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  1. AU="Matus Gonzalez, Andrea"
  2. AU="Roy, Antara"
  3. AU="Byeongil Kim"
  4. AU="Bosch, Peter J"
  5. AU="Colin R. Jackson" AU="Colin R. Jackson"
  6. AU="Tan, Bruce K"
  7. AU="Alagappan, Annamalai"
  8. AU="Howard, Lauren L."
  9. AU=Nataraj Gita AU=Nataraj Gita
  10. AU="Zi-Lan Wang"
  11. AU="John F. Whitesides"
  12. AU="Kim, Eun-Kyu"
  13. AU="Shapiro, Anne Nicole"
  14. AU="Joseph R. Francica"
  15. AU="Stringer, Kathleen A."
  16. AU="López-Cobo, Sheila"
  17. AU="Sznitman, Raphael"
  18. AU="Philippe Ciais"
  19. AU="Suprasert, Prapaporn"
  20. AU="Chang, Yinshui"
  21. AU="de Oliveira, Alexandre Adalardo"
  22. AU="D'Angelo Exeni, Maria Eugenia"
  23. AU="Godoy, Carla"

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  1. Artikel: Patients' experiences and perspectives of a mobile phone text messaging intervention to improve dietary behaviours in haemodialysis

    Dawson, Jessica / Tong, Allison / Matus Gonzalez, Andrea / Campbell, Katrina L. / Craig, Jonathan C. / Lee, Vincent W.

    Nutrition & dietetics. 2021 Nov., v. 78, no. 5

    2021  

    Abstract: AIM: Dietary requirements for people on haemodialysis are complex and often poorly adhered to. Mobile phone text messaging offers a simple strategy to enhance current nutritional care. KIDNEYTEXT was a 6‐month pilot randomised controlled trial that ... ...

    Abstract AIM: Dietary requirements for people on haemodialysis are complex and often poorly adhered to. Mobile phone text messaging offers a simple strategy to enhance current nutritional care. KIDNEYTEXT was a 6‐month pilot randomised controlled trial that evaluated the feasibility and impact of mobile phone text messages to alter participants' dietary behaviours. The aim of this study was to elicit the perspectives of people on haemodialysis regarding acceptability of mobile phone text messages targeting dietary behaviours. METHODS: Semi‐structured interviews were conducted with participants in the intervention arm of the KIDNEYTEXT study. Participants were purposively sampled and interviews were conducted in‐person or over the phone. Transcripts were thematically analysed using principles of grounded theory. RESULTS: Interviews were conducted with 25 participants. Four major themes were identified: building awareness (reinforcement of information, simple and comprehensible, guiding choices, accessible information enhancing motivation, gaining skills in management), valuing care (boosting self‐esteem, in‐person care bolstered by reminders), activating change (adjusting lifestyle, gaining control of electrolytes and fluid, striving to improve overall health), waning attention and motivation (lack of personalisation limiting change, maintaining the status quo, reverting back to old habits). CONCLUSIONS: Participants perceived that the KIDNEYTEXT intervention enabled participants to build on their knowledge through the dissemination of simple and actionable content. Participants appreciated frequent reminders of how to improve their diet and felt that this increased contact motivated them to alter some dietary behaviours. Future trials should consider strategies to enhance personalisation to further motivate dietary change.
    Schlagwörter diet ; dietetics ; hemodialysis ; lifestyle ; mobile telephones ; motivation ; people ; self-esteem
    Sprache Englisch
    Erscheinungsverlauf 2021-11
    Umfang p. 516-523.
    Erscheinungsort John Wiley & Sons Australia, Ltd
    Dokumenttyp Artikel
    Anmerkung JOURNAL ARTICLE
    ZDB-ID 2082047-1
    ISSN 1747-0080 ; 1446-6368
    ISSN (online) 1747-0080
    ISSN 1446-6368
    DOI 10.1111/1747-0080.12667
    Datenquelle NAL Katalog (AGRICOLA)

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  2. Artikel ; Online: Nephrologists' perspectives on the impact of COVID-19 on caring for patients undergoing dialysis in Latin America: a qualitative study.

