Development of patient-centred standards of care for rheumatoid arthritis in Europe: the eumusc.net project.
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ABSTRACT: Objective
The eumusc.net project is a European Union (EU) commission and European League Against Rheumatism (EULAR)funded project that aims to facilitate equal standards for musculoskeletal health in all EU countries. One work-package was to develop evidence-based and patient-centred standards of care (SOC), for rheumatoid arthritis (RA) understandable for patients and professionals across Europe.Method
A review of documents covering clinical practice 'guidelines' and SOC for RA was conducted. The obtained documents were evaluated using the Appraisal of Guidelines for Research and Evaluation II (AGREE II) criteria, and all recommended methods to treat RA were extracted. Based on this information, a three-round Delphi exercise was performed including a consensus group meeting of 21 researchers and patient representatives.Results
16 patient-centred SOC were formulated including a lay version in the format of a checklist. An example is SOC 3: 'People with RA should receive a treatment plan developed individually between them and their clinician at each visit.' The corresponding checklist question reads: 'Have I received a treatment plan which includes an explanation of my management, expected goals and outcomes and important contact details?'Conclusions
The SOC for RA will be available in all 23 official European languages and contribute to more unified treatment approaches in Europe.
SUBMITTER: Stoffer MA
PROVIDER: S-EPMC3995221 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:ObjectiveThe eumusc.net project is an initiative founded by the European Community and the European League Against Rheumatism. One aim of the project was to facilitate equal standards for musculoskeletal health across Europe. The aim of this work-package was to develop patient-centred and consensus based standards of care (SOC) for osteoarthritis (OA), which should be available in a professional and a patient version.MethodsA systematic review concerning guidelines dealing with OA was conducted. Furthermore, experts in musculoskeletal diseases were contacted to ensure that 'grey' literature was not excluded. Documents that fulfilled predefined inclusion/exclusion criteria were included and all interventions for OA were extracted and categorised. Based on this list of interventions, a three round Delphi exercise with an international and multidisciplinary expert panel, including patient research partners, was performed to achieve expert consensus.ResultsSix documents were included and used for further analysis. Out of them, 46 interventions have been extracted and 10 consensus based SOC were formulated. In addition, a patient version, written in a lay-understandable wording and in the format of checklist questions was developed. An example is SOC 5: "People with OA should achieve optimal pain control using pharmacological and non-pharmacological means." The matching patient-centred checklist question reads: "Do I know how to control pain associated with OA?"ConclusionsThe SOC for OA will be available in the 23 languages of the European Union to enhance unified information to patients and professionals and to further harmonise the treatment/care of OA within Europe.
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Project description:BackgroundThe idiopathic inflammatory myopathies (IIM, myositis) are a heterogeneous group of chronic autoimmune disorders causing considerable physical and mental health impact. There is a lack of formalised guidance defining best practice for the management of myositis, contributing to inconsistent care provision and some patients feeling isolated and unsupported.To address these issues, we evaluated the clinical services available to adults with myositis in the UK. We then created patient-centred standards of care using a structured process involving patients, their relatives and caregivers, physicians and allied healthcare professionals.MethodsAfter an initial focus group, the clinical services available to patients with myositis were evaluated using a patient-completed questionnaire. Draft standards of care were created, each addressing deficits in care provision identified by patients. In response to feedback, including a two-stage modified Delphi exercise, these draft standards were iteratively improved until consensus was reached. Accompanying plain language versions of the standards of care and an audit tool were also created.ResultsWe identified issues regarding diagnostic pathways, access to specialist services, advice and support regarding employment, medication-related adverse events and the treatment of extra-muscular manifestations. Fifteen standards of care were drafted. After modification, agreement was reached on eleven final standards of care.ConclusionThese patient-centred standards of care for adults with myositis provide a benchmark for the evaluation of local practice. Their implementation will promote consistent good practice across care providers and empower patients when seeking access to local services.
