Linking Individual Needs of Children with Services

Goals and Objectives

~ 250 children with SIGNIFICANT medical complexity (2+ organ systems or significant medical technology use) Examples – IBD and cerebral palsy; tracheostomy with congenital heart disease.
 Outpatient pediatric care for these children and their healthy siblings on Cham 5.
 When hospitalized, we are the attending of record on weekdays. In the PICU we stop by to offer our support with discharge planning.
 We offer 24-7 access to doctor for patients and for medical teams (718) 741-2507 (Rose’s # goes to a call center after hours). This is the # you should call if you need something.

Dr. Denise Nunez, Pediatrician & Medical Director
Dr. Kristie Malik, Pediatrician
Rose Jara, Patient Representative, helps with scheduling appointments, working with nursing agencies and supply companies; x2507; office on CHAM 5
Katina Quesinberry, LCSW – Social Work, helps with discharge planning, school, nursing, ACS related issues; x2279; office on CHAM 8
Jen Gomez, RN – helps with technology dependencies, medication reconciliation, nursing issues, wounds; leader of LINCS QI dental initiative; office on Wayne 8

We accept referrals via email requests with ~3 lines about the patient in question. The family must want a new doctor and the child must be living at home with insurance we accept (not NJ Medicaid). We have a wait list at the moment but it is less than 6 weeks.

Goals and Objectives for the LINCS Rotation

I. Provide patient care that is developmentally and age appropriate for children with multiple complex chronic conditions in a patient centered medical home (PCMH). Learn the components of a PCMH.
II. Demonstrate the ability to identify key history and exam needed to evaluate children presenting with a wide array of conditions related to multiple organ systems and/or technologies.
III. Use a logical and appropriate clinical approach to the care of patients presenting for primary care or acute visits, applying principles of evidence-based decision-making and problem solving.
IV. Know general indications for subspecialty referrals, counsel families on how to interact with subspecialists and assess families understanding of subspecialists’ recommendations or plans.
V. Observe and participate in challenging discussions with patients and families – examples include discussions related to difficult decisions (placement of feeding tube), palliative care and concerns about medical neglect.

Patient Care

1. Participate in the outpatient care of patients with multiple complex chronic conditions.

   1. Perform visits with patients in LINCS clinic, precept with attending and implement plan.

   2. Evaluate for peri-operative or post-operative risks related to anesthesia and/or procedure in a comprehensive pre-surgical visit.

      1. Communicate with subspecialists about patient care.

      2. Identify specific question for consultations.

      3. Utilize electronic documentation and other mechanisms to communicate about care plans, family understanding and barriers to care.

   3. Participate in joint visits with subspecialists (neurology, physiatry, speech/swallow, other)

   4. Participate in assessment of dental care and hygiene, teaching of families about caries risks and dental hygiene, and application of fluoride varnish for children with disabilities.

   5. Participate in the evaluation of patients’ feeding regimens based on underlying condition, history of feeding-related symptoms or complications and anthropometrics and laboratory tests.

   6. Manage vaccination schedules for children with a variety of different conditions and/or on medications.

      1. Learn exclusions for live virus vaccinations

      2. Learn indications for PPSV23 & early administration of meningococcal vaccine

      3. Discuss considerations for cognitively impaired youth and HPV

   7. Participate in assessing for home needs and helping families connect with community resources:

      1. Home health aides, home attendants

      2. Home nurses, visiting nurses

      3. Pharmacies

      4. Home hospice

      5. Preventive services and child protection

      6. CPSE, CSE, school services

2. Hone physical examination skills specific to children with physical and intellectual disabilities:

   1. General examination of patient

   2. Evaluation of technologies on or in patient (feeding tubes, tracheostomy, pacemaker, central line, VP shunt, cochlear implant, etc)

   3. Evaluation of muscle tone and range of motion of extremities in physically disabled children

   4. Respiratory examination of child with tracheostomy

3. Polypharmacy

   1. Evaluate medications for contraindications in the setting of patient’s medical conditions and/or other medications

   2. Provide medication reconciliation including clear documentation in medical record, for caregiver and for home services providers

   3. Demonstrate understanding of risks for medication errors and impact on patients, families, and providers

Medical Knowledge

1. Describe how the primary care of children with multiple chronic conditions (medical complexity) differs from routine primary care, including changes in immunization schedules, management of growth and development, and learning and behavioral issues.

2. Conditions Generally Referred. Recognize, initiate management of patients with renal conditions who generally require referral.

3. Identify the role and general scope of practice of general pediatricians working to care for children with medical complexity and contrast with that of subspecialists; recognize situations where children benefit from the skills of specialists trained in the care of children; and work effectively with these professionals to care for children with medical complexity.

4. Identify the role of integrated palliative care in the care of children with medical complexity; recognize situations where children benefit from the skills of specialists trained in palliative care; and work effectively with these professionals to care for children with medical complexity.

