Diabetes Patients: Information Needs and Seeking Behaviors

Diabetes is currently the seventh leading cause of death in America. Currently, 9.3% of the American population has diabetes, and self-management is a crucial step in managing the disease well. Therefore, this community resource audit focuses on the information needs and seeking behaviors of these patients as they navigate life with diabetes

Information needs and oral epithelial dysplasia: development and psychometric evaluation of a novel instrument

Objectives: Oral epithelial dysplasia (OED) can lead to significant information needs (IN) related to the risk of cancer development, the need for long‐term monitoring and potential intervention. The present study aimed to develop and perform preliminary psychometric testing for a novel IN instrument specific to OED. / Subjects and methods: Patients diagnosed with OED were invited to complete the Oral Epithelial Dysplasia Informational Needs Questionnaire (ODIN‐Q), which was developed based on a known theoretical framework and with items generated via expert input and the literature. Face validity and content validity were initially assessed prior to finalisation of the tool. ODIN‐Q was tested for internal consistency and test–retest reliability along with construct validity. / Results: ODIN‐Q consists of 35 items, categorised under six domains, and rated by dual 4‐point Likert scales (amount of information received and degree of importance). Internal consistency (Cronbach's alpha) was rated “excellent” for the scale (0.93) and both subscales (0.92/0.94). For test–retest reliability, moderate agreement was found (κ = 0.49–0.53). Regarding construct validity, a significant but limited relationship was found between ODIN‐Q and the Krantz Health Opinion Survey. / Conclusion: ODIN‐Q showed adequate psychometric properties of reliability and validity. Further validation is, however, needed to assess its structural validity and responsiveness

Structured diabetes self-management education and its association with perceived diabetes knowledge, information, and disease distress: Results of a nationwide population-based study

Objective: To evaluate, how participation in structured diabetes self-management education (DSME) programs is associated with perceived level of knowledge about diabetes, information needs, information sources and disease distress. Methods: We included 796 ever- and 277 never-DSME participants of the population-based survey “Disease knowledge and information needs - Diabetes mellitus (2017)” from Germany. Data on perceived level of diabetes knowledge (12 items), information needs (11 items), information sources (13 items) and disease distress (2 indices) were collected. Multiple logistic regression analyses were used to examine the association of DSME-participation with these outcomes. Results: DSME-participants showed a higher level of diabetes knowledge compared to never-DSME participants, particularly in aspects concerning diabetes in general (odds ratio 2.53; 95% confidence intervals 1.48–4.33), treatment (2.41; 1.36–4.26), acute complications (1.91; 1.07–3.41) and diabetes in everyday life (1.83; 1.04–3.22). DSME-participants showed higher information needs regarding late complications (1.51; 1.04–2.18) and acute complications (1.71; 1.71–2.48) than DSME never participants. DSME-participants more frequently consulted diabetologists (5.54; 3.56–8.60) and diabetes care specialists (5.62; 3.61–8.75) as information sources. DSME participation was not associated with disease distress. Conclusion: DSME is a valuable tool for improving individual knowledge about diabetes. However, DSME should focus more on psychosocial aspects to reduce the disease burden

Customization options in consumer health information materials on type-2 diabetes mellitus—an analysis of modifiable features in different types of media

IntroductionThe understanding of health-related information is essential for making informed decisions. However, providing health information in an understandable format for everyone is challenging due to differences in consumers’ health status, disease knowledge, skills, and preferences. Tailoring health information to individual needs can improve comprehension and increase health literacy.ObjectiveThe aim of our research was to analyze the extent to which consumers can customize consumer health information materials (CHIMs) for type-2 diabetes mellitus through various media types.MethodsWe conducted a comprehensive search for various CHIMs across various media types, such as websites, apps, videos, and printed or printable forms. A representative sample of CHIMs was obtained for analysis through blocked randomization across the various media types. We conducted a quantitative content analysis to determine the frequency of user-centered customization options. Cross-comparisons were made to identify trends and variations in modifiable features among the media.ResultsIn our representative sample of 114 CHIMs, we identified a total of 24 modifiable features, which we grouped into five main categories: (i) language, (ii) text, (iii) audiovisual, (iv) presentation, and (v) medical content. Videos offered the most customization opportunities (95%), while 47% of websites and 26% of apps did not allow users to tailor health information. None of the printed or printable materials provided the option to customize the information. Overall, 65% of analyzed CHIMs did not allow users to tailor health information according to their needs.ConclusionOur results show that CHIMs for type-2 diabetes mellitus could be significantly improved by providing more customization options for users. Further research is needed to investigate the effectiveness and usability of these options to enhance the development and appropriate provision of modifiable features in health information

Preference for health information and decision-making autonomy among Chinese patients with T2DM in the mHealth era

This quantitative descriptive study explored preferences for health information and decision-making and for mobile health (mHealth) use in Chinese patients with type 2 diabetes (T2DM). Specific aims of this study were: to explore (1) individual preferences for the types and amounts of health information and decision-making autonomy among Chinese patients with T2DM; (2) their use of mobile technology in their self-management of the condition; and (3) the relationship between their use of mHealth and their preferences for health information and decision-making autonomy. The sample consisted of 200 Mandarin-speaking Chinese patients from 26 to 90 years of age (mean age 59.91; SD: 12.17) with T2DM and a mean of 7.4 years since diabetes diagnosis. Data were collected via a pen-and-paper survey questionnaire at a general hospital in Chengdu, the capital of Sichuan province, China. The survey questionnaire measured preferences for health information and decision-making autonomy and mHealth use. The study results provided empirical evidence that Chinese patients with T2DM wanted to have a wide range of health information and participation in decision-making. Gender, health status, and knowledge about the condition were associated with differences in information wanted and participation in decision-making, but age was not. Half (50.5%) of the participants used smartphones to access the Internet and look for health or medical information; 71% of participants used smartphones to receive/read health-related posts; and 24% of participants had at least one health-related application downloaded to their smartphones. Smartphone use frequency for health information and participation in decision-making had a statistically significant interaction, the strength of which varied across seven subscales (specific health condition, treatment, laboratory tests, self-management, complementary/alternative medicine, psychosocial aspects, and healthcare providers). The overall health information wanted had a positive relationship with using smartphones to receive health-related posts. This study has implications for research and clinical practice, especially given the shift from disease-centered to patient-centered care.Nursin

Designing patient education with distance learning

Background: Self-management is crucial among patients with diabetes. Increasing the levels of self-management may prevent patients from developing further complications related to their disease. Tailoring education to the patient needs, and providing them with follow-up education on the various topics of diabetes could significantly improve patient understanding. The inclusion of distance learning, and especially Massive Open Online Courses (MOOC), in diabetes education has not been significant though. What topics should a distance-learning platform focus on when offering patient education to type 2 diabetics? How do patients perceive such a platform? And what education method should be used to better reach patient understanding, ultimately helping diabetics to reach better self-management? Objective: Describing the needs and requirements of type 2 diabetics for the development of an online learning platform. The study tried to analyse what topics patients need follow-up education on to reach better self-management and how. The study wants to get an answer where patients would use a knowledge-driven decision support method inside the patient centric learning model Methods: A qualitative approach for this study included 6 participants, aged 30 to 65 years old. They were diagnosed with type 2 diabetes not earlier than 6 months before the start of this study and had no further diabetes related complications. They participated in an interview on the several topics related to diabetes, which identified where the need and requirements for education in is at. To help identify which topics patients wanted to receive follow-up education on the Diabetes Self-Management education (DSME) was used. The interview contained structured and unstructured questions, and was performed with a high level of involvement to provide relevant information related to diabetes throughout the interview. Results: Participants welcomed the idea of receiving education via an online learning platform. The incorporation of multimedia was highly recommended, and the method of receiving education was recommended to change per subject, not per topic. Overall, patient-centric learning was a preferred method in all topics, but knowledge-driven decision support was welcomed as an addition to some of the subjects. Conclusion: The current education offered is limited to providing basic understanding of performing self-management. Participants felt the need for follow-up education, but could not be provided with this. The proposed platform, with possibilities to access information whenever the patients needed, was seen as a welcomed addition to the current education offered in the different setups. Using patient-centric learning, combined with the integration of knowledge-driven decision support, could provide education and information whenever needed and benefit in increasing self-management levels among diabetics.Bakgrund: Självförvaltning är avgörande bland patienter med diabetes. Öka nivåerna av självförvaltning kan hindra patienter från att utveckla ytterligare komplikationer i samband med sin sjukdom. Skräddarsy utbildning till patientens behov och ge dem med uppföljning utbildning om olika ämnen av diabetes skulle avsevärt förbättra patient förståelse. Införandet av distansundervisning, och särskilt Massive Öppna onlinekurser (MOOC), i diabetesutbildning har inte varit betydande men. Vilka ämnen bör en distansutbildning plattform fokuserar på när de erbjuder patientutbildning till typ 2 diabetiker? Hur gör patienterna upplever en sådan plattform? Och vilken utbildning metod bör användas för att bättre nå patienten förståelse, i slutändan hjälpa diabetiker att nå en bättre självförvaltning? Syfte: Att beskriva de behov och krav av denna typ 2-diabetiker för utveckling av ett online-lärande plattform. Studien försökte analysera vilka ämnen patienter behöver följa upp utbildningen på att nå en bättre självförvaltning och hur. Studien vill få ett svar där skulle patienter använder en kunskapsstyrd beslutsstödsmetoden inuti patienten centrerad lärande modell metoder: En kvalitativ metod för denna studie ingick 6 deltagare i åldern 30 till 65 år gamla. De diagnosen typ 2-diabetes tidigast 6 månader innan denna studie och hade inga ytterligare diabetes relaterade komplikationer. De deltog i en intervju på flera ämnen relaterade till diabetes, som identifierats där behovet av och krav på utbildning är. För att identifiera vilka ämnen patienter ville få uppföljande utbildning om Diabetes Självledarskapsutbildning (DSME) användes. Intervjun innehöll strukturerade och ostrukturerade frågor, och utfördes med en hög grad av engagemang för att ge relevant information i samband med diabetes under hela intervjun. Resultat: Deltagarna välkomnade idén att ta emot undervisning via en online-lärande plattform. Införlivandet av multimedia var rekommenderas, och metoden för att ta emot utbildning rekommenderades att ändra per ämne, inte per ämne. Sammantaget patientcentrerade lärande var en föredragen metod i alla ämnen, men kunskapsdriven beslutsunderlag välkomnades som ett tillägg till några av ämnena. Slutsats: Den nuvarande utbildning som erbjuds är begränsad till att ge grundläggande förståelse för att utföra egenvård. Deltagarna kände behovet av uppföljande utbildning, men kunde inte förses med detta. Den föreslagna plattformen, med möjligheter att få tillgång till information när patienterna behövde, sågs som ett välkommet tillskott till den aktuella utbildningen erbjuds i olika inställningar. Använda patientcentrerad lärande, i kombination med integration av kunskapsstyrd beslutsunderlag, kan ge utbildning och information när det behövs och dra för att öka självchefsnivåer bland diabetiker

