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1. Australian Workshops on Patients’ Perspectives on Hemodialysis and Incremental Start

Author

Hegerty, Katharine, Jaure, Allison, Scholes-Robertson, Nicole, Howard, Kirsten, Ju, Angela, Evangelidis, Nicole, Wolley, Martin, Baumgart, Amanda, Johnson, David W, Hawley, Carmel M, Reidlinger, Donna, Hickey, Laura, Welch, Alyssa, Cho, Yeoungjee, Kerr, Peter G, Roberts, Matthew A, Shen, Jenny I, Craig, Jonathan, Krishnasamy, Rathika, Viecelli, Andrea K, and investigators, INCremental dialysis to improve Health outcomes people starting Hemodialysis

Subjects
Assistive Technology, Kidney Disease, Bioengineering, Renal and urogenital, Good Health and Well Being, hemodialysis, incremental dialysis, patient-centered care, patient perspectives, quality of life, kidney function, INCremental dialysis to improve Health outcomes people starting Hemodialysis (INCH-HD) investigators, residual kidney function
Abstract

IntroductionMost patients with kidney failure commence and continue hemodialysis (HD) thrice weekly. Incremental initiation (defined as HD less than thrice weekly) is increasingly considered to be safe and less burdensome, but little is known about patients' perspectives. We aimed to describe patients' priorities and concerns regarding incremental HD.MethodsPatients currently, previously, or soon to be receiving HD in Australia participated in two 90-minute online workshops to discuss views about HD focusing on incremental start and priorities for trial outcomes. Transcripts were analyzed using thematic analysis. Outcomes were ranked on the basis of the sum of participants' priority scores (i.e., single allocation of 3 points for most important, 2 for second, and 1 for third most important outcome).ResultsAll 26 participants (1 caregiver and 25 patients) preferred an incremental HD approach. The top prioritized outcomes were quality of life (QOL) (56 points), residual kidney function (RKF) (27 points), and mortality (16 points). The following 4 themes underpinning outcome priorities, experience, and safety concerns were identified: (i) unpreparedness and pressure to adapt, (ii) disruption to daily living, (iii) threats to safety, and (iv) hope and future planning.ConclusionPatients with kidney failure preferred an incremental start to HD to minimize disruption to daily living and reduce the negative impacts on their education, ability to work, and family life. QOL was the most critically important outcome, followed by RKF and survival.

Published
2023

2. 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

3. Patient-reported outcome measures for life participation in peritoneal dialysis: a systematic review.

Author

Manera, Karine E, Ju, Angela, Baumgart, Amanda, Hannan, Elyssa, Qiao, Wenjing, Howell, Martin, Nataatmadja, Melissa, Wilkie, Martin, Loud, Fiona, Schwartz, Daniel, Hurst, Helen, Jassal, Sarbjit Vanita, Figueiredo, Ana, Mehrotra, Rajnish, Shen, Jenny, Morton, Rachael L, Moraes, Thyago, Walker, Rachael, Cheung, Catherine, Farragher, Janine F, Craig, Jonathan, Johnson, David W, and Tong, Allison

Subjects
Clinical Research, Kidney Disease, Clinical Trials and Supportive Activities, Adult, Humans, Patient Reported Outcome Measures, Peritoneal Dialysis, Psychometrics, Quality of Life, life participation, outcome measures, peritoneal dialysis, Clinical Sciences, Urology & Nephrology
Abstract

BackgroundPatients receiving peritoneal dialysis (PD) endure an ongoing regimen of daily fluid exchanges and are at risk of potentially life-threatening complications and debilitating symptoms that can limit their ability to participate in life activities. The aim of the study was to identify the characteristics, content and psychometric properties of measures for life participation used in research in PD.MethodsWe searched MEDLINE, Embase, PsychInfo, the Cumulative Index to Nursing and Allied Health Literature (CINAHL) and the Cochrane Central Register of Controlled Trials from inception to May 2020 for all studies that reported life participation in patients on PD. The characteristics, dimensions of life participation and psychometric properties of these measures were extracted and analyzed.ResultsOf the 301 studies included, 17 (6%) were randomized studies and 284 (94%) were nonrandomized studies. Forty-two different measures were used to assess life participation. Of these, 23 (55%) were used in only one study. Fifteen (36%) measures were specifically designed to assess life participation, while 27 (64%) measures assessed broader constructs, such as quality of life, but included questions on life participation. The 36-Item Short Form Health Survey and Kidney Disease Quality of Life Short Form were the most frequently used measures [122 (41%) and 86 (29%) studies, respectively]. Eight (19%) measures had validation data to support their use in patients on PD.ConclusionsThe many measures currently used to assess life participation in patients receiving PD vary in their characteristics, content and validation. Further work to pilot and validate potential measures is required to establish a core patient-reported outcome measure to assess life participation in patients receiving PD.

Published
2021

4. Meaning of empowerment in peritoneal dialysis: focus groups with patients and caregivers.

Author

Baumgart, Amanda, Manera, Karine E, Johnson, David W, Craig, Jonathan C, Shen, Jenny I, Ruiz, Lorena, Wang, Angela Yee-Moon, Yip, Terence, Fung, Samuel KS, Tong, Matthew, Lee, Achilles, Cho, Yeoungjee, Viecelli, Andrea K, Sautenet, Benedicte, Teixeira-Pinto, Armando, Brown, Edwina A, Brunier, Gillian, Dong, Jie, Scholes-Robertson, Nicole, Dunning, Tony, Mehrotra, Rajnish, Naicker, Saraladevi, Pecoits-Filho, Roberto, Perl, Jeffrey, Wilkie, Martin, and Tong, Allison

Subjects
Clinical Research, 7.1 Individual care needs, Management of diseases and conditions, Adolescent, Adult, Aged, Aged, 80 and over, Caregivers, Female, Focus Groups, Humans, Life Style, Male, Middle Aged, Patient Participation, Peritoneal Dialysis, Self-Management, Treatment Outcome, Young Adult, chronic kidney disease, patient empowerment, peritoneal dialysis, quality of life, Clinical Sciences, Urology & Nephrology
Abstract

BackgroundWhile peritoneal dialysis (PD) can offer patients more independence and flexibility compared with in-center hemodialysis, managing the ongoing and technically demanding regimen can impose a burden on patients and caregivers. Patient empowerment can strengthen capacity for self-management and improve treatment outcomes. We aimed to describe patients' and caregivers' perspectives on the meaning and role of patient empowerment in PD.MethodsAdult patients receiving PD (n = 81) and their caregivers (n = 45), purposively sampled from nine dialysis units in Australia, Hong Kong and the USA, participated in 14 focus groups. Transcripts were thematically analyzed.ResultsWe identified six themes: lacking clarity for self-management (limited understanding of rationale behind necessary restrictions, muddled by conflicting information); PD regimen restricting flexibility and freedom (burden in budgeting time, confined to be close to home); strength with supportive relationships (gaining reassurance with practical assistance, comforted by considerate health professionals, supported by family and friends); defying constraints (reclaiming the day, undeterred by treatment, refusing to be defined by illness); regaining lost vitality (enabling physical functioning, restoring energy for life participation); and personal growth through adjustment (building resilience and enabling positive outlook, accepting the dialysis regimen).ConclusionsUnderstanding the rationale behind lifestyle restrictions, practical assistance and family support in managing PD promoted patient empowerment, whereas being constrained in time and capacity for life participation outside the home undermined it. Education, counseling and strategies to minimize the disruption and burden of PD may enhance satisfaction and outcomes in patients requiring PD.

Published
2020

7. Core Outcome Measures for Trials in People With Coronavirus Disease 2019: Respiratory Failure, Multiorgan Failure, Shortness of Breath, and Recovery

Author

Tong, Allison, Baumgart, Amanda, Evangelidis, Nicole, Viecelli, Andrea K., Carter, Simon A., Azevedo, Luciano Cesar, Cooper, Tess, Bersten, Andrew, Cervantes, Lilia, 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., Gonzalez, Andrea Matus, McKenzie, Anne, Mehta, Sangeeta, Mer, Mervyn, Morris, Andrew Conway, Needham, Dale M., Nseir, Saad, Povoa, Pedro, Reid, Mark, Sakr, Yasser, Shen, Ning, Smyth, Alan R., Simpson, A. John, Snelling, Tom, Strippoli, Giovanni F. M., Teixeira-Pinto, Armando, Torres, Antoni, Turner, Tari, Webb, Steve, Williamson, Paula R., Woc-Colburn, Laila, Zhang, Junhua, and Craig, Jonathan C.

Published
2021
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8. Core Outcomes Set for Trials in People With Coronavirus Disease 2019

Author

Tong, Allison, Elliott, Julian H., Azevedo, Luciano Cesar, 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, Liu, Emma, Lorca, Eduardo, Lynch, Deena, Marshall, John C., Matus Gonzalez, Andrea, McKenzie, Anne, Manera, Karine E., 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 K., Webb, Steve, Williamson, Paula R., Woc-Colburn, Laila, Zhang, Junhua, and Craig, Jonathan C.

Published
2020
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9. 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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12. Establishing a Core Outcome Measure for Peritoneal Dialysis-Related Peritonitis: A Standardized Outcomes in Nephrology – Peritoneal Dialysis (SONG-PD) Consensus Workshop Report

Author

Shen, Jenny I., primary, Cho, Yeoungjee, additional, Manera, Karine E., additional, Brown, Fiona, additional, Dong, Jie, additional, Sahlawi, Muthana Al, additional, Acevedo, Rafael Gomez, additional, Htay, Htay, additional, Ito, Yasuhiko, additional, Kanjanabuch, Talerngsak, additional, Nessim, Sharon J., additional, Ngaruiya, Grace, additional, Piraino, Beth, additional, Szeto, Cheuk-Chun, additional, Teitelbaum, Isaac, additional, Amir, Noa, additional, Craig, Jonathan C., additional, Baumgart, Amanda, additional, Gonzalez, Andrea Matus, additional, Scholes-Robertson, Nicole, additional, Viecelli, Andrea K., additional, Wilkie, Martin, additional, Tong, Allison, additional, and Perl, Jeffrey, additional

Published
2022
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13. 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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14. Supplemental Material, sj-docx-1-ptd-10.1177_08968608221096560 - Establishing a core outcome measure for life participation in patients receiving peritoneal dialysis: A Standardised Outcomes in Nephrology–Peritoneal Dialysis consensus workshop report

Author

Cheetham, Melissa S, Wilkie, Martin, Loud, Fiona, Manera, Karine E, Ju, Angela, Figueiredo, Ana, Farragher, Janine, Hurst, Helen, Jassal, Sarbjit V, Mehrotra, Rajnish, Morton, Rachael L, Schwartz, Daniel, Shen, Jenny I, Walker, Rachael, Cho, Yeoungjee, Johnson, David W, Craig, Jonathan C, Anumudu, Samaya, Baumgart, Amanda, Gonzalez, Andrea Matus, Scholes-Robertson, Nicole, Viecelli, Andrea K, and Tong, Allison

Subjects
Medicine
Abstract

Supplemental Material, sj-docx-1-ptd-10.1177_08968608221096560 for Establishing a core outcome measure for life participation in patients receiving peritoneal dialysis: A Standardised Outcomes in Nephrology–Peritoneal Dialysis consensus workshop report by Melissa S Cheetham, Martin Wilkie, Fiona Loud, Karine E Manera, Angela Ju, Ana Figueiredo, Janine Farragher, Helen Hurst, Sarbjit V Jassal, Rajnish Mehrotra, Rachael L Morton, Daniel Schwartz, Jenny I Shen, Rachael Walker, Yeoungjee Cho, David W Johnson, Jonathan C Craig, Samaya Anumudu, Amanda Baumgart, Andrea Matus Gonzalez, Nicole Scholes-Robertson, Andrea K Viecelli, Allison Tong and On behalf of the SONG-PD Life Participation Workshop Investigators in Peritoneal Dialysis International

Published
2022
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15. Perspectives of patients, family members, health professionals and the public on the impact of COVID-19 on mental health

Author

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

Published
2022
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16. A Core Outcome Set for Trials in Glomerular Disease

Author

Carter, Simon A., primary, Lightstone, Liz, additional, Cattran, Dan, additional, Tong, Allison, additional, Bagga, Arvind, additional, Barbour, Sean J., additional, Barratt, Jonathan, additional, Boletis, John, additional, Caster, Dawn J., additional, Coppo, Rosanna, additional, Fervenza, Fernando C., additional, Floege, Jürgen, additional, Hladunewich, Michelle A., additional, Hogan, Jonathan J., additional, Kitching, A. Richard, additional, Lafayette, Richard A., additional, Malvar, Ana, additional, Radhakrishnan, Jai, additional, Rovin, Brad H., additional, Scholes-Robertson, Nicole, additional, Trimarchi, Hernán, additional, Zhang, Hong, additional, Anumudu, Samaya, additional, Cho, Yeoungjee, additional, Gutman, Talia, additional, O’Lone, Emma, additional, Viecelli, Andrea K., additional, Au, Eric, additional, Azukaitis, Karolis, additional, Baumgart, Amanda, additional, Bernier-Jean, Amelie, additional, Dunn, Louese, additional, Howell, Martin, additional, Ju, Angela, additional, Logeman, Charlotte, additional, Nataatmadja, Melissa, additional, Sautenet, Benedicte, additional, Sharma, Ankit, additional, and Craig, Jonathan C., additional

Published
2022
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18. Strong & Deadly Futures, a web-based alcohol and other drug prevention program for Aboriginal and Torres Strait Islander school students: study protocol for a cluster randomised controlled trial (Preprint)

Author

Stapinski, Lexine, primary, Routledge, Kylie, additional, Snijder, Mieke, additional, Doyle, Michael, additional, Champion, Katrina, additional, Chapman, Cath, additional, Ward, James, additional, Baumgart, Amanda, additional, Lee, KS. Kylie, additional, Teesson, Maree, additional, and Newton, Nicola, additional

Published
2021
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19. A Web-Based Alcohol and Other Drug Prevention Program (Strong & Deadly Futures) for Aboriginal and Torres Strait Islander School Students: Protocol for a Cluster Randomized Controlled Trial (Preprint)

Author

Stapinski, Lexine, primary, Routledge, Kylie, additional, Snijder, Mieke, additional, Doyle, Michael, additional, Champion, Katrina, additional, Chapman, Cath, additional, Ward, James, additional, Baumgart, Amanda, additional, Lee, K S Kylie, additional, Teesson, Maree, additional, and Newton, Nicola, additional

Published
2021
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20. Establishing a core outcome measure for life participation in patients receiving peritoneal dialysis: A Standardised Outcomes in Nephrology–Peritoneal Dialysis consensus workshop report.

Author

Cheetham, Melissa S, Wilkie, Martin, Loud, Fiona, Manera, Karine E, Ju, Angela, Figueiredo, Ana, Farragher, Janine, Hurst, Helen, Jassal, Sarbjit V, Mehrotra, Rajnish, Morton, Rachael L, Schwartz, Daniel, Shen, Jenny I, Walker, Rachael, Cho, Yeoungjee, Johnson, David W, Craig, Jonathan C, Anumudu, Samaya, Baumgart, Amanda, and Gonzalez, Andrea Matus

Published
2022
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21. 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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22. 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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23. 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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24. 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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25. Patient-reported outcome measures for pain in autosomal dominant polycystic kidney disease: A systematic review

Author

Natale, Patrizia, primary, Hannan, Elyssa, additional, Sautenet, Bénédicte, additional, Ju, Angela, additional, Perrone, Ronald D., additional, Burnette, Eva, additional, Casteleijn, Niek, additional, Chapman, Arlene, additional, Eastty, Sarah, additional, Gansevoort, Ron, additional, Hogan, Marie, additional, Horie, Shigeo, additional, Knebelmann, Bertrand, additional, Lee, Richard, additional, Mustafa, Reem A., additional, Sandford, Richard, additional, Baumgart, Amanda, additional, Tong, Allison, additional, Strippoli, Giovanni F. M., additional, Craig, Jonathan C., additional, Rangan, Gopala K., additional, and Cho, Yeoungjee, additional

Published
2021
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27. Core Outcome Measures for Trials in People With Coronavirus Disease 2019: Respiratory Failure, Multiorgan Failure, Shortness of Breath, and Recovery

Author

Tong, Allison, Baumgart, Amanda, Evangelidis, Nicole, Viecelli, Andrea K, Carter, Simon A, Azevedo, Luciano Cesar, Cooper, Tess, Bersten, Andrew, Cervantes, Lilia, 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, Gonzalez, Andrea Matus, McKenzie, Anne, Mehta, Sangeeta, Mer, Mervyn, Morris, Andrew Conway, 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, COVID-19-Core Outcomes Set Investigators, Teixeira-Pinto, Armando [0000-0002-9389-2516], and Apollo - University of Cambridge Repository

Subjects
Clinical Trials as Topic, Dyspnea, Research Design, Multiple Organ Failure, Outcome Assessment, Health Care, Practice Guidelines as Topic, COVID-19, Humans, Reproducibility of Results, Recovery of Function, Respiratory Insufficiency
Abstract

OBJECTIVES: Respiratory failure, multiple organ 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 coronavirus disease 2019 core outcome set initiative. The aim of this project was to establish the core outcome measures for these domains for trials in coronavirus disease 2019. DESIGN: Three online consensus workshops were convened to establish outcome measures for the four core domains of respiratory failure, multiple organ failure, shortness of breath, and recovery. SETTING: International. PATIENTS: About 130 participants (patients, public, and health professionals) from 17 countries attended the three workshops. INTERVENTIONS: None. MEASUREMENTS AND 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 multiple organ 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 hr to capture daily fluctuations and inclusion of activities to ensure relevance and to capture the extreme severity of shortness of breath in people with coronavirus disease 2019), 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 coronavirus disease 2019 core outcome set 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 coronavirus disease 2019 will ensure consistency and relevance of the evidence to inform decision-making and care of patients with coronavirus disease 2019.

Published
2020
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28. 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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29. Establishing a Core Outcome Set for Autosomal Dominant Polycystic Kidney Disease: Report of the Standardized Outcomes in Nephrology–Polycystic Kidney Disease (SONG-PKD) Consensus Workshop

Author

Cho, Yeoungjee, primary, Tong, Allison, additional, Craig, Jonathan C., additional, Mustafa, Reem A., additional, Chapman, Arlene, additional, Perrone, Ronald D., additional, Ahn, Curie, additional, Fowler, Kevin, additional, Torres, Vicente, additional, Gansevoort, Ron T., additional, Ong, Albert C.M., additional, Coolican, Helen, additional, Tze-Wah Kao, Juliana, additional, Harris, Tess, additional, Gutman, Talia, additional, Shen, Jenny I., additional, Viecelli, Andrea K., additional, Johnson, David W., additional, Au, Eric, additional, El-Damanawi, Ragada, additional, Logeman, Charlotte, additional, Ju, Angela, additional, Manera, Karine E., additional, Chonchol, Michel, additional, Odland, Dwight, additional, Baron, David, additional, Pei, York, additional, Sautenet, Benedicte, additional, Rastogi, Anjay, additional, Sharma, Ankit, additional, Rangan, Gopala, additional, Levin, Adeera, additional, Yu, Alan, additional, Ong, Albert, additional, Thompson, Aliza, additional, Baumgart, Amanda, additional, Bernier-Jean, Amelie, additional, Kelly, Amy, additional, Viecelli, Andrea, additional, Mallett, Andrew, additional, Wang, Angela, additional, Rastog, Anjay, additional, Nadeau-Fredette, Annie-Claire, additional, Teixeira-Pinto, Armando, additional, Kelly, Ayano, additional, Gillespie, Barbara, additional, Canaud, Bernard, additional, Manns, Braden, additional, Hemmelgarn, Brenda, additional, Hanson, Camilla, additional, Hawley, Carmel, additional, Pollock, Carol, additional, Chao, Chia-Ter, additional, Rutherford, Claudia, additional, Sumpton, Daniel, additional, Harris, David, additional, Johnson, David, additional, Wheeler, David, additional, Mekahli, Djalila, additional, O’Donoghue, Donal, additional, Peters, Dorien, additional, Oberdhan, Dorothee, additional, Balovlenkov, Elena, additional, O'Lone, Emma, additional, Tentori, Francesca, additional, Czerwiec, Frank, additional, Oskoui, Frederic Rahbari, additional, Rangan, Gopi, additional, Germino, Gregory, additional, Park, Hayne, additional, Htay, Htay, additional, Ryu, Hyunjin, additional, Norton, Jenna, additional, Shen, Jenny, additional, Gill, John, additional, Kao, Juliana, additional, Eckardt, Kai-Uwe, additional, Manera, Karine, additional, Van, Kim Linh, additional, Guay-Woodford, Lisa, additional, Krishnan, Mahesh, additional, Hogan, Marie, additional, Howell, Martin, additional, Park, Meyeon, additional, Mrug, Michal, additional, Ta, Michelle, additional, Evangelidis, Nicole, additional, Harris, Peter, additional, Tugwell, Peter, additional, Garimella, Pranav, additional, Krishnasamy, Rathika, additional, Mustafa, Reem, additional, McGee, Richard, additional, Pecoits-Filho, Roberto, additional, Gansevoort, Ron, additional, Perrone, Ronald, additional, Torra, Roser, additional, Crowe, Sally, additional, Anumudu, Samaya, additional, Chan, Samuel, additional, Bernays, Sarah, additional, Horie, Shigeo, additional, Carter, Simon, additional, Palmer, Suetonia, additional, Mendley, Susan, additional, Watnick, Terry, additional, Hiemstra, Thomas, additional, Weimbs, Thomas, additional, Jha, Vivek, additional, van Biesen, Wim, additional, Winkelmayer, Wolfgang, additional, Cho, Yeoungjee, additional, Oh, Yun Kyu, additional, Clark, David, additional, McGinty-Poteet, Debra, additional, King, Elizabeth, additional, Vickers, Frances, additional, Odland, Jean, additional, Lee, Lynore, additional, Vickers, Marvin, additional, Johnston-Clark, Mary, additional, Dorsey, Robin, additional, and Baron, Zachary, additional

Published
2021
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30. Supplemental Material, PTD880101_supp_mat - 'Can I go to Glasgow?' Learnings from patient involvement at the 17th Congress of the International Society for Peritoneal Dialysis (ISPD)

Author

Gutman, Talia, Manera, Karine E, Baumgart, Amanda, Johnson, David W, Wilkie, Martin, Boudville, Neil, Craig, Jonathan C, Dong, Jie, Jesudason, Shilpa, Rajnish Mehrotra, Neu, Alicia, Shen, Jenny I, Biesen, Wim Van, Blake, Peter G, Brunier, Gillian, Yeoungjee Cho, Jefferson, Nichole, Lenga, Ilan, Neelem Mann, Mendelson, Asher A, Perl, Jeffrey, Sanabria, Rafael Mauricio, Scholes-Roberston, Nicole, Schwartz, Daniel, Teitelbaum, Isaac, and Tong, Allison

Subjects
Medicine
Abstract

Supplemental Material, PTD880101_supp_mat for “Can I go to Glasgow?” Learnings from patient involvement at the 17th Congress of the International Society for Peritoneal Dialysis (ISPD) by Talia Gutman, Karine E Manera, Amanda Baumgart, David W Johnson, Martin Wilkie, Neil Boudville, Jonathan C Craig, Jie Dong, Shilpa Jesudason, Rajnish Mehrotra, Alicia Neu, Jenny I Shen, Wim Van Biesen, Peter G Blake, Gillian Brunier, Yeoungjee Cho, Nichole Jefferson, Ilan Lenga, Neelem Mann, Asher A Mendelson, Jeffrey Perl, Rafael Mauricio Sanabria, Nicole Scholes-Roberston, Daniel Schwartz, Isaac Teitelbaum and Allison Tong in Peritoneal Dialysis International

Published
2020
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31. Patient-reported outcome measures for life participation in peritoneal dialysis: a systematic review

Author

Manera, Karine E, primary, Ju, Angela, additional, Baumgart, Amanda, additional, Hannan, Elyssa, additional, Qiao, Wenjing, additional, Howell, Martin, additional, Nataatmadja, Melissa, additional, Wilkie, Martin, additional, Loud, Fiona, additional, Schwartz, Daniel, additional, Hurst, Helen, additional, Jassal, Sarbjit Vanita, additional, Figueiredo, Ana, additional, Mehrotra, Rajnish, additional, Shen, Jenny, additional, Morton, Rachael L, additional, Moraes, Thyago, additional, Walker, Rachael, additional, Cheung, Catherine, additional, Farragher, Janine F, additional, Craig, Jonathan, additional, Johnson, David W, additional, and Tong, Allison, additional

Published
2020
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32. Patient and caregiver perspectives on burnout in peritoneal dialysis

Author

Oveyssi, Justin, primary, Manera, Karine E, additional, Baumgart, Amanda, additional, Cho, Yeoungjee, additional, Forfang, Derek, additional, Saxena, Anjali, additional, Craig, Jonathan C, additional, Fung, Samuel KS, additional, Harris, David, additional, Johnson, David W, additional, Kerr, Peter G, additional, Lee, Achilles, additional, Ruiz, Lorena, additional, Tong, Matthew, additional, Wang, Angela Yee-Moon, additional, Yip, Terence, additional, Tong, Allison, additional, and Shen, Jenny I, additional

Published
2020
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33. Patient needs and priorities for patient navigator programmes in chronic kidney disease: a workshop report

Author

Guha, Chandana, primary, Lopez-Vargas, P, additional, Ju, Angela, additional, Gutman, Talia, additional, Scholes-Robertson, Nicole Jane, additional, Baumgart, Amanda, additional, Wong, Germaine, additional, Craig, Jonathan, additional, Usherwood, Tim, additional, Reid, Sharon, additional, Cullen, Vanessa, additional, Howell, Martin, additional, Khalid, Rabia, additional, Teixeira-Pinto, Armando, additional, Wyburn, Kate, additional, Sen, Shaundeep, additional, Smolonogov, Tanya, additional, Lee, Vincent W, additional, Rangan, Gopala K, additional, Matus Gonzales, Andrea, additional, and Tong, Allison, additional

Published
2020
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34. Establishing a core outcome measure for pain in patients with autosomal dominant polycystic kidney disease: a consensus workshop report.

Author

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, and Rangan, Gopala K

Subjects
POLYCYSTIC kidney disease, PAIN measurement
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. [ABSTRACT FROM AUTHOR]

Published
2022
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35. A Web-Based Alcohol and Other Drug Prevention Program (Strong & Deadly Futures) for Aboriginal and Torres Strait Islander School Students: Protocol for a Cluster Randomized Controlled Trial.

Author

Stapinski, Lexine, Routledge, Kylie, Snijder, Mieke, Doyle, Michael, Champion, Katrina, Chapman, Cath, Ward, James, Baumgart, Amanda, Kylie Lee, K. S., Teesson, Maree, and Newton, Nicola

Subjects
SCHOOL children, RANDOMIZED controlled trials, CULTURAL pluralism, HEALTH outcome assessment, ALCOHOL drinking
Abstract

Background: There are no available school-based alcohol and drug prevention programs with evidence of effectiveness among Aboriginal and Torres Strait Islander youth. To address this, we codeveloped the Strong & Deadly Futures well-being and alcohol and drug prevention program in partnership with an Indigenous creative design agency and 4 Australian schools. Objective: This paper presents the protocol to evaluate the effectiveness of Strong & Deadly Futures in reducing alcohol and other drug use and improving well-being among Aboriginal and Torres Strait Islander youth. Methods: The target sample will be 960 year 7 and 8 students from 24 secondary schools in Australia, of which approximately 40% (384/960) will identify as Aboriginal or Torres Strait Islander. The study design is a 2-group, parallel cluster randomized controlled trial with allocation concealment. Recruited schools will be block randomized (ratio 1:1), stratified by geographical remoteness, by an independent statistician. Schools will be randomized to receive Strong & Deadly Futures, a web-based alcohol and drug prevention and social and emotional well-being program that delivers curriculum-aligned content over 6 lessons via an illustrated story, or health education as usual (control). Control schools will be supported to implement Strong & Deadly Futures following trial completion. Surveys will be administered at baseline, 6 weeks, 12 months, and 24 months (primary end point) post baseline. Primary outcomes are alcohol use (adapted from the National Drug Strategy Household Survey), tobacco use (Standard High School Youth Risk Behavior Survey), and psychological distress (Kessler-5 Psychological Distress Scale). Secondary outcomes are alcohol and drug knowledge and intentions, alcohol-related harms, binge drinking, cannabis use, well-being, empowerment, appreciation of cultural diversity, and truancy. Results: The trial was funded by the National Health and Medical Research Council in January 2019, approved by the Human Research Ethics Committee of the University of Sydney (2020/039, April 2020), the Aboriginal Health and Medical Research Council of New South Wales (1620/19, February 2020), the Western Australian Aboriginal Health Ethics Committee (998, October 2021), and the ethics committees of each participating school, including the New South Wales Department of Education (2020170, June 2020), Catholic Education Western Australia (RP2020/39, November 2020), and the Queensland Department of Education (550/27/2390, August 2021). Projected dates of data collection are 2022-2024, and we expect to publish the results in 2025. A total of 24 schools have been recruited as of submission of the manuscript. Conclusions: This will be the first cluster randomized controlled trial of a culturally inclusive, school-based alcohol and drug prevention program for Aboriginal and Torres Strait Islander youth; therefore, it has significant potential to address alcohol and other drug harms among Aboriginal and Torres Strait Islander youth. [ABSTRACT FROM AUTHOR]

Published
2022
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36. Patients’ and caregivers’ perspectives on access to kidney replacement therapy in rural communities: systematic review of qualitative studies

Author

Scholes-Robertson, Nicole Jane, primary, Howell, Martin, additional, Gutman, Talia, additional, Baumgart, Amanda, additional, SInka, Victoria, additional, Tunnicliffe, David J, additional, May, Stephen, additional, Chalmers, Rachel, additional, Craig, Jonathan, additional, and Tong, Allison, additional

Published
2020
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37. Establishing core outcome domains in pediatric kidney disease: report of the Standardized Outcomes in Nephrology—Children and Adolescents (SONG-KIDS) consensus workshops

Author

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

Published
2020
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38. Patient- and parent proxy-reported outcome measures for life participation in children with chronic kidney disease: a systematic review

Author

Kerklaan, Jasmijn, primary, Hannan, Elyssa, additional, Baumgart, Amanda, additional, Manera, Karine E, additional, Ju, Angela, additional, McCulloch, Mignon, additional, Admani, Bashir, additional, Dominello, Amanda, additional, Esezobor, Christopher, additional, Foster, Bethany, additional, Hamilton, Alexander, additional, Jankauskiene, Augustina, additional, Johnson, Rebecca J, additional, Liu, Isaac, additional, Marks, Stephen D, additional, Neu, Alicia, additional, Schaefer, Franz, additional, Sutton, Shanna, additional, Wolfenden, Sebastian, additional, Craig, Jonathan C, additional, Groothoff, Jaap, additional, Howell, Martin, additional, and Tong, Allison, additional

Published
2020
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39. Suspension and resumption of kidney transplant programmes during the COVID‐19 pandemic: perspectives from patients, caregivers and potential living donors – a qualitative study

Author

Guha, Chandana, primary, Tong, Allison, additional, Baumgart, Amanda, additional, Scholes‐Robertson, Nicole, additional, Isbel, Nicole, additional, Kanellis, John, additional, Campbell, Scott, additional, Coates, Toby, additional, and Chadban, Steven, additional

Published
2020
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40. Patient and Caregiver Perspectives on Terms Used to Describe Kidney Health

Author

Tong, Allison, primary, Levey, Andrew S., additional, Eckardt, Kai-Uwe, additional, Anumudu, Samaya, additional, Arce, Cristina M., additional, Baumgart, Amanda, additional, Dunn, Louese, additional, Gutman, Talia, additional, Harris, Tess, additional, Lightstone, Liz, additional, Scholes-Robertson, Nicole, additional, Shen, Jenny I., additional, Wheeler, David C., additional, White, David M., additional, Wilkie, Martin, additional, Craig, Jonathan C., additional, Jadoul, Michel, additional, and Winkelmayer, Wolfgang C., additional

Published
2020
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41. Establishing a Core Outcome Set for Peritoneal Dialysis: Report of the SONG-PD (Standardized Outcomes in Nephrology–Peritoneal Dialysis) Consensus Workshop

Author

Manera, Karine E., primary, Johnson, David W., additional, Craig, Jonathan C., additional, Shen, Jenny I., additional, Gutman, Talia, additional, Cho, Yeoungjee, additional, Wang, Angela Yee-Moon, additional, Brown, Edwina A., additional, Brunier, Gillian, additional, Dong, Jie, additional, Dunning, Tony, additional, Mehrotra, Rajnish, additional, Naicker, Saraladevi, additional, Pecoits-Filho, Roberto, additional, Perl, Jeffrey, additional, Wilkie, Martin, additional, Tong, Allison, additional, Levin, Adeera, additional, Liew, Adrian, additional, Cueto Manzano, Alfonso, additional, Abu Alfa, Ali, additional, Neu, Alicia, additional, Baumgart, Amanda, additional, Bernier-Jean, Amelie, additional, Kelly, Amy, additional, Figueiredo, Ana, additional, Matus, Andrea, additional, Viecelli, Andrea, additional, Ju, Angela, additional, Saxena, Anjali, additional, Sharma, Ankit, additional, Nadeau-Fredette, Annie-Claire, additional, Teixeira-Pinto, Armando, additional, Mendelson, Asher, additional, Kelly, Ayano, additional, Goh, Bak Leong, additional, Sautenet, Benedicte, additional, Manns, Braden, additional, Hemmelgarn, Brenda, additional, Robinson, Bruce, additional, Hanson, Camilla, additional, Cheung, Catherine, additional, Guha, Chandana, additional, Logeman, Charlotte, additional, Szeto, Cheuk-Chun, additional, Rutherford, Claudia, additional, Schwartz, Daniel, additional, Sumpton, Daniel, additional, Johnson, David, additional, Wheeler, David, additional, Brown, Edwina, additional, O’Lone, Emma, additional, Au, Eric, additional, Goffin, Eric, additional, Finkelstein, Fred, additional, Abraham, Georgi, additional, Germino, Greg, additional, Hurst, Helen, additional, Kawanishi, Hideki, additional, Htay, Htay, additional, Yap, Hui Kim, additional, Teitelbaum, Isaac, additional, Chen, Jenny, additional, Shen, Jenny, additional, Neumann, Joanna, additional, Bargman, Joanne, additional, Morelle, Johann, additional, Craig, Jonathan, additional, Kilonzo, Kajiru Gad, additional, Yeates, Karen, additional, Manera, Karine, additional, Azukaitis, Karolis, additional, Van, Kim Linh, additional, Dunn, Louese, additional, Krishnan, Mahesh, additional, Lambie, Mark, additional, Howell, Martin, additional, Schreiber, Martin, additional, Oliver, Matthew, additional, Sanabria, Mauricio Rafael, additional, Nataatmadja, Melissa, additional, Lichodziejewska-Niemierko, Monika, additional, Verdin, Nancy, additional, Mann, Neelam, additional, Boudville, Neil, additional, Evangelidis, Nicole, additional, Scholes-Robertson, Nicole, additional, Blake, Peter, additional, Nourse, Peter, additional, Tugwell, Peter, additional, Li, Philip Kam-Tao, additional, McGee, Richard, additional, Quinn, Robert, additional, Crowe, Sally, additional, Anumudu, Samaya, additional, Bernays, Sarah, additional, Naicker, Sarala, additional, Wilson, Scott, additional, Nessim, Sharon, additional, Teo, Sharon, additional, Carter, Simon A., additional, Davies, Simon, additional, Sweety, Soheli Ahmed, additional, Toffelmire, Ted, additional, Jassal, Vanita, additional, Jha, Vivekanand, additional, da Silva, Viviane Calice, additional, Van Biesen, Wim, additional, Winkelmayer, Wolfgang, additional, Ito, Yasuhiko, additional, Kim, Yong-Lim, additional, and Butt, Zeeshan, additional

