Significance Statement
The Patient Activation Measure (PAM) is a newly adopted metric by CMS to describe an individual’s knowledge, ability, skills, and confidence in self-managing chronic conditions. The extent to which the PAM is relevant, comprehensive, and associated with clinical, behavioral, and psychosocial outcomes in people with dialysis-dependent kidney failure is, as of yet, unclear. The data we present are the first estimates of association of patient activation with health literacy, mental health, and adherence in patients with dialysis-dependent kidney failure in the United States.
Keywords: patient self-assessment
Patients undergoing long-term dialysis need to have a high level of engagement with multiple domains of their care (treatment schedules, diet, medications, care transitions). The Patient Activation Measure (PAM) is a standardized instrument that assesses an individual’s knowledge, ability, skills, and confidence in self-managing chronic conditions.1 The PAM was developed and validated in populations without kidney diseases. Given the recent selection of an increase in PAM score as a quality metric by the Centers for Medicare and Medicate Services for value-based care models under the Advancing American Kidney Health Initiative, understanding how the PAM functions in this population is key for dialysis providers and patients. Although it is well understood that successful management of kidney failure requires a high level of patient engagement, the extent to which the PAM is relevant, comprehensive, and associated with clinical, behavioral, and psychosocial outcomes in people with dialysis-dependent kidney failure is, as of yet, unclear. Patients with kidney failure treated with hemodialysis have frequent contact with a multidisciplinary healthcare team and undergo laboratory testing every 2–4 weeks. This allows the care team frequent opportunity to both tailor the medical interventions and reinforce self-care behaviors, such that the importance of active patient engagement may be somewhat attenuated. Furthermore, the PAM may also not fully capture engagement in all domains needed to manage kidney failure. Finally, the patient’s ability to manage the high burden from disease and treatments is further challenged by a high prevalence of depression and anxiety (25%–30%),2 which may further complicate the PAM’s predictive abilities in this population. We sought to examine the associations between patient characteristics, mental health, and health literacy, along with measures of dialysis treatment adherence, with PAM scores.
We enrolled 175 participants with kidney failure being treated with in-center hemodialysis between August 2020 and January 2021 at three sites: two in New York City (The Rogosin Institute and New York University) and one in Seattle (University of Washington). We administered the PAM-13, a measure of health literacy (Brief Health Literacy Scale3), and measures of mental health (General Anxiety Disorder-74 for anxiety; Patient Health Questionnaire-25 for depression), and extracted dialysis adherence (average interdialytic weight gain over the last three sessions and number of dialysis sessions missed in the past 30 days) data from the participants’ medical charts.
The participants had a mean±SD age of 58±16 years, 61% were men, 68% were racial minorities, and their average dialysis vintage was 4.4±3.9 years. The distribution by levels of PAM and relationships to study variables are summarized in Table 1. Of the sample, 68% were categorized into levels 1–3, indicating suboptimal levels of patient activation. Associations of PAM with age did not reach significance (r=−0.13; P=0.08). Continuous PAM scores were significantly positively associated with health literacy (Brief Health Literacy Scale, r=0.31; P<0.001), and negatively associated with depression (Patient Health Questionnaire-2, r=−0.19; P=0.01) and anxiety (General Anxiety Disorder-7, r=−0.20; P=0.01). In a model that adjusted for age, sex, self-reported race, and dialysis vintage, a 1 SD difference in the health literacy measure (2.9) corresponded to a 5.3 (95% CI, 3.0 to 7.5) point difference in the PAM (P<0.001); a 1 SD difference in the depression measure (1.6) corresponded to a −3.6 (95% CI, −5.9 to −1.3) point difference in the PAM (P=0.002); and a 1 SD difference in the anxiety measure (5.1) corresponded to a −4.2 (95% CI, −6.6 to −1.8) point difference in the PAM (P=0.0007).
Table 1.
