Patient Knowledge Of Disease Research Articles

Sharing decision-making in knee osteoarthritis using the AHP-FMCGP method

This study presents a clinical treatment decision support system (CTDSS) through which clinicians can simplify the shared-decision making (SDM) process for treating knee osteoarthritis (OA). This system enables patients to participate in selecting the optimum treatment. There has been broad international acceptance of SDM, but its practical implementation in clinical setting has posed challenges. The proposed method incorporates analytic hierarchy process and fuzzy multi-choice goal programming (AHP-FMCGP) into CTDSS to determine treatment standards, beginning with a literature review and expert surveys. The method provides patients with flexibility to modify treatment goals and constraints during the decision-making (DM) process to achieve their preferred treatment and simplifying the traditional SDM. A total of 240 knee OA patients participated in this pilot study, and the results indicated a significant improvement in patient satisfaction (F = 4.104; P < 0.05) with the implementation of CTDSS. This study demonstrates the effectiveness of CTDSS by resolving several challenges in clinical implementation: (1) Improved efficiency of implementing SDM, promoting better clinician-patient communication and higher healthcare quality. (2) Eliminating the need for extensive health literacy and disease knowledge in patients during the DM process. (3) Saving time for physicians, by allowing them to better understand the patients’ preferences and select the most appropriate treatment option. (4) This method can be extended to primary clinics to benefit other patients.

Family Knowledge, Attitudes, and Practices Toward Severe Congenital Neutropenia.

Severe congenital neutropenia is a rare disorder. The survival and quality of life of patients radically improved through infection prevention, use of granulocyte colony-stimulating factor, and the appropriate use of antibiotics during infections. The aim of this study was to evaluate the precautions taken by families to prevent infections, the level of knowledge regarding the disease, and the impact of external factors such as education and economic status on behavior and compliance in patients and caregivers in terms of the following treatment protocols. Questionnaires were designed with the aim of determining how the social, cultural, and economic conditions of the families of children with severe congenital neutropenia affected their behavior and knowledge levels. They were completed using one-on-one video interviews with the caregivers. Thirty-one patients from 25 families were enrolled into the study. No correlations between family disease knowledge, parent education levels, working status of the mother, sibling numbers, economic status, ease of hospital access, and/or residential location were found. An increase in disease knowledge of patients and caregivers, as well as proven approaches to living with the disease, would directly correlate to increased life quality and long-term survival rates of patients.

The effectiveness and usability of a novel mobile phone-based self-care intervention for patients with heart failure: a mixed-methods pilot study.

To evaluate the preliminary effectiveness and usability of a novel mobile phone-based self-care intervention (named WithUs) for patients with heart failure (HF). We conducted a mixed-methods pilot study with group pre-test-post-test design and usability testing. Participants were 26 Korean HF patients (20 men; median age 62 years) who took part in this study after hospital discharge. Data were collected at baseline and after the 24-week intervention, using questionnaires and interviews. The outcome variables were eHealth literacy, disease knowledge, and self-care behaviours. The Wilcoxon signed-rank test was used to compare the pre- and post-intervention results. Thematic analysis was used for analysing qualitative data. The WithUs programme improved the eHealth literacy (P = 0.005), disease knowledge (P < 0.001), and self-care behaviours (P < 0.001) of patients with HF. The median score of total app usability was 4.1 out of 5 (interquartile range = 4.0-5.0). Four themes were identified which complemented the quantitative results. These were increased awareness of the importance of routine self-care behaviours, enhanced motivation toward self-care behaviours, challenges adapting to the new app, and suggestions for improving app adoption. The app was effective in improving adherence to self-care behaviours, eHealth literacy, and disease knowledge in patients with HF. The usability evaluation results showed that the app is usable and has the potential to support HF patients in self-care. However, the app needs to be modified to improve its adoption.

GRAPES: Trivia game increases sickle cell disease knowledge in patients and providers and mitigates healthcare biases.

