improving health outcomes across england by providing improvement and change expertise

Improving health outcomes across England by providing improvement and change expertise

How to Measure Patient Activation

Measuring Patient Activation In Patients with End-Stage Kidney Disease

Michelle Barclay

What is Patient Activation?

Patient Activation is the skills, knowledge, and motivation of individual patients to participate as

effective members of the care team1

Research shows patients who are more activated: Engage more in self-care and preventative behaviours and adherence

to medication Significantly lower rates of visits to doctor, ER and hospital stays Engage more in healthy behaviours Engage more in disease specific self-management behaviours Engage in more health information seeking behaviours Stronger patient-doctor relationships

1(Hibbard et al 2004)

Why should we interested in Patient Activation?

• 15 million people in England live with some kind of Long Term Condition

• Need to promote greater health to avoid developing LTC• Promotion of self-management for those with LTC is

important to improving patient outcomes and quality of life and reducing the impact of LTC on healthcare providers

• Patient Activation can be used to identify people who may benefit from specific, targeted interventions

• Can be used to assess the effectiveness of interventions at population level

Patient Activation Measure

• Patient Activation Measure (PAM) is a well validated tool aimed at measuring the level of patient activation engagement in their healthcare

• The 13 item PAM questionnaire requires patients to answer 13 questions with one of 5 possible responses:• Strongly agree• Agree• Disagree• Strongly disagree• Not applicable

• The PAM produces activation scores ranging from 0 to 100, which can be used to categorise respondents according to their ‘activation‘ level into one of the Four Levels

Patient Activation Measure, 13-Item Below are some statements that people sometimes make when they talk about their health. Please indicate how much you agree or disagree with each statement as it applies to you personally by circling your answer. Your answers should be what is true for you and not just what you think the doctor wants you to say. If the statement does not apply to you, circle N/A.

1. When all is said and done, I am the person who is responsible for taking care of my health

Disagree Strongly

Disagree Agree Agree Strongly

N/A

2. Taking an active role in my own health care is the most important thing that affects my health

Disagree Strongly


N/A

3. I am confident I can help prevent or reduce problems associated with my health

Disagree Strongly


N/A

4. I know what each of my prescribed medications do

Disagree Strongly


N/A

5. I am confident that I can tell whether I need to go to the doctor or whether I can take care of a health problem myself.

Disagree Strongly


N/A

6. I am confident that I can tell a doctor concerns I have even when he or she does not ask.

Disagree Strongly


N/A

7. I am confident that I can follow through on medical treatments I may need to do at home

Disagree Strongly


N/A

8. I understand my health problems and what causes them.

Disagree Strongly


N/A

9. I know what treatments are available for my health problems

Disagree Strongly


N/A

10. I have been able to maintain (keep up with) lifestyle changes, like eating right or exercising

Disagree Strongly


N/A

11. I know how to prevent problems with my health Disagree Strongly


N/A

12. I am confident I can figure out solutions when new problems arise with my health.

Disagree Strongly


N/A

13. I am confident that I can maintain lifestyle changes, like eating right and exercising, even during times of stress.

Disagree Strongly


N/A

Definition of PAM scores

Activation Level PAM Score (max 100) Definition

Level 1 45.2 or lower Individual not prepared to take an active role

Level 2 47.4 to 52.9 Believes they have an important role but lacks the confidence and/or knowledge

Level 3 56.4 to 66.0 Beginning to take action but may still lack confidence

Level 4 68.5 or above Individual has adopted many self-management behaviours (may still not be able to maintain actions over time or during stress

http://www.thekidneycenter.org/gentle_dialysis_center

Data collected from kidney patients:

• Completed PAM data and background questionnaires were obtained from 296 patients across the 12 kidney units between February and May 2012; 256 of which were eligible for analysis.

– PAM data:• Patient activation level (1-4)• Patient activation score (more useful in follow-up)• Answers / trends to individual PAM questions– Patient background data:• Age• Sex• Ethnic group• Time since diagnosis• Current modality• Previous modality• Care plan – type & how long• Letters about care and who from• (willing to be contacted for interview)

Patient Activation Measure, 13-Item Below are some statements that people sometimes make when they talk about their health. Please indicate how much you agree or disagree with each statement as it applies to you personally by circling your answer. Your answers should be what is true for you and not just what you think the doctor wants you to say. If the statement does not apply to you, circle N/A.

1. When all is said and done, I am the person who is responsible for taking care of my health

Disagree Strongly


N/A

2. Taking an active role in my own health care is the most important thing that affects my health

Disagree Strongly


N/A

3. I am confident I can help prevent or reduce problems associated with my health

Disagree Strongly


N/A

4. I know what each of my prescribed medications do

Disagree Strongly


N/A

5. I am confident that I can tell whether I need to go to the doctor or whether I can take care of a health problem myself.

Disagree Strongly


N/A

6. I am confident that I can tell a doctor concerns I have even when he or she does not ask.

Disagree Strongly


N/A

7. I am confident that I can follow through on medical treatments I may need to do at home

Disagree Strongly


N/A

8. I understand my health problems and what causes them.

Disagree Strongly


N/A

9. I know what treatments are available for my health problems

Disagree Strongly


N/A

10. I have been able to maintain (keep up with) lifestyle changes, like eating right or exercising

Disagree Strongly


N/A

11. I know how to prevent problems with my health Disagree Strongly


N/A

12. I am confident I can figure out solutions when new problems arise with my health.

Disagree Strongly


N/A

13. I am confident that I can maintain lifestyle changes, like eating right and exercising, even during times of stress.

Disagree Strongly


N/A

A summary of the PAM levels obtained from the individual units is shown below.

PAM Level of Kidney Patients Relative to Current Treatment Modality (p=0.014)

Relationship between PAM level and Age (p = 0.019)

Regression analysis shows age and current modality to be independently linked to PAM level

NHS Kidney Care PAM13 Data vs. UK & US PAM22 Data for People with Long Term Conditions*

0

5

10

15

20

25

30

35

40

45

Level 1 Level 2 Level 3 Level 4

Patient Activation Level

% o

f pati

ents

UK (n=2,879)

US (n=1,469)

England end-stage kidney disease(n=263)

*Ellins & Coulter (2005)

Comparison of Average PAM Scores for People with End-Stage Kidney Disease in England Compared to People with Long Term Conditions in the UK:

• Average PAM22 Score for people with long term conditions in UK = 59.43* (correlates to a mid level 3)

• Average PAM13 Score for people with end-stage kidney disease in England = 54.39 (correlates to a borderline level 2 / level 3)

Age distribution of NHS Kidney Care PAM 13 respondents compared to UK PAM22 for LTC*

0

5

10

15

20

25

30

35

45-54 55-64 65-74 75-84 85+

Age Group

% o

f Pati

ents

NHS KC PAM

UK PAM22

Time 2 data: 8 – 12 months Follow up

Eleven units returned a total of 131 completed PAM surveys, of which 72 surveys matched patients that had responded in time 1. All patients in time 2 responded that they had a care plan.

- 29 patients showed an increased in PAM level- 16 had a decrease- 27 patients showed no change in their PAM level

% PEOPLE AT EACH ACTIVATION LEVEL FOR PEOPLE WITH ALL LTC IN THE UK AND US (PAM) COMPARE TO PEOPLE WITH END STAGE KIDNEY DISEASE IN ENGLAND – ALL TIME 1; TIME 1

AND TIME 2 DATA FOR PEOPLE WHO COMPLETED THE PAM AT BOTH TIME POINTS (PAM 13).

Not just about Patient Activation ...

The CS – PAM Reliably measures attitude of clinicians towards the role of patients in the care process1

Clinicians strongly endorse that patients should follow medical advice but are less likely to endorse that patients should be able to make independent judgements or take independent

actions

1 – Hibbard, Collins, Mahoney & Baker. 2009. Health Expectations 13:65-72

Case Study….In 2010 Jane’s kidneys failed at the same time as she was diagnosed with breast cancer…

“The breast cancer treatment was like a different world, wonderful resources, choices, information about all aspects of the disease and the treatment that was to come; there was such support. Kidney disease is

like a hidden thing which happens in dark places in the basement of hospitals; cancer care takes place in nice, bright, pleasant places. The

difference was enormous.”

Jane continued ….

“Kidney disease is very complicated and the language used is very difficult to understand but it’s important to give people control… the doctors were discussing my case just outside the room. I needed to know what was going on and be involved in the choices that were

made. When you have more information you feel empowered; it makes you feel you’re in partnership with the doctors and nurses.”

What Have We learnt?

1. Use of the PAM is feasible within the English NHS to help identify people with, or approaching, end stage kidney disease who may benefit from interventions to help them take more of an active role in their healthcare

2. The low scores, when compared to all long term conditions, suggest that increased activation of this group of patients should be investigated through the use of novel interventions, such as care planning and approaches aimed at improved shared decision making – particularly older patients and patients on the conservative care pathway – in order to improve quality of life and health outcome in this group

3. Raises questions about the suitability of PAM for people approaching the end of their lives

4. Not just about patient willingness to be part of the care team – health care professionals equally have a role to play

5. Recognise for some older and frailer people, taking a more active role in their healthcare may be unrealistic

Acknowledgements:

• Dr Donal O’Donoghue• Beverley Matthews• Dr Rob Elias• Dr Grace Sweeney• Dr Felix Mukoro

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