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Pediatric Challenges in Case Management: Decades of Change Gwen Fosse RN BSN MSA Clinical Outreach Specialist University of Michigan Congenital Heart Center CS Mott Children’s Hospital [email protected]

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Page 1: Pediatric Challenges in Case Management: Decades of …nursing.msu.edu/Images_Docs/CE_Images/CasePresent… ·  · 2014-08-12Pediatric Challenges in Case Management: ... • Premature

Pediatric Challenges in Case Management: Decades of Change Gwen Fosse RN BSN MSA

Clinical Outreach Specialist

University of Michigan Congenital Heart Center CS Mott Children’s Hospital

[email protected]

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Disclosures

• No conflicts of interest to disclose

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Objectives

• The participant will be able to: –Describe advances in care of children that have

evolved to the current characteristics of pediatric case management.

–Discuss three examples of adventures and realities of pediatric case management.

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Background – Decades of Change

http://students.usm.maine.edu/michelle.panek/mmodewith%20labels.bmp

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Nature of Pediatric Illnesses

–Many variables contribute to illness • Age (Infants more prone to respiratory

difficulties,etc.) • Season (RSV, trauma, meningitis,etc.) • Time of Day (fevers more prevalent in the evening

hours) –5% of children presenting to hospitals have life-

threatening conditions • Rapid onset • Frequently involves the respiratory or central

nervous system

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Pediatric Care in the USA

• Most pediatric admissions in acute care hospitals are infectious diseases – These admissions are being reduced by new immunizations

• More than 40% of the pediatric population is on Medicaid with reimbursement at about 60% - creates administrative challenges

• Most acute care hospitals accept pediatric patients – children are <5% of their total patient population and this

percentage is decreasing

• Reimbursement issues and the low numbers of patients in community hospitals results in challenges to the staff of acute care hospitals to provide quality care. Partnering offers ways to work together.

• SG2; Skokie, IL. 2003.

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Pediatric Population

Infants and children make up a very small minority of hospitalized patients in the USA. –Their needs are different – they are not just small adults –Their diseases and responses are different –Most children grow up without ever needing a hospital but when children need a hospital, they present the staff with great challenges

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Survivors of Pediatric Conditions - A population with needs

• Children are surviving conditions that previously were associated with greater childhood death

– Cancer, trauma • Premature birth, complicated birth, prenatal

exposures • Bronchopulmonary dysplasia/ chronic lung disease,

developmental concerns • Birth defects

• Craniofacial, genitourinary, nephrology, musculoskeletal, gastrointestinal, etc.

• Cardiac conditions • Neurological - Spina bifida (decreased incidence)

• Technology improves life expectancy • Now have populations of chronically technology

dependent - Oxygen/Vents,TPN

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Pediatric inpatient care

• 1991-2005 inpatient pediatric admissions –Single diagnosis – rate increased by 20% –Multiple diagnoses – rate more than doubled

Burns KH et al. Peds 2010; 126: 638-646

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Children are Special So Are Their Health Care Needs

Presenter
Presentation Notes
Bianca – PDA/AP window
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What is our perception of illness? Society’s perception of childhood illness

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Pediatric population in hospitals is changing

• In children’s hospitals many of the patients are those with chronic childhood conditions.

• Emergency Department - It is changing in volume and character – ED’s are the primary source of care: 1 in 4 American

children live in poverty with no medical insurance coverage.

– There is a greater referral rate by primary care physicians to the hospital ED’s d/t the 24 hour availability and their reluctance to handle complex cases

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Legislative and economic implications

• Federal • State • Affordable care act • Healthcare policy and economic climate

impacts inpatient and home healthcare of children

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What do children want from health care?

