| 1. |
|
|
| 2. |
|
|
| 3. |
|
|
| 4. |
|
|
| 5. |
- McCann, LJ, et al.
(författare)
-
Development of a consensus core dataset in juvenile dermatomyositis for clinical use to inform research
- 2018
-
Ingår i: Annals of the rheumatic diseases. - : BMJ. - 1468-2060 .- 0003-4967. ; 77:2, s. 241-250
-
Tidskriftsartikel (refereegranskat)abstract
- This study aimed to develop consensus on an internationally agreed dataset for juvenile dermatomyositis (JDM), designed for clinical use, to enhance collaborative research and allow integration of data between centres.MethodsA prototype dataset was developed through a formal process that included analysing items within existing databases of patients with idiopathic inflammatory myopathies. This template was used to aid a structured multistage consensus process. Exploiting Delphi methodology, two web-based questionnaires were distributed to healthcare professionals caring for patients with JDM identified through email distribution lists of international paediatric rheumatology and myositis research groups. A separate questionnaire was sent to parents of children with JDM and patients with JDM, identified through established research networks and patient support groups. The results of these parallel processes informed a face-to-face nominal group consensus meeting of international myositis experts, tasked with defining the content of the dataset. This developed dataset was tested in routine clinical practice before review and finalisation.ResultsA dataset containing 123 items was formulated with an accompanying glossary. Demographic and diagnostic data are contained within form A collected at baseline visit only, disease activity measures are included within form B collected at every visit and disease damage items within form C collected at baseline and annual visits thereafter.ConclusionsThrough a robust international process, a consensus dataset for JDM has been formulated that can capture disease activity and damage over time. This dataset can be incorporated into national and international collaborative efforts, including existing clinical research databases.
|
|
| 6. |
|
|
| 7. |
- Prinsen, Cecilia A C, et al.
(författare)
-
Navigating the landscape of core outcome set development in dermatology.
- 2019
-
Ingår i: The Journal of American Academy of Dermatology. - : Elsevier. - 0190-9622 .- 1097-6787. ; 81:1, s. 297-305
-
Tidskriftsartikel (refereegranskat)abstract
- The development of core outcome sets (COSs; ie, a minimum set of core outcomes that should be measured and reported in all trials or in clinical practice for a specific condition) in dermatology is increasing in pace. A total of 44 dermatology-related COS projects have been registered in the online Core Outcome Measures in Effectiveness Trials database (http://www.comet-initiative.org/studies/search) and include studies on 26 different skin diseases. With the increasing number of COSs in dermatology, care is needed to ensure the delivery of high-quality COSs that meet quality standards when using state-of-the-art methods. In 2015, the Cochrane Skin-Core Outcome Set Initiative (CS-COUSIN) was established. CS-COUSIN is an international, multidisciplinary working group aiming to improve the development and implementation of COSs in dermatology. CS-COUSIN has developed guidance on how to develop high-quality COSs for skin diseases and supports dermatology-specific COS initiatives. Currently, 17 COS development groups are affiliated with CS-COUSIN and following standardized COS development processes. To ensure successful uptake of COSs in dermatology, researchers, clinicians, systematic reviewers, guideline developers, and other stakeholders should use existing COSs in their work.
|
|
| 8. |
- Sawatzky, Richard, et al.
(författare)
-
Design and introduction of a quality of life assessment and practice support system: perspectives from palliative care settings.
- 2018
-
Ingår i: Journal of patient-reported outcomes. - : Springer Science and Business Media LLC. - 2509-8020. ; 2
-
Tidskriftsartikel (refereegranskat)abstract
- Quality of life (QOL) assessment instruments, including patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs), are increasingly promoted as a means of enabling clinicians to enhance person-centered care. However, integration of these instruments into palliative care clinical practice has been inconsistent. This study focused on the design of an electronic Quality of Life and Practice Support System (QPSS) prototype and its initial use in palliative inpatient and home care settings. Our objectives were to ascertain desired features of a QPSS prototype and the experiences of clinicians, patients, and family caregivers inregard tothe initial introduction of a QPSS in palliative care, interpreting them in context.We applied an integrated knowledge translation approach in two stages by engaging a total of 71 clinicians, 18 patients, and 17 family caregivers in palliative inpatient and home care settings. Data for Stage I were collected via 12 focus groups with clinicians to ascertain desirable features of a QPSS. Stage II involved 5 focus groups and 24 interviews with clinicians and 35 interviews with patients or family caregivers during initial implementation of a QPSS. The focus groups and interviews were recorded, transcribed, and analyzed using the qualitative methodology of interpretive description.Desirable features focused on hardware (lightweight, durable, and easy to disinfect), software (simple, user-friendly interface, multi-linguistic, integration with e-health systems), and choice of assessment instruments that would facilitate a holistic assessment. Although patient and family caregiver participants were predominantly enthusiastic, clinicians expressed a mixture of enthusiasm, receptivity, and concern regarding the use of a QPSS. The analyses revealed important contextual considerations, including: (a) logistical, technical, and aesthetic considerations regarding the QPSS as a technology, (b) diversity in knowledge, skills, and attitudes of clinicians, patients, and family caregivers regarding the integration of electronic QOL assessments in care, and (c) the need to understand organizational context and priorities in using QOL assessment data.The process of designing and integrating a QPSS in palliative care for patients with life-limiting conditions and their family caregivers is complex and requires extensive consultation with clinicians, administrators, patients, and family caregivers to inform successful implementation.
