Assessing Treatment Burden, Complexity May Improve Therapy Adherence

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by Patricia Inacio PhD |

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Routine evaluations of how cystic fibrosis (CF) patients and their families are coping with the burden of therapeutic regimens — usually daily therapies that are complex and time-consuming — are an important tool to enhance treatment adherence and create a strong working relationship between patient and care provider, a study reports.

The study, “Assessment of treatment burden and complexity in cystic fibrosis: A quality improvement project,” was conducted by researchers at Cincinnati Children’s Hospital Medical Center, in Ohio, and published in the journal Pediatric Pulmonology.

While the number of therapies available to CF patients continues to grow, the impact of the different treatment regimens remains poorly understood. Such regimens often are complex, requiring several hours of the day, and include preparing and taking medications, as well as proper sanitation of equipment such as nebulizers.

“Understanding the perceived burden of treatment regimens is necessary as daily strain from complex regimens may affect all aspects of life and reduce adherence,” the scientists wrote.

To better understand the burden of care for CF patients and their families, and to identify potential interventions to reduce it, the investigators conducted a quality improvement (QI) project at the Pediatric CF Center of Cincinnati Children’s. All patients, ages 6 to 24, were seen in an outpatient setting.

The QI team was composed of a QI specialist, an advanced practice nurse, three registered nurses, a pulmonologist, and two parent partners.

The aim of the project was to increase completed assessments of perceived burden and partnership from 0% to 80% within six months.

To assess quality of life and treatment burden, the team used the Cystic Fibrosis Questionnaire-Revised (CFQ-R). With a score ranging from 0 to 100, higher scores indicate better quality of life and lower burden.

They also used the Treatment Complexity Score system, ranging from 0 to 72, in which higher scores reflect greater complexity. A composite score was calculated using electronic data on the number of CF medications or treatments, frequency of dosing, and time to complete treatments.

Partnerships between patients and/or families and the CF care team were evaluated using three survey questions. These focused on how often patients and the CF care team had open discussions, and how the care team looked for solutions to patients’ problems. Each question was rated on a five-point scale, in which a score of one meant never and five always.

In total, 110 CF patients — 61% of those eligible — with a mean age of 13 completed the burden and partnership survey within the predefined six months. In addition, 62 caregivers completed the survey within the same time parameters.

The results showed that caregivers reported lower burden and higher quality of life than CF patients. This was reflected in a mean score of 74 (range 22.2 to 100) for caregivers versus 66.5 (range 16.7-100) for patients.

The mean treatment complexity score was 17.2 (range 6 to 34). Overall, patients and caregivers agreed on the degree of burden a treatment regimen posed.

Treatment complexity and burden worsened significantly as the patients aged. Furthermore, patients reported that their treatment burden worsened as the therapy regimens became more complex.

Poorer lung function was significantly correlated with worse patient-reported burden and higher treatment complexity.

In total, the researchers collected 105 partnership assessments, with families reporting high partnerships scores — an average of 4.7 to 4.8 — and care providers reporting frequent use of partnership tools. Specifically, partnership tools were used in 77% of the cases, according to the provider.

The most common interventions included helping families prioritize treatments if they had difficulty completing daily regimens, and involving other team members to enable specialized support.

As treatment burden increased, care providers looked for interventions to reduce burden, which included discussions concerning combined treatments to save daily care time and simplification of the treatment regimens.

Overall, this study suggests that routine assessments of “treatment complexity, burden and partnerships among providers and individuals with CF are possible in the outpatient setting,” the researchers wrote.

“These assessments offer valuable insights into the patient and family perspective that may have important implications for adherence, relationship building, and provider understanding of quality of life for individuals living with CF,” they concluded.


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