Patients Satisfied With Treatment, Struggle With Life Quality: US Survey

Marta Figueiredo, PhD avatar

by Marta Figueiredo, PhD |

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Nearly half of the people with pulmonary fibrosis (PF) responding to a survey were dissatisfied with their quality of life, while more than a third felt pessimist about their future. The U.S.-based survey was conducted by Pulmonary Fibrosis News.

Nevertheless, most respondents said they were satisfied with their health insurance provider and treatment plan, and nearly all were not considering switching medications — with Ofev (nintedanib) being the most commonly used.

Overall, these findings highlight the severity of PF despite adequate medical care, and underscore that more should be done to improve life quality and address the needs of PF patients.

The online survey was conducted in collaboration with the Business Intelligence arm of BioNews, which publishes this website.

“BioNews is dedicated to improving the lives of patients living with disease,” Jacob Harney, PhD, operations manager for Business Intelligence, said in a statement to Pulmonary Fibrosis News.

“We continue to research the impacts of disease(s) on quality of life in the hopes that better understanding results in better treatments and therapies being available in the future,” he said.

Conducted from Feb. 25 through May 16, 2021, the survey sought to gain a greater understanding of the PF community, focusing on disease management, treatment plans and side effects, insurance, and patient quality of life.

Who answered the survey?

A total of 335 U.S. residents responded to the survey, most of whom — 303, or 90.4% — were people living with PF. The remainder were family members or friends of PF patients (9.6%).

Subsequent analyses focused on patients only. This group had a median age of 69.5 based on 212 responses, and lived with a PF diagnosis for a mean of four years, according to 274 responses.

A total of 295 patients answered survey questions about their gender, race and ethnicity, and educational background.

More than half (56.3%) identified as male and 43.7% as female. Most respondents (90.2%) were white, while 3.4% identified as Latino/Hispanic, and 2.4% preferred not to disclose their race/ethnicity. All other races and ethnicities collectively accounted for 4% of respondents.

Most held either a bachelor’s degree (31.2%) or a graduate degree (27.8%; master’s, doctorate, law, or medical degree). Another 19% had completed an associate’s or trade school degree, while 16.6% had a high school diploma or GED. The remaining 5.4% reported another education level.

Of the 294 patients who reported their annual income, 10.9% earned up to $30,000 per year, while 34.7% made more than $75,000 per year. More than 2 in 10 (22.4%) preferred not to disclose their income.

The most common PF symptom — based on 287 patients who answered — was shortness of breath (80.5%), followed by diminished exercise tolerance (74.9%), fatigue (71.4%), and dry cough (56.4%).

Shortness of breath also was most commonly reported (36.9%) as having the greatest impact on daily activities, followed by fatigue (20.1%) and lower exercise tolerance (13.6%), according to 279 responses.

Based on 286 responses, most patients had not undergone radiation therapy (90.6%) or been exposed to asbestos, mold, silica, or dust (66.4%).

For insurance coverage, most patients reported having Medicare (84.3%) or private health insurance (41.2%), while 7.4% were insured through another government program and 16.7% used other types of health insurance. Five of the 294 patients who answered this question preferred not to disclose their insurance, while two said they had no coverage.

How were patients being cared for?

Nearly all the PF patients surveyed reported seeing a pulmonologist (278 of 287, or 96.9%), and more than three quarters were seeing a general or primary care doctor (77.4%). Others reported being seen by a cardiologist (39.4%), a thoracic surgeon (3.8%), and other healthcare professionals (19.5%).

More than three quarters of 270 patients responding (75.9%) were taking medications to treat PF, while 275 of 283 patients (97.2%) were on medications not related to the lung disease.

Ofev was the most commonly used disease-modifying therapy — that is, medications proven to help slow PF progression — taken by 50.2% of 203 respondents. This was followed by Esbriet (pirfenidone; 32%).

Some patients also reported using immunosuppressive therapies such as prednisone (15.3%), mycophenolate mofetil (brand names, CellCept and Myfortic; 9.9%), and azathioprine (brand names, Azasan and Imuran; 1%). Nearly 2 in 10 respondents (19.7%) said they were on other medications.

