Connected Care
Care Coordination for
Children with Complex
Healthcare Needs
Presented by: Lynne McKinlay
Date: February 20...
Marine Pilot
» “A pilot is a mariner who
guides ships through
dangerous or congested
waters, such as harbours or
river mou...
A&E presentations:
Psychosocial factors:
Sole parent family; primary carer with comorbid medical
and mental health needs; ...
Children with Medical Complexity
1.
2.
3.
4.

chronic, severe health conditions
substantial health service needs
major fun...
Benefits of Care Coordination
» Palfrey, 2004 – primary care model commencing in 1998
1) the services of a designated pedi...
Benefits of Care Coordination
» Palfrey, 2004 – Findings
» “an individualised health plan has been shown to improve
commun...
Benefits of Care Coordination
» Rosenbaum et al, 2008 – Complex Care Coordination Expert
Panel
» some evidence of signific...
Proposed Complex Care Coordination Model
» (Rosenbaum et al, 2008 – Expert Panel)

» 4 goals:
1. Improve the quality of li...
Proposed Complex Care Coordination Model
»

(Rosenbaum et al, 2008 – Expert Panel)

» 4 key strategies:
1. A Key Worker ro...
Ideal Model of Care for CMC
»
1.
2.

3.
4.

» (Berry et al, 2013)
“Best practices not yet identified, but the ideal model ...
Benefits of Care Coordination
» “The potential value from coordinating care for CMC (children
with medical complexity) goe...
Critical Components
»

Coordinated Care – care planning decisions are communicated and
actively discussed with the family ...
Connected Care Purpose
»

To measurably improve the
outcomes for children with
chronic and complex health care
needs

»

t...
Eligibility Criteria

Rosenbaum et al, 2008
Eligibility Criteria
Principles
»

»
»
»
»

Family centred care
› Family is the primary source
of experience for a child
› Families have the ca...
Queensland
» Second largest state or territory in
land mass
» Third largest population
» Third largest city

» Largest reg...
Connected Care Program
Identify a “Care Coordinator” for
each child from within
»Connected Care
»Mater Complex Care team
»...
Care Plan
»
»
»
»

Summary
Current Management
Concerns and Goals
Functional Assessment

»
»
»

Family Care Plan diary
Emer...
Connected Care Program
Identify all specialists
»regularly involved in the care of
the child
»a “Lead Specialist”
› depend...
Leading Lights

Two lights are positioned near one another. One, called the front light, is lower
than the one behind, whi...
Hub responsibilities
Intake and database
Resource Directories
Coordination of multiple
clinic appointments
Training
P...
Outside of Hours Contact
»Early identification of clinical risk and anticipation of needs
»Standardised process with local...
Program Evaluation
»Partnership and participation in health care planning (adapted to
use by families of dependent childre...
Pilot Phase of Program Development
»Identify small group of patients - statewide
»Identify Lead Specialist and others in t...
Allegory
»

Literary device

»

A story, poem, or picture which can be interpreted to reveal a hidden
meaning, typically a...
Pilot Participants
» 29 Participants
» Resident in 8 HHS:
› Cairns and Hinterland
› Cape York
› Central Qld
› CHQ
› Darlin...
Pilot – patient and service characteristics
» 9 children identify as ATSI (31%)
» 3 children in care of DOCS – although on...
Results – Family Satisfaction
»
»

4 point Likert scale – all responses in either most favourable or 2nd most favourable
c...
Queensland Connected Care Program
» Reference committee with family involvement
» Articulated vision, philosophy and partn...
Care
Management

Care
Coordination
Level of CCP Input

Partnership

Self
Management

Discharge

Model of Care
Options

San...
Key References
»

»

»

»

Peter S, Chaney G et al. Care Coordination for Children with Complex
Care Needs Significantly R...
Acknowledgements
»
»
»
»
»

The children and families who
participated in the pilot program
Paul Sanders - Family Advisory...
Lynne McKinlay, Royal Children’s Hospital Brisbane: Connected Care - A New System of Care for Children with Complex Health...
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Lynne McKinlay, Royal Children’s Hospital Brisbane: Connected Care - A New System of Care for Children with Complex Health Care Needs and their Families

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Dr Lynne McKinlay, Director, Department of Paediatric Rehabilitation & Director, Connected Care Program & Medical Lead, iEMR Project Royal Children’s Hospital Brisbane & Clinical Director, Queensland Cerebral Palsy and Rehabilitation Research Centre delivered this presentation at the 2014 Hospital Bed Management & Patient Flow Conference, Australia's foremost patient flow improvement meeting, showcasing innovative case studies and pioneering best practice in the nation’s hospitals.

