Multicenter Study

. 2020 May 7;15(5):673-684.

doi: 10.2215/CJN.13101019. Epub 2020 Apr 30.

Identifying Outcomes Important to Patients with Glomerular Disease and Their Caregivers

Simon A Carter^{1

2}, Talia Gutman^{1

2}, Charlotte Logeman², Dan Cattran^{3

4}, Liz Lightstone⁵, Arvind Bagga⁶, Sean J Barbour⁷, Jonathan Barratt^{8

9}, John Boletis¹⁰, Dawn Caster¹¹, Rosanna Coppo¹², Fernando C Fervenza¹³, Jürgen Floege¹⁴, Michelle Hladunewich^{3

15}, Jonathan J Hogan¹⁶, A Richard Kitching^{17

18}, Richard A Lafayette^{19

20}, Ana Malvar²¹, Jai Radhakrishnan²², Brad H Rovin²³, Nicole Scholes-Robertson^{1

2}, Hérnan Trimarchi²⁴, Hong Zhang²⁵, Karolis Azukaitis²⁶, Yeoungjee Cho^{27

28

29}, Andrea K Viecelli^{27

28}, Louese Dunn³⁰, David Harris^{31

32}, David W Johnson^{27

28

29}, Peter G Kerr¹⁸, Paul Laboi³³, Jessica Ryan^{17

18}, Jenny I Shen³⁴, Lorena Ruiz³⁴, Angela Yee-Moon Wang³⁵, Achilles Hoi Kan Lee³⁶, Samuel Fung³⁷, Matthew Ka-Hang Tong³⁸, Armando Teixeira-Pinto^{1

2}, Martin Wilkie³⁹, Stephen I Alexander², Jonathan C Craig⁴⁰, Allison Tong^{1

2}; SONG-GD Investigators

Affiliations

¹ Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
² Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, New South Wales, Australia.
³ Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada.
⁴ Toronto General Research Institute, Toronto, Ontario, Canada.
⁵ Centre for Inflammatory Disease, Faculty of Medicine, Imperial College London, London, United Kingdom.
⁶ Department of Pediatrics, All India Institute of Medical Sciences, New Delhi, India.
⁷ Division of Nephrology, Department of Medicine, University of British Columbia, Vancouver, British Columbia, Canada.
⁸ Department of Infection, Immunity and Inflammation, University of Leicester, Leicester, United Kingdom.
⁹ John Walls Renal Unit, Leicester General Hospital, Leicester, United Kingdom.
¹⁰ Nephrology Department and Renal Transplantation Unit, Medical School, University of Athens, Laiko Hospital, Athens, Greece.
¹¹ Division of Nephrology, University of Louisville, Kentucky, Louisville.
¹² Fondazione Ricerca Molinette, Regina Margherita Hospital, Turin, Italy.
¹³ Division of Nephrology and Hypertension, Department of Internal Medicine, Mayo Clinic, Rochester, Minnesota.
¹⁴ Department of Nephrology and Clinical Immunology, Rheinisch-Westfälische Technische Hochschule University Hospital, Aachen, Germany.
¹⁵ Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada.
¹⁶ Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania.
¹⁷ Department of Nephrology, Monash Health, Clayton, Victoria, Australia.
¹⁸ Centre for Inflammatory Diseases, Department of Medicine, Monash University, Clayton, Victoria, Australia.
¹⁹ Stanford University Medical Center, Stanford, California.
²⁰ Division of Nephrology, Department of Medicine, Stanford University, Stanford, California.
²¹ Nephrology, Hospital Fernández, Buenos Aires, Argentina.
²² Colombia University Medical Center, New York, New York.
²³ Division of Nephrology, Department of Internal Medicine, Ohio State University Wexner Medical Center, Columbus, Ohio.
²⁴ Nephrology Service and Kidney Transplantation Unit, Hospital Britanico de Buenos Aires, Buenos Aires, Argentina.
²⁵ Renal Division, Peking University First Hospital, Beijing, China.
²⁶ Clinic of Pediatrics, Institute of Clinical Medicine, Faculty of Medicine, Vilnius University, Vilnius, Lithuania.
²⁷ Department of Nephrology, Princess Alexandra Hospital, Brisbane, Queensland, Australia.
²⁸ Australasian Kidney Trials Network, University of Queensland, Brisbane, Queensland, Australia.
²⁹ Translational Research Institute, Brisbane, Queensland, Australia.
³⁰ Sheffield Kidney Institute, Sheffield Teaching Hospitals National Health Service Foundation Trust, Sheffield, United Kingdom.
³¹ Westmead Institute for Medical Research, The University of Sydney, Sydney, New South Wales, Australia.
³² Sydney Medical School, The University of Sydney, Sydney, New South Wales, Australia.
³³ Department of Nephrology, York Hospital, York, United Kingdom.
³⁴ Division of Nephrology and Hypertension, Los Angeles Biomedical Research Institute at Harbor-University of California, Los Angeles Medical Center, Torrance, California.
³⁵ Department of Medicine, Queen Mary Hospital, University of Hong Kong, Hong Kong, China.
³⁶ Department of Medicine, Tuen Mun Hospital, Hong Kong, China.
³⁷ Department of Medicine and Geriatrics, Princess Margaret Hospital, Hong Kong, China.
³⁸ Department of Medicine and Geriatrics, Pok Oi Hospital, Hong Kong, China.
³⁹ Department of Nephrology, Sheffield Teaching Hospitals National Health Service Foundation Trust, Sheffield, United Kingdom.
⁴⁰ College of Medicine and Public Health, Flinders University, Adelaide, South Australia, Australia.

