Disease-specific Information Research Articles

Time Series Regression in Aquaculture

Time Series Regression in Aquaculture

Future of the Smartphone for Patients and Healthcare Providers.

Future of the Smartphone for Patients and Healthcare Providers.

PEP-on-DEP: A competitive peptide-based disposable electrochemical aptasensor for renin diagnostics

Antibody-based immunosensors are relatively less accessible to a wide variety of unreachable targets, such as low-molecular-weight biomarkers that represent a rich untapped source of disease-specific diagnostic information. Here, we present a peptide aptamer-based electrochemical sensor technology called ‘PEP-on-DEP’ to detect less accessible target molecules, such as renin, and to improve the quality of life. Peptide-based aptamers represent a relatively smart class of affinity binders and show great promise in biosensor development. Renin is involved in the regulation of arterial blood pressure and is an emerging biomarker protein for predicting cardiovascular risk and prognosis. To our knowledge, no studies have described aptamer molecules that can be used as new potent probes for renin. Here, we describe a portable electrochemical biosensor platform based on the newly identified peptide aptamer molecules for renin. We constructed a randomized octapeptide library pool with diversified sequences and selected renin specific peptide aptamers using cDNA display technology. We identified a few peptide aptamer sequences with a KD in the µM binding affinity range for renin. Next, we grafted the selected peptide aptamers onto gold nanoparticles and detected renin in a one-step competitive assay using our originally developed DEP (Disposable Electrochemical Printed) chip and a USB powered portable potentiostat system. We successfully detected renin in as little as 300ngmL−1 using the PEP-on-DEP method. Thus, the generation and characterization of novel probes for unreachable target molecules by merging a newly identified peptide aptamer with electrochemical transduction allowed for the development of a more practical biosensor that, in principle, can be adapted to develop a portable, low-cost and mass-producible biosensor for point-of-care applications.

The impact of self-efficacy on physical activity maintenance in patients with hip osteoarthritis – a mixed methods study

Purpose: Understanding motivational factors related to physical activity (PA) maintenance is essential in promoting long-term exercise benefits. This study explored the impact of self-efficacy (SE) on post-intervention PA maintenance in patients with hip osteoarthritis. Method: An SE-theory based mixed-methods sub-study of a trial investigating the effects of 4 months supervised exercise in patients with hip osteoarthritis. Questionnaire data (n = 52; baseline and 12 months) on PA and SE (Arthritis Self-Efficacy Scale, ASES, score-range 10–100) were analysed (Mann–Whitney test) for differences in characteristics of maintainers and non-maintainers. Semi-structured individual interviews (n = 15; at 12-months follow-up) were analysed using directed content analysis. Results: Compared to non-maintainers (n = 9; 17%) maintainers (n = 31; 60%) had improved (p < 0.01) in median scores of ASES (Pain: +12 versus −32 points; Function: +7 versus −9 points; Other Symptoms: +11 versus −26 points) from baseline to 12 months. Experiences of possessing required skills, inspiration by other participants, encouragement from physical therapists and altered interpretations of PA-induced physiological conditions contributed to increased SE and PA maintenance. Moreover, experienced symptoms, exercise outcome expectations and obligation towards the study influenced maintenance. Conclusion: SE contributes to understanding of post-intervention PA maintenance in patients with hip osteoarthritis. However, disease-related factors and clinical trial participation appears significant too. Implications for RehabilitationPatients’ perceived self-efficacy for physical activity contributes to the understanding of post-intervention physical activity maintenance in patients with hip osteoarthritis.Practitioners may benefit from incorporating the self-efficacy theory in the planning and execution of exercise interventions to promote post-intervention physical activity maintenance and long term health benefits.Post-intervention physical activity maintenance may be increased by focussing on the patients’ exercise self-efficacy through verbal persuasion and support, disease-specific information and information on normal physiological responses to exercise combined with an individualised training progression to support experiences of success and achievement of desired outcomes.

A Qualitative Study of Vulnerable Patient Views of Type 2 Diabetes Consumer Reports.

The Patient Protection and Affordable Care Act (ACA) mandates the release of publicly available consumer reports to highlight differences in quality of care and reduce healthcare disparities. However, little is known about patient perceptions of the value of such reports. This study aims to identify whether vulnerable populations with type 2 diabetes perceive consumer reports as helpful in making decisions about diabetes care. We conducted a brief demographic survey and qualitative study of 18 focus groups: six each of African American, Hispanic, and non-Hispanic White consumers diagnosed with type 2 diabetes (n=92). We analysed focus group transcripts to identify recurring themes, which were summarized and compared across population groups. Participants expressed minimal interest in currently available consumer reports. They instead listed personal referrals and interpersonal interactions among the most important factors when choosing a physician. Further, in place of information to aid in physician selection, participants articulated strong desires for more basic, straightforward disease-specific information that would promote diabetes self-management. This study's results call into question the value of consumer reports as defined by the ACA. Participants reported little interest in comparative provider performance data. Instead, they were more interested in information to assist in diabetes self-management. This suggests that consumer reports may not be as important a tool to improve outcomes and reduce health disparities as policy makers imagine them to be.

QOL-17IMPROVING THE CARE OF THE CAREGIVER: FINE TUNING A NEURO ONCOLOGY CAREGIVER PROGRAM

BACKGROUND: It is well documented that caregivers (CG) of neuro oncology patients have multiple needs across the disease trajectory. In September of 2013, the UCSF Neuro Oncology Program launched a service to proactively address the needs of the CG. The intent was to provide disease specific information, improve access to disease specific resources, and establish connections with others CGs in similar situations across the disease trajectory. We report on the expressed needs of 209 CGs and identified areas to fine tune the program. METHODS: CG outreach allowed for needs to be assessed across various domains. Following an analysis of the timing and nature of these expressed needs, we identified strategies and interventions to address these needs. RESULTS: CGs are particularly stressed in the post-operative period following diagnosis, prior to the first Neuro-Oncology appointment. We plan to launch an in-patient program to meet with CGs early on in the disease trajectory to provide education about the nature of the disease, introduce the CG team members and elaborate on expectations for care of the patient. CGs are clamoring for information and resources about topics that included how to prepare and tell their children about the parent's brain tumor, what to expect as the disease progresses and end of life care. CGs expressed feelings of isolation and the lack of a formal bereavement service. To specifically address these needs we have developed rich parenting resources; created 2 new educational manuals on progressive disease and end of life; formalized the outreach at the time of hospice referral and in the bereavement phase; improved awareness of support groups and the creation of caregiver specific support. CONCLUSIONS: Through the identification of CG needs we have implemented resources and services geared to enhance the support and QOL of the CG and the patient.

Internet Usage Trends in Thoracic Surgery Patients and Their Caregivers.

With trends toward increasing patient involvement in medical decision-making, decreasing clinic times, and the availability of the Internet, patients and their caregivers are increasingly researching cancer diagnoses online. It is essential for physicians to understand patient Internet usage as it relates to their own health education. Internet usage trends have been studied in various areas, but not in thoracic diseases. This prospective cohort study surveyed 337 thoracic surgery patients and their caregivers with both cancer and non-cancer diagnoses to examine their Internet usage trends. Cancer subjects were more likely to research their condition online if they were younger, had a higher income, had a higher education level, and were currently employed. Only age and income level were predictive for non-cancer subjects. Separately, cancer subjects were more likely to trust information found on the Internet if they had a higher education. Subjects were most likely to conduct research on a hospital website than other websites. These data will be helpful to thoracic surgeons who want to appropriately educate patients and their caregivers and direct them to reliable Internet sources. These data also illustrate the importance of developing trustworthy hospital websites with disease-specific information.

Capturing Structured, Pulmonary Disease-Specific Data Elements in Electronic Health Records

Electronic health records (EHRs) have the potential to improve health-care quality by allowing providers to make better decisions at the point of care based on electronically aggregated data and by facilitating clinical research. These goals are easier to achieve when key, disease-specific clinical information is documented as structured data elements (SDEs) that computers can understand and process, rather than as free-text/natural-language narrative. This article reviews the benefits of capturing disease-specific SDEs. It highlights several design and implementation considerations, including the impact on efficiency and expressivity of clinical documentation and the importance of adhering to data standards when available. Pulmonary disease-specific examples of collection instruments are provided from two commonly used commercial EHRs. Future developments that can leverage SDEs to improve clinical quality and research are discussed.

“Standing still in the street”: Experiences, knowledge and beliefs of patients with intermittent claudication—A qualitative study

To explore the experiences of individuals living with intermittent claudication (IC) owing to peripheral artery disease (PAD), their knowledge about the condition, and their thoughts about being asked to walk more and an intervention to promote walking. We conducted five focus group sessions with 24 people (71% male; mean age, 71 years) diagnosed with IC with no prior lower extremity revascularization. Two overriding themes emerged: uncertainty and lack of support/empathy. Participants expressed uncertainty about PAD and IC, how risk factors work, and whether lifestyle change, particularly walking, would help. They also expressed dissatisfaction with and lack of empathy from the medical professionals encountered, with feelings of being dismissed and left on their own. There was enthusiasm for an education program to support their self-management of the disease. Addressing the knowledge gaps and uncertainty around the disease process and walking will be critical to providing impetus to behavior change. A structured education approach to address these issues seems to be desirable and acceptable to those living with PAD. Those working with PAD patients should provide clear and consistent information about the disease process and specific information on walking, as well as support to enable and manage behavior change.

Prospective evaluation of follow-up in melanoma patients in Germany – Results of a multicentre and longitudinal study

BackgroundPatient numbers requiring long-term melanoma surveillance are constantly rising. Surveillance is costly and guideline recommendations vary substantially. MethodsIn this German nationwide study, information on surveillance and treatment of patients diagnosed with melanoma and melanoma in situ (MMis) between April and June 2008 was prospectively collected over four years. Additionally, patient self-report questionnaires were evaluated to assess anxiety, depression, health-related quality of life, socio-demographic information and use of disease specific health information sources at year 4 after primary diagnosis. ResultsComplete data was available for 668 patients from 67 centres, of whom 96.0% were in regular melanoma surveillance. In year 3–4 of surveillance, only 55.6% of locoregionary metastases were detected during surveillance visits. Only 33.3% were self-detected by the patient even though 69.4% were documented as being clinically visible or palpable. Costs of 4year surveillance of 550 patients without tumour recurrence (stage I–IIC and MMis) accumulated to 228,155.75 €. Guideline-adherence for follow-up frequency, lymph node ultrasound, S100 serum level tests and diagnostic imaging recommendations was approximately 60% in year 3–4 of surveillance. Multivariate regression analysis showed that certain patient/tumour characteristics and regional differences were significantly associated with guideline deviations. The percentage of patients who exceeded published cut-off scores indicating clinically relevant symptoms of anxiety and depression were significantly increased. Patients frequently reported lack of psychosocial support and education but ascribed great importance to these. ConclusionsWe recommend further reduction of melanoma follow-up in low-risk melanoma patients and improvement of psycho-social support and patient education for all melanoma patients.

The importance of Internet usage for urologic patients.

To evaluate Internet usage frequency, rate of searched diseases and impact of Internet derived data on future patient physician relationship in patients applying to an Urology Department. A well prepared questionnaire has been given to 1000 referring cases, out of which 589 accepted to participate on a volunteer basis to a face to face interview. Patients were divided into subgroups with respect to age, gender and as well as their educational and economical status. Regarding Internet, questions inquired the use of Internet, the point of view about it, opinions about healthcare system and most commonly urological diseases searched in Internet. Of 589 patients participating, 38.2% reported access to the Internet; in relation to subgroup analysis of data, there was a statistically significant relationship between the use of Internet and age (p < 0.001), gender (p = 0.048), educational status (p < 0.001) and economical status of (p = 0.002) the cases evaluated. Disease specific information was most frequently sought: 18.2% searched for urolithiasis, 14.2% for non-cancer related kidney diseases, and 14.2% for urologic cancers. Younger patients with higher educational status tended to use Internet and the majority of these cases share all these information with their physicians during their visit. These findings indicate that all physicians should consider this fact seriously and make their future plans in the light of internet based activities which provides numerous advantages.

Toward the development of a lupus interactive navigator to facilitate patients and their health care providers in the management of lupus: results of web-based surveys.

BackgroundSystemic lupus erythematosus is an inflammatory autoimmune disease associated with high morbidity and unacceptable mortality. Information and management tools are needed to help persons with lupus cope with their illness and facilitate health care providers in the delivery of care.ObjectiveThe objective of the study was to assess the needs and find solutions to support persons with lupus and their health care providers.MethodsWeb-based surveys were distributed across Canada to persons with lupus and their relatives (n=3119), rheumatologists (n=517), and arthritis health professionals (AHPs) (n=226) by Lupus Canada, the Canadian Rheumatology Association, and the Arthritis Health Professions Association, respectively.ResultsThe survey sample comprised 665 (21.3%) persons with lupus, 98 (19.0%) rheumatologists, and 74 (32.7%) AHPs. Among the participants with lupus, 92.4% were female, the average age was 46.8 (SD 12.7) years, 79.2% were Caucasian, and 58.8% were employed. All Canadian provinces and territories were represented. The majority (43.3%) of respondents were from Ontario. Mean disease duration was 10.2 (SD 9.5) years, and 41.9% rated their global assessment as fair or poor. There was high agreement between lupus participants and health care providers regarding disease-specific information topics. All groups rated topics related to lupus, fatigue, medications, and stress as most important. Ratings differed among lupus participants and their health care providers regarding perceived helpfulness of some of the patient tools, such as the option to view test results. Needs differed for persons with lupus based on age, sex, depression, stress, and disease activity. Differences in health care provider needs were based on amount of experience in treating lupus.ConclusionsInformation and support tools needed for persons with lupus and their health care providers were identified. These results will help guide us in the development of a Web-based Lupus Interactive Navigator as an intervention tool to help persons with lupus self-manage their disease and to facilitate heath care providers in clinical management.

Preliminary International Validation of the Quality of Life in Myelodysplasia Scale (QUALMS)

Background: Disease-specific measures of quality of life (QOL) can allow for improved assessment of disease-specific symptomatology and psychosocial factors. We recently reported on the development of the QUALMS, a 33-item QOL assessment tool for patients with myelodysplastic syndromes (MDS). We now report preliminary internal consistency and validity results from an international prospective study.Methods: From December of 2013 to July of 2014,an international cohort of MDS patients completed the QUALMS as well as the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) and the Functional Assessment of Cancer Therapy Anemia Scale (FACT-An). Eligible patients were 18 or older, and had to have biopsy-proven MDS; those who had undergone stem cell transplantation were excluded. Baseline medical record review was performed at the time of enrollment to document key clinical and laboratory data, including bone marrow pathology and treatments; a second QUALMS administration and medical record review is planned for each patient to assess responsiveness. Participants were recruited from MDS centers across the United States, Canada and Italy. Individual QUALMS items were scored on a 5-point scale ranging from “Never” to “Always”. Overall mean score was calculated by transforming the raw mean to a 100 point scale, with higher scores indicating better MDS-related QOL. Baseline QUALMS scores were compared to clinical factors such as hemoglobin (Hg) and transfusion dependence as well as with scores on the other QOL scales. Preliminary exploratory factor analysis was also undertaken to identify candidate subscales.Results: As of this analysis, 201 patients had enrolled. The mean age was 71.7 years; there were 55% men, and the IPSS distribution was 44% LO, 43% INT-1, 10% INT-2, 1% HI and 2% unclassifiable. The majority of patients (53%) were receiving an erythropoiesis-stimulating agent, hypomethylating agent or lenalidomide, and 29% of the overall cohort was transfusion-dependent. The geographical distribution was as follows: 20% from the Dana-Farber Cancer Institute (Boston, MA); 9% from Columbia University (New York, NY); 15% from the Moffitt Cancer Center (Tampa, FL); 25% from the Odette Cancer Center (Toronto, Canada); and 31% from two GIMEMA hospitals (Rome and Sardegna, Italy). Scores on the QUALMS ranged from 19 to 78; the mean and median scores were 49.6 and 50.0 respectively. The measure had excellent internal consistency (α=.91), and was moderately correlated with the EORTC QLQ-C30: correlations (r’s) with the global health status scale, functional scales (i.e., physical, role, emotional, cognitive and social) as well as fatigue, nausea and pain scales ranged from 0.33 to 0.63 (all p’s <.001). Moderate correlations were also found with the FACT Anemia Score and the FACT Trial Outcomes Index (r’s 0.70 and 0.73; p’s <.001). Patients with Hg less than 10 had consistently lower QUALMS scores than those with higher Hg (46.9 v 51.7, p =.008), as did those who were transfusion-dependent (44.3 v 52.1; p <.001). QUALMS scores significantly differed between those with lower (LO/INT-1) versus higher (INT-2/HI) IPSS scores (50.0 v 44.3, p <.05). Finally, preliminary factor analysis revealed several potentially useful QUALMS subscales, including physical burden, emotional burden, disease information and uncertainty, and disease-associated positives.Conclusions: Our analyses suggest that the QUALMS is a valid measure of disease-specific QOL in MDS. As would be expected, it is moderately (but not highly) related to measures of cancer- and anemia-related QOL, but contributes unique, disease-specific QOL information valued by patients. The QUALMS is a new tool that promises to help clinicians and researchers to better evaluate MDS-specific QOL in the modern treatment era. DisclosuresNo relevant conflicts of interest to declare.

Survey of Internet Use as a Source of Health-Related Information in Qassim Province, Saudi Arabia

Purpose : To estimate the proportion of patients in Qassim Province, Saudi Arabia, who use the Internet to search for health-related information, determine barriers to Internet use, and investigate the relationship between Internet use and socio-demographic variables. Methods : A total of 377 questionnaires were distributed to five main hospitals in Qassim Province (Saudi Arabia). The patients were randomly selected to complete the survey when they arrived to fill their pharmacy prescription. The survey was explained to the patients, and they were given the option to participate or decline. Results : Fifteen percent of the respondents used the Internet as a source of health-related information, especially disease-specific information (97.7 %). Thirty percent used the Internet after a recommendation from their health-care provider. The highest proportions of respondents indicated that lack of training and the cost of Internet access were major barriers to Internet use. There was a significant association between Internet use and education level (p = 0.002). Conclusion : Compared with published data for Qassim City, Saudi Arabia, Internet use to obtain health-related information is relatively low in the Qassim Province, Saudi Arabia. Lack of training is the most common barrier. Keywords : Health information, Barriers, Internet use, Patient and internet, Saudi Arabia

Current pipelines for neglected diseases.

This paper scrutinises pipelines for Neglected Diseases (NDs), through freely accessible and at-least-weekly updated trials databases. It updates to 2012 data provided by recent publications, and integrates these analyses with information on location of trials coordinators and patients recruitment status. Additionally, it provides (i) disease-specific information to better understand the rational of investments in NDs, (ii) yearly data, to understand the investment trends. The search identified 650 clinical studies. Leishmaniasis, Arbovirus infection, and Dengue are the top three diseases by number of clinical studies. Disease diffusion risk seems to be the most important driver of the clinical trials target choice, whereas the role played by disease prevalence and unmet need is controversial. Number of trials is stable between 2005 and 2010, with an increase in the last two years. Patient recruitment was completed for most studies (57.6%), and Phases II and III account for 35% and 28% of trials, respectively. The primary purpose of clinical investigations is prevention (49.3%), especially for infectious diseases with mosquitoes and sand flies as the vector, and treatment (43.2%), which is the primary target for parasitic diseases Research centres and public organisations are the most important clinical studies sponsors (58.9%), followed by the pharmaceutical industry (24.1%), foundations and non-governmental organisations (9.3%). Many coordinator centres are located in less affluent countries (43.7%), whereas OECD countries and BRICS account for 34.7% and 17.5% of trials, respectively. Information was partially missing for some parameters. Notwithstanding, and despite its descriptive nature, this research has enhanced the evidence of the literature on pipelines for NDs. Future contributions may further investigate whether trials metrics are consistent with the characteristics of the interested countries and the explicative variables of trials location, target (disease) choice, and the object of the trials.

Caught in the Web: The Quality of Online Resources for Cancer Patients

Cancer patients are increasingly using the internet to inform themselves. It is essential for oncologists to understand the quality of the information patients access to improve patient education. A small number of studies have looked at the quality of internet resources; however none of these have used a validated tool to examine the quality of resources for multiple malignancies. Our aim is to systematically evaluate the quality of websites intended to provide lung, breast, colorectal, melanoma and ovarian cancer patients with disease specific information.

Changes over time in the utilization of disease-related Internet information in newly diagnosed breast cancer patients 2007 to 2013.

BackgroundAs the number of people with Internet access rises, so does the use of the Internet as a potentially valuable source for health information. Insight into patient use of this information and its correlates over time may reveal changes in the digital divide based on patient age and education. Existing research has focused on patient characteristics that predict Internet information use and research on treatment context is rare.ObjectiveThis study aims to (1) present data on the proportion of newly diagnosed breast cancer patients treated in German breast centers from 2007 to 2013 who used the Internet for information on their disease, (2) look into correlations between Internet utilization and sociodemographic characteristics and if these change over time, and (3) determine if use of Internet information varies with the hospitals in which the patients were initially treated.MethodsData about utilization of the Internet for breast cancer–specific health information was obtained in a postal survey of breast cancer patients that is conducted annually in Germany with a steady response rate of 87% of consenting patients. Data from the survey were combined with data obtained by hospital personnel (eg, cancer stage and type of surgery). Data from 27,491 patients from 7 consecutive annual surveys were analyzed for this paper using multilevel regression modeling to account for clustering of patients in specific hospitals.ResultsBreast cancer patients seeking disease-specific information on the Internet increased significantly from 26.96% (853/3164) in 2007 to 37.21% (1485/3991) in 2013. Similar patterns of demographic correlates were found for all 7 cohorts. Older patients (≥70 years) and patients with <10 years of formal education were less likely to use the Internet for information on topics related to their disease. Internet use was significantly higher among privately insured patients and patients living with a partner. Higher cancer stage and a foreign native language were associated with decreased use in the overall model. Type of surgery was not found to be associated with Internet use in the multivariable models. Intraclass correlation coefficients were small (0.00-0.03) suggesting only a small contribution of the hospital to the patients’ decision to use Internet information. There was no clear indication of a decreased digital divide based on age and education.ConclusionsUse of the Internet for health information is on the rise among breast cancer patients. The strong age- and education-related differences raise the question of how relevant information can be adequately provided to all patients, especially to those with limited education, older age, and living without a partner.

Mapping and Identification of the Urine Proteome of Prostate Cancer Patients by 2D PAGE/MS.

Proteome analysis of the urine has shown that urine contains disease-specific information for a variety of urogenital system disorders, including prostate cancer (PCa). The aim of this study was to determine the protein components of urine from PCa patients. Urine from 8 patients with clinically and histologically confirmed PCa was analyzed by conventional 2D PAGE. The MS identification of the most prominent 125 spots from the urine map revealed 45 distinct proteins. According to Gene Ontology, the identified proteins are involved in a variety of biological processes, majority of them are secreted (71%), and half of them are enzymes or transporters. Comparison with the normal urine proteome revealed 11 proteins distinctive for PCa. Using Ingenuity Pathways Analysis, we have found 3 proteins (E3 ubiquitin-protein ligase rififylin, tumor protein D52, and thymidine phosphorylase) associated with cellular growth and proliferation (p = 8.35 × 10−4 − 3.41 × 10−2). The top network of functional associations between 11 proteins was Cell Death and Survival, Cell-To-Cell Signaling and Interaction, and System Development and Function (p = 10−30). In summary, we have created an initial proteomic map of PCa patient's urine. The results from this study provide some leads to understand the molecular bases of prostate cancer.

