Patient Barriers to Compliance With Cancer Pain Regimens

CHAPEL HILL, NC--Although the health care professional is often to blame when cancer pain management is inadequate, barriers to pain control can also stem from patients’ forgetfulness, stoicism, and fatalism. "A cancer pain management plan cannot be effective if patients fail to report pain and adhere to treatment recommendations," said

Tracy Thomason, PharmD, and colleagues at the University of North Carolina Hospitals, Chapel Hill; Duke University Medical Center, Durham; and Rex Cancer Center, Raleigh.

To identify patient-centered issues in pain control, the North Carolina researchers interviewed 239 patients with cancer who had experienced cancer-related pain in the previous month or were currently taking analgesics for cancer pain control.

Patients were asked to assess their pain severity, specify their pain medication use, and assess their frequency of communication about pain and pain control with physicians, nurses, and pharmacists. When a concern about pain medication was identified, they were asked, "Does this keep you from taking your medication on schedule?" A yes answer was defined as a "barrier."

The concerns surveyed were fear of running out of pain medication, side effects, addiction, tolerance, forgetfulness, stoicism (belief they should tolerate pain), and dependence on medication to control pain (see table)

The most frequently reported barrier to pain control was forgetting to take pain medications, cited by one-third of patients surveyed (J Pain Symptom Manage 15:275-284, 1998). "Forgetfulness remains a difficult barrier to overcome even with the many tools available to prompt patients to take their medicine," the authors said.

The second most frequent concern was the patients’ belief that they should be able to tolerate pain without medication. "Over one-half of the patients acknowledged concern with this question, and one-third of the patients who expressed concern reported that this belief results in noncompliance with prescribed analgesic therapy," the investigators said. They speculate that this concern stems from religious and moral beliefs that patients who need opioid drugs are somehow weak in character.

Elimination of this belief is a high priority, but "unfortunately, it may be far more difficult to design interventions to eradicate this barrier than other more commonly recognized barriers," the researchers said.

Although 58% of patients reported concerns about side effects such as drowsiness and dizziness, only 18% said that these concerns prevented them from taking their medication. "Education about the development of tolerance to these side effects of opioid analgesics could minimize this concern," the researchers said.

Concerns over the possibility of addiction and development of tolerance were expressed by 27% and 30% of patients, respectively, and led to noncompliance with the pain control regimen in 17% and 10% of patients, respectively, suggesting the need for continued educational efforts in these areas.

Answers to questions about how others perceived their pain suggest that many cancer pain patients are fatalistic about their situation. About 30% of patients agreed with the statement that "health care professionals thought nothing more can be done about my pain," and the same percentage agreed that family and friends thought the same. Furthermore, about 15% felt that both health care professionals and family and friends "did not understand the extent of my pain."

Overcoming Fatalism

These findings suggest the need for focus groups and other education programs for both patients and families, the investigators said. "When emphasis on overcoming fatalism occurs early in a patient’s therapy, the ability to report pain to clinicians and expectations of pain relief should be enhanced," they said.

In this study, 93% of patients reported talking most often to their physician about pain control vs 68% who talked most often to a nurse and 39% to a pharmacist. "This information should encourage physicians to enhance their provision of information designed to alleviate fears and eliminate barriers," the researchers said. "Conversely, nurses and pharmacists should be encouraged to become more involved in patient education regarding cancer pain and its management."

Overall, 54% of patients reported they were satisfied with their pain control. The researchers called this figure "promising, but the goal of 100% satisfaction remains elusive. Only through patient and healthcare provider education and minimization of identified barriers can this goal be achieved."

Dr. Thomason’s co-workers were Jeannine McCune, PharmD, Stephen Bernard, MD, and Celeste Lindley, PharmD, from the University of North Carolina Hospitals; Eric Winer, MD, from Duke University; and Steve Tremont, MD, from Rex Cancer Center.