Presenter
Presentation Notes
What do you children want from health care? This video provides a good example (or whatever Gwen wants to customize). The photo here describes how all of us are responsible for children’s health care
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• Requires collaboration between community hospitals and children’s hospitals

Healthcare of Children

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Children’s Hospitals Resources for Providing Care for Children

• Concentration of pediatric subspecialty services (equipment and PEOPLE)

• Tertiary • Quarternary

52-54 free standing children’s hospitals across the USA – over 100 within larger institutions

• 55% (and growing) of admissions are due to chronic conditions

• Episodic care instead of single acute interventions

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Providing care for children • Care of children requires a very special

team and place Physicians–residents, attendees Mid-levels–nurse practitioners, physician assistants Nurses Therapists–respiratory, occupational, physical,

speech, etc Pharmacists, dieticians, teachers Child life therapists–special visitors: teams, celebrities

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Case management - Definition • A managed care technique within the healthcare coverage

system of the US. Medical case management – general term referring to facilitation of treatment plans to assure appropriate medical care. www.wikipedia.org – accessed 9/15/12

• “a collaborative process of assessment, planning, facilitation, care coordination, evaluation, and advocacy for options and services to meet an individual’s and family’s comprehensive health needs through communication and available resources to promote quality cost-effective outcomes.” Case Management Society of America www.cmsa.org

• “a collaborative practice model including patients, nurses, social workers, physicians, other practitioners, caregivers and the community… ..encompasses communication and facilitates care across a continuum through effective resource coordination.” Am Case Management Assoc www.acmaweb.org

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Case management - Definition

• Embellished, liberal definitions – – Team case management

• Always really the case – Chronic care case management – Episode of care case management

• Inpatient and outpatient aspects

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Care Coordination/Case Management

• Targeting at-risk people for focused –assessment of medical, functional, social, and

emotional needs –provision of optimal treatment, health

education, & integrated services –monitoring of progress & early signs of

problems

Chen A et al. 2000. Best practices in coordinated care. Princeton, NJ: Mathematica Policy Research

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Case Management/Care Coordination Outcomes • Reductions in hospitalizations

– Decreased lengths of stay

• Optimizing management of complex cases in and out of the hospital

• Decreased ER visits • Reduced costs • Fewer hospital-reported errors Peter S et al. J for Spec in Ped Nsg 2011; 16:305-312 Battersby M et al. Austr J of Primary Health 2003; 9: 41-52

Battersby M & SA HealthPlus Team. BMJ 2005;330:662-665 Berman S et al. Peds 2005; 115: 2004-2084 Gordon J et al. Arch of Dis in Childhood 2007; 93: 2-4. Cady R et al. J of Telemedicine & Telecare 2009; 15: 317-320

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Do kids need case management?

• Disparities in access to health care exist • How are children affected?

–Lower likelihood of having usual source of care –Providers have inadequate time –Communication challenges when patient isn’t

responsible for self –Less access to appropriate management of

chronic conditions Raphael JL et al. Acad Pediatr 2009; 9: 221-227 Flores G et al. J Asthma 2009; 46: 392-398

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Historical Perspective • Case management in 1986

– Nursing case management for home-based care of chronically ill children in a rural area • Designed health care plans- coordination of care • Assured care plan implementation • Provide a community-based link between child/family

and the physician/tertiary care center – Barriers/challenges

• Isolation • Chronicity • Lack of transportation • Scarcity of providers/resources

Schwab S, Pierce P. Pub Health Nursing 1986; 3: 111-119.

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Management strategies

Adventures and realities of pediatric case management

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Prevention Opportunities with Pediatrics

• Prevention strategies – every encounter is an opportunity to address prevention issues – safekids.org

–Tobacco –Drugs –Immunizations –Car safety –Fall prevention –Environmental Health

»Size, low to ground, play • Advocacy

–Schools, health care access, community

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Pediatric Safety Issues – Implications for Case Management • Children are among the most vulnerable patients • Example: Medications

– Errors occur in 39.1/100 orders for adults and children (Potts, Peds 2004)

• Med error 3 times more likely in children – With children the risk for error is large –

