Cassandra L. Firneno

Patients’ knowledge and beliefs concerning gout and its treatment: a population based study

BackgroundFor patients to effectively manage gout, they need to be aware of the impact of diet, alcohol use, and medications on their condition. We sought to examine patients’ knowledge and beliefs concerning gout and its treatment in order to identify barriers to optimal patient self-management.MethodsWe identified patients (≥18 years of age) cared for in the setting of a multispecialty group practice with documentation of at least one health care encounter associated with a gout diagnosis during the period 2008–2009 (n = 1346). Patients were sent a questionnaire assessing knowledge with regard to gout, beliefs about prescription medications used to treat gout, and trust in the physician. Administrative electronic health records were used to identify prescription drug use and health care utilization.ResultsTwo hundred and forty patients returned surveys out of the 500 contacted for participation. Most were male (80%), white (94%), and aged 65 and older (66%). Only 14 (6%) patients were treated by a rheumatologist. Only a minority of patients were aware of common foods known to trigger gout (e.g., seafood [23%], beef [22%], pork [7%], and beer [43%]). Of those receiving a urate-lowering medication, only 12% were aware of the short-term risks of worsening gout with initiation. These deficits were more common in those with active as compared to inactive gout.ConclusionKnowledge deficits about dietary triggers and chronic medications were common, but worse in those with active gout. More attention is needed on patient education on gout and self-management training.

CA2-03: “What Would You Say to this Patient?” Cancer Care Providers’ Attitudes and Experiences

Background/Aims Effective patient-provider communication is critical in cancer care but often does not occur. Understanding providers’ perspectives on challenges in cancer care communication could support interventions. Methods We surveyed providers in primary care, oncology, and oncology nursing at three CRN sites (Group Health Cooperative, WA; Kaiser Permanente, GA; Fallon Clinic, MA). Questionnaires assessed providers’ attitudes and experiences about communicating with cancer patients, situations providers find challenging, and how providers would communicate in two scenarios (error involving multiple providers leading to delayed diagnosis; miscommunication regarding patient symptoms). Results Questionnaires were received from 406 of the 682 eligible providers (59%). Nearly all (98% (393 of 399)) reported their organizations value good patient-provider communication, and 95% (374 of 393) agreed that they communicate effectively with cancer patients. However, only 62% (239 of 385) agreed that they knew when their cancer patients had unanswered concerns or questions, and 67% (262 of 391) agreed that they were aware of most of the serious communication breakdowns that occurred in their patients’ care. Almost all, 99% (394 of 400) 99% agreed that their organization should encourage patients to alert the system when there has been a serious care breakdown, and 88% (340 of 386) agreed these reports would provide actionable information. Providers found some communication situations especially difficult. A majority (61% (242 of 397)) found it extremely/very difficult to respond to patients’ unrealistic beliefs about prognosis, 55% (217 of 395) found it extremely/very difficult to respond to patients’ concerns about delayed diagnosis, but only 5% (21 of 397) found it extremely/very difficult to respond to patients who are unhappy about care from another clinician. In response to a hypothetical patient who experienced a delayed breast cancer diagnosis, 55% (221 of 399) would provide very limited information to the patient, not explicitly mentioning the error causing the delay. Discussion Cancer care providers value patient-provider communication but find discussions of prognosis, as well as disclosure regarding care breakdowns and delayed diagnosis, especially challenging. Providers support mechanisms to solicit cancer patients’ concerns about their care. Health systems should explore how to create care delivery environments that improve patient-provider communication.

