Special Patient Populations ARIZONA TREAT AND REFER PROGRAM:

1. Special Patient Populations ARIZONA TREAT AND REFER PROGRAM: A monitored, community specific, and clinically grounded effort to enhance the healthcare continuum for Arizonans

2. Goals of Training Course • Assessment of special patient populations and corresponding pathologies • Assessment of the developmentally disabled patient and those requiring chronic-care and their corresponding pathologies • Review of medical technologies: chronic care patients, in-home treatment technologies • Incarcerated Patients

3. ASSESSMENT OF SPECIAL PATIENT POPULATIONS: • “It is important for each community to determine how to define its special needs and how to best plan for and address those needs.” • Special Needs • Aging • Homelessness • Incarcerated http://ops.fhwa.dot.gov/publications/fhwahop09022/sn1_overview.htm

4. Developmentally Disabled • Developmental disabilities are a group of conditions due to an impairment in physical, learning, language, or behavior areas. These conditions begin during the developmental period, may impact day-to-day functioning, and usually last throughout a person’s lifetime. https://www.cdc.gov/ncbddd/developmentaldisabilities/facts.html

5. Risk Factors • Genetics • Parental health and behaviors (such as smoking and drinking) during pregnancy • Complications during birth • Infections the mother might have during pregnancy or that the baby might have very early in life • Exposure of the mother or child to high levels of environmental toxins such as lead. • For some developmental disabilities, such as fetal alcohol syndrome, we know the cause. But for most, we don’t. https://www.cdc.gov/ncbddd/developmentaldisabilities/facts.html

6. Known Examples of Specific Developmental Disabilities: • At least 25% of hearing loss among babies is due to maternal infections during pregnancy, such as cytomegalovirus (CMV) infection; complications after birth; and head trauma. • Some of the most common known causes of intellectual disability include fetal alcohol syndrome; genetic and chromosomal conditions, such as Down syndrome and fragile X syndrome; and certain infections during pregnancy, such as toxoplasmosis. • Children who have a sibling are at a higher risk of also having an autism spectrum disorder. https://www.cdc.gov/ncbddd/developmentaldisabilities/facts.html

7. Known Examples of Specific Developmental Disabilities • Low birth weight, premature birth, multiple birth, and infections during pregnancy are associated with an increased risk for many developmental disabilities. • Untreated newborn jaundice (high levels of bilirubin in the blood during the first few days after birth) can cause a type of brain damage known as kernicterus. • Children with kernicterus are more likely to have cerebral palsy, hearing and vision problems, and problems with their teeth. Early detection and treatment of newborn jaundice can prevent kernicterus. https://www.cdc.gov/ncbddd/developmentaldisabilities/facts.html

8. Kernicterus • Kernicterus is a bilirubin-induced brain dysfunction. • Bilirubin is a highly neurotoxic substance that may become elevated in the serum, a condition known as hyperbilirubinemia. • Hyperbilirubinemia may cause bilirubin to accumulate in the gray matter of the central nervous system, potentially causing irreversible neurological damage. https://www.cdc.gov/ncbddd/developmentaldisabilities/facts.html

9. Who Is Affected • Developmental disabilities occur among all racial, ethnic, and socioeconomic groups. Recent estimates in the United States show that about one in six, or about 15%, of children aged 3 through 17 years have a one or more developmental disabilities, such as: • ADHD • autism spectrum disorder • cerebral palsy • hearing loss • intellectual disability • learning disability • vision impairment • and other developmental delays https://www.cdc.gov/ncbddd/developmentaldisabilities/facts.html

10. Patient Assessment • While it is estimated approximately 20% of the population in the United States has some form of disability, those patients with developmental conditions, in particular, may pose distinct challenges in the prehospital setting. These conditions may either have unique medical issues associated with them or may force the EMS provider to use different approaches for common issues. http://www.emsworld.com/article/10741436/prehospital-assessment-of-patients-with-physical-disabilities