Patients with sickle cell disease (SCD) endure healthcare biases that are partially due to a lack of disease-specific education among healthcare providers. Furthermore, there is a paucity of age-appropriate health education materials for patients with SCD. To address this gap, we created the GRAPES tool (Game to Raise Awareness for Patient/Provider/Public Education of SCD; www.tinyurl.com/GRAPESgame) and hypothesized that utilization of the GRAPES tool will improve patient and provider SCD knowledge and mitigate healthcare bias. The GRAPES tool is an online, single-player trivia game. A feasibility study was conducted in pediatric patients with SCD at age 10 years or older and registered nurses. All participants were assessed for change in SCD-relevant knowledge and satisfaction post-gameplay. Providers were assessed for change in attitudes toward patients with SCD post-gameplay. Twenty-five patients and 25 providers were enrolled. All participants (P<0.001), and specifically within the patient (P=0.019) and provider (P<0.001) cohorts, showed increased SCD knowledge post-gameplay. Both patients and providers reported high satisfaction with GRAPES. Provider negative attitudes were reduced (P=0.007) post-gameplay without change in positive attitudes (P=0.959). Providers demonstrated post-gameplay reduced (P=0.001) belief that patients' changing behavior around providers indicates inappropriate drug-seeking behavior. This study demonstrates the feasibility and acceptability of the GRAPES tool as a potential digital, behavioral intervention to provide educational materials for patients and their providers in different clinical settings, improve knowledge about SCD, and decrease stigma against patients with SCD in the healthcare setting.

A Multicentre Randomised Controlled Study Evaluating the Effect of a Standardised Education Programme on Quality of Life, Disease Severity, and Disease Knowledge in Patients with Moderate-To-Severe Psoriasis: The EDUPSO Study

Background: Psoriasis is a chronic inflammatory skin disease that has a profound effect on health-related quality of life (HRQoL). Patient education programmes may help patients to gain life-long control over their chronic disease. Objective: This multicentre randomised controlled study evaluated whether a standardised multidisciplinary education programme was beneficial to psoriasis patients. Methods: Adults with moderate-to-severe psoriasis were randomly assigned (1:1) to an intervention group to receive an educational programme or to a control group to receive usual care. Randomization was stratified by previous treatment history. The primary outcome was HRQoL, assessed by scoring the Skindex-29 domains emotion, symptom, and functioning. Psoriasis severity was assessed using the psoriasis area severity index (PASI). Levels of perceived stress, patient knowledge about psoriasis, and patient satisfaction were also assessed. Follow-up evaluations were performed at 3, 6, and 12 months. Results: A total 142 patients formed the intention-to-treat population: 70 in the control group and 72 in the intervention group. Skindex component scores and the PASI were significantly lower at 3, 6, and 12 months as compared to baseline in both groups, but no significant differences were found between the groups. Knowledge about psoriasis improved significantly during follow-up amongst patients from the intervention group compared to controls (68% of correct answers vs. 56%; p < 0.01). Patient satisfaction with psoriasis management and treatment was also better in the intervention group. Conclusions: The standardised education programme did not improve HRQoL and disease severity in psoriasis, but led to a significant improvement in patient knowledge about the disease and increased patient satisfaction.

Explaining juvenile idiopathic arthritis to paediatric patients using illustrations and easy-to-read texts: improvement of disease knowledge and adherence to treatment

