It is well-known that financial toxicity is a huge burden on patients with cancer, with up to half of patients in the United States experiencing it to some degree, according to Lauren M. Hamel, PhD.
The Disco App, born from “DIScussions of COst” and designed by Dr Hamel and her team, is a novel point-of-care communication intervention aimed at improving discussions of cost between patients and their oncologists, while alleviating financial toxicity in the process.
“As the cost of cancer care escalates, and the burden of that cost increasingly shifts to the patient, we see patients suffering more and more from financial toxicity,” said Dr Hamel, associate professor in the Department of Oncology at Wayne State University School of Medicine, and co-program leader of Karmanos Cancer Institute’s Population Studies & Disparities Research Program in Detroit, MI.
Research has shown that across cancer types, a patient is—on average—responsible for about $16,000 annually for direct and indirect out-of-pocket expenses associated with cancer treatment. People with cancer are also more than 2.5 times more likely to file for bankruptcy compared with people without cancer. Aside from the financial impacts, the stress associated with financial toxicity can be absolutely detrimental to a person’s psychological well-being.
These costs also influence treatment adherence. And when financial toxicity begins to negatively influence patient adherence, it becomes a risk factor for early mortality.
“I think the uninitiated often assume that if a patient is insured, then surely financial toxicity is not a problem,” she pointed out at the 2022 AONN+ Midyear Conference in Austin, TX. “But that’s not the case. Insurance, whether public or private, does not protect against financial toxicity.”
Are There Any Solutions?
According to Dr Hamel, interventions can and should be implemented on the policy, pharmaceutical, and organizational levels, but she wanted to focus on the patient/provider level when developing the Disco App.
“When the patient and the physician are discussing treatment and potential side effects, that’s where decisions get made and where healthcare gets transacted,” she said.
A major contributor to financial toxicity is a patient’s lack of awareness of the costs they might incur and how to manage those costs. As a result, patients are far too often unprepared when these costs inevitably arise.
According to Dr Hamel, even though research shows that both patients and providers want to have discussions about the cost of treatment, these discussions are not occurring routinely.
Developing the Disco App
To respond to this unmet need, she and her team looked to a well-established and effective communication intervention called a question prompt list (QPL) when designing the Disco App.
According to Dr Hamel, QPLs have been shown to influence the amount and type of information physicians provide, what topics are discussed, and what treatment decisions are made; they can also influence longer-term physical and psychosocial outcomes for patients.
“They’re very simple tools,” she said. “They’re easy to implement, and they’ve been effective in improving how active patients are in their interactions with their oncologists and other providers.”
The traditional QPL has been static and paper-based, so to enhance on it, they made their intervention app-based and tailorable to each individual patient.
The Disco App in Detail
Before they go through the question prompt, patients can first access a brief educational video to learn about basic issues they might encounter around treatment costs. The video then leads patients into a tailorable QPL, beginning with basic information about themselves.
Patients complete a short demographic survey that asks them:
- What type of cancer they’ve been diagnosed with
- If anyone depends on them regularly (ie, children)
- If they have anyone they can depend on when they’re sick
- How much of their treatment is covered by insurance
- Their means of transportation (and how reliable that is)
- How long it takes them to get to their cancer center
- Their employment status
- Their income level
- Their economic situation (and if they anticipate that changing based on their diagnosis)
The last thing that the patient sees is a list of questions about any financial concerns they would like to discuss further. “We try to let the patients narrow down what it is that they want to discuss,” she noted.
The app creates a tailored list of questions/concerns for the patient, and they select which ones they want to keep to bring up to their doctor (or any other provider) about treatment costs in the future. The list is also easily connected to a printer if patients want a hard copy to bring with them to their oncology appointments.
The Pilot Study
The Disco App was tested in a pilot study of 32 patients in 2 outpatient clinics. Patients involved in the study were meeting with their oncologists to discuss treatment (85% had breast cancer) and used the Disco App prior to their treatment discussion. They also completed self-report measures before and after the treatment discussion, and allowed their treatment discussion with their oncologist to be video-recorded.
The researchers monitored and assessed:
- How long patients took to use the Disco App
- How many questions patients selected from the Disco App
- If any patients needed assistance using the Disco App
- If any patients refused to be video-recorded and/or left the study early
Patients completed measures of their perceptions of the Disco App (1 = strongly disagree to 5 = strongly agree):
- The questions in the Disco App were easy to understand
- The Disco App made it easier to ask my doctor cost-related questions
- Some of the questions in the Disco App were useful to me as I was talking with my doctor
- Some of the questions in the Disco App made me uncomfortable
“In the literature, one of the concerns on this topic is that the issue of cost doesn’t come up because patients and/or physicians are uncomfortable discussing it,” she said. “So we wanted to be really precise and see what patients’ reactions were.”
Finally, patients completed pre- and postinteraction measures of financial toxicity– and cost discussion–related outcomes.
Encouraging Pilot Data
Most patients (84%) reported needing 15 minutes or less to use the app, and all patients finished using the Disco App without assistance during the time they were in the exam room waiting to see their oncologist.
“It was a self-contained intervention; they didn’t need help from research staff or clinic staff,” she said. “We wanted this to be effective and sleek—and I also want my clinician colleagues to continue to like me—so we were very happy to hear that it didn’t extend exam room time or interaction time.”
According to Dr Hamel, these results were incredibly encouraging. Based on the data they collected, the app demonstrated feasibility for implementation in a clinic and acceptability to the patients using it. Simply using the app and having a subsequent discussion with an oncologist led to significantly improved patient self-efficacy for managing treatment costs, significantly improved self-efficacy for interacting with physicians, and subtle improvements in patient management of cost-related distress, she reported. In addition, of the patients who used the app, 100% had a treatment cost discussion with their doctor.
Although this was a small pilot study, Dr Hamel maintains that it was more of a proof-of-concept study, adding that some significant changes were seen in the outcomes they were hoping to change.
The Disco App’s effectiveness in the short- and long-term is now being tested in a larger, randomized controlled trial.
“To me, the Disco App is begging to be part of a multilevel intervention, because right now it’s only patient-facing,” she said. “I think it’s really on us now to start building up that provider side, and the oncologist is only one member of that team.”