Health-Related Quality of Life in Focal Segmental Glomerular Sclerosis and Minimal Change Disease: A Qualitative Study of Children and Adults to Inform Patient-Reported OutcomesPlain-Language Summary
Rationale & Objective: Assessment of how patients feel and function is needed for clinical care and research for focal segmental glomerulosclerosis (FSGS) and minimal change disease (MCD). The objective of this study was to develop a patient-reported outcome assessment appropriate for use in...
| Main Authors: | , , , , , , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
Elsevier
2021-07-01
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| Series: | Kidney Medicine |
| Subjects: | |
| Online Access: | http://www.sciencedirect.com/science/article/pii/S2590059521000698 |
| _version_ | 1818737635285270528 |
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| author | Noelle E. Carlozzi Susan F. Massengill Howard Trachtman Liron Walsh Neena Singhal Joseph M. LaVigne Jennifer A. Miner Hailey E. Desmond Christian Lynam Debbie S. Gipson |
| author_facet | Noelle E. Carlozzi Susan F. Massengill Howard Trachtman Liron Walsh Neena Singhal Joseph M. LaVigne Jennifer A. Miner Hailey E. Desmond Christian Lynam Debbie S. Gipson |
| author_sort | Noelle E. Carlozzi |
| collection | DOAJ |
| description | Rationale & Objective: Assessment of how patients feel and function is needed for clinical care and research for focal segmental glomerulosclerosis (FSGS) and minimal change disease (MCD). The objective of this study was to develop a patient-reported outcome assessment appropriate for use in children and adults with FSGS and MCD. Study Design: Qualitative study using semi-structured interviews. Setting & Participants: 48 semi-structured interviews with children aged 8 to 17 years (n = 11) and adults (n = 10) with FSGS and children aged 8 to 17 (n = 11) and adults (n = 16) with MCD recruited from 3 academic medical centers. Analytical Approach: Latent content analysis. Results: FSGS and MCD have a pervasive and comparable impact on physical, social, and mental health-related quality of life regardless of age or diagnosis. Physical symptoms of swelling, fatigue, and pain were articulated by most participants. Disease management was also a frequent topic of discussion; participants described their experiences with medication and associated side effects, as well as lifestyle changes made to manage their disease (ie, dietary changes and frequent medical appointments). These discussions often identified a profound impact on physical abilities and life participation. In many instances, participants described the negative impact these symptoms had on their mood and sense of self, with most participants reporting feelings of anxiety. Limitations: Participants were primarily non-Hispanic White and English speaking, which may limit generalizability. Conclusions: Our results suggest that there are commonalities to the FSGS-MCD patient experience of health-related quality of life that will enable the generation of a disease-specific FSGS-MCD patient-reported outcomes instrument for use in children and adults. The development of this tool is intended to facilitate better care and support clinical research for these individuals. |
| first_indexed | 2024-12-18T00:56:11Z |
| format | Article |
| id | doaj.art-a3fd02fcb9ac4f85bf35c2c474d40540 |
| institution | Directory Open Access Journal |
| issn | 2590-0595 |
| language | English |
| last_indexed | 2024-12-18T00:56:11Z |
| publishDate | 2021-07-01 |
| publisher | Elsevier |
| record_format | Article |
| series | Kidney Medicine |
| spelling | doaj.art-a3fd02fcb9ac4f85bf35c2c474d405402022-12-21T21:26:30ZengElsevierKidney Medicine2590-05952021-07-0134484497.e1Health-Related Quality of Life in Focal Segmental Glomerular Sclerosis and Minimal Change Disease: A Qualitative Study of Children and Adults to Inform Patient-Reported OutcomesPlain-Language SummaryNoelle E. Carlozzi0Susan F. Massengill1Howard Trachtman2Liron Walsh3Neena Singhal4Joseph M. LaVigne5Jennifer A. Miner6Hailey E. Desmond7Christian Lynam8Debbie S. Gipson9Department of Physical Medicine & Rehabilitation, University of Michigan, Ann Arbor, MI; Address for Correspondence: Noelle E. Carlozzi, PhD, Department of Physical Medicine & Rehabilitation, University of Michigan, 1540 E Hospital Dr, Ann Arbor, MI 48109.Division of Pediatric Nephrology, Levine Children’s Hospital/Atrium Health, Charlotte, NCDivision of Nephrology, Department of Pediatrics, New York University Grossman School of Medicine, New York, NYGoldfinch Bio, Cambridge, MADepartment of Physical Medicine & Rehabilitation, University of