Integrating Patient Activation Into Dialysis Care

Abstract

Patient activation, the measure of patients’ readiness and willingness to manage their own health care, is low among people receiving in-center hemodialysis, which is exacerbated because such centers are commonly set up for patients to passively receive care. In our pursuit of person-centered care and value-based medicine, enabling patients to take a more active role in their care can lead to healthy behaviors, with subsequent reductions in individual burden and costs to the health care system. To improve patient activation, we need to embrace a patient-first approach and combine it with ways to equip patients to thrive with self-management. This requires changes in the training of the health care team as well as changes in care delivery models, promoting interventions such as health coaching and peer mentoring, while leveraging technology to enable self-access to records, self-monitoring, and communication with providers. We also need health care policies that encourage a focus on patient-identified goals, including more attention to patient-reported outcomes. In this article, we review the current status of patient activation in dialysis patients, outline some of the available interventions, and propose steps to change the dynamics of the current system to move toward a more active role for patients in their care. Patient activation, the measure of patients’ readiness and willingness to manage their own health care, is low among people receiving in-center hemodialysis, which is exacerbated because such centers are commonly set up for patients to passively receive care. In our pursuit of person-centered care and value-based medicine, enabling patients to take a more active role in their care can lead to healthy behaviors, with subsequent reductions in individual burden and costs to the health care system. To improve patient activation, we need to embrace a patient-first approach and combine it with ways to equip patients to thrive with self-management. This requires changes in the training of the health care team as well as changes in care delivery models, promoting interventions such as health coaching and peer mentoring, while leveraging technology to enable self-access to records, self-monitoring, and communication with providers. We also need health care policies that encourage a focus on patient-identified goals, including more attention to patient-reported outcomes. In this article, we review the current status of patient activation in dialysis patients, outline some of the available interventions, and propose steps to change the dynamics of the current system to move toward a more active role for patients in their care. Delivering value-based care that improves efficiency by delivering better care with improved experience at controlled cost, the so-called triple aim, has gained traction in the dialysis community because of the escalating costs of dialysis care despite limited improvements in outcomes. The move from paternalistic medicine to person-centered care, in which the focus is on what patients and families need and want, has gained greater traction recently.1Morton R.L. Sellars M. From patient-centered to person-centered care for kidney diseases.Clin J Am Soc Nephrol. 2019; 14: 623-625Crossref PubMed Scopus (22) Google Scholar However, is the patient ready to take on this role? This is not just a matter of education2Hill B. Richardson B. Skouteris H. Do we know how to design effective health coaching interventions: a systematic review of the state of the literature.Am J Health Promot. 2015; 29: e158-e168Crossref PubMed Scopus (57) Google Scholar; as the saying goes, “When the student is ready, the teacher will appear.” When the patient is not ready, the teaching is a wasted effort and, in some instances, can be counterproductive, confusing, and disappointing. This implicates the importance of “patient activation,” which refers to how involved patients are in their care.3Hibbard J.H. Greene J. What the evidence shows about patient activation: better health outcomes and care experiences; fewer data on costs.Health Aff (Millwood). 2013; 32: 207-214Crossref PubMed Scopus (989) Google Scholar One needs knowledge to understand why and what to do, skill to manage the “how,” and confidence to be able to do it. Activated people demonstrate healthy behaviors such as exercise and healthy eating. They engage in healthy actions such as receiving immunizations, keeping their doctor appointments, and adhering to their medications. Activation is associated with healthier body mass index, glycated hemoglobin, and blood pressure. Consequently, activation is associated with fewer emergency room visits, fewer unplanned hospitalizations, and lower cost of care.4Greene J. Hibbard J.H. Sacks R. Overton V. Parrotta C.D. When patient activation levels change, health outcomes and costs change, too.Health Aff (Millwood). 