Sample demographic, psychologic, and adherence variables and by level of patient activation
| Variable | Overall (n=175) |
PAM Level 1: Disengaged and Overwhelmed (n=16) |
PAM Level 2: Becoming Aware but Still Struggling (n=48) |
PAM Level 3: Taking Action and Gaining Control (n=55) |
PAM Level 4: Maintaining Behaviors and Pushing Further (n=56) |
|---|---|---|---|---|---|
| Age (yr), mean±SD | 58±16 | 66±14 | 60±15 | 57±16 | 55±16 |
| Sex (M), n (%) | 107 (61) | 11 (69) | 30 (62) | 32 (58) | 34 (61) |
| Self-reported race, n (%) | |||||
| White | 74 (42) | 7 (44) | 19 (40) | 28 (51) | 20 (36) |
| Black | 52 (30) | 6 (38) | 10 (21) | 14 (25) | 22 (39) |
| Asian | 26 (15) | 2 (12) | 11 (23) | 7 (13) | 6 (11) |
| Other | 23 (13) | 1 (6) | 8 (17) | 6 (11) | 8 (14) |
| Self-reported ethnicity, n (%) | |||||
| Hispanic or Latino | 37 (21) | 3 (19) | 10 (21) | 10 (18) | 14 (25) |
| Dialysis vintage (yr), mean±SD | 4.4±3.9 | 3.7±4.0 | 4.6±3.7 | 3.9±2.9 | 4.8±4.9 |
| Site, n (%) | |||||
| University of Washington | 75 (43) | 8 (50) | 23 (48) | 21 (38) | 23 (41) |
| NYU | 50 (29) | 5 (31) | 10 (21) | 17 (31) | 18 (32) |
| Rogosin | 50 (29) | 3 (19) | 15 (31) | 17 (31) | 15 (27) |
| Health literacy (BHLS), mean±SD | 12.3±2.9 | 10.1±3.2 | 11.8±2.9 | 12.2±2.7 | 13.4±2.4 |
| Depression (PHQ-2), mean±SD | 1.1±1.6 | 1.8±2.3 | 1.1±1.6 | 1.2±1.6 | 0.8±1.4 |
| Anxiety (GAD-7), mean±SD | 4.0±5.1 | 6.3±5.8 | 4.2±4.7 | 4.3±5.4 | 2.9±4.8 |
| Interdialytic weight gain (kg), average of three sessions, mean±SD | 1.7±1.0 | 1.8±1.2 | 1.7±0.8 | 1.6±1.0 | 1.7±1.1 |
| Percent of patients missing at least one treatment session in the last 30 days | 23 | 12 | 25 | 27 | 20 |
M, male; NYU, New York University; BHLS, Brief Health Literacy Scale; PHQ-2, Patient Health Questionnaire-2; GAD-7, General Anxiety Disorder-7.
There was no significant relationship between PAM and measures of adherence to dialysis (P value for association with interdialytic weight gain and number of missed sessions, P=0.54 and P=0.39, respectively).
To our knowledge, these data are the first estimates of association of patient activation with health literacy, mental health, and adherence in patients with dialysis-dependent kidney failure in the United States. Notably, PAM scores were not significantly associated with adherence to dialysis treatments (interdialytic weight gain or number of missed dialysis treatments). Although we did not find significant associations with dialysis adherence measures, the rates of missed sessions overall was quite low, with all activation levels averaging less than one missed session in the past 30 days, and there may be aspects of self-activation that are valuable in and of themselves, such as persistence in seeking out relevant information to make informed healthcare choices.
In this cohort, we observed a strong relationship between lower PAM scores and lower levels health literacy and higher levels of depression and anxiety. These findings raise questions about the PAM’s predictive ability beyond demographic and known psychosocial predictors of negative health outcomes. Future research is needed to determine the effect of the length of observation period and to identify the other dialysis metrics that may be related to PAM scores. Furthermore, these results may inform how to best intervene on populations that score low on the PAM, because they may be disproportionally affected by low health literacy, depression, and anxiety. As the kidney care community attempts to incorporate the PAM into a meaningful metric, more information is needed to understand its utility, and its association to health outcomes.
Disclosures
D.M. Charytan reports having consultancy agreements with Allena Pharmaceuticals (for serving on a data safety monitoring board), Amgen, AstraZeneca, Eli Lilly/Boehringer Ingelheim, Fresenius, Gilead, GlaxoSmithKline, Janssen (for serving on a steering committee), PLC Medical (for serving on a clinical events committee), Novo Nordisk, Medtronic, and Merck; receiving research funding from Amgen, Bioporto (for clinical trial support), Gilead, Medtronic (for clinical trial support), and Novo Nordisk; serving as a scientific advisor for, or member of, CJASN; and receiving fees for serving as an expert witness in relation to proton pump inhibitors. D. Cukor reports receiving research funding from the National Institutes of Health. R. Mehrotra reports serving as Chair of the Nephrology Longitudinal Assessment Approval Committee of the American Board of Internal Medicine, as the Editor-in-Chief of CJASN, and on the editorial board for the Journal of Renal Nutrition and Peritoneal Dialysis International; receiving honoraria from Baxter Healthcare; and serving as a member of the board of trustees of Northwest Kidney Centers. L.R. Zelnick reports serving as a statistical editor for CJASN and having consultancy agreements with Veterans Medical Research Foundation. The remaining author has nothing to disclose.
Funding
None.
Footnotes
Published online ahead of print. Publication date available at www.jasn.org.
Data Sharing Statement
Insignia Health licenses the PAM survey for commercial and research use. For access information, visit https://www.insigniahealth.com/products/product-licensing.
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