Kids with chronic disease benefit from involvement in care decisions

May 1, 2011

Every year, some 500,000 children turn 18 with serious chronic illnesses including congenital heart disease, cystic fibrosis, renal disease, spina bifida and sickle-cell anemia.

It is a great testament to medical advances that these children survive childhood with diseases that felled kids in the past. But it is also a challenge. Reports show many patients and their adult health care providers are ill-prepared for the adult health system. Some young patients have been sheltered, and they are not aware of potential health problems that accompany their illnesses. Others cannot name the drugs they have received throughout childhood. And some practitioners who treat adults acknowledge they don't fully understand how to assess and treat patients with pediatric onset illnesses.

"We are not planning for this transition," said Patricia Beach, a clinical nurse specialist and patient navigator at Mercy Cancer Center in Toledo, Ohio. "We see that patients don't always get the same attention or level of care coordination that they are used to. There is a lot of work to do out there."

Beach and colleague Beth White say the core tenets of palliative care can serve as the bridge between the pediatric and adult health care systems. They urge caregivers to focus on family education, communication and symptom management as well as standard curative care. Beach and White created an online course that explores palliative care across the life span. It is offered through Catholic Health Partners and Mercy College of Northwest Ohio.

"We do understand that there are developmental differences between adults and children, but there are a lot of overlapping concepts," said White, a pediatric clinical nurse specialist and regional quality improvement coordinator at Mercy Children's Hospital in Toledo. "There are people who love us who we identify as our family no matter what our age. Another similarity is communication. A family needs information that is clear and readily given and respectful. And spirituality — that whole issue of why we are here and what do illness and suffering mean — matters whether the patient is 3 years old or 60 years old."

Patient in training
White and Beach recommend the transition period from pediatric to adult care start in early adolescence. That requires the child to take a bigger role in his or her treatment.

"One of the major reasons we emphasize frequent, clear communication all along the way is so that (young patients) understand their condition, how it is treated, what the plan is and who they should go to to ask questions," said White. "It's important early on that there is a conscious effort to draw them into a transition with their health care team so there is not that sense that you are dropped off the earth. The privacy laws prohibit parents from making decisions for the child after the 18th birthday, so consistency and clear communication really matters."

"That means that the decisions have not been ones that the child has fought against along the way," Beach noted. "These important decisions have to be made in line with what the child values."

Beach said families frequently worry that patients will receive less care as adults, and for good reason.

"Pediatric caregivers have been working with these children literally since the day they were born," said Beach. "It is hard to end that relationship, but the pediatric knowledge base is so different from an adult's. It's not just about the disease but all of the shots and screenings are different."

Still, these patients have particular needs not all doctors fully appreciate. For instance, a young woman who underwent cancer treatments as a child may require mammograms before age 40. Or a cystic fibrosis patient may be at increased risk for diabetes.

White said there are few good transition models, but approaches used in the treatment of cystic fibrosis come close with pediatric and adult centers that feature interdisciplinary teams of physicians, nurses, dieticians, endocrinologists and educators who understand the spectrum of issues that may accompany the condition.

Beach said this holistic approach respects the patient's ability to make choices for himself or herself. It also reinforces the clinicians' appreciation for the patients' priorities and wishes.

A cancer specialist, Beach uses good cancer care as an example of holistic care planning.

"You are looking at what kind of chemotherapy do they need, but you are also looking at what do the other siblings think about the hair loss?" started Beach. "What do they think about the attention the sick child is getting? How can we help this child continue to go to school? Are they having some cognitive issues? Or nutritional issues? Are we looking at support groups that are age appropriate? What about spiritual care?

"It's hard to think which piece is cancer care and which is palliative care — a good program blends all of those," Beach said.


Copyright © 2011 by the Catholic Health Association of the United States
For reprint permission, contact Betty Crosby or call (314) 253-3477.

Copyright © 2011 by the Catholic Health Association of the United States

For reprint permission, contact Betty Crosby or call (314) 253-3490.