Patients' reluctance to report pain and to use analgesics are considered major barriers to pain management. To explore this problem, 270 patients with cancer completed a 27-item self-report questionnaire (BQ) that assessed the extent to which they have concerns about reporting pain and using pain medication. The 8 specific concerns included fear of addiction, beliefs that 'good' patients do not complain about pain, and concern about side effects. Patients also completed a measure of pain severity and pain interference (the BPI). The percentages of patients having concerns assessed by the BQ ranged from 37% to 85%. Those who were older, less educated, or had lower incomes were more likely to have concerns. Higher levels of concern were correlated with higher levels of pain. Based on their reports of pain medications used in the past week and on their reports of pain severity, patients were categorized as under-medicated versus adequately medicated. Those who were under-medicated reported significantly higher levels of concern. The data are discussed in terms of implications for research and practice.

Patients' beliefs can act as barriers to optimal management of cancer pain. The Barriers Questionnaire (BQ) is a tool used to evaluate such barriers. Here, the BQ has been revised to reflect changes in pain management practices, resulting in the Barriers Questionnaire-II (BQ-II), a 27-item, self report instrument. This paper presents the results from two studies where the psychometric properties of the BQ-II were evaluated. In the first study, the responses of 27 nurses trained in pain management were compared to responses of a convenience sample of 12 patients with cancer. The results indicated that patients with cancer had higher mean scores on the BQ-II than did nurses trained in pain management. In the second study, a convenience sample of 172 patients with cancer responded to the BQ-II and a set of pain and quality of life (QOL) measures. A factor analysis supported four factors. Factor one, physiological effects, consists of 12 items addressing the beliefs that side effects of analgesics are inevitable and unmanageable, concerns about tolerance, and concerns about not being able to monitor changes in one's body when taking strong pain medications. Factor two, Fatalism, consists of three items addressing fatalistic beliefs about cancer pain and its management. Factor three, Communication, consists of six items addressing the concern that reports of pain distract the physician from treating the underlying disease, and the belief that 'good' patients do not complain of pain. The fourth and final factor, harmful effects, consists of six items addressing fear of becoming addicted to pain medication and the belief that pain medications harm the immune system. The BQ-II total had an internal consistency of 0.89, and alpha for the subscales ranged from 0.75 to 0.85. Mean (SD) scores on the total scale was 1.52 (0.73). BQ-II scores were related to measures of pain intensity and duration, mood, and QOL. Patients who used adequate analgesics for their levels of pain had lower scores on the BQ-II than did patients who used inadequate analgesics. The BQ-II is a reliable and valid measure of patient-related barriers to cancer pain management.

Background Few trials have examined long-term outcomes of advance care planning (ACP) interventions. We examined the efficacy of an ACP intervention on preparation for end-of-life decision making for dialysis patients and surrogates and for surrogates’ bereavement outcomes. Study Design A randomized trial compared an ACP intervention (Sharing Patient’s Illness Representations to Increase Trust [SPIRIT]) to usual care alone, with blinded outcome assessments. Setting & Participants 420 participants (210 dyads of prevalent dialysis patients and their surrogates) from 20 dialysis centers. Intervention Every dyad received usual care. Those randomly assigned to SPIRIT had an in-depth ACP discussion at the center and a follow-up session at home 2 weeks later. Outcomes & Measurements Primary outcomes: preparation for end-of-life decision making, assessed for 12 months, included dyad congruence on goals of care at end of life, patient decisional conflict, surrogate decision-making confidence, and a composite of congruence and surrogate decision-making confidence. Secondary outcomes: bereavement outcomes, assessed for 6 months, included anxiety, depression, and posttraumatic distress symptoms completed by surrogates after patient death. Results Primary outcomes: adjusting for time and baseline values, dyad congruence (OR, 1.89; 95% CI, 1.1–3.3), surrogate decision-making confidence (β = 0.13; 95% CI, 0.01–0.24), and the composite (OR, 1.82; 95% CI, 1.0–3.2) were better in SPIRIT than controls, but patient decisional conflict did not differ between groups (β = −0.01; 95% CI, −0.12 to 0.10). Secondary outcomes: 45 patients died during the study. Surrogates in SPIRIT had less anxiety (β = −1.13; 95% CI, −2.23 to −0.03), depression (β = −2.54; 95% CI, −4.34 to −0.74), and posttraumatic distress (β = −5.75; 95% CI, −10.9 to −0.64) than controls. Limitations Study was conducted in a single US region. Conclusions SPIRIT was associated with improvements in dyad preparation for end-of-life decision making and surrogate bereavement outcomes.

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