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Project description:PURPOSE: Assessment of current practice with a valid set of indicators is the key to successfully improving the quality of patient-centred care. For improvement purposes, we developed indicators of patient-centred cancer care and tested them on a population of patients with non-small cell lung cancer (NSCLC). METHODS: Recommendations for patient-centred care were extracted from clinical guidelines, and patients were interviewed to develop indicators for assessing the patient-centredness of cancer care. These indicators were tested with regard to psychometric characteristics (room for improvement, applicability, discriminating capacity and reliability) on 132 patients with NSCLC treated in six hospitals in the east Netherlands. Data were collected from patients by means of questionnaires. RESULTS: Eight domains of patient-centred cancer care were extracted from 61 oncology guidelines and 37 patient interviews and were translated into 56 indicators. The practice test amongst patients with NSCLC showed the most room for improvement within the domains 'emotional and psychosocial support', 'physical support' and 'information supply'. Overall, 26 of the 56 indicators had good psychometric characteristics. CONCLUSIONS: Developing a valid set of patient-centred indicators is a first step towards improving the patient centredness of cancer care. Indicators can be based on recommendations from guidelines, but adding patient opinions leads to a more complete picture of patient centredness. The practice test on patients with NSCLC showed that the patient centredness of cancer care can be improved. Our set of indicators may also be useful for future quality assessments for other patients with cancers or chronic diseases.
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Project description:Despite a qualitatively and structurally good care of patients with rheumatoid arthritis (RA) in Germany, there are still potentially amendable deficits in the quality of care. For this reason, the German Society for Rheumatology (DGRh) has therefore decided to ask a group of experts including various stakeholders to develop quality standards (QS) for the care of patients with RA in order to improve the quality of care. The QS are used to determine and quantitatively measure the quality of care, subject to relevance and feasibility. The recently published NICE and ASAS standards and a systematic literature search were used as the basis for development. A total of 8 QS, now published for the first time, were approved with the intention to measure and further optimize the quality of care for patients with RA in Germany.
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Project description:BackgroundTo develop an interdisciplinary care pathway for early rheumatoid arthritis (RA) including referral triage, diagnosis, and management.MethodsOur process was a four-phase approach. In Phase 1, an anonymous survey was electronically distributed to division rheumatologists. This provided data to a small interprofessional working group of rheumatology team members who drafted an initial care pathway informed by evidence-based practice in Phase 2. In Phase 3, an education day was held with approximately 40 physicians (rheumatologists and rheumatology residents), members of our interprofessional team, and two clinic managers to review the proposed care elements through presentations and small group discussions. The care pathway was revised for content and implementation considerations based on feedback received. Implementation of the care pathway and development of strategies for evaluation is ongoing across multiple practice sites (Phase 4).ResultsOur care pathway promotes an approach to patient-centered early RA care using an interdisciplinary approach. Care pathway elements include triage processes, critical diagnostics, pre-treatment screening and vaccinations, and uptake of suggested RA pharmacologic treatment using shared decision-making strategies. Pathway implementation has been facilitated by nursing protocols and evaluation includes continuous monitoring of key indicators.ConclusionThe 'Calgary Early RA Care Pathway' emphasizes a patient-centered and interdisciplinary approach to early RA identification and treatment. Implementation and evaluation of this care pathway is ongoing to support, highest quality care for patients.
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Project description:IntroductionBenepali® was the first etanercept (Enbrel®) biosimilar to be approved in the European Union. Both Benepali and Enbrel are available as autoinjector devices. In a recent survey, nurses from France, Germany, Italy, Spain, and the United Kingdom (UK) reported that their patients with rheumatoid arthritis (RA) would prefer the Benepali autoinjector compared to the Enbrel MYCLIC autoinjector. To determine whether patients' perceptions were similar to those of the nurses, this survey evaluated patients' perceptions and preferences of the Benepali autoinjector versus the Enbrel MYCLIC autoinjector in the same five European countries.MethodsPatients with RA using the Enbrel MYCLIC autoinjector participated in a 25-min, face-to-face questionnaire-interview. Patients were also shown an instructional video and device-handling leaflet, received a live demonstration on the Benepali autoinjector, and had access to both Benepali and Enbrel MYCLIC training autoinjectors. Patients rated the importance of ten autoinjector attributes on a seven-point scale (1 = not important at all; 7 = extremely important) and provided their autoinjector preferences based on specific attributes. Patients also gave their opinion on which autoinjector they would prefer to use for self-injection.ResultsOverall, 220 patients participated in the survey (France, n = 30; Germany, n = 65; Italy, n = 67; Spain, n = 12; UK, n = 46). 'Easy to operate the self-injection' was ranked as the most important attribute (mean score of 6.8), followed by 'easy to grip' (6.5), and 'intuitive/self-explaining usage' (6.3). Patients preferred the Benepali autoinjector, with the attribute of 'easier to operate' being a strong differentiator compared to the Enbrel MYCLIC autoinjector. Most patients (74%) reported that they would prefer to use the Benepali autoinjector over the Enbrel MYCLIC autoinjector. 'Easy to operate the self-injection' and 'button-free autoinjector' were key drivers when selecting an autoinjector.ConclusionsPatients in Europe reported a preference for the Benepali autoinjector compared to the Enbrel MYCLIC autoinjector. This finding is consistent with results from a recently reported nurse survey.FundingBiogen.