Measuring Harm in Health Care: Optimizing Adverse Event Review

Objective: The objective of this study was to identify modifiable factors that improve the reliability of ratings of severity of health care–associated harm in clinical practice improvement and research. Methods: A diverse group of clinicians rated 8 types of adverse events: blood product, device or medical/surgical supply, fall, health care–associated infection, medication, perinatal, pressure ulcer, surgery. We used a generalizability theory framework to estimate the impact of number of raters, rater experience, and rater provider type on reliability. Results: Pharmacists were slightly more precise and consistent in their ratings than either physicians or nurses. For example, to achieve high reliability of 0.83, 3 physicians could be replaced by 2 pharmacists without loss in precision of measurement. If only 1 rater was available for rating, ∼5% of the reviews for severe harm would have been incorrectly categorized. Reliability was greatly improved with 2 reviewers. Conclusions: We identified factors that influence the reliability of clinician reviews of health care–associated harm. Our novel use of generalizability analyses improved our understanding of how differences affect reliability. This approach was useful in optimizing resource utilization when selecting raters to assess harm and may have similar applications in other settings in health care.

PS2-24: Using Patient-Centered Conversational Interviews to Collect Data from Cancer Survivors

Background The richness of patients’ experiences warrants thoughtful and careful examination. While standardized surveys or other structured approaches can be useful when the goal is to count or summarize relatively uncomplicated experiences, they may be less appropriate when the objective is to study sensitive topics, such as medical errors during cancer care. This abstract describes and evaluates a flexible, patient-centered approach to interviewing patients. Methods Using a patient-centered telephone interview guide, we interviewed cancer patients who had experienced a problem during their care. Participants were first asked to fully describe their experience; follow-up questions probed for details relevant to the study questions. Question order varied, consistent with a conversational approach. Interviews lasted 60–90 minutes and were digitally recorded. We calculated the percentage of words uttered by participants (compared to the interviewer) as a measure of participant engagement, and noted whether participants corrected the interviewer. Strengths and limitations of this approach are also identified. Results Seventy-eight patients were interviewed; 96% (75/78) were female, mean age was 57.7 [SD 10.6]. Overall, participants uttered an average of 77% (6,190/8,001) of the words in the interview. Participants corrected the interviewer at least once in 80% (62/78) of the interviews. Question order was flexible, and probes were used at the discretion of the interviewer. Thus, the interviewer could adapt her questioning to follow the participant’s lead, and sensitively encourage and support participants in sharing details of painful experiences. One benefit of this technique was that it allowed the interviewer to convey interest and respect, which enhanced rapport early in the interview. It also enabled participants to recall details that may otherwise have been forgotten. The drawbacks of this approach include longer interview times; discussion of unrelated topics (by participants) and increased time required for data analyses. Conclusions Patient-centered conversational interviewing can facilitate investigation of emotionally-charged, personal experiences. This approach appears more effective than standardized interviewing techniques when the goal is to fully understand patients’ experiences, such as those of cancer survivors who believe that an error occurred during their cancer care.

C-C1-03: A GPS for Navigating Sensitive Research Topics: The Case of Adverse Events in Oncology

Background Adverse events and medical errors are challenging aspects of clinical care delivery, and also present challenges as topics for research. Nonetheless, understanding how and why such errors occur is critical to rendering improvements. Using examples from a multi-site study of problems in cancer care, we identify potential pitfalls and strategies to consider when researching sensitive or thorny topics in our delivery systems. Methods In the context of the CRN Cancer Communication Research Center our team is studying adverse events and medical errors in cancer care (both in primary and specialty care settings), and how communication could be use to prevent problems and/or respond to patients when something goes wrong in their care. Throughout the course of developing the study, the three sites encountered challenging dilemmas pertaining to risk management, quality improvement, stakeholder “buy-in” to the study idea, and IRB review. Results Case studies within the larger context of a study on communication in cancer care will be presented to illustrate our approaches to addressing the challenges in each area. We will review how, in some instances, the anticipated challenges did not manifest themselves, and what has been required on the part of the study team to ensure ongoing buy-in, even as findings from the actual research study illuminate deficits in care. Conclusions Sensitive research topics, especially those which may reveal opportunities for improving medical care, or confronting a persistent problem in quality of care, require particular attention to partnerships with key leaders, frequent communication, and an openness to modifying the research to meet the needs of both the study team and the clinical setting.