2015; 34: 431-437Crossref PubMed Scopus (290) Google Scholar,5Lindsay A. Hibbard J.H. Boothroyd D.B. Glaseroff A. Asch S.M. Patient activation changes as a potential signal for changes in health care costs: cohort study of US High-cost patients.J Gen Intern Med. 2018; 33: 2106-2112Crossref PubMed Scopus (12) Google Scholar As activated people understand their condition and treatment and know how to navigate the system, it is not surprising that they report more provider satisfaction than less activated people.6Greene J. Hibbard J.H. Sacks R. Overton V. When seeing the same physician, highly activated patients have better care experiences than less activated patients.Health Aff (Millwood). 2013; 32: 1299-1305Crossref PubMed Scopus (67) Google Scholar Figure 1 illustrates a framework for how patient activation fits in strategies to improve patient care. The US Centers for Medicare & Medicaid Services have signaled their interest in patient activation by proposing a new quality metric that will apply to participants in the Kidney Care Choices payment model. Participating programs are required to collect patient activation measure (PAM) surveys in at least 50% of Kidney Care Choices patients, excluding patients with a documented diagnosis of dementia. The model also proposes repeating PAM surveys in all patients except those at the highest activation level (level 4; described in more detail later) in the initial survey. Nephrology practices will receive capitated payments based on changes in patient PAM scores.7Nair D. Cavanaugh K.L. Measuring patient activation as part of kidney disease policy: are we there yet?.J Am Soc Nephrol. 2020; 31: 1435-1443Crossref PubMed Scopus (17) Google Scholar Although patient activation has been studied extensively in many chronic diseases, little is known about it in kidney disease, and even less is known in hemodialysis (HD) care. As the culture of in-center HD care is unique, activation interventions that work in other populations may have limited transferability. In this perspective, we review what is known about patient activation in the literature, and we propose a pragmatic framework for how patient activation could be incorporated in care for HD patients. Patient activation is defined as the individual’s readiness, willingness, and ability to manage their own health and health care, and can be measured by the 13-item PAM survey known as PAM-13.8Lubetkin E.I. Lu W.H. Gold M.R. Levels and correlates of patient activation in health center settings: building strategies for improving health outcomes.J Health Care Poor Underserved. 2010; 21: 796-808Crossref PubMed Scopus (70) Google Scholar The survey is scored on a scale from 0 to 100, with higher scores denoting greater activation. Scores translate to 4 activation levels: level 1 (score ≤47.0; disengaged and overwhelmed), level 2 (47.1-55.1; becoming aware but still struggling, lacking the knowledge and confidence to take action), level 3 (55.2-72.4; beginning to take action), and level 4 (≥72.5; proactive and engaging in many recommended health behaviors).4Greene J. Hibbard J.H. Sacks R. Overton V. Parrotta C.D. When patient activation levels change, health outcomes and costs change, too.Health Aff (Millwood). 2015; 34: 431-437Crossref PubMed Scopus (290) Google Scholar The survey has been translated into more than 40 languages,9Hibbard J. [Comment on] The patient activation measure (PAM): a framework for developing patient engagement.https://participatorymedicine.org/epatients/2011/10/the-patient-activation-measure-pam-a-framework-for-developing-patient-engagement.html#comment-263236Google Scholar and it can be self-administered or assistance can be given to those who require it. People introducing the survey to patients need training to learn how to explain the purpose of the survey and how to complete it. PAM-13 has been validated extensively in different clinical settings and multiple patient populations,7Nair D. Cavanaugh K.L. Measuring patient activation as part of kidney disease policy: are we there yet?.J Am Soc Nephrol. 2020; 31: 1435-1443Crossref PubMed Scopus (17) Google Scholar,10Lightfoot C.J. Wilkinson T.J. Memory K.E. Palmer J. Smith A.C. Reliability and validity of the patient activation measure in kidney disease: results of Rasch analysis.Clin J Am Soc Nephrol. 2021; 16: 880-888Crossref PubMed Scopus (8) Google Scholar and was recently found to be reliable and valid in patients with chronic kidney disease (CKD) who are not receiving dialysis.10Lightfoot C.J. Wilkinson T.J. Memory K.E. Palmer J. Smith A.C. Reliability and validity of the patient activation measure in kidney disease: results of Rasch analysis.Clin J Am Soc Nephrol. 2021; 16: 880-888Crossref PubMed Scopus (8) Google Scholar It is yet to be validated in patients receiving maintenance dialysis. Patients with kidney disease have lower activation than patients with other chronic diseases, and activation is among those receiving in-center and treatment associated with patient activation in patients a Nephrol. 2018; PubMed Scopus Google M. and disease associated with activation for in patients with chronic disease, chronic and chronic disease: a survey 2015; PubMed Scopus Google in Kidney The Scholar One of the on activation in dialysis patients from the in Kidney in the in Kidney The Scholar Patient activation was measured in data from patients receiving in-center dialysis patients, patients with not receiving and Patients receiving in-center HD lower activation at levels 1 and than the patients dialysis those with and those with a kidney the survey patients the survey at least more that the improvements in patients who at levels 1 and in Kidney The Scholar have been from other of the In a study from the PAM for HD patients was and treatment associated with patient activation in patients a Nephrol. 