IntroductionJuvenile idiopathic arthritis (JIA) is the leading chronic rheumatic disease in childhood. To achieve adherence to therapy, in-depth understanding of disease and treatment options are important.ObjectiveDevelopment of specifically designed illustrations and standardised, easy-to-read texts for children and adolescents with JIA. Education materials were tested for comprehensibility and content validity. We hypothesised that children would be able to increase their knowledge about JIA after presentation of materials.MethodsThe illustrations were designed by a graphic artist and the informative texts consecutively transformed to easy-to-read language. The materials appear as a modular system to allow individualized information for each patient.The illustrations and texts were tested for knowledge gain and improvement of self-efficacy in children affected by JIA/ rheumatic diseases and controls. Health-related quality of life (HRQoL) was tested as an overall assessment of patients’ well-being.Results46 controls (71% female) and 38 patients (48% female) with a median age of 11 years were tested in a standardised setting. In both groups knowledge gain was significant (controls: t (44) = 11.08, p < 0.001, d = 1.65; patients: t (37) = 7.48, p < 0.001, d = 1.21). The control group had a significantly higher enhancement of disease knowledge compared to patients’ group (p = .046) The follow-up testing was only performed in one school class (20 controls) due to Covid-19 pandemic with significant improvement compared to the pre-test results (p = .002).The enhancement of self-efficacy through the teaching session was significantly higher in the patients’ group. No impairment of HRQoL was seen.ConclusionExplaining juvenile rheumatic diseases and therapeutic strategies is an important task in paediatric rheumatology. To avoid incomprehensible explanations in medical jargon, illustrations and easy-to-read texts were developed. Standardised presentation of the newly created materials resulted in a significant improvement of disease knowledge in patients and controls in addition to an enhancement of self-efficacy in patients.

Grapes: Trivia Game Increases Sickle Cell Disease Knowledge in Patients and Providers and Mitigates Health Biases

IntroductionPediatric patients with sickle cell disease (SCD) face racial bias and healthcare stigma compounded by limited age-appropriate health education. Due in part to a lack of dedicated SCD education, providers can hold misconceptions about SCD and biases against patients. Gamification improves disease education and mitigates stigma in various clinical settings. In this study, we created the GRAPES tool (Game to Raise Awareness for Patient/Provider/Public Education of SCD, www.tinyurl.com/GRAPESgame), a free, online, trivia-based educational game. We hypothesized that utilization of the GRAPES tool will improve patient and provider SCD knowledge and mitigate SCD stigma among providers.MethodsThe GRAPES tool is a single-player, interactive game developed using Figma, a collaborative user-interface design software. Multiple-choice questions are structured into five educational modules (science, treatment, epidemiology, myths, and symptoms) with customizable red blood cell characters and hand-drawn screens to promote user-friendliness. Hyperlinked resources and an answer booklet provide further education. To promote health literacy for users of all ages, especially children, content is written at a fifth-grade Lexile level.The GRAPES tool was tested in two cohorts at St. Louis Children's Hospital: 1) pediatric patients 10 years of age or older with any genotype of SCD and 2) registered nurses at any career stage who care for patients with SCD. Both cohorts completed a 20-question, multiple-choice knowledge questionnaire pre- and post-gameplay to assess knowledge gains. Provider healthcare experiences were assessed pre- and post-gameplay through the 17-item short-form General Perceptions About Sickle Cell Patients Scale (GPASPS, Haywood et al., 2010). Post-gameplay, both cohorts completed a satisfaction scale and provided written feedback for game improvement. Non-parametric testing was used to compare paired-sample pre- and post-assessments.ResultsOf the 29 pediatric hematology-oncology nurses approached, 25 nurses (18 inpatient, 7 outpatient) were recruited. 49 patients with SCD were approached, and 25 patients (20 HbSS, 2 HbSβ 0, 1 HbSC, 1 HbSβ +, 1 HPHF) consented (Table 1). Four of the patients with SCD had prior curative hematopoietic stem cell transplants. The providers worked in the nursing field for a median of 6.0 [IQR 3.0-9.0] years.Recruited participants completed all study activities, including pre- and post-gameplay assessments. Patients with SCD completed the game with a median time of 17.0 [IQR 11.5-20.5] minutes. With data from 12 providers, the median gameplay time was 12.5 [IQR 10.0-16.5] minutes. All participants (p < 0.001), including within the provider (p < 0.001) and patient (p = 0.019) cohorts, showed increase in knowledge after gameplay (Fig. 1).Both providers and patients indicated the game was of high quality and relevance (Table 2). Patients wrote: “It was helpful to know about my sickness. The treatment part was helpful,” and, “The terms were helpful because I didn't know them before.” One provider wrote, “I liked how there were helpful links that I could click on for more info.” Some suggestions for improvement included an introductory slide about SCD and a back button.Provider negative attitudes (Q1-6, Fig. 2) were reduced (p = 0.0072) post-gameplay, but positive attitudes did not significantly change (Q7-10, Fig. 2). Providers also showed a significant decrease (p=0.0014) in the belief that patients changing their behavior around providers indicates inappropriate drug-seeking behavior (Fig. 3).ConclusionPatients and providers demonstrated significant improvement in SCD knowledge after playing GRAPES. Providers also held reduced negative attitudes towards patients with SCD post-gameplay. In the context of positive feedback from both cohorts, this study demonstrates the feasibility and acceptability of the GRAPES tool as a potential digital, behavioral intervention to decrease stigma against SCD patients and provide engaging educational materials for patients and their providers in different clinical settings. Our GRAPES tool won first prize in the 2021 NHLBI Hope for SCD Challenge (www.tinyurl.com/NIHgrapes). We are excited to continue evaluating the benefits of the GRAPES tool in a larger multi-institutional study and collaborate with the NHLBI for future dissemination among patients, families, and providers. [Display omitted] DisclosuresBadawy: Vertex Pharmaceuticals Inc: Consultancy; Bluebird Bio Inc: Consultancy; Sanofi Genzyme: Consultancy. Fields: Global Blood Therapeutics: Consultancy; Proclara Biosciences: Current equity holder in publicly-traded company.