• 11.1% rate of adverse drug events in pediatrics. (The Joint Commission, Sentinel Event Alert, Issue 39, 4/11/08)

–Due to variations in doses – weight-based dosing –Fractional dosing –Drugs packaged for adults –Most healthcare settings are based on adult care

• Children have narrower therapeutic margins –less tolerance for errors

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Safety

Children are vulnerable Equipment, medications and other interventions are often designed with adults in mind but adapted for children •Size •Behavior/curiosity

–With children the risk for error is large –Look around what do you see? –What would a child’s view be? –Are things safe?

Presenter
Presentation Notes
We all have a responsibility for the safety of the environment
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Management strategies - Beyond prevention & safety, the real goal…..

• “Normalizing” life –Make the environment and process of care as

close to normal life as possible –Being at home sure helps but ….. –Attempt to have child in school/daycare –

normal environment as much as possible • Risk of exposure to communicable diseases

–Routine childhood illnesses present a unique challenge for kids who need case management

• Improves quality of life Peterson-Carmichael S, Cheifetz I. Resp Care 2012; 57: 993-1003

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Family-centered care- Institute for Patient- & Family-Centered Care

Strategies for Leadership

The American Hospital Association partnered with the Institute to produce the Strategies for Leadership: Patient- and Family-Centered Care toolkit. This resource was distributed to the CEO of every U.S. hospital in the fall of 2004. It contains a video and companion discussion guide, a resource guide and a self-assessment tool for hospitals. The entire toolkit can be downloaded from the AHA website.

Patient- and Family-Centered Care: A Hospital Self-Assessment Inventory Strategies for Leadership: Patient- and Family-Centered Care

www.ipfcc.org

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Family-centered care IPFCC Tools/Checklists Tools to Foster the Collaboration with Patient and Family Advisors – tools for healthcare professionals and families

Applying Patient and Family-Centered Concepts to Bedside Rounds in Newborn Intensive CareApplying Patient and Family-Centered Concepts to Bedside Pediatric Rounds

Other Tools to Foster the Practice of Patient- and Family-Centered Care

Tools to Assist in Designing Supportive Health Care Environments

www.ipfcc.org/tools

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Patient & Family Centered Care Program Patient Family Advisory Council The Patient and Family Advisory Council is largely a family council with staff representation. The Council provides leadership for all subordinate Mott Patient and Family-Centered Care Organization (PFCC) committees and reports to the PFCC Executive Committee. The Council shares their views, experiences, and ideas with senior clinicians and administration during their monthly meetings and through their regular reporting to the Executive Committee. This structure has been designed to provide a primary voice and leading role for patients and families. At the same time the organization ensures active participation and leadership by senior clinicians and administrators and the active involvement of staff and student members dedicated to the principles and philosophy of patient and family-centered care. The overall mission is to help Mott Children's and Women's Hospital deliver patient and family-centered care through collaborative efforts. These efforts will enhance the University of Michigan Health System's vision of attaining the Ideal Patient Experience.

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Parent – family perceptions of care

• Performed by Julie Newland, mom

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Communication & relationships • Hand offs

–Fully provide directions; request clarification • “I didn’t pee!” • “Plain old doughnuts”

–Send the right message • Screwfest express • AED – abbreviations can confuse everyone

• Intimidation –When an adult scolds, child may feel like hiding

• Nurse/nurse, doctor/nurse, colleague/colleague –Reduced performance, decreased confidence

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Communication & relationships

• Adoration to defiance –Young and idealistic - respect experience when

shared well –changes to defiance if respect is lost –Inexperienced and experienced must work on

this

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For Best Pediatric Case Management – Each member of the team must know • How to approach children

–Smile, be calm, on their level, appreciate their play

• Developmental levels • How to communicate with children

–Positive, fun – if ‘mood of room’ allows –Concrete terms –Appropriate choices –With honesty –Remember body language messages

