Connected Care

Presented by: Lynne McKinlay

Date: February 2014

Care Coordination for

Children with Complex

Healthcare Needs

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)

Psychosocial factors: Sole parent family; primary carer with comorbid medical

and mental health needs; unmet financial needs;

unemployment; additional carer requirements (elderly

grandparents).

Medical Conditions: Microcephaly; PICA Syndrome; global

developmental impairment; epilepsy; gastro-

oesophageal 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

A&E presentations: 23 in past 12 months

(18/23 resulted in

admissions) + 26

OPD appointments

Current health care team: General paed @ MCH; general paed @ Logan hospital; paediatric neurologist;

surgeon; GP; Complex care service; patient representative; social work MHS.

Community Services:

Xavier Respite

services; Logan

Central Special

School; Disability

Services; Bayside

Respite

Jane 12yo

Children with Medical Complexity

1. chronic, severe health conditions

2. substantial health service needs

3. major functional limitations

4. 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)

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.

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”

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.

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.

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.

Ideal Model of Care for CMC

» (Berry et al, 2013)

» “Best practices not yet identified, but the ideal model of care for

CMC is suspected to be” one that:

1. provides urgent care in the outpatient setting to treat acute

health problems

2. contains at least one outpatient provider who comprehensively

addresses acute and chronic medical, functional and

psychosocial needs

3. coordinates decision making among all participating health care

providers

4. develops effective, proactive plans of care to maximize the

child’s well-being and proactively anticipates health problems

that are likely to occur.

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

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.

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.

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 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

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

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

Care Plan

» Summary

» Current Management

» Concerns and Goals

» Functional Assessment

» Family Care Plan diary

» Emergency Care plan/s

» After Hours Action Plan

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.

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.

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

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

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

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

Allegory

» Allegory makes their

stories and characters

multidimensional

» they stand for something

larger in meaning than

what they literally stand

for.

» Literary device

» A story, poem, or picture which can be interpreted to reveal a hidden

meaning, typically a moral or political one

Pilot Participants

» 29 Participants

» Resident in 8 HHS:

› Cairns and Hinterland 4

› Cape York 3

› Central Qld 1

› CHQ 9

› Darling Downs 2

› Gold Coast 5

› South West 1

› Townsville 4

» Aged 4 mths to 15.5 yrs

» 31% < 1 yr; 58% < 3 yrs; 10% > 10 yo

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

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”

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

Care

Management

Care

Coordination

Partnership

Self

Management

Discharge

Lev

el of C

CP

Input

Model of Care

Options

Sanders Model, Connected Care Program, Children’s Health Queensland, 2013

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-of-

the-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

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