Mobile Health, Disease Knowledge, and Self-Care Behavior in Chronic Kidney Disease: A Prospective Cohort Study

Mobile health (mHealth) management is an emerging strategy of care for patients with chronic diseases. However, the effect of mHealth management on clinical outcomes of patients with chronic kidney disease (CKD) has not been well-studied. The aim of this study was to investigate the additional influence of mHealth on disease knowledge and self-care behavior in CKD patients who had received traditional education. We designed and developed a new healthcare mobile application, called iCKD, which has several major features, including home-based physiological signal monitoring, disease health education, nutrition analysis, medication reminder, and alarms and a warning system. Trained nurses interviewed patients with CKD using structured questionnaires of disease knowledge and self-care behavior. After propensity score matching, we analyzed 107 patients who used iCKD and traditional education, and 107 who received traditional education. The patients who used iCKD had higher disease knowledge scores than those who received traditional education. In multivariate analysis, iCKD was significantly and positively associated with disease knowledge scores. Patients with high education levels could have greater disease knowledge through using mHealth. There was no significant difference in total scores of self-care behavior between the two groups. In conclusion, mHealth can significantly increase disease knowledge in patients with CKD.

Diabetes self-care practice and disease knowledge in patients with type 2 diabetes mellitus: A cross-sectional analysis with respect to age, educational attainment, income class and ongoing anti-diabetic treatments

Objective: To evaluate diabetes self-care practice and disease knowledge in type 2 diabetes mellitus (T2D) patients with respect to age, educational attainment, income class and antidiabetic treatments. Methods: A total of 583 patients with T2D (mean (SD) age: 57.3 (9.5) years, 55.9% females) were included in this cross-sectional study. Data on sociodemographic characteristics, diabetes characteristics (duration, current treatment), diabetes self-care practice [forgetting to take anti-diabetic medication, discontinuation of treatment due to side effects, self-monitoring of blood glucose (SMBG), diabetes education and regular exercise] and disease knowledge (definition and target levels of HbA1c, hypoglycemia symptoms and diabetes-related complications) were recorded. Results: Overall, HbA1c levels were &gt;8% in 53.2% of patients, 38.3% of patients reported that they had no diabetes education, while at least twice daily SMBG and regular exercise was reported by 27.4% and 19.7% of patients, respectively. Lack of knowledge on definition and target levels of HbA1c was noted in up to 65.5% of patients, while majority of patients reported that they know hypoglycemia symptoms (89.2%) and diabetes-related complications (86.4%). Illiteracy was associated with higher likelihood of treatment discontinuation (p&lt;0.001) and with lesser likelihood of performing regular exercise (10.3 vs. 32.8%, p&lt;0.001). Older patient age, lower educational attainment and lower income level were associated with lesser likelihood of knowing the definition or target levels of HbA1c (p&lt;0.001 for each) and sexual complications of diabetes (p&lt;0.001, p&lt;0.001 and p=0.028, respectively). Knowing diabetes-related complications were less common in those with lower educational attainment (p&lt;0.001) and lower income level (p=0.010), while insulin-naïve patients were less likely to know hypoglycemia symptoms (p=0.010). Conclusion: In conclusion, our findings revealed poor glycemic control, low level of knowledge on definition and targets of HbA1c and lack of diabetes education with suboptimal adherence to self-care practice in a considerable percentage of patients. Disease knowledge but not SMBG practice significantly differed with respect to patient age, educational attainment, income class and treatment. Our findings seem to indicate lower disease-related insight among older patients and those with lower educational and income levels, emphasizing the potential role of individualized diabetes education interventions tailored to needs of patients to improve disease knowledge and thus the adherence to self-care practice in T2D patients.

