35 results on '"Ninov, Lyudmil"'
Search Results
2. Development of an updated, standardized, patient-centered outcome set for lung cancer
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de Rooij, Belle H., van den Hurk, Corina, Smaardijk, Veerle, Fernandez-Ortega, Paz, Navarro-Martin, Arturo, Barberio, Lidia, Guckenberger, Matthias, Schmid, Severin, Walraven, Iris, Vallow, Susan, Kotsi, Christina, Preusser, Matthias, Mosor, Erika, Klok, Jente M., Becker, Annemarie, Milani, Alessandra, Ninov, Lyudmil, and van de Poll-Franse, Lonneke V.
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- 2022
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3. The Perspectives of Patients with Chronic Diseases and Their Caregivers on Self-Management Interventions: A Scoping Review of Reviews
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Niño de Guzmán Quispe, Ena, Martínez García, Laura, Orrego Villagrán, Carola, Heijmans, Monique, Sunol, Rosa, Fraile-Navarro, David, Pérez-Bracchiglione, Javier, Ninov, Lyudmil, Salas-Gama, Karla, Viteri García, Andrés, and Alonso-Coello, Pablo
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- 2021
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4. Standardising personalised diabetes care across European health settings:A person-centred outcome set agreed in a multinational Delphi study
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Porth, Ann-Kristin, Huberts, Anouk Sjoukje, Rogge, Alize, Benard, Angele Helene Marie, Forbes, Angus, Strootker, Anja, Del Pozo, Carmen Hurtado, Kownatka, Dagmar, Hopkins, David, Nathanson, David, Aanstoot, Henk-Jan, Soderberg, Jeanette, Eeg-Olofsson, Katarina, Hamilton, Kathryn, Delbecque, Laure, Ninov, Lyudmil, Due-Christensen, Mette, Leutner, Michael, Simo, Rafael, Vikstrom-Greve, Sara, Roessner, Sophia, Flores, Vanesa, Seidler, Yuki, Hasler, Yvonne, Stamm, Tanja, Kautzky-Willer, Alexandra, Porth, Ann-Kristin, Huberts, Anouk Sjoukje, Rogge, Alize, Benard, Angele Helene Marie, Forbes, Angus, Strootker, Anja, Del Pozo, Carmen Hurtado, Kownatka, Dagmar, Hopkins, David, Nathanson, David, Aanstoot, Henk-Jan, Soderberg, Jeanette, Eeg-Olofsson, Katarina, Hamilton, Kathryn, Delbecque, Laure, Ninov, Lyudmil, Due-Christensen, Mette, Leutner, Michael, Simo, Rafael, Vikstrom-Greve, Sara, Roessner, Sophia, Flores, Vanesa, Seidler, Yuki, Hasler, Yvonne, Stamm, Tanja, and Kautzky-Willer, Alexandra
- Abstract
ObjectiveStandardised person-reported outcomes (PRO) data can contextualise clinical outcomes enabling precision diabetes monitoring and care. Comprehensive outcome sets can guide this process, but their implementation in routine diabetes care has remained challenging and unsuccessful at international level. We aimed to address this by developing a person-centred outcome set for Type 1 and Type 2 diabetes, using a methodology with prospects for increased implementability and sustainability in international health settings.MethodsWe used a three-round questionnaire-based Delphi study to reach consensus on the outcome set. We invited key stakeholders from 19 countries via purposive snowball sampling, namely people with diabetes (N = 94), healthcare professionals (N = 65), industry (N = 22) and health authorities (N = 3), to vote on the relevance and measurement frequency of 64 previously identified clinical and person-reported outcomes. Subsequent consensus meetings concluded the study.ResultsThe list of preliminary outcomes was shortlisted via the consensus process to 46 outcomes (27 clinical outcomes and 19 PROs). Two main collection times were recommended: (1) linked to a medical visit (e.g. diabetes-specific well-being, symptoms and psychological health) and (2) annually (e.g. clinical data, general well-being and diabetes self management-related outcomes).ConclusionsPROs are often considered in a non-standardised way in routine diabetes care. We propose a person-centred outcome set for diabetes, specifically considering psychosocial and behavioural aspects, which was agreed by four international key stakeholder groups. It guides standardised collection of meaningful outcomes at scale, supporting individual and population level healthcare decision making. It will be implemented and tested in Europe as part of the H2O project.
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- 2024
5. Standardising personalised diabetes care across European health settings: A person‐centred outcome set agreed in a multinational Delphi study.
