A65-lb., 25-year-old, male cerebral palsy (CP) patient with pneumonia arrives at your Children’s Hospital via ambulance. Although chronologically this patient is an adult, in many ways he’s still a child, and the parents told the paramedics that they’ve always taken their son to Children’s. You’ve been the treating physician during the patient’s frequent hospital stays. Is Children’s Hospital still the best destination for this patient? Will the family’s insurance still cover an admission at Children’s?
During the hospital stay, the patient has complications. He has to be intubated. IV antibiotics need to be continued for a course after hospital discharge. A long recovery is expected. Is it time for the family to consider discharge to a long-term care facility rather than home? Are there any long-term care facilities in the area that accept young adult CP patients?
As the treating pediatric hospitalist, what is your role in helping this patient and his family transition from pediatric care to an adult-care medical home?
Approximately 8.6 million children in the United States age 10–17 have a disability, according to the Adolescent Health Transition Project, which is housed at the Center on Human Development and Disability (CHDD) at the University of Washington, Seattle. Of these, 16% (or 1.4 million) experience limitations in their activities and will likely have difficulty making the transition to adult healthcare.1
Given enough time in the profession, every pediatric hospitalist will face the challenge of transitioning patients from child-centered to adult-oriented healthcare systems. The good news: Medical advances have made it increasingly possible for children who once would have died in childhood to survive into adulthood.
Example: One in 2,500 children is born with cystic fibrosis (CF); however, with the recent, unprecedented increase in the success of diagnosis and treatment modalities for the pulmonary component of CF, the estimated median survival age for those born in the 1990s is now 40.2 As of the year 2004, 41.8% of the 22,301 patients with CF were 18 or older.3 In fact, each year nearly 500,000 children with special healthcare needs reach adulthood, and 90% of children with a chronic illness and/or disability now survive to adulthood.4,5
The bad news: Many physicians whose practices focus on adults aren’t familiar with disease processes, such as CF, that have historically been considered pediatric illnesses.
For patients with chronic physical and medical conditions—particularly for those who are medically fragile and/or technology-dependent—the transition can prove especially difficult. And pediatric hospitalists in children’s hospitals face different challenges than those in facilities that admit patients of all ages. One thing remains the same, though, the goal: to provide uninterrupted, coordinated, developmentally appropriate healthcare.
There are several good reasons for patients to be transitioned from pediatric care to adult care. First, as patients age medical issues develop that are beyond the sphere of pediatricians. In CF, for example, diabetes and biliary tract problems occur with greater frequency in adults. However, because so few CF patients historically survived to adulthood, few physicians who care for adults learned about the disease. Thus, the pediatricians who cared for CF patients continued to do so, leading to situations in which 30- and 40-year-olds have been hospitalized with children. But is that truly appropriate?
Adult patients may have high blood pressure, gynecologic issues, osteoporosis, or other problems the pediatrician may not be prepared to deal with. Example: A primary care pediatrician has been the “medical home” for a small, cerebral palsy patient since she was 10. She’s now 25. If she presents with a breast mass, will the pediatrician pick up on the condition adequately? Will they know where to send the patient?
“Adult providers know those systems better,” says Brett Pickering, MD, director of the Special Needs Clinic at San Diego’s UCSD Medical Center, Department of Pediatrics.
The adult patient has different emotional needs than the pediatric patient, and the pediatric hospitalist may not be in tune with adult needs. “Pediatricians do a lot of handholding,” says Dr. Pickering. “Adult providers are more matter of fact.”
Age restrictions on admissions, insurance, and funding issues also affect transition. For example, funding under the Social Security Act’s Title V Children with Special Health Care Needs typically ends at 21 despite a patient’s education or employment status.
Given these factors, what is the appropriate age to transition care from a pediatric floor or facility to an adult-oriented unit? According to the American Academy of Pediatrics, the responsibility of pediatrics continues through age 21, but there’s no hard-and-fast rule.
The transition to adult-care facilities is typically a lengthy process involving multiple specialties and possibly joint care during a transition period—and a process that should ideally be coordinated by the patient’s primary care pediatrician. But hospitalists know that circumstances are typically far from ideal.