Patient disease knowledge, attitudes and behaviours related to non-alcoholic fatty liver disease: a qualitative study

ObjectiveDespite clear evidence that weight loss via nutritional and physical activity changes improves histological outcomes in non-alcoholic fatty liver disease (NAFLD), many patients struggle to implement and maintain these health...

Disease Knowledge, Health-Related Quality of Life, and Lifestyle Behavior Change in Patients with Nonalcoholic Fatty Liver Disease: Impact of an Educational Intervention.

Lifestyle modification is currently the only treatment for nonalcoholic fatty liver disease (NAFLD). The most effective way to motivate behavior change in this population is not well understood. The aims of this study were to characterize the association between patient disease knowledge, attitudes, and behaviors and to determine the impact of an educational intervention. Adults with NAFLD had the following assessed before and after an educational intervention: (1) disease knowledge; (2) health-related quality of life (HRQOL); (3) physical activity; (4) diet; (5) stages of change; and (6) clinical variables. Median age of the cohort (N = 248) was 53.5, 46% were male, 85% were white, and median body mass index was 33.9. Forty-eight percentage had nonalcoholic steatohepatitis, and 28% had cirrhosis. The median correct knowledge score was 73.6%, median Chronic Liver Disease Questionnaire-NAFLD was 5.2/7, and diet score was 7/16 (higher indicating unhealthy diets). The cohort was sedentary at baseline, with 46% and 60% in active phases of change for nutrition and physical activity, respectively. Fifty-six (22%) had all three high-risk behaviors (sedentary, poor diet scores, low stage of change), which was independently associated with depression. The educational intervention improved diet scores, HRQOL, stages of change, and weight. Despite good disease knowledge, NAFLD participants were sedentary and 1/4 had high-risk lifestyle behaviors. An educational intervention had positive impacts on clinical outcomes, though effect size was small. Pairing educational interventions with targeted interventions to motivate behavior change can improve care for patients with NAFLD.

Improving Transition to Adult Care for Those With Developmental Disabilities: An Unclear Path.

In this issue of Pediatrics , Levy et al1 present a systematic review focused on the transition from pediatric to adult care for adolescents and young adults with neurodevelopmental disabilities. The transition from pediatric to adult health care is a challenge for patients with neurodevelopmental disabilities and their families.2–4 Patients are not only changing from pediatric to adult health systems but also working on such things as getting the appropriate educational supports in college, applying for disability (if appropriate), or finding services for adults to replace the support services provided in the school setting. With this review, Levy et al1 sought to identify those interventions that providers and systems can use to support families during this difficult process, ultimately concluding that although interventions may help with transition readiness and patient disease knowledge, the data are limited, especially with respect to patient quality of life, the primary outcome of interest in this review. The review by Levy et al1 is notable for its expansive consideration of transition interventions. The interventions themselves could consist of a specialized transition clinic, educational materials, a formal transition curriculum, or … Address correspondence to Laura C. Hart, MD, MPH, Nationwide Children’s Hospital, 700 Children’s Drive, Columbus, OH 43205. E-mail: laura.hart{at}nationwidechildrens.org

Influence of transitional care on the self-care ability of kidney transplant recipients after discharge.