    Matus Gonzalez, Andrea / Lorca, Eduardo / Cabrera, Sebastian / Hernandez, Alejandra / Zúñiga-Sm, Carlos / Sola, Laura / Michea, Luis / Ferreiro Fuentes, Alejandro / Cervantes, Lilia / Madero, Magdalena / Teixeira-Pinto, Armando / Wong, Germaine / Craig, Jonathan / Jaure, Allison

    BMJ open

    2023  Band 13, Heft 5, Seite(n) e062321

    Abstract: Objective: To describe the experiences of nephrologists on caring for patients undergoing in-centre haemodialysis during the COVID-19 pandemic in Latin America.: Design: Twenty-five semistructured interviews were conducted by Zoom videoconference in ... ...

    Abstract Objective: To describe the experiences of nephrologists on caring for patients undergoing in-centre haemodialysis during the COVID-19 pandemic in Latin America.
    Design: Twenty-five semistructured interviews were conducted by Zoom videoconference in English and Spanish languages during 2020 until data saturation. Using thematic analysis, we conducted line-by-line coding to inductively identify themes.
    Setting: 25 centres across nine countries in Latin America.
    Participants: Nephrologists (17 male and 8 female) were purposively sampled to include diverse demographic characteristics and clinical experience.
    Results: We identified five themes: shock and immediate mobilisation for preparedness (overwhelmed and distressed, expanding responsibilities to manage COVID-19 infection and united for workforce resilience); personal vulnerability (being infected with COVID-19 and fear of transmitting COVID-19 to family); infrastructural susceptibility of dialysis units (lacking resources and facilities for quarantine, struggling to prevent cross-contamination, and depletion of personal protective equipment and cleaning supplies); helplessness and moral distress (being forced to ration life-sustaining equipment and care, being concerned about delayed and shortened dialysis sessions, patient hesitancy to attend to dialysis sessions, being grieved by socioeconomic disparities, deterioration of patients with COVID-19, harms of isolation and inability to provide kidney replacement therapy); and fostering innovative delivery of care (expanding use of telehealth, increasing uptake of PD and shifting focus on preventing syndemics).
    Conclusion: Nephrologists felt personally and professionally vulnerable and reported feeling helpless and morally distressed because they doubted their capacity to provide safe care for patients undergoing dialysis. Better availability and mobilisation of resources and capacities to adapt models of care, including telehealth and home-based dialysis, are urgently needed.
    Mesh-Begriff(e) Humans ; Male ; Female ; Renal Dialysis ; Nephrologists ; Latin America/epidemiology ; Pandemics ; COVID-19/therapy ; Qualitative Research ; Patient Care
    Sprache Englisch
    Erscheinungsdatum 2023-05-12
    Erscheinungsland England
    Dokumenttyp Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 2599832-8
    ISSN 2044-6055 ; 2044-6055
    ISSN (online) 2044-6055
    ISSN 2044-6055
    DOI 10.1136/bmjopen-2022-062321
    Datenquelle MEDical Literature Analysis and Retrieval System OnLINE

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  3. Artikel ; Online: Patients' experiences and perspectives of a mobile phone text messaging intervention to improve dietary behaviours in haemodialysis.

    Dawson, Jessica / Tong, Allison / Matus Gonzalez, Andrea / Campbell, Katrina L / Craig, Jonathan C / Lee, Vincent W

    Nutrition & dietetics: the journal of the Dietitians Association of Australia

    2021  Band 78, Heft 5, Seite(n) 516–523

    Abstract: Aim: Dietary requirements for people on haemodialysis are complex and often poorly adhered to. Mobile phone text messaging offers a simple strategy to enhance current nutritional care. KIDNEYTEXT was a 6-month pilot randomised controlled trial that ... ...