First, during a transition, the patient may feel abandoned by the medical team they’ve known for most of their lives. It takes time to develop trust and confidence in a new doctor. In this respect, pediatric hospitalists in facilities that care for patients of all ages have an advantage over hospitalists in children’s hospitals. They can call on their adult-care colleagues in other areas of the hospital for consultations and transfer care over time.
“The pediatric hospitalist must make bridges with their adult colleagues who are comfortable [with the issues] and willing to take on this patient population,” says Dr. Pickering.
Second, parents may feel an emotional dependency on the pediatric team and can feel threatened by the adult environment as they lose some control. To the parents, the patient will always be their child, Dr. Pickering notes.
Third, pediatric hospitalists may be reluctant to let go, particularly if they feel adult services are inferior to those they have provided, which brings us to the fourth major challenge: To whom do you transition care?
Many adult healthcare providers receive only limited training in disorders associated with pediatrics (e.g., CF, spina bifida). The Cystic Fibrosis Foundation is leading the way in educating physicians in what have historically been considered pediatric problems. In the 1980s, the foundation launched an educational program to train physicians already involved in adult pulmonary care in CF. Unfortunately, education in other areas has lagged. And finding a physician with both an interest in and knowledge of such disorders can prove challenging.
“It’s incumbent on our adult colleagues to take these patients on, but they need training,” says Dr. Pickering. “Long-term issues require long-term solutions.
How do you jazz people up to take care of this population?” she asks. Physicians must have at least a little bit of desire to learn about these special patient populations, but academic institutions also need to identify core knowledge and skills and make them part of training and certification requirements for primary care residents and physicians in practice. Continuing medical education for physicians, nurses, and allied healthcare professionals should include drug dosing, medical complications seen in transition populations, and related developmental, psychosocial, and behavioral issues.
Steps to a Successful Transition
So what should hospitalists do? In an April 2005 presentation at the SHM Annual Meeting, Joseph M. Geskey, DO, assistant professor of pediatrics and medicine, and director of inpatient pediatrics at Penn State College of Medicine, Hershey, Penn., recommended that pediatric hospitalists take the following steps:
- Identify the key aspects of transition;
- Bring stakeholders together;
- Identify transitional needs;
- Identify and provide resources;
- Create an audit and evaluation process;
- Decide who will hand off care of these patients when they are admitted to the hospital (the hospitalist or the disease-specific specialist);
- Create an up-to-date medical summary that is portable and accessible. It should include important historic information, such as diagnostic data, procedures, operations, and medications;
- Upon patient discharge, include specific instructions on who to call if the patient develops a problem after leaving the hospital;
- Create a working group in your area that represents pediatric and adult hospitalists to examine transition issues in the hospitalized patient; and
- Facilitate effective communication between patients and their families, primary care physicians and specialists; and
- Know when to transfer care to a center with more expertise in caring for specific conditions.
Just as every patient is different and every patient’s circumstances are unique, every transition needs to be individualized. “It’s hard to set policy,” says Dr. Pickering. Open, direct communication, specific discharge instructions, an up-to-date medical summary and knowledge of the adult resources in your area can make any transition a success. TH
Keri Losavio regularly writes for “Pediatric Special Section.”
- Adolescent Health Transition Project, Center on Human Development and Disability (CHDD) at the University of Washington, Seattle. Available at http://depts.washington.edu/healthtr/Providers/intro.htm. Last accessed January 16, 2006.
- Bufi PL. Cystic fibrosis: therapeutic options for co-management. Available at www.thorne.com/altmedrev/fulltext/cystic.html. Last accessed January 16, 2006.
- Cystic Fibrosis Foundation: 2004 Patient Registry Report. Available at www.cff.org/living_with_cf/. Last accessed Jan. 26, 2006
- Newacheck PW, Taylor WR. Childhood chronic illness: prevalence, severity, and impact. Am J Pub Health. 1992;82(3):364-371.
- Committee on Children with Disabilities and Committee on Adolescence, American Academy of Pediatrics. Transition of care provided for adolescents with special health care needs. Pediatrics. 1996;98(6):1203–1206.