Michigan, Ann Arbor, MIDivision of Nephrology, Department of Pediatrics, University of Michigan, Ann Arbor, MIDepartment of Physical Medicine & Rehabilitation, University of Michigan, Ann Arbor, MIDivision of Nephrology, Department of Pediatrics, University of Michigan, Ann Arbor, MIGoldfinch Bio, Cambridge, MADivision of Nephrology, Department of Pediatrics, University of Michigan, Ann Arbor, MIRationale & Objective: Assessment of how patients feel and function is needed for clinical care and research for focal segmental glomerulosclerosis (FSGS) and minimal change disease (MCD). The objective of this study was to develop a patient-reported outcome assessment appropriate for use in children and adults with FSGS and MCD. Study Design: Qualitative study using semi-structured interviews. Setting & Participants: 48 semi-structured interviews with children aged 8 to 17 years (n = 11) and adults (n = 10) with FSGS and children aged 8 to 17 (n = 11) and adults (n = 16) with MCD recruited from 3 academic medical centers. Analytical Approach: Latent content analysis. Results: FSGS and MCD have a pervasive and comparable impact on physical, social, and mental health-related quality of life regardless of age or diagnosis. Physical symptoms of swelling, fatigue, and pain were articulated by most participants. Disease management was also a frequent topic of discussion; participants described their experiences with medication and associated side effects, as well as lifestyle changes made to manage their disease (ie, dietary changes and frequent medical appointments). These discussions often identified a profound impact on physical abilities and life participation. In many instances, participants described the negative impact these symptoms had on their mood and sense of self, with most participants reporting feelings of anxiety. Limitations: Participants were primarily non-Hispanic White and English speaking, which may limit generalizability. Conclusions: Our results suggest that there are commonalities to the FSGS-MCD patient experience of health-related quality of life that will enable the generation of a disease-specific FSGS-MCD patient-reported outcomes instrument for use in children and adults. The development of this tool is intended to facilitate better care and support clinical research for these individuals.http://www.sciencedirect.com/science/article/pii/S2590059521000698Focal segmental glomerulosclerosis (FSGS)minimal change disease (MCD)health-related quality of life (HRQOL)patient-reported outcome |
| spellingShingle | Noelle E. Carlozzi Susan F. Massengill Howard Trachtman Liron Walsh Neena Singhal Joseph M. LaVigne Jennifer A. Miner Hailey E. Desmond Christian Lynam Debbie S. Gipson Health-Related Quality of Life in Focal Segmental Glomerular Sclerosis and Minimal Change Disease: A Qualitative Study of Children and Adults to Inform Patient-Reported OutcomesPlain-Language Summary Kidney Medicine Focal segmental glomerulosclerosis (FSGS) minimal change disease (MCD) health-related quality of life (HRQOL) patient-reported outcome |
| title | Health-Related Quality of Life in Focal Segmental Glomerular Sclerosis and Minimal Change Disease: A Qualitative Study of Children and Adults to Inform Patient-Reported OutcomesPlain-Language Summary |
| title_full | Health-Related Quality of Life in Focal Segmental Glomerular Sclerosis and Minimal Change Disease: A Qualitative Study of Children and Adults to Inform Patient-Reported OutcomesPlain-Language Summary |
| title_fullStr | Health-Related Quality of Life in Focal Segmental Glomerular Sclerosis and Minimal Change Disease: A Qualitative Study of Children and Adults to Inform Patient-Reported OutcomesPlain-Language Summary |
| title_full_unstemmed | Health-Related Quality of Life in Focal Segmental Glomerular Sclerosis and Minimal Change Disease: A Qualitative Study of Children and Adults to Inform Patient-Reported OutcomesPlain-Language Summary |
| title_short | Health-Related Quality of Life in Focal Segmental Glomerular Sclerosis and Minimal Change Disease: A Qualitative Study of Children and Adults to Inform Patient-Reported OutcomesPlain-Language Summary |
| title_sort | health related quality of life in focal segmental glomerular sclerosis and minimal change disease a qualitative study of children and adults to inform patient reported outcomesplain language summary |
| topic | Focal segmental glomerulosclerosis (FSGS) minimal change disease (MCD) health-related quality of life (HRQOL) patient-reported outcome |
| url | http://www.sciencedirect.com/science/article/pii/S2590059521000698 |
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