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Routine Preventive Care for

Children with Medical

Complexity

Dr. Tammie Dewan, MD, FRCPC

Dr. Esther Lee, MD, FRCPC

Dr. Nathalie Major, MD, FRCPC

Disclosure Information

AACPDM 70th Annual Meeting | September 20-24, 2016

Speaker Name: Dr. Tammie Dewan, Dr. Esther Lee, Dr. Nathalie Major

Disclosure of Relevant Financial Relationships

I have no financial relationships to disclose.

Disclosure of Off-Label and/or investigative uses:

I will not discuss off label use and/or investigational use in my presentation

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Acknowledgements

• Canadian Pediatric Society Complex Care

Special Interest Group (CPS Complex Care SiG)

– Health Supervision Framework working group

Outline

• Context– Children with medical complexity

– Preventive care

– Challenges

• Approach to Routine Preventive Care for CMC1. Goal setting

2. Health supervision

• Conclusion– Take home points

– Questions for discussion

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Two Components

1. Family Goal Setting

– Short term

– Long term

– Acute/Resuscitative

2. Health Supervision

– To facilitate appropriate preventive care and

comprehensive review

– Evidence-based and standardized

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Defining Goals of Care

• Process of discussing the priorities/aims/understanding of care plans

• Extension of usual discussions about the treatment plan:– Short and long term goals, and advance care directives

– Medical life sustaining treatment decision, advance care planning, advance directives, communicating prognosis in palliative care

– Should include more personal, and focus on where they(the child/family) want to be, and how they want to live their lives.

• Allows clinicians to align the care provided with what is most important to the patient and his or her family.

A Child with Medical Complexity, Fragility

• Prematurity 24+5wks, CP GMFCS 5, mixed spasticity and dystonia

• Visually (severe ROP)& Hearing impaired-left sided cochlear implant

• BPD- recurrent aspiration pneumonia

• GERD, dysphagia (aspirate with liquid)

• OSA, Bipap, T&A

• PDA, Indomethacin-ARF, ligation

• Stage 3 VUR –STING procedure

• Meconium plug and microcolon/perforation & resection small bowel (17cm)

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Process of Establishing Goals of Care

• WHO? Child/Family, Primary care provider, Specialty care provider,

“provider”

• WHY? Good communication is a cornerstone of high-quality medical care

• WHEN? Longitudinal, every clinical encounters, pro-active vs acute care

• Treatment Decisions Principles? Rare disease, unique

circumstances

Approach to Discussing Goals of Care

• REMAP

– Reframe: current decision must be placed into the

context of the clinical scenario

– Expect emotions: naming and acknowledging

emotions helps clinicians to explore them further;

attend to affect, feelings of loss, fear, and guilt

– Map out the future: must have a clear understanding

of the goals prior discussing treatment options

– Align with Values: verify what was understood

– Plan treatments that match values

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Examples: FFTM, Care Plans and

Medical Roadmap

Full

Code

Medical Roadmap

FFTM

Care Plan

Example: Care Plan

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Example: FFTM

Example: Roadmap

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Long term and Acute/Resuscitative Goal Setting:

Family Team Meeting

• P - Physical

• E - Emotional

• S - Social

• S - Spiritual

• T – Trajectory

Long Term Trajectory

• T - Trajectory

http://ichef.bbci.co.uk/news/976/cpsprodpb/6D9C/production/_87106082_voldemort_ap_976.jpg

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The Mystery Child

• 9 year old boy with epileptic encephalopathy, central apnea, aspiration lung disease, GERD/G-tube feeds.