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Communicating with children as patients Generic conversation starters

– Pets – Siblings – Family – School – Seasonal

Cautions – Be aware of body language – Be aware of tone – Don’t talk about food – Don’t talk about medical stuff unless necessary

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Communication Strategies – Special needs children…….. • Children with multiple handicaps

–Avoid labeling • Down syndrome

–Use sensitive words such as developmentally delayed instead of retarded

–Avoid words like “normal”

Presenter
Presentation Notes
A child is not defined by their handicap or disease.
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Communication – Breaking bad news

• Based on information from hundreds of parents of children with heart disease – factors in receiving the diagnosis or new –Setting and emotions – –Demeanor –Timeframes –Accessibility of professionals –Control –Repetition Kamm DH. Cong Card Today 2005; 3: 12-16 www.caheartconnection.org

Presenter
Presentation Notes
Setting - privacy, timing acknowledging the difficulty of receiving the news acknowldges the emotion Demeanor – may not remember what was said but remembers how it was said Timeframes – give them a sense of when follow up will be – next step Accessibility – who can they call or email – written info helps Control – allow parents to say how much to discuss at a time or when to decide steps to pursue Repetition – retention of info can be as little as 20% - encourage questions
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Case Management Strategies – Care Coordination Programs for Children • Features that contribute to program success

– Based on 5 coordination programs that serve children and families: First 5 Initiative (IA), Pediatric Practice Enhancement Project (RI), Colorado Children’s Healthcare Access Program (CO), Assuring Better Child Health & Development (NC), and Help Me Grow (CT)

• Maximizing efficiencies through shared resources • Engaging pediatric practices • Providing training and tools • Leveraging existing systems and creating partnerships • Making funding and sustainability a priority • Incorporating flexible program design • Assessing service gaps and evaluating effectiveness • Taking a holistic approach to care coordination Silow-Carroll S & Hagelow G. CareManagement 2011; 17: 7-13

Presenter
Presentation Notes
Maximizing efficiencies through shared resources – community based or statewide entity that provides centralized services Engaging pediatric practices- need to engage not only physicians but mangers and nurses, etc - education Providing training and tools – parent peer mentors, nurse or SWs as coordinators must have good training and tools to document and track and to identify resources Leveraging existing systems and creating partnerships – build on infrastructure of existing program and partner with state and commuinty agencies Making funding and sustainability a priority – sources of private and public funding combined is beneficial at least until embedded in comprehenisve, integrated statewide systems of care Incorporating flexible program design – need to be able to have flexilitbity since communities vary in types of service gaps, geography, demographics, etc. Assessing service gaps and evaluating effectiveness- can’t address service gaps unless you know they exist – parental depression service gap, dental, whatever – need to know them to advocate and impact policy makers, etc Taking a holistic approach to care coordination – not just a medical model but education, nutrition, houising, etc.
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Management Strategies – Medical Home Partnership • American Academy of Pediatrics definition

– Model of delivering primary medical care that is accessible, continuous, comprehensive, family-centered, coordinated, compassionate, and culturally effective. (AAP 2002) • Partnership is perfect with case management

• Medical home benefits can include – Ability to advocate – Care coordination in disease management – Coordinate preventive services – Interdisciplinary collaboration – enhanced skills – Improved quality and reduced costs Grant R, Greene D. Am J of Pub Health 2012; 102: 1096-1103

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Management Strategies – Community Asthma Initiative

• 283 patients from low-income families in urban setting offered enhanced asthma care with nurse case management and home visits

• Results – Decreased ED visits by 68% and hospitalizations by

42.6% – Reduced school absence by 41% and parent work

absence by 49.7% – Days with activity limitations declined by 42.6% – Hospital costs reduced compared to data from

comparison community Woods ER et al. Peds 2012; 129 :465-472.

