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

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.

A qualitative exploration of the facilitators and barriers to self-management in kidney transplant recipients.

BACKGROUND: Understanding the behaviours that facilitate or impede one's ability to self-manage is important to improve health-related outcomes in kidney transplant recipients (KTRs). Previous studies exploring the self-management experiences of KTRs have focused on specific tasks (e.g., medication adherence), age groups (e.g., adolescent or older recipients), or have been conducted outside of the UK where transferability of findings is unknown. Our study aimed to explore the perceptions and experiences of self-management in UK KTRs to identify facilitators and barriers associated with self-management tasks. METHODS: Semi-structured interviews were conducted with eleven KTRs. Topics explored included experiences of self-management tasks (diet, exercise, medications, stress management), perceived healthcare role, and future interventional approaches. Thematic analysis was used to identify and report themes. RESULTS: Eight themes were identified which were mapped onto the three self-management tasks described by Corbin and Strauss: medical, role and emotional management. Perceived facilitators to self-management were: gathering health-related knowledge, building relationships with healthcare professionals, creating routines within daily life, setting goals and identifying motivators, establishing support networks, and support from family and friends. Complexity of required treatment and adjusting to a new health status were perceived barriers to self-management. CONCLUSIONS: Participants described the importance of collaborative consultations and continuity of care. Tailored interventions should identify individualised goals and motivators for participating in self-management. Education on effective strategies to manage symptoms and comorbidities could help alleviate KTRs' perceived treatment burden. Family and peer support could emotionally support KTRs; however, managing the emotional burden of transplantation warrants more attention.

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

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.