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Porth, Ann‐Kristin, Huberts, Anouk Sjoukje, Rogge, Alizé, Bénard, Angèle Helene Marie, Forbes, Angus, Strootker, Anja, Del Pozo, Carmen Hurtado, Kownatka, Dagmar, Hopkins, David, Nathanson, David, Aanstoot, Henk‐Jan, Soderberg, Jeanette, Eeg‐Olofsson, Katarina, Hamilton, Kathryn, Delbecque, Laure, Ninov, Lyudmil, Due‐Christensen, Mette, Leutner, Michael, Simó, Rafael, and Vikstrom‐Greve, Sara
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DIABETES prevention ,TYPE 1 diabetes ,RESEARCH funding ,PRIMARY health care ,QUESTIONNAIRES ,STATISTICAL sampling ,JUDGMENT sampling ,PATIENT-centered care ,TYPE 2 diabetes ,DELPHI method ,HEALTH outcome assessment - Abstract
Objective: Standardised person‐reported outcomes (PRO) data can contextualise clinical outcomes enabling precision diabetes monitoring and care. Comprehensive outcome sets can guide this process, but their implementation in routine diabetes care has remained challenging and unsuccessful at international level. We aimed to address this by developing a person‐centred outcome set for Type 1 and Type 2 diabetes, using a methodology with prospects for increased implementability and sustainability in international health settings. Methods: We used a three‐round questionnaire‐based Delphi study to reach consensus on the outcome set. We invited key stakeholders from 19 countries via purposive snowball sampling, namely people with diabetes (N = 94), healthcare professionals (N = 65), industry (N = 22) and health authorities (N = 3), to vote on the relevance and measurement frequency of 64 previously identified clinical and person‐reported outcomes. Subsequent consensus meetings concluded the study. Results: The list of preliminary outcomes was shortlisted via the consensus process to 46 outcomes (27 clinical outcomes and 19 PROs). Two main collection times were recommended: (1) linked to a medical visit (e.g. diabetes‐specific well‐being, symptoms and psychological health) and (2) annually (e.g. clinical data, general well‐being and diabetes self management‐related outcomes). Conclusions: PROs are often considered in a non‐standardised way in routine diabetes care. We propose a person‐centred outcome set for diabetes, specifically considering psychosocial and behavioural aspects, which was agreed by four international key stakeholder groups. It guides standardised collection of meaningful outcomes at scale, supporting individual and population level healthcare decision making. It will be implemented and tested in Europe as part of the H2O project. [ABSTRACT FROM AUTHOR]
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- 2024
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6. Standardising personalised diabetes care across European health settings: A person‐centred outcome set agreed in a multinational Delphi study
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Porth, Ann‐Kristin, primary, Huberts, Anouk Sjoukje, additional, Rogge, Alizé, additional, Bénard, Angèle Helene Marie, additional, Forbes, Angus, additional, Strootker, Anja, additional, Del Pozo, Carmen Hurtado, additional, Kownatka, Dagmar, additional, Hopkins, David, additional, Nathanson, David, additional, Aanstoot, Henk‐Jan, additional, Soderberg, Jeanette, additional, Eeg‐Olofsson, Katarina, additional, Hamilton, Kathryn, additional, Delbecque, Laure, additional, Ninov, Lyudmil, additional, Due‐Christensen, Mette, additional, Leutner, Michael, additional, Simó, Rafael, additional, Vikstrom‐Greve, Sara, additional, Rössner, Sophia, additional, Flores, Vanesa, additional, Seidler, Yuki, additional, Hasler, Yvonne, additional, Stamm, Tanja, additional, and Kautzky‐Willer, Alexandra, additional
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- 2023
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7. Contextual factors for the successful implementation of self-management interventions for chronic diseases: A qualitative review of reviews.
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Noordman, Janneke, Meurs, Maaike, Poortvliet, Rune, Rusman, Tamara, Orrego-Villagran, Carola, Ballester, Marta, Ninov, Lyudmil, de Guzmán, Ena Niño, Alonso-Coello, Pablo, Groene, Oliver, Suñol, Rosa, Heijmans, Monique, and Wagner, Cordula
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HEART failure treatment ,CHRONIC disease treatment ,OBESITY treatment ,TREATMENT of diabetes ,OBSTRUCTIVE lung disease treatment ,ONLINE information services ,PSYCHOLOGY information storage & retrieval systems ,CINAHL database ,MEDICAL information storage & retrieval systems ,SELF-management (Psychology) ,SYSTEMATIC reviews ,DESCRIPTIVE statistics ,RESEARCH funding ,MEDLINE - Abstract
Objectives: To identify and describe the most relevant contextual factors (CFs) from the literature that influence the successful implementation of self-management interventions (SMIs) for patients living with type 2 diabetes mellitus, obesity, COPD and/or heart failure. Methods: We conducted a qualitative review of reviews. Four databases were searched, 929 reviews were identified, 460 screened and 61 reviews met the inclusion criteria. CFs in this paper are categorized according to the Tailored Implementation for Chronic Diseases framework. Results: A great variety of CFs was identified on several levels, across all four chronic diseases. Most CFs were on the level of the patient, the professional and the interaction level, while less CFs were obtained on the level of the intervention, organization, setting and national level. No differences in main themes of CFs across all four diseases were found. Discussion: For the successful implementation of SMIs, it is crucial to take CFs on several levels into account simultaneously. Person-centered care, by tailoring SMIs to patients' needs and circumstances, may increase the successful uptake, application and implementation of SMIs in real-life practice. The next step will be to identify the most important CFs according to various stakeholders through a group consensus process. [ABSTRACT FROM AUTHOR]
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- 2024
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8. Identifying most important contextual factors for the implementation of self-management interventions:A Delphi study
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Noordman, Janneke, Heijmans, Monique, Poortvliet, Rune, Groene, Oliver, Ballester, Marta, Ninov, Lyudmil, de Guzmán, Ena Niño, Alonso-Coello, Pablo, Orrego, Carola, Suñol, Rosa, and Wagner, Cordula
- Abstract
Objective: To reach consensus amongst stakeholders about the most important contextual factors (CFs) that may influence the successful implementation of (components of) self-management interventions (SMIs) for type 2 diabetes, obesity, COPD and heart failure. Methods: Building on our literature review that identified 31 CFs on different levels we conducted a Delphi with 44 stakeholders to identify which of these CFs, or additional ones, contribute most to successful implementation of SMIs. The Delphi consisted of three rounds in which the CFs were scored, prioritized and discussed. Results: The most important CFs overlapped to a great extent across components of SMIs and diseases. Overall, stakeholders identified ‘HCP's ability to adapt the advice, communication or intervention to patients’ situation and level of knowledge’ as most important CF. Conclusion: CFs need to be taken into account when implementing promising SMIs. According to stakeholders, the most important CFs are patient-, HCP- or interaction related. ‘Tailoring’ was selected as the most crucial aspect for HCPs. Practice implications: Stakeholders can make informed decisions on the adoption of the most suitable SMIs in a given context. These CFs are available through a self-management platform. Suggestions to implement self-management behaviour and to close the research-to-practice gap are made.
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- 2023
9. Most important contextual factors for the implementation of self-management interventions
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Noordman, Janneke, primary, Poortvliet, Rune, additional, Ballester, Marta, additional, Ninov, Lyudmil, additional, de Guzmán, Ena Niño, additional, and Wagner, Cordula, additional
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- 2023
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10. Contextual factors for the successful implementation of self-management interventions for chronic diseases: A qualitative review of reviews
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Noordman, Janneke, primary, Meurs, Maaike, additional, Poortvliet, Rune, additional, Rusman, Tamara, additional, Orrego-Villagran, Carola, additional, Ballester, Marta, additional, Ninov, Lyudmil, additional, de Guzmán, Ena Niño, additional, Alonso-Coello, Pablo, additional, Groene, Oliver, additional, Suñol, Rosa, additional, Heijmans, Monique, additional, and Wagner, Cordula, additional
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- 2023
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11. Standardising personalised diabetes care across European health settings: a person-centred outcome set agreed in a multinational Delphi study
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Porth, Ann-Kristin, Huberts, Anouk S., Rogge, Alizé, Bénard, Angèle H.M., Forbes, Angus, Strootker, Anja, Hurtado Del Pozo, Carmen, Kownatka, Dagmar, Hopkins, David, Nathanson, David, Aanstoot, Henk-Jan, Soderberg, Jeanette, Eeg-Olofsson, Katarina, Hamilton, Kathryn, Delbecque, Laure, Ninov, Lyudmil, Due-Christensen, Mette, Leutner, Michael, Vikstrom-Greve, Sara, Rössner, Sophia, Seidler, Yuki, Hasler, Yvonne, Stamm, Tanja, and Kautzky-Willer, Alexandra
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Health Outcomes Observatory, Health outcomes, Diabetes mellitus, Person-centered care, Patient-reported outcomes, Value-based healthcare - Abstract
This is an updated preprint of our Delphi study to develop a person-centered outcome set for routine diabetes care in Europe: Objective: Standardised patient-reported outcomes (PRO) data can contextualise clinical outcomes enabling precision diabetes monitoring and care. Comprehensive outcome sets can guide this process, but their implementation in routine diabetes care has remained challenging and has not been successful at the international level. We aimed to address this with a person-centred outcome set for Type 1 and 2 diabetes that can be feasibly implemented and sustained in international healthcare settings. Methods: A questionnaire-based Delphi study consisting of three consecutive survey rounds and based on previously identified outcomes was undertaken to reach consensus on the outcome set. Participants included patients (N=94), health professionals (N=65), representatives of industry (N=22) and health authorities (N=3). Subsequent consensus meetings were held to finalise the outcome set. Results: The list of preliminary person-centred outcomes presented in the Delphi study included 64outcomes and was shortlisted via the consensus process to 46 outcomes (27 clinical outcomes and 19 PROs). Two main collection times were recommended: 1) linked to a medical visit (e.g., diabetes-specific well-being, symptoms, and psychological health) and 2) annually (e.g., clinical data, general well-being, and diabetes self-management-related outcomes). Conclusions: PROs are often considered in a non-standardised way in routine diabetes care. We propose a person-centred outcome set for diabetes, specifically considering psychosocial and behavioural aspects, which was agreed by four international key stakeholder groups. It guides standardised patient-important outcome collection at scale to support individual and population level healthcare decision-making. It will be implemented and tested in Europe as part of the H2O project.  
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- 2023
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12. Development of a harmonised core outcome set for more personalised care of patients with diabetes: results of a multi-country Delphi study
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Porth, Ann-Kristin, Huberts, Anouk S., Rogge, Alizé, Bénard, Angèle H.M., Forbes, Angus, Strootker, Anja, Hurtado Del Pozo, Carmen, Kownatka, Dagmar, Hopkins, David, Nathanson, David, Soderberg, Jeanette, Eeg-Olofsson, Katarina, Hamilton, Kathryn, Delbecque, Laure, Ninov, Lyudmil, Due-Christensen, Mette, Leutner, Michael, Vikstrom-Greve, Sara, Rössner, Sophia, Seidler, Yuki, Hasler, Yvonne, Stamm, Tanja, and Kautzky-Willer, Alexandra
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Diabetes, Person-centred care, Patient-reported outcomes, Health outcomes, Outcome set - Abstract
Collecting patient-reported outcomes (PROs) in a standardised way and integrating them with clinical data can empower patients and support diabetes care. We sought to develop a patient-centred core outcome set (COS) to be used in routine diabetes care employing an international multi-stakeholder consensus process focusing on outcome relevance, feasibility and measurement frequency. The three-round Delphi study and subsequent consensus meeting led to a comprehensive outcome set and recommendations for frequency of measurement for each included outcome. The outcome set allows for collecting patient-reported and clinical data in a standardised way to sustainably support diabetes management on the international level and inform research and policy making., {"references":["Walker RJ, Garacci E, Campbell JA, Egede LE. The influence of daily stress on glycemic control and mortality in adults with diabetes. J Behav Med. 2020;43(5):723-31","Hermanns N, Ehrmann D, Shapira A, Kulzer B, Schmitt A, Laffel L. Coordination of glucose monitoring, self-care behaviour and mental health: achieving precision monitoring in diabetes. Diabetologia. 2022","Nano J, Carinci F, Okunade O, Whittaker S, Walbaum M, Barnard-Kelly K, et al. A standard set of person-centred outcomes for diabetes mellitus: results of an international and unified approach. Diabet Med. 2020;37(12):2009-18","Skovlund SE, Troelsen LH, Klim L, Jakobsen PE, Ejskjaer N. The participatory development of a national core set of person-centred diabetes outcome constructs for use in routine diabetes care across healthcare sectors. Res Involv Engagem. 2021;7(1):62","Terwee CB, Zuidgeest M, Vonkeman HE, Cella D, Haverman L, Roorda LD. Common patient-reported outcomes across ICHOM Standard Sets: the potential contribution of PROMIS®. BMC Med Inform Decis Mak. 2021;21(1):259","Svedbo Engström M, Leksell J, Johansson UB, Borg S, Palaszewski B, Franzén S, et al. New Diabetes Questionnaire to add patients' perspectives to diabetes care for adults with type 1 and type 2 diabetes: nationwide cross-sectional study of construct validity assessing associations with generic health-related quality of life and clinical variables. BMJ Open. 2020;10(11):e038966","Stamm T, Bott N, Thwaites R, Mosor E, Andrews M, Borgdorff J, et al. Building a Value-Based Care Infrastructure in Europe: The Health Outcomes Observatory. NEJM Catalyst. 2021;2"]}
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- 2022
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13. Preferences Regarding Self-Management Intervention Outcomes of Dutch Chronically Ill Patients With Limited Health Literacy
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van der Gaag, Marieke, primary, Heijmans, Monique, additional, Ballester, Marta, additional, Orrego, Carola, additional, Niño de Guzmán, Ena, additional, Ninov, Lyudmil, additional, and Rademakers, Jany, additional
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- 2022
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14. Are we measuring what matters to people? A review of PROMs and PREMs used to evaluate self-management interventions
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Marta Ballester, Monique Heijmans, Carola Orrego, Ninov Lyudmil, Jessica Beltran, Ana Isabel González, Marieke Van der Gaag, and Rosa Sunol
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Health (social science) ,Sociology and Political Science ,Health Policy ,female genital diseases and pregnancy complications - Abstract
IntroductionIn past years, the urgency of putting people in the centre of health care research has clearly been established in the public discourse. However, the depth of patient inclusion is still limited. In our COMPAR-EU project (Horizon 2020) we aim to move forward by investigating effectiveness of self-management interventions (SMIs) through the lens of the patients themselves. We do so developing of core outcome sets (COS) for SMIs for adults living with type 2 diabetes, obesity, heart failure or COPD. We now go one step further by reviewing if and how the RCTs on SMIs are reporting on those outcomes, with a focus on which patient-reported experience measures (PREMs) and patient-reported outcome measures (PROMs) are being used.MethodsAfter developing our COS we searched Pubmed, Embase, Cinahl, PsycINFO and Cochrane for RCTs on SMIs for people of 18 years and older living with TYPE 2 DIABETES, COPD, HEART FAILURE and Obesity. Articles and abstracts were screened by two independent reviewers and information extracted for, among other, outcomes (guided by the four COSs) and the PREM and PROM instruments used. We analysed whether all outcomes included in our COS were measured in the literature and the variability and concentration in the use of specific PREMs and PROMs for each outcome and disease.ResultsPREMs and PROMs where both highlighted by patients as being important. For type 2 diabetes we reviewed 697 RCTs on SMIs, which used PROMs for 17 of the 23 outcomes in our COS (some were not susceptible to be measured by PROM/PREM or they were not reported in the literature). For obesity, we reviewed 517 RCTs on SMIs, which used PROMs for the 10 of the 15 outcomes included in our COS.For heart failure we reviewed 288 RCTs on SMIs, which used PROMs for the 19 outcomes in our COS.For COPD we reviewed 252 RCTs on SMIs, which used PROMs for the 10 outcomes in our COS.PREMs were less used in the literature.DiscussionsOur research confirms that the use of PROMs, is extensive, but some outcomes relevant to patients are still not regularly included in effectiveness research, specially those related to experiences of care (PREMs).ConclusionsThere are significant advances in the use of PROMs, the use of PREMs is still more limited in self-management research. Lessons learnedThe way in which research measures effectiveness often is mismatched with patient preferences. Our COMPAR-EU COS for type 2 diabetes, obesity, heart failure and COPD, and literature review can help align research with patient preferences.LimitationsAs any literature review, ours could face limitations in search and extraction and our participatory process due to the small sample of patient and other stakeholders. Several mitigation strategies have been applied. Suggestions for future researchWe suggest expanding the measure of the relevant outcomes to patients in effectiveness research, and the specific PREM and PROM instruments to do so, therefore facilitating comparability.
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- 2022
15. Development of an updated, standardized, patient-centered outcome set for lung cancer
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de Rooij, Belle H, van den Hurk, Corina, Smaardijk, Veerle, Fernandez-Ortega, Paz, Navarro-Martin, Arturo, Barberio, Lidia, Guckenberger, Matthias; https://orcid.org/0000-0002-7146-9071, Schmid, Severin, Walraven, Iris, Vallow, Susan, Kotsi, Christina, Preusser, Matthias; https://orcid.org/0000-0003-3541-2315, Mosor, Erika, Klok, Jente M, Becker, Annemarie, Milani, Alessandra, Ninov, Lyudmil, van de Poll-Franse, Lonneke V, de Rooij, Belle H, van den Hurk, Corina, Smaardijk, Veerle, Fernandez-Ortega, Paz, Navarro-Martin, Arturo, Barberio, Lidia, Guckenberger, Matthias; https://orcid.org/0000-0002-7146-9071, Schmid, Severin, Walraven, Iris, Vallow, Susan, Kotsi, Christina, Preusser, Matthias; https://orcid.org/0000-0003-3541-2315, Mosor, Erika, Klok, Jente M, Becker, Annemarie, Milani, Alessandra, Ninov, Lyudmil, and van de Poll-Franse, Lonneke V
- Abstract
BACKGROUND: In 2016, the International Consortium for Health Outcomes Measurement (ICHOM) defined an international consensus recommendation of the most important outcomes for lung cancer patients. The European Health Outcomes Observatory (H2O) initiative aimed to develop an updated patient-centered core outcome set (COS) for lung cancer, to capture the patient perspective of the impact of lung cancer and (novel) treatments using a combination of patient-reported outcome (PRO) instruments and clinical data as a means to drive value-based health-care. MATERIAL AND METHODS: An international, expert team of patient representatives, multidisciplinary healthcare professionals, academic researchers and pharmaceutical industry representatives (n = 17) reviewed potential outcomes generated through literature review. A broader group of patients/patient representatives (n = 31), healthcare professionals / academic researchers (n = 83), pharmaceutical industry representatives (n = 26), and health authority representatives (n = 6) participated in a Delphi study. In two survey rounds, participants scored the relevance of outcomes from a preliminary list. The threshold for consensus was defined as ≥ 70 % of participants scoring an outcome as 'highly relevant'. In concluding consensus-meeting rounds, the expert multidisciplinary team finalized the COS. RESULTS: The preliminary list defined by the core group consisted of 102 outcomes and was prioritized in the Delphi procedure to 64. The final lung cancer COS includes: 1) case-mix factors (n = 27); 2) PROs related to health-related quality of life (HRQoL) (n = 25); 3) clinical outcomes (n = 12). Patient-reported symptoms beyond domains included in the ICHOM lung cancer set in 2016 were insomnia, nausea, vomiting, anxiety, depression, lack of appetite, gastric problems, constipation, diarrhoea, dysphagia, and haemoptysis. CONCLUSIONS: We will implement the lung cancer COS in Europe within the H2O initiative by collecting the outcomes
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- 2022
16. Development of an Updated, Standardized, Patient-Centered Outcome Set for Lung Cancer
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de Rooij, Belle H., primary, van den Hurk, Corina, additional, Smaardijk, Veerle, additional, Fernandez-Ortega, Paz, additional, Navarro-Martin, Arturo, additional, Barberio, Lidia, additional, Guckenberger, Matthias, additional, Schmid, Severin, additional, Walraven, Iris, additional, Vallow, Susan, additional, Kotsi, Christina, additional, Preusser, Matthias, additional, Mosor, Erika, additional, Klok, Jente M., additional, Becker, Annemarie, additional, Milani, Alessandra, additional, Ninov, Lyudmil, additional, and van de Poll-Franse, Lonneke V., additional
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- 2022
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17. The perspectives of patients and their caregivers on self-management interventions for chronic conditions: a protocol for a mixed-methods overview
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Niño de Guzmán, Ena, primary, Martínez García, Laura, additional, González, Ana I., additional, Heijmans, Monique, additional, Huaringa, Jorge, additional, Immonen, Kaisa, additional, Ninov, Lyudmil, additional, Orrego-Villagrán, Carola, additional, Pérez-Bracchiglione, Javier, additional, Salas-Gama, Karla, additional, Viteri-García, Andrés, additional, and Alonso-Coello, Pablo, additional
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- 2021
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18. The development of a core outcomes set for self‐management interventions for patients living with obesity
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Valli, Claudia, primary, Suñol, Rosa, additional, Orrego, Carola, additional, Niño de Guzmán, Ena, additional, Strammiello, Valentina, additional, Adrion, Nina, additional, Immonen, Kaisa, additional, Ninov, Lyudmil, additional, van der Gaag, Marieke, additional, Ballester, Marta, additional, and Alonso‐Coello, Pablo, additional
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- 2021
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19. The perspectives of patients and their caregivers on self-management interventions for chronic conditions : a protocol for a mixed-methods overview
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Niño de Guzmán, Ena Pery, Martínez García, Laura, González, Ana I., Heijmans, Monique, Huaringa, Jorge, Immonen, Kaisa, Ninov, Lyudmil, Orrego, Carola, Pérez-Bracchiglione, Javier, Salas-Gama, Karla, Viteri-García, A., Alonso-Coello, Pablo, Universitat Autònoma de Barcelona, Niño de Guzmán, Ena Pery, Martínez García, Laura, González, Ana I., Heijmans, Monique, Huaringa, Jorge, Immonen, Kaisa, Ninov, Lyudmil, Orrego, Carola, Pérez-Bracchiglione, Javier, Salas-Gama, Karla, Viteri-García, A., Alonso-Coello, Pablo, and Universitat Autònoma de Barcelona
- Abstract
Introduction : Self-management (SM) interventions are complex interventions and one of the main components of high-quality chronic disease care for which the incorporation of the perspectives of patients and their informal caregivers is crucial. We aim to identify, appraise and synthesise the evidence exploring patients' and caregivers' perspectives on SM interventions. More precisely, we aim to 1) describe how they value the importance of outcomes of SM interventions, and 2) identify the factors that might impact on acceptability and feasibility of SM interventions based on their preferences and experiences. Methods and analysis : We will conduct four mixed-methods overviews as part of COMPAR-EU, a European Union (EU) funded project aimed to identify the most effective and cost-effective SM interventions for chronic obstructive pulmonary disease (COPD), heart failure (HF), obesity, and type 2 diabetes mellitus (T2DM). We will search in MEDLINE, CINAHL, and PsycINFO for systematic reviews of studies addressing patients' preferences on outcomes, or their experiences with SM alongside their disease trajectory or with SM interventions, published in English. Selection of studies and data extraction will be conducted in pairs. We will assess the overlap of studies and methodological quality. We will follow a three-step synthesis process: 1) narrative synthesis for quantitative evidence, 2) thematic synthesis for qualitative evidence, and 3) integration of findings in the interpretation phase. Additionally, we will consult on the relevance of findings with patients and their caregivers. Systematic review registration : PROSPERO
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- 2021
20. Self-management interventions for adults living with Chronic Obstructive Pulmonary Disease (COPD) : The development of a Core Outcome Set for COMPAR-EU project
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Camus-García, Estela, González-González, Ana Isabel, Heijmans, Monique, Niño de Guzmán, Ena, Valli, Claudia, Beltran, Jessica, Pardo-Hernandez, Hector, Ninov, Lyudmil, Strammiello, Valentina, Immonen, Kaisa, Mavridis, Dimitris, Ballester, Marta, Suñol, Rosa, Orrego, Carola, Camus-García, Estela, González-González, Ana Isabel, Heijmans, Monique, Niño de Guzmán, Ena, Valli, Claudia, Beltran, Jessica, Pardo-Hernandez, Hector, Ninov, Lyudmil, Strammiello, Valentina, Immonen, Kaisa, Mavridis, Dimitris, Ballester, Marta, Suñol, Rosa, and Orrego, Carola
- Abstract
A large body of evidence suggests that self-management interventions (SMIs) may improve outcomes in chronic obstructive pulmonary disease (COPD). However, accurate comparisons of the relative effectiveness of SMIs are challenging, partly due to heterogeneity of outcomes across trials and uncertainty about the importance of these outcomes for patients. We aimed to develop a core set of patient-relevant outcomes (COS) for SMIs trials to enhance comparability of interventions and ensure person-centred care. We undertook an innovative approach consisting of four interlinked stages: i) Development of an initial catalogue of outcomes from previous EU-funded projects and/or published studies, ii) Scoping review of reviews on patients and caregivers' perspectives to identify outcomes of interest, iii) Two-round Delphi online survey with patients and patient representatives to rate the importance of outcomes, and iv) Face-to-face consensus workshop with patients, patient representatives, health professionals and researchers to develop the COS. From an initial list of 79 potential outcomes, 16 were included in the COS plus one supplementary outcome relevant to all participants. These were related to patient and caregiver knowledge/competence, self-efficacy, patient activation, self-monitoring, adherence, smoking cessation, COPD symptoms, physical activity, sleep quality, caregiver quality of life, activities of daily living, coping with the disease, participation and decision-making, emergency room visits/admissions and cost effectiveness. The development of the COPD COS for the evaluation of SMIs will increase consistency in the measurement and reporting of outcomes across trials. It will also contribute to more personalized health care and more informed health decisions in clinical practice as patients' preferences regarding COPD outcomes are more systematically included.
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- 2021
21. The Perspectives of Patients with Chronic Diseases and Their Caregivers on Self-Management Interventions : A Scoping Review of Reviews
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Niño de Guzmán, Ena Pery, Martínez García, Laura, Orrego, Carola, Heijmans, Monique, Suñol Sala, Rosa, Fraile-Navarro, David, Pérez-Bracchiglione, Javier, Ninov, Lyudmil, Salas-Gama, Karla, Viteri García, Andrés, Alonso-Coello, Pablo, Universitat Autònoma de Barcelona, Niño de Guzmán, Ena Pery, Martínez García, Laura, Orrego, Carola, Heijmans, Monique, Suñol Sala, Rosa, Fraile-Navarro, David, Pérez-Bracchiglione, Javier, Ninov, Lyudmil, Salas-Gama, Karla, Viteri García, Andrés, Alonso-Coello, Pablo, and Universitat Autònoma de Barcelona
- Abstract
Self-management (SM) interventions are supportive interventions systematically provided by healthcare professionals, peers, or laypersons to increase the skills and confidence of patients in their ability to manage chronic diseases. We had two objectives: (1) to summarise the preferences and experiences of patients and their caregivers (informal caregivers and healthcare professionals) with SM in four chronic diseases and (2) to identify and describe the relevant outcomes for SM interventions from these perspectives. We conducted a mixed-methods scoping review of reviews. We searched three databases until December 2020 for quantitative, qualitative, or mixed-methods reviews exploring patients' and caregivers' preferences or experiences with SM in type 2 diabetes mellitus (T2DM), obesity, chronic obstructive pulmonary disease (COPD), and heart failure (HF). Quantitative data were narratively synthesised, and qualitative data followed a three-step descriptive thematic synthesis. Identified themes were categorised into outcomes or modifiable factors of SM interventions. We included 148 reviews covering T2DM (n = 53 [35.8%]), obesity (n = 20 [13.5%]), COPD (n = 32 [21.6%]), HF (n = 38 [25.7%]), and those with more than one disease (n = 5 [3.4%]). We identified 12 main themes. Eight described the process of SM (disease progression, SM behaviours, social support, interaction with healthcare professionals, access to healthcare, costs for patients, culturally defined roles and perceptions, and health knowledge), and four described their experiences with SM interventions (the perceived benefit of the intervention, individualised care, sense of community with peers, and usability of equipment). Most themes and subthemes were categorised as outcomes of SM interventions. The process of SM shaped the perspectives of patients and their caregivers on SM interventions. Their perspectives were influenced by the perceived benefit of the intervention, the sense of community with peers
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- 2021
22. Self-management interventions for adults living with Chronic Obstructive Pulmonary Disease (COPD): The development of a Core Outcome Set for COMPAR-EU project
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Camus-García, Estela, primary, González-González, Ana Isabel, additional, Heijmans, Monique, additional, Niño de Guzmán, Ena, additional, Valli, Claudia, additional, Beltran, Jessica, additional, Pardo-Hernández, Hector, additional, Ninov, Lyudmil, additional, Strammiello, Valentina, additional, Immonen, Kaisa, additional, Mavridis, Dimitris, additional, Ballester, Marta, additional, Suñol, Rosa, additional, and Orrego, Carola, additional
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- 2021
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23. O.29.1 - Most important contextual factors for the implementation of self-management interventions: Presenter(s): Monique Heijmans, Nivel, Netherlands
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Noordman, Janneke, Poortvliet, Rune, Ballester, Marta, Ninov, Lyudmil, de Guzmán, Ena Niño, and Wagner, Cordula
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- 2023
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24. The development of a core outcomes set for self‐management interventions for patients living with obesity.
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Valli, Claudia, Suñol, Rosa, Orrego, Carola, Niño de Guzmán, Ena, Strammiello, Valentina, Adrion, Nina, Immonen, Kaisa, Ninov, Lyudmil, van der Gaag, Marieke, Ballester, Marta, and Alonso‐Coello, Pablo
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- 2022
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25. The perspectives of patients and their caregivers on self-management interventions for chronic conditions: a protocol for a mixed-methods overview
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Niño de Guzmán, Ena, primary, Martínez García, Laura, additional, González, Ana I., additional, Heijmans, Monique, additional, Huaringa, Jorge, additional, Immonen, Kaisa, additional, Ninov, Lyudmil, additional, Orrego-Villagrán, Carola, additional, Pérez-Bracchiglione, Javier, additional, Salas-Gama, Karla, additional, Viteri-García, Andrés, additional, and Alonso-Coello, Pablo, additional
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- 2020
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26. Improving the quality of care for people with chronic diseases: translating recommendations to practice.
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Maggini, Marina, Caffari, Bruno, Bahc, Dejan, Giusti, Angela, Ninov, Lyudmil, Oprešnik, Denis, Pricci, Flavia, Salvi, Emanuela, Somekh, David, Strammiello, Valentina, Villa, Marika, and Zaletel, Jelka
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- 2022
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27. Additional file 1: Table S1. of Prevalence of Gestational Diabetes Mellitus in urban and rural Tamil Nadu using IADPSG and WHO 1999 criteria (WINGS 6)
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Balaji Bhavadharini, Manni Mahalakshmi, Anjana, Ranjit, Maheswari, Kumar, Uma, Ram, Deepa, Mohan, Unnikrishnan, Ranjit, Ranjani, Harish, Sonak Pastakia, Arivudainambi Kayal, Ninov, Lyudmil, Malanda, Belma, Belton, Anne, and Viswanathan Mohan
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Difference between those who participated and those who refused to participate. (DOC 33 kb)
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- 2016
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28. Glucose tolerance status of Asian Indian women with gestational diabetes at 6weeks to 1year postpartum (WINGS-7)
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Bhavadharini, Balaji, primary, Anjana, Ranjit Mohan, additional, Mahalakshmi, Manni Mohanraj, additional, Maheswari, Kumar, additional, Kayal, Arivudainambi, additional, Unnikrishnan, Ranjit, additional, Ranjani, Harish, additional, Ninov, Lyudmil, additional, Pastakia, Sonak D., additional, Usha, Sriram, additional, Malanda, Belma, additional, Belton, Anne, additional, Uma, Ram, additional, and Mohan, Viswanathan, additional
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- 2016
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29. Physical activity patterns and gestational diabetes outcomes – The wings project
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Anjana, Ranjit Mohan, primary, Sudha, Vasudevan, additional, Lakshmipriya, Nagarajan, additional, Anitha, Chandrasekaran, additional, Unnikrishnan, Ranjit, additional, Bhavadharini, Balaji, additional, Mahalakshmi, Manni Mohanraj, additional, Maheswari, Kumar, additional, Kayal, Arivudainambi, additional, Ram, Uma, additional, Ranjani, Harish, additional, Ninov, Lyudmil, additional, Deepa, Mohan, additional, Pradeepa, Rajendra, additional, Pastakia, Sonak D., additional, Malanda, Belma, additional, Belton, Anne, additional, and Mohan, Viswanathan, additional
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- 2016
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30. Prevalence of Gestational Diabetes Mellitus in urban and rural Tamil Nadu using IADPSG and WHO 1999 criteria (WINGS 6)
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Bhavadharini, Balaji, primary, Mahalakshmi, Manni Mohanraj, additional, Anjana, Ranjit Mohan, additional, Maheswari, Kumar, additional, Uma, Ram, additional, Deepa, Mohan, additional, Unnikrishnan, Ranjit, additional, Ranjani, Harish, additional, Pastakia, Sonak D, additional, Kayal, Arivudainambi, additional, Ninov, Lyudmil, additional, Malanda, Belma, additional, Belton, Anne, additional, and Mohan, Viswanathan, additional
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- 2016
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31. Women in India with Gestational Diabetes Mellitus Strategy (WINGS): Methodology and development of model of care for gestational diabetes mellitus (WINGS 4)
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Mohan, Viswanathan, primary, Kayal, Arivudainambi, additional, Malanda, Belma, additional, Anjana, RanjitMohan, additional, Bhavadharini, Balaji, additional, Mahalakshmi, ManniMohanraj, additional, Maheswari, Kumar, additional, Uma, Ram, additional, Unnikrishnan, Ranjit, additional, Kalaiyarasi, Gunasekaran, additional, Ninov, Lyudmil, additional, and Belton, Anne, additional
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- 2016
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32. Current practices in the diagnosis and management of gestational diabetes mellitus in India (WINGS-5)
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Unnikrishnan, Ranjit, primary, Mahalakshmi, ManniMohanraj, additional, Bhavadharini, Balaji, additional, Maheswari, Kumar, additional, Anjana, RanjitMohan, additional, Jebarani, Saravanan, additional, Ninov, Lyudmil, additional, Kayal, Arivudainamb, additional, Malanda, Belma, additional, Belton, Anne, additional, Uma, Ram, additional, and Mohan, Viswanathan, additional
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- 2016
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33. Women in India with Gestational Diabetes Mellitus Strategy (WINGS): Methodology and development of model of care for gestational diabetes mellitus (WINGS 4).
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Kayal, Arivudainambi, Mohan, Viswanathan, Malanda, Belma, Anjana, Ranjit Mohan, Bhavadharini, Balaji, Mahalakshmi, Manni Mohanraj, Maheswari, Kumar, Uma, Ram, Unnikrishnan, Ranjit, Kalaiyarasi, Gunasekaran, Ninov, Lyudmil, and Belton, Anne
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GESTATIONAL diabetes ,BLOOD sugar monitoring - Abstract
Aim: The Women In India with GDM Strategy (WINGS) project was conducted with the aim of developing a model of care (MOC) suitable for women with gestational diabetes mellitus (GDM) in low- and middle-income countries. Methodology: The WINGS project was carried out in Chennai, Southern India, in two phases. In Phase I, a situational analysis was conducted to understand the practice patterns of health-care professionals and to determine the best screening criteria through a pilot screening study. Results: Phase II involved developing a MOC-based on findings from the situational analysis and evaluating its effectiveness. The model focused on diagnosis, management, and follow-up of women with GDM who were followed prospectively throughout their pregnancy. An educational booklet was provided to all women with GDM, offering guidance on self-management of GDM including sample meal plans and physical activity tips. A pedometer was provided to all women to monitor step count. Medical nutrition therapy (MNT) was the first line of treatment given to women with GDM. Women were advised to undergo fasting blood glucose and postprandial blood glucose testing every fortnight. Insulin was indicated when the target blood glucose levels were not achieved with MNT. Women were evaluated for pregnancy outcomes and postpartum glucose tolerance status. Conclusions: The WINGS MOC offers a comprehensive package at every level of care for women with GDM. If successful, this MOC will be scaled up to other resource-constrained settings with the hope of improving lives of women with GDM. [ABSTRACT FROM AUTHOR]
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- 2016
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34. Current practices in the diagnosis and management of gestational diabetes mellitus in India (WINGS-5).
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Mahalakshmi, Manni Mohanraj, Bhavadharini, Balaji, Maheswari, Kumar, Anjana, Ranjit Mohan, Jebarani, Saravanan, Ninov, Lyudmil, Kayal, Arivudainambi, Malanda, Belma, Belton, Anne, Uma, Ram, Mohan, Viswanathan, and Unnikrishnan, Ranjit
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GESTATIONAL diabetes ,DISEASE management - Abstract
Aim: To obtain information on existing practices in the diagnosis and management of gestational diabetes mellitus (GDM) among physicians/diabetologists/endocrinologists and obstetricians/gynecologists (OB/GYNs) in India. Methods: Details regarding diagnostic criteria used, screening methods, management strategies, and the postpartum follow-up of GDM were obtained from physicians/ diabetologists/endocrinologists and OB/GYNs across 24 states of India using online/in-person surveys using a structured questionnaire. Results: A total of 3841 doctors participated in the survey of whom 68.6% worked in private clinics. Majority of OB/GYNs (84.9%) preferred universal screening for GDM, and screening in the first trimester was performed by 67% of them. Among the OB/GYNs, 600 (36.7%) reported using the nonfasting 2 h criteria for diagnosing GDM whereas 560 (29.4%) of the diabetologists/endocrinologists reported using the same. However, further questioning on the type of blood sample collected and the glucose load used revealed that, in reality, only 208 (12.7%) and 72 (3.8%), respectively, used these criteria properly. The survey also revealed that the International Association of Diabetes and Pregnancy Study Groups criteria was followed properly by 299 (18.3%) of OB/GYNs and 376 (19.7%) of physicians/diabetologists/endocrinologists. Postpartum oral glucose tolerance testing was advised by 56% of diabetologists and 71.6% of OB/GYNs. Conclusion: More than half of the physicians/diabetologists/endocrinologists and OB/GYNs in India do not follow any of the recommended guidelines for the diagnosis of GDM. This emphasizes the need for increased awareness about screening and diagnosis of GDM both among physicians/diabetologists/endocrinologists and OB/GYNs in India. [ABSTRACT FROM AUTHOR]
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- 2016
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35. Are we measuring what matters to people? A review of PROMs and PREMs used to evaluate self-management interventions.
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Ballester, Marta, Heijmans, Monique, Orrego, Carola, Ninov, Lyudmil, Beltran, Jessica, Isabel González, Ana, van der Gaag, Marieke, and Sunol, Rosa
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SELF-management (Psychology) ,HEALTH outcome assessment ,CONFERENCES & conventions ,PATIENTS' attitudes ,EXPERIENCE - Abstract
Introduction In past years, the urgency of putting people in the centre of health care research has clearly been established in the public discourse. However, the depth of patient inclusion is still limited. In our COMPAR-EU project (Horizon 2020) we aim to move forward by investigating effectiveness of self-management interventions (SMIs) through the lens of the patients themselves. We do so developing of core outcome sets (COS) for SMIs for adults living with type 2 diabetes, obesity, heart failure or COPD. We now go one step further by reviewing if and how the RCTs on SMIs are reporting on those outcomes, with a focus on which patient-reported experience measures (PREMs) and patient-reported outcome measures (PROMs) are being used. Methods After developing our COS we searched Pubmed, Embase, Cinahl, PsycINFO and Cochrane for RCTs on SMIs for people of 18 years and older living with TYPE 2 DIABETES, COPD, HEART FAILURE and Obesity. Articles and abstracts were screened by two independent reviewers and information extracted for, among other, outcomes (guided by the four COSs) and the PREM and PROM instruments used. We analysed whether all outcomes included in our COS were measured in the literature and the variability and concentration in the use of specific PREMs and PROMs for each outcome and disease. Results PREMs and PROMs where both highlighted by patients as being important. For type 2 diabetes we reviewed 697 RCTs on SMIs, which used PROMs for 17 of the 23 outcomes in our COS (some were not susceptible to be measured by PROM/PREM or they were not reported in the literature). For obesity, we reviewed 517 RCTs on SMIs, which used PROMs for the 10 of the 15 outcomes included in our COS. For heart failure we reviewed 288 RCTs on SMIs, which used PROMs for the 19 outcomes in our COS. For COPD we reviewed 252 RCTs on SMIs, which used PROMs for the 10 outcomes in our COS. PREMs were less used in the literature. Discussions Our research confirms that the use of PROMs, is extensive, but some outcomes relevant to patients are still not regularly included in effectiveness research, specially those related to experiences of care (PREMs). Conclusions There are significant advances in the use of PROMs, the use of PREMs is still more limited in selfmanagement research. Lessons learned The way in which research measures effectiveness often is mismatched with patient preferences. Our COMPAR-EU COS for type 2 diabetes, obesity, heart failure and COPD, and literature review can help align research with patient preferences. Limitations As any literature review, ours could face limitations in search and extraction and our participatory process due to the small sample of patient and other stakeholders. Several mitigation strategies have been applied. Suggestions for future research We suggest expanding the measure of the relevant outcomes to patients in effectiveness research, and the specific PREM and PROM instruments to do so, therefore facilitating comparability. [ABSTRACT FROM AUTHOR]
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- 2022
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