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Asthma case management

• 139 children/100,000 population in Michigan in 2008 had potentially preventable hospitalization

• National Asthma Education and Prevention Program (NAEPP) strategies reduces hospitalization, ER visits, urgent office visits, and missed school.

• Management strategies – Patient – focus on self-management to avoid triggers,

anticipation of problems, and medication compliance – Providers – focus on accurate diagnosis, appropriate

medication prescribing, patient monitoring, and patient education

Agency for Healthcare Research & Quality, USDHHS – www.hhs.gov accessed 7/18/12.

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Case Management – Ambulatory Care • Ambulatory Care Coordination Program (Australia)

– Team of experienced tertiary nurses led interventions • 24/7 phone support, personalized integrated care plans

(emergency and/or symptom plans), familiarity with pt conditions, enhanced communication between specialists and community professionals, & proactivity in DC planning when hospitalization occurred

• Results - phone contacts supported home management, decreased unnecessary hospital/ED visits, continuum inpatient and outpatient services

• Interventions most valued by parents – 24/7 phone access and nurses’ familiarity with child’s condition

Peter S et al. J for Spec in Ped Nsg 2011; 16:305-312

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Case Manager – Decision Making

• Balancing act – –Must strategize and work with clients to

balance and weigh influencing factors and constraints to achieve home care for children with complex needs.

–Interplay for decisions involves relational ethics • Ethical practice situated in a relationship

–Based on knowledge and collective experience Fraser KD et al. Care management Journals 2010; 11: 151-156

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Impacts of Case Management Strategies in Other Specific Areas

• Neonatal mortality due to sepsis and pneumonia – decrease by case management with timely antibiotics for this global problem – Zaidi A et al. Neo Int Care 2011;24:55-58.

• Prenatal Care Coordination for mothers on Medicaid led to fewer NICU admissions, low-birth-weight infants and preterm babies. Van Dijk JAW et al. JOGNN 2011;40:98-108

• Coordinating case management that includes periodic developmental surveillance throughout childhood in children with congenital heart disease can enhance allow intervention and enhance later academic, behavioral, and psychosocial functioning. Marino BS et al. Circulation 2012;126:00-00.

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Management strategies • Discharge planning

–Start as early as possible –Multidisciplinary process –Determine destination – facility or home –Assess psychosocial readiness – pt and family –Availability of resources

• Therapists • Education – school

–Home environment – water, power, safety –2 care providers – consider “care contract”

• Training – care, equipment

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Discharge Planning • AAP recommends a systematic approach of family-

centered, coordinated care with advanced planning for best outcomes for kids, families and providers. – This is especially true for patients with complex issues – To accomplish this, must have DC planning when

pediatric hospitalization occurs

• AAP guidelines for discharge to home for kids with complex needs include: – Predischarge planning – Maintaining optimal home care – Medical Home – Making the transition from hospital to home – Maintaining home care Pediatrics 2012

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Palliative care • With increased care of complex pediatric

patients at home – increased need for the role of palliative care – Odds of a complex pediatric patient dying at

home increased significantly from 1989 to 2003 Feudtner C et al. JAMA 2007; 297:2725-2732

• Early introduction of concept of palliative care –Goals of consultation

• Symptom management • Facilitating communication • Decision making • Coordination of care

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Advance Care Planning in Pediatrics

D’Anna Saul, MD, FAAP University of Michigan Department of Pediatrics Grand Rounds August 21, 2012

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Decision Making at End of Life in Pediatrics

• Advance Care Planning/Advance Care Directives –Case management with colleagues experienced

in palliative care • Decision-making at the end of life can be

more complicated for children and adolescents than for adults because of issues with competency and capacity.

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Why is ACP important?

Data from 3 pediatric palliative care programs 2000-2006. Siden H et al. Pall Med 2008; 22: 831-834

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Adult vs. Pediatric ACP

• Much more attention to ACP for adults than children

• Available information cannot always be extrapolated to children: –Parents, not children, have legal authority to make

decisions –Children’s preferences might only be honored if

parents agree

• Families can focus on life‐sustaining therapies longer, postponing EOL plans

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Death of a child – case management • Childhood death is particularly traumatic • Case management team should have a plan for

addressing pediatric death – Recognize the profound effect on parents and staff – Expertise can make a difference –Multidisciplinary education using simulation

• Utilize appropriate scenario(s) • Provides practice for complex communication in a

realistic environment • Debriefing allows discovery of best communication

and support Youngblood AQ et al. Crit Care Ns 2012; 32: 55-61

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Barriers and challenges

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Barriers/Challenges • Behavioral disorders/Austism spectrum –

unmet needs in medical homes – Parent concerns

• Delayed recognition of behavioral and developmental disorders

• Less comprehensive, coordinated and family- centered care and inadequate advocacy for services

• Caregiver stress – Challenges for providers

• Time • Patience required • Resources Carbone PS et al. J Autism Dev Disord 2010; 40: 317-324

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Chronically critically ill children/ chronically medically supported • Technology dependence; medically fragile

• Increased risk for physical, developmental, behavioral, and/or emotional conditions

• Elevated need for healthcare services – PT, OT, SLP…. – coordination challenges

• Care setting for this population • Adults – ICU to long term acute care (LTAC) or skilled

nursing facility

• Peds - acute care to home

Peterson-Carmichael S, Cheifetz I. Resp Care 2012; 57: 993-1003

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Barriers - Complex patients

• Increase in number and acuity of kids at home with life-limiting, life-threatening, and chronic long-term health conditions. Rempel G & Harrison M. Qual Health Res 2007; 17: 824-837.

• Lack of experience of primary care providers with this population

• Emergency preparedness • Knowledge gaps of home health care personnel

– Home ventilators in particular

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Home Healthcare for Complex Pediatrics

• Issue – maintaining adequacy and competency of qualified home healthcare nursing

• Home care nurses must have resources – –Nursing education – basic and continuing –Access to acute care practitioners in the tertiary

care center Cervasio K. Home Health Nurse 2010; 28: 424-431.

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Home Healthcare for Complex Pediatrics

• Initial short term goals for initiation of home care – Safety – Medication administration – Psychosocial support – Prevention of infection – Prevention of complications – Comfort/Promotion of bonding Cervasio K. Home Health Nurse 2010; 28: 424-431.

Presenter
Presentation Notes
Safety – usual (sleep, injury prevention, never leaving unattended, etc.) then safety related to condition and equipment Meds – through g-tubes, language/reading issues (may need to draw pictures, get translation, etc) Psychosocial - education, coordinating team for goals, respite, care portfolio, recognizing the stressors for the caregivers and assess their resilience Prev of inf – cleanliness, assessing for infection, who to notify Prev of complications – based on diagnosis and equipment Comfort/Bonding – age appropriate activity and stimulation, comfort measures for condition
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Home Healthcare for Complex Pediatrics

• When home care plan has been established and short term goals met the care for a child with special needs must transition with continuity of care – Identifying long term care

• Early Intervention Programs • Programs through Medicaid or waiver programs • Services – nursing, therapy, counseling

– Joint visit from acute home care nurse to longer term program staff to transition

Cervasio K. Home Health Nurse 2010; 28: 424-431.