Over 150 hospitals and state and federal departments of health throughout Australia and New Zealand have attended this conference over the past years. For more information about the annual event, please visit the conference website: http://www.healthcareconferences.com.au/bedmanagement14

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Lynne McKinlay, Royal Children’s Hospital Brisbane: Connected Care - A New System of Care for Children with Complex Health Care Needs and their Families

  1. 1. Connected Care Care Coordination for Children with Complex Healthcare Needs Presented by: Lynne McKinlay Date: February 2014
  2. 2. Marine Pilot » “A pilot is a mariner who guides ships through dangerous or congested waters, such as harbours or river mouths. » Pilots are expert shiphandlers who possess detailed knowledge of local waterways … » (however) the master has full responsibility for safe navigation of his vessel, even if a pilot is on board.” To ensure a ship arrives in port safely, it needs: Captain (parent) Pilot (Care Coordinator) Lighthouse (Hub)
  3. 3. A&E presentations: Psychosocial factors: Sole parent family; primary carer with comorbid medical and mental health needs; unmet financial needs; unemployment; additional carer requirements (elderly grandparents). 23 in past 12 months (18/23 resulted in admissions) + 26 OPD appointments Medical Conditions: Jane 12yo Community Services: Xavier Respite services; Logan Central Special School; Disability Services; Bayside Respite Microcephaly; PICA Syndrome; global developmental impairment; epilepsy; gastrooesophageal reflux; hypertonia; dysphagia, dystonia; colectomy with ileostomy; gastrostomy button; sleep disorder No Diagnosis Carbamazepine Medications: Topirimate; clonidine; ferrous sulphate; chloral hydrate; omeprazole;midazolam . Current Care Requirements: Vigilant supervision; seizure management; incontinence and digestive elimination management; oral and enteral nutrition; mobility support and supervision; basic comprehension and limited expressive communication; full hygiene assistance Current health care team: General paed @ MCH; general paed @ Logan hospital; paediatric neurologist; surgeon; GP; Complex care service; patient representative; social work MHS.
  4. 4. Children with Medical Complexity 1. 2. 3. 4. chronic, severe health conditions substantial health service needs major functional limitations high health resource utilization › CMC likely represent less than 1% of all children › account for over one-third of pediatric health care costs › inpatient care is responsible for as much as 80% of health care cost for CMC › use of the hospital is increasing for CMC over time » 0.4%- 0.7% all children based on literature (estimate a total of 3500-6000 children in Queensland)
  5. 5. Benefits of Care Coordination » Palfrey, 2004 – primary care model commencing in 1998 1) the services of a designated pediatric nurse practitioner (PNP) 2) consultation from a local parent of a child with special health care needs 3) modifications of office routines 4) implementation of an individualized health plan (IHP) 5) Regularly scheduled continuing medical and nursing education 6) expedited referrals and communication with specialists and hospital-based personnel.
  6. 6. Benefits of Care Coordination » Palfrey, 2004 – Findings » “an individualised health plan has been shown to improve communication between health care providers, family goal setting and improved family experience when they needed to attend the emergency department” » The children in these practices were hospitalized fewer times and their parents missed fewer days of work » Importance of family buy-in – involved in design of program and reference committee » Importance of physician leadership and engagement: leadership from physicians “committed to the idea that CSHCN could be cared for in the community, and … made a conscious decision that they wanted to improve their practices to accommodate children with complex problems”
  7. 7. Benefits of Care Coordination » Rosenbaum et al, 2008 – Complex Care Coordination Expert Panel » some evidence of significant medical, social and financial benefits through care coordination for medically fragile and/or technology dependent children and youth including: › Reductions in life-threatening illnesses, intensive care unit admissions and intensive care days › Decreases in payments to hospitals and specialist physicians and improvements in accessibility of care, parental perceptions of communication and overall satisfaction › Decreases in parental work loss and hospitalizations › Improvements in quality of life. › These evaluations measured only the short-term impacts of the care coordination models.
  8. 8. Proposed Complex Care Coordination Model » (Rosenbaum et al, 2008 – Expert Panel) » 4 goals: 1. Improve the quality of life of children and youth with complex medical or mental health conditions and their families. 2. Improve the health status of children and youth with complex medical conditions, wherever possible. 3. Maximize time out of hospital and decrease avoidable hospitalizations, days in hospital, inefficient, unnecessary or avoidable ambulatory clinic visits, and emergency department visits. 4. Coordinate the needs of the child or youth and their family with home, community and hospital services, including the transition to adult services.
  9. 9. Proposed Complex Care Coordination Model » (Rosenbaum et al, 2008 – Expert Panel) » 4 key strategies: 1. A Key Worker role should be developed - single contact point for care coordination. How the care coordination responsibilities are shared between the Key Worker and the family would be determined through negotiation between the family and the Key Worker. 2. For every child enrolled in the service, a most responsible physician (MRP) should be identified, depending on the child and family’s special needs, circumstances and parental choice. This information should be documented in the child’s care plan and updated regularly. 3. The service should be available for support to families and clinicians (e.g., emergency room physicians) during regular office hours. Extended access (e.g., 24 hours a day, seven days a week) should be offered only as required. 4. The model should be based on shared care between the local health care team (e.g., the primary care practitioner and other care providers in the child’s community) and the secondary and tertiary centres that provide specialized care and services to the child and family.
  10. 10. Ideal Model of Care for CMC » 1. 2. 3. 4. » (Berry et al, 2013) “Best practices not yet identified, but the ideal model of care for CMC is suspected to be” one that: provides urgent care in the outpatient setting to treat acute health problems contains at least one outpatient provider who comprehensively addresses acute and chronic medical, functional and psychosocial needs coordinates decision making among all participating health care providers develops effective, proactive plans of care to maximize the child’s well-being and proactively anticipates health problems that are likely to occur.
  11. 11. Benefits of Care Coordination » “The potential value from coordinating care for CMC (children with medical complexity) goes first to the patient and family … with improved health and well-being” - Berry 2013. » » » » » reduce length of stay prevent hospitalisation reduce prolonged parental absences from work improve quality of life for children and their families makes caring for children with medical complexity easier, for the family and the clinician
  12. 12. Critical Components » Coordinated Care – care planning decisions are communicated and actively discussed with the family and members of the child’s care team within the context of all the child’s health problems and issues. » Comprehensive Care – at least one health care provider approaches the child in a holistic way through the systematic assessment of the child’s multiple health problems and through understanding their medical and other needs in the context of the child’s overall health and well-being. » Accessible Care - likely to have acute medical problems that, if not addressed in a timely manner, may lead to a rapid decline in their health. Access to urgent outpatient advice or management to address health care needs, either in person or over the phone, may avoid emergency department visits, hospitalisations, and readmissions.
  13. 13. Connected Care Purpose » To measurably improve the outcomes for children with chronic and complex health care needs » through coordination of care, a child-centred approach, partnership with families and caregivers, family empowerment, and creation of cross speciality expertise and teamwork across the state of Queensland.
  14. 14. Eligibility Criteria Rosenbaum et al, 2008
  15. 15. Eligibility Criteria
  16. 16. Principles » » » » » Family centred care › Family is the primary source of experience for a child › Families have the capacity to strengthen their capability to support their child › Work together to determine meaningful solutions to complex problems Shared Care Strengths- based approach – avoid dependency Avoid duplication Value add to system
  17. 17. Queensland » Second largest state or territory in land mass » Third largest population » Third largest city » Largest regional city » Most geographically dispersed population » Only state or territory with 5 regional cities >100k people
  18. 18. Connected Care Program Identify a “Care Coordinator” for each child from within »Connected Care »Mater Complex Care team »or another existing professional with similar responsibility › CNC › cardiac care coordinator › cancer care regional case manager › private case manager › specialist AHP
  19. 19. Care Plan » » » » Summary Current Management Concerns and Goals Functional Assessment » » » Family Care Plan diary Emergency Care plan/s After Hours Action Plan
  20. 20. Connected Care Program Identify all specialists »regularly involved in the care of the child »a “Lead Specialist” › depends on health condition/s › region where family lives › will respect parental choice »The Lead Specialist must agree to take on this role.
