Patients Report Satisfaction, Concerns With Opioids

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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People with cystic fibrosis (CF) who use opioids to manage pain commonly report being satisfied with the treatment, but also have concerns about the potential for addiction and stigmatization, according to the results of a recent patient survey.

The findings highlight “the need for guideline-driven practice standards, including the role of opioid medications for chronic pain management in CF,” according to the researchers.

The results were published in the Journal of Cystic Fibrosis, in the study “Satisfaction and effectiveness of opioid pain management among adults with cystic fibrosis: A mixed methods study.”

Pain is a common symptom of CF, estimated to affect nearly half of all adolescents and more than three-quarters of adults living with the disease. However, there are not well-evidenced clinical guidelines for pain management in this patient population.

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Opioids can be useful in the management of pain, but these medicines also carry a risk of addiction and other adverse side effects. The effectiveness of opioids for controlling CF-related pain has not been studied thoroughly.

Now, a team of researchers in the U.S. has reported findings from a survey of 274 people with CF who were asked qualitative and quantitative questions about their experiences with pain and pain management. Specifically, the researchers focused on 48 survey respondents who reported using opioids to manage their pain.

The median age of this subgroup was 36 years (range 18–72), and most were female (85%), white (92%), and had completed at least some college (81%). More than half of the respondents (52%) reported being unable to work or go to school as a result of health problems.

Most of the participants (70%) said they believed their pain was related directly to CF. The most common pain locations included the chest, joints, head, sinus, and abdomen. The majority of respondents said their pain interfered with their daily life and affected their mood.

The most commonly used opioids among the patients analyzed were tramadol (by 21 patients, 43%), oxycodone (43%), and hydrocodone (29%). Less than 5% of respondents used other medications, including methadone or fentanyl.

The proportion of respondents who reported being “satisfied” or “very satisfied” with opioid treatment was 75% for oxycodone, 61% for hydrocodone, and 43% for tramadol.

“Satisfaction with and effectiveness of pain management plans was mostly positive,” the researchers wrote.

In analyzing open-ended responses from the survey, the researchers noted several pertinent themes. For example, patients often reported using opioids as a “last resort” to control pain, and patients frequently expressed fears related to tolerance or addiction.

“I do not take this (tramadol) all the time, I only take this when the pain is debilitating and makes me cry or I cannot move from the stiffness of my joints causing me severe agony. I do not want to become addicted,” said a 29-year-old female respondent.

Side effects of opioids were another common concern. One 49-year-old participant said that “oxycodone often works but it effects my GI [digestive] system negatively,” while a 35-year-old respondent said that opioid treatment “takes away my ability to participate in life because it makes [me] sleepy or loopy.”

Besides opioids, many participants reported using other strategies, such as exercise therapy or acupuncture. However, in many cases, patients ran into barriers preventing them from accessing pain-related treatments. For instance, some over-the-counter pain medicines are not safe for use in people with liver or kidney damage. Cost and time also were barriers for many respondents.

“The main disadvantage to [physical therapy] are the extremely high cost. … one session costs a lot and to get the relief I need I would need to go 2–3 times per week. There is no way I could afford that,” said a 28-year-old man.

Patients often reported difficulty in having frank and productive conversations about pain management with their healthcare teams, from worries about stigmatization to having their experiences dismissed.

“It’s a constant thing I live with, and it feels like it’s expected with having CF and therefore not seen as an urgent concern. I’ve had a doctor tell me, ‘it’s just a part of the disease progression,’ and I don’t want to accept that. There should be more done to address this in every visit, or refer me to a pain clinic to work on it,” said one participant.

“We are scared to tell the doctors we’re in pain and need to do something about it because of the fear of being labeled a pill seeker. So, it becomes a very bottled-up mess that I truly believe is under reported and definitely under treated. Which is a major shame because when properly relieved of even just some of the pain makes life so much more enjoyable,” said another.

Overall, “participants reported high levels of satisfaction and effectiveness with their opioid pain management plans. However, qualitative themes emerged regarding fears of addiction, experiences of feeling stigmatized by the healthcare system and ineffectiveness and inefficiency of alternative therapies for adequate pain relief,” the team concluded.

The researchers noted this study was limited by its small and relatively homogenous sample size. They called for further research to develop better pain-management strategies for CF, and to determine the best place for opioids in CF pain management.

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