Category 1: general approaches to treating and managing OIC
Balancing pain relief, function, and side effects
Clinician Perspectives
Nearly all of the clinicians interviewed brought up constipation as a potential significant side effect of opioid medications. Several clinicians discussed being particularly cognizant of special populations who might be at higher risk for constipation, including elderly individuals, hospitalized patients, people taking other medications known to cause constipation, and those with limited mobility and muscle function diagnosed with conditions such as Parkinson’s and Amyotrophic Lateral Sclerosis. Balancing pain relief, function, and side effects, including OIC, was an important decision that clinicians raised when thinking about prescribing opioid medications. Two providers voiced concerns that for certain populations, the constipation from opioid medications could be worse than the benefit of the narcotics. Dr. V, a neurologist, noted, “I’m just - my impression is that I’m more reluctant than many physicians to use opioids, just because I’m concerned about the adverse effects and also in the older people … All you’ve got to do is give them severe constipation, and you can have a problem that’s as bad as, what you, what you used the narcotic for in the first place.” However, in contrast, one internist emphasized that the opioids “allow [patients] to function. They may get some side effects, the constipation and those type of issues too and sedation, but for a lot of people, they need it function.”
Patient Perspectives
Some patients also expressed concerns about balancing pain relief, function, and side effects, and several providers described conversations where a patient expressed wanting to avoid side effects such as constipation, nausea, vomiting, and drowsiness. One pain specialist, Dr. X, explained that patients would often stop taking opioid medications due to dizziness and constipation: “They say, ‘I cannot deal with that. [I’m] too constipated and I have to do something else.’” One patient with several chronic pain conditions described his concerns about using pain medications and his strategy to mitigate these concerns, saying, “When I started to have some pain I said, ‘Gee. You know isn’t there something I can take without too many side effects that will give me some relief?’ But as it turns out, there wasn’t … You get the lecture when you’re prescribed and you hear about all the abuse and I’m not a pill taker so I’ve always under-taken the prescribed amount and I’ve been told that that’s not good for me either because I’m not getting any pain relief. But it’s a balance that I look for.” Another patient experiencing temporomandibular joint dysfunction commented on the dose-dependent nature of side effects such as OIC. She explained her side effect management strategy by saying, “If I’m in one of those phases where things aren’t so flared up and I’m taking less than, you know, even what my supply is, then I don’t really have constipation.”
Avoiding prescription medications for OIC
Clinician Perspectives
Six of 33 clinicians interviewed brought up the use of prescription medications specifically used to treat OIC. Some clinicians considered using prescription medications used to treat general chronic constipation or their patients with OIC. However, in all cases, they reserved the use of prescription medications for severe constipation. Clinicians who used the drugs noted that they had only used them in rare cases for very severe intractable constipation. One internist, Dr. Q, noted that he didn’t buy the “hype” around these medications: “if the side effect is specifically constipation, I mean, there’s a lot of things that we can do and obviously now there’s medication specific to opioid constipation, which I think is just marketing, honestly. And not to say that it’s not effective, but I rarely need to use it.”
Several clinicians, including pain specialists and primary care clinicians, expressed reluctance to add another prescription medication to treat adverse effects and attempted to use other strategies to manage side effects, particularly constipation. These strategies included tapering down the medication or changing the medication. One pain specialist, Dr. C, noted, “I hate prescribing a drug to treat a side effect of a drug. So, if somebody has like end-stage [severe] constipation, I’ll really try to find a different [pain] medication.” They also expressed concern about adding additional medications to the long list of drugs that their patients were already taking. Explained Dr. C, “Oh, my God. It’s like the number of drugs people are on is unbelievable. And you look at it and you go, ‘Why are you taking that?’ Well, that’s to treat the side effect. If they’re on three drugs the fourth drug is to treat the side effect of one of the other three.”
Cost and access to the medications was also an important issue with regards to prescribing drugs specifically used to treat OIC. Clinicians also noted that the prescription OIC medications were often not covered by insurance, making it challenging for them to prescribe these medications. One family practice clinician, Dr. H, who sees a large proportion of patients with chronic pain, explained: “I try to stay away from the, you know these expensive prescription drugs that have come out in the last five years for opiate induced constipation, I usually can avoid those with, hydration, fiber … They’re already, these people are also, tend to be on a lot of medication already so I’m not really looking to add something in. And in my experience, they’re not as effective as they make them seem, and they’re more expensive and they’re often not covered on their formulary and so it’s like a hassle all around.” Given the cost and access issues, clinicians explained that they preferred to recommend over-the-counter medications or lifestyle changes. Only one clinician, a primary care doctor, mentioned that patients specifically asked for an OIC medication by name, but said he often didn’t prescribe it because it was typically not covered by insurance.
Patient Perspectives
Patients also expressed issues with the prescription OIC medications. One patient with multiple chronic pain conditions noted that he tried one of the prescription OIC medications and it made him “feel really uneasy in my stomach.” After one week of trying the medication, he switched back to Milk of Magnesia, which he described as his “medicine of choice. And it causes less gas etc. and it seems to work as long as I stay on it every other day.” Patients even expressed concerns about the cost of over-the-counter OIC medications such as MiraLAX or fiber-rich dietary items such as figs and prune juice, demonstrating that cost is an important issue to patients as well. One patient noted that he preferred when medications were prescription as opposed to over-the-counter, as the insurance would pay part of the cost of the medication.
Category 2: patient-clinician communication around OIC
Self-efficacy regarding OIC management and discordance between patients and clinicians regarding information to treat OIC
Clinician Perspectives
Clinicians differed in their perceptions of whether patients were effectively managing OIC on their own. Several internists and family practice clinicians prophylactically prescribed or recommended stool softeners, laxatives, and lifestyle changes for their patients taking opioid medications. One internist, recognizing that patients are often too embarrassed to bring up constipation, noted that he will “have the discussion I just laid out, you know it’s tough for people to talk about their poop as it were, you know I mean what I’ll tell ‘em is things like, you know you don’t want to have to break up a log jam, you know so what you want to do is you want to get ahead of it, you want to be hydrated, and stool softeners.” Another clinician, a rheumatologist, worried that many of her patients were not aware that opioids can cause constipation and actively educated her patients on potential side effects when she prescribed narcotics. Constipation is “insidious because not everybody goes to the bathroom that has a bowel movement every day so they may not notice it for a few days and then – then it continues and then they think it’s because they didn’t eat something or whatever, so if you don’t educate the patients they don’t realize that the reason that they’re not having a bowel movement is because the amount of narcotics they’re taking.” One clinician noted that he specifically told his patients about all of the side effects because he didn’t want patients coming back to him and saying, “you know, you never told me,” so he spent a great deal of time explaining all of the potential adverse effects when he prescribed any medication, whether it be an antibiotic or a controlled substance. In contrast, other clinicians perceived that their patients were already aware of how to treat side effects, particularly constipation. One pain specialist perceived that most of his patients made dietary changes or increased fluid intake, explaining, “Most of the patients, for constipation they, they know how to do it. They drink more water, [are] more active, and eat more veggies, fiber.”
Patient Perspectives
While many clinicians mentioned that they discussed OIC, some patients expressed that they didn’t receive enough information to manage the condition. One patient, a woman in her early 50’s with chronic jaw pain, discussed how “no one gave me a lecture on constipation. You know, they’ll say well, you know, you’ll have to take a laxative; you should take some laxatives, you know. But there wasn’t a prescribed laxative or this is better for you or not better for you.” She described how she wished her clinicians had brought up alternatives to treat constipation, including diet and lifestyle factors. Another patient mentioned that her pain specialist never brought up constipation and she experienced such severe constipation that she had to go to the emergency department. During her ED visit, she finally learned about stool softeners and stimulant laxatives.
Clinician perceptions of the role of managing OIC
Clinician Perspectives
The question of who should treat OIC, particularly severe constipation, came up several times in the interviews, with clinicians of different specialties often looking to other clinicians to manage the condition. Several primary care providers noted that prescribing medications specific to treat OIC fell into the scope of practice of other specialties – anesthesiologists, palliative care experts, gastroenterologists – given that they see more severe pain and gastrointestinal cases. Several seasoned primary care clinicians acknowledged knowing little about the prescription medications and in some cases had never heard of the newer OIC medications. “I would leave that to the GI,” explained Dr. W, a family care practitioner who had been practicing for 11 years. Dr. K, a private practice internist noted that the medications “would probably be in the purview of people who manage cancer patients.”
On the other hand, several specialists in rheumatology and dentistry noted that while they gave some general advice, managing severe constipation fell into the realm of the primary care physician. If the over-the-counter medications and the lifestyle changes don’t work, one clinician said, “I mean, I’m not a constipation expert, but if those type of things don’t work, then I’d say, you know what, see your physician, internist and see if they have some other recommendations.” Another clinician, a rheumatologist, noted that she ensures that patients have a good primary care clinician who can address more severe issues. She elaborates, “I will tell patients, ‘I’m like, listen, you know, this is, I don’t want to give you advise cause I’m probably gonna be wrong on this as to what the greatest and you know, latest things are,’ but I will say ‘look, you can try over-the-counter things and if you need something beyond that … talk to your internist about that’.” Practitioners who expressed these perceptions generally saw severe OIC and the prescription OIC medications as beyond the scope of their practice. As one rheumatologist explained, “If it was that bad, then they would be seeing their internist, or they’d be going to somebody somewhere to think about it.”
