Patient activation and its association with symptom burden and quality of life across the spectrum of chronic kidney disease stages in England

Abstract Background The knowledge, skills, and confidence to manage one’s own health is termed patient activation and can be assessed using the Patient Activation Measure (PAM). This measure is increasingly recommended for use in chronic kidney disease (CKD), but there is a need to better understand...

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Main Authors: Winnie Magadi, Courtney J. Lightfoot, Katherine E. Memory, Shalini Santhakumaran, Sabine N. van der Veer, Nicola Thomas, Rachel Gair, Alice C. Smith
Format: Article
Language:English
Published: BMC 2022-01-01
Series:BMC Nephrology
Subjects:
Online Access:https://doi.org/10.1186/s12882-022-02679-w
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author Winnie Magadi
Courtney J. Lightfoot
Katherine E. Memory
Shalini Santhakumaran
Sabine N. van der Veer
Nicola Thomas
Rachel Gair
Alice C. Smith
author_facet Winnie Magadi
Courtney J. Lightfoot
Katherine E. Memory
Shalini Santhakumaran
Sabine N. van der Veer
Nicola Thomas
Rachel Gair
Alice C. Smith
author_sort Winnie Magadi
collection DOAJ
description Abstract Background The knowledge, skills, and confidence to manage one’s own health is termed patient activation and can be assessed using the Patient Activation Measure (PAM). This measure is increasingly recommended for use in chronic kidney disease (CKD), but there is a need to better understand patient activation within this population. This work aimed to explore the association of PAM with patient-reported outcomes, namely symptom burden and health-related quality of life (HRQoL), to understand the relationship between patient activation and outcomes which are of importance to people with CKD. Methods Non-dialysis, dialysis, and kidney transplant patients from 14 renal units across England completed a survey comprising questionnaires assessing patient activation, symptom burden, and HRQoL. Latent class analysis (LCA) was used to determine HRQoL and symptom burden subgroups in the data. Multinomial logistic regression analyses were performed to investigate the associations between patient activation and symptom burden and HRQoL classes separately, adjusting for age, gender, ethnicity, deprivation and treatment modality. Results Three thousand thirteen participants (mean age 61.5 years, 61.8% males, and 47% haemodialysis) were included in the analysis. Patient activation was strongly associated with both the HRQoL and symptom burden classes identified, with highly activated patients more likely to report higher HRQoL (P = < 0.0001; OR 29.2, 95% CI 19.5–43.9) and fewer symptoms (P = < 0.0001; OR 25.9, 95% CI 16.8–40.2). Conclusion Lower activation levels are associated with a higher symptom burden and reduced HRQoL across the trajectory of CKD stages and treatment modalities. Therefore, targeted and holistic self-management support focussing on improving activation may have the potential to improve aspects of health experience which are valued by individuals living with kidney disease.
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spelling doaj.art-492e683162b14b24b1025aa3dfcec09d2022-12-21T23:56:29ZengBMCBMC Nephrology1471-23692022-01-0123111010.1186/s12882-022-02679-wPatient activation and its association with symptom burden and quality of life across the spectrum of chronic kidney disease stages in EnglandWinnie Magadi0Courtney J. Lightfoot1Katherine E. Memory2Shalini Santhakumaran3Sabine N. van der Veer4Nicola Thomas5Rachel Gair6Alice C. Smith7UK Renal RegistryLeicester Kidney Lifestyle Team, Department of Health Sciences, University of LeicesterLeicester Kidney Lifestyle Team, Department of Health Sciences, University of LeicesterUK Renal RegistryCentre for Health Informatics, Division of Informatics, Imaging and Data Sciences, Manchester Academic Health Science Centre, The University of ManchesterSchool of Health and Social Care, London South Bank UniversityUK Renal RegistryLeicester Kidney Lifestyle Team, Department of Health Sciences, University of LeicesterAbstract Background The knowledge, skills, and confidence to manage one’s own health is termed patient activation and can be assessed using the Patient Activation Measure (PAM). This measure is increasingly recommended for use in chronic kidney disease (CKD), but there is a need to better understand patient activation within this population. This work aimed to explore the association of PAM with patient-reported outcomes, namely symptom burden and health-related quality of life (HRQoL), to understand the relationship between patient activation and outcomes which are of importance to people with CKD. Methods Non-dialysis, dialysis, and kidney transplant patients from 14 renal units across England completed a survey comprising questionnaires assessing patient activation, symptom burden, and HRQoL. Latent class analysis (LCA) was used to determine HRQoL and symptom burden subgroups in the data. Multinomial logistic regression analyses were performed to investigate the associations between patient activation and symptom burden and HRQoL classes separately, adjusting for age, gender, ethnicity, deprivation and treatment modality. Results Three thousand thirteen participants (mean age 61.5 years, 61.8% males, and 47% haemodialysis) were included in the analysis. Patient activation was strongly associated with both the HRQoL and symptom burden classes identified, with highly activated patients more likely to report higher HRQoL (P = < 0.0001; OR 29.2, 95% CI 19.5–43.9) and fewer symptoms (P = < 0.0001; OR 25.9, 95% CI 16.8–40.2). Conclusion Lower activation levels are associated with a higher symptom burden and reduced HRQoL across the trajectory of CKD stages and treatment modalities. Therefore, targeted and holistic self-management support focussing on improving activation may have the potential to improve aspects of health experience which are valued by individuals living with kidney disease.https://doi.org/10.1186/s12882-022-02679-wPatient activationSymptom burdenQuality of lifeChronic kidney diseasePatient reported outcomes
spellingShingle Winnie Magadi
Courtney J. Lightfoot
Katherine E. Memory
Shalini Santhakumaran
Sabine N. van der Veer
Nicola Thomas
Rachel Gair
Alice C. Smith
Patient activation and its association with symptom burden and quality of life across the spectrum of chronic kidney disease stages in England
BMC Nephrology
Patient activation
Symptom burden
Quality of life
Chronic kidney disease
Patient reported outcomes
title Patient activation and its association with symptom burden and quality of life across the spectrum of chronic kidney disease stages in England
title_full Patient activation and its association with symptom burden and quality of life across the spectrum of chronic kidney disease stages in England
title_fullStr Patient activation and its association with symptom burden and quality of life across the spectrum of chronic kidney disease stages in England
title_full_unstemmed Patient activation and its association with symptom burden and quality of life across the spectrum of chronic kidney disease stages in England
title_short Patient activation and its association with symptom burden and quality of life across the spectrum of chronic kidney disease stages in England
title_sort patient activation and its association with symptom burden and quality of life across the spectrum of chronic kidney disease stages in england
topic Patient activation
Symptom burden
Quality of life
Chronic kidney disease
Patient reported outcomes
url https://doi.org/10.1186/s12882-022-02679-w
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