CF Children May Take Enzyme Therapies on Own at Atlanta Hospital

Joana Carvalho, PhD avatar

by Joana Carvalho, PhD |

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Hospitalized children and adolescents with cystic fibrosis (CF) who can take enzyme treatments for pancreatic insufficiency on their own, rather than waiting for them to be given by a nurse, are more likely to take these necessary medications at the proper time with less of a wait, a survey study found.

A self-management therapy approach like this was also favored by patients for increasing their sense of autonomy and improving their self-care, survey results showed. And patients and nurses expressed satisfaction with the approach.

Based on survey findings, a policy allowing some children to self-administer enzyme treatment at bedside is now in place in the pediatric CF unit of the Children’s Healthcare of Atlanta.

Survey findings were described in the study, “Decreased Wait Time and Increased Satisfaction With Bedside Pancreatic Enzyme Dosing for the Inpatient Adolescent With Cystic Fibrosis: A Quality Improvement Project Comparing Enzyme Self-Administration to Nurse Administration,” published in the Journal of Patient Experience.

Pancreatic insufficiency, due to a lack of pancreatic enzymes necessary to help digest food, is a common digestive symptom of CF driven by the buildup of thick mucus in the pancreas. It can lead to malnutrition, fat malabsorption, abdominal discomfort, and impaired growth.

Treatment for pancreatic insufficiency usually consists of taking pancreatic enzymes before each meal to ensure proper digestion and nutrient absorption.

But hospitalized CF patients often cease to be autonomous, and rely on healthcare professionals to be given their prescribed medications, including pancreatic enzymes.

With the goal of increasing patients’ autonomy, the 35-bed pediatric CF unit at the Atlanta hospital started to allow children and adolescents, ages 10 and older, to self-administered pancreatic enzymes at bedside. Select children under age 10, those viewed by their doctor as sufficiently mature and treatment adherent, were also allowed to included in this program.

In total, 11 children, ages 8–17, took part in this pilot program that ran from April to August 2015, as did 14 nurses who were in charge of their care.

A survey was conducted to assess time intervals during which medications were taken or given, and patient and nurse overall satisfaction with this self-management strategy compared with the conventional giving of medications by nurses.

Satisfaction was evaluated through two questionnaires — one for patients and one for nurses — each containing 11 questions. Those addressing levels of satisfaction had a five-point rating scale.

All 11 patients and 14 nurses completed the questionnaire.

Findings showed that patients waited longer to take pancreatic enzymes when they were given by nurses, rather than when they were self-administered.

More than half (57%) of the nurses surveyed gave medications to patients within a 5–10 minutes window, the survey reported. About a third (28%) took 10 to 30 minutes to complete the task.

In contrast, none of the surveyed patients waited longer than 10 minutes to self-administer the treatment. Nearly all — 82%, 9 children— reported taking their enzyme treatment within 5–10 minutes of eating, while the other two accessed their medication is less than five minutes. Nurses verified that medications were taken by counting those that remained in the child’s room after meals.

“Immediate access to prescribed pancreatic enzymes with bedside storage in a room safe increases patient autonomy and decreases wait time for prescribed enzymes, optimizing nutritional growth and healing for the patient,” the researchers wrote.

In terms of satisfaction, all patients and most of the nurses — 86%, 12 out of 14 — preferred self-administration of pancreatic enzymes to nurse administration of these treatments.

” Adolescents in particular want to be engaged in their care and have greater autonomy,” the study noted.

Overall, “the implementation of self-administered pancreatic enzymes at the bedside for patients with CF proved successful on a designated respiratory unit as evidenced by an increase in patient and nurse satisfaction and a decrease in maximum wait time for enzymes by those self-administering enzymes,” the team wrote.

“As a result, a new limited scope policy allowing patient-administered enzymes is now in place in the pediatric inpatient CF unit,” the researchers added.