The most common side effects, as reported by 195 patients, were fatigue (64.6%), diarrhea (40%), gastroesophageal reflux disease (GERD; 32.8%), and reduced appetite (32.3%). Fatigue and diarrhea were also the most bothersome, based on 171 responses.

Among 113 patients who reported a main reason for having stopped a previous medication, side effects were the most common (45.1%), followed by a healthcare practitioner deeming it unnecessary (13.3%), and lack of effectiveness (10.6%). Other reasons were given by more than a quarter of responders (27.4%).

The most frequent side effects of prior treatments that 97 patients experienced included diarrhea (37.1%), fatigue (35%), nausea (21.6%), and loss of appetite (20.6%). These along with GERD were also considered the most bothersome, based on 84 responses.

More than half of the patients reported using oxygen therapy occasionally (27.9%) to always (31.7%), according to 287 responses, while most (84%) of 285 respondents said they were not undergoing pulmonary rehabilitation.

Six of 286 patients (2.1%) reported having undergone an organ transplant. Four of these were double lung transplants.

How did patients view their life quality and care?

Among the 295 patients who addressed a quality of life question, nearly half (45.4%) reported being unsatisfied. This included 29.8% of respondents who said they were “somewhat unsatisfied” with their life quality and 15.6% who were “very unsatisfied.”

Just more than 40% reported being “somewhat” (31.2%) to “very satisfied” (10.2%) with their quality of life, and 13.2% were “neutral.”

Nearly half of 293 respondents (45.4%) expressed optimism about the future: 35.5% were “somewhat optimistic” and 9.9% were “very optimistic.” Still, more than one-third held an opposite future view, with 25.6% saying they were “somewhat pessimistic” and 9.5% “very pessimistic.” Nearly 2 in 10 (19.5%) reported being “neutral.”

Despite some discontent with their life quality and future perspectives, fewer than 1 in 10 patients reported being “somewhat” (6.7%) to “extremely dissatisfied” (2.1%) with their treatment plan, based on 194 responses. Nearly two-thirds were “somewhat satisfied” (41.2%) or “extremely satisfied” (22.7%), while over one quarter were “neither satisfied nor dissatisfied” (27.3%).

In line with these treatment satisfaction rates, only 23 of 202 respondents (11.4%) were considering switching their current medications. The most common reasons for considering such a change were side effects and concerns about effectiveness.

Most patients (91.5%) also reported being satisfied with their health insurance provider: 62.9% of 283 patients were “extremely satisfied” and 28.6% were “somewhat satisfied.” By contrast, only four patients (1.4%) were “somewhat” (0.7%) to “extremely dissatisfied” (0.7%) with their insurance. The remaining 7.1% reported being “neither satisfied nor dissatisfied.”

A majority of respondents — 60% of the 233 patients — expressed an interest in taking part in clinical trials. Among this group, 34.3% said they were “somewhat likely” and 26.2% were “extremely likely” to participate. Only 14.6% reported being unlikely to enroll in a clinical trial, and about a quarter (24.9%) said they were “neither likely nor unlikely.”

Overall, survey results highlight generally high rates of satisfaction with care and health insurance among PF patients, but also indicate areas of substantial dissatisfaction where further care or support may be warranted.

“Most patients report that they are not considering a medication switch (88.6%), supporting a higher level of satisfaction (63.9%) versus dissatisfaction (8.8%) with their current treatment plan,” Harney said.

However, “the level of dissatisfaction with quality of life remains too high,” with more patients “being unsatisfied with their quality of life (45.4%) compared to those reporting satisfaction with their quality of life (41.4%),” he said.

“When more than 4 in 10 report dissatisfaction there are opportunities for improvement,” he added.

“As we look to further investment in better outcomes for patients with pulmonary fibrosis, medications should focus on the most bothersome side effects, which results from this study include fatigue (27.5%) [and] diarrhea (21.6%),” Harney concluded. 

“The potential for these improvements [may] provide patients with some optimism for the future.”

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