11. Patient Assessment • Obtain information from family members or caretakers • Obtain supplemental information pertinent to the patient’s care, such as information on medications, allergies, specialist care, feeding tubes, Foley catheters or shunts • Ask open-ended questions: “Is anything else that we should know?” • If available, find patient medication lists or recent medical documents http://www.emsworld.com/article/10741436/prehospital-assessment-of-patients-with-physical-disabilities

12. Patient Assessment • Further information may be complicated with unfamiliar care staff • Medical care for individuals with disabilities is often fractured • Many do not have a “medical home” or adequate support coordinating care • Communicate with individuals familiar with the patient’s needs • Make sure feeding tubes, Foley catheters and other devices are secure. • Do not pull any tubes out, secure with tape or gauze prior to moving pt • Patients often become experts in their disease and are crucial resources. http://www.emsworld.com/article/10741436/prehospital-assessment-of-patients-with-physical-disabilities

13. Patient Assessment • Can be a component of distrust or frustration with medical providers. • Face additional barriers finding providers who understand their condition • Engaging all patients can facilitate care • EMS providers should ask the patient about his or her condition • Always explain what you are doing to the patient. • Reassure patients in calm language at a level appropriate for the patient http://www.emsworld.com/article/10741436/prehospital-assessment-of-patients-with-physical-disabilities

14. Patient Assessment • In all discussions, word choice is important • Certain terms have negative connotations • “Retardation” used to be a medical term, it is no longer accepted • “Retarded” is considered derogatory by many patients and advocates • Use person-first language, “a person with a disability” rather than “a disabled person.” http://www.emsworld.com/article/10741436/prehospital-assessment-of-patients-with-physical-disabilities

15. ASSESSMENT • Each disability has a distinct pattern of characteristics • Each person with a disability is different • An open-minded and thorough assessment is crucial • Communicate with the patient and family • Anticipating and address associated medical issues • Provide supportive measures

16. Cerebral Palsy • Cerebral palsy (CP) is a non-progressive disorder of movement and posture caused by a brain injury in early development. Cerebral palsy is not a disease; it is a collection of symptoms, and most common is the spastic variety (70%–80%) • Issues for care: • Malnutrition due to swallowing and feeding problems • Mental disabilities • Seizures • Urinary incontinence • Difficulty with hearing, • Vision or speech • Spasticity with joint contractures - To decrease this spasticity, patients may have a baclofen pump implanted. EMS providers should note the possibility for pump failure. http://www.emsworld.com/article/10741436/prehospital-assessment-of-patients-with-physical-disabilities

17. Cerebral Palsy • Individuals with Cerebral Palsy may have dysarthria, personnel should be prepared to: • Communicate with augmentative communication devices such as a communication board. Communicating in whatever way is easiest for the patient will assist patient care. • The provider must be careful, however, not to make assumptions regarding intelligence based on communication difficulties. Although there are high rates of cognitive disabilities associated with CP, many individuals are highly intelligent. • As with all patients with disabilities, the provider must gauge an individual’s ability to comprehend and interact on a case-by-case basis. http://www.emsworld.com/article/10741436/prehospital-assessment-of-patients-with-physical-disabilities

18. Muscular Dystrophy • Muscular dystrophy is a motor disorder associated with structural abnormalities of dystrophin proteins involved in muscle function. This results in progressive weakness and motor dysfunction • Issues for care: • All muscle function is affected by muscular dystrophy • Affects mobility and patients often require assistance with transfers • Wheelchairs often utilized as the patient loses the ability to ambulate • Diaphragm and respiratory muscles will cause respiratory compromise Patients can ultimately become ventilator dependent, or may have Do Not Resuscitate orders that should be honored. • Respiratory muscle weakness combined with dysfunction of swallowing apparatus and upper airway muscles may lead to pneumonia, which is a common cause of death http://www.emsworld.com/article/10741436/prehospital-assessment-of-patients-with-physical-disabilities

