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  • 1
    Online Resource
    Online Resource
    Fictitious cases as a methodology to discuss sensitive health topics in focus groups
    Informa UK Limited ; 2023
    In:  International Journal of Qualitative Studies on Health and Well-being Vol. 18, No. 1 ( 2023-12-31)
    Details
    In: International Journal of Qualitative Studies on Health and Well-being, Informa UK Limited, Vol. 18, No. 1 ( 2023-12-31)
    Type of Medium: Online Resource
    ISSN: 1748-2631
    URL: Article
    DOI: 10.1080/17482631.2023.2233253
    Language: English
    Publisher: Informa UK Limited
    Publication Date: 2023
    detail.hit.zdb_id: 2232726-5
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  • 2
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    Informationens ironi: Patienters frie adgang til sundhedsdata
    Det Kgl. Bibliotek/Royal Danish Library ; 2022
    In:  Tidsskrift for Forskning i Sygdom og Samfund Vol. 19, No. 36 ( 2022-06-25), p. 39-57
    Details
    In: Tidsskrift for Forskning i Sygdom og Samfund, Det Kgl. Bibliotek/Royal Danish Library, Vol. 19, No. 36 ( 2022-06-25), p. 39-57
    Abstract: Med indførslen af sundhed.dk har borgere i Danmark fået digital adgang til deres egne helbredsoplysninger såsom test- og screeningsvar, journalnotater osv. Den stigende trans- parens i sundhedsvæsenet påstås at fremme medinddragelse og mulighed for at engagere sig i eget helbred. I denne artikel fokuserer vi derfor på, hvad der sker i praksis, når forskellige mennesker tilgår deres helbredsoplysninger på sundhed.dk. Sammensat af to etnografiske studier og et interviewstudie viser vi, hvordan testsvar for deltagerne er svære at forstå, og hvordan abnorme testsvar, selv uden klinisk betydning, skaber bekymring og angst – også længe efter at svaret er givet og en eventuel behandling ovre. Med udgangspunkt i en teoretisk diskussion af hvordan det postmoderne informationssamfund beror på troen på oplysning, argumenterer vi for, at målet om at skabe mere tryghed gennem adgang til egen helbredsjournal, faktisk for nogle i stedet kan skabe utryghed, og ligefrem skade den enkelte, det vi kalder informationens ironi. Ved at bruge dette begreb diskuterer vi, hvordan di- gitale helbredsjournaler som sundhed.dk ikke i sig selv fremmer demokratiske rettigheder som inddragelse og adgang til egne data, men ligefrem kan skade. Vi argumenterer derfor for, at digitale helbredsinitiativer også underlægges en etisk afvejning af gavn og skade.
    Type of Medium: Online Resource
    ISSN: 1904-7975 , 1604-3405
    URL: Article
    DOI: 10.7146/tfss.v19i36.133049
    Language: Unknown
    Publisher: Det Kgl. Bibliotek/Royal Danish Library
    Publication Date: 2022
    detail.hit.zdb_id: 2649795-5
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  • 3
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    Women's experiences of age‐related discontinuation from mammography screening: A qualitative interview study
    Wiley ; 2023
    In:  Health Expectations Vol. 26, No. 3 ( 2023-06), p. 1096-1106
    Details
    In: Health Expectations, Wiley, Vol. 26, No. 3 ( 2023-06), p. 1096-1106
    Abstract: In Denmark, women are discontinued from mammography screening at age 69 due to decreased likelihood of benefits and increased likelihood of harm. The risk of harm increases with age and includes false positives, overdiagnosis and overtreatment. In a questionnaire survey, 24 women expressed unsolicited concerns about being discontinued from mammography screening due to age. This calls for further investigation of experiences related to discontinuation from screening. Methods We invited the women, who had left comments on the questionnaire, to participate in in‐depth interviews with the purpose to explore their reactions, preferences, and conceptions about mammography screening and discontinuation. The interviews lasted 1–4 h and were followed up with a telephone interview 2 weeks after the initial interview. Results The women had high expectations of the benefits of mammography screening and felt that participation was a moral obligation. Following that, they perceived the screening discontinuation as a result of societal age discrimination and consequently felt devalued. Further, the women perceived the discontinuation as a health threat, felt more susceptible to late diagnosis and death, and therefore sought out new ways to control their risk of breast cancer. Conclusion Our findings indicate that the age‐related discontinuation from mammography screening might be of more importance than previously assumed. This study raises important questions about screening ethics, and we encourage research to explore this in other settings. Patient and Public Contribution This study was conducted as a result of the women's unsolicited concerns about being discontinued from screening. This particular group contributed to the study with their own statements, interpretations and perspectives on the discontinuation of screening, and the initial analysis of data was discussed with the women during follow‐up interviews.
    Type of Medium: Online Resource
    ISSN: 1369-6513 , 1369-7625
    URL: Issue
    URL: Article
    DOI: 10.1111/hex.v26.3
    DOI: 10.1111/hex.13723
    Language: English
    Publisher: Wiley
    Publication Date: 2023
    detail.hit.zdb_id: 2006357-X
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  • 4
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    Measuring needs-based quality of life and self-perceived health inequity in patients with multimorbidity: investigating psychometric measurement properties of the MultiMorbidity Questionnaire (MMQ) using primarily Rasch models
    Springer Science and Business Media LLC ; 2023
    In:  Journal of Patient-Reported Outcomes Vol. 7, No. 1 ( 2023-09-18)
    Details
    In: Journal of Patient-Reported Outcomes, Springer Science and Business Media LLC, Vol. 7, No. 1 ( 2023-09-18)
    Abstract: Multimorbidity is a burden for the individual and to the healthcare sector worldwide, leading to a rising number of intervention studies towards this patient group. To measure a possible effect of such interventions, an adequate patient-reported outcome measure (PROM) is essential. The aim of this study was to assess the draft MultiMorbidity Questionnaire (MMQ), a PROM measuring needs-based quality of life and self-perceived inequity in patients with multimorbidity, for its psychometric properties and to adjust it accordingly to create a content- and construct valid measure. Methods The draft MMQ was sent to 1198 eligible respondents with multimorbidity. Modern test theory and classical test theory were used to analyse data. Dimensionality of the suggested domains and invariance of the items were assessed through item analysis, examining the fit to a psychometric model. Results The psychometric analyses were based on responses from 390 patients with multimorbidity. In the MMQ1, measuring needs-based QoL, evidence of six unidimensional scales was confirmed: physical ability (6 items), worries (6 items), limitations in everyday life (10 items), my social life (6 items), self-image (6 items), and personal finances (3 items). The psychometric analyses of the MMQ2 outlined four unidimensional scales measuring the feeling of Self-perceived inequity in patients with multimorbidity: experiences of being stigmatised (4–5 items), Experiences of insufficient understanding of the burden of disease (3 items), Experiences of not being seen and heard (4 items), Experience of powerlessness (5 items). These scales are relevant for patients’ with multimorbidity encounters with (1) their general pratitioner, (2) staff at their general practitioner’s surgery, (3) healthcare professionals, (4) staff at the local authorities and (5) friends, family, and others. Conclusion The MMQ, a QoL measure for patients living with multimorbidity has been validated: the MMQ1 is a condition-specific PROM with adequate psychometric properties designed to measure needs-based QoL. The MMQ2 measuring Self-perceived inequity, has also been found to possess adequate measurement properties; however due to the risk of type 2 error a revalidation of MMQ2 is suggested.
