“As always the MS Research Day was very enjoyable. Although I came home exhausted and hoarse I felt inspired. I spent most of the day sitting at the Digesting Science table answering questions about MS and its management and giving advice to MSers. It is clear to me that most MSers who attended the meeting are not satisfied with being fobbed off by their MSologist and Nurse when they ask pertinent questions about their care. For example, numerous MSers who on 1st-line injectable DMTs are having relapses and are not being offered escalation therapies. Why? Some are told that their relapses are too mild and hence don’t warrant a change in treatment. This advice is clearly at odds with the published data. MRI monitoring for a treatment response, or non-response, is also very patchy across units in London and outside. What can you do about this? I suggest you ask whether your MS is active? If your MSologist says your disease is inactive asked him or her how can they be sure without at least doing an gadolinium enhanced-MRI? You may still get fobbed off, but at least by asking the question you stimulate them to consider the question.”
“Become activated, become an agent for change.”
- When all is said and done, I am the person who is responsible for managing my MS
- Taking an active role in my own health care is the most important factor in determining my health and ability to function
- I am confident that I can take actions that will help prevent or minimize some symptoms or problems associated with my MS
- I know what each of my prescribed medications
- I am confident that I can tell when I need to go get medical care and when I can handle a health problem myself
- I am confident I can tell my healthcare provider concerns I have even when he or she does not ask
- I am confident that I can follow through on medical treatments I need to do at home
- I understand the nature and causes of my MS
- I know the different medical treatment options available for my MS
- I have been able to maintain the lifestyle changes for my health that I have made
- I know how to prevent further problems with my MS
- I am confident I can figure out solutions when new situations or problems arise with my MS
- I am confident that I can maintain lifestyle changes like diet and exercise even during times of stress
BACKGROUND: Controlling costs and achieving health care quality improvements require the participation of activated and informed consumers and patients.
OBJECTIVES: We describe a process for conceptualizing and operationalizing what it means to be “activated” and delineate the process we used to develop a measure for assessing “activation,” and the psychometric properties of that measure.
METHODS: We used the convergence of the findings from a national expert consensus panel and patient focus groups to define the concept and identify the domains of activation. These domains were operationalized by constructing a large item pool. Items were pilot-tested and initial psychometric analysis performed using Rasch methodology. The third stage refined and extended the measure. The fourth stage used a national probability sample to assess the measure’s psychometric performance overall and within different subpopulations.
STUDY SAMPLE: Convenience samples of patients with and without chronic illness, and a national probability sample (N=1,515) are included at different stages in the research.
CONCLUSIONS: The Patient Activation Measure is a valid, highly reliable, unidimensional, probabilistic Guttman-like scale that reflects a developmental model of activation. Activation appears to involve four stages: (1) believing the patient role is important, (2) having the confidence and knowledge necessary to take action, (3) actually taking action to maintain and improve one’s health, and (4) staying the course even under stress. The measure has good psychometric properties indicating that it can be used at the individual patient level to tailor intervention and assess changes.
Hibbard et al. Development and testing of a short form of the patient activation measure. Health Serv Res. 2005 Dec;40(6 Pt 1):1918-30.
OBJECTIVE: The Patient Activation Measure (PAM) is a 22-item measure that assesses patient knowledge, skill, and confidence for self-management. The measure was developed using Rasch analyses and is an interval level, unidimensional, Guttman-like measure. The current analysis is aimed at reducing the number of items in the measure while maintaining adequate precision.
STUDY METHODS: We relied on an iterative use of Rasch analysis to identify items that could be eliminated without loss of significant precision and reliability. With each item deletion, the item scale locations were recalibrated and the person reliability evaluated to check if and how much of a decline in precision of measurement resulted from the deletion of the item.
DATA SOURCES: The data used in the analysis were the same data used in the development of the original 22-item measure. These data were collected in 2003 via a telephone survey of 1,515 randomly selected adults. Principal Findings. The analysis yielded a 13-itemmeasure that has psychometric properties similar to the original 22-item version. The scores for the 13-item measure range in value from 38.6 to 53.0 (on a theoretical 0-100 point scale). The range of values is essentially unchanged from the original 22-item version. Subgroup analysis suggests that there is a slight loss of precision with some subgroups.
CONCLUSIONS: The results of the analysis indicate that the shortened 13-item version is both reliable and valid.