Clinicians also expressed frustration that other providers who prescribed opioid medications did not bring up constipation, especially in the context of post-operative opioid use, which several studies have found often progresses to long-term opioid use for chronic pain resulting from or aggravated by the procedure [
16‐
18]. Dr. B, an internist, described his frustration when his patients came in with constipation after having surgery and the surgeon had not brought up the potential side effects of opioids used post-operatively. He exclaims, “
The surgeons never tell ‘em this stuff.” Several clinicians emphasized to patients that they should become advocates for themselves and bring up side effects such as constipation with their other providers. Dr. R, an internist who works primarily in the urgent care setting, explained that approximately once or twice a week, he saw a patient with severe constipation “
because they were given a narcotic medication after a surgery or a procedure and they weren’t warned about the risks and given the appropriate medication to prevent that side effect, and aren’t even knowledgeable about it until we talk to them.” He discussed all of the potential side effects of opioid medications with patients and encouraged them to
“make sure that the side effect is addressed, that you get a medication in case the constipation develops.”
Patient Perspectives
Patients recognized that their prescribing clinician was not always comfortable treating opioid medication side effects. One patient with fibromyalgia noted, “My doctor tells me about things that are not in his forte. They aren’t pain management. Like I had a problem with my bowels and he said go see a specialist for that … Constipation year after year after year …” She appreciated her provider’s forthcoming attitude and referral to gastroenterology to manager her OIC. Two other patients also described seeing a gastroenterologist after developing OIC during the course of their pain management therapy.
Patients on chronic opioid therapy “Don’t Claim to Have Any Side Effects”
Clinician Perspectives
Many clinicians chronicled how most patients who had been taking opioids for many years were reluctant to bring up side effects. Dr. Z, a primary care provider, recounted how patients who were new to opioid medications were more likely to bring up side effects: “[it’s] the 75 year old who went in and you know fractured their pelvis and came out with narcotics is like, ‘My belly hurts so bad’,” but patients who have been taking opioids for a long time “don’t claim to have any side effects.” One clinician, Dr. A, an internist who had a lot of geriatric patients, explained that patients “probably won’t complain too much because they don’t want you to not give them [the medications].” Another clinician, Dr. J, a pain specialist, explained that she had “patients that come in and they’re begging for it so they’re not complaining of any side effects.” The burden of discussing things like constipation and other side effects thus fell upon the clinician who often had to probe in order to get patients to open up about potential side effects. Clinicians expressed different levels of proactivity with regards to discussing the issue, with some actively bringing it up during follow-up visits, while others assumed patients were likely to be managing the issue or not experiencing it since they did not bring it up. One internist who worked primarily in the urgent care setting noted that he thought patients who brought up side effects were more likely to be taking the medications for “legitimate pain” as opposed to patients who might be taking opioid analgesics for other reasons. In some cases, patients were actively managing their OIC but didn’t discuss it since it had become part of their daily routine. Dr. Z, the internist, explained that “some of them have been taking [opioid medications] for so long that they forget to tell you, ‘Oh yeah, I guess I do take you know a Docusate, you know, with it … ’ that became a normal part of my day-to-day thing.”
Embarrassment was another important reason that clinicians perceived patients did not bring up side effects such as constipation. One internist, Dr. B, used strategies such as humor to bring up sensitive topics. In his experience, patients usually made an appointment for one reason but were actually hoping to bring up issues such as constipation, impotence, or incontinence. When he sensed discomfort, he joked around with them or made it clear that they had to trust in him as a doctor, saying, “Yeah, and I’ll push you know and if I sense resistance I’ll say, ‘Look I’m not trying to embarrass you, though that’s fun too.’ [laughs] But no, I really do say it like that and people laugh and I say, ‘But you understand my job is, I have to pry, I have to push, I gotta get, for me to help you I’ve gotta get the information so if you don’t want to disclose it, it’s your right, but I can’t help you solve your problem.’” Dr. B and other clinicians described using verbal cues such as patients complaining of bloating, “belly pain,” gas, and nausea to try to understand whether the underlying issue was OIC.
Patient Perspectives
However, in the focus groups, patients said they were not afraid to bring up side effects with their clinicians. Several patients appreciated that their doctors continually asked about side effects when refilling medications, including constipation, dizziness, and fatigue. However, many patients also wished their clinicians would bring up other concerns surrounding chronic pain, including mental health issues, sleep, and energy. A few patients mentioned that they had to bring up constipation with pain specialists and other clinicians, even when they were receiving monthly opioid prescriptions. A handful of focus group participants explained that they never experienced constipation severe enough to warrant a discussion with their prescribing clinician.