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.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.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).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. 

/pdf/patient-activation-and-its-association-with-symptom-burden-1v9ci7wm.pdf

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

The importance of patient activation (i.e., the knowledge, skills, and confidence one has in managing one’s own healthcare) in people with long-term conditions, including kidney disease, is growing. Enabling and empowering patients to take a more active role in their health and healthcare is the focus of person-centred care. Patient activation is recognised as a key construct of self-management, as to effectively self-manage a long-term condition, it is required to enable individuals to actively participate in treatment decisions, prevent complications, and manage risk factors. Identifying an individual’s level of activation can help guide and tailor care, and interventions aimed at increasing patient activation may improve patient engagement and health outcomes. In this review, we explore the concepts of patient activation and self-management, the relationship between patient activation and self-management, interventions aimed at improving these, and what these mean to people living with kidney disease.

/pdf/patient-activation-the-cornerstone-of-effective-self-259d7qno.pdf

Patient Activation: The Cornerstone of Effective Self-Management in Chronic Kidney Disease?

http://www.ajkd.org/article/S0272638621008271/pdf

Integrating Patient Activation Into Dialysis Care

Remote digital health interventions to enhance physical activity provide a potential solution to improve the sedentary behaviour, physical inactivity, and poor health-related quality of life that are typical of chronic conditions, particularly for people with chronic kidney disease. However, there is a need for high-quality evidence to support implementation in clinical practice. The Kidney BEAM trial evaluated the clinical effect of a 12-week physical activity digital health intervention on health-related quality of life.In a single-blind, randomised controlled trial conducted at 11 centres in the UK, adult participants (aged ≥18 years) with chronic kidney disease were recruited and randomly assigned (1:1) to the Kidney BEAM physical activity digital health intervention or a waiting list control group. Randomisation was performed with a web-based system, in randomly permuted blocks of six. Outcome assessors were masked to treatment allocation. The primary outcome was the difference in the Kidney Disease Quality of Life Short Form version 1.3 Mental Component Summary (KDQoL-SF1.3 MCS) between baseline and 12 weeks. The trial was powered to detect a clinically meaningful difference of 3 arbitrary units (AU) in KDQoL-SF1.3 MCS. Outcomes were analysed by an intention-to-treat approach using an analysis of covariance model, with baseline measures and age as covariates. The trial was registered with ClinicalTrials.gov, NCT04872933.Between May 6, 2021, and Oct 30, 2022, 1102 individuals were assessed for eligibility, of whom 340 participants were enrolled and randomly assigned to the Kidney BEAM intervention group (n=173) or the waiting list control group (n=167). 268 participants completed the trial (112 in the Kidney BEAM group and 156 in the waiting list control group). All 340 randomly assigned participants were included in the intention-to treat population. At 12 weeks, there was a significant improvement in KDQoL-SF.13 MCS score in the Kidney BEAM group (from mean 44·6 AU [SD 10·8] at baseline to 47·0 AU [10·6] at 12 weeks) compared with the waiting list control group (from 46·1 AU [10·5] to 45·0 AU [10·1]; between-group difference of 3·1 AU [95% CI 1·8-4·4]; p<0·0001).The Kidney BEAM physical activity platform is an efficacious digital health intervention to improve mental health-related quality of life in patients with chronic kidney disease. These findings could facilitate the incorporation of remote digital health interventions into clinical practice and offer a potential intervention worthy of investigation in other chronic conditions.Kidney Research UK. 

Evaluating the effect of a digital health intervention to enhance physical activity in people with chronic kidney disease (Kidney BEAM): a multicentre, randomised controlled trial in the UK.

Optimizing the use of patients' individual outcome information - Development and usability tests of a Chronic Kidney Disease dashboard

BACKGROUND AND OBJECTIVES Despite the increasing prioritization of the promotion of patient activation in nephrology, its applicability to people with CKD is not well established. Before the Patient Activation Measure is universally adopted for use in CKD, it is important to critically evaluate this measure. The aim of this study was to describe the psychometric properties of the Patient Activation Measure in CKD. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS A survey containing the 13-item Patient Activation Measure was completed by 942 patients with CKD, not treated with dialysis. Data quality was assessed by mean, item response, missing values, floor and ceiling effects, internal consistency (Cronbach's alpha and average interitem correlation), and item-rest correlations. Rasch modeling was used to assess item performance and scaling (item statistics, person and item reliability, rating scale diagnostics, factorial test of residuals, and differential item functioning). RESULTS The item response was high, with a small number of missing values (<1%). Floor effect was small (range 1%-5%), but the ceiling effect was above 15% for nine items (range 15%-38%). The Patient Activation Measure demonstrated good internal consistency overall (Cronbach α=0.925, and average interitem correlation 0.502). The difficulty of the Patient Activation Measure items ranged from -0.90 to 0.86. Differential item functioning was found for disease type (item 3) and age (item 12). The person separation index was 9.48 and item separation index was 3.21. CONCLUSIONS The 13-item Patient Activation Measure appears to be a suitably reliable and valid instrument for assessing patient activation in CKD. In the absence of a kidney-specific instrument, our results support the 13-item Patient Activation Measure as a promising measure to assess activation in those with CKD, although consideration for several items is warranted. The high ceiling effect may be a problem when using the 13-item Patient Activation Measure to measure changes over time.

Reliability and Validity of the Patient Activation Measure in Kidney Disease: Results of Rasch Analysis.

Background Patient activation describes the knowledge, skills and confidence in managing one's own health. Promoting patient activation is being prioritized to reduce costs and adverse outcomes such as cardiovascular disease (CVD). The increasing prevalence of chronic kidney disease (CKD) presents a need to understand the characteristics that influence patient activation and the effect on health outcomes. Design Cross-sectional study. Setting and participants Patients with non-dialysis CKD recruited from 14 sites (general nephrology and primary care) in England, UK. Outcome measures Patient activation was measured using the PAM-13. Demographic and health-related variables, self-reported symptom burden, health-related quality of life (HRQOL), socioeconomic status (SES), were assessed as determinants of patient activation. Major CVD risk factors included hypertension, dyslipidaemia, obesity and hyperkalaemia. Results 743 patients were included (eGFR: 32.3 (SD 17.1) mL/min/1.73 m2 , age 67.8 (SD 13.9) years, 68% male). The mean PAM score was 55.1 (SD 14.4)/100. Most patients (60%) had low activation. Those with low activation were older (P Conclusion This study showed that only a minority of CKD patients are activated for self-management. Our findings help better understand the level of activation in these patients, particularly older individuals with multimorbidity, and further the knowledge regarding the characteristics that influence activation. Patient or public contribution Patients were involved in the design of main study.

https://onlinelibrary.wiley.com/doi/pdf/10.1111/hex.13225

Determinants of patient activation and its association with cardiovascular disease risk in chronic kidney disease: A cross-sectional study.

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Reliability and Validity of the Patient Activation Measure in Kidney Disease: Results of Rasch Analysis.

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

Determinants of patient activation and its association with cardiovascular disease risk in chronic kidney disease: A cross-sectional study.