Content shared on social media for national cancer survivors day 2018.

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

Efficiency, Efficacy, and Power in the Implementation of a Medication Adherence Aid.

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.]

Gaps in Treatment and Surveillance: Head and Neck Cancer Care in a Safety-Net Hospital.

Objective:Treatment delays and suboptimal adherence to posttreatment surveillance may adversely affect head and neck cancer (HNC) outcomes. Such challenges can be exacerbated in safety-net settings that struggle with limited resources and serve a disproportionate number of patients vulnerable to gaps in care. This study aims to characterize treatment delays and adherence with posttreatment surveillance in HNC care at an urban tertiary care public hospital in San Francisco. Study Design:Retrospective chart review. Setting:Urban tertiary care public hospital in San Francisco. Subjects and Methods:We identified all cases of HNC diagnosed from 2008 to 2010 through the electronic medical record. We abstracted data, including patient characteristics, disease characteristics, pathology and radiology findings, treatment details, posttreatment follow-up, and clinical outcomes. Results:We included 64 patients. Median time from diagnosis to treatment initiation (DTI) was 57 days for all patients, 54 days for patients undergoing surgery only, 49 days for patients undergoing surgery followed by adjuvant radiation ± chemotherapy, 65 days for patients undergoing definitive radiation ± chemotherapy, and 29 days for patients undergoing neoadjuvant chemotherapy followed by radiation or chemoradiation. Overall, 69% of patients completed recommended treatment. Forty-two of 61 (69%) patients demonstrated adherence to posttreatment visits in year 1; this fell to 14 out of 30 patients (47%) by year 5. Conclusion:DTI was persistently prolonged in this study compared with prior studies in other public hospital settings. Adherence to posttreatment surveillance was suboptimal and continued to decline as the surveillance period progressed

Patient characteristics associated with objective measures of digital health tool use in the United States: A literature review.

The study sought to determine which patient characteristics are associated with the use of patient-facing digital health tools in the United States.We conducted a literature review of studies of patient-facing digital health tools that objectively evaluated use (eg, system/platform data representing frequency of use) by patient characteristics (eg, age, race or ethnicity, income, digital literacy). We included any type of patient-facing digital health tool except patient portals. We reran results using the subset of studies identified as having robust methodology to detect differences in patient characteristics.We included 29 studies; 13 had robust methodology. Most studies examined smartphone apps and text messaging programs for chronic disease management and evaluated only 1-3 patient characteristics, primarily age and gender. Overall, the majority of studies found no association between patient characteristics and use. Among the subset with robust methodology, white race and poor health status appeared to be associated with higher use.Given the substantial investment in digital health tools, it is surprising how little is known about the types of patients who use them. Strategies that engage diverse populations in digital health tool use appear to be needed.Few studies evaluate objective measures of digital health tool use by patient characteristics, and those that do include a narrow range of characteristics. Evidence suggests that resources and need drive use

Hypoglycemia is More Common Among Type 2 Diabetes Patients with Limited Health Literacy: The Diabetes Study of Northern California (DISTANCE)

Little is known about the frequency of significant hypoglycemic events in actual practice. Limited health literacy (HL) is common among patients with type 2 diabetes, may impede diabetes self-management, and thus HL could increase the risk of hypoglycemia. To determine the proportion of ambulatory, pharmacologically-treated patients with type 2 diabetes reporting ≥1 significant hypoglycemic events in the prior 12 months, and evaluate whether HL is associated with hypoglycemia. Cross-sectional analysis in an observational cohort, the Diabetes Study of Northern California (DISTANCE). The subjects comprised 14,357 adults with pharmacologically-treated, type 2 diabetes who are seen at Kaiser Permanente Northern California (KPNC), a non-profit, integrated health care delivery system. Patient-reported frequency of significant hypoglycemia (losing consciousness or requiring outside assistance); patient-reported health literacy. At least one significant hypoglycemic episode in the prior 12 months was reported by 11% of patients, with the highest risk for those on insulin (59%). Patients commonly reported limited health literacy: 53% reported problems learning about health, 40% needed help reading health materials, and 32% were not confident filling out medical forms by themselves. After adjustment, problems learning (OR 1.4, CI 1.1-1.7), needing help reading (OR 1.3, CI 1.1-1.6), and lack of confidence with forms (OR 1.3, CI 1.1-1.6) were independently associated with significant hypoglycemia. Significant hypoglycemia was a frequent complication in this cohort of type 2 diabetes patients using anti-hyperglycemic therapies; those reporting limited HL were especially vulnerable. Efforts to reduce hypoglycemia and promote patient safety may require self-management support that is appropriate for those with limited HL, and consider more vigilant surveillance, conservative glycemic targets or avoidance of the most hypoglycemia-inducing medications

Güvercin

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Expanding the Universal Medication Schedule: a patient-centred approach

Improved drug labelling for chronic pill-form medications has been shown to promote patient comprehension, adherence and safety. We extended health literacy principles and included patients' perspectives to improve instructions for: (1) non-pill form, (2) short term, (3) ‘as needed,’ (4) tapered and (5) escalating dose medications

Validation of Self-Reported Health Literacy Questions Among Diverse English and Spanish-Speaking Populations

BackgroundLimited health literacy (HL) contributes to poor health outcomes and disparities, and direct measurement is often time-intensive. Self-reported HL questions have not been validated among Spanish-speaking and diverse English-speaking populations.ObjectiveTo evaluate three self-reported questions: 1 "How confident are you filling out medical forms?"; 2 "How often do you have problems learning about your medical condition because of difficulty understanding written information?"; and 3 "How often do you have someone help you read hospital materials?" Answers were based on a 5-point Likert scale.DesignThis was a validation study nested within a trial of diabetes self-management support in the San Francisco Department of Public Health.ParticipantsEnglish and Spanish-speaking adults with type 2 diabetes receiving primary care.MethodsUsing the Test of Functional Health Literacy in Adults (s-TOFHLA) in English and Spanish as the reference, we classified HL as inadequate, marginal, or adequate. We calculated the C-index and test characteristics of the three questions and summative scale compared to the s-TOFHLA and assessed variations in performance by language, race/ethnicity, age, and education.Key resultsOf 296 participants, 48% were Spanish-speaking; 9% were White, non-Hispanic; 47% had inadequate HL and 12% had marginal HL. Overall, 57% reported being confident with forms "somewhat" or less. The "confident with forms" question performed best for detecting inadequate (C-index = 0.82, (0.77-0.87)) and inadequate plus marginal HL (C index = 0.81, (0.76-0.86); p<0.01 for differences from other questions), and performed comparably to the summative scale. The "confident with forms" question and scale also performed best across language, race/ethnicity, educational attainment, and age.ConclusionsA single self-reported HL question about confidence with forms and a summative scale of three questions discriminated between Spanish and English speakers with adequate HL and those with inadequate and/or inadequate plus marginal HL. The "confident with forms" question or the summative scale may be useful for estimating HL in clinical research involving Spanish-speaking and English-speaking, chronically-ill, diverse populations