Renal transplantation is the optimal treatment for end-stage renal diseases. However, low self-care ability after discharge seriously reduces the postoperative quality of life and decreases the survival of both patients and grafts. Transitional care entails a broad range of services designed to ensure health care continuity from hospital to home. Continuous nursing service for patients with kidney transplantation can meet the nursing needs of patients, heighten patients' disease knowledge and self-care ability, guarantee patients' quality of life, and improve the survival rate of the kidney and patient in general. A total of 100 kidney transplant recipients were enrolled by using a simple random sampling method. A transitional care team was established to offer transitional care to the discharged patients via telephone calls, outpatient visits, family visits, and kidney transplant patients' clubs. The self-designed disease knowledge questionnaire and the exercise of self-care agency (ESCA) scale were used to evaluate and compare the patients' conditions before and after the implementation of transitional care. The patient's knowledge about self-monitoring, correct medication, reasonable diet, and proper exercise, along with their self-care abilities, were significantly improved after the implementation of transitional care (all P<0.05). Transitional care can improve the patient's disease knowledge and self-care ability and thus increase the patient's quality of life.

Analysis on the influencing factors of knowledge acquisition in patients with coronary heart disease after receiving iPad video health education

Objective To explore the influence of relevant factors of patients on the degree of disease knowledge after using mobile iPad for health education of coronary heart disease inpatients, so as to provide more effective health education for coronary heart disease inpatients with different population characteristics. Methods A total of 97 adult CHD patients were randomly admitted to the first ward (control group) and the second ward (observation group) of the department of cardiology.The routine health education methods and contents of the two groups of patients were the same. The control group was given paper health education materials, and the observation group made the health education contents into iPad video playlists for the patients to choose and learn by themselves.When the patients were discharged from the hospital, the coronary heart disease knowledge questionnaire (PKS-CHD) was used to evaluate the patients' cognition level of the disease, and the knowledge mastery degree of the patients in the two groups was compared and analyzed to explore the self-related factors influencing the knowledge mastery degree of the patients in the observation group. Results The knowledge score of CHD in the observation group was higher than that in the control group, and the difference was statistically significant(P<0.05). In the observation group, the degree of education and the classification of cardiac function were the main factors influencing the degree of knowledge mastery of patients. The higher the degree of education, the higher the degree of knowledge mastery of patients with higher cardiac function classification. Conclusions Compared with paper health education materials, iPad health education is more helpful to improve the mastery of disease knowledge of patients with coronary heart disease. Patients with higher education level and higher heart function classification have better acceptance of iPad health education. Key words: Coronary heart disease; Health education

Perceived and Objective Kidney Disease Knowledge in Patients With Advanced CKD Followed in a Multidisciplinary CKD Clinic.

Background:One of the key components of multidisciplinary CKD clinics is education; however, kidney disease knowledge among patients followed in these clinics is not routinely measured.Objective:The aim of this study was to determine objective and perceived kidney disease knowledge and patient characteristics associated with knowledge among patients followed in a multi-care kidney clinic.Design:This is a cross-sectional survey study.Setting:This study was conducted in a multi-care kidney clinic in Ontario, Canada.Patients:Patients who did not speak English, who were unable to read due to significant vision impairment, or who had a known history of dementia or significant cognitive impairment were excluded.Measurements:Perceived kidney disease knowledge was evaluated using a previously validated 9-item survey (PiKS). Each question on the perceived knowledge survey had 4 possible responses, ranging from “I don’t know anything” (1) to “I know a lot” (4). Objective kidney disease knowledge was evaluated using a previously validated survey (KiKS).Methods:The association between patient characteristics and perceived and objective kidney disease knowledge was determined using linear regression.Results:A total of 125 patients were included, 57% were male, the mean (SD) age and eGFR were 66 (13) years and 16 (5.9) mL/min/1.73 m2, respectively. The median (IQR) objective and perceived knowledge survey scores were 19 out of 27 (16, 21) and 2.9 out of 4 (2.4, 3.2), respectively. Only 25% of patients answered correctly that CKD can be associated with no symptoms, and 64% of patients identified correctly that the kidneys make urine. More than 60% of patients perceived themselves to know nothing or only a little about medications that help or hurt the kidney. Older age was independently associated with lower perceived and objective knowledge, but sex, income, and educational attainment were not.Limitations:This is a single-center study. Cognitive impairment was based on the treating team’s informal assessment or prior documentation in the chart; formal cognitive testing was not performed as part of this study.Conclusions:Despite resource-intensive care, CKD knowledge of patients followed in a multidisciplinary clinic was found to be modest. Whether enhanced educational strategies can improve knowledge and whether increasing knowledge improves patient outcomes warrants further study.