    Type of Medium: Online Resource
    ISSN: 2509-8020
    URL: Article
    DOI: 10.1186/s41687-023-00633-4
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2023
    detail.hit.zdb_id: 2906081-3
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  • 5
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    Conceptualisation of a measurement framework for Needs-based Quality of Life among patients with multimorbidity
    Springer Science and Business Media LLC ; 2022
    In:  Journal of Patient-Reported Outcomes Vol. 6, No. 1 ( 2022-12)
    Details
    In: Journal of Patient-Reported Outcomes, Springer Science and Business Media LLC, Vol. 6, No. 1 ( 2022-12)
    Abstract: Multimorbidity is both an individual and societal problem. For society, patients with multimorbidity increase healthcare costs. For the individual, living with multimorbidity is complex, and there is an inverse relationship between a patient's Quality of Life (QoL) and their number of chronic conditions. Numerous intervention studies target these problems, yet there is no multimorbidity-specific patient-reported outcome measure (PROM) developed specifically for this group with adequate measurement properties to assess QoL. This study explores what overall needs regarding QoL are affected by living with multimorbidity through qualitative interviews. With this, we conceptualise Needs-based QoL specifically for this group, ensuring high content validity (regarding relevance and comprehensiveness) of using the Needs-based approach to measure their QoL. This is essential as this preliminary study leads to the development of the MultiMorbidity Questionnaire (MMQ), a PROM measuring QoL among patients with multimorbidity. Methods This study draws upon qualitative interviews with fifteen patients with multimorbidity based on a semi-structured interview guide following the Needs-based approach. This approach allowed the patients to cover needs relevant for their QoL in relation to the complexities of living with multimorbidity. The transcribed interviews were thematically analysed, inspired by Braun and Clarke’s reflexive approach. Results Analysis of the interviews resulted in the construction of six intertwined domains relevant to patients with multimorbidity, covering their Needs-based QoL; “Physical ability”, “Self-determination”, “Security”, “Partner and social life”, “Self-image”, and “Personal finances”. “Physical limitations” and “Personal finances” were stated as core needs implicating the other domains. Conclusion This study shows six intertwined overall domains relevant for patients with multimorbidity regarding their Needs-based QoL; “Physical ability”, “Self-determination”, “Security”, “Partner and social life”, “Self-image”, and “Personal finances”. These needs are relevant in a Danish context, with a generally high standard of living. Based on this conceptual framework of Need-based QoL for patients with multimorbidity, we will develop items for a new patient-reported outcome measure called the MMQ.
    Type of Medium: Online Resource
    ISSN: 2509-8020
    URL: Article
    DOI: 10.1186/s41687-022-00489-0
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2022
    detail.hit.zdb_id: 2906081-3
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  • 6
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    Effectiveness of an adaptive, multifaceted intervention to enhance care for patients with complex multimorbidity in general practice: protocol for a pragmatic cluster randomised controlled trial (the MM600 trial)
    BMJ ; 2024
    In:  BMJ Open Vol. 14, No. 2 ( 2024-02), p. e077441-
    Details
    In: BMJ Open, BMJ, Vol. 14, No. 2 ( 2024-02), p. e077441-
    Abstract: Patients with complex multimorbidity face a high treatment burden and frequently have low quality of life. General practice is the key organisational setting in terms of offering people with complex multimorbidity integrated, longitudinal, patient-centred care. This protocol describes a pragmatic cluster randomised controlled trial to evaluate the effectiveness of an adaptive, multifaceted intervention in general practice for patients with complex multimorbidity. Methods and analysis In this study, 250 recruited general practices will be randomly assigned 1:1 to either the intervention or control group. The eligible population are adult patients with two or more chronic conditions, at least one contact with secondary care within the last year, taking at least five repeat prescription drugs, living independently, who experience significant problems with their life and health due to their multimorbidity. During 2023 and 2024, intervention practices are financially incentivised to provide an extended consultation based on a patient-centred framework to eligible patients. Control practices continue care as usual. The primary outcome is need-based quality of life. Outcomes will be evaluated using linear and logistic regression models, with clustering considered. The analysis will be performed as intention to treat. In addition, a process evaluation will be carried out and reported elsewhere. Ethics and dissemination The trial will be conducted in compliance with the protocol, the Helsinki Declaration in its most recent form and good clinical practice recommendations, as well as the regulation for informed consent. The study was submitted to the Danish Capital Region Ethical Committee (ref: H-22041229). As defined by Section 2 of the Danish Act on Research Ethics in Research Projects, this project does not constitute a health research project but is considered a quality improvement project that does not require formal ethical approval. All results from the study (whether positive, negative or inconclusive) will be published in peer-reviewed journals. Trial registration number NCT05676541 .
    Type of Medium: Online Resource
    ISSN: 2044-6055 , 2044-6055
    URL: Article
    URL: Article
    URL: Article
    URL: Article
    URL: Article
    URL: Article
    DOI: 10.1136/bmjopen-2023-077441
    DOI: 10.1136/bmjopen-2023-077441.supp1
    DOI: 10.1136/bmjopen-2023-077441.supp2
    DOI: 10.1136/bmjopen-2023-077441.supp3
    DOI: 10.1136/bmjopen-2023-077441.supp4
    DOI: 10.1136/bmjopen-2023-077441.supp5
    Language: English
    Publisher: BMJ
    Publication Date: 2024
    detail.hit.zdb_id: 2599832-8
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  • 7
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    Data as symptom: Doctors’ responses to patient-provided data in general practice
    SAGE Publications ; 2023
    In:  Social Studies of Science Vol. 53, No. 4 ( 2023-08), p. 522-544
    Details
    In: Social Studies of Science, SAGE Publications, Vol. 53, No. 4 ( 2023-08), p. 522-544
    Abstract: People are increasingly able to generate their own health data through new technologies such as wearables and online symptom checkers. However, generating data is one thing, interpreting them another. General practitioners (GPs) are likely to be the first to help with interpretations. Policymakers in the European Union are investing heavily in infrastructures to provide GPs access to patient measurements. But there may be a disconnect between policy ambitions and the everyday practices of GPs. To investigate this, we conducted semi-structured interviews with 23 Danish GPs. According to the GPs, patients relatively rarely bring data to them. GPs mostly remember three types of patient-generated data that patients bring to them for interpretation: heart and sleep measurements from wearables and results from online symptom checkers. However, they also spoke extensively about data work with patient queries concerning measurements from the GPs’ own online Patient Reported Outcome system and online access to laboratory results. We juxtapose GP reflections on these five data types and between policy ambitions and everyday practices. These data require substantial recontextualization work before the GPs ascribe them evidential value and act on them. Even when they perceived as actionable, patient-provided data are not approached as measurements, as suggested by policy frameworks. Rather, GPs treat them as analogous to symptoms—that is to say, GPs treat patient-provided data as subjective evidence rather than authoritative measures. Drawing on Science and Technology Studies (STS) literature,we suggest that GPs must be part of the conversation with policy makers and digital entrepreneurs around when and how to integrate patient-generated data into healthcare infrastructures.
    Type of Medium: Online Resource
    ISSN: 0306-3127 , 1460-3659
    URL: Article
    DOI: 10.1177/03063127231164345
    Language: English
    Publisher: SAGE Publications
    Publication Date: 2023
    detail.hit.zdb_id: 1482712-8
    SSG: 11
    SSG: 3,4
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  • 8
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    Overdiagnosis in malignant melanoma: a scoping review
    BMJ ; 2023
    In:  BMJ Evidence-Based Medicine
    Details
    In: BMJ Evidence-Based Medicine, BMJ
    Abstract: We aimed to systematically identify and scrutinise published empirical evidence about overdiagnosis in malignant melanoma and examine how frequent overdiagnosis of melanoma is and whether this is related to different types of interventions or diagnostic technologies. Design and setting Empirical studies that discussed overdiagnosis in malignant melanoma were eligible, including qualitative and quantitative studies in any type of population, age group and geographical location. We excluded studies that did not include empirical data, studies that only mentioned ‘overdiagnosis’ without addressing it further and studies that used the term overdiagnosis for cases of misdiagnosis or false positives. We developed the search strategy in cooperation with an information specialist. We searched five databases on 21 April 2022: MEDLINE, Embase, CINAHL, PsycINFO and Cochrane Library. This scoping review adheres to The JBI methodology and Prefered Reporting Items for Systematic Reviews and Meta-analyses extension for Scoping reviews (PRISMA-ScR). Two reviewers independently screened titles, abstracts and full texts for inclusion and extracted data from the included studies. The data extracted include study characteristics, population details, research question, the context and the study’s main results. Results Our search resulted in 1134 potentially relevant studies. 35 studies were included: 29 register studies, 3 cohort studies, 1 case–control study, 1 survey study and 1 randomised controlled trial. Most register studies examined trends in melanoma incidence and/or mortality and found a significant increase in incidence between 0.39% and 6.6% annually and a little or no increase in mortality. Three cohort studies and one case–control study showed that skin screening was associated with increased detection of melanoma; especially in situ or thin invasive melanoma. Three studies estimated the degree of overdiagnosis which ranged from 29% to 60%. Conclusions Epidemiological data suggest a high degree of overdiagnosis in malignant melanoma. Studies that examined the association between skin screening and malignant melanoma all found increased detection of melanomas, mostly thin and in situ melanomas, which raises concern about overdiagnosis.
