Routine Preventive Care for Children with Medical Complexity

Transcription

1 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 70 th 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 1

2 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 CMC 1. Goal setting 2. Health supervision Conclusion Take home points Questions for discussion 2

3 1. Family Goal Setting Short term Long term Two Components Acute/Resuscitative 2. Health Supervision To facilitate appropriate preventive care and comprehensive review Evidence-based and standardized 3

4 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) 4

5 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 5

6 Examples: FFTM, Care Plans and Medical Roadmap FFTM Care Plan Full Code Medical Roadmap Example: Care Plan 6

7 Example: FFTM Example: Roadmap 7

8 Long term and Acute/Resuscitative Goal Setting: Family Team Meeting P-Physical E-Emotional S-Social S-Spiritual T Trajectory T-Trajectory Long Term Trajectory 8

9 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 wellbeing and to prevent disease, disability and death ACPM.org 9

10 Well-Child Tools and Guidelines Well-Child Tools and Guidelines 10

11 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 % Lapsed subspecialty follow-up No identified primary care provider Outstanding preventive care need Outstanding community service need *Preventive care need = hip surveillance, immunizations, Ca/VitD intake, dental care, GJ tube changes 11

12 Health Supervision The Complex version? 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, Current settings Non-Invasive Equipment sizes Vent., Need for O2 Tracheostomy Skin integrity Emergency plan Emergency kit CPR training Tracheostomy Frequency of trach and tie change only 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 Document equipment 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, Family, parent, sibling Wellness 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 Primary care provider identified ACCESS Acute appointments Routine appointments Subspecialty follow-ups Recent hospitalizations and ER visits Upcoming surgeries/procedures TRANSITION AND Discharge Review goals of Complex Care involvement DISCHARGE planning Consider discharge plan PLANNING Transition Consider early transition planning for adult planning services ANTICIPATORY Advance directives Family meeting indicated DOCUMENTATION Care plan ER letters Additional Guidelines and Diagnosis-based surveillance 12

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14 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 14

15 Ask the family Pearls 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? (feedback, questions) 15

16 References Cohen, E., Kuo, D. Z., Agrawal, R., Berry, J. G., Bhagat, S. K. M., Simon, T. D., & Srivastava, R. (2011). Children with medical complexity: an emerging population for clinical and research initiatives. Pediatrics, 127(3), "Preventive Medicine - American College Of Preventive Medicine". Acpm.org. N.p., Web. 8 Sept "GreigHealth Record Clinical Tools & Resources GreigHealth Record Canadian Paediatric Society. N.p., Web. 19 Sept Rourke Baby Record. N.p., 2016 Web. 17 Sept Bright Futures N.p., Web. 17 Sept Zuckerman, B., Stevens, G. D., Inkelas, M., & Halfon, N. (2004). Prevalence and correlates of high-quality basic pediatricpreventive care. Pediatrics, 114(6), Rourke, L., Godwin, M., Rourke, J., Pearce, S., & Bean, J. (2009). The RourkeBaby 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), Bethell, C., Peck, C., & Schor, E. (2001). Assessing health system provision of well-child care: The Promoting Healthy Development Survey. Pediatrics, 107(5), 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), Retrieved from 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), Tsai, E. (2008) CPS Position Statement. Advanced care planning for pediatric patients. Leblanc, T & Tusky, J. (2016) Discussing goals of care. Committee on Bioethics and Committee on Hospital Care. (2000) Palliative care for children. Pediatrics 106(2): Harrison, C. (2004) CPS Position Statement: Treatment decisions. 16