliance identified

27. Disease Management Team Tasks
Tracks and monitors patient compliance with care plans by registry
Augments communication by keeping team members aware of patient status
Assists with transitions to/from hospital/adult care
Authority to schedule override

28. Disease Management Workflow
Assess
Monitor/Evaluate/Adjust
Evidence-based plan
Maintain
Registry
Support self Management
Communicate
Plan
Link Community Resources
Execute

29. Keep it Simple Form your registry
Support the evidence base with process
Educate and involve the team
Use Tools
Continually reassess
Set regular communication times

30. Assess
Record which diseases in your practice are leading to increased service utilization or functional capacity limitation
Review the evidence base for these diseases
Form your registry (General or disease-specific)
No one is going to know your practice population better than you do, so you can take a look at the indices you would like to improve and let that guide your protocol development.
Involving payers in consideration of the disease states you want to monitor may be a key to increased reimbursements.

31. Evidence-based plan Support evidence base with process
Identify essential action steps that will support evidence base
Form office procedure around information exchange that must take place to support evidence-based intervention
Describe the responsibilities in this work-flow by job description
Don’t forget case management plan

32. Communicate Plan Physician Disease Management
Case Management/Linkage with Resources
Referral coordinator/other staff
Patients
PHYSICIAN MUST HAVE WRITTEN CARE PLAN FOR PATIENTS
Explain division of labor by job type.
General diagnosis cohort procedures are important to discuss ahead of time.
However, written plan of care for each individual patient is essential to communicating the needs and individual nuances of care to the rest of the team.

33. Execute
Processes for a diagnosis cohort or individual patient executed
Patient expectations communicated to patients
Team aware of plan and monitoring compliance

34. Link Community Resources
Screen for barriers to compliance
Create care plan for overcoming barriers
Monitor patient compliance with this plan
Follow-up and reassess
Disease manager/nurse screen. Case Management Job role to conduct interview, create care coordination care plan, and follow-up.

35. Support Self Management
Written plan of care to patients
Assessment of health literacy for self management
Disease or patient-specific patient education for self management
Referral to case management as needed.
Disease Manager job role

36. Monitor/Evaluate/Adjust
Follow-up interval specified in patient plan of care or part of evidence-based care path
Track no shows and compliance with referrals
Maintain patient contact/Assure follow-up occurs
Reassess response to interventions
Adjust plan accordingly
Continually reassess for barriers to care
Physician establishes follow-up interval/plan
Disease manager tracks compliance with medical care plan.
Case Manager follows up on compliance with care coordination plan.
All reassess.

37. A written plan of care is essential to communicating patient specific expectations to all team members.
Your practice must decide what constitutes a finished plan of care.
Some examples follow.

38. Three types of plans for CYSHCN
Patient Summary: Problem list, PMH, Meds, Allergies, Specialists, Therapies, Typical Laboratory Values and Exam, Cultural and Social Considerations, Legal
Action Plan: today’s additions, changes
Emergency Plan

39. MOC QI Aim #4 ---------------------------------- Written plans of care for team
To be able to institute evidence-based protocols and management of high risk patients, you must have a system of identification of them.

40. MOC QI Aim #4 Measurements
Report baseline proportion of chronic disease registry patients with written plans of care on chart (20 patients from baseline chronic illness registry, alright if 0)
Institute team management strategies
Monthly, select 10 charts from patients seen in the chronic/complex disease registry to audit for presence of written plan of care
Wanted to keep open, so practices could address different disease states at their discretion.
May general care plan for all in the chronic/complex disease registry, or specify per disease.

41. Example Forms
You and your team must decide what constitutes a completed plan of care. At the very least, it should include the diagnosis, medications, therapies, referrals, and/or instructions for follow-up. Many practices will conduct a more extensive baseline emergency plan that is updated periodically and supplemented with visit-specific plans of care.

43. Baseline Measurements, 20 charts
Evidence of screening for barriers to compliance
Evidence of linking patients with barriers to compliance to community resources
Evidence of screening for CSHCN registry
Evidence of written care path in the record for those in CSHCN registry

44. Monthly Measurements 10 charts general population:
Were they screened for barriers to compliance?
Were they screened for CSHCN registry
10 charts with positive barrier to compliance screen:
Is there documentation of linking patient with a resource to overcome barrier to compliance?
10 charts CSHCN Registry:
Is there evidence of the written care plan you have agreed to use?

45. Overall AIM Statement
Involved practices will improve chronic disease registry formation by 50% by the end of data collection.
25% of registry patients of involved practices will have a care plan with therapeutic recommendations and/or goal by the end of data collection.
Involved practices will improve screening for risk factors for noncompliance by 50% by the end of data collection.
25% of patients with a risk factor for non-compliance will be linked with community resources needed to promote compliance by the end of data collection.

46. Requirements for MOC participation
Summit Participation
Baseline/follow-up NCQA PCMH Medical Home Survey
Baseline/monthly (4 month) data entry/analysis for QIDA parameters
Participation in 2 of 4 technical assistance webinars/conference calls
Participation in final QI Program Synopsis call/meeting
PCMH survey intended to be a GAP analysis. Can be used for NCQA certification in future.