    Type of Medium: Online Resource
    ISSN: 2515-446X , 2515-4478
    URL: Article
    DOI: 10.1136/bmjebm-2023-112341
    Language: English
    Publisher: BMJ
    Publication Date: 2023
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  • 9
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    The impact of influences in a medical screening programme invitation: a randomized controlled trial
    Oxford University Press (OUP) ; 2023
    In:  European Journal of Public Health Vol. 33, No. 3 ( 2023-06-01), p. 509-514
    Details
    In: European Journal of Public Health, Oxford University Press (OUP), Vol. 33, No. 3 ( 2023-06-01), p. 509-514
    Abstract: Invitations to screening programmes may include influences that are intending to increase the participation rates. This study had two objectives: (i) to assess if different categories of influences had a significant effect on the intention to participate in a screening programme for a fictitious disease and (ii) whether participants were aware of the influences, and if the intention to participate was associated to this awareness. Methods A seven-armed randomized controlled trial. Six hundred passers-by were randomly allocated to receive one of seven pamphlets inviting to a fictitious screening programme (neutral, relative risk reductions, misrepresentation of harms, pre-booked appointment, recommendation of participation, fear appeals, all combined). Participants were surveyed to assess (i) intention to participate (ITP) in the screening programme and (ii) awareness of an exerted influence. Chi-squared test was used to calculate the effect of the influences on ITP and the association of ITP with indicating awareness of an exerted influence and correctly locating an influence. Results Five hundred and eighty-nine participants were included for analysis. ITP was significantly increased (P  & lt; 0.05) in three pamphlets (misrepresentation of harms, fear appeals, all combined) [adjusted odds ratio (OR) 4.84, 95% confidence interval (CI): 2.54–9.23; OR 2.45, 95% CI: 1.31–4.59; OR 9.02, 95% CI: 4.44–18.34]. A percentage of 60.0–78.3 participants did not indicate awareness. Awareness was associated with a decreased ITP for those who could locate the influence (OR 0.39, 95% CI: 0.21–0.72) and those who failed to locate the influence (OR 0.47, 95% CI: 0.30–0.74). Conclusion The application of influences should be carefully considered for interventions where an informed choice is desired.
    Type of Medium: Online Resource
    ISSN: 1101-1262 , 1464-360X
    URL: Article
    DOI: 10.1093/eurpub/ckad067
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2023
    detail.hit.zdb_id: 2033525-8
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  • 10
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    Colon cancer diagnosed in patients with non-specific symptoms – comparisons between diagnostic paradigms
    Informa UK Limited ; 2023
    In:  Acta Oncologica Vol. 62, No. 3 ( 2023-03-04), p. 272-280
    Details
    In: Acta Oncologica, Informa UK Limited, Vol. 62, No. 3 ( 2023-03-04), p. 272-280
    Type of Medium: Online Resource
    ISSN: 0284-186X , 1651-226X
    URL: Article
    DOI: 10.1080/0284186X.2023.2185910
    Language: English
    Publisher: Informa UK Limited
    Publication Date: 2023
    detail.hit.zdb_id: 1492623-4
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