    Abstract Aim: Dietary requirements for people on haemodialysis are complex and often poorly adhered to. Mobile phone text messaging offers a simple strategy to enhance current nutritional care. KIDNEYTEXT was a 6-month pilot randomised controlled trial that evaluated the feasibility and impact of mobile phone text messages to alter participants' dietary behaviours. The aim of this study was to elicit the perspectives of people on haemodialysis regarding acceptability of mobile phone text messages targeting dietary behaviours.
    Methods: Semi-structured interviews were conducted with participants in the intervention arm of the KIDNEYTEXT study. Participants were purposively sampled and interviews were conducted in-person or over the phone. Transcripts were thematically analysed using principles of grounded theory.
    Results: Interviews were conducted with 25 participants. Four major themes were identified: building awareness (reinforcement of information, simple and comprehensible, guiding choices, accessible information enhancing motivation, gaining skills in management), valuing care (boosting self-esteem, in-person care bolstered by reminders), activating change (adjusting lifestyle, gaining control of electrolytes and fluid, striving to improve overall health), waning attention and motivation (lack of personalisation limiting change, maintaining the status quo, reverting back to old habits).
    Conclusions: Participants perceived that the KIDNEYTEXT intervention enabled participants to build on their knowledge through the dissemination of simple and actionable content. Participants appreciated frequent reminders of how to improve their diet and felt that this increased contact motivated them to alter some dietary behaviours. Future trials should consider strategies to enhance personalisation to further motivate dietary change.
    Mesh-Begriff(e) Cell Phone ; Diet ; Humans ; Motivation ; Renal Dialysis ; Text Messaging
    Sprache Englisch
    Erscheinungsdatum 2021-04-18
    Erscheinungsland Australia
    Dokumenttyp Journal Article ; Randomized Controlled Trial
    ZDB-ID 2082047-1
    ISSN 1747-0080 ; 1446-6368
    ISSN (online) 1747-0080
    ISSN 1446-6368
    DOI 10.1111/1747-0080.12667
    Datenquelle MEDical Literature Analysis and Retrieval System OnLINE

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  4. Artikel ; Online: Experiences of Latinx Individuals Hospitalized for COVID-19: A Qualitative Study.

    Cervantes, Lilia / Martin, Marlene / Frank, Maria G / Farfan, Julia F / Kearns, Mark / Rubio, Luis A / Tong, Allison / Matus Gonzalez, Andrea / Camacho, Claudia / Collings, Adriana / Mundo, William / Powe, Neil R / Fernandez, Alicia

    JAMA network open

    2021  Band 4, Heft 3, Seite(n) e210684

    Abstract: Importance: Latinx individuals, particularly immigrants, are at higher risk than non-Latinx White individuals of contracting and dying from coronavirus disease 2019 (COVID-19). Little is known about Latinx experiences with COVID-19 infection and ... ...

    Abstract Importance: Latinx individuals, particularly immigrants, are at higher risk than non-Latinx White individuals of contracting and dying from coronavirus disease 2019 (COVID-19). Little is known about Latinx experiences with COVID-19 infection and treatment.
    Objective: To describe the experiences of Latinx individuals who were hospitalized with and survived COVID-19.
    Design, setting, and participants: The qualitative study used semistructured phone interviews of 60 Latinx adults who survived a COVID-19 hospitalization in public hospitals in San Francisco, California, and Denver, Colorado, from March 2020 to July 2020. Transcripts were analyzed using qualitative thematic analysis. Data analysis was conducted from May 2020 to September 2020.
    Main outcomes and measures: Themes and subthemes that reflected patient experiences.
    Results: Sixty people (24 women and 36 men; mean [SD] age, 48 [12] years) participated. All lived in low-income areas, 47 participants (78%) had more than 4 people in the home, and most (44 participants [73%]) were essential workers. Four participants (9%) could work from home, 12 (20%) had paid sick leave, and 21 (35%) lost their job because of COVID-19. We identified 5 themes (and subthemes) with public health and clinical care implications: COVID-19 was a distant and secondary threat (invincibility, misinformation and disbelief, ingrained social norms); COVID-19 was a compounder of disadvantage (fear of unemployment and eviction, lack of safeguards for undocumented immigrants, inability to protect self from COVID-19, and high-density housing); reluctance to seek medical care (worry about health care costs, concerned about ability to access care if uninsured or undocumented, undocumented immigrants fear deportation); health care system interactions (social isolation and change in hospital procedures, appreciation for clinicians and language access, and discharge with insufficient resources or clinical information); and faith and community resiliency (spirituality, Latinx COVID-19 advocates).
    Conclusions and relevance: In interviews, Latinx patients with COVID-19 who survived hospitalization described initial disease misinformation and economic and immigration fears as having driven exposure and delays in presentation. To confront COVID-19 as a compounder of social disadvantage, public health authorities should mitigate COVID-19-related misinformation, immigration fears, and challenges to health care access, as well as create policies that provide work protection and address economic disadvantages.
    Mesh-Begriff(e) Adult ; COVID-19/ethnology ; COVID-19/therapy ; California ; Colorado ; Communication ; Deportation ; Economic Status ; Emigration and Immigration ; Employment ; Fear ; Female ; Financial Stress ; Health Expenditures ; Help-Seeking Behavior ; Hispanic Americans ; Hospitalization ; Humans ; Male ; Middle Aged ; Poverty Areas ; Public Health ; Qualitative Research ; SARS-CoV-2 ; Sick Leave ; Social Class ; Social Norms ; Teleworking ; Undocumented Immigrants
    Sprache Englisch
    Erscheinungsdatum 2021-03-01
    Erscheinungsland United States
    Dokumenttyp Journal Article ; Research Support, N.I.H., Extramural
    ISSN 2574-3805
    ISSN (online) 2574-3805
    DOI 10.1001/jamanetworkopen.2021.0684
    Datenquelle MEDical Literature Analysis and Retrieval System OnLINE

