Forum for Science, Industry and Business

Sponsored by:     3M 
Search our Site:

 

Culture clash: Kids with chronic illness face difficult transition to adult care

25.02.2005


For young patients who grow to adulthood with a chronic illness, leaving behind the pediatrician who may have saved their lives can be a tough transition.



More than half a million children with special health-care needs will turn 18 this year, the first generation to reach adulthood since sweeping medical advances ensured an unprecedented number would survive congenital conditions that until recently would have killed them. The influx is straining an already burdened health-care system, and patients and their physicians are feeling the added stress, according to a study by researchers at the University of Florida’s Institute for Child Health Policy appearing in the current issue of Pediatrics.

“We are looking at the very beginning of that wave, because this is the first generation to turn 18 since the technology and treatments have allowed them to survive to adulthood,” said lead researcher John Reiss, Ph.D., policy and program affairs chief at UF’s Institute for Child Health Policy. “That number will grow, and this will put phenomenal pressure on adult medicine.”


Doctors liken it to a culture clash, as adolescents and families adjust to a very different style of health care.

Young patients must say goodbye to the physicians they trust and who often took a team approach to their care by incorporating the opinions of many specialists to optimize a treatment plan for ailments such as cystic fibrosis, sickle cell disease or congenital heart conditions. Many adult practitioners tend to work more independently and are less familiar with how to manage these complex cases because they haven’t routinely encountered them in standard practice. The issue can be costly for patients, both physically and financially, said UF research associate Robert Gibson, Ph.D.

“It is like waking up in France one day,” Gibson said. “You don’t speak French and you have no idea how to get around the city and you say, ‘Wait a second. How did I get here?’”

Pediatric hospital systems or practices generally stop serving patients at the ages of 18 or 21, and about 600,000 patients with chronic illnesses are now reaching adulthood every year, Reiss said. Nearly 40 percent of the patients living with childhood-onset cystic fibrosis, for example, are 18 or older, according to the Cystic Fibrosis Foundation’s National Patient Registry. As these patients age, their care can be complicated by reproductive issues and other ailments, such as diabetes.

Past studies have shown the transition isn’t easy even for the average healthy adult ¾ often because of lack of insurance ¾ and many drop out of the health-care system until they become sick. However, a smooth shift is vital for young adults with chronic illness, who cannot afford to experience a lapse in care, Reiss said. Yet these patients often must switch doctors at a time when they, too, are least likely to be covered by health insurance, in part because of their higher rates of underemployment and unemployment.

Until recently, physicians may have handled one or two such individuals a year, and it was possible to work around the system, Reiss said.

“You didn’t need to think about a population-based approach to handling the problem. You could take an individual patient-based approach,” Reiss said.

To learn how patients move into adult medical care, UF researchers conducted 34 focus groups, involving 143 patients, families and health providers, to gather information about participants’ experiences with health-care transitions. Study participants also answered questions about which factors made transitions successful or unsuccessful.

Researchers said many patients reported differences in care, such as difficulty in receiving adequate pain relief after making the transition into adult practice. Others were concerned about quality and comprehensiveness of care; some were the first patient their adult physician had ever seen with their particular health condition.

Researchers also found that a mutual trust forms among pediatric patients, their families and their health-care providers. Saying goodbye to the doctor who has handled their care since they were diagnosed can be difficult for patients, and that bond can present a barrier to effectively transitioning into adult-oriented medicine. Patients and families surveyed said they perceived pediatric staff to be more available for questions and emotional support.

Patients and families whose outlook focused on the future were more likely to experience a smooth transition, the study showed. Gibson, who conducted the study’s data analysis, said it was necessary for patients and their families to look at the change as part of the developmental process.

“The people that we talked to who were most successful understood transition from the moment the child received the diagnosis,” Gibson said. “Just like with a healthy child, you anticipate they are going to go to college or live independently in a community. There are things you do developmentally throughout their childhood to prepare them for that early on.”

UF researchers say the results suggest the medical community may need to create a more consumer-friendly medical system that would break down barriers to age-appropriate care, improve doctor-patient communication and incorporate a protocol for handling the transition. Internists and other adult practitioners, meanwhile, should talk to pediatricians about patients’ conditions and treatment strategies at the time they switch practices, Reiss said.