Development and validation of a novel rheumatoid arthritis knowledge assessment scale in Pakistani patients with rheumatoid arthritis.

Rheumatoid arthritis (RA) is a chronic progressive disabling disease that mainly affects joints. Studies documenting Pakistani patients' knowledge regarding RA disease are lacking and there is a need for such endeavor. The purpose of this study was to develop and validate a novel research tool to document patient knowledge about RA disease. A novel research instrument known as the rheumatoid arthritis knowledge assessment scale (RAKAS) which consisted of 13 items, was formulated by a rheumatology panel and used for this study. This study was conducted in rheumatology clinics of three tertiary care hospitals in Karachi, Pakistan. The study was conducted in March-April 2018. Patients were recruited using a randomized computer-generated list of appointments. Sample size was calculated based on item-to-respondent ratio of 1:15. The validities, factor structure, sensitivity, reliability and internal consistency of RAKAS were assessed. The study was approved by the institutional Ethics Committee. A total of 263 patients responded to the study. Content validity was 0.93 and response rate was 89.6%. Factor analysis revealed a 3-factor structure. Fit indices, namely normed fit index (NFI), Tucker Lewis index (TLI), comparative fit index (CFI) and root mean square of error approximation (RMSEA) were calculated with satisfactory results, that is, NFI, TLI and CFI>0.9, and RMSEA<0.06. Internal consistency (α) was 0.62, that is, acceptable. All items had a high discrimination index, that is, >19 and difficulty index <0.95. Sensitivity and specificity of RAKAS were above 90%. The tool established construct and known group validities. A novel tool to document disease knowledge in patients with RA was formulated and validated.

The advantages of patient's active involvement in the management of chronic Inflammatory Bowel Diseases.

The patient's active involvement is an emerging hot-topic, which can be applied in to the management of chronic inflammatory bowel diseases (IBD). Since in this field most of the therapeutic strategies are not based on sturdy scientific evidences, the patient's role has become central and it is believed essential for any patients to have an active cognitive, behavioural and emotive profile. Moreover different patient's aspects should be considered, such as the patient's activation, the patient's engagement and the patient's disease knowledge. The initial evidences available on this topic within IBD context have showed how a higher patient's active profile and a deeper disease knowledge have had a positive effect on compliance, perceived health-care satisfaction, self-management and health costs. Therefore, considering the favourable outcomes so far highlighted, we hope that the evaluation of patient's involvement may become a standard procedure, allowing patients who need it to undergo active programmes which have proved to be effective in improving patient's degree of activation.

Examining Associations of Racial Residential Segregation With Patient Knowledge of Breast Cancer and Treatment Receipt

BackgroundThe effect of racial residential segregation on breast cancer treatment disparities is unclear. We examined whether racial segregation is associated with adjuvant treatment receipt and patient knowledge of disease. Patients and MethodsWe surveyed a population-based sample of women in Northern California with stage I to III breast cancer diagnosed in 2010 to 2011 (participation rate = 68.5%, 500 patients). For black, Hispanic, and white women, we measured black and Hispanic segregation using the location quotient (LQ) of racial residential segregation, a proportional measure of the size of a minority group in the census tract compared with the larger metropolitan statistical area. We categorized LQ values for black and Hispanic participants into quartiles, with quartile 1 representing a lower relative level of segregation than quartile 4. We used multivariable logistical regression to assess the odds of receiving guideline-recommended adjuvant therapy and patient knowledge of tumor characteristics according to relative residential segregation. ResultsWe observed greater residential segregation for black versus Hispanic patients (P < .05). Overall, there were no treatment differences according to Hispanic or black LQ, except for black LQ quartile 3 (vs. 1) for which we observed higher odds of hormonal therapy. Knowledge of disease did not vary according to black LQ, but patients in the Hispanic LQ quartile 3 (vs. quartile 1) had less tumor knowledge. ConclusionWe did not find clear associations for racial residential segregation and treatment or cancer knowledge in Northern California, an area with low levels of segregation. Additional research should assess the effect of segregation on breast cancer treatment disparities in a variety of geographical locations.

Online continuing medical education as a key link for successful noncommunicable disease self-management: the CASALUD™ Model.

PurposeThe purpose of this study is to evaluate how the benefits of online continuing medical education (CME) provided to health care professionals traveled along a patient “educational chain”. In this study, the educational chain begins with the influence that CME can have on the quality of health care, with subsequent influence on patient knowledge, disease self-management, and disease biomarkers.MethodsA total of 422 patients with at least one noncommunicable disease (NCD) treated in eight different Mexican public health clinics were followed over 3 years. All clinics were participants in the CASALUD Model, an NCD care model for primary care, where all clinic staff were offered CME. Data were collected through a questionnaire on health care, patient disease knowledge, and self-management behaviors; blood samples and anthropometric measurements were collected to measure patient disease biomarkers.ResultsBetween 2013 and 2015, the indexes measuring quality of health care, patient health knowledge, and diabetes self-management activities rose moderately but significantly (from 0.54 to 0.64, 0.80 to 0.84, and 0.62 to 0.67, respectively). Performing self-care activities – including owning and using a glucometer and belonging to a disease support group – saw the highest increase (from 0.65 to 0.75). A1C levels increased between 2013 and 2015 from 7.95 to 8.41% (63–68 mmol/mol) (P<0.001), and blood pressure decreased between 2014 and 2015 from 143.7/76.8 to 137.5/74.4 (systolic/diastolic reported in mmHg) (P<0.001). The mean levels of other disease biomarkers remained statistically unchanged, despite the improvements seen in the previous “links” of the educational chain.ConclusionOnline CME can effect certain changes in the educational chain linking quality of health care, patient knowledge, and self-management behaviors. However, in order to assure adequate NCD control, the entire health care system must be improved in tandem. Online CME programs, such as CASALUD’s, are feasible strategies for impacting changes in disease self-management at a clinic level throughout a country.

The Degree of Disease Knowledge in Patients with Gastroesophageal Reflux Disease: A Multi-center Prospective Study in Korea.

Background/AimsPatient education has been shown to be beneficial in several diseases. To properly educate patients with gastroesophageal reflux disease (GERD), it is necessary to understand how much they already know about their disease. However, no study has examined the degree of disease knowledge in Korean patients with GERD. Therefore, we conducted this study to assess the degree of knowledge in such patients.MethodsThis multicenter prospective study was conducted from January 2014 to January 2015. A total of 746 patients (mean age, 52 years; 57.6% female) were enrolled from 7 hospitals in Korea. Inclusion criteria were diagnosis of GERD and ability to properly complete a survey. Degree of disease knowledge was assessed using the translated, validated Korean Urnes questionnaire, which consists of 22 items related to GERD.ResultsMean percentage of correct answers was 46.3% and mean GERD knowledge score was 9.6. Degree of knowledge (mean percentage of correct answers) regarding etiology, prognosis, and treatment of GERD were 49.5%, 36.7%, and 37.5%, respectively. Degree of disease knowledge differed significantly according to age (P < 0.001), education (P < 0.001), income (P = 0.028), and occupation (P < 0.001). In multivariate analysis, using multiple logistic regression, the higher knowledge score group tended to have higher education and professional occupation.ConclusionsThe surveyed Korean patients had relatively low disease knowledge, suggesting that a GERD educational program may be beneficial in Korea. Formulation of a program is underway.