Published
2020
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42. “Can I go to Glasgow?” Learnings from patient involvement at the 17th Congress of the International Society for Peritoneal Dialysis (ISPD)

Author

Gutman, Talia, primary, Manera, Karine E, additional, Baumgart, Amanda, additional, Johnson, David W, additional, Wilkie, Martin, additional, Boudville, Neil, additional, Craig, Jonathan C, additional, Dong, Jie, additional, Jesudason, Shilpa, additional, Mehrotra, Rajnish, additional, Neu, Alicia, additional, Shen, Jenny I, additional, Van Biesen, Wim, additional, Blake, Peter G, additional, Brunier, Gillian, additional, Cho, Yeoungjee, additional, Jefferson, Nichole, additional, Lenga, Ilan, additional, Mann, Neelem, additional, Mendelson, Asher A, additional, Perl, Jeffrey, additional, Sanabria, Rafael Mauricio, additional, Scholes-Roberston, Nicole, additional, Schwartz, Daniel, additional, Teitelbaum, Isaac, additional, and Tong, Allison, additional

Published
2020
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43. Reporting guideline for priority setting of health research (REPRISE)

Author

Tong, Allison, primary, Synnot, Anneliese, additional, Crowe, Sally, additional, Hill, Sophie, additional, Matus, Andrea, additional, Scholes-Robertson, Nicole, additional, Oliver, Sandy, additional, Cowan, Katherine, additional, Nasser, Mona, additional, Bhaumik, Soumyadeep, additional, Gutman, Talia, additional, Baumgart, Amanda, additional, and Craig, Jonathan C, additional

Published
2019
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46. Perspectives on mental health among patients receiving dialysis.

Author

Nataatmadja, Melissa, Evangelidis, Nicole, Manera, Karine E, Cho, Yeoungjee, Johnson, David W, Craig, Jonathan C, Baumgart, Amanda, Hanson, Camilla S, Shen, Jenny, Guha, Chandana, Scholes-Robertson, Nicole, Tong, Allison, and SONG-PD, for SONG-HD and

Subjects
MENTAL health, HEMODIALYSIS patients, PATIENTS' attitudes, MEDICAL personnel, EMOTIONS, PATIENT autonomy
Abstract

Background Diminished mental health is associated with increased morbidity and mortality and may contribute to loss of independence and motivation in patients receiving dialysis and their caregivers. Increased understanding of the patient perspective on triggers, impacts and strategies for managing mental health may inform ways to address mental health conditions in this population. Methods A secondary thematic analysis was undertaken using data from the Standardized Outcomes in Nephrology (SONG)-Hemodialysis and SONG-Peritoneal Dialysis projects. We extracted and analysed data on the perceived causes, meaning, impact and management of mental health in patients receiving dialysis from 26 focus groups (in six countries), multinational Delphi surveys and consensus workshops. Results A total of 644 patients and caregivers participated. We identified five themes: bound to dialysis (forced into isolation, enslaved to a machine, stress of relentless planning and grieving the loss of a normal life), underrecognized and ignored (missed by health practitioners, need for mental health support), an uncertain future (dreading complications, coming to terms with mortality), developing self-reliance (vulnerability in being solely responsible for dialysis, sustaining motivation for dialysis, necessity for self-vigilance and taking charge to regulate emotions) and responding to a lifestyle overhaul (guilt of burdening family, controlling symptoms for overall mental wellness, protecting independence and trying to feel grateful). Conclusions Patients receiving dialysis and their caregivers endure mental and emotional distress attributed to the burden of dialysis, lifestyle restrictions, the constant threat of death and symptom burden, which can impair motivation for self-management. Increased attention to monitoring and management of mental health in this population is needed. [ABSTRACT FROM AUTHOR]

Published
2021
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47. Patient Perspectives on the Meaning and Impact of Fatigue in Hemodialysis: A Systematic Review and Thematic Analysis of Qualitative Studies

Author

Jacobson, Jack, primary, Ju, Angela, additional, Baumgart, Amanda, additional, Unruh, Mark, additional, O’Donoghue, Donal, additional, Obrador, Gregorio, additional, Craig, Jonathan C., additional, Dapueto, Juan M., additional, Dew, Mary Amanda, additional, Germain, Michael, additional, Fluck, Richard, additional, Davison, Sara N., additional, Jassal, Sarbjit Vanita, additional, Manera, Karine, additional, Smith, Alice C., additional, and Tong, Allison, additional

