IBD2020 global forum: results of an international patient survey on quality of care.
Ontology highlight
ABSTRACT: Background/aims
IBD2020 is a global forum for standards of care in inflammatory bowel disease (IBD). The aim of the IBD2020 survey was to identify and describe variations in quality care of IBD.Methods
Patients with IBD from Finland, Italy, France, Canada, Germany, UK, Spain and Sweden were surveyed during 2013 to 2014, covering: disease characteristics; impact on life and work; organization and perceived quality of care.Results
Seven thousand five hundred and seven patients participated (median age, 39 years [range, 10-103 years]; 2,354 male [31.4%]), including 4,097 (54.6%) with Crohn's disease (CD) and 3,410 (45.4%) with ulcerative colitis (UC). Median time from symptom onset to diagnosis was 1 year for both CD (range, 0-47 years) and UC (range, 0-46 years), with no clear evidence of improvement in diagnostic delay over the preceding 24 years. Half of the patients (3,429; 50.0%) rated their care as "excellent" or "very good," with similar results for CD and UC across countries. Five factors were significantly (P<0.01) associated with perceived good quality of care: quality of specialist communication; review consultation being long enough; failure to share information; no access to a dietician; speed of advice.Conclusions
The IBD2020 survey has highlighted areas related to quality of care of IBD from the patients' perspective, with scope for improvement.
SUBMITTER: Irving P
PROVIDER: S-EPMC6223463 | biostudies-literature | 2018 Oct
REPOSITORIES: biostudies-literature
Publications
IBD2020 global forum: results of an international patient survey on quality of care.
Irving Peter P Burisch Johan J Driscoll Richard R Olsson Mats M Fullarton John R JR Rodgers-Gray Barry S BS Travis Simon Pl SP
Intestinal research 20181010 4
<h4>Background/aims</h4>IBD2020 is a global forum for standards of care in inflammatory bowel disease (IBD). The aim of the IBD2020 survey was to identify and describe variations in quality care of IBD.<h4>Methods</h4>Patients with IBD from Finland, Italy, France, Canada, Germany, UK, Spain and Sweden were surveyed during 2013 to 2014, covering: disease characteristics; impact on life and work; organization and perceived quality of care.<h4>Results</h4>Seven thousand five hundred and seven patie ...[more]
Similar Datasets
Project description:INTRODUCTION:Fabry disease is an X-linked lysosomal storage disorder caused by a deficiency of ?-galactosidase A. Symptoms include neuropathic pain and gastrointestinal problems, such as diarrhoea. To inform and support the design of a Phase III clinical trial for a new oral treatment for Fabry disease, this study evaluated patients' experiences of Fabry disease symptoms, the impact of symptoms on their quality of life, and their views on participating in clinical trials. METHODS:An online survey questionnaire was distributed to patients with Fabry disease, through relevant patient organisations. The questionnaire consisted mainly of quantitative, closed questions with pre-defined response options. Fabry-specific pain intensity and its impact on quality of life were rated on a scale from 0 to 10. RESULTS:In total, 367 patients completed the survey, of whom half reported frequent pain, moderate to severe pain, and pain in their hands and feet. Pain frequency, intensity and location were similar for males and females. There was no clear association between Fabry-specific pain and the use of enzyme replacement therapy (ERT), with moderate to severe pain reported by 80.4% of participants receiving ERT and by 75.0% of participants not receiving ERT. Of participants who were receiving ERT, 35.7% said they were willing to discontinue it to take part in a clinical trial testing a new oral drug for treating Fabry disease. Gastrointestinal symptoms were more heterogeneous in nature and frequency than Fabry-specific pain, but still affected a significant proportion of participants. CONCLUSIONS:Both male and female patients with Fabry disease experience significant Fabry-specific pain, which affects their quality of life. Furthermore, frequent diarrhoea affects many patients. The symptoms occur independently of the use of ERT. This suggests the healthcare needs of patients with Fabry disease are not being fully met, and additional treatments are required to improve symptoms and quality of life. FUNDING:This study was sponsored by Actelion Pharmaceuticals Ltd. Study sponsorship was transferred to Idorsia Pharmaceuticals Ltd in July 2018.
