Research Day: patient activation is needed

Have you been activated as a patient? As I get older the social sciences become more important. #MSBlog #MSResearch

“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.”

“The process of getting involved with the self-management of your disease is called patient-activation. You can assess how activated you are by answering the following question in the short PAM (patient activation measure). It is clear from other fields that activated patients have better outcomes; I am sure this will apply to MS as well. This field of patient activation was triggered by a landmark paper in 2004 (below); the PAM was subsequently shortened and translated into many different languages.”

13-item PAM
  1. When all is said and done, I am the person who is responsible for managing my MS
  2. Taking an active role in my own health care is the most important factor in determining my health and ability to function
  3. I am confident that I can take actions that will help prevent or minimize some symptoms or problems associated with my MS
  4. I know what each of my prescribed medications
  5. I am confident that I can tell when I need to go get medical care and when I can handle a health problem myself 
  6. I am confident I can tell my healthcare provider concerns I have even when he or she does not ask 
  7. I am confident that I can follow through on medical treatments I need to do at home 
  8. I understand the nature and causes of my MS
  9. I know the different medical treatment options available for my MS
  10. I have been able to maintain the lifestyle changes for my health that I have made
  11. I know how to prevent further problems with my MS
  12. I am confident I can figure out solutions when new situations or problems arise with my MS
  13. I am confident that I can maintain lifestyle changes like diet and exercise even during times of stress
“A concluding word of caution; in healthcare knowledge is usually not enough to change behaviour you typically have to change the environment. Changing the environment we work in, particularly in the NHS, is like pushing a boulder-up hill. However hard it is, it is is no excuse to not try.”

Hibbard et al. Development of the Patient Activation Measure (PAM): conceptualizing and measuring activation inpatients and consumers. Health Serv Res. 2004 Aug;39(4 Pt 1):1005-26.

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.

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.


  • It is difficult to answer yes to all of these questions although I consider myself rather well informed, partly due to this blog. Especially the last ones.
    It was nice to see you again anyway.
    Do take care.
    The owl is a symbom for wisdom..
    //Swedish Sara

  • Prof G,

    Is there a risk that this can go to far? Over the last few years two members of my family have need treatment for different types of cancer. They both went to their GP, then were referred to a specialist, and then received excellent treatment (drugs and support). Neither visited a blog, neither read much about their conditions. They trusted the expertise of the specialist (oncologist). The oncolologist was the expert and they relied on his/her advice on the best treatment. I can't see why neuros, especially those who specialise in MS can't do the same. Pushing the research back to patients and expecting them to make demands (when they are adjusting to a grim disease) looks odd to me. The specialist has the training, experience and is paid to do the job. Preservation of the CNS must be the key driver for treatments – would any neuro really not support this aim? Pushing the research, drive etc. back to the patient says to me that something is wrong with neurology. I take my complicated car to the specialist garage (main dealer). The idea that I would read up on all the specifications etc. and then direct the specialist mechanic / engineer is proposterous. I'm not an expert, just want my car fixed, and I'm paying someone to do it.

    • Unfortunately, we live in the UK with one of the lowest treatment rates in the world and with most neurologists reluctant to treat actively. I agree with Prof G it is time for us MSers to set the agenda; we need to take action.

    • Re: "They trusted the expertise of the specialist (oncologist)."

      I am not in a position to discuss cancer treatments, but you should be aware that if you do develop cancer in the UK the chances are you will have a worse outcome than if you live in most other European countries. You may find the following article of interest:

      I suspect the same applies for MS. Therapeutic nihilism is alive and kicking in the UK; I could quote 5 or 6 examples of this from speaking to MSers on Saturday. It is up to the individual to do what they feel is right; you can be a passive recipient of healthcare or become activated and improve your outlook. The choice is yours.

    • The thirteen points above probably apply to cancer too. Patients to need to take responsibility for their own health. Somewhere in this blog I've read that patients still get MS attacks on the DMTs, maybe the neurologists don't believe the quality of life on them is not worth it. Are patients relying too much on medication. Why don't we treat MS in a similar way to cancer? I trust my neurologist as I would my doctors treating me for cancer. Would I ask for chemotherapy if the doctors suggest there isn't one for me? I don't think so.

    • May be you should ask if your neurologist says no. The MS Society have highlighted how few of us are being treated in the UK and running the Treat me Right campaign to overcome their reluctance to prescribe DMTs.

    • I trust my neurologist and believe he would not prescribe anything that is unsuitable for me. My point was why would I trust my neurologist less than I would an cancer specialist.
      Sorry if I didn't articulate this properly.

  • Prof Gavin Giovannoni, I just want to say we, myself and my mum, both enjoyed the MS Day on Saturday. It was very informative as is this site. Becoming familiar with how to find the wealth of information avaliable I am certainly becoming "more activated".

By Prof G



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