PMID: 32354728
PMCID: PMC7269216
DOI: 10.2215/CJN.13101019

Multicenter Study

Identifying Outcomes Important to Patients with Glomerular Disease and Their Caregivers

Simon A Carter et al. Clin J Am Soc Nephrol. 2020.

. 2020 May 7;15(5):673-684.

doi: 10.2215/CJN.13101019. Epub 2020 Apr 30.

Authors

Affiliations

¹ Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
² Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, New South Wales, Australia.
³ Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada.
⁴ Toronto General Research Institute, Toronto, Ontario, Canada.
⁵ Centre for Inflammatory Disease, Faculty of Medicine, Imperial College London, London, United Kingdom.
⁶ Department of Pediatrics, All India Institute of Medical Sciences, New Delhi, India.
⁷ Division of Nephrology, Department of Medicine, University of British Columbia, Vancouver, British Columbia, Canada.
⁸ Department of Infection, Immunity and Inflammation, University of Leicester, Leicester, United Kingdom.
⁹ John Walls Renal Unit, Leicester General Hospital, Leicester, United Kingdom.
¹⁰ Nephrology Department and Renal Transplantation Unit, Medical School, University of Athens, Laiko Hospital, Athens, Greece.
¹¹ Division of Nephrology, University of Louisville, Kentucky, Louisville.
¹² Fondazione Ricerca Molinette, Regina Margherita Hospital, Turin, Italy.
¹³ Division of Nephrology and Hypertension, Department of Internal Medicine, Mayo Clinic, Rochester, Minnesota.
¹⁴ Department of Nephrology and Clinical Immunology, Rheinisch-Westfälische Technische Hochschule University Hospital, Aachen, Germany.
¹⁵ Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada.
¹⁶ Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania.
¹⁷ Department of Nephrology, Monash Health, Clayton, Victoria, Australia.
¹⁸ Centre for Inflammatory Diseases, Department of Medicine, Monash University, Clayton, Victoria, Australia.
¹⁹ Stanford University Medical Center, Stanford, California.
²⁰ Division of Nephrology, Department of Medicine, Stanford University, Stanford, California.
²¹ Nephrology, Hospital Fernández, Buenos Aires, Argentina.
²² Colombia University Medical Center, New York, New York.
²³ Division of Nephrology, Department of Internal Medicine, Ohio State University Wexner Medical Center, Columbus, Ohio.
²⁴ Nephrology Service and Kidney Transplantation Unit, Hospital Britanico de Buenos Aires, Buenos Aires, Argentina.
²⁵ Renal Division, Peking University First Hospital, Beijing, China.
²⁶ Clinic of Pediatrics, Institute of Clinical Medicine, Faculty of Medicine, Vilnius University, Vilnius, Lithuania.
²⁷ Department of Nephrology, Princess Alexandra Hospital, Brisbane, Queensland, Australia.
²⁸ Australasian Kidney Trials Network, University of Queensland, Brisbane, Queensland, Australia.
²⁹ Translational Research Institute, Brisbane, Queensland, Australia.
³⁰ Sheffield Kidney Institute, Sheffield Teaching Hospitals National Health Service Foundation Trust, Sheffield, United Kingdom.
³¹ Westmead Institute for Medical Research, The University of Sydney, Sydney, New South Wales, Australia.
³² Sydney Medical School, The University of Sydney, Sydney, New South Wales, Australia.
³³ Department of Nephrology, York Hospital, York, United Kingdom.
³⁴ Division of Nephrology and Hypertension, Los Angeles Biomedical Research Institute at Harbor-University of California, Los Angeles Medical Center, Torrance, California.
³⁵ Department of Medicine, Queen Mary Hospital, University of Hong Kong, Hong Kong, China.
³⁶ Department of Medicine, Tuen Mun Hospital, Hong Kong, China.
³⁷ Department of Medicine and Geriatrics, Princess Margaret Hospital, Hong Kong, China.
³⁸ Department of Medicine and Geriatrics, Pok Oi Hospital, Hong Kong, China.
³⁹ Department of Nephrology, Sheffield Teaching Hospitals National Health Service Foundation Trust, Sheffield, United Kingdom.
⁴⁰ College of Medicine and Public Health, Flinders University, Adelaide, South Australia, Australia.