19. Muscular Dystrophy Airway Management • If intubation is mandated: • Succinylcholine, a paralytic often used in rapid sequence intubations, is contraindicated for patients with muscular dystrophy. • Succinylcholine is a toxin to unstable membranes in any patient who has myopathy. • It is associated with rhabdomyolysis, pathologic hyperkalemia and death. Intubation without a paralytic may be an option, or a non-depolarizing agent like rocuronium may be used, although this agent has been shown to have a longer time to onset and prolonged recovery in patients with muscular dystrophy. • Sugammadex has been used as a reversal agent. http://www.emsworld.com/article/10741436/prehospital-assessment-of-patients-with-physical-disabilities

20. Spina Bifida • Spina bifida results from incomplete neural tube development, likely caused by folic acid deficiency in utero. The extent of associated symptoms varies with the degree to which the spinal cord remains open. • Issues for care: • Significantly associated with lower-extremity motor deficits/mobility issues • Should not be expected to ambulate on their own, although many can • May use crutches or wheelchairs as mobility aids • Should identify patient’s preference for transfers and facilitate independence • Providers should be alert to the increased risk of pressure ulcer formation • Sensory or cognitive deficits may not allow pt to identify ulcer formation • Motor limitations may preclude shifting of weight or repositioning • Careful cushioning for transport is of great importance http://www.emsworld.com/article/10741436/prehospital-assessment-of-patients-with-physical-disabilities

21. Spina Bifida cont. • Many patients with spina bifida will have a ventriculoperitoneal shunt, used to drain cerebrospinal fluid. • Shunts may become a locus of infection • Shunts can fail and produce symptoms of increased intracranial pressure • Increased pressure in children can cause irritability, vomiting or bulging fontanels • Adults may be nauseous or vomit, may complain of headache, or have decreased alertness. • Shunt failure must be considered in the differential of any patient with vague symptoms or altered mental status, and may suggest transport to a center with neurosurgical capabilities once stable • All healthcare providers must be aware that a large percentage of patients with spina bifida have a latex allergy. Latex allergies should be presumed and all medical equipment and gloves should be latex-free.

22. Down Syndrome • Down syndrome is a congenital disability due to an extra copy of the 21st chromosome (trisomy 21). It is associated with mild to severe cognitive delay, and a characteristic pattern of resultant pathology and physical manifestations. • Issues for care: • several medical problems including: • leukemia, • early-onset Alzheimer’s disease • Osteoporosis • sleep apnea • Cataracts • congenital heart defects. • Patients may be more sensitive to medications, although reports of greater sensitivity to agents such as atropine remain subject to debate

23. Down Syndrome • Distinct physical features, some affecting the airway. • Dental abnormalities, thickened and fissured lips or tongue, and progressive protrusion of the mandible due to a large tongue in a small oral cavity. • Patients may have large tonsils & adenoids, choanal stenosis, or glossoptosis • Patients tend to have a small tracheal diameter • Healthcare provider should use an ET tube at least two sizes smaller than generally used, given the risk of airway trauma • EMS providers must recognize the difficult airway and should intubate only with a back-up plan in place • Alternative airway options have associated concerns due to inflation and size

24. Chronic Care • Chronic care refers to medical care which addresses pre-existing or long term illness, as opposed to acute care which is concerned with short term or severe illness of brief duration. Chronic medical conditions include asthma, diabetes, emphysema, chronic bronchitis, congestive heart disease, cirrhosis of the liver, hypertension and depression. • Elements of Chronic Care: • Health Systems • Community • Self-Management Support • Delivery System Design • Decision Support • Clinical Information Systems http://www.improvingchroniccare.org/index.php?p=1:_Models&s=363

25. Long-term, Acute, and Chronic Care Individuals living in long-term, acute, and chronic care settings are among the most vulnerable populations during a public health emergency. Therefore, it is important for caregivers and planners who care for persons residing in these settings to be prepared and know how to respond in the midst of an emergency. https://www.cdc.gov/phpr/healthcare/planning2.htm

26. Long-term, Acute, and Chronic Care: Long-Term, Home Health, and Hospice Care Planning Guide for Public Health Emergencies https://www.cdc.gov/phpr/healthcare/planning2.htm

