Dataset Information

Which Dimensions of Patient-Centeredness Matter? - Results of a Web-Based Expert Delphi Survey.

ABSTRACT: Present models and definitions of patient-centeredness revealed a lack of conceptual clarity. Based on a prior systematic literature review, we developed an integrative model with 15 dimensions of patient-centeredness. The aims of this study were to 1) validate, and 2) prioritize these dimensions.A two-round web-based Delphi study was conducted. 297 international experts were invited to participate. In round one they were asked to 1) give an individual rating on a nine-point-scale on relevance and clarity of the dimensions, 2) add missing dimensions, and 3) prioritize the dimensions. In round two, experts received feedback about the results of round one and were asked to reflect and re-rate their own results. The cut-off for the validation of a dimension was a median < 7 on one of the criteria.105 experts participated in round one and 71 in round two. In round one, one new dimension was suggested and included for discussion in round two. In round two, this dimension did not reach sufficient ratings to be included in the model. Eleven dimensions reached a median ? 7 on both criteria (relevance and clarity). Four dimensions had a median < 7 on one or both criteria. The five dimensions rated as most important were: patient as a unique person, patient involvement in care, patient information, clinician-patient communication and patient empowerment.11 out of the 15 dimensions have been validated through experts' ratings. Further research on the four dimensions that received insufficient ratings is recommended. The priority order of the dimensions can help researchers and clinicians to focus on the most important dimensions of patient-centeredness. Overall, the model provides a useful framework that can be used in the development of measures, interventions, and medical education curricula, as well as the adoption of a new perspective in health policy.

SUBMITTER: Zill JM

PROVIDER: S-EPMC4635011 | biostudies-literature | 2015

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Which Dimensions of Patient-Centeredness Matter? - Results of a Web-Based Expert Delphi Survey.

Zill Jördis M JM Scholl Isabelle I Härter Martin M Dirmaier Jörg J

PloS one 20151105 11

<h4>Background</h4>Present models and definitions of patient-centeredness revealed a lack of conceptual clarity. Based on a prior systematic literature review, we developed an integrative model with 15 dimensions of patient-centeredness. The aims of this study were to 1) validate, and 2) prioritize these dimensions.<h4>Method</h4>A two-round web-based Delphi study was conducted. 297 international experts were invited to participate. In round one they were asked to 1) give an individual rating on ...[more]

PMID: 26539990

Similar Datasets

Project description:BackgroundDepression and anxiety are the most common mental health conditions, and they were identified as leading contributors to global disability in 2016. People with these conditions rely on Web-based resources as a source of accurate health information, convenient and effective treatment, and essential social support. However, a recent systematic review revealed several potentially limiting difficulties that this group experiences online and also suggested that there is a partial understanding of these difficulties as only difficulties associated with neurocognitive, but not sociocognitive, deficits were identified. Therefore, this study fills this knowledge gap and contributes to a more robust and fuller understanding of the difficulties this group experiences online.ObjectiveThe objective of this study was to identify the difficulties people with depression and anxiety experience when using the Web and the Web activities that are most associated with the experience of difficulties.MethodsThe study employed data triangulation using face-to-face semistructured interviews with 21 participants affected by depression and anxiety and a comparison group (7 participants) without mental disorders (study 1) as well as a persona-based expert online survey with 21 mental health practitioners (MHPs) who treated people with depression and anxiety (study 2). Framework analysis for both studies proceeded through 5 stages: (1) familiarization, (2) identifying a thematic framework, (3) indexing, (4) charting, and (5) mapping and interpretation.ResultsIn study 1, 167 difficulties were identified from the experiences of participants in the depression and anxiety group were discussed within the context of 81 Web activities, services, and features. From these, 4 themes and 12 subthemes describing the difficulties people with depression and anxiety experienced online were identified. Difficulties relating to the subtheme lack of control over access and usage were the most common difficulties experienced by participants in the depression and anxiety group (19/21). Sixteen difficulties identified from the experiences of participants in the comparison group were discussed within the context of 11 Web activities, services, and features. Most participants in the comparison group (6/7) contributed to the subtheme describing difficulties with unexpected and irrelevant content. In study 2, researchers identified 3 themes and 10 subthemes that described the perceived difficulties people with depression and anxiety might experience online as reported by MHPs. Practitioners linked these difficulties with 22 common impairments, limitations in activities of daily life, and diagnostic criteria associated with depression and anxiety.ConclusionsPeople with depression and anxiety also experience difficulties when using the Web that are related to the sociocognitive deficits associated with their conditions. MHPs have a good awareness of the difficulties that people with depression and anxiety are likely to experience when using the Web. This investigation has contributed to a fuller understanding of these difficulties and provides innovative guidance on how to remove and reduce them for people with depression and anxiety when using the Web.International registered report identifier (irrid)RR2-10.1007/978-3-319-21006-3_3.

Project description:BackgroundTropical infectious diseases are called neglected, because they are, inter alia, characterized by an R&D deficit. A similar deficit exists for rare (orphan) diseases which neither promise a sufficient return on R&D investment. To encourage the development of treatments for rare diseases, orphan drug acts were created which contain financial and non-financial incentives for the pharmaceutical industry. Similar instruments aimed exclusively at neglected diseases do not yet exist. Proposals for a regulatory approach to promote R&D for neglected diseases include the application of selected orphan drug incentives, or the implementation of a Medical Research and Development Treaty (MRDT) with national funding obligations for medical R&D. We compiled and analyzed experts' opinions on causes for the treatment deficit for neglected diseases and on desirable and feasible measures to promote neglected disease R&D. Hereby, the focus was on mechanisms contained in orphan drug regulations and in the Medical Research and Development Treaty draft (Discussion draft 4, 2005). Lastly, we solicited experts' opinions on the desirability and feasibility of a regulatory instrument to foster R&D for neglected diseases.MethodsAn international online-Delphi survey was conducted with 117 (first round) and 56 (second round) experts of different professional backgrounds and professional affiliations who formulated and ranked causes and solutions related to the treatment deficit for neglected diseases.ResultsIn both rounds of survey, the majority of the participating experts (88.4% first round, 86.8% second round) advocated the development of a regulatory instrument to promote R&D for neglected diseases. Most experts (77.9% first round, 79.3% second round) also considered this to be a feasible option. With the exception of market exclusivity, which was viewed critically, key provisions contained in orphan drug regulations were judged favorably also for neglected diseases. A majority (87.1% first round, 77.2% second round) supported national funding obligations for neglected diseases which are proposed by the Medical Research and Development Treaty draft.ConclusionsWhile not all features of orphan drug regulations and of the MRDT draft received equal support, the view was expressed that a regulatory instrument would be a desirable and feasible measure to promote R&D for neglected diseases.

Project description:BackgroundThere are limited real-world data on the diagnostic experiences of patients with psoriatic arthritis (PsA), including medical care sought and potential barriers to diagnosis. We aim to describe patient experiences related to receiving a PsA diagnosis.MethodsOurs was a mixed-method, 2-phase study. Phase 1 comprised concept elicitation and cognitive interviews with clinical experts and adults diagnosed with PsA to develop a cross sectional, web-based survey. US adults with a self-reported PsA diagnosis were recruited through a patient support community (CreakyJoints), an online patient research registry (ArthritisPower), and social media outreach. In Phase 2, the online survey collected data on sociodemographics, clinical symptoms, disease burden, and diagnosis history of survey respondents with PsA.ResultsOf the 203 respondents included, 172 (84.7%) were female, and the mean (SD) age was 51.6 (10.8) years. The time between seeking medical attention and receiving a diagnosis was < 6 months for 69 respondents, 6 months to 4 years for 68 respondents, and ≥ 5 years for 66 respondents. Most respondents sought care from general practitioners (79.8%) and rheumatologists (66.5%). Common initial symptoms that led respondents to seek medical attention were joint pain (70.0%) and stiffness (53.7%). Among the initial symptoms that led respondents to seek care, joint pain, swollen joints, and sausage-like fingers or toes (indicating dactylitis) were more common among respondents with shorter time to diagnosis, whereas stiffness, fatigue, enthesitis (indicated by foot problems, tendon and ligament pain), and back pain were more common among respondents with longer time to diagnosis. Common misdiagnoses were psychosomatic issues (26.6%) and osteoarthritis (21.7%). Respondents with shorter times to diagnosis had lower frequencies of misdiagnosis.ConclusionsRespondents with PsA reported delays in diagnosis and misdiagnoses on their journey to a PsA diagnosis. Symptom differences, such as enthesitis and stiffness, were noted among respondents with shorter vs longer time to diagnosis. Increased understanding of diagnostic barriers may lead to earlier diagnosis and appropriate management to improve outcomes.

Dataset Information

Which Dimensions of Patient-Centeredness Matter? - Results of a Web-Based Expert Delphi Survey.

Publications

Which Dimensions of Patient-Centeredness Matter? - Results of a Web-Based Expert Delphi Survey.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets