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Does patient activation level affect the cancer patient journey?

https://doi.org/10.1016/j.pec.2017.03.019Get rights and content

Highlights

  • Patient activation level is associated with cancer patient experiences from diagnosis to survivorship.

  • Less activated cancer patients are more vulnerable to poor experiences and outcomes.

  • There is value in assessing patient activation when cancer is diagnosed.

Abstract

Objectives

We assess how patient activation is associated with behaviors and experiences of people with cancer, including: understanding risks; making treatment decisions; communicating with providers; coping with symptoms; and adhering to regimens.

Methods

The study utilizes survey data from six surveys each including 500 cancer survivors. Multivariate analyses are presented.

Results

Higher activated patients are more than 9 times more likely to feel their treatment plans reflect their values, 4.5 times more likely to cope with side effects, and almost 3.3 times more likely to initiate a healthier diet after their diagnosis, than are less activated patients. Less activated patients are less likely understand their diagnosis, to follow treatment regimens, and to be satisfied with their care.

Conclusions

The findings show that all along the care continuum, patient activation is associated with differences in experiences.

Practice implications

The findings point to the value of assessing patients’ activation levels at the beginning of their cancer experience.

Introduction

Patient activation is defined as the individual's knowledge, skill, and confidence for managing their own health [1], [2]. There is growing evidence about the importance of patient activation in supporting positive outcomes among chronic disease patients [3], [4]. More activated patients are more likely to adhere to treatment regimens, to monitor conditions, to obtain recommended care, and to have better clinical outcomes [5], [6], [7], [8], [9]. While this evidence comes from a variety of settings and within patient populations, there are only a few studies that focus on patient activation in cancer patients. The studies that do tend to examine only one type of cancer [10], [11], [12], [13]. Studies that take a broader view show that patient activation is linked with attitudes toward cancer, satisfaction with care, and the likelihood of getting a cancer screening [14], [15], [16].

As more patients survive cancer, they need to self-manage on a long term basis. Cancer as a chronic illness places new demands on patients to manage their own care, often with minimal clinical advice or supervision. Chronic cancer care is often delivered in brief ambulatory clinical encounters, and patients and their families increasingly take on responsibility for day-to-day management of their illness [17]. This includes management of symptoms, adhering to complex treatment regimens, as well as adopting new behaviors to reduce the risk of recurrence of their disease.

Using survey data from cancer patients, we assess how patient activation level is associated with the adoption of behaviors, symptom management, communication with providers, and satisfaction related to cancer care across a broad range of cancers.

Section snippets

Design

The study utilizes survey data collected by CancerCare®, who fielded six different on-line surveys among cancer patients [18]. Each survey contained no more than 41 questions including the patient activation measure (PAM) and demographics. To minimize respondent burden, respondents were randomly assigned to receive one of the surveys. Each survey focused on experiences and patient behaviors relating to different phases of the cancer experience.

Study sample

For each survey, cancer patients were recruited

Results

Table 1 shows the characteristics of the study population. Over half the study sample is female (57%), and sixty-eight percent are 55 years or older. Thirty-two percent of the study participants have incomes lower than $50,000. Fifty-two percent have less than a college education, and 68% are white. The study population is evenly distributed across the regions of the country, and 39% had their cancer diagnosed within the two years before the survey.

The multivariate analysis results (Table 2),

Discussion

All long the continuum of care, more activated patients are likely to be better informed and more proactive about managing their condition. They are more likely to understand their diagnosis, feel sufficiently informed about their treatment plan and believe that these plans reflect their values. Higher activated patients are more likely to report being able to effectively manage symptoms/side effects.

The findings are similar to what has been found in assessing patient activation within other

Funding

None.

Conflicts of interest

Judith Hibbard and Eldon Mahoney are consultants to and equity stakeholders in Insignia Health. Ellen Soney has no potential conflicts of interest to report.

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