  21. 21. Leading Lights Two lights are positioned near one another. One, called the front light, is lower than the one behind, which is called the rear light. At night when viewed from a ship, the two lights only become aligned vertically when a vessel is positioned on the correct bearing. If the vessel is on an incorrect course, the lights will not align.
  22. 22. Hub responsibilities Intake and database Resource Directories Coordination of multiple clinic appointments Training Psychosocial resources Network Management Support in absence of care coordinator Practical assistance
  23. 23. Outside of Hours Contact »Early identification of clinical risk and anticipation of needs »Standardised process with local application »“After Hours Action Plan” »Emergency Care Plans »Network support during absence of Care Coordinator
  24. 24. Program Evaluation »Partnership and participation in health care planning (adapted to use by families of dependent children) »Health literacy »Health service utilisation »Availability and completeness of care plans »Provider satisfaction »Formal research questions
  25. 25. Pilot Phase of Program Development »Identify small group of patients - statewide »Identify Lead Specialist and others in the Care Team »Contact Lead Specialist and other specialists on care team – provide information and clear expectations »Collect data from chart and populate intake form »Contact family and provide information about service »Development of › Care Plan › Emergency Care Plan/s › After Hours Action Plan › Sign off by Lead Specialist » Regular, planned contact »Feedback from families and clinicians
  26. 26. Allegory » Literary device » A story, poem, or picture which can be interpreted to reveal a hidden meaning, typically a moral or political one » » Allegory makes their stories and characters multidimensional they stand for something larger in meaning than what they literally stand for.
  27. 27. Pilot Participants » 29 Participants » Resident in 8 HHS: › Cairns and Hinterland › Cape York › Central Qld › CHQ › Darling Downs › Gold Coast › South West › Townsville 4 3 1 9 2 5 1 4 » Aged 4 mths to 15.5 yrs » 31% < 1 yr; 58% < 3 yrs; 10% > 10 yo
  28. 28. Pilot – patient and service characteristics » 9 children identify as ATSI (31%) » 3 children in care of DOCS – although only 1 of those is active (ie obtaining consent is difficult) » » » » 98 Medical Officers registered on the database over 17 speciality areas 20 general paediatricians Most common subspecialties: Neurology/Neurosurgery; ENT; Orthopaedics; Rehab; Gastro
  29. 29. Results – Family Satisfaction » » 4 point Likert scale – all responses in either most favourable or 2nd most favourable category N=13/ 29 participants » Q.1 Quality of service – 85% “excellent” » Q.2 Did you get the kind of service you wanted? 70% “yes definitely” » Q.3 Did service meet your needs? 69% “almost all” » Q.4 Recommend our program? 100% “yes, definitely” » Q5. How satisfied with amount of help? 69% “very satisfied” » Q.6 Have the services you received helped you deal more effectively with your problem? 62% “a great deal” » Q.7 Overall satisfaction? 92% “very satisfied” » Q.8 Would you come back to the program? 100% “yes, definitely”
  30. 30. Queensland Connected Care Program » Reference committee with family involvement » Articulated vision, philosophy and partnerships » Goal to move patients through the program and towards family enablement and independence » Medical engagement » Explicit medical and care coordinator roles » Use of allegory – memorable illustration of the vision » Wide consultation (ongoing) » Regionalisation of the model » Central intake » Psychosocial support model » Resource directory and central appointment coordination
  31. 31. Care Management Care Coordination Level of CCP Input Partnership Self Management Discharge Model of Care Options Sanders Model, Connected Care Program, Children’s Health Queensland, 2013
  32. 32. Key References » » » » Peter S, Chaney G et al. Care Coordination for Children with Complex Care Needs Significantly Reduces Hospital Utilization. Journal for Specialists in Pediatric Nursing 16: 2011; 305–312. Berry JG, Agrawal RK, Cohen E, Kuo DZ. The Landscape of Medical Care for Children with Medical Complexity. Children’s Hospital Association, Alexandria, VA, Overland Park, KS, June 2013. Available online at www.childrenshospitals.net/cmclitreview Rosenbaum P. Report of the Paediatric Complex Care Coordination Expert Panel, Canadian Government, Ministry of Health and Long Term Care, May 2008. Available online at http://coordinatedaccess.ca/en/wp-content/uploads/2010/05/Report-ofthe-Paediatric-Care-Coordination-Expert-Panel.pdf Palfrey JS, Sofis LA, Davidson EJ, Liu J, Freeman L, Ganz ML. The Pediatric Alliance for Coordinated Care: Evaluation of a Medical Home Model. Pediatrics 2004;113;1507. Available at http://www.pediatricsdigest.mobi/content/113/Supplement_4/1507.full. pdf+html
  33. 33. Acknowledgements » » » » » The children and families who participated in the pilot program Paul Sanders - Family Advisory Council Bethany Hooke and Perrin Moss, project officers Jaclyn Harber, Nurse Unit Manager Care coordination team connect-care4kids@health.qld.gov.au

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