The New Frontier: Improving Safety of Outpatient Care At Home

Lacey Martin on a whale watch.

After Lacey Martin’s leukemia didn’t respond to initial rounds of chemotherapy and after she spent 10 weeks hospitalized for a stem cell transplant, the 11-year-old New Hampshire girl went home March 2 with an external line for medications that her mother would have to flush and clean twice a day. Lacey’s immune system and infection-fighting ability were so weakened from her treatment that she was under isolation precautions for six months after she left the hospital. Any bloodstream infection contracted through the line, which exited her chest, would be serious and potentially life-threatening.

Caring for a child’s central line at home is, to say the least, a daunting responsibility.

“It’s extremely scary,” says Crystal Martin, Lacey’s mother. “It is terrifying knowing your child is so susceptible to bacteria and infection and you’re doing it in the house, with kids running around and the dog. I needed to know how to do it right, and I needed to know I could do it.”

This is the frontier of efforts to improve the quality of care. With more and more complex tasks moving from the hospital ward to the home, improving inpatient safety and quality of care is only the first step. After collaborating with other pediatric oncology programs to successfully reduce inpatient central-line-associated bloodstream infections (CLABSIs) Dana-Farber/Boston Children’s Cancer and Blood Disorders Center has now launched an initiative to reduce outpatient CLABSIs.

The Martins are among the first families to participate.

Although nurses have long taught parents line care before their child was discharged, the new initiative standardizes and expands the training and support. Nurses begin training parents a week or 10 days before discharge, with the expectation that the parent, after multiple practice sessions, will be able to perform the line care unprompted before the child goes home. On the first visit to the outpatient clinic, parents demonstrate the line care they have now been executing at home. Other components of the initiative include training visiting nurse agencies and a series of videos  — in English, Spanish and Arabic – that parents can watch to refresh and reinforce what they have learned.  Grant funding supports the additional nursing and other staff needed to implement the initiative.

“I knew I had to have it down before I left the hospital,” Martin recalls. “They made that clear, but they didn’t make me feel rushed. They were really good about answering questions but not being so harsh it made me nervous. I was comfortable by the time I left.”

A few statistics underscore the stakes.

Some pediatric cancer patients and almost all stem cell transplant patients go home with an external line — tunneled external catheter lines inserted in the chest or external peripherally inserted central catheters (PICC lines) inserted in the upper arm. Other children receive their medication through ports, which are fully implanted lines cared for by nurses. In Dana-Farber/Boston Children’s outpatient clinic, children with external lines account for one-quarter of its so-called line days and three-quarters of its outpatient CLABSIs, the center has found.

Lacey in 2016, on her first day of school.
Lacey in 2016, on her first day of school.

“This issue has resonance beyond the pediatric stem cell transplant and oncology patient population,” says Amy Billett, MD, director of safety and quality at Dana-Farber/Boston Children’s. “What we learn about preventing outpatient bloodstream infections in these patients could have broad relevance.”

The median charges for each CLABSI that resulted in hospitalization total $37,000 for a six-day hospital stay, according to a study published recently in Pediatric Blood & Cancer. Researchers retrospectively analyzed data on outpatient bloodstream infections at Dana-Farber/Boston Children’s that occurred between January 1, 2012, and December 31, 2013, and resulted in hospitalization. They analyzed 74 bloodstream infections in 61 patients, of which 69 percent were classified as CLABSIs. In 43 percent of the cases, the patient’s central line had to be surgically removed, and in 15 percent of cases, the child was transferred to the intensive care unit. Four patients died during hospitalization, with three of the four deaths associated with the infections.

“Behind these metrics are real and serious risks to patients’ health,” says Chris Wong, MD, the paper’s lead author and leader of the CLABSI prevention initiative. “The bottom line is that the dollar cost and lengthy hospital stays signal complications that could become life-threatening or delay treatment of the children’s cancer. Reducing these infections is important both for cost containment and quality of care.”

All parents or other home caregivers are expected to clean and flush their child’s external line. Some parents, including Crystal Martin, also change the cap that covers the line and the bandage at the line’s entry point.

Martin usually performed these tasks in her living room, with Lacey lying on the couch. Martin carefully washed her hands, disinfected the coffee table that served as the clean surface on which she placed a new sterile pad and, finally, the equipment she needed. Anna the dog, a boxer, and Kitten Mow Mows the cat were locked in another room, and Lacey’s two older brothers were not in the living room, either.

“At first I was a little nervous and didn’t want my mother to do it, but I figured the nurses couldn’t come every day to flush the line and do a bandage change,” Lacey says. “Once my mother had done it a couple of times, I felt better and better. She never made a mistake on me.”

Lacey returned to school August 30. She is in sixth grade.

Learn more about central line care at Dana-Farber/Boston Children’s.