A Focus Group Study of Self-Management in Patients With Glomerular Disease

Simon A Carter; Claris Teng; Talia Gutman; Charlotte Logeman; Dan Cattran; Liz Lightstone; Arvind Bagga; Sean J Barbour; Jonathan Barratt; John Boletis; Dawn J Caster; Rosanna Coppo; Fernando C Fervenza; Jürgen Floege; Michelle A Hladunewich; Jonathan J Hogan; A Richard Kitching; Richard A Lafayette; Ana Malvar; Jai Radhakrishnan; Brad H Rovin; Nicole Scholes-Robertson; Hernán Trimarchi; Hong Zhang; Karolis Azukaitis; Yeoungjee Cho; Andrea K Viecelli; Louese Dunn; David Harris; David W Johnson; Peter G Kerr; Paul Laboi; Jessica Ryan; Jenny I Shen; Lorena Ruiz; Angela Yee-Moon Wang; Achilles Hoi Kan Lee; Samuel Fung Ka Shun; Matthew Ka-Hang Tong; Armando Teixeira-Pinto; Martin Wilkie; Stephen I Alexander; Jonathan C Craig; Adam Martin; Allison Tong

doi:10.1016/j.ekir.2021.10.011

A Focus Group Study of Self-Management in Patients With Glomerular Disease

Kidney Int Rep. 2021 Oct 30;7(1):56-67. doi: 10.1016/j.ekir.2021.10.011. eCollection 2022 Jan.

Authors

Simon A Carter^{1

2}, Claris Teng², Talia Gutman^{1

2}, Charlotte Logeman², Dan Cattran^{3

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

9}, John Boletis¹⁰, Dawn J Caster¹¹, Rosanna Coppo¹², Fernando C Fervenza¹³, Jürgen Floege¹⁴, Michelle A 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}, Hernán 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 Fung Ka Shun³⁷, Matthew Ka-Hang Tong³⁸, Armando Teixeira-Pinto^{1

2}, Martin Wilkie³⁹, Stephen I Alexander², Jonathan C Craig⁴⁰, Adam Martin², Allison Tong^{1

2}

Affiliations

¹ Sydney School of Public Health, The University of Sydney, Sydney, Australia.
² Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, 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, UK.
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 Cardiovascular Sciences, University of Leicester, Leicester, UK.
⁹ John Walls Renal Unit, Leicester General Hospital, Leicester, UK.
¹⁰ Nephrology Department and Renal Transplantation Unit, Medical School, University of Athens, Laiko Hospital, Athens, Greece.
¹¹ Division of Nephrology, University of Louisville, Louisville, Kentucky, USA.
¹² Fondazione Ricerca Molinette, Regina Margherita Hospital, Turin, Italy.
¹³ Division of Nephrology and Hypertension, Department of Internal Medicine, Mayo Clinic, Rochester, Minnesota, USA.
¹⁴ Department of Nephrology and Clinical Immunology, RWTH University Hospital, Aachen, Germany.
¹⁵ Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada.
¹⁶ Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA.
¹⁷ Department of Nephrology, Monash Health, Victoria, Australia.
¹⁸ Centre for Inflammatory Diseases, Monash University Department of Medicine, Victoria, Australia.
¹⁹ Stanford University Medical Center, Stanford, California, USA.
²⁰ Department of Medicine, Division of Nephrology, Stanford University, Stanford, California, USA.
²¹ Nephrology, Hospital Fernández, Buenos Aires, Argentina.
²² Columbia University Irving Medical Center, New York, New York, USA.
²³ Department of Internal Medicine, Division of Nephrology, The Ohio State University Wexner Medical Center, Columbus, Ohio, USA.
²⁴ Nephrology Service and Kidney Transplantation Unit, Hospital Britanico de Buenos Aires, Buenos Aires, Argentina.
²⁵ Renal Division, Peking University First Hospital, Beijing, People's Republic of China.
²⁶ Clinic of Pediatrics, Institute of Clinical Medicine, Faculty of Medicine, Vilnius University, Vilnius, Lithuania.
²⁷ Department of Nephrology, Princess Alexandra Hospital, Brisbane, Australia.
²⁸ Australasian Kidney Trials Network, University of Queensland, Brisbane, Australia.
²⁹ Translational Research Institute, Brisbane, Australia.
³⁰ Sheffield Kidney Institute, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK.
³¹ Westmead Institute for Medical Research, The University of Sydney, Sydney, Australia.
³² Sydney Medical School, The University of Sydney, Sydney, Australia.
³³ Department of Nephrology, York Hospital, York, UK.
³⁴ Division of Nephrology and Hypertension, Los Angeles Biomedical Research Institute at Harbor-UCLA Medical Center, Torrance, California, USA.
³⁵ Department of Medicine, Queen Mary Hospital, The University of Hong Kong, Pok Fu Lam, Hong Kong SAR, China.
³⁶ Department of Medicine, Tuen Mun Hospital, Tuen Mun, Hong Kong SAR, China.
³⁷ Department of Medicine and Geriatrics, Princess Margaret Hospital, Kowloon, Hong Kong SAR, China.
³⁸ Department of Medicine and Geriatrics, Pok Oi Hospital, Au Tau, Hong Kong SAR, China.
³⁹ Department of Nephrology, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK.
⁴⁰ College of Medicine and Public Health, Flinders University, Adelaide, Australia.

Abstract

Introduction: Patients with glomerular disease experience symptoms that impair their physical and mental health while managing their treatments, diet, appointments and monitoring general and specific indicators of health and their illness. We sought to describe the perspectives of patients and their care partners on self-management in glomerular disease.

Methods: We conducted 16 focus groups involving adult patients with glomerular disease (n = 101) and their care partners (n = 34) in Australia, Hong Kong, the United Kingdom, and United States. Transcripts were analyzed thematically.

Results: We identified the following 4 themes: empowered in autonomy (gaining confidence through understanding, taking ownership of disease and treatment, learning a positive health approach); overwhelmed by compounding treatment burdens (financially undermined and depleted, demoralized by side effects and harms, frustrated by fragmented and inflexible care, fear of possible drug harms); striving for stability and normalcy (making personal sacrifices, maximizing life participation, attentiveness to bodily signs, avoiding precarious health states, integrating medicines into routines); and necessity of health-sustaining relationships (buoyed by social support, fulfilling meaningful responsibilities, sharing and normalizing experiences, seeking a trusting and respectful alliance).

Conclusion: Patients with glomerular disease and their care partners value their capacity for autonomy and disease ownership, stability of their health, and relationships that support self-management. Strategies directed at strengthening these factors may increase self-efficacy and improve the care and outcomes for patients with glomerular disease.

Keywords: focus groups; glomerulonephritis; personal autonomy; self-management; therapeutic alliance.

Abstract

Grants and funding