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Project description:BackgroundDespite widespread belief in the importance of patient-centred care, it remains difficult to create a system in which all groups work together for the good of the patient. Part of the problem may be that the issue of patient-centred care itself can be used to prosecute intergroup conflict.ObjectiveThis qualitative study of texts examined the presence and nature of intergroup language within the discourse on patient-centred care.MethodsA systematic SCOPUS and Google search identified 85 peer-reviewed and grey literature reports that engaged with the concept of patient-centred care. Discourse analysis, informed by the social identity approach, examined how writers defined and portrayed various groups.ResultsManagers, physicians and nurses all used the discourse of patient-centred care to imply that their own group was patient centred while other group(s) were not. Patient organizations tended to downplay or even deny the role of managers and providers in promoting patient centredness, and some used the concept to advocate for controversial health policies. Intergroup themes were even more obvious in the rhetoric of political groups across the ideological spectrum. In contrast to accounts that juxtaposed in-groups and out-groups, those from reportedly patient-centred organizations defined a 'mosaic' in-group that encompassed managers, providers and patients.ConclusionThe seemingly benign concept of patient-centred care can easily become a weapon on an intergroup battlefield. Understanding this dimension may help organizations resolve the intergroup tensions that prevent collective achievement of a patient-centred system.
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Project description: Not available
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Project description:ObjectivesThe shift to the patient-centred care (PCC) model as a healthcare delivery paradigm calls for systematic measurement and evaluation. In an attempt to develop patient-centred quality indicators (PC-QIs), this study aimed to identify quality indicators that can be used to measure PCC.MethodsDesign: scoping review.Data sourcesstudies were identified through searching seven electronic databases and the grey literature. Search terms included quality improvement, quality indicators, healthcare quality and PCC. Eligibility Criteria: articles were included if they mentioned development and/or implementation of PC-QIs.Data extraction and synthesisextracted data included study characteristics (country, year of publication and type of study/article), patients' inclusion in the development of indicators and type of patient populations and point of care if applicable (eg, in-patient, out-patient and primary care).ResultsA total 184 full-text peer-reviewed articles were assessed for eligibility for inclusion; of these, 9 articles were included in this review. From the non-peer-reviewed literature, eight documents met the criteria for inclusion in this study. This review revealed the heterogeneity describing and defining the nature of PC-QIs. Most PC-QIs were presented as PCC measures and identified as guidelines, surveys or recommendations, and therefore cannot be classified as actual PC-QIs. Out of 502 ways to measure PCC, only 25 were considered to be actual PC-QIs. None of the identified articles implemented the quality indicators in care settings.ConclusionThe identification of PC-QIs is a key first step in laying the groundwork to develop evidence-based PC-QIs. Research is needed to continue the development and implementation of PC-QIs for healthcare quality improvement.
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Project description:BACKGROUND:Different models for care pathways involving both specialist and primary care have been developed to ensure adequate follow-up after discharge. These care pathways have mainly been developed and run by specialist care and have been disease-based. In this study, primary care providers took the initiative to develop a model for integrated care pathways across care levels for older patients in need of home care services after discharge. Initially, the objective was to develop pathways for patients diagnosed with heart failure, COPD and stroke. The aim of this paper is to investigate the process and the experiences of the participants in this developmental work. The participants were drawn from three hospitals, six municipalities and patient organizations in Central Norway. METHODS:This qualitative study used focus group interviews, written material and observations. Representatives from the hospitals, municipalities and patient organizations taking part in the development process were chosen as informants. RESULTS:The development process was very challenging because of the differing perspectives on care and different organizational structures in specialist care and primary care. In this study, the disease perspective, being dominant in specialist care, was not found to be suitable for use in primary health care because of the need to cover a broader perspective including the patient's functioning, social situation and his or her preferences. Furthermore, managing several different disease-based care pathways was found to be unsuitable in home care services, as well as unsuitable for a population characterized by a substantial degree of comorbidity. The outcome of the development process was a consensus that outlined a single, common patient-centred care pathway for transition from hospital to follow-up in primary care. The pathway was suitable for most common diseases and included functional and social aspects as well as disease follow-up, thus merging the differing perspectives. The disease-based care pathways were kept for use within the hospitals. CONCLUSIONS:Disease-based care pathways for older patients were found to be neither feasible nor sustainable in primary care. A common patient-centred care pathway that could meet the needs of multi- morbid patients was recommended.
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