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1. Longitudinal associations between socioeconomic position and overall health of children with chronic kidney disease and their carers

Author

Shingde, Rashmi, Guha, Chandana, van Zwieten, Anita, Kim, Siah, Walker, Amanda, Francis, Anna, Didsbury, Madeleine, Teixeira-Pinto, Armando, Prestidge, Chanel, Lancsar, Emily, Mackie, Fiona, Kwon, Joseph, Howard, Kirsten, Howell, Martin, Jaure, Allison, Hayes, Alison, Raghunandan, Rakhee, Petrou, Stavros, Lah, Suncica, McTaggart, Steven, Craig, Jonathan C., Mallitt, Kylie-Ann, and Wong, Germaine

Published
2024
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2. School attendance and sport participation amongst children with chronic kidney disease: a cross-sectional analysis from the Kids with CKD (KCAD) study

Author

Hudson, Adam C., van Zwieten, Anita, Mallitt, Kylie-Ann, Durkan, Anne, Hahn, Deirdre, Guha, Chandana, Khalid, Rabia, Didsbury, Madeleine, Francis, Anna, McTaggart, Steven, Mackie, Fiona E., Prestidge, Chanel, Teixeira-Pinto, Armando, Lah, Suncica, Howell, Martin, Howard, Kirsten, Nassar, Natasha, Jaure, Allison, Craig, Jonathan C., Wong, Germaine, and Kim, Siah

Published
2024
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3. Establishing a Core Outcome Measure for Peritoneal Dialysis-related Peritonitis: A Standardized Outcomes in Nephrology—Peritoneal Dialysis Consensus Workshop Report

Author

Shen, Jenny I, Cho, Yeoungjee, Manera, Karine E, Brown, Fiona, Dong, Jie, Sahlawi, Muthana Al, Acevedo, Rafael G, Htay, Htay, Ito, Yasuhiko, Kanjanabuch, Talerngsak, Nessim, Sharon J, Ngaruiya, Grace, Piraino, Beth, Szeto, Cheuk-Chun, Teitelbaum, Isaac, Amir, Noa, Craig, Jonathan C, Baumgart, Amanda, Gonzalez, Andrea M, Scholes-Robertson, Nicole, Viecelli, Andrea K, Wilkie, Martin, Tong, Allison, Perl, Jeffrey, Committee, SONG Executive, Craig, Jonathan, Wang, Angela, Hemmelgarn, Brenda, Manns, Braden, Wheeler, David, Gill, John, Tugwell, Peter, Pecoits-Filho, Roberto, Crowe, Sally, Harris, Tess, Van Biesen, Wim, Winkelmayer, Wolfgang, Group, SONG-PD Steering, Johnson, David W, Brown, Edwina, Brunier, Gillian, Manera, Karine, Mehrotra, Rajnish, Dunning, Sue-Ann, Dunning, Tony, Group, SONG-PD Infection Expert Working, Perl, Jeff, Szeto, CC, Forfang, Derek, Gomez, Rafael, Nessim, Sharon, Shen, Jenny, Committee, SONG Coordinating, Martin, Adam, Bernier-Jean, Amelie, Gonzalez, Andrea Matus, Viecelli, Andrea, Ju, Angela, Teixera-Pinto, Armando, Sautenet, Benedicte, Hanson, Camilla, Guha, Chandana, Sumpton, Daniel, Hannan, Elyssa, O’Lone, Emma, Au, Eric, Kerklaan, Jasmijn, Dunn, Louese, Howell, Martin, Nataatmadja, Melissa, Evangelidis, Nicole, Natale, Patrizia, Cazzolli, Rosanna, Anumudu, Samaya, Carter, Simon, Gutman, Talia, and Vastani, Thomas Vastani Rahim

Subjects
Health Services and Systems, Biomedical and Clinical Sciences, Clinical Sciences, Health Sciences, Clinical Research, Clinical Trials and Supportive Activities, Neurodegenerative, core outcome measure, peritoneal dialysis, peritonitis, trial design, SONG-PD Infection Workshop Investigators, Biomedical and clinical sciences, Health sciences
Abstract

IntroductionPeritoneal dialysis (PD)-related peritonitis is one of the leading causes of discontinuation of PD and is considered a critically important outcome for patients on PD. However, there is no universally accepted method of measuring this outcome in clinical trials.MethodsWe convened an online consensus workshop to establish a core outcome measure for PD-related peritonitis in clinical trials.ResultsA total of 53 participants, including 18 patients and caregivers, from 12 countries engaged in breakout discussions in this workshop. Transcripts were analyzed thematically. We identified the following 3 themes: (i) feasibility and applicability across diverse settings, which reflected the difficulty with implementing laboratory-based measures in resource-limited environments; (ii) ensuring validity, which included minimizing false positives and considering the specificity of symptoms; and (iii) being meaningful and tangible to patients, which meant that the measure should be easy to interpret, reflect the impact that symptoms have on patients, and promote transparency by standardizing the reporting of peritonitis among dialysis units.ConclusionA core outcome measure for PD-related peritonitis should include both symptom-based and laboratory-based criteria. Thus, the International Society for Peritoneal Dialysis (ISPD) definition of peritonitis is acceptable. However, there should be consideration of reporting suspected peritonitis in cases where laboratory confirmation is not possible. The measure should include all infections from the time of catheter insertion and capture both the rate of infection and the number of patients who remain peritonitis free. A core outcome measure with these features would increase the impact of clinical trials on the care and decision-making of patients receiving PD.

Published
2022

4. Consumer involvement in the development and dissemination of chronic kidney disease guidelines: a summary of a meaningful and sustainable approach developed by Caring for Australians and New ZealandeRs with kidney Impairment guidelines

Author

Krishnasamy, Rathika, Lee, Vincent, Boag, Jane, Coolican, Helen, Cullen, Vanessa, Fortnum, Debbie, Hassan, Hicham, Jun, Min, Lambert, Kelly, Light, Casey, Nguyen, Thu, Palmer, Suetonia, Scuderi, Carla, See, Emily, Viecelli, Andrea, Walker, Rachael, Scholes-Robertson, Nicole, Guha, Chandana, Gutman, Talia, Howell, Martin, Yip, Adela, Cashmore, Brydee, Roberts, Ieyesha, Lopez-Vargas, Pamela, Wong, Germaine, MacGinley, Robert, Synnot, Anneliese, Craig, Jonathan C., Jauré, Allison, and Tunnicliffe, David J.

Published
2024
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6. Baseline characteristics of participants in the NAVKIDS.sup.2 trial: a patient navigator program in children with chronic kidney disease

Author

Guha, Chandana, Khalid, Rabia, van Zwieten, Anita, Francis, Anna, Hawley, Carmel M., Jauré, Allison, and Teixeira-Pinto, Armando

Subjects
Children -- Diseases, Chronic kidney failure -- Care and treatment -- Patient outcomes, Clinical trials -- Evaluation, Health
Abstract

Background Children with chronic kidney disease (CKD) require multidisciplinary care to meet their complex healthcare needs. Patient navigators are trained non-medical personnel who assist patients and caregivers to overcome barriers to accessing health services through care coordination. This trial aims to determine the effectiveness of a patient navigator program in children with CKD. Methods The NAVKIDS.sup.2 trial is a multi-center, waitlisted, randomized controlled trial of patient navigators in children with CKD conducted at five sites across Australia. Children (0-16 years) with CKD from low socioeconomic status rural or remote areas were randomized to an intervention group or a waitlisted control group (to receive intervention after 6 months). The study primary and secondary endpoints include the self-rated health (SRH) (primary), and utility-based quality of life, progression of kidney dysfunction of the child, SRH, and satisfaction with healthcare of the caregiver at 6 months post-randomization. Results The trial completed recruitment in October 2021 with expected completion of follow-up by October 2022. There were 162 patients enrolled with 80 and 82 patients randomized to the immediate intervention and waitlisted groups, respectively. Fifty-eight (36%) participants were from regional/remote areas, with a median (IQR) age of 9.5 (5.0, 13.0) years, 46% were of European Australian ethnicity, and 65% were male. A total of 109 children (67%) had CKD stages 1-5, 42 (26%) were transplant recipients, and 11 (7%) were receiving dialysis. Conclusion The NAVKIDS.sup.2 trial is designed to evaluate the effectiveness of patient navigation in children with CKD from families experiencing socioeconomic disadvantage. Graphical abstract, Author(s): Chandana Guha [sup.1] [sup.2] , Rabia Khalid [sup.1] [sup.2] , Anita van Zwieten [sup.1] [sup.2] , Anna Francis [sup.3] , Carmel M. Hawley [sup.4] [sup.5] [sup.6] , Allison Jauré [...]

Published
2023
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7. The randomized controlled trial (NAVKIDS2) of a patient navigator program created for children with chronic kidney disease

Author

Wong, Germaine, Guha, Chandana, Mallitt, Kylie-Ann, van Zwieten, Anita, Khalid, Rabia, Francis, Anna, Jaure, Allison, Kim, Siah, Teixeira-Pinto, Armando, Aquino, Martha, Bernier-Jean, Amelie, Johnson, David W., Hahn, Deirdre, Reidlinger, Donna, Ryan, Elizabeth G., Mackie, Fiona, McCarthy, Hugh, Varghese, Julie, Kiriwandeniya, Charani, Howard, Kirsten, Larkins, Nicholas, Macauley, Luke, Walker, Amanda, Howell, Martin, Caldwell, Patrina, Woodleigh, Reginald, Jesudason, Shilpa, Carter, Simon, Kennedy, Sean, Alexander, Stephen, McTaggart, Steve, Craig, Jonathan C., and Hawley, Carmel M.

Published
2024
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8. Improving Diverse and Equitable Involvement of Patients and Caregivers in Research in CKD: Report of a Better Evidence and Translation–Chronic Kidney Disease (BEAT-CKD) Workshop

Author

Cazzolli, Rosanna, Sluiter, Amanda, Bateman, Samantha, Candler, Hayley, Cho, Yeoungjee, Cooper, Tess, Craig, Jonathan C., Dominello, Amanda, Duncanson, Emily, Guha, Chandana, Hawley, Carmel M., Hewawasam, Erandi, Hickey, Laura, Hill, Kathy, Howard, Kirsten, Howell, Martin, Huuskes, Brooke M., Irish, Georgina L., Jesudason, Shilpanjali, Johnson, David W., Kelly, Ayano, Leary, Diana, Manera, Karine, Mazis, Jasmin, McDonald, Stephen, McLennan, Helen, Muthuramalingam, Shyamsundar, Pummeroy, Margaret, Scholes-Robertson, Nicole, Teixeira-Pinto, Armando, Tunnicliffe, David J., van Zwieten, Anita, Viecelli, Andrea K., Wong, Germaine, and Jaure, Allison

Published
2024
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11. Report of the Standardized Outcomes in Nephrology-transplant Consensus Workshop on Establishing a Core Outcome Measure for Infection in Kidney Transplant Recipients

Author

Chan, Samuel, Cazzolli, Rosanna, Jaure, Allison, Johnson, David W., Hawley, Carmel M., Craig, Jonathan C., Sautenet, Benedicte, van Zwieten, Anita, Cao, Christopher, Dobrijevic, Ellen, Wilson, Greg, Scholes-Robertson, Nicole, Carter, Simon, Vastani, Tom, Cho, Yeoungjee, Blumberg, Emily, Brennan, Daniel C., Huuskes, Brooke M., Knoll, Greg, Kotton, Camille, Mamode, Nizam, Muller, Elmi, Phan Ha, Hai An, Tedesco-Silva, Helio, White, David M., Viecelli, Andrea K., Martin, Adam, Tong, Allison, Gonzalez, Andrea Matus, Viecelli, Andrea, Demaine, Andrew, Wang, Angela, Zwieten, Anita van, Demaine, Ann, Preston, Anthony, Sautenet, Benedicte, De Coninck, Brenda, Huuskes, Brooke, Kotton, Camille, Hawley, Carmel, Guha, Chandana, Wanner, Christoph, Gossett, Daniel, Johnson, David, Purdy, Deb, Tarumbwa, Dorcas, Dobrijevic, Ellen, Muller, Elmi, Diekmann, Fritz, Tyson, Gene, Wong, Germaine, Mundy, Gillian, Wilson, Greg, Tesdesco-Silva, Helio, Craig, Jonathan, Manera, Karine, Abbott, Kevin, Lentine, Krista, Marson, Lorna, Frurian, Lucrezia, Hilbrands, Luuk, Naesens, Maarten, Bellini, Maria Irene, Hempstalk, Matty, Isbel, Nicole, Scholes-Robertson, Nicole, Ferrari, Paolo, Rossignol, Patrick, Henman, Paul, Reese, Peter, Oberbauer, Rainer, Pecoits-Filho, Roberto, Cazzolli, Rosanna, Chan, Samuel, Muthuramalingam, Shyamsundar, Carter, Simon, Al-Jabary, Tamara, Harris, Tess, Vastani, Tom, Parapiboon, Watanyu, van Biesen, Wim, and Cho, Yeoungjee

Published
2024
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17. Longitudinal assessment of the health-related quality of life of children and adolescents with chronic kidney disease

Author

Guha, Chandana, van Zwieten, Anita, Khalid, Rabia, Kim, Siah, Walker, Amanda, Francis, Anna, Didsbury, Madeleine, Teixeira-Pinto, Armando, Barton, Belinda, Prestidge, Chanel, Lancsar, Emily, Mackie, Fiona, Kwon, Joseph, Howard, Kirsten, Mallitt, Kylie-Ann, Howell, Martin, Jaure, Allison, Hayes, Alison, Raghunandan, Rakhee, Petrou, Stavros, Lah, Suncica, McTaggart, Steven, Craig, Jonathan C., and Wong, Germaine

Published
2023
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18. Consumer involvement in the development and dissemination of chronic kidney disease guidelines: a summary of a meaningful and sustainable approach developed by Caring for Australians and New ZealandeRs with kidney Impairment guidelines

Author

Scholes-Robertson, Nicole, primary, Guha, Chandana, additional, Gutman, Talia, additional, Howell, Martin, additional, Yip, Adela, additional, Cashmore, Brydee, additional, Roberts, Ieyesha, additional, Lopez-Vargas, Pamela, additional, Wong, Germaine, additional, MacGinley, Robert, additional, Synnot, Anneliese, additional, Craig, Jonathan C., additional, Jauré, Allison, additional, Krishnasamy, Rathika, additional, Tunnicliffe, David J., additional, Lee, Vincent, additional, Boag, Jane, additional, Coolican, Helen, additional, Cullen, Vanessa, additional, Fortnum, Debbie, additional, Hassan, Hicham, additional, Jun, Min, additional, Lambert, Kelly, additional, Light, Casey, additional, Nguyen, Thu, additional, Palmer, Suetonia, additional, Scuderi, Carla, additional, See, Emily, additional, Viecelli, Andrea, additional, and Walker, Rachael, additional

Published
2024
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20. WCN24-1881 Interventions to improve life participation in kidney transplant recipients: a systematic review and meta-analysis

Author

Hughes, Anastasia, primary, Natale, Patrizia, additional, Ju, Angela, additional, Howell, Martin, additional, Wong, Germaine, additional, Teixeira-Pinto, Armando, additional, Guha, Chandana, additional, Sluiter, Amanda, additional, Scholes-Robertson, Nicole, additional, Craig, Jonathan C., additional, Josephson, Michelle A., additional, Strippoli, Giovanni, additional, and Jaure, Allison, additional

Published
2024
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22. NAVKIDS2 trial: a multi-centre, waitlisted randomised controlled trial of a patient navigator intervention in children with chronic kidney disease — statistical analysis plan and update to the protocol

Author

van Zwieten, Anita, Ryan, Elizabeth G., Caldwell, Patrina, Howard, Kirsten, Tong, Allison, Craig, Jonathan C., Alexander, Stephen I., Howell, Martin, Teixeira-Pinto, Armando, Hawley, Carmel M., Jesudason, Shilpanjali, Walker, Amanda, Mackie, Fiona, Kennedy, Sean E., McTaggart, Steven, McCarthy, Hugh J., Carter, Simon A., Kim, Siah, Woodleigh, Reginald, Francis, Anna, Mallard, Alistair R., Bernier-Jean, Amélie, Johnson, David W., Hahn, Deirdre, Reidlinger, Donna, Pascoe, Elaine, Varghese, Julie, Kiriwandeniya, Charani, Vergara, Liza, Larkins, Nicholas, Macauley, Luke, Irving, Michelle, Khalid, Rabia, Guha, Chandana, and Wong, Germaine

Published
2022
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23. Outcomes for clinical trials involving adults with chronic kidney disease: a multinational Delphi survey involving patients, caregivers and health professionals.

Author

Gonzalez, Andrea Matus, Evangelidis, Nicole, Howell, Martin, Jaure, Allison, Sautenet, Benedicte, Madero, Magdalena, Ashuntantang, Gloria, Anumudu, Samaya, Bernier-Jean, Amelie, Dunn, Louese, Cho, Yeoungjee, Sanabria, Laura Cortes, Boer, Ian H de, Fung, Samuel, Gallego, Daniel, Guha, Chandana, Levey, Andrew S, Levin, Adeera, Lorca, Eduardo, and Okpechi, Ikechi G

Subjects
MEDICAL personnel, RENAL replacement therapy, CHRONIC kidney failure, KIDNEY failure, CAREGIVERS
Abstract

Background Many outcomes of high priority to patients and clinicians are infrequently and inconsistently reported across trials in chronic kidney disease (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 This was an 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, 1399 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 >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. [ABSTRACT FROM AUTHOR]

Published
2024
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24. Nephrologists’ perspectives on communication and decision-making regarding technique survival in peritoneal dialysis: an international qualitative interview study

Author

Yudianto, Benedicta, primary, Jaure, Allison, additional, Shen, Jenny, additional, Cho, Yeoungjee, additional, Brown, Edwina, additional, Dong, Jie, additional, Dunning, Tony, additional, Mehrotra, Rajnish, additional, Naicker, Saraladevi, additional, Pecoits-Filho, Roberto, additional, Perl, Jeffrey, additional, Wang, Angela Yee-Moon, additional, Wilkie, Martin, additional, Guha, Chandana, additional, Scholes-Robertson, Nicole, additional, Craig, Jonathan, additional, Johnson, David, additional, and Manera, Karine, additional

Published
2024
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26. Outcomes for clinical trials involving adults with chronic kidney disease: a multinational Delphi survey involving patients, caregivers and health professionals

Author

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

Published
2024
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32. School attendance and sport participation amongst children with chronic kidney disease: a cross-sectional analysis from the Kids with CKD (KCAD) study

Author

Hudson, Adam C., primary, van Zwieten, Anita, additional, Mallitt, Kylie-Ann, additional, Durkan, Anne, additional, Hahn, Deirdre, additional, Guha, Chandana, additional, Khalid, Rabia, additional, Didsbury, Madeleine, additional, Francis, Anna, additional, McTaggart, Steven, additional, Mackie, Fiona E., additional, Prestidge, Chanel, additional, Teixeira-Pinto, Armando, additional, Lah, Suncica, additional, Howell, Martin, additional, Howard, Kirsten, additional, Nassar, Natasha, additional, Jaure, Allison, additional, Craig, Jonathan C., additional, Wong, Germaine, additional, and Kim, Siah, additional

Published
2023
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33. International Survey to Establish Prioritized Outcomes for Trials in People With Coronavirus Disease 2019

Author

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

Published
2020
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36. NAV-KIDS2 trial: protocol for a multi-centre, staggered randomised controlled trial of a patient navigator intervention in children with chronic kidney disease

Author

van Zwieten, Anita, Caldwell, Patrina, Howard, Kirsten, Tong, Allison, Craig, Jonathan C., Alexander, Stephen, Howell, Martin, Armando, Teixeira-Pinto, Hawley, Carmel, Jesudason, Shilpa, Walker, Amanda, Mackie, Fiona, Kennedy, Sean, McTaggart, Steve, McCarthy, Hugh, Carter, Simon, Kim, Siah, Crafter, Sam, Woodleigh, Reginald, Guha, Chandana, and Wong, Germaine

Published
2019
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38. Partnering with patients and caregivers to enrich research and care in kidney disease: values and strategies.

Author

Cazzolli, Rosanna, Sluiter, Amanda, Guha, Chandana, Huuskes, Brooke, Wong, Germaine, Craig, Jonathan C, Jaure, Allison, and Scholes-Robertson, Nicole

Subjects
CHRONICALLY ill, KIDNEY diseases, PATIENT participation, CAREGIVERS, BUSINESS partnerships, CHRONIC kidney failure
Abstract

Patient and caregiver involvement broadens the scope of new knowledge generated from research and can enhance the relevance, quality and impact of research on clinical practice and health outcomes. Incorporating the perspectives of people with lived experience of chronic kidney disease (CKD) affords new insights into the design of interventions, study methodology, data analysis and implementation and has value for patients, healthcare professionals and researchers alike. However, patient involvement in CKD research has been limited and data on which to inform best practice is scarce. A number of frameworks have been developed for involving patients and caregivers in research in CKD and in health research more broadly. These frameworks provide an overall conceptual structure to guide the planning and implementation of research partnerships and describe values that are essential and strategies considered best practice when working with diverse stakeholder groups. This article aims to provide a summary of the strategies most widely used to support multistakeholder partnerships, the different ways patients and caregivers can be involved in research and the methods used to amalgamate diverse and at times conflicting points of view. [ABSTRACT FROM AUTHOR]

Published
2023
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39. Baseline characteristics of participants in the NAVKIDS2 trial: a patient navigator program in children with chronic kidney disease

Author

Guha, Chandana, primary, Khalid, Rabia, additional, van Zwieten, Anita, additional, Francis, Anna, additional, Hawley, Carmel M., additional, Jauré, Allison, additional, Teixeira-Pinto, Armando, additional, Mallard, Alistair R., additional, Bernier-Jean, Amelie, additional, Johnson, David W., additional, Hahn, Deirdre, additional, Reidlinger, Donna, additional, Pascoe, Elaine M., additional, Ryan, Elizabeth G., additional, Mackie, Fiona, additional, McCarthy, Hugh J., additional, Craig, Jonathan C., additional, Varghese, Julie, additional, Kiriwandeniya, Charani, additional, Howard, Kirsten, additional, Larkins, Nicholas G., additional, Macauley, Luke, additional, Walker, Amanda, additional, Howell, Martin, additional, Irving, Michelle, additional, Caldwell, Patrina H. Y., additional, Woodleigh, Reginald, additional, Jesudason, Shilpanjali, additional, Carter, Simon A., additional, Kennedy, Sean E., additional, Alexander, Stephen I., additional, McTaggart, Steven, additional, and Wong, Germaine, additional

Published
2022
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40. Perspectives of Clinicians on Shared Decision Making in Pediatric CKD: A Qualitative Study

Author

Kerklaan, Jasmijn, primary, Hanson, Camilla S., additional, Carter, Simon, additional, Tong, Allison, additional, Sinha, Aditi, additional, Dart, Allison, additional, Eddy, Allison A., additional, Guha, Chandana, additional, Gipson, Debbie S., additional, Bockenhauer, Detlef, additional, Hannan, Elyssa, additional, Yap, Hui-Kim, additional, Groothoff, Jaap, additional, Zappitelli, Michael, additional, Amir, Noa, additional, Alexander, Stephen I., additional, Furth, Susan L., additional, Samuel, Susan, additional, Gutman, Talia, additional, and Craig, Jonathan C., additional

Published
2022
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41. Baseline characteristics of participants in the NAVKIDS2 trial: a patient navigator program in children with chronic kidney disease.

Author

Guha, Chandana, Khalid, Rabia, van Zwieten, Anita, Francis, Anna, Hawley, Carmel M., Jauré, Allison, Teixeira-Pinto, Armando, Mallard, Alistair R., Bernier-Jean, Amelie, Johnson, David W., Hahn, Deirdre, Reidlinger, Donna, Pascoe, Elaine M., Ryan, Elizabeth G., Mackie, Fiona, McCarthy, Hugh J., Craig, Jonathan C., Varghese, Julie, Kiriwandeniya, Charani, and Howard, Kirsten

Subjects
*CHRONIC kidney failure, *RESEARCH, *HEALTH services accessibility, *SOCIAL determinants of health, *PATIENT-centered care, *RANDOMIZED controlled trials, *SOCIOECONOMIC factors, *RESEARCH funding, *DESCRIPTIVE statistics, *QUALITY of life, *STATISTICAL sampling
Abstract

Background: Children with chronic kidney disease (CKD) require multidisciplinary care to meet their complex healthcare needs. Patient navigators are trained non-medical personnel who assist patients and caregivers to overcome barriers to accessing health services through care coordination. This trial aims to determine the effectiveness of a patient navigator program in children with CKD. Methods: The NAVKIDS2 trial is a multi-center, waitlisted, randomized controlled trial of patient navigators in children with CKD conducted at five sites across Australia. Children (0–16 years) with CKD from low socioeconomic status rural or remote areas were randomized to an intervention group or a waitlisted control group (to receive intervention after 6 months). The study primary and secondary endpoints include the self-rated health (SRH) (primary), and utility-based quality of life, progression of kidney dysfunction of the child, SRH, and satisfaction with healthcare of the caregiver at 6 months post-randomization. Results: The trial completed recruitment in October 2021 with expected completion of follow-up by October 2022. There were 162 patients enrolled with 80 and 82 patients randomized to the immediate intervention and waitlisted groups, respectively. Fifty-eight (36%) participants were from regional/remote areas, with a median (IQR) age of 9.5 (5.0, 13.0) years, 46% were of European Australian ethnicity, and 65% were male. A total of 109 children (67%) had CKD stages 1–5, 42 (26%) were transplant recipients, and 11 (7%) were receiving dialysis. Conclusion: The NAVKIDS2 trial is designed to evaluate the effectiveness of patient navigation in children with CKD from families experiencing socioeconomic disadvantage. [ABSTRACT FROM AUTHOR]

Published
2023
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42. Establishing a Core Outcome Measure for Peritoneal Dialysis-related Peritonitis: A Standardized Outcomes in Nephrology—Peritoneal Dialysis Consensus Workshop Report

Author

SONG Executive Committee, Craig, Jonathan, Tong, Allison, Wang, Angela, Hemmelgarn, Brenda, Manns, Braden, Wheeler, David, Gill, John, Tugwell, Peter, Pecoits-Filho, Roberto, Crowe, Sally, Harris, Tess, Van Biesen, Wim, Winkelmayer, Wolfgang, SONG-PD Steering Group, Johnson, David W., Brown, Edwina, Brunier, Gillian, Perl, Jeffrey, Dong, Jie, Manera, Karine, Wilkie, Martin, Mehrotra, Rajnish, Dunning, Sue-Ann, Dunning, Tony, Cho, Yeoungjee, SONG-PD Infection Expert Working Group, Perl, Jeff, Piraino, Beth, Szeto, C.C., Forfang, Derek, Brown, Fiona, Ngaruiya, Grace, Htay, Htay, Teitelbaum, Isaac, Scholes-Robertson, Nicole, Gomez, Rafael, Nessim, Sharon, Kanjanabuch, Talerngsak, Ito, Yasuhiko, Shen, Jenny, Al Sahlawi, Muthana, SONG Coordinating Committee, Martin, Adam, Baumgart, Amanda, Bernier-Jean, Amelie, Matus Gonzalez, Andrea, Viecelli, Andrea, Ju, Angela, Teixera-Pinto, Armando, Sautenet, Benedicte, Hanson, Camilla, Guha, Chandana, Sumpton, Daniel, Hannan, Elyssa, O’Lone, Emma, Au, Eric, Kerklaan, Jasmijn, Dunn, Louese, Howell, Martin, Nataatmadja, Melissa, Evangelidis, Nicole, Amir, Noa, Natale, Patrizia, Cazzolli, Rosanna, Anumudu, Samaya, Carter, Simon, Gutman, Talia, Rahim Vastani, Thomas Vastani, Participants and contributors – Health professionals, Abu-Alfa, Ali, Matus-Gonzalez, Andrea, Aufricht, Christoph, Wallace, Eric, Dasgupta, Indranil, Knight, John, Foo, Marjorie, Lambie, Mark, Schreiber, Martin, Pisoni, Ronald, Apata, Ronke, Antwi, Sampson, Novosad, Shannon, Davies, Simon, Booth, Stephanie, Participants and contributors - Patients/family members/caregivers, Lau, Agnes, Chi, Allen, Heckendorn, Barbara, Allen, Brandie, Dewey, Brenda, Horton, Danielle, Edwards, Dawn, Robinson, Evelyn, Franco, Freddy, Braddock, Gary, Grossman, George, Chestney, Juliana, Laws, Karmen, Clark, Karrin, Penningtown, Keith, Richardson, Lisa, Verdin, Nancy, Jefferson, Nichole, Scholes-Robertson, Nicki, Gedney, Nieltje, Chestney, Norman, Griffiths, Pamela, Kidwell, Sharon, Downs, Shelley, Ball, Terence, Yaeger, Thomas, Elly, Virna, Senior, Wiliam, Shen, Jenny I., Manera, Karine E., Acevedo, Rafael G., Nessim, Sharon J., Szeto, Cheuk-Chun, Craig, Jonathan C., Gonzalez, Andrea M., and Viecelli, Andrea K.

Published
2022
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45. Establishing a core outcome measure for pain in patients with autosomal dominant polycystic kidney disease: a consensus workshop report

Author

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

Published
2021
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46. Kidney transplant recipient perspectives on telehealth during the COVID‐19 pandemic

Author

Huuskes, Brooke M, primary, Scholes‐Robertson, Nicole, additional, Guha, Chandana, additional, Baumgart, Amanda, additional, Wong, Germaine, additional, Kanellis, John, additional, Chadban, Steve, additional, Barraclough, Katherine A., additional, Viecelli, Andrea K, additional, Hawley, Carmel M., additional, Kerr, Peter G., additional, Toby Coates, Patrick, additional, Amir, Noa, additional, and Tong, Allison, additional

Published
2021
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47. Patient and caregiver perspectives on blood pressure in children with chronic kidney disease.

Author

Wu, Justin Guang-Ao, Tong, Allison, Evangelidis, Nicole, Manera, Karine E, Hanson, Camilla S, Baumgart, Amanda, Amir, Noa, Sinha, Aditi, Dart, Allison, Eddy, Allison A, Guha, Chandana, Gipson, Debbie S, Bockenhauer, Detlef, Yap, Hui-Kim, Groothoff, Jaap, Zappitelli, Michael, Alexander, Stephen I, Furth, Susan L, Samuel, Susan, and Carter, Simon A

Subjects
BLOOD pressure, PEDIATRIC nephrology, CHRONIC kidney failure, PATIENTS' attitudes, PATIENT-centered care, CARDIOVASCULAR diseases, KIDNEY failure
Abstract

Background More than 50% of children with chronic kidney disease (CKD) have uncontrolled hypertension, increasing their long-term risk of cardiovascular disease and progression to kidney failure. Children receiving medications or dialysis may also experience acute blood pressure fluctuations accompanied by debilitating symptoms. We aimed to describe the perspectives of children with CKD and their parental caregivers on blood pressure to inform patient-centered care. Methods Secondary thematic analysis was conducted on qualitative data from the Standardized Outcomes in Nephrology—Children and Adolescents initiative, encompassing 16 focus groups, an international Delphi survey and two consensus workshops. We analyzed responses from children with CKD (ages 8–21 years) and caregivers (of children ages 0–21 years) pertaining to blood pressure. Results Overall, 120 patients and 250 caregivers from 22 countries participated. We identified five themes: invisibility and normalization (reassured by apparent normotension, absence of symptoms and expected links with CKD), confused by ambiguity (hypertension indistinguishable from cardiovascular disease, questioning the need for prophylactic intervention, frustrated by inconsistent messages and struggling with technical skills in measurement), enabling monitoring and maintaining health (gaging well-being and preventing vascular complications), debilitating and constraining daily living (provoking anxiety and agitation, helpless and powerless and limiting life activities) and burden of medications (overwhelmed by the quantity of tablets and distress from unexpected side effects). Conclusions For children with CKD and their caregivers, blood pressure was an important heath indicator, but uncertainty around its implications and treatment hampered management. Providing educational resources to track blood pressure and minimizing symptoms and treatment burden may improve outcomes in children with CKD. [ABSTRACT FROM AUTHOR]

Published
2022
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48. Patient and caregiver perspectives on blood pressure in children with chronic kidney disease

Author

Wu, Justin Guang-Ao, primary, Tong, Allison, additional, Evangelidis, Nicole, additional, Manera, Karine E, additional, Hanson, Camilla S, additional, Baumgart, Amanda, additional, Amir, Noa, additional, Sinha, Aditi, additional, Dart, Allison, additional, Eddy, Allison A, additional, Guha, Chandana, additional, Gipson, Debbie S, additional, Bockenhauer, Detlef, additional, Yap, Hui-Kim, additional, Groothoff, Jaap, additional, Zappitelli, Michael, additional, Alexander, Stephen I, additional, Furth, Susan L, additional, Samuel, Susan, additional, Carter, Simon A, additional, Walker, Amanda, additional, Kausman, Joshua, additional, Martinez-Martin, David, additional, Gutman, Talia, additional, and Craig, Jonathan C, additional

Published
2021
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50. Establishing core outcome domains in pediatric kidney disease: report of the Standardized Outcomes in Nephrology—Children and Adolescents (SONG-KIDS) consensus workshops

Author

Guha, Abhjit, Solarin, Adaobi, Sinha, Aditi, Platona, Adriana, Hamilton, Alexander, Woods-Barnard, Alice, Neu, Alicia, Tong, Allison, Dart, Allison, Eddy, Allison, Karathanas, Alyssa, Baumgart, Amanda, Fielding, Amelia, LePage, Amelia, Bernier-Jean, Amelie, Kelly, Amy, Teixeira, Ana, Viecelli, Andrea, Matus, Andrea, Narva, Andrew, Ju, Angela, Wang, Angela Yee-Moon, Sharma, Ankit, Fielding, Anna, Francis, Anna, Meza, Anthony, Fielding, Aria, Teixeira-Pinto, Armando, Bagga, Arvind, Jankauskienė, Augustina, Kelly, Ayano, Gillespie, Barbara, Sautenet, Benedicte, Vogt, Beth, Foster, Bethany, Warady, Bradley, Dixon, Bradley, Manns, Braden, Hemmelgarn, Brenda, Bscardark, Brittney, Romeo, Brooklyn, Hanson, Camilla, Meza, Carlos, Brockett, Carter, Guha, Chandana, Prestidge, Chanel, Logeman, Charlotte, Green, Charmaine, Sanchez-Kazi, Cheryl, Perkins, Christy, Schmitt, Claus Peter, Fielding, Craig, Settee, Craig, Sumpton, Daniel, Meza, Daniel, Karathanas, Darien, Harris, David, Wheeler, David, Hooper, David, Gipson, Debbie, Geary, Denis, Bockenhauer, Detlef, Haffner, Dieter, Mekahli, Djalila, Drozdz, Dorota, Romeo, Ed, Ku, Elaine, Urbina, Elaine, Levtchenko, Elena, Balovlenkov, Elena, Hodson, Elisabeth, Morales, Emily, O'Lone, Emma, Machuca, Emma, Carlton, Emmah, Au, Eric, Olver, Erin, Morales, Estefania, Mirza, Fatima, Mackie, Fiona, Tentori, Francesca, Schaefer, Franz, Higgins, Gail, Deschenes, Georges, Plunkett, Georgia, Yoder, Gerilyn, Wong, Germaine, Morales, Giselle, Germino, Greg, Desmond, Hailey, Perkins, Hayley, Mitchell-Smith, Harrison, Coolican, Helen, Xu, Hong, Yap, Hui-Kim, Anochie, Ifeoma, Ha, Il-Soo, Davis, Ira, Liu, Isaac, Samaniego, Israel, Groothoff, Jaap, Machuca, Jaime, Machuca, James, Kerklaan, Jasmijn, Brockett, Jeff, Norton, Jenna, Shen, Jenny, Goebel, Jens, Rao, Jia, Machuca, Jimmy, Mitchell-Smith, Jo, Watson, Jo, Gill, John, Craig, Jonathan, Flynn, Joseph T., Kausman, Joshua, Samuels, Joshua, Bacchetta, Justine, Yoder, Kaleb, Manera, Karine, Azukaitis, Karolis, Twombley, Katherine, McMichael, Kelly-Ann, Ishikura, Kenji, Romeo, Kennedy, Settee, Kevin, Van, Kim Linh, McMichael, Lachlan, Trinh, Lany, Greenbaum, Larry, Sanchez, Laura, Fielding, Leo, Rees, Lesley, Lippincott, Leslie, Mejia-Saldivar, Levi, Saldivar, Lidia, Guay-Woodford, Lisa, Samaniego, Lizett, Hamiwka, Lorraine, Bell, Lorraine, Dunn, Louese, Barry, Lucinda, Macauley, Luke, Holmes, Luke, Karathanas, Madelynn, Mitchell-Smith, Madison, Walker, Mandy, Benavides, Manuel, Tonelli, Marcello, Ferris, Maria, Vivarelli, Marina, Wolfenden, Mark, Howell, Martin, Christian, Martin, Schreiber, Martin, Moxey-Mims, Marva, Leonard, Mary, Karathanas, Matthew, Pearl, Meghan, Natatmadja, Melissa, Brockett, Melissa, Bonilla-Felix, Melvin, Atkinson, Meredith, Zappitelli, Michael, Baum, Michel, Rheault, Michelle, McCulloch, Mignon, Matsuda-Abedini, Mina, Michael, Mini, Khan, Mohammad, Salih, Mohammad, Carlton, Mycah Ann, Benador, Nadine, Plunkett, Ngairre, Webb, Nick, Scholes-Robertson, Nicki, Larkins, Nicolas, Evangelidis, Nicole, Yoder, Nigel, Meza, Norma, Olver, Paige, Carlton, Paiyton, Brophy, Patrick, Tugwell, Peter, Cochat, Pierre, Mehrotra, Rajnish, Wolfenden, Raphael, Gbadegesin, Rasheed, Benavides, Raymond, Johnson, Rebecca, Morales, Ricardo, Jr., McGee, Richard, Fish, Richard, Gardos, Robert, Pecoits-Filho, Roberto, Vargas, Rocio, Saldivar, Rodolfo, Coppo, Rosanna, Shroff, Rukshana, Raina, Rupesh, Youssouf, Sajeda, Crowe, Sally, Anumudu, Samaya, Chan, Samuel, Baldacchino, Sarah, Wenderfer, Scott, Wolfenden, Sebastian, Carlton, Selah, Sutton, Shanna, Murphy, Shannon, Teo, Sharon, Salih, Sheyma, Sahney, Shobha, Carlton, Silas, Carter, Simon, Pearson, Simone, Khan, Simra, Wilson, Skyla, Sharma, Sonia, Alexander, Stephen, Marks, Stephen, Cornish, Stephen, Goldstein, Stuart, Samuel, Susan, Furth, Susan, Mendley, Susan, Lippincott, Susan, Charles, Symone, Gutman, Talia, Mitchell-Smith, Terri, Harris, Tess, Vetter, Thorsten, Carlton, Tiffany, Carlton, Timothy, Querfeld, Uwe, Saglimbene, Valeria, Charles, Virginia, van Biesen, Wim, Winkelmayer, Wolfgang, Machuca, Yenissey, Cho, Yeoungjee, Salih, Yusuf, Anh, Yo Han, Perkins, Zachary, Salih, Zeynab, Hanson, Camilla S., Craig, Jonathan C., Eddy, Allison A., Gipson, Debbie S., Webb, Nicholas J.A., Alexander, Stephen I., Furth, Susan L., Viecelli, Andrea K., Au, Eric H., Shen, Jenny I., Manera, Karine E., Carter, Simon A., and Walker, Amanda

Published
2020
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