2018; PubMed Scopus Google Scholar From a study that activation in patients with dialysis patients patients with kidney This study not report in the of dialysis patients, in the low activation 1 and associated with patient activation in with and chronic kidney disease: a PubMed Scopus Google Scholar The study we able to from the HD patients among a of patients with This study that patients with more kidney disease lower M. B. Patient activation with and confidence in chronic kidney PubMed Scopus Google Scholar US survey of HD patients that in the low activation Patient activation in hemodialysis patients in the at Kidney 2020; Scholar the to more about activation and interventions in dialysis patients. The culture of HD centers is because there is other clinical in which patients with the same health care such a of M. of among hemodialysis a J. Google Scholar and people receiving dialysis at in-center HD are for little of the clinical and is a for chronic kidney disease J. 16: Google Scholar The culture of and dialysis treatment is by dialysis and the receiving Patient care hemodialysis and J. Google Scholar It is for the or to do for the receiving dialysis than the to and This results in limited patient in clinical care and can the for of coaching and In the to person-centered care, the dialysis community needs to have a for engaging and enabling patients to be in of their own health care. We of potential However, individual will not be to R. patient-reported into care for people with chronic kidney Kidney J. PubMed Scopus Google Scholar To a and we propose a model of care that people receiving their health care dialysis and R. patient-reported into care for people with chronic kidney Kidney J. PubMed Scopus Google M. hemodialysis patient in J Am Soc Nephrol. 2019; 14: PubMed Scopus Google Scholar 2 and of patients’ activation status can and Patients with low activation are less to of or more in their are less to and are less to know what to do they to do about with and is for this of J.H. Greene J. Sacks Overton V. Parrotta health patients who are more to be of care and those more to a new chronic PubMed Scopus Google Scholar Health or the of and to health can changes and to treatment to better health B. Richardson B. Skouteris H. Do we know how to design effective health coaching interventions: a systematic review of the state of the literature.Am J Health Promot. 2015; 29: e158-e168Crossref PubMed Scopus (57) Google of patient activation on chronic a 2020; PubMed Scopus Google H. the in health coaching systematic review of health coaching 2020; 14: PubMed Scopus Google Scholar This is from which is delivery of health with for the own or to H. the in health coaching systematic review of health coaching 2020; 14: PubMed Scopus Google Scholar The on and that to the patient to change, on to a J PubMed Scopus Google Scholar to encourage people to take actions and J.H. Greene J. What the evidence shows about patient activation: better health outcomes and care experiences; fewer data on costs.Health Aff (Millwood). 2013; 32: 207-214Crossref PubMed Scopus (989) Google Scholar which in to take more and more their activation. and programs to PAM than and can to more to a role in or health of the care with coaching for activation and patient J Google Scholar People with activation are active of and our role is to to the and to their they the other of the people with low activation can be and J. Hibbard J.H. Sacks R. Overton V. Parrotta C.D. When patient activation levels change, health outcomes and costs change, too.Health Aff (Millwood). 2015; 34: 431-437Crossref PubMed Scopus (290) Google Scholar They are to on a of from multiple providers. They from on of As patients in goals, they confidence and take on more M. hemodialysis patient in J Am Soc Nephrol. 2019; 14: PubMed Scopus Google Scholar and their activation level As a can be to PAM levels to improve in to Patient patient activation measure surveys to a for with lower activation the on such as with on and to and the with dialysis to with higher activation for less coaching patients can by their to new more and can into more such as the with and of approach by a for a patient with to dialysis with understand the and described how the patient to on the and and it not to with described not to to but also that as a for not with of a to dialysis the do This to in to dialysis more and our role is to the patient to a that person-centered care, the for all be a focus on what is for the patient and patient activation measure surveys to a for with lower activation the on such as with on and to and the with dialysis to with higher activation for less coaching patients can by their to new more and can into more such as the with and health of approach by a for a patient with to dialysis with understand the and described how the patient to on the and and it not to with described not to to but also that as a for not with of a to dialysis the do This to in to dialysis more and our role is to the patient to a that person-centered care, the for all be a focus on what is for the patient and is a commonly health coaching B. Richardson B. Skouteris H. Do we know how to design effective health coaching interventions: a systematic review of the state of the literature.Am J Health Promot. 