mHealth: opportunities and challenges for diabetes intervention research

Background: Traditionally, health intervention evaluations provide long-term evidence of efficacy and safety via validated protocols, following a positivist paradigm, or approach, to research. However, modern mobile health (mHealth) technologies develop too quickly and outside of medical regulation, making it challenging for health research to keep pace. Objective: This thesis explored and tested how research can incorporate mHealth approaches and resources to evaluate mHealth interventions comprehensively, which follows the pragmatism paradigm. The works described herein were part of a larger project that designed, developed, and tested a data-sharing system between patients and their healthcare providers (HCPs) during diabetes consultations. Methods: The pragmatism paradigm underpins the mixed-methods, multi-phase design approach to exploring this overall objective. The following methods were performed using a sequential exploratory strategy. First, co-design workshops invited individuals with diabetes and HCPs to design an mHealth data-sharing system. Next, a scoping literature review identified research practices for evaluating mHealth interventions to-date. Then, app usage-logs, collected from a previous longitudinal study, were analyzed to explore how much additional information they could provide about patients’ self-management. Finally, a mixed-method study was designed to test the feasibility of combining both traditional and mHealth approaches and resources to evaluate an intervention. Results: Using the pragmatist paradigm as a scaffolding, these works provide evidence of how research can provide more comprehensive knowledge about mHealth interventions for diabetes care and self-management. Nine individuals with diabetes and six HCPs participated in the co-design workshops. Feedback included how a data-sharing system should work between patients and providers. The literature review identified how both traditional and mHealth-based approaches (n=15 methods, n=21 measures) were used together to evaluate mHealth interventions. Usage-log analysis revealed that changes in Glycosylated haemoglobin (HbA1c) differed between groups organized by usage patterns and duration of use of mHealth. The mixed-method study demonstrated how to collect comprehensive and complementary information when combining traditional and mHealth-centered approaches and resources. Conclusion: Traditional positivist approaches and resources are not adequate, on their own, to comprehensively understand the impact of mHealth interventions. The presented studies demonstrate that it is both feasible and prudent to combine traditional research with mHealth approaches, such as analyzing usage-logs, arranging co-design workshops, and other patient-centered methods in a pragmatist approach to produce comprehensive evidence of mHealth’s impacts on both patients and HCPs