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Ventilator dependent children- Economic trends

• Increased frequency of inpatient care • 2000-2006

–Discharges for vent dependent children increased by 55%

–Total charges for admissions – increased by 70%

–Nearly doubling of number supported by public financing

–Population served by private insurance only increased by 12%

Benneyworth BD et al. Ped 2011; 127: e1533-e1541

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Ventilator dependent children- Care issues for case management

• Tracheostomy care

• Ventilator management

• Monitoring

• Neuromuscular weakness

• Airway clearance – vulnerability related to smaller airway and smaller trach tubes

• Feeding issues

Benneyworth BD et al. Ped 2011; 127: e1533-e1541

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Ventilator dependent children- Care issues for case management • Withdrawal of life-supporting treatment -

management requires – Interdisciplinary team must assure that they agree

about information to present to patient and family – Team should gather information about the family’s

coping abilities – Conferences with patient and parents

• Decision about whether patient will participate • All must understand the process

– Emotional support – Clear communication – Organized approach to achieve a peaceful death Stacy KM. Crit Care Ns 2012; 32: 14-23

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Complex child care - benefits

• Survey of parents of 79 children with Trisomy 13 or 18 who elected “full” treatment for their children and were in support groups

• 50% reported care for disabled child was more difficult than anticipated

–97% described their child as happy –Reported that the experience enriched their

family

Javier A et al. Peds 2012; 130:293-298

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Challenge – Assessing Quality of Life • Successful case management must consider quality

of life in children – allows team to go from helping them survive to helping them thrive – With ability to aggressively manage complex conditions

there are ongoing quality of life issues – family, self-management, school, peers, activities….

– Strategies that may be appropriate for assessing some pediatric populations • Routine screening of QOL for cardiac children (Uzark K

et al. Peds 2008; 121:1060e-1067e)

• Use of standardized psychosocial status testing • Simple questions – what makes days good/easy or

bad/hard (Green et al. 2007; Green et al. 2011) Green A. J Ped Nsg 2012; 27: 193

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Other barriers

• Court-referred clients – collaboration orchestrated by a single case coordinator across service providers was effective in improving child well-being and decreasing family danger and conflict. Coll KM et al. Child Welfare 2010:89:61-79.

• Lack of some services challenges case management – Pediatric long term care, rehabilitation, and inpatient pediatric psychiatric facilities lacking and reimbursement of this care may be poor. Hosp Case Management 2010

• Immigration status with lack of coverage may result in inability to find appropriate home care. Hosp Case Management 2010

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Barriers/Challenges

• Insurance dictating location of care regardless of outcome data

• Parental custody • Foster care • Transportation • Reimbursement

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Transitioning care • Transition from pediatric to adult

healthcare –Allows patient more independence –Categories to address for successful transition

• Focused education • Skills training • Staffing

–Transition coordinators –Combined/transition clinics –Targeted services –

»Young adult clinics »Telephone services

Peterson-Carmichael S, Cheifetz I. Resp Care 2012; 57: 993-1003

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Transitioning care

• Transition from pediatric to adult healthcare –Adult physicians may not be familiar with

“childhood illnesses” and there can be adverse outcomes as a result during transition • Delayed recognition of needs • Unfamiliar with specialized follow-up surveillance

and management needs

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Transition of care team – complex adult congenital heart disease (CHD) • Adults who had complex pediatric heart surgery may

have unique sets of issues – Hemodyamic, electrophysiologic, multisystem

dysfunction, and others

• Establishing a team to address CHD care plus address the medical/social needs of adulthood is necessary – nurses as coordinators – Cardiology, CV surgery, EP, internal medicine,

psychiatry, social work, chaplain service, etc.

• PNPs experienced in CHD may be uniquely qualified to coordinate care for this population to improve outcomes and quality of life.

Dechert BE, Deal BJ. J of Ped Health Care 2008; 22: 246-253

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Lessons learned

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Summary

• Effective pediatric case management –Assists families in navigating complex services –Creates a feedback loop with all practitioners –Promotes earlier identification of developmental

delays and complications –Helps families who are risk for falling through the

cracks Silow-Carroll S & Hagelow G. CareManagement 2011; 17: 7-13

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Summary

• Remember –Children are NOT miniature adults! –Chronological age does NOT always =

developmental age/stage –Caring for a child means that the family is your

patient – You can make your interactions impact a child’s

life in a positive fashion – WHAT A NEAT OPPORTUNITY!!!

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