Pediatric Special Section
In the Literature
By Mary Ann Queen, MD, and Amita Amonker, MD
Utilization of a Clinical Pathway Improves Care for Bronchiolitis
Cheney J, Barber S, Altamirano L, et al. A Clinical Pathway for Bronchiolitis is Effective in Reducing Readmission Rates. J Pediatr. 2005;147(5):622-626.
Bronchiolitis is the most common respiratory illness in infants that results in hospitalization. Many hospitals have developed clinical pathways to assist clinicians in managing this common infection; however, the effectiveness of such pathways has not been fully studied. Of those clinical practice guidelines analyzed, varying results have been identified.
To determine the effectiveness of a bronchiolitis pathway, this study compared infants managed prospectively using a pathway protocol with a retrospective analysis of infants managed without a pathway. Infants from a tertiary care children’s hospital and three regional hospitals were enrolled prospectively from May 2000 to August 2001. (One must note this study was completed in Australia, hence the difference from the typical Northern Hemisphere winter months.) The historical control group was admitted between May 1998 and August 1999 at the same four institutions. Two-hundred-twenty-nine patients admitted with bronchiolitis were treated using the pathway protocol. These patients were compared with 207 randomly selected control patients who were admitted prior to the institution of the bronchiolitis pathway. All patients were less than 12 months of age with their first episode of wheezing necessitating hospitalization.
These particular guidelines were developed and used to promote consistency of nursing management during a separate study on bronchiolitis. The pathway included an initial admission assessment. It also stated parameters for initiating and stopping both oxygen therapy and intravenous fluid therapy along with discharge guidelines.
The authors found no significant difference in length of stay or time in oxygen. Fifteen infants (7.2%) in the control group required readmission within two weeks of discharge compared with two infants (0.9%) in the pathway group (p=.001). Of the control group 33.8% received intravenous fluids (IVFs) compared with 19.2% of the pathway infants (p=.001). There was also greater steroid use in the control group but no difference in antibiotic usage. Specific data regarding steroids and antibiotics is not included.
The clinical pathway appears a useful tool for discharge planning with a decreased incidence of hospital readmission when specific discharge goals are utilized. The authors also reported a decreased use of IVFs in the pathway group. This was attributed to having specific parameters (O2 required, RR>60/min or inadequate oral feeding) for when to initiate them. It is unclear from the article whether meeting a single parameter or all three parameters triggered the initiation of IVFs.
The authors also point out the limitation of using a historical control given annual variations in severity sometimes seen with bronchiolitis. They attempted to minimize this by collecting data for each group over two consecutive winters.
Preprinted Paper Orders Reduce Medication Errors
Kozer E, Scolnik D, MacPherson A, et al. Using a preprinted order sheet to reduce prescription errors in a pediatric emergency department: A randomized, controlled trial. Pediatrics. 2005(116):1299-1302.
Medical errors, including medication errors, are common and are written about with increasing frequency in the lay press. Accreditation bodies and individual hospitals are striving for ways to decrease these errors. In some instances potential solutions include purchasing new computer systems for electronic physician order entry. This study looks at whether implementing a preprinted paper order sheet can decrease the incidence of medication errors in a pediatric ED.
This randomized, prospective study occurred during 18 days in July 2001 with nine days randomly assigned into each arm. The first arm used the hospital’s regular blank order sheets for all medication orders. The second arm used the experimental preprinted order sheet. This sheet required the staff to specify the dose, weight-adjusted dose, total daily dose, route of administration, and frequency for each medication ordered. Two medical students entered the data into a database that included information about patients’ demographics, diagnosis, acuity, details on the prescribing physician, the form used, and all medications prescribed and given to the patient. This information was subsequently reviewed by two blinded pediatric emergency physicians who determined if an error occurred and, if so, the degree of the error.
During the study period there were 2,157 visits to the ED with 95.4% charts available for review. Seven-hundred-ninety-five medications were prescribed with 376 ordered on the new form. Drug errors were identified in 68 (16.6%) orders when the regular form was used and in 37 (9.8%) orders on the new form. There was one severe error and 13 significant errors using the new form and 36 significant errors on the regular form. The new form was associated with a twofold decrease in the risk for a medication error even after accounting for the level of training of the ordering practitioner. There was an even greater reduction in the risk for a severe or significant error.
The literature has shown that computerized physician order entry can reduce the number of medication errors in the inpatient setting; however, it is not available in many hospitals and its effectiveness has not been shown in EDs. The authors point out that most medications ordered in the ED are prepared and given by nurses. The benefits of a computerized system in this setting is unclear.
This study occurred over an 18-day period with the new form only used for nine days outside of an earlier pilot period. One could speculate that the novelty of the form encouraged the physicians to examine orders more carefully, leading to decreased errors. It is unknown if the decrease in errors would be sustained over time.
Also important to note is that the definition of an error was limited to a mistake in dose, interval between doses, dose unit, and/or route. Errors such as legibility, medication allergy, or drug interactions are not discussed. However, as hospitals strive to implement technologies aimed at reducing errors this simple, economical solution may be of benefit.
No Association between Kawasaki Disease and Adenovirus
Shike H, Shimizu C, Kanegaye J, et al. Adenovirus, adeno-associated virus and Kawasaki disease. Pediatr Infect Dis J. 2005;24:1011-1014.
Kawasaki disease is a self-limited acute vasculitis of children with a suspected infectious etiology and defined seasonality. In an attempt to find a clue for a possible infectious cause of Kawasaki disease this study examined the seasonality of different viruses. The study recognized a similar bimodal seasonality for some serotypes of adenovirus. Adenovirus accounts for 5%-10% of respiratory tract infections in children and can mimic the clinical manifestations and laboratory abnormalities seen in Kawasaki disease.
This study postulated that infection with a non-cultivatable adenovirus or antecedent adenovirus infection might be a trigger for Kawasaki disease. The study analyzed patient samples using polymerase chain reaction primers for all 51 adenovirus serotypes, viral culture, and neutralization assay for the most common adenovirus serotypes. This study also investigated possible involvement of adeno-associated viruses (AAVs), because AAVs depend on helper viruses, such as adenovirus.
Kawasaki disease patients were enrolled during a 25-month period from February 2002 to February 2004 at Children’s Hospital and Health Center in San Diego. Illness day one was defined as the first day of fever. Clinical samples used in this study were collected within the first 14 days of fever onset and before intravenous immunoglobulin (IVIG) therapy.
Nasopharyngeal swabs were cultured for adenovirus. Standard adenoviral neutralization assays for the five most common serotypes were performed with the use of patient sera. Sera with a titer of 1/10 or greater were scored as positive. At least two clinical samples from each patient, including throat swabs, sera or urine, were tested by quantitative polymerase chain reaction (PCR) for adenovirus and AAV.
Nasopharyngeal viral cultures were collected before IVIG administration on illness day three—14 from 70 Kawasaki disease patients. Of the 70 patients, 52 patients fulfilled four of the five classic criteria or three of the five criteria with abnormal coronary arteries by echocardiogram. Of the remaining 18 patients with atypical Kawasaki disease, six had coronary artery abnormalities. Overall, seven patients had coronary artery aneurysms and 22 patients had coronary artery dilatation. Viral cultures were negative in 66 of the 70 Kawasaki disease patients. The viral isolates in four patients were respiratory syncytial (one), parainfluenza virus 3 (one) and adenovirus (two). Therefore adenovirus culture was negative in 97% of patients.
Fifteen Kawasaki disease patients with negative adenovirus cultures were evaluated by PCR assay on at least two clinical samples. Fourteen patients had a negative PCR result. The throat swab from one patient collected on illness day seven contained 800 adenovirus genome copies.
Results of the adenovirus neutralization assays from 26 Kawasaki disease patients revealed that neutralization titers against any of the five most common adenovirus serotypes were undetectable in four of 26 patients.
None of the 36 samples from the same 15 acute Kawasaki disease patients described for the PCR assay was positive for AAV.
This study concluded that despite the striking similarities between Kawasaki disease and adenovirus infection there is no evidence to suggest a link between the two.
Epidemiology and Clinical Description of Severe, Multifocal Staphylococcus aureus Infection
Miles F, Voss L, Segedin E, et al. Review of Staphylococcus aureus infections requiring admission to a paediatric intensive care unit. Arch Dis Child. 2005;90(12):1274-1278.