– Underlying diagnosis unknown

• High inpatient utilization, moderate outpatient utilization…

• But ++outstanding issues

– No recent hip/spine surveillance or follow-up

– Feeding intolerance, low fluid intake

– Lapsed immunizations

– No dental care x years

– No school attendance; no family support

Preventive Care

– To protect, promote and maintain health and well-

being and to prevent disease, disability and death

ACPM.org

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Well-Child Tools and Guidelines

Well-Child Tools and Guidelines

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• Increased adherence 5 out of 8

universal recommendations

• High satisfaction amongst health

care providers and parents

• Overall suboptimal adherence

rates

• Desire for better integration

Preventive Care for CMC

0

5

10

15

20

25

30

35

40

45

50

Lapsed subspecialty

follow-up

No identified primary care

provider

Outstanding preventive

care need

Outstanding community

service need

*Preventive care need = hip surveillance, immunizations, Ca/Vit D intake, dental care, GJ

tube changes

%

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The “Complex” version?

Health Supervision

Age

Date

**Discuss and Address Patient/Family Goals and Priorities**

SYSTEMS BASED REVIEW SAMPLE ISSUES

HEENT Eyes Regular eye exams?

Services for visual impairment

Corneal abrasion risk

Ears Hearing screened?

Sign language, adaptive technology?

Hearing impaired supports?

Mouth Dental hygiene

Dentist/Orthodontist care and cleaning

Dental insurance

NEURO Epilepsy Review recent seizure history

Seizure safety and protocol

Technology VP shunt care and monitoring

Baclofen pump care and monitoring

Tone Assessment

CVS Cardiac Document BP, if indicated

Echo or ECG indicated?

Need for SBE prophylaxis?

Vascular Difficulty IV access? Care plan

RESP General Aspiration risk, history, prevention

Chest physio

Home Suction Indicated? Document baseline

Home Oxygen,

Non-Invasive

Vent.,

Tracheostomy

Current settings

Equipment sizes

Need for O2

Skin integrity

Emergency plan

Emergency kit

CPR training

Tracheostomy

only

Frequency of trach and tie change

Frequency of suctioning

Humidity

Colonization

GI Motility issues (constipation, GERD)

Dumping syndrome?

NUTRITION General Current feeding – type, rate, method

Growth parameters

Dietician involvement

Feeding assessments / study

Nutritional deficiencies and screening

TPN Equipment

TPN orders

Routine monitoring

GU UTI history?

Hydration status

Risk of nephrocalcinosis and stones

MSK Hips Clinical/radiographic Surveillance

Spine Clinical/radiographic Surveillance

ENDO Bone Health Fracture history

Investigations – labs, imaging

Intervention: Ca, Vitamin D,

bisphosphanates

Menstruation

Thyroid Screen if indicated

DERM Pressure sores

Rashes

HEME

ID Immunizations Routine

Additional

GENERAL REVIEW SAMPLE ISSUES

SYMPTOMS Pain/Irritability

Sleep disturbance

Other

MEDICATIONS General review – still indicated? Dosing?

Prescriptions, renewals, orders

Routine monitoring

Side effects, interactions

CAM

Special funding required

ALLERGIES Document

TECHNOLOGY Home

equipment Document

Requirements, funding

CVL Review need for CVL

Emergency plan if blockage

Emergency plan if fever

Dressing changes, flushes

Enteral tube Document size and length

Tube changes and frequency

Troubleshooting

Emergency care plan and supplies

Funding and equipment

General surgery or GT nurse support

DEVELOPMENTAL Abilities Current abilities and communication

Professionals Developmental peds

OT, PT, SLP, IDP

PSYCHOSOCIAL Coping,

Wellness Family, parent, sibling

Need for mental health support?

HEADSS

Social supports Informal supports

Social work access

Respite care

Domains Family/Home

School

Leisure

Safety

FINANCIAL Family Parent work status

Income stressors

Funding Supplemental insurance

Current funding? Applications needed?

HEALTH CARE

ACCESS

Primary care provider identified

Acute appointments

Routine appointments

Subspecialty follow-ups

Recent hospitalizations and ER visits

Upcoming surgeries/procedures

TRANSITION AND

DISCHARGE

PLANNING

Discharge

planning

Review goals of Complex Care involvement

Consider discharge plan

Transition

planning

Consider early transition planning for adult

services

ANTICIPATORY Advance directives

Family meeting indicated

DOCUMENTATION Care plan

ER letters

Additional

Guidelines and

Diagnosis-based

surveillance

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Principles of Health Supervision

• Comprehensive

• Not prescriptive

• Evidence-based where possible

– Intended to guide inquiry, not make specific

recommendations

• Tailored

• Longitudinal

Summary: Routine Preventive Care

• When? How often?– Anytime

• Where?– Anywhere

• Why? – Addressing family goals and concerns

– Promoting preventive/anticipatory rather than reactive care

• How?– Standardize/document

– Engage families and share responsibility

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Pearls

• Ask the family

– Consider asking them to reflect/document in

advance

• Be flexible and opportunistic

– Seize opportunities AND book dedicated time

– View health surveillance over longer time span

• Plan for longitudinal/recurrent conversations

– Resuscitative and end-of-life care

Questions for Discussion

• What approaches/protocols have others

developed?

• Feedback or suggestions for the approach we

have presented?

• tdewan@cw.bc.ca (feedback, questions)

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References

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• "Preventive Medicine - American College Of Preventive Medicine". Acpm.org. N.p., 2016. Web. 8 Sept. 2016.

• "Greig Health Record | Clinical Tools & Resources | Greig Health Record | Canadian Paediatric Society”. www.Cps.ca. N.p., 2016. Web. 19 Sept. 2016.

• “Rourke Baby Record.” http://www.rourkebabyrecord.ca/ N.p., 2016 Web. 17 Sept. 2016.

• “Bright Futures” https://brightfutures.aap.org/Pages/default.aspx. N.p., Web. 17 Sept. 2016.

• Zuckerman, B., Stevens, G. D., Inkelas, M., & Halfon, N. (2004). Prevalence and correlates of high-quality basic pediatric preventive care. Pediatrics, 114(6), 1522–1529. http://doi.org/10.1542/peds.2004-0635

• Rourke, L., Godwin, M., Rourke, J., Pearce, S., & Bean, J. (2009). The Rourke Baby Record Infant/Child Maintenance Guide: do doctors use it, do they find it useful, and does using it improve their well-baby visit records? BMC Family Practice, 10(1), 28. http://doi.org/10.1186/1471-2296-10-28

• Bethell, C., Peck, C., & Schor, E. (2001). Assessing health system provision of well-child care: The Promoting Healthy Development Survey. Pediatrics, 107(5), 1084–1094. http://doi.org/10.1542/peds.107.5.1084

• Bethell, C., Reuland, C. H., Halfon, N., & Schor, E. L. (2004). Measuring the quality of preventive and developmental services for young children: national estimates and patterns of clinicians’ performance. Pediatrics, 113(6 Suppl), 1973–1983. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/15173469\nhttp://pediatrics.aappublications.org/content/113/Supplement_5/1973.full.pdf

• Dubey, V., Mathew, R., Iglar, K., Moineddin, R., & Glazier, R. (2006). Improving preventive service delivery at adult complete health check-ups: the Preventive health Evidence-based Recommendation Form (PERFORM) cluster randomized controlled trial. BMC Family Practice, 7(1), 44. http://doi.org/10.1186/1471-2296-7-44

• Tsai, E. (2008) CPS Position Statement. Advanced care planning for pediatric patients. http://www.cps.ca/documents/position/advance-care-planning

• Leblanc, T & Tusky, J. (2016) Discussing goals of care. http://www.uptodate.com/contents/discussing-goals-of-care

• Committee on Bioethics and Committee on Hospital Care. (2000) Palliative care for children. Pediatrics 106(2): 351-357.

• Harrison, C. (2004) CPS Position Statement: Treatment decisions. http://www.cps.ca/documents/position/treatment-decisions