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  5. Artikel ; Online: Outcomes for clinical trials involving adults with chronic kidney disease: a multinational Delphi survey involving patients, caregivers, and health professionals.

    Matus Gonzalez, Andrea / Evangelidis, Nicole / Howell, Martin / Jaure, Allison / Sautenet, Benedicte / Madero, Magdalena / Ashuntantang, Gloria / Anumudu, Samaya / Bernier-Jean, Amelie / Dunn, Louese / Cho, Yeoungjee / Cortes Sanabria, Laura / de Boer, Ian H / Fung, Samuel / Gallego, Daniel / Guha, Chandana / Levey, Andrew S / Levin, Adeera / Lorca, Eduardo /
    Okpechi, Ikechi G / Rossignol, Patrick / Scholes-Robertson, Nicole / Sola, Laura / Teixeira-Pinto, Armando / Usherwood, Tim / Viecelli, Andrea K / Wheeler, David C / Widders, Katherine / Wilkie, Martin / Craig, Jonathan C

    Nephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association

    2024  

    Abstract: Background: Many outcomes of high priority to patients and clinicians are infrequently and inconsistently reported across trials in CKD, which generates research waste and limits evidence-informed decision making. We aimed to generate consensus among ... ...

    Abstract Background: Many outcomes of high priority to patients and clinicians are infrequently and inconsistently reported across trials in CKD, which generates research waste and limits evidence-informed decision making. We aimed to generate consensus among patients/caregivers and health professionals on critically important outcomes for trials in CKD prior to kidney failure and the need for kidney replacement therapy, and to describe the reasons for their choices.
    Methods: Online two-round international Delphi survey. Adult patients with CKD (all stages and diagnoses), caregivers and health professionals, who could read English, Spanish, or French were eligible. Participants rated the importance of outcomes using a Likert scale (7-9 indicating critical importance) and a best-worst scale. The scores for the two groups were assessed to determine absolute and relative importance. Comments were analysed thematically.
    Results: In total, 1 399 participants from 73 countries completed Round 1 of the Delphi survey including 628 (45%) patients/caregivers and 771 (55%) health professionals. In Round 2, 790 participants (56% response rate) from 63 countries completed the survey including 383 (48%) patients/caregivers and 407 (52%) health professionals. The overall top five outcomes were: kidney function, need for dialysis/transplant, life participation, cardiovascular disease, and death. In the final round, patients/caregivers indicated higher scores for most outcomes (17/22 outcomes), and health professionals gave higher priority to mortality, hospitalization, and cardiovascular disease (mean difference > 0.3). Consensus was based upon the two groups yielding median scores of ≥ 7 and mean scores > 7, and the proportions of both groups rating the outcome as 'critically important' being greater than 50%. Four themes reflected the reasons for their priorities: imminent threat of a health catastrophe, signifying diminishing capacities, ability to self-manage and cope, and tangible and direct consequences.
    Conclusion: Across trials in CKD, the outcomes of highest priority to patients, caregivers, and health professionals were kidney function, need for dialysis/transplant, life participation, cardiovascular disease, and death.
    Sprache Englisch
    Erscheinungsdatum 2024-01-17
    Erscheinungsland England
    Dokumenttyp Journal Article
    ZDB-ID 90594-x
    ISSN 1460-2385 ; 0931-0509
    ISSN (online) 1460-2385
    ISSN 0931-0509
    DOI 10.1093/ndt/gfae010
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  6. Artikel ; Online: Perspectives of a proposed patient navigator programme for people with chronic kidney disease in rural communities: Report from national workshops.