| S-EPMC6822826 | biostudies-literature
Project description:To evaluate patient experiences of specific aspects of haemodialysis care across several countries.Cross-sectional survey using the Choices for Healthy Outcomes in Caring for End-Stage Renal Disease (CHOICE) questionnaire.Haemodialysis clinics within a single provider in Europe and South America.2748 adults treated in haemodialysis.The primary outcome was patient satisfaction with overall care. Secondary outcomes included patient experiences of individual aspects of dialysis care.2145 (78.1%) adults responded to the questionnaire. Fewer than half (46.5% (95% CI 44.5% to 48.6%)) rated their overall care as excellent. Global perceptions of care were uninfluenced by most respondent characteristics except age and depressive symptoms; older respondents were less critical of their care (adjusted OR for excellent rating 1.44 (1.01 to 2.04)) and those with depressive symptoms were less satisfied (0.56 (0.44 to 0.71)). Aspects of care that respondents most frequently ranked as excellent were staff attention to dialysis vascular access (54% (52% to 56%)); caring of nurses (53% (51% to 55%)); staff responsiveness to pain or discomfort (51% (49% to 53%)); caring, helpfulness and sensitivity of dialysis staff (50% (48% to 52%)); and ease of reaching dialysis staff by telephone (48% (46% to 50%)). The aspects of care least frequently ranked as excellent were information provided when choosing a dialysis modality (23% (21% to 25%)), ease of seeing a social worker (28% (24% to 32%)), information provided about dialysis (34% (32% to 36%)), accuracy of information from nephrologist (eg, about prognosis or likelihood of a kidney transplant; 37% (35% to 39%)) and accuracy of nephrologists' instructions (39% (36% to 41%)).Haemodialysis patients are least satisfied with the complex aspects of care. Patients' expectations for accurate information, prognosis, the likelihood of kidney transplantation and their options when choosing dialysis treatment need to be considered when planning healthcare research and practices.
| S-EPMC4039823 | biostudies-other
Project description:BackgroundAs the problem of patient non-adherence persists and a solution appears hard to be found, it continues to be important to look for new ways to further the issue. We recently conducted a meta-review of adherence intervention studies which yielded a preliminary agenda for future research, practice and theory development in patient adherence. The objective of the present project was to find out to what extent adherence experts consider this agenda relevant and feasible.MethodsThe thirty-five corresponding authors of the review studies included in the meta-review were invited to join the International Expert Forum on Patient Adherence and to participate in a four-week web-based focus group discussion. The discussion was triggered by the points on the preliminary agenda presented as propositions to which forum members could react. Two researchers analysed the transcripts and selected relevant phrases.ResultsTwenty adherence experts participated. Various ideas and viewpoints were raised. After the closure of the web-site, the expert forum was asked to authorize the synthesis of the discussion, to list the propositions in order of priority and to answer a few questions on the use of the web-based focus group as a tool to obtain expert opinions. Their ranking showed that the development of simple interventions is the most promising step to take in fostering patient adherence, preferably within a multidisciplinary setting of medical, pharmaceutical, social and technical science and, not in the least, by incorporating patients' perspectives.ConclusionFor enhancing adherence, the development of simple interventions originating from a multidisciplinary perspective including patients' input, appears most promising. Disclosing patients' perspectives requires open communication about patients' expectations, needs and experiences in taking medication and about what might help them to become and remain adherent.
| S-EPMC2278135 | biostudies-literature
Project description:BackgroundThe patient-centered medical home (PCMH) model has gained support, but the impact of this model on the quality and equity of care merits further evaluation.ObjectiveTo determine if PCMHs are associated with improved quality and equity in pediatric primary care.Research designUsing the 2007/2008 National Survey of Children's Health, a nationally representative survey of parents/guardians of children (age, 0-17 y), we evaluated the association of PCMHs with 10 quality-of-care measures using multivariable regression models, adjusting for demographic and socioeconomic covariates. For quality indicators that were significantly associated with medical homes, we determined if this association differed by race/ethnicity.ResultsCompared with children without medical homes, those with medical homes had significantly better adjusted rates for 6 of 10 quality measures (all P≤0.02), such as obtaining a developmental history [adjusted rates % (SE): 41.7 (1.3) vs. 52.0 (1.1), P<0.001]. Having a medical home was associated with better adjusted rates of receiving a developmental history exam for both white and black children, but the disparity between these groups was not significantly narrowed [difference in risk differences (SE): 0.9 (4.3) for whites vs. blacks; P=0.83].ConclusionsOur results underscore the benefits of the medical home model for children while highlighting areas for improvement, such as narrowing disparities. Our findings also emphasize the key role of patient experience measures in the evaluation of medical homes.
