Background: Electronic health (e-health) tools may support patients' self-management of chronic kidney disease. We aimed to identify preferences of patients with chronic kidney disease, caregivers and health care providers regarding content and features for an e-health tool to support chronic kidney disease self-management. Methods: A patient-oriented research approach was taken, with 6 patient partners (5 patients and 1 caregiver) involved in study design, data collection and review of results. Patients, caregivers and clinicians from across Canada participated in a 1-day consensus workshop in June 2018. Using personas (fictional characters) and a cumulative voting technique, they identified preferences for content for 8 predetermined topics (understanding chronic kidney disease, diet, finances, medication, symptoms, travel, mental and physical health, work/school) and features for an e-health tool. Results: There were 24 participants, including 11 patients and 6 caregivers, from across Canada. The following content suggestions were ranked the highest: basic information about kidneys, chronic kidney disease and disease progression; reliable information on diet requirements for chronic kidney disease and comorbidities, renal-friendly foods; affordability of medication, equipment, food, financial resources and planning; common medications, adverse effects, indications, cost and coverage; symptom types and management; travel limitations, insurance, access to health care, travel checklists; screening and supports to address mental health, cultural sensitivity, adjusting to new normal; and support to help integrate at work/school, restrictions. Preferred features included visuals, the ability to enter and track health information and interact with health care providers, "on-the-go" access, links to resources and access to personal health information. Interpretation: A consensus workshop developed around personas was successful for identifying detailed subject matter for 8 predetermined topic areas, as well as preferred features to consider in the codevelopment of a chronic kidney disease self-management e-health tool. The use of personas could be applied to other applications in patient-oriented research exploring patient preferences and needs in order to improve care and relevant outcomes.
Background Supporting patients to self-manage their chronic kidney disease (CKD) has been identified as a research priority by patients with CKD and those who care for them. Self-management has been shown to slow CKD progression and improve the quality of life of individuals living with the disease. Previous work has identified a need for a person-centered, theory-informed, web-based tool for CKD self-management that can be individualized to a patient’s unique situation, priorities, and preferences. We addressed this gap using an integrated knowledge translation method and patient engagement principles. Objective The aim of this study is to conduct systematic co-design and usability testing of a web-based self-management prototype for adults with CKD (nondialysis and nontransplant) and their caregivers to enhance self-management support. Methods A multistep, iterative system development cycle was used to co-design and test the My Kidneys My Health prototype. The 3-step process included creating website features and content using 2 sequential focus groups with patients with CKD and caregivers, heuristic testing using the 10 heuristic principles by Nielsen, and usability testing through in-person 60-minute interviews with patients with CKD and their caregivers. Patients with CKD, caregivers, clinicians, researchers, software developers, graphic designers, and policy makers were involved in all steps of this study. Results In step 1, 18 participants (14 patients and 4 caregivers) attended one of the 2 sequential focus groups. The participants provided specific suggestions for simplifying navigation as well as suggestions to incorporate video, text, audio, interactive components, and visuals to convey information. A total of 5 reviewers completed the heuristic analysis (step 2), identifying items mainly related to navigation and functionality. Furthermore, 5 participants completed usability testing (step 3) and provided feedback on video production, navigation, features and functionality, and branding. Participants reported visiting the website repeatedly for the following features: personalized food tool, my health care provider question list, symptom guidance based on CKD severity, and medication advice. Usability was high, with a mean system usability score of 90 out of 100. Conclusions The My Kidneys My Health prototype is a systematically developed, multifaceted, web-based CKD self-management support tool guided by the theory and preferences of patients with CKD and their caregivers. The website is user friendly and provides features that improve user experience by tailoring the content and resources to their needs. A feasibility study will provide insights into the acceptability of and engagement with the prototype and identify preliminary patient-reported outcomes (eg, self-efficacy) as well as potential factors related to implementation. This work is relevant given the shift to virtual care during the current pandemic times and provides patients with support when in-person care is restricted.
This paper presents the results of a systematic review, designed to explore how patient -centred care is defined in the dental literature. An electronic search of MEDLINE (1946MEDLINE ( -2012, Embase (1980Embase ( -2012 PsycINFO (1806PsycINFO ( -2012, the Cochrane Library and non-peer reviewed literature was conducted using a standardised search protocol. Definitions of patient centred care were identified and scored using standard scoring criteria to evaluate quality of definition and quality of evidence. The findings showed that there is currently no shared definition of what constitutes patient-centred care in dentistry and the available data come from low quality studies.