    Scholes-Robertson, Nicole / Howell, Martin / Carter, Simon A / Manera, Karine E / Viecelli, Andrea K / Au, Eric / Chong, Chanel / Matus-Gonzalez, Andrea / van Zwieten, Anita / Reidlinger, Donna / Wright, Chad / Owen, Kelli / Craig, Jonathan C / Tong, Allison

    Nephrology (Carlton, Vic.)

    2022  Band 27, Heft 11, Seite(n) 886–896

    Abstract: Aims: People who live in rural areas have reduced access to appropriate and timely healthcare, leading to poorer health outcomes than their metropolitan-based counterparts. The aims of the workshops were to ascertain participants' perspectives on ... ...

    Abstract Aims: People who live in rural areas have reduced access to appropriate and timely healthcare, leading to poorer health outcomes than their metropolitan-based counterparts. The aims of the workshops were to ascertain participants' perspectives on barriers to access to dialysis and transplantation, to identify and prioritize the roles of a rural patient navigator, to discuss the acceptability and feasibility of implementing this role and identify possible outcomes that could be used to measure the success of the programme in a clinical trial.
    Methods: Rural patients (n = 19), their caregivers (n = 5) and health professionals (n = 18) from Australia participated in three workshops. We analysed the data using thematic analysis.
    Results: We identified four themes related to access to dialysis and transplantation: overwhelmed by separate and disconnected health systems, unprepared for emotional toll and isolation, lack of practical support and inability to develop trust and rapport. Four themes related to the role of the patient navigator programme: valuing lived experience, offering cultural expertise, requiring a conduit, and flexibility of the job description. The key roles prioritized by participants were psychological support and networking, provision/consolidation of education, and provision of practical support.
    Conclusion: Rural patients, caregivers and health professionals believed that programmes that include navigators with lived experience of dialysis and kidney transplantation and cultural expertise, especially for Aboriginal Australians, may have the potential to improve patient experiences in accessing healthcare.
    Mesh-Begriff(e) Australia/epidemiology ; Clinical Trials as Topic ; Humans ; Patient Navigation ; Renal Dialysis ; Renal Insufficiency, Chronic/diagnosis ; Renal Insufficiency, Chronic/epidemiology ; Renal Insufficiency, Chronic/therapy ; Rural Population
    Sprache Englisch
    Erscheinungsdatum 2022-09-12
    Erscheinungsland Australia
    Dokumenttyp Journal Article
    ZDB-ID 1303661-0
    ISSN 1440-1797 ; 1320-5358
    ISSN (online) 1440-1797
    ISSN 1320-5358
    DOI 10.1111/nep.14105
    Datenquelle MEDical Literature Analysis and Retrieval System OnLINE

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  7. Artikel ; Online: Patients' attitudes and experiences of transition from paediatric to adult healthcare in rheumatology: a qualitative systematic review.

    Kelly, Ayano / Niddrie, Fiona / Tunnicliffe, David J / Matus Gonzalez, Andrea / Hanson, Camilla / Jiang, Ivy / Major, Gabor / Singh-Grewal, Davinder / Tymms, Kathleen / Tong, Allison

    Rheumatology (Oxford, England)

    2020  Band 59, Heft 12, Seite(n) 3737–3750

    Abstract: Objectives: We aimed to describe patients' attitudes and experiences of transition from paediatric to adult healthcare in rheumatology to inform patient-centred transitional care programmes.: Methods: We searched MEDLINE, EMBASE, PsycINFO and CINAHL ... ...