Staphylococcus aureus is a recognized cause of multifocal infection with a high mortality rate. Children with community acquired S. aureus bacteremia (SAB) have higher frequencies of unknown foci compared with hospital-acquired SAB. Those children with S. aureus sepsis (SAS) presenting to the pediatric intensive care unit tend to have multisystemic disease—either by direct invasion or toxin production—before the diagnosis is made and treatment is initiated.
This study evaluates the clinical features and mortality from SAS in those children who required intensive care management. A retrospective review of clinical notes from all children with SAS admitted from October 1993 to April 2004 to the PICU in Auckland Children’s Hospital in New Zealand was undertaken. Children coded for SAS were identified from the PICU database.
All clinical notes were reviewed by one investigator using a standardized questionnaire that sought information on patient demographics, clinical findings, investigations, microbiology, and management in the PICU. Cases were included if blood or an isolate from a site that is normally sterile was positive for S. aureus. Hospital-acquired infection was defined by an isolate obtained at least 48 hours after hospital admission; community acquired infection was defined by an isolate obtained within 48 hours of admission.
Fifty-eight patients were identified with SAS over the 10-year study period; 55 were community acquired. Children with staphylococcal illness comprised 1% of all admission to the PICU. Musculoskeletal symptoms (79%) dominated presentation rather than isolated pneumonia (10%). An aggressive search for foci and surgical drainage of infective foci was required in 50% of children.
Most children (67%) either presented with multiple site involvement or secondary sites developed during their hospital stay. These pathologies included pneumonia, septic arthritis, osteomyelitis, and soft tissue involvement (cellulitis, fasciitis, abscess). A transthoracic echocardiogram detected valve abnormalities in only 5% of children, and these children were known to have pre-existing cardiac lesions. Few children (12%) presenting with methicillin-resistant S. aureus (MRSA) had community-acquired infection. The median length of stay in the PICU was three (mean 5.8, range one-44) days. Mortality due to SAS was 8.6%. Ten children had significant morbidity after discharge; these morbidities included renal failure requiring dialysis (three), an ongoing oxygen requirement at three months follow-up (two), and problems relating to limb movement and function (eight). Two children with epidural abscesses were paraplegic.
Community-acquired SAS affects healthy children, is multifocal, and has a high morbidity and mortality. It is imperative to look for sites of dissemination and to drain and debride foci. Routine echocardiography had a low yield in the absence of pre-existing cardiac lesions, persisting fever, or persisting bacteremia.
Long-Term Outcomes for Childhood Headache
Brna P, Dooley J, Gordon K Dewan T. The prognosis of childhood headache. Arch Pediatr Adolesc Med. 2005;159(12):1157-1160.
Headaches affect most children and rank third among illness-related causes of school absenteeism. Although the short-term outcome for most children appears favorable, few studies have reported long-term outcome. The objective of this study was to evaluate the long-term prognosis of childhood headaches 20 years after initial diagnosis in a cohort of Atlantic Canadian children who had headaches diagnosed in 1983.
Ninety-five patients with headaches who consulted one of the authors in 1983 were subsequently studied in 1993. The 77 patients contacted in 1993 were followed up in 2003. A standard telephone interview was used. Data were collected regarding headache symptoms, severity, frequency, treatment, and precipitants. Headache severity was simply classified as mild, moderate, or severe.
Sixty (78%) of 77 patients responded (60 of the 95 in the original cohort). At 20 years 16 (27%) were headache free, 20 (33%) had tension-type headaches, 10 (17%) had migraine, 14 (23%) had migraine and tension-type headaches. Having more than one headache type was more than at diagnosis or initial follow-up, and headache type varied across time. Of those who had headaches at follow-up, 80% (35/44) described their headaches as moderate or severe, although improvement in headaches was reported by 29 (66%). Tension-type headaches were more likely than migraine to resolve. During the month before follow-up, non-prescription medications were used by six (14%). However, 20 (45%) felt that non-pharmacological methods were most effective. Medication use increased during the 10 years since the last follow-up. No patient used selective serotonin receptor agonists.
This study concluded that 20 years after the diagnosis of pediatric headache, most patients continue to have headache, although the headache classification often changed across time. Most patients report moderate or severe headache and increasingly choose to care for their headaches pharmacologically. TH