2015; 29: e158-e168Crossref PubMed Scopus (57) Google Scholar is to people toward The the readiness to change, the to a of and of and and building confidence a is of in patients on a study J. Google People for Scholar has been to dialysis M. in dialysis study J. Google Scholar of dialysis M. in dialysis study J. Google Scholar and M. in dialysis study J. Google The of on to treatment and quality of in chronic hemodialysis a controlled 2021; PubMed Scopus Google Scholar but has limited on M. in dialysis study J. Google The of on to treatment and quality of in chronic hemodialysis a controlled 2021; PubMed Scopus Google of in patients on a study J. Google Scholar in 1 illustrates how the of by a in the care of a patient who been to dialysis is limited experience about programs in dialysis care. in the of for of patients by 2 who have a chronic The patients in their own to that a chronic disease can improve health status while a PubMed Scopus Google Scholar In a study patients HD who in the in behaviors, health health care and B. The chronic disease study in patients 2015; 29: Google Scholar The of such a in the dialysis by the that 2 of the patients 1 and the participants 1 of the of the of the to improve in chronic disease, a from improvements in quality of healthy behaviors, and with T.J. of health health behaviors, and health care outcomes of the chronic disease 2013; PubMed Scopus Google Scholar more of the of patient activation interventions, including and other interventions, and but of patient activation on chronic a 2020; PubMed Scopus Google Scholar a different HD patients in to receive care or with 4 a M. J.H. H. a to improve and clinical in patients receiving J Kidney 2018; PubMed Scopus Google Scholar on to and and and involved peer and or a training changes in and but the that the be in given low It is to that a of patients to with the of interest or and a of as or in the study a of and It is not what the of such have on those less at the are patients with low activation, who may be more to and in the but who may also more from the In a study in the are the of of person-centered care to HD J. and design for a quality to scale up care for patients on based Nephrol. PubMed Scopus Google Scholar The health care team for patients and their in their own defined for this from such as blood and to more other of the treatment up and the dialysis Patients with low levels of activation to engage with and this to confidence and As patients greater and a to move to dialysis. was that hemodialysis care is a but a M. hemodialysis patient in J Am Soc Nephrol. 2019; 14: PubMed Scopus Google Scholar requires a in the of and requires from all of the care This could such as care A. B. dialysis care a new approach to dialysis and patient 2018; 31: PubMed Scopus (22) Google Scholar HD R. M. systematic approach to promoting hemodialysis kidney 2020; Google Scholar and dialysis a in the a and J Am Soc Nephrol. 2020; PubMed Scopus Google Scholar that can peer mentoring, and other training The role of the health care team needs to from with limited patient toward the of and patients to active role in their J. and design for a quality to scale up care for patients on based Nephrol. PubMed Scopus Google to a study of patient and 2013; PubMed Scopus Google Scholar may a team to be the patient activation who the and of other team and of the It is to have and with of the activation status by those who the with the patients. and may be to but are by patient and less with the patients than and the of PubMed Scopus Google Scholar all the of who among the care team the of activation can be at a change that patients, health care and is to and to a study of patient and 2013; PubMed Scopus Google J. D. of the framework for in change and PubMed Scopus Google Scholar of and such as the by D. J. and Scholar with of all needs to be The M. hemodialysis patient in J Am Soc Nephrol. 2019; 14: PubMed Scopus Google Scholar a of with multiple team at dialysis patient by a training a and other to a patient a patient was to their J. and design for a quality to scale up care for patients on based Nephrol. PubMed Scopus Google Scholar patients are a who can a activation to the of of a peer to improve disease practices and among with of the to 2019; PubMed Scopus Google Scholar can patients their experiences and the of J. M. for in-center a patient-centered quality J. Google J. J. B. peer in improving the patient 2018; 31: PubMed Scopus Google J. Smith kidney patients’ experiences of receiving individual peer PubMed Scopus Google Scholar Although the evidence is limited in dialysis peer has to patient activation and in other chronic of a peer to improve disease practices and among with of the to 2019; PubMed Scopus Google for with 2013; PubMed Scopus Google A. M. with health community and changes in patient activation and health care 2019; PubMed Scopus Google M. of a for with chronic improves health PubMed Scopus Google D. A. of patient activation and in a for with PubMed Scopus (8) Google Scholar Measuring patient-reported outcomes is to person-centered care, as they measure burden and quality of from a perspective, patients and improve patient and enable patient A. on patient-reported outcomes can and PubMed Scopus (57) Google D. for with kidney disease: current and for into patient-centered kidney J Kidney 2019; PubMed Scopus Google R. controlled for the of outcomes in care a study Health 2020; PubMed Scopus Google Scholar culture of care toward a model in which a patient has more and knowledge about their health care to of in patient care in the of dialysis D. for with kidney disease: current and for into patient-centered kidney J Kidney 2019; PubMed Scopus Google R. controlled for the of outcomes in care a study Health 2020; PubMed Scopus Google Scholar are to the of in dialysis R. controlled for the of outcomes in care a study Health 2020; PubMed Scopus Google A. and of data and among patients receiving in the for a study in 2020; PubMed Scopus Google Scholar The of in the care of HD patients and the to and is in with A. and of data and among patients receiving in the for a study in 2020; PubMed Scopus Google Scholar The of Patient in study is the of to treatment for and patients in HD in 3 kidney care programs in R. controlled for the of outcomes in care a study Health 2020; PubMed Scopus Google Scholar will on how to in dialysis care to patients with their own health care the of health in dialysis patients, can be to patient health readiness of people receiving in-center hemodialysis and J Am Soc Nephrol. 2020; 16: PubMed Scopus (8) Google health in the is the with J Am Soc Nephrol. 2020; 16: PubMed Scopus Google Scholar Patient multiple that can including patients to their own and clinical appointments, and with providers. improve and the of to the of patient for the care of patients with Health PubMed Google Scholar which in activation and self-management. Patient have been associated with M. J. B. A. J. of health with on to a PubMed Scopus Google Scholar health care of results to patients patient and of PubMed Scopus Google Scholar and to kidney patient and to in patients on Am 2020; PubMed Scopus Google Scholar The of patient activation in clinical has a potential to improve patient care, but there are many that require to this D. Cavanaugh K.L. Measuring patient activation as part of kidney disease policy: are we there yet?.J Am Soc Nephrol. 2020; 31: 1435-1443Crossref PubMed Scopus (17) Google H. the in health coaching systematic review of health coaching 2020; 14: PubMed Scopus Google Scholar In we to of patient activation in the care of dialysis to Patient Activation in in different in-center and among different such as and patient activation to outcomes including quality of to dialysis and and can patient activation be of interventions activation are the effective activation delivery to of and of the are the effective activation interventions peer mentoring, are the strategies to patient activation in of dialysis in different in-center and among different such as and patient activation to outcomes including quality of to dialysis and and can patient activation be of interventions activation are the effective activation delivery to of and of the are the effective activation interventions peer mentoring, are the strategies to patient activation in of dialysis Although can require and are with of care by people receiving in and costs involved in kidney care need to that evidence of the of patient activation on outcomes and cost of care will require such we at least on patient outcomes such as changes to quality of improved and satisfaction with care, and patients are the actions that will improve their It is also to that of the programs that to improve patient activation is that patients with low activation, more to from are also less to for the same low activation is associated with less J.H. are in their health and health care, and why it Google Scholar to and patients are of Activation is becoming a in patient-centered care and in our pursuit of value-based care. work is to the and interventions to this in and care delivery that to activation need to the of including patients with low activation, the of a that the and status of dialysis patients, and the on patients and We are with a of from a paternalistic delivery of care, and to care that is by individual patient-identified of Patient Activation to the of of a Patient to on disease of and of fits delivery of a with little or of or to individual to the level of patient by patient-identified and by and disease to patient activation activation patients require more in delivering in person-centered to the patient and to do for the patient of engaging the to the patient and more to the patient not and not care communication and of care care team and may with patient value-based care patient-reported experience patient-reported in a new

Topics & Concepts