    Abstract Objectives: We aimed to describe patients' attitudes and experiences of transition from paediatric to adult healthcare in rheumatology to inform patient-centred transitional care programmes.
    Methods: We searched MEDLINE, EMBASE, PsycINFO and CINAHL to August 2019 and used thematic synthesis to analyse the findings.
    Results: From 26 studies involving 451 people with juvenile-onset rheumatic conditions we identified six themes: a sense of belonging (comfort in familiarity, connectedness in shared experiences, reassurance in being with others of a similar age, desire for normality and acceptance); preparedness for sudden changes (confidence through guided introductions to the adult environment, rapport from continuity of care, security in a reliable point of contact, minimizing lifestyle disruptions); abandonment and fear of the unknown (abrupt and forced independence, ill-equipped to hand over medical information, shocked by meeting adults with visible damage and disability, vulnerability in the loss of privacy); anonymous and dismissed in adult care (deprived of human focus, sterile and uninviting environment, disregard of debilitating pain and fatigue); quest for autonomy (controlled and patronized in the paediatric environment, liberated from the authority of others, freedom to communicate openly); and tensions in parental involvement (overshadowed by parental presence, guilt of excluding parents, reluctant withdrawal of parental support).
    Conclusion: Young people feel dismissed, abandoned, ill-prepared and out of control during transition. However, successful transition can be supported by preparing for changes, creating a sense of belonging and negotiating parental involvement and autonomy. Incorporating patient-identified priorities into transitional services may improve satisfaction and outcomes in young people with juvenile-onset rheumatic conditions.
    Mesh-Begriff(e) Humans ; Psychology, Adolescent ; Rheumatology ; Transition to Adult Care
    Sprache Englisch
    Erscheinungsdatum 2020-05-15
    Erscheinungsland England
    Dokumenttyp Journal Article ; Research Support, Non-U.S. Gov't ; Systematic Review
    ZDB-ID 1464822-2
    ISSN 1462-0332 ; 1462-0324
    ISSN (online) 1462-0332
    ISSN 1462-0324
    DOI 10.1093/rheumatology/keaa168
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  8. Artikel: Establishing a core outcome measure for pain in patients with autosomal dominant polycystic kidney disease: a consensus workshop report.

    Natale, Patrizia / Perrone, Ronald D / Tong, Allison / Harris, Tess / Hannan, Elyssa / Ju, Angela / Burnette, Eva / Casteleijn, Niek F / Chapman, Arlene / Eastty, Sarah / Gansevoort, Ron T / Hogan, Marie / Horie, Shigeo / Knebelmann, Bertrand / Lee, Richard / Mustafa, Reem A / Sandford, Richard / Baumgart, Amanda / Craig, Jonathan C /
    Rangan, Gopala K / Sautenet, Bénédicte / Viecelli, Andrea K / Amir, Noa / Evangelidis, Nicole / Guha, Chandana / Logeman, Charlotte / Manera, Karine / Matus Gonzalez, Andrea / Howell, Martin / Strippoli, Giovanni F M / Cho, Yeoungjee

    Clinical kidney journal

    2021  Band 15, Heft 3, Seite(n) 407–416

    Abstract: Background: Pain is the highest prioritized patient-reported outcome in people with autosomal dominant polycystic kidney disease (ADPKD) but remains infrequently and inconsistently measured in clinical trials and poorly managed in clinical settings. A ... ...

    Abstract Background: Pain is the highest prioritized patient-reported outcome in people with autosomal dominant polycystic kidney disease (ADPKD) but remains infrequently and inconsistently measured in clinical trials and poorly managed in clinical settings. A recently completed systematic review of pain in ADPKD identified 26 different outcome measures. None of these measures were considered appropriate as a core outcome measure due to the lack of patient-important dimensions, inadequate content, relatively long duration of completion time and limited evidence to support psychometric robustness.
    Methods: We convened an international Standardized Outcomes in Nephrology-Polycystic Kidney Disease consensus workshop involving 21 patients/caregivers and 40 health professionals (clinicians, nurses, researchers, policy makers and industry representatives) from 18 countries to discuss the identification or development of a core outcome measure for pain.
    Results: Four themes were identified highlighting fundamental issues for the measurement of pain in ADPKD: distressing and disrupting life participation; variability and ambiguity in defining pain; stigma, frustration and adaptation to pain; and ensuring validity and feasibility of pain measures.
    Conclusions: Existing measures were found to be insufficient in capturing pain as a core outcome and there was consensus on the need for a new validated measure that is simple, succinct and addresses the impact of pain on life participation. This measure will facilitate the appropriate prioritization of pain in all trials and guide clinical decision making in people with ADPKD.
    Sprache Englisch
    Erscheinungsdatum 2021-07-06
    Erscheinungsland England
    Dokumenttyp Journal Article
    ZDB-ID 2655800-2
    ISSN 2048-8513 ; 2048-8505
    ISSN (online) 2048-8513
    ISSN 2048-8505
    DOI 10.1093/ckj/sfab110
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  9. Artikel ; Online: Core outcome measures for trials in people with COVID-19

