Dataset Information

Health Services: A Mixed Methods Assessment of Canadian Cancer Patient Education Materials Related to the 2019 Novel Coronavirus.

ABSTRACT: The 2019 novel coronavirus (COVID-19) pandemic has prompted the reorganization in the scheduling and method of care for many patients, including patients diagnosed with cancer. Cancer patients, who have an immunocompromised status, may be at a higher risk of severe symptoms from infection with COVID-19. While information is rapidly evolving regarding COVID-19, Canada, both nationally and provincially, has been conveying new information to patients online. We assessed the content and readability of COVID-19-related online Canadian patient education material (PEM) for cancer patients to determine if the content of the material was written at a grade reading level that the majority of Canadians can understand. PEMs were extracted from provincial cancer agencies and the national Canadian Cancer Society, evaluated using 10 readability scales, qualitatively analyzed to identify their themes and difficult word content. Thirty-eight PEMs from both national and provincial cancers associations were, on average, written above the recommended 7th grade level. Each of the associations' average grade levels were: BC Cancer (11.00 95% confidence interval [CI] 8.27-13.38), CancerControl Alberta (10.46 95% CI 8.29-12.62), Saskatchewan Cancer Agency (11.08 95% CI 9.37-12.80), Cancer Care Manitoba (9.55 95% CI 6.02-13.01), Cancer Care Ontario (9.35 95% CI 6.80-11.90), Cancer Care Nova Scotia (10.95 95% CI 9.86-12.04), Cancer Care Eastern Health Newfoundland and Labrador (10.14 95% CI 6.87-13.41), and the Canadian Cancer Society (10.06 95% CI 8.07-12.05). Thematic analysis identified 4 themes: public health strategy, information about COVID-19, patient instructions during COVID-19, and resources. Fifty-three percent of the complex words identified were medical jargon. This represents an opportunity to improve PEM readability, to allow for greater comprehension amongst a wider target audience.

SUBMITTER: van Ballegooie C

PROVIDER: S-EPMC8482715 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:BackgroundLipoprotein(a) (Lp(a)) is a highly proatherogenic lipid fraction that is a clinically significant risk modifier. Patients wanting to learn more about Lp(a) are likely to use online patient educational materials (OPEMs). However, the readability of OPEMs may exceed the health literacy of the public.ObjectiveThis study aims to assess the readability of OPEMs related to Lp(a). We hypothesized that the readability of these online materials would exceed the sixth grade level recommended by the American Medical Association.MethodsUsing an online search engine, we queried the top 20 search results from 10 commonly used Lp(a)-related search terms to identify a total of 200 websites. We excluded duplicate websites, advertised results, research journal articles, or non-patient-directed materials, such as those intended only for health professionals or researchers. Grade level readability was calculated using 5 standard readability metrics (automated readability index, SMOG index, Coleman-Liau index, Gunning Fog score, Flesch-Kincaid score) to produce robust point (mean) and interval (CI) estimates of readability. Generalized estimating equations were used to model grade level readability by each search term, with the 5 readability scores nested within each OPEM.ResultsA total of 27 unique websites were identified for analysis. The average readability score for the aggregated results was a 12.2 (95% CI 10.9798-13.3978) grade level. OPEMs were grouped into 6 categories by primary source: industry, lay press, research foundation and nonprofit organizations, university or government, clinic, and other. The most readable category was OPEMs published by universities or government agencies (9.0, 95% CI 6.8-11.3). The least readable OPEMs on average were the ones published by the lay press (13.0, 95% CI 11.2-14.8). All categories exceeded the sixth grade reading level recommended by the American Medical Association.ConclusionsLack of access to readable OPEMs may disproportionately affect patients with low health literacy. Ensuring that online content is understandable by broad audiences is a necessary component of increasing the impact of novel therapeutics and recommendations regarding Lp(a).

Project description:BackgroundWhile overactive bladder is often managed in the primary care setting, a number of barriers including embarrassment, poor communication, and low patient adherence contribute to the under-treatment of patients with burdensome urinary symptoms. In order to address these challenges, it is crucial to have a fundamental understanding of patient perspectives toward OAB and urinary symptoms. To meet this aim, researchers designed and conducted a study to identify patients' knowledge, experiences and attitudes, barriers to treatment adherence, and desires and tendencies regarding patient/clinician communications.MethodsA mixed-methods qualitative/quantitative needs assessment of patients with overactive bladder and/or urinary symptoms. Researchers conducted in-depth qualitative interviews via telephone with 40 patients. Interview results informed the design and dissemination of a quantitative survey, which was completed by 200 self-selected respondents who had previously identified themselves as having overactive bladder or bladder problems. Statistical and qualitative analysis of results were conducted.ResultsAmong survey respondents, an average of 3.5 years elapsed between symptom onset and seeking diagnosis by a physician. In the long term most patients do not experience improvement in symptoms. Medication non-adherence is common and is related to therapy effectiveness and adverse effects. Patients clearly indicate that communication and patient/physician relationships are important to them and they would prefer the clinician initiate the conversation on overactive bladder. Patient experiences, perspectives, and attitudes toward their bladder symptoms differ in many ways from clinicians' assumptions.ConclusionsThe significant time gap between symptom onset and diagnosis indicates ongoing need for screening and diagnosis of overactive bladder. Contrary to guideline recommendations, urinalysis and physical examination are not widely used in clinical practice. Many patients experience no improvement in symptoms over time. Patients indicate that clinician/patient relationships and communication regarding their condition are important.

Project description:IntroductionThe impact of patient centredness (PC) in healthcare has grown over the years. However, conceptualisations of PC are heterogeneous. Existing patient-reported measures of PC have shown inconsistencies and shortcomings. This impedes the comparison of results across studies. To foster PC, it is important to know which dimensions matter most to patients and to be able to measure its current extent from the patients' perspective. This study aims (1) to assess relevance of dimensions of PC from the patients' perspective, (2) to develop and psychometrically test a core set of patient-reported experience measures (PREMs) assessing PC and (3) to investigate the feasibility of implementation of this core set in routine healthcare.Methods and analysisA mixed-methods approach will be used. In phase 1, 200 patients will assess the relevance of the dimensions of PC in a Delphi study using a plain language description. In phase 2, the core set of PREMs will be developed through literature reviews, focus groups, key informant interviews and content validity ratings. The core set will be tested psychometrically in a cross-sectional study with 2000 inpatient and outpatients with different chronic conditions (ie, cancer, cardiovascular diseases, mental disorders and musculoskeletal disorders). In phase 3, the feasibility of implementation of the core set will be assessed through semistructured interviews with healthcare practitioners after piloting in routine care. Furthermore, an expert workshop will be held on how to foster implementation.Ethics and disseminationThe study will be carried out in accordance to the latest version of the Helsinki Declaration of the World Medical Association and principles of good scientific practice. The study was approved by the Ethics Committee of the Medical Association Hamburg, Germany (study ID: PV5724). The study results will be disseminated in scientific journals and through collaboration partners and plain language press releases.

Dataset Information

Health Services: A Mixed Methods Assessment of Canadian Cancer Patient Education Materials Related to the 2019 Novel Coronavirus.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets