Patient access to complex chronic disease records on the internet

Background: Access to medical records on the Internet has been reported to be acceptable and popular with patients, although most published evaluations have been of primary care or office-based practice. We tested the feasibility and acceptability of making unscreened results and data from a complex chronic disease pathway (renal medicine) available to patients over the Internet in a project involving more than half of renal units in the UK. Methods: Content and presentation of the Renal PatientView (RPV) system was developed with patient groups. It was designed to receive information from multiple local information systems and to require minimal extra work in units. After piloting in 4 centres in 2005 it was made available more widely. Opinions were sought from both patients who enrolled and from those who did not in a paper survey, and from staff in an electronic survey. Anonymous data on enrolments and usage were extracted from the webserver. Results: By mid 2011 over 17,000 patients from 47 of the 75 renal units in the UK had registered. Users had a wide age range (<10 to >90 yrs) but were younger and had more years of education than non-users. They were enthusiastic about the concept, found it easy to use, and 80% felt it gave them a better understanding of their disease. The most common reason for not enrolling was being unaware of the system. A minority of patients had security concerns, and these were reduced after enrolling. Staff responses were also strongly positive. They reported that it aided patient concordance and disease management, and increased the quality of consultations with a neutral effect on consultation length. Neither patient nor staff responses suggested that RPV led to an overall increase in patient anxiety or to an increased burden on renal units beyond the time required to enrol each patient. Conclusions: Patient Internet access to secondary care records concerning a complex chronic disease is feasible and popular, providing an increased sense of empowerment and understanding, with no serious identified negative consequences. Security concerns were present but rarely prevented participation. These are powerful reasons to make this type of access more widely available

How does mental health care perform in respect to service users' expectations? Evaluating inpatient and outpatient care in Germany with the WHO responsiveness concept

<p>Abstract</p> <p>Background</p> <p>Health systems increasingly try to make their services more responsive to users' expectations. In the context of the World Health Report 2000, WHO developed the concept of health system <it>responsiveness </it>as a performance parameter. <it>Responsiveness </it>relates to the system's ability to respond to service users' legitimate expectations of non-medical aspects. We used this concept in an effort to evaluate the performance of mental health care in a catchment area in Germany.</p> <p>Methods</p> <p>In accordance with the method WHO used for its <it>responsiveness </it>survey, <it>responsiveness </it>for inpatient and outpatient mental health care was evaluated by a standardised questionnaire. <it>Responsiveness </it>was assessed in the following domains: <it>attention, dignity</it>, <it>clear communication</it>, <it>autonomy, confidentiality, basic amenities, choice </it>of health care provider, <it>continuity</it>, and <it>access to social support</it>. Users with complex mental health care needs (i.e., requiring social and medical services or inpatient care) were recruited consecutively within the mental health services provided in the catchment area of the Hanover Medical School.</p> <p>Results</p> <p>221 persons were recruited in outpatient care and 91 in inpatient care. Inpatient service users reported poor <it>responsiveness </it>(22%) more often than outpatients did (15%); however this was significant only for the domains <it>dignity </it>and <it>communication</it>. The best performing domains were <it>confidentiality </it>and <it>dignity</it>; the worst performing were <it>choice</it>, <it>autonomy </it>and <it>basic amenities </it>(only inpatient care). <it>Autonomy </it>was rated as the most important domain, followed by <it>attention </it>and <it>communication</it>. <it>Responsiveness </it>within outpatient care was rated worse by people who had less money and were less well educated. Inpatient <it>responsiveness </it>was rated better by those with a higher level of education and also by those who were not so well educated. 23% of participants reported having been discriminated against in mental health care during the past 6 months.</p> <p>The results are similar to prior <it>responsiveness </it>surveys with regard to the overall better performance of outpatient care. Where results differ, this can best be explained by certain characteristics that are applicable to mental health care and also by the users with complex needs. The expectations of <it>attention </it>and <it>autonomy</it>, including participation in the treatment process, are not met satisfactorily in inpatient and outpatient care.</p> <p>Conclusion</p> <p><it>Responsiveness </it>as a health system performance parameter provides a refined picture of inpatient and outpatient mental health care. Reforms to the services provided should be orientated around domains that are high in importance, but low in performance. Measuring <it>responsiveness </it>could provide well-grounded guidance for further development of mental health care systems towards becoming better patient-orientated and providing patients with more respect.</p

A qualitative study of patients' views on quality of primary care consultations in Hong Kong and comparison with the UK CARE Measure

&lt;b&gt;Background&lt;/b&gt; Patients' priorities and views on quality care are well-documented in Western countries but there is a dearth of research in this area in the East. The aim of the present study was to explore Chinese patients' views on quality of primary care consultations in Hong Kong and to compare these with the items in the CARE measure (a process measure of consultation quality widely used in the UK) in order to assess the potential utility of the CARE measure in a Chinese population.&lt;p&gt;&lt;/p&gt; &lt;b&gt;Methods&lt;/b&gt; Individual semi-structured interviews were conducted on 21 adult patients from 3 different primary care clinics (a public primary healthcare clinic, a University health centre, and a private family physician's clinic). Topics discussed included expectations, experiences, and views about quality of medical consultations. Interviews were typed verbatim, and a thematic approach was taken to identify key issues. These identified issues were then compared with the ten CARE measure items, using a CARE framework: Connecting (Care Measure items 1–3), Assessing (item 4), Responding (items 5,6), and Empowering (items 7–10).&lt;p&gt;&lt;/p&gt; &lt;b&gt;Results&lt;/b&gt; Patients judged doctors in terms of both the process of the consultation and the perceived outcomes. Themes identified that related to the interpersonal process of the consultation fitted well under the CARE framework; Connecting and communicating (18/21 patients), Assessing holistically (10/21 patients), Responding (18/21 patients) and Empowering (19/21 patients). Patients from the public clinic, who were generally of lower socio-economic status, were least likely to expect holistic care or empowerment. Two-thirds of patients also judged doctors on whether they performed an adequate physical examination, and three-quarters on the later outcomes of consultation (in terms of relief or cure and/or side-effects of prescribed drugs).&lt;p&gt;&lt;/p&gt; &lt;b&gt;Conclusion&lt;/b&gt; These findings suggest that Chinese patients in Hong Kong value engaged, empathic primary care doctors and judge the quality of consultations largely on these human skills and the attitudes and values that underpin them, as well as on the perceived outcomes of treatment. The match between themes relating to consultation process and the CARE Measure items suggests utility of this measure in this population, but further quantitative validation is required

Case management in oncology rehabilitation (CAMON): The effect of case management on the quality of life in patients with cancer after one year of ambulant rehabilitation. A study protocol for a randomized controlled clinical trial in oncology rehabilitation

Background Cancer diseases and their therapies have negative effects on the quality of life. The aim of this study is to assess the effectiveness of case management in a sample of oncological outpatients with the intent of rehabilitation after cancer treatment. Case management wants to support the complex information needs of the patients in addition to the segmented structure of the health care system. Emphasis is put on support for self-management in order to enhance health - conscious behaviour, learning to deal with the burden of the illness and providing the opportunity for regular contacts with care providers. We present a study protocol to investigate the efficacy of a case management in patients following oncology rehabilitation after cancer treatment. Methods The trial is a multicentre, two-arm randomised controlled study. Patients are randomised parallel in either 'usual care' plus case management or 'usual care' alone. Patients with all types of cancer can be included in the study, if they have completed the therapy with chemo- and/or radiotherapy/surgery with curative intention and are expected to have a survival time >1 year. To determine the health-related quality of life the general questionnaire FACT G is used. The direct correlation between self-management and perceived self-efficacy is measured with the Jerusalem & Schwarzer questionnaire. Patients satisfaction with the care received is measured using the Patient Assessment of Chronic Illness Care 5 As (PACIC-5A). Data are collected at the beginning of the trial and after 3, 6 and 12 months. The power analysis revealed a sample size of 102 patients. The recruitment of the centres began in 2009. The inclusion of patients began in May 2010. Discussion Case management has proved to be effective regarding quality of life of patients with chronic diseases. When it comes to oncology, case management is mainly used in cancer treatment, but it is not yet common in the rehabilitation of cancer patients. Case management in oncology rehabilitation is not well-established in Switzerland. A major challenge of the study will therefore probably be the recruitment of the patients due to the physicians' and patients' scarcely existing awareness of this issue

Relationships of the Location and Content of Rounds to Specialty, Institution, Patient-Census, and Team Size

OBJECTIVE: Existing observational data describing rounds in teaching hospitals are 15 years old, predate duty-hour regulations, are limited to one institution, and do not include pediatrics. We sought to evaluate the effect of medical specialty, institution, patient-census, and team participants upon time at the bedside and education occurring on rounds. METHODS AND PARTICIPANTS: Between December of 2007 and October of 2008 we performed 51 observations at Lucile Packard Children's Hospital, Seattle Children's Hospital, Stanford University Hospital, and the University of Washington Medical Center of 35 attending physicians. We recorded minutes spent on rounds in three location and seven activity categories, members of the care team, and patient-census. RESULTS: Results presented are means. Pediatric rounds had more participants (8.2 vs. 4.1 physicians, p<.001; 11.9 vs. 2.4 non-physicians, p<.001) who spent more minutes in hallways (96.9 min vs. 35.2 min, p<.001), fewer minutes at the bedside (14.6 vs. 38.2 min, p = .01) than internal medicine rounds. Multivariate regression modeling revealed that minutes at the bedside per patient was negatively associated with pediatrics (-2.77 adjusted bedside minutes; 95% CI -4.61 to -0.93; p<.001) but positively associated with the number of non-physician participants (0.12 adjusted bedside minutes per non physician participant; 95% CI 0.07 to 0.17; p = <.001). Education minutes on rounds was positively associated with the presence of an attending physician (2.70 adjusted education minutes; 95% CI 1.27 to 4.12; p<.001) and with one institution (1.39 adjusted education minutes; 95% CI 0.26 to 2.53; p = .02). CONCLUSIONS: Pediatricians spent less time at the bedside on rounds than internal medicine physicians due to reasons other than patient-census or the number of participants in rounds. Compared to historical data, internal medicine rounds were spent more at the bedside engaged in patient care and communication, and less upon educational activities

Health risk assessment of instant noodles commonly consumed in Port Harcourt, Nigeria

The current study investigated the levels of some heavy metals [Lead (Pb), Arsenic (As), Nickel (Ni), Mercury (Hg), Copper (Cu), Cadmium (Cd), Aluminium (Al) and Chromium (Cr)] and Polycyclic Aromatic Hydrocarbons (PAHs) in six brands of instant noodles (CFN, GFC, NGP, GAA, CUN and FCS) commonly consumed in Port Harcourt, Nigeria. Risks of consumption of contaminated noodles were also assessed. Heavy metals content and PAHs were determined using Flame Atomic Absorption Spectrophotometer (AAS) and Gas Chromatography (GC), respectively. Concentration of heavy metals as Pb, Ni, Cu, Al and Cr were detected while As, Hg and Cd were not detected in noodles. High average concentration (mean ± SD mg/kg) of Pb were observed in brands CFN (3.163 ± 0.21) and GFC (1.022 ± 0.08) which were significantly higher (P≤0.05) than in NGP (0.043 ± 0.15) and GAA (0.276 ± 0.18), although all were above WHO permissible limits (0.025 mg/kg). Target Hazard Quotient and Hazard Index for Pb were >1 in brands CFN and GFC indicating unacceptable risk. Results of PAHs showed brands had total PAHs (mg/kg) in the order: CFN >CUN >GAA >NGP >FCS > GFC. Although Carcinogenic Risks associated with these noodles are within permissible range, consumption of CFN and GFC could pose greater health risk to consumers. Long term consumption of brands CUN, CFN and GAA may have higher probability of carcinogenesis among consumers. We therefore recommend more diligent regulatory policies and monitoring by relevant Government agencies (WHO, NAFDAC, CPC and SON) to ensure wholesome noodles get to consumers

Language development after cochlear implantation: an epigenetic model

Growing evidence supports the notion that dynamic gene expression, subject to epigenetic control, organizes multiple influences to enable a child to learn to listen and to talk. Here, we review neurobiological and genetic influences on spoken language development in the context of results of a longitudinal trial of cochlear implantation of young children with severe to profound sensorineural hearing loss in the Childhood Development after Cochlear Implantation study. We specifically examine the results of cochlear implantation in participants who were congenitally deaf (N = 116). Prior to intervention, these participants were subject to naturally imposed constraints in sensory (acoustic–phonologic) inputs during critical phases of development when spoken language skills are typically achieved rapidly. Their candidacy for a cochlear implant was prompted by delays (n = 20) or an essential absence of spoken language acquisition (n = 96). Observations thus present an opportunity to evaluate the impact of factors that influence the emergence of spoken language, particularly in the context of hearing restoration in sensitive periods for language acquisition. Outcomes demonstrate considerable variation in spoken language learning, although significant advantages exist for the congenitally deaf children implanted prior to 18 months of age. While age at implantation carries high predictive value in forecasting performance on measures of spoken language, several factors show significant association, particularly those related to parent–child interactions. Importantly, the significance of environmental variables in their predictive value for language development varies with age at implantation. These observations are considered in the context of an epigenetic model in which dynamic genomic expression can modulate aspects of auditory learning, offering insights into factors that can influence a child’s acquisition of spoken language after cochlear implantation. Increased understanding of these interactions could lead to targeted interventions that interact with the epigenome to influence language outcomes with intervention, particularly in periods in which development is subject to time-sensitive experience