    Tong, Allison / Baumgart, Amanda / Evangelidis, Nicole / Viecelli, Andrea K / Carter, Simon A / Cesar Azevedo, Luciano / Cooper, Tess / Bersten, Andrew / Cervantes, Lila / Chew, Derek P / Crowe, Sally / Douglas, Ivor S / Flemyng, Ella / Elliott, Julian H / Hannan, Elyssa / Horby, Peter / Howell, Martin / Ju, Angela / Lee, Jaehee /
    Lorca, Eduardo / Lynch, Deena / Manera, Karine E / Marshall, John C / Matus Gonzalez, Andrea / McKenzie, Anne / Mehta, Sangeeta / Mer, Mervyn / Conway Morris, Andrew / Needham, Dale M / Nseir, Saad / Povoa, Pedro / Reid, Mark / Sakr, Yasser / Shen, Ning / Smyth, Alan R / Simpson, A John / Snelling, Tom / Strippoli, Giovanni FM / Teixeira-Pinto, Armando / Torres, Antoni / Turner, Tari / Webb, Steve / Williamson, Paula R / Woc-Colburn, Laila / Zhang, Junhua / Craig, Jonathan C

    respiratory failure, multiorgan failure, shortness of breath and recovery

    2020  

    Abstract: ABSTRACT Objective: Respiratory failure, multiorgan failure, shortness of breath, recovery, and mortality have been identified as critically important core outcomes by more than 9300 patients, health professionals and the public from 111 countries in the ...

    Abstract ABSTRACT Objective: Respiratory failure, multiorgan failure, shortness of breath, recovery, and mortality have been identified as critically important core outcomes by more than 9300 patients, health professionals and the public from 111 countries in the global COVID-19-Core Outcome Set initiative. The aim of this project was to establish the core outcome measures for these domains for trials in COVID-19. Design: Three online consensus workshops were convened to establish outcome measures for the four core domains of respiratory failure, multiorgan failure, shortness of breath, and recovery. Setting: International Participants: 130 participants (patients, public and health professionals) from 17 countries attended the three workshops. Main Results: Respiratory failure, assessed by the need for respiratory support based on the World Health Organization Clinical Progression Scale was considered pragmatic, objective, and with broad applicability to various clinical scenarios. The Sequential Organ Failure Assessment was recommended for multiorgan failure because it was routinely used in trials and clinical care, well validated, and feasible. The Modified Medical Research Council measure for shortness of breath, with minor adaptations (recall period of 24 hours to capture daily fluctuations, inclusion of activities to ensure relevance and to capture the extreme severity of shortness of breath in people with COVID-19), was regarded as fit for purpose for this indication. The recovery measure, was developed de novo, and defined as the absence of symptoms, resumption of usual daily activities and return to the previous state of health prior to the illness, using a 5-point Likert scale, and was endorsed. Conclusions: The COVID-19-COS recommended core outcome measures have content validity and are considered the most feasible and acceptable among existing measures. Implementation of the core outcome measures in trials in COVID-19 will ensure consistency and relevance of the evidence to inform decision making and care of patients with COVID-19.