27. Chronic Diseases: The Leading Causes of Death and Disability in the United States Chronic diseases and conditions—such as heart disease, stroke, cancer, type 2 diabetes, obesity, and arthritis—are among the most common, costly, and preventable of all health problems. As of 2012, about half of all adults—117 million people—had one or more chronic health conditions. One of four adults had two or more chronic health conditions. Seven of the top 10 causes of death in 2010 were chronic diseases. Two of these chronic diseases—heart disease and cancer—together accounted for nearly 48% of all deaths. https://www.cdc.gov/chronicdisease/overview/index.htm

28. Chronic Diseases Obesity is a serious health concern. During 2009–2010, more than one-third of adults, or about 78 million people, were obese (defined as body mass index [BMI ≥ 30 kg/m2). Nearly one of five youths aged 2–19 years was obese (BMI ≥ 95th percentile). Arthritis is the most common cause of disability. Of the 53 million adults with a doctor diagnosis of arthritis, more than 22 million say they have trouble with their usual activities because of arthritis. Diabetes is the leading cause of kidney failure, lower-limb amputations other than those caused by injury, and new cases of blindness among adults https://www.cdc.gov/chronicdisease/overview/index.htm

29. Health Risk Behaviors that Cause Chronic Diseases • Health risk behaviors are unhealthy behaviors that can be changed. • lack of exercise or physical activity • poor nutrition • tobacco use • drinking too much alcohol • These health risk behaviors cause much of the illness, suffering, and early death related to chronic diseases and conditions. https://www.cdc.gov/chronicdisease/overview/index.htm

30. Health Risk Behaviors Cont. • In 2011 • 1/3 (36%) of adolescents, 38% of adults ate fruit less < once a day • 38% of adolescents, 23% of adults ate vegetables < once a day • Cigarette smoking (More than 42 million adults, 1 of every 5) • Accounts for more than 480,000 deaths each year • Each day 3,200+ adolescents smoke their first cigarette • 2,100 youth /young adults who smoke on occasion become daily smokers • Drinking (too much alcohol) • 88,000 deaths each year, more than half due to binge drinking • 38 million US adults report binge drinking an average of 4 times a month • Most have an average of 8 drinks per binge, most not alcohol dependent https://www.cdc.gov/chronicdisease/overview/index.htm

31. The Cost of Chronic Diseases and • Health Risk Behaviors • 2003: • Total cost of arthritis and related conditions was about $128 billion • nearly $81 billion for direct medical costs • $47 billion was for indirect costs associated with lost earnings • 2006: • Economic costs of drinking too much alcohol:$223.5 billion, ($1.90/drink) • Most costs due to: reduced productivity, health care, and crimes related • 2008: • Medical costs for Obesity were estimated to be $147 billion • Annual medical costs for Obese were $1,429 higher than normal weight ‘06 • 2009-2012: • Cost due to smoking was more than $289 billion/year. • Cost includes $133 billion in direct medical care for adults • More than $156 billion for lost productivity from premature death ‘05-’09 https://www.cdc.gov/chronicdisease/overview/index.htm

32. The Cost of Chronic Diseases and • Health Risk Behaviors • In 2010: • 86% of all health care costs for people with 1 > chronic medical conditions • Estimated $315.4 billion for Heart disease & Stroke costs, $193.4 billion direct medical costs, not including nursing home costs • Cancer care cost $157 billion • In 2012: • Estimated cost of diagnosed Diabetes was $245 billion including $176 billion in direct medical costs,$69 billion in decreased productivity • Decreased productivity includes: • Costs associated with work absences • Less productivity at work • Not working at all because of diabetes https://www.cdc.gov/chronicdisease/overview/index.htm

33. In-home Treatment Technologies Telemedicine is viewed as a cost-effective alternative to the more traditional face-to-face way of providing medical care (e.g., face-to-face consultations or examinations between provider and patient) that states can choose to cover under Medicaid. This definition is modeled on Medicare's definition of telehealth services (42 CFR 410.78). Note that the federal Medicaid statute does not recognize telemedicine as a distinct service.  https://www.medicaid.gov/medicaid/benefits/telemed/index.html http://www.alacriti.com/wp-content/uploads/2015/11/Telemedicine.jpg

