NACFC 2023: Tool seeks to educate patients about lung transplants

'Take on Transplant' may aid communities with low access to procedure

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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A pair of lungs are shown struggling to breathe.

Researchers hope a new tool that can provide disease-specific education and resources about a lung transplant for people with cystic fibrosis (CF) will be able to make inroads among patients who’ve historically had poor access to the procedure.

The development of the tool, called Take on Transplant, was introduced this week by Kathleen Ramos, MD, a professor at the University of Washington, at the 2023 North American Cystic Fibrosis Conference (NACFC) in Phoenix.

The tool consists of four components: a survey to help patients assess if a transplant is suitable, based on their clinical status; a resource library with CF-specific information about lung transplants; common questions posed by patients and answers by clinical experts; and narratives of patients who’ve had the procedure. The stories were designed to increase the representation of people from underrepresented backgrounds, said Ramos, who noted it demonstrated promising results in a pilot study, even among those who’ve historically had poor access to a transplant.

Lung disease is one of the main symptoms of CF and in some situations a transplant can improve a patient’s survival and quality of life.

The procedure is a major one, however, and talking about it can be difficult for patients. New guidelines introduced by the CF Foundation seek to facilitate these conversations between clinicians and patients to help improve outcomes.

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Talking about lung transplants early and often

The guidelines showcase the importance of discussing a transplant regularly, before one may be needed, so patients have time to process the possibility and it isn’t being brought up for the first time during an emergency. The guidelines suggest discussing a transplant at least once a year if a measure of lung function called FEV1 is less than 50% of predicted.

Having these conversations can aid in setting up long-term plans to address barriers, such as nutritional issues and financial constraints, to getting a transplant, Ramos said.

Referrals should also be given as early as possible. An early referral would minimize the need for an emergency transplant or the risk of a patient getting too sick to benefit from one, said Ramos, who noted studies show patients are interested in talking about transplants.

Patients do report misgivings or misconceptions about lung transplants, however. Some worry they are too old for one or have outdated information about their eligibility or the procedure’s likely outcomes.

“It’s critical for our community to know that lung transplant program practices evolve over time … so some things that may have stood in the way 10 years ago may not now,” said Ramos, who noted data show in 2022 most lung transplant recipients were older than 50, and nearly half were older than 65. She said outcomes continue to improve as medical technology evolves.

‘Inequities’ to transplant access

Demographic and economic factors also affect a patient’s access to a transplant.

“People with CF and lower socioeconomic status, Hispanic ethnicity, and/or minoritized race have lower rates of referral, listing, and lung transplant, and higher rates of death without lung transplant,” Ramos said, noting this is “not a new phenomenon” and is part of broader, well-documented inequities in medical care.

Also, the benefits from a new class of medications called CFTR modulators that have resulted in fewer lung transplants have mainly been seen by “white, non-Hispanic people with CF,” a demographic that’s historically had better access to transplants. These therapies work to improve the function of the faulty CFTR protein in people with certain CF-causing mutations.

These differences are “at least in part due to differential qualification for highly effective modulators in the racially and ethnically minoritized people with CF,” since some of the most common mutations that benefit from modulator treatments are more common in white populations, Ramos said, adding the differences are “also related to systemic biases that disadvantage people of color.”

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Testing Take on Transplant

To test Take on Transplant, the researchers enrolled 50 people with CF, ages 22-66, with a FEV1 lower than 50% in a study that taught them how to use the tool or an older one and then tested them on how prepared they were for a transplant. The patients who used Take on Transplant scored significantly better.

The study included a high number of patients from racial or ethnic minorities and other historically disadvantaged groups. Nearly two-thirds of the participants were considered to be from “communities of concern,” and these patients showed benefits from Take on Transplant that were similar to those from other demographics, despite not scoring as well on tests of transplant knowledge and medical literacy before using it.

Interviews with some of the participants showed interest in learning about a transplant, which was noteworthy since most were taking CFTR modulators, Ramos noted.

Patients from communities of concern generally had similar attitudes to those of other demographics, but financial concerns related to a transplant were brought up more often.

Take on Transplant isn’t available to the public yet, but the researchers hope it will help equip patients talk to clinicians about lung transplants, especially those who’ve historically had poorer access to them.

Ramos also said more needs to be done to understand the role of lung transplant education for children who start on the CFTR modulator Trikafta in early infancy, as well as to tailor interventions for patients with the greatest need.

“Interventions that are aimed at improving preparedness for lung transplant should be adapted for people at the greatest risk for needing transplant and/or at risk of missing their opportunity for transplant,” she said.