Published
2019
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48. Patient and caregiver perspectives on burnout in peritoneal dialysis

Author

Oveyssi, Justin, Manera, Karine E, Baumgart, Amanda, Cho, Yeoungjee, Forfang, Derek, Saxena, Anjali, Craig, Jonathan C, Fung, Samuel KS, Harris, David, Johnson, David W, Kerr, Peter G, Lee, Achilles, Ruiz, Lorena, Tong, Matthew, Wang, Angela Yee-Moon, Yip, Terence, Tong, Allison, and Shen, Jenny I

Abstract

Background: Peritoneal dialysis (PD) can offer patients more autonomy and flexibility compared with in-center hemodialysis (HD). However, burnout – defined as mental, emotional, or physical exhaustion that leads to thoughts of discontinuing PD – is associated with an increased risk of transfer to HD. We aimed to describe the perspectives of burnout among patients on PD and their caregivers.Methods: In this focus group study, 81 patients and 45 caregivers participated in 14 focus groups from 9 dialysis units in Australia, Hong Kong, and the United States. Transcripts were analyzed thematically.Results: We identified two themes. Suffering an unrelenting responsibilitycontributed to burnout, as patients and caregivers felt overwhelmed by the daily regimen, perceived their life to be coming to a halt, tolerated the PD regimen for survival, and had to bear the burden and uncertainty of what to expect from PD alone. Adapting and building resilienceagainst burnout encompassed establishing a new normal, drawing inspiration and support from family, relying on faith and hope for motivation, and finding meaning in other activities.Conclusions: For patients on PD and their caregivers, burnout was intensified by perceiving PD as an unrelenting, isolating responsibility that they had no choice but to endure, even if it held them back from doing other activities in life. More emphasis on developing strategies to adapt and build resilience could prevent or minimize burnout.

Published
2021
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49. Australian Workshops on Patients' Perspectives on Hemodialysis and Incremental Start.

Author

Hegerty K, Jaure A, Scholes-Robertson N, Howard K, Ju A, Evangelidis N, Wolley M, Baumgart A, Johnson DW, Hawley CM, Reidlinger D, Hickey L, Welch A, Cho Y, Kerr PG, Roberts MA, Shen JI, Craig J, Krishnasamy R, and Viecelli AK

Abstract

Introduction: Most patients with kidney failure commence and continue hemodialysis (HD) thrice weekly. Incremental initiation (defined as HD less than thrice weekly) is increasingly considered to be safe and less burdensome, but little is known about patients' perspectives. We aimed to describe patients' priorities and concerns regarding incremental HD., Methods: Patients currently, previously, or soon to be receiving HD in Australia participated in two 90-minute online workshops to discuss views about HD focusing on incremental start and priorities for trial outcomes. Transcripts were analyzed using thematic analysis. Outcomes were ranked on the basis of the sum of participants' priority scores (i.e., single allocation of 3 points for most important, 2 for second, and 1 for third most important outcome)., Results: All 26 participants (1 caregiver and 25 patients) preferred an incremental HD approach. The top prioritized outcomes were quality of life (QOL) (56 points), residual kidney function (RKF) (27 points), and mortality (16 points). The following 4 themes underpinning outcome priorities, experience, and safety concerns were identified: (i) unpreparedness and pressure to adapt, (ii) disruption to daily living, (iii) threats to safety, and (iv) hope and future planning., Conclusion: Patients with kidney failure preferred an incremental start to HD to minimize disruption to daily living and reduce the negative impacts on their education, ability to work, and family life. QOL was the most critically important outcome, followed by RKF and survival., (© 2022 Published by Elsevier Inc. on behalf of the International Society of Nephrology.)

Published
2022
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50. Nephrologists' Perspectives on Gender Disparities in CKD and Dialysis.

Author

Tong A, Evangelidis N, Kurnikowski A, Lewandowski M, Bretschneider P, Oberbauer R, Baumgart A, Scholes-Robertson N, Stamm T, Carrero JJ, Pecoits-Filho R, and Hecking M

Abstract

Introduction: Globally, there are more women with chronic kidney disease (CKD), yet they comprise only 40% of patients receiving kidney replacement therapy by dialysis. We aimed to describe the perspectives of nephrologists on gender disparities in access to care and outcomes in CKD and dialysis., Methods: We conducted semistructured interviews with 51 nephrologists (28, 55% women) from 22 countries from October 2019 to April 2020. Transcripts were analyzed thematically., Results: We identified 6 themes. Related to women were primary commitment to caregiving (with subthemes of coordinating care, taking charge of health management, deprioritizing own health, centrality of family in decision-making); vigilance and self-reliance (diligence and conscientiousness, stoicism and tolerating symptoms, avoiding burden on family, isolation and coping alone); and stereotyping, stigma, and judgment (body image, dismissed as anxiety, shame and embarrassment, weakness and frailty). Related to men was protecting masculinity (safeguarding the provider role, clinging to control, self-regard, and entitled). Decisional power and ownership included men's dominance in decision-making and women's analytical approach in treatment decisions. Inequities compounded by social disadvantage (financial and transport barriers, without social security, limited literacy, entrenched discrimination, vulnerability) were barriers to care for women, particularly in socioeconomically disadvantaged communities., Conclusion: Nephrologists perceived that women with CKD faced many challenges in accessing care related to social norms and roles of caregiving responsibilities, disempowerment, lack of support, stereotyping by clinicians, and entrenched social and economic disadvantage. Addressing power differences, challenging systemic patriarchy, and managing unconscious bias may help to improve equitable care and outcomes for all people with CKD., (© 2021 International Society of Nephrology. Published by Elsevier Inc.)

Published
2021
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