PMID: 32354728
PMCID: PMC7269216
DOI: 10.2215/CJN.13101019

Abstract

Background and objectives: Shared decision making in patients with glomerular disease remains challenging because outcomes important to patients remain largely unknown. We aimed to identify and prioritize outcomes important to patients and caregivers and to describe reasons for their choices.

Design: , setting, participants, & measurementsWe purposively sampled adult patients with glomerular disease and their caregivers from Australia, Hong Kong, the United Kingdom, and the United States. Participants identified, discussed, and ranked outcomes in focus groups using the nominal group technique; a relative importance score (between zero and one) was calculated. Qualitative data were analyzed thematically.

Results: Across 16 focus groups, 134 participants (range, 19-85 years old; 51% women), including 101 patients and 33 caregivers, identified 58 outcomes. The ten highest-ranked outcomes were kidney function (importance score of 0.42), mortality (0.29), need for dialysis or transplant (0.22), life participation (0.18), fatigue (0.17), anxiety (0.13), family impact (0.12), infection and immunity (0.12), ability to work (0.11), and BP (0.11). Three themes explained the reasons for these rankings: constraining day-to-day experience, impaired agency and control over health, and threats to future health and family.

Conclusions: Patients with glomerular disease and their caregivers highly prioritize kidney health and survival, but they also prioritize life participation, fatigue, anxiety, and family impact.

Keywords: Anxiety; Blood Pressure Determination; Caregivers; Data Accuracy; Decision Making; Family Relations; Fatigue; Focus Groups; Infections; Shared; blood pressure; renal dialysis.

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Figures

**Figure 1.**
**Kidney health, mortality and patient-reported outcomes were the most highly prioritized out of 58 outcomes ranked by importance score (error bars represent 95% confidence interval).**

**Figure 2.**
**Thematic schema indicating three themes that underpin the prioritization of major outcome groups.**

See this image and copyright information in PMC

Comment in

What It Means to Live with Focal Segmental Glomerulosclerosis.
Bressler K. Bressler K. Clin J Am Soc Nephrol. 2020 May 7;15(5):587-588. doi: 10.2215/CJN.02890320. Clin J Am Soc Nephrol. 2020. PMID: 32354729 Free PMC article. No abstract available.
Ask and It Shall Be Given: Patient-Centered Outcomes in Glomerular Diseases.
Canetta PA, Bomback AS. Canetta PA, et al. Clin J Am Soc Nephrol. 2020 May 7;15(5):594-596. doi: 10.2215/CJN.03180320. Clin J Am Soc Nephrol. 2020. PMID: 32354730 Free PMC article. No abstract available.

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Identifying Outcomes Important to Patients with Glomerular Disease and Their Caregivers

Affiliations

Identifying Outcomes Important to Patients with Glomerular Disease and Their Caregivers

Authors

Affiliations

Abstract

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LinkOut - more resources

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Medical