Background

Cancer impacts individuals' life goals. Recent cancer care guidelines recommend discussing life goals as part of patient-provider communication. The goal of this study was to understand patients' attitudes toward goal sharing with their cancer care providers.

Patients and methods

Semi-structured questionnaires were conducted via email with cancer patients and survivors (n = 39) on an online social network called Smart Patients. Participants answered open-ended questions about their life goals. They then completed a survey regarding their attitudes toward goal sharing with healthcare providers. The study team used an integrated inductive-deductive qualitative analysis to identify conceptual themes.

Results

Participants listed goals related to improving physical activity, control, enjoyment/leisure, and inner strength while reducing pain, anxiety, fear of recurrence, and uncertainty. Most of these goals were life goals rather than goals specifically related to medical care. Across all goals, there was a focus on returning to normality. Our findings show that 87% of participants expect their cancer specialist to discuss their treatment preferences and goals regularly with them. However, participants were reluctant to share their goals with their providers. Respondents felt that their providers did not have an interest in their life goals or time to address them in addition to their medical treatment.

Conclusion

Even though cancer patient-provider communication guidelines advocate for discussions around life goals, participants in this study expressed reluctance to share life goals with providers. Further efforts to align expectations of patients and providers may facilitate adherence to cancer communication guidelines about life goals.

Implications for cancer survivors

Cancer survivors should be aware that discussing life goals is part of recommended communication with their cancer care teams.

Purpose

An initiative to implement patient-centered medication labeling at 4 pharmacies within a publicly funded safety-net healthcare system is described.

Summary

Medication nonadherence negatively affects patient outcomes and safety. Nonadherence has been attributed to poor understanding of instructions on medication labels. Research has demonstrated that patient-centered labeling (PCL) can improve adherence and produce safer medication-taking practices. As part of a mixed-methods study by a safety-net health system, audits of nearly 9,000 prescription labels generated at 4 pharmacy sites, as well as interviews with 6 stakeholder informants, were conducted to determine PCL adoption rates and factors contributing to success. Descriptive statistics were used to analyze audit data; constructs of the Consolidated Framework for Implementation Research were used to analyze interview data. Among the 4 sites, 3 pharmacies successfully converted more than 85% of audited prescriptions to a PCL format; 1 pharmacy converted less than 25% of prescriptions. Barriers to implementation included pharmacists' reluctance to modify prescriber instructions and inadequate real-time data on conversion rates. Interviewees perceived that leadership and policy directives promoted PCL conversion efforts. Successful pharmacies used adaptable software, had closer communication networks with prescribers, and/or used automation to facilitate PCL conversion.

Conclusion

Three pharmacies successfully converted more than 85% of labels for audited prescriptions to a PCL format; 1 pharmacy converted less than 25% of prescriptions. Barriers to implementation included pharmacists' reluctance to modify prescriber instructions, inadequate real-time data on conversation rates, and lack of customizable software to automate changes.

Nonadherence to medication regimens is common, with approximately 50% of patients not taking their medications as prescribed. The Universal Medication Schedule (UMS) is a set of standardized, evidence-based, and patient-centered instructions for pill-form medications that has demonstrated improvements in adherence by promoting patient comprehension. An urban, publicly funded, integrated health care system attempted to adopt UMS labeling but had limited success at its largest pilot site, which was a safety-net health care system's outpatient pharmacy. To assess barriers to implementation, we engaged pharmacists at this site in group interviews. We thematically analyzed transcripts by integrating sociological work on standardization with grounded theory methodologies. In addition to lacking technological infrastructure, tensions among efficiency, efficacy, and effectiveness, and tension between individual/biomedical versus population health perspectives emerged as barriers to implementation. Additionally, we discovered that hierarchies of professional power impeded uptake. For successful implementation of evidence-based practices for vulnerable populations in resource-poor settings, efforts must anticipate and reconcile the tensions among conflicting demands, professional hierarchies, and divergent orientations to patient care. [HLRP: Health Literacy Research and Practice. 2018;2(3):e128-e131.].

Patient safety in ambulatory care has not been routinely measured. California implemented a pay-for-performance program in safety-net hospitals that incentivized measurement and improvement in key areas of ambulatory safety: referral completion, medication safety, and test follow-up. We present two years of program data (collected during July 2015-June 2017) and show both suboptimal performance in aspects of ambulatory safety and questionable reliability in data reporting. Performance was better in areas that required limited coordination or patient engagement-for example, annual medication monitoring versus follow-up after high-risk mammograms. Health care systems that lack seamlessly integrated electronic health records and patient registries encountered barriers to reporting reliable ambulatory safety data, particularly for measures that integrated multiple data elements. These data challenges precluded accurate performance measurement in many areas. Policy makers and safety advocates need to support the development of information systems and measures that facilitate the accurate ascertainment of the health systems, patients, and clinical tasks at greatest risk for ambulatory safety failures.

Background

Warfarin requires individualized dosing and monitoring in the ambulatory setting for protection against thromboembolic disease. Yet in multiple settings, patients spend upwards of 30% of time outside the therapeutic range, subjecting them to an increased risk of adverse events. At an urban, publicly funded clinic, the electronic health record (EHR) would not support integration with extant warfarin management software, which led to the creation and implementation of an electronic patient registry and a complementary team-based work flow to provide real-time health-system-level data for warfarin patients.

Methods

Creation of the registry, which began in August 2014, entailed use of an existing platform, which could interface with the outpatient EHR. The registry was designed to help ensure regular testing and monitoring of patients while enabling identification of patients and subpopulations with suboptimal management. The work flow used for the clinic's warfarin patients was also redesigned. An assessment indicated that the registry identified 341 (96%) of 357 patients actively seen in the clinic.

Results

For the cohort of the 357 patients in the registry, the no-show rate decreased from 31% (preimplementation, August 2014-December 2014) to 21% (postimplementation, January 2015-November 2015). The ratio of visits to no-shows increased from 2.3 to 4.0 visits.

Conclusion

Design and implementation of an electronic registry in conjunction with a complementary work flow established an active tracking system that improved treatment monitoring for patients on anticoagulation therapy. Registry creation also facilitated assessment of the quality of care and laid the groundwork for ongoing evaluation and quality improvement efforts.

BACKGROUND:Studies estimate that the number of cancer survivors will double by 2050 due to improvements in diagnostic accuracy and treatment efficacy. Despite the growing population of cancer survivors, there is a paucity of research regarding how these individuals experience the transition from active treatment to long-term surveillance. While research has explored this transition from more organized venues, such as support groups for cancer survivors, this paper explores the discourses surrounding cancer survivorship on social media, paying particular attention to how individuals who identify as cancer survivors represent their experience. METHODS:We identified social media posts relating to cancer survivorship on Twitter and Instagram in early June 2018, in order to coincide with National Cancer Survivorship Day on June 3, 2018. We used nine pre-selected hashtags to identify content. For each hashtag, we manually collected the 150 most recent posts from Twitter and the 100 most recent plus the top 9 posts from Instagram. Our preliminary sample included 1172 posts; after eliminating posts from one hashtag due to irrelevance, we were left with 1063 posts. We randomly sampled 200 of these to create a subset for analysis; after review for irrelevant posts, 193 posts remained for analysis (118 from Instagram and 75 from Twitter). We utilized a grounded theory approach to analyze the posts, first open-coding a subset to develop a codebook, then applying the codebook to the rest of the sample and finally memo writing to develop themes. RESULTS:Overall, there is substantial difference in the tone and thematic content between Instagram and Twitter posts, Instagram takes on a more narrative form that represents journeys through cancer treatment and subsequent survivorship, whereas Twitter is more factual, leaning towards advocacy, awareness and fundraising. In terms of content type, 120 posts (62%) of the sample were images, of which 42 (35%) were images of the individual posting and 28 (23%) were images of patients posted by family or friends. Of the remaining images, 14 (12%) were of support groups and 7 (6%) were of family or friends. We identified four salient themes through analysis of the social media posts from Twitter and Instagram: social support, celebrating milestones and honoring survivors, expressing identity, and renewal vs. rebirth. DISCUSSION:We observed a marked relationship between physical appearance, functional status and survivorship. Additionally, our findings suggest the importance of social support for cancer patients and survivors as well as the role social media can pay in identity formation. CONCLUSION:Our findings suggest that individuals who identify as survivors on social media define their identity fluidly, incorporating elements of physical, emotional and psychological health as well as autonomy.