Background: Although numerous websites for patients with chronic kidney disease (CKD) are available, little is known about their content and quality. Objective: To evaluate the quality of CKD websites, and the degree to which they align with information needs identified by patients with CKD. Methods: We identified websites by entering “chronic kidney disease” in 3 search engines: Google.com (with regional variants for Australia, Canada, the United Kingdom, and the United States), Bing.com, and Yahoo.com. We included the first 50 unique English-language sites from each search. We evaluated website content using a 30-point scale comprising 8 priority content domains identified by patients with CKD ( understanding CKD, diet, symptoms, medications, mental/physical health, finances, travel, and work/school). We used standardized tools to evaluate usability, reliability, and readability (DISCERN, HONcode, LIDA, Reading Ease, and Reading Grade Level). Two reviewers independently conducted the search, screen, and evaluation. Results: Of the 2093 websites identified, 115 were included. Overall, sites covered a mean (SD) of 29% (17.8) of the CKD content areas. The proportion of sites covering content related to understanding CKD, symptoms, and diet was highest (97%, 80%, and 72%, respectively). The proportion of sites covering travel, finances, and work/school content was lowest (22%, 12%, and 12%, respectively). The mean (SD) scores for DISCERN, LIDA and HONcode were 68% (14.6), 71% (14.4), and 75% (17.2), respectively, considered above average for usability and reliability. The mean (SD) Reading Grade Level was 10.6 (2.8) and Reading Ease was 49.8 (14.4), suggesting poor readability. Conclusions: Although many CKD web sites were of reasonable quality, their readability was poor. Furthermore, most sites covered less than 30% of the content patients identified as important for CKD self-management. These results will inform content gaps in internet-accessible information on CKD self-management that should be addressed by future eHealth web-based tools.
Background: There is limited research of electronic tools for self-management for patients with chronic kidney disease (CKD). We sought to evaluate participant engagement, perceived self-efficacy and website usage in a preliminary evaluation of My Kidneys My Health, a patient-facing eHealth tool in Canada. Methods: We conducted an explanatory sequential mixed-methods study of adults with CKD who were not on kidney replacement therapy and who had access to My Kidneys My Health for 8 weeks. Outcomes included acceptance (measured by the Technology Acceptance Model), self-efficacy (measured by the Chronic Disease Self-Efficacy Scale [CDSES]) and website usage patterns (captured using Google Analytics). We analyzed participant interviews using qualitative content analysis. Results: Twenty-nine participants with CKD completed baseline questionnaires, of whom 22 completed end-of-study questionnaires; data saturation was achieved with 15 telephone interviews. Acceptance was high, with more than 70% of participants agreeing or strongly agreeing that the website was easy to use and useful. Of the 22 who completed end-of-study questionnaires, 18 (82%) indicated they would recommend its use to others and 16 (73%) stated they would use the website in the future. Average scores for website satisfaction and look and feel were 7.7 (standard deviation [SD] 2.0) and 8.2 (SD 2.0) out of 10, respectively. The CDSES indicated that participants gained an increase in CKD information. Interviewed participants reported that the website offered valuable information and interactive tools for patients with early or newly diagnosed CKD, or for those experiencing changes in health status. Popular website pages and interactive features included Food and Diet, What is CKD, My Question List and the Depression Screener. Interpretation: Participants indicated that the My Kidneys My Health website provided accessible content and tools that may improve self-efficacy and support in CKD self-management. Further evaluation of the website’s effectiveness in supporting self-management among a larger, more heterogenous population is warranted.
Bilateral and synchronic testicular tumor is an unfrequent fact (0,17% of germinative tumors of testicle), being most cases seminomas. We present the case of a male, 25-year old patient underwent a bilateral radical orchiectomy for bilateral and synchronic testicular tumor. The result of anatomopathological examination revealed bilateral seminoma (pT2 in both testes). Patient received four courses of adjuvant chemotherapy (etoposide and cisplatin) for metastases (N2, M1). The patient is without evidence of disease two years after orchiectomy.
The T and the histological grade of the primary lesion must be considered when deciding the approach in the management of the lymph nodes as unneccesary lymphadenectomy can be avoided and those at high risk of lymph node invasion can be treated radically and timely.
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