    ACM is supported by a Clinical Research Career Development Fellowship from the Wellcome Trust (WT 2055214/Z/16/Z)
    Schlagwörter covid19
    Erscheinungsdatum 2020-11-14T00:30:35Z
    Verlag Lippincott, Williams & Wilkins
    Erscheinungsland uk
    Dokumenttyp Artikel ; Online
    Datenquelle BASE - Bielefeld Academic Search Engine (Lebenswissenschaftliche Auswahl)

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  10. Artikel ; Online: Core outcomes set for trials in people with COVID-19

    Tong, Allison / Elliott, Julian H / Cesar Azevedo, Luciano / Baumgart, Amanda / Bersten, Andrew / Cervantes, Lilia / Chew, Derek P / Cho, Yeoungjee / Cooper, Tess / Crowe, Sally / Douglas, Ivor S / Evangelidis, Nicole / Flemyng, Ella / Hannan, Elyssa / Horby, Peter / Howell, Martin / Lee, Jaehee / Emma, Liu / Lorca, Eduardo /
    Lynch, Deena / Marshall, John C / Matus Gonzalez, Andrea / McKenzie, Anne / Manera, Karine / McLeod, Charlie / Mehta, Sangeeta / Mer, Mervyn / Conway Morris, Andrew / Nseir, Saad / Povoa, Pedro / Reid, Mark / Sakr, Yasser / Shen, Ning / Smyth, Alan R / Snelling, Tom / Strippoli, Giovanni FM / Teixeira-Pinto, Armando / Torres, Antoni / Turner, Tari / Viecelli, Andrea / Webb, Steve / Williamson, Paula R / Woc-Colburn, Laila / Junhua, Zhang / Craig, Jonathan C

    2020  

    Abstract: Objective: The outcomes reported in trials in COVID-19 are extremely heterogeneous and of uncertain patient relevance, limiting their applicability for clinical decision-making. The aim of this workshop was to establish a core outcomes set for trials in ... ...

    Abstract Objective: The outcomes reported in trials in COVID-19 are extremely heterogeneous and of uncertain patient relevance, limiting their applicability for clinical decision-making. The aim of this workshop was to establish a core outcomes set for trials in people with suspected or confirmed COVID-19. Design: Four international online multi-stakeholder consensus workshops were convened to discuss proposed core outcomes for trials in people with suspected or confirmed COVID-19, informed by a survey involving 9289 respondents from 111 countries. The transcripts were analyzed thematically. The workshop recommendations were used to finalize the core outcomes set Setting: International Participants: Adults aged 18 years and over with confirmed or suspected COVID-19, their family members, members of the general public and health professionals (including clinicians, policy makers, regulators, funders, researchers). Main Results: Six themes were identified. Responding to the critical and acute health crisis reflected the immediate focus on saving lives and preventing life-threatening complications that underpinned the high prioritization of mortality, respiratory failure, and multiorgan failure. Capturing different settings of care highlighted the need to minimize the burden on hospitals and to acknowledge outcomes in community settings. Encompassing the full trajectory and severity of disease was addressing longer-term impacts and the full spectrum of illness (e.g. shortness of breath and recovery). Distinguishing overlap, correlation and collinearity meant recognizing that symptoms such as shortness of breath had distinct value, and minimizing overlap (e.g. lung function and pneumonia were on the continuum toward respiratory failure). Recognizing adverse events refers to the potential harms of new and evolving interventions. Being cognizant of family and psychosocial wellbeing reflected the pervasive impacts of COVID-19. Conclusions: Mortality, respiratory failure, multiorgan failure, shortness of breath, and recovery are critically important outcomes to be consistently reported in COVID-19 trials.

    The project is funded by the Flinders University and the National COVID-19 Clinical Evidence Taskforce, convened by the Australian Living Evidence Consortium, hosted by Cochrane Australia, School of Public Health and Preventive Medicine, Monash University supported by the Australian Government, Victorian Department of Health and Human Services, Ian Potter Foundation, Walter Cottman Endowment Fund (managed by Equity Trustees) and the Lord Mayor's Charitable Foundation). AT is supported by The University of Sydney Robinson Fellowship. ACM is supported by a Clinical Research Career Development Fellowship from the Wellcome Trust (WT 2055214/Z/16/Z)
    Schlagwörter covid19
    Erscheinungsdatum 2020-07-21T13:37:59Z
    Verlag Wolters Kluwer Health
    Erscheinungsland uk
    Dokumenttyp Artikel ; Online
    Datenquelle BASE - Bielefeld Academic Search Engine (Lebenswissenschaftliche Auswahl)

    Volltext online

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