Objectives

1. Participate in the integration of palliative care to primary and chronic care of pediatric patients

   1. Understand the differences between adult and pediatric palliative care

   2. Understand the differences between palliative care and hospice

2. Identify common medication interactions

3. Learn vaccination schedules for children with a variety of different conditions and/or on medications:

   1. Vaccine-specific considerations:

      1. exclusions for live virus vaccinations

      2. indications for PPSV23

      3. indications for early administration of meningococcal vaccine

   2. Patient-specific considerations

      1. immunocompromised patients including pre-transplant and post-transplant, DiGeorge syndrome, immunoglobulin deficiencies, etc

      2. cognitively impaired youth and HPV

4. Identify, explain, manage and refer, as indicated, children with technology-dependencies:

   1. Feeding tubes

   2. Tracheostomy

   3. Pacemaker

   4. Cochlear implant

   5. Ventricular shunt

   6. Vagal nerve stimulator

   7. Central line or catheter

5. Discuss dental care issues in children with special health care needs:

   1. Discuss the factors contributing to increased risk for dental caries, gingivitis and other dental issues

   2. Discuss mitigating factors to prevent or treat dental issues

6. Nutrition in medically complex children

   1. Evaluation of patients’ feeding regimens based on underlying condition, history of feeding-related symptoms or complications and anthropometrics and laboratory tests.

   2. Understand indications for feeding tubes

Interpersonal and Communication Skills

1. Augment skills in working within an interdisciplinary team

   1. Participate in family meetings including preparation, meeting and implementation and follow up of team plan

   2. Facilitate communication in all directions within a team

   3. Identify and address boundaries to team cohesion

2. Participate in discussion of palliative care and/or hospice with patients and families

3. Hone communication with patients, parents and/or caregivers in all settings

   1. Help families navigate disagreements between providers

   2. Help families navigate disagreements between family and providers

   3. Participate in difficult conversations with patients, parents and/or caregivers

      1. Decisions about feeding tube or tracheostomy placement

      2. Discussions about poor or unknown prognosis

      3. Discussions about goals of care

      4. Discussions about advance care directives (related to plans for patient if caregiver unable to care for disabled patient, related to plans for if patient’s condition acutely or progressively worsens)

      5. Discussions about providers’ concerns that patient’s medical needs are not being met.

   4. Participate in assessment of medications, equipment and supplies

      1. Assess parent/caregiver understanding of medications

      2. Demonstrate appreciation of literacy and healthy literacy and numeracy effect the care of children with medical complexity

      3. Provide culturally competent education to family, home services providers and patients as indicated

      4. Assess parent/caregiver understanding of equipment and supplies

      5. Learn how to guide families to access appropriate medical equipment and supplies for patients at home

      6. Help patients/families understand their role in accessing care both during regular business hours and after hours

4. Engage siblings and extended families of children with medical complexity

   1. Participate in discussions with families about the effect of chronic conditions on family and individuals within the family (financial, social, medical, career, etc)

   2. Identify unmet needs of siblings (medical, social, educational, etc)

Professionalism

1. Demonstrate respect, compassion, and integrity; a responsiveness to the needs of patients and society that supersedes self-interest; accountability to patients, society, and the profession; and a commitment to excellence and on-going professional development

2. Demonstrate a commitment to ethical principles pertaining to pediatric complex care, general pediatrics and pediatric palliative care

3. Demonstrate respect for and sensitivity to patients’ and families’ age, gender, race, ethnicity, religion, sexual orientation, family status and disabilities.

4. Respond to patients, family, housestaff and other professional and staff concerns/questions in a timely and respectful manner.

Practice Based Learning and Improvement

Goals
I. Identify strengths, deficiencies and limits in one’s knowledge and expertise; set learning and   improvement goals; and identify and perform activities that will advance one’s knowledge and experience
II. Facilitate the learning of other health care professionals

Objectives
I. Maintain a log of primary diagnoses of patients seen and all procedures observed for self and program assessment of experience.
II. Apply principals learned at LINCS to primary care panel patients

System Based Practice

1. Identify common medication interactions

   1. Utilize systems to prevent co-administration of medications that interact and/or adjust dosing as indicated

2. Participate in the integration of palliative care to primary and chronic care of pediatric patients

   1. Understand the differences between adult and pediatric palliative care

   2. Understand the differences between palliative care and hospice

   3. Participate in discussion of palliative care and/or hospice with patients and families

3. Participate in transition care planning.

   1. Transition care settings:

      1. Inpatient to outpatient; outpatient to inpatient

      2. To or from inpatient rehabilitation center (acute, chronic)

      3. From pediatrics to adult care providers

      4. From complex care pediatrics at LINCS to general pediatrics

   2. Identify risks present during all transitions of care

      1. Address boundaries to optimal transition care

      2. Educate patients and families about their roles in mitigating risk

   3. Educate adolescents about transition process to adult providers

      1. Discuss personal responsibility for own care

      2. Assess for understanding of conditions

      3. Assess for autonomy in personal care (appointments, refills, communicating with medical personnel, etc)

      4. Assess for knowledge of medications and self-efficacy in taking

   4. Educate patients/families on navigating adult care settings

      1. Learn and teach about different systems and approaches

      2. Identify and refer to appropriate adult providers

   5. Encourage early communication about adolescent to adult providers transition

4. Understand public health impact of growing population of children with medical complexity

   1. Explain difference between children with special health care needs (CSHCN) and children with medical complexity (CMC)

   2. Understand resource utilization of CSHCN, CMC and typical children

   3. Understand impact of marginalized status or adverse events (immigration, poor English fluency, non-legal status of child and/or parent, involvement in criminal justice system, history of abuse of child and/or caregiver, etc ) on health, access to care and chronic care

   4. Explain the impact of under-vaccination in special populations of children with medical complexity