Elizabeth Tong, M.S., a clinical research nurse at the University of California, San Francisco’s division of pediatric cardiology and an associate clinical professor at UCSF’s School of Nursing, said Reiss’s research spotlights the need for health professionals to tailor specific interventions to this population.

“Young adults with chronic health conditions is an emerging and growing group of patients, and health professionals as a group are still relatively inexperienced in understanding what are the medical, social and financial needs of young adults,” Tong said. “Qualitative analysis work by Dr. Reiss and others allows us to directly hear from patients what their needs are and how the current system is or is not meeting their needs. This input from patients provides the necessary groundwork for developing appropriate and meaningful interventions and care.”

Educating patients, their families and medical personnel is necessary to address the needs of this growing population of special needs patients, Reiss said.

“It may require the medical system to reorient itself toward the needs of patient, rather than the provider,” he said, “to the benefit of everyone.”

Denise Trunk | EurekAlert!
Further information:
http://www.ufl.edu

More articles from Social Sciences:

nachricht Fixating on faces
26.01.2017 | California Institute of Technology

nachricht Internet use in class tied to lower test scores
16.12.2016 | Michigan State University

All articles from Social Sciences >>>

The most recent press releases about innovation >>>

Die letzten 5 Focus-News des innovations-reports im Überblick:

Im Focus: Making lightweight construction suitable for series production

More and more automobile companies are focusing on body parts made of carbon fiber reinforced plastics (CFRP). However, manufacturing and repair costs must be further reduced in order to make CFRP more economical in use. Together with the Volkswagen AG and five other partners in the project HolQueSt 3D, the Laser Zentrum Hannover e.V. (LZH) has developed laser processes for the automatic trimming, drilling and repair of three-dimensional components.

Automated manufacturing processes are the basis for ultimately establishing the series production of CFRP components. In the project HolQueSt 3D, the LZH has...

Im Focus: Wonder material? Novel nanotube structure strengthens thin films for flexible electronics

Reflecting the structure of composites found in nature and the ancient world, researchers at the University of Illinois at Urbana-Champaign have synthesized thin carbon nanotube (CNT) textiles that exhibit both high electrical conductivity and a level of toughness that is about fifty times higher than copper films, currently used in electronics.

"The structural robustness of thin metal films has significant importance for the reliable operation of smart skin and flexible electronics including...

Im Focus: Deep inside Galaxy M87

The nearby, giant radio galaxy M87 hosts a supermassive black hole (BH) and is well-known for its bright jet dominating the spectrum over ten orders of magnitude in frequency. Due to its proximity, jet prominence, and the large black hole mass, M87 is the best laboratory for investigating the formation, acceleration, and collimation of relativistic jets. A research team led by Silke Britzen from the Max Planck Institute for Radio Astronomy in Bonn, Germany, has found strong indication for turbulent processes connecting the accretion disk and the jet of that galaxy providing insights into the longstanding problem of the origin of astrophysical jets.

Supermassive black holes form some of the most enigmatic phenomena in astrophysics. Their enormous energy output is supposed to be generated by the...

Im Focus: A Quantum Low Pass for Photons

Physicists in Garching observe novel quantum effect that limits the number of emitted photons.

The probability to find a certain number of photons inside a laser pulse usually corresponds to a classical distribution of independent events, the so-called...

Im Focus: Microprocessors based on a layer of just three atoms

Microprocessors based on atomically thin materials hold the promise of the evolution of traditional processors as well as new applications in the field of flexible electronics. Now, a TU Wien research team led by Thomas Müller has made a breakthrough in this field as part of an ongoing research project.

Two-dimensional materials, or 2D materials for short, are extremely versatile, although – or often more precisely because – they are made up of just one or a...

All Focus news of the innovation-report >>>

Anzeige

Anzeige

Event News

Fighting drug resistant tuberculosis – InfectoGnostics meets MYCO-NET² partners in Peru

28.04.2017 | Event News

Expert meeting “Health Business Connect” will connect international medical technology companies

20.04.2017 | Event News

Wenn der Computer das Gehirn austrickst

18.04.2017 | Event News

 
Latest News

Wireless power can drive tiny electronic devices in the GI tract

28.04.2017 | Medical Engineering

Ice cave in Transylvania yields window into region's past

28.04.2017 | Earth Sciences

Nose2Brain – Better Therapy for Multiple Sclerosis

28.04.2017 | Life Sciences

VideoLinks
B2B-VideoLinks
More VideoLinks >>>