34. In-home Treatment Technologies • Telemedicine : health care via real-time two-way communication between the patient and the healthcare provider at a distant site, using electronic audio and visual means. • Online face to face consultation • Examinations • Lower cost medical consultation • Prescription services • Early and accurate diagnosis • Efficiency • Supports 1st responder treatment • Preventative care • In home monitoring https://www.medicaid.gov/medicaid/benefits/telemed/index.html http://associationsnow.com/wp-content/uploads/2015/03/0318_telemedicine-800x480.jpg

35. Incarcerated Adults “Health care in the correctional system, which consists of local, state, and federal jails and prisons, should be available and provided at the same standard as health care in the general population.” Estelle v. Gamble, 1976 http://www.uptodate.com/contents/clinical-care-of-incarcerated-adults

36. Incarcerated Adults • Increased risks for transmission of infection • Correctional medicine may be demanding and costly • Overcrowding is a risk factor for communicable diseases http://www.uptodate.com/contents/clinical-care-of-incarcerated-adults

37. Incarcerated Adults • Infection control in correctional facilities adversely impacted • Laundry services limited • Infection control training http://www.uptodate.com/contents/clinical-care-of-incarcerated-adults

38. Children of Incarcerated Parents According to a Department of Justice report from the year 2007, 2.3 percent of children in the United States (nearly 1.7 million children) had a parent incarcerated in state or federal prison. In addition, at least 1 in 50 children had a parent incarcerated in local or county facilities http://www.uptodate.com/contents/developmental-and-behavioral-implications-for-children-of-incarcerated-parents?source=see_link

39. Children of Incarcerated Parents Between 1995 and 2004, the inmate population grew by an average of 3.5 percent annually to approximately 2.1 million prisoners, corresponding to an incarceration rate of 726 per 100,000 residents. Because a majority of prisoners (52 percent of state and 63 percent of federal prisoners) are parents, growth in the incarcerated population is reflected in increasing numbers of affected children, an increase of 80 percent between 1991 and 2007 http://www.uptodate.com/contents/developmental-and-behavioral-implications-for-children-of-incarcerated-parents?source=see_link

40. Treat & Refer Challenges • Intangible moral, personal and psychological issues • Extended time to patient contact • Handcuffs and leg irons • Juvenile facilities • Infectious epidemic and pandemic diseases • Unknown history http://www.emsworld.com/article/10319375/incarcerated-patients

41. Treat & Refer Challenges • Medical History • Chemical dependency • Homeless and hygiene • Wound care • Monitoring system http://www.emsworld.com/article/10319375/incarcerated-patients

42. Treat & Refer Challenges • Starting IVs • History collection • Control • Respect • Judgment http://www.emsworld.com/article/10319375/incarcerated-patients

43. Incarcerated Adults • 2008, more than 7.3 million people (3.2% of all U.S. adult residents) were on probation, in jail or prison, or on parole at yearend. • Mid 2008, state/federal prisons had jurisdiction over 1,610,446 prisoners, 409,166 in state jurisdiction, and 201,280 in federal jurisdiction. • Average inmate age is 38--93.5% male, 6.5% female. • 2002, an estimated 229,000 jail inmates reported having a current medical problem other than a cold or virus. • In California in 2008-2009, inmate healthcare cost on average $12,442, $8,768 of which was for medical care. http://www.emsworld.com/article/10319375/incarcerated-patients

44. Treatment/Referral Plan • A treatment/referral plan for accessing social behavioral, and/or healthcare services addressing the patient’s immediate needs; • Appropriate treatment that matches the patients needs • Referral to appropriate service with transportation plan • Detailed documentation of patient response to treatment and referral destination of choice in EPCR system • Type of Destination (eDisposition.21): •                                 it4221.103 ‘Behavioral In-Patient’ •                                 it4221.102 ‘Behavioral Out-Patient’,        •                                 it4221.101 ‘Dialysis Center’ •                                it4221.100 ‘Hospice’ • These values were added as choices in addition to the standard NEMSIS values already available. If you already have these custom values in your system, please make sure your vendor maps them to these codes when sending data to AZ-PIERS

45. Questions or Comments?