|
|
| 9. |
- Shore, R. C., et al.
(författare)
-
The Structure and Composition of Deciduous Enamel Affected by Local Hypoplastic Autosomal Dominant Amelogenesis Imperfecta Resulting from an ENAM Mutation
- 2010
-
Ingår i: Cells Tissues Organs. - : S. Karger. - 1422-6405 .- 1422-6421. ; 191:4, s. 301-306
-
Tidskriftsartikel (refereegranskat)abstract
- In a group of families in northern Sweden, a mutation in the ENAM gene (predicted to produce a highly truncated protein) results in the local hypoplastic form of autosomal dominant amelogenesis imperfecta. In this study, sections of deciduous teeth from members of 3 of these families were examined by scanning electron microscopy (SEM) and the enamel mineral was analysed by energy dispersive X-ray spectroscopy (EDX). The sections were also probed with antibodies raised to a conserved sequence of the enamelin protein. Selected intact teeth were first analysed by digital imaging and ascribed with an 'Enamel Defects Index' (EDI) score. SEM of tooth sections revealed disrupted prism morphology and the prisms had a glass-like appearance in some areas. These areas of dysplasia were sometimes irregular but formed regular arrays in others. Comparison of EDI scores with SEM indicated that in one tooth the surface had no measurable defects but significant defects were present in the underlying enamel microstructure. SEM immunohistochemistry with the antibody raised to a fragment of the enamelin protein produced positive, but light, labelling throughout normal enamel. In dysplastic areas, however, the labelling intensity appeared to be reduced. The results indicate that the presence of functional enamelin in the correct amounts is necessary for correct prism morphogenesis. In addition, a combination of EDI and structural analysis indicate that defects in enamel microstructure are not necessarily visible as defects on the surface of the tooth, suggesting the possibility, at least, that some instances of under-diagnosis may occur. Copyright (C) 2009 S. Karger AG, Basel
|
|
| 10. |
- Öhlén, Joakim, 1958, et al.
(författare)
-
Is it possible to integrate tensions in opposing views related to notions of individualization and generalization in palliative care?
- 2015
-
Ingår i: International Philosophy Of Nursing Society (IPONS) Conference. August 24-26, Stockholm, Sweden..
-
Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- There are concurrent societal, demographic and epidemiological conflicting challenges related to palliative care. Trends in globalization have led to culturally diverse and pluralistic societies with a range of perspectives of death and dying, and different expectations for palliative care. In addition, people are living longer with life-limiting conditions. Although specialized palliative care is available, including in Sweden and Canada, most people who are dying from chronic life-limiting conditions do not receive specialized palliative care, but rather utilize other health services, such as chronic disease management, primary care, intensive care or emergency room services. Within the field of palliative care the aim of the project is to integrate person-centred perspectives with standardization and measurement (including standard care plans, evidence-based practice guidelines, and patient- and family-reported outcomes and experience measures). Specifically, this presentation will focus on the initial and tentative exploration of tensions related to notions of individualization as opposed to generalization in palliative care. For the initial exploration we applied different lenses and perspectives including equity, cross-cultural, global health, person-centeredness, measurement validation, and quality indicators. Then tentative tensions between apparently opposing views were identified. For the integration of different views of international relevance to palliative care, a hermeneutic approach that is dialectic and communicative (based on Paul Ricoeur’s hermeneutics) was applied. This perspective articulates possibilities to relate opposing views without neutralizing or diffusing their central features; thus a theoretical resource to not end up in a fixed or oversimplifying “model”. This analysis is on-going. As a Swedish-Canadian collaborative initiative, with senior and junior researchers and graduate students from both countries, we target conceptual issues influencing ways societies and professionals respond to pressing, global needs in relation to the care of people with chronic life-limiting conditions approaching end-of-life.
|
|