Invited commentary

The authors are to be commended for a timely and unique study that compares the Vascular Quality Initiative (VQI) and National Surgical Quality Improvement Program (NSQIP) data sets in an identical patient cohort. It is widely accepted that risk adjustment is essential when reporting outcomes and assumed that the database used for this assessment accurately reflects patient co-morbidities and outcomes. The results of this study therefore are remarkable in that variables that are seemingly “black and white,” such as sex, ethnicity, prevalence of diabetes, or variables that should be extracted from the chart as a “number” (eg, American Society of Anesthesiologists class) showed more variability than might be expected. It is also disturbing that there is a lack of concordance in patient outcomes such as wound infection or change in renal function. Such discordance becomes concerning when patient outcomes are used as a factor for determining reimbursement, financial penalties, and/or rating the practitioner. It is feasible that a provider's outcomes could be in the acceptable range as monitored by one methodology yet be penalized by a payor using another methodology. The current study compared two databases, but many others are also being used such as data for the University Health Consortium, Society for Thoracic Surgery, disease-specific databases, and specialty-specific databases. Each database has inherent differences that are based on who collects or reports the information; the completeness of the medical record; definitions used for patient conditions, complications, or outcomes; the time frame for collection of data; and its intended purpose such as hospital related information, physician outcome, or disease-specific information. The authors have identified many of these issues as contributing to discordance between datasets. Because of associated costs, the number of programs in which institutions and practices participate will be limited. This naturally leads to questions regarding which database is more accurate or which database should be used to measure performance, specifically as it relates to payment. Studies such as this must be undertaken to address these questions. Physician and specialty society input is essential to guide the development and rational use of database information. It is also imperative that physicians understand the methodology and definitions that are used in any program that measures patient outcomes. The authors are to be commended for this study, and I look forward to future work by this group. Outcomes reported by the Vascular Quality Initiative and the National Surgical Quality Improvement Program are not comparableJournal of Vascular SurgeryVol. 60Issue 1PreviewThe Vascular Quality Initiative (VQI) and National Surgical Quality Improvement Program (NSQIP) have emerged as the primary vascular surgery quality measurement tools with the purpose of evaluating perioperative outcomes and assessing hospital and physician quality. VQI uses self-reporting to capture all index vascular procedures during the inpatient period. NSQIP employs nurse abstractors to capture a sample of procedures and covers 30-day events. We hypothesize that patients undergoing lower extremity bypass (LEB) will exhibit high concordance for preoperative variables and low concordance for postoperative variables between these data sets. Full-Text PDF Open Archive

Disease specific knowledge about cystic fibrosis, patient education and counselling in Poland.

The presented study assesses levels of specific knowledge of the disease among cystic fibrosis (CF) patients and their families, and evaluates the effectiveness of a targeted, disease specific education programme. A cross-sectional survey among 462 families with a CF child evaluated their knowledge of the disease. A one year follow up survey among 200 families assessed the effectiveness of an educational programme developed to correct gaps, errors and misconceptions identified in the previously administered survey. Self-administered, comprehensive, 5-domains, 45-item multiple-choice CF Disease Knowledge Questionnaire (CFDKQ) was anonymously completed by 462 subjects. 228 respondents were male (49%), 234 female (51%). The level of disease-specific knowledge in the age groups 0-6 and 7-10 years, was significantly higher than in 11-14 and 15-18 years of age groups (p<0.005). General medical and Genetics/Reproduction knowledge was low in all patients. Significant predictors of patient and parental knowledge were age and domicile. Patients and parents rely heavily on doctors for information about CF (77%). The follow-up survey (CFDKQ) emphasized that special education programmes significantly improved levels of disease specific knowledge (p<0.0001). If left uncorrected, the misconceptions, gaps and errors in CF knowledge identified in the presented study could result in inadvertent non-adherence to treatment, and impact on the progression and outcome of the disease. Secondly, the results demonstrate the effectiveness of targeted, disease specific information in improving disease knowledge of CF patients and their families, and highlights the value and need for the development of educational programmes for chronically ill patients and their families.