| S-EPMC3766903 | biostudies-literature
Project description:Background: The severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) pandemic resulted in redeployment of non-critical care-trained providers to intensive care units across the world. Concurrently, traditional venues for delivery of medical education faced major disruptions. The need for a virtual forum to fill knowledge gaps for healthcare workers caring for patients with coronavirus disease (COVID-19) was apparent in the early stages of the pandemic. Objective: The weekly, open-access COVID-19 Critical Care Training Forum (CCCTF) organized by the American Thoracic Society (ATS) provided a global audience access to timely content relevant to their learning needs. The goals of the forum were threefold: to aid healthcare providers in assessment and treatment of patients with COVID-19, to reduce provider anxiety, and to disseminate best practices. Methods: The first 13 ATS CCCTF sessions streamed live from April to July 2020. Structured debriefs followed each session and participant feedback was evaluated in planning of subsequent sessions. A second set of 14 sessions streamed from August to November 2020. Content experts were recruited from academic institutions across the United States. Results: As of July 2020, the ATS CCCTF had 2,494 live participants and 7,687 downloads for a total of 10,181 views. The majority of participants had both completed training (58.6%) and trained in critical care (53.8%). Physicians made up a majority (82.2%) of the audience that spanned the globe (61% were international attendees). Conclusion: We describe the rapid and successful implementation of an open-access medical education forum to address training and knowledge gaps among healthcare personnel caring for patients with COVID-19.
| S-EPMC8362763 | biostudies-literature
Project description:BackgroundThis descriptive study provides the first examination of global naturopathic education, regulation and practice frameworks that have potential to constrain or assist professional formation and integration in global health systems. Despite increasing public use, a significant workforce, and World Health Organization calls for national policy development to support integration of services, existent frameworks as potential barriers to integration have not been examined.MethodsThis cross-sectional survey utilized purposive sampling of 65 naturopathic organisations (educational institutions, professional associations, and regulatory bodies) from 29 countries. Organizational representatives completed an on-line survey, conducted between Nov 2016 - Aug 2019. Frequencies and cross-tabulation statistics were analyzed using SPSSv.25. Qualitative responses were hand-coded and thematically analysed where appropriate.ResultsSixty-five of 228 naturopathic organizations completed the survey (29% response rate) from 29 of 46 countries (63% country response rate). Most education programs (68%) were delivered via a national framework. Higher education qualifications (60%) predominated. Organizations influential in education were professional associations (75.4%), particularly where naturopathy was unregulated, and accreditation bodies (41.5%) and regulatory boards (33.8%) where regulated. Full access to controlled acts, and to health insurance rebates were more commonly reported where regulated. Attitude of decision-makers, opinions of other health professions and existing legislation were perceived to most impact regulation, which was globally heterogeneous.ConclusionEducation and regulation of the naturopathic profession has significant heterogeneity, even in the face of global calls for consistent regulation that recognizes naturopathy as a medical system. Standards are highest and consistency more apparent in countries with regulatory frameworks.
| S-EPMC7893718 | biostudies-literature
Project description:Background: The COVID-19 pandemic caused significant disruptions in international communications and travel for academic global health programs (AGHPs) in both high-income countries (HICs) and low- and middle-income countries (LMICs). Given the importance of international travel and communication to AGHPs, the pandemic has likely had considerable impact on the education, research, and administrative components of these programs. To date, no substantive study has determined the impacts of the COVID-19 pandemic on AGHPs in HICs and LMICs. This study assessed the impacts and resultant adaptations of AGHPs to pandemic realities with the goal of sharing strategies and approaches. Methods: This study applied a mixed methods sequential explanatory design to survey AGHPs in HICs and LMICs about the impacts of the COVID-19 pandemic on three program domains: education, research, and administration. First, we surveyed a range of AGHP stakeholders to capture quantitative data on the pandemic’s impact. Subsequently we conducted semi-structured interviews with select survey participants to gather qualitative data expanding on specific survey responses. Data from both phases were then compared and interpreted together to develop conclusions and suggest adaptive/innovative approaches for AGHPs. Results: AGHPs in both HICs and LMICs were significantly impacted by the pandemic in all three domains, though in different ways. While education initiatives managed to adapt by pivoting towards virtual learning, research programs were impacted more negatively by the disruptions in communication and international travel. The impact of the pandemic on scholarly output as well as on funding for education and research was quite variable, although LMIC programs were more negatively impacted. Administratively, AGHPs implemented a range of safety and risk mitigation strategies and showed a low risk tolerance for international travel. The pandemic posed many challenges but also revealed opportunities for AGHPs. Conclusions: The COVID-19 pandemic disrupted AGHPs in HICs and LMICs in expected and unexpected ways. Programs noted some unanticipated reductions in education program funding, negative impacts on research programs, and reduced scholarly output. Many programs reported well-coordinated adaptive responses to the pandemic including, for instance, virtual (in place of in-person) collaboration in research. The pandemic will likely have lasting impacts with regard to education, research collaborations, and administration of programs.
| S-EPMC9524235 | biostudies-literature
Project description:ObjectivesTo evaluate the quality of communication between hospitals and home health care (HHC) clinicians and patient preparedness to receive HHC in a statewide sample of HHC nurses and staff.DesignA web-based 48-question cross-sectional survey of HHC nurses and staff in Colorado to describe the quality of communication after hospital discharge and patient preparedness to receive HHC from the perspective of HHC nurses and staff. Questions were on a Likert scale, with optional free-text questions.Setting and participantsBetween January and June 2017, we sent a web-based survey to individuals from the 56 HHC agencies in the Home Care Association of Colorado that indicated willingness to participate.ResultsWe received responses from 50 of 122 individuals (41% individual response rate) representing 14 of 56 HHC agencies (25% agency response rate). Half of the respondents were HHC nurses, the remainder were managers, administrators, or quality assurance clinicians. Among respondents, 60% (n = 30) reported receiving insufficient information to guide patient management in HHC and 44% (n = 22) reported encountering problems related to inadequate patient information. Additional tests recommended by hospital clinicians was the communication domain most frequently identified as insufficient (58%). More than half of respondents (52%) indicated that patient preparation to receive HHC was inadequate, with patient expectations frequently including extended-hours caregiving, housekeeping, and transportation, which are beyond the scope of HHC. Respondents with electronic health record (EHR) access for referring providers were less likely to encounter problems related to a lack of information (27% vs 57% without EHR access, P = .04). Respondents with EHR access were also more likely to have sufficient information about medications and contact isolation.Conclusions/implicationsCommunication between hospitals and HHC is suboptimal, and patients are often not prepared to receive HHC. Providing EHR access for HHC clinicians is a promising solution to improve the quality of communication.
| S-EPMC6594376 | biostudies-literature
Project description:Background: Terminological problems concerning sedation in palliative care and consequences for research and clinical decision making have been reported frequently. Objectives: To gather data on the application of definitions of sedation practices in palliative care to clinical cases and to analyze implications for high-quality definitions. Design: We conducted an online survey with a convenience sample of international experts involved in the development of guidelines on sedation in palliative care and members of the European Association for Palliative Care (EAPC). Participants were asked to apply four published definitions to four case vignettes. Data were analyzed using descriptive statistics. Results: A total of 32 experts and 271 EAPC members completed the survey. The definitions were applied correctly in n = 2200/4848 cases (45.4%). The mean number of correct applications of the definitions (4 points max.) was 2.2 ± 1.14 for the definition of the SedPall study group, 1.8 ± 1.03 for the EAPC definition, 1.7 ± 0.98 for the definition of the Norwegian Medical Association, and 1.6 ± 1.01 for the definition of the Japanese Society of Palliative Medicine. The rate of correct applications for the 16 vignette-definition pairs varied between 70/303 (23.1%) and 227/303 (74.9%). The content of definitions and vignettes together with free-text comments explains participants' decisions and misunderstandings. Conclusions: Definitions of sedation in palliative care are frequently incorrectly applied to clinical case scenarios under simplified conditions. This suggests that clinical communication and research might be negatively influenced by misunderstandings and inconsistent labeling or reporting of data. Clinical Trial Registration Number: DRKS00015047.
| S-EPMC10998700 | biostudies-literature
Project description:BACKGROUND:Patient-centred quality indicators allow health care systems to monitor and evaluate patient-centred care practices and identify gaps in health care quality. Our objective was to determine whether Canadian provinces and territories measure patient-centred care, identify patient-centred quality indicators currently being used and compare patient-centred care practices and measurement in Canada to those of health care systems in other countries. METHODS:An online survey was developed to collect data on demographic characteristics, patient-centred care practices, and indicators used at quality improvement organizations and health care authorities. The survey was conducted with quality improvement leads in Canada and 4 other countries. Content analysis methods were used to analyze and report the data. Patient-centred quality indicators were identified and categorized according to the Donabedian framework (structure, process, outcome). RESULTS:The survey had a response rate of 47/67 (70%) and a completion rate of 58/60 (97%). We obtained completed surveys from 12 of the 13 provinces and territories in Canada. Respondents from most provinces indicated their organization used patient-centred care measures to inform practices. Respondents in only 4 provinces/territories reported using patient-centred quality indicators, for a total of 61 unique indicators. Most indicators used across Canada assessed aspects of care related to the Donabedian components of process and outcome. Findings for Canada were comparable to those for Sweden, England, Australia and New Zealand, where many measures are still in development. INTERPRETATION:This study provided greater insight into patient-centred care measurement across Canada, Sweden, England, Australia and New Zealand and helped us to identify patient-centred quality indicators currently in use. These results will inform the development of a standard set of patient-centred quality indicators for implementation by health care organizations to improve the quality of health care.
| S-EPMC6298869 | biostudies-other