Session Information
Date: Sunday, November 8, 2015
Title: Systemic Lupus Erythematosus - Clinical Aspects and Treatment Poster Session I
Session Type: ACR Poster Session A
Session Time: 9:00AM-11:00AM
Background/Purpose:
Our objective was to
derive a cognitive map of how stakeholders perceive patient-identified
facilitators to establish a theoretical framework for the purpose of developing
future interventions to improve medication decision-making process for lupus
patients.
Methods:
We first conducted 8
Nominal group technique (NGT) meetings and a card-sort task
were used to obtain formative data from 52 lupus nephritis patients at
two teaching hospitals. Patients prioritized 98 facilitators as having
relatively more influence in their own decision-making processes. Next, 24
stakeholders independently grouped those 98 facilitators based on similarities.
The data were analyzed using multidimensional scaling and hierarchical cluster
analysis. The stakeholders also used a 5-point Likert scale to indicate their
level of agreement or disagreement, with the ability of each facilitator that
can be used to improve patient decision-making processes.
Results: The stakeholders included 11
physicians, 3 patients, 2 patient representatives, and 8 medical professionals.
A 2-dimensional 10-cluster cognitive map provided an organizational
framework for
understanding those facilitators: 1) Hope for normal/healthy life, 2)
Understanding benefits and effectiveness of taking medications, 3)
Minimal side effects, 4) Medication education, 5) Medication
effectiveness for me, 6) Family focused, 7) Confidence in physician, 8)
Reassurance about medication, 9) Medication economics, and 10) Medication
research. We mapped the facilitators along 2 dimensions: the x-axis represented
patients’ internal needs about lupus treatment with medication education on the
left and family focused on the right. The y-axis represented external issues
with confidence in physician at the top, and minimal
side effects at the bottom. The top 4 facilitators from each cluster are
depicted in the Figure 1 and mean ratings are listed in the Table 1. Based on
their ratings, stakeholders highly agreed that the hope for normal/healthy life
cluster (mean ± SD, 4.67±0.12) is most important. They indicated that the
Medication research cluster (3.41 ± 0.56) is least important.
Conclusion: The identified clusters generated by
stakeholder agreement using cognitive mapping provide a basis for a theoretical
framework, such as the theory of reasoned action, from which to develop future
tailored interventions to improve patient decision-making processes.
Table
1. Clusters
of Facilitators and Attributes in Each Cluster
|
Card# |
Cards |
Mean |
SD |
|
Cluster 1: Hope for normal/healthy life |
4.67 |
.12 |
|
|
1 |
Wanting to live as normal life as possible |
4.78 |
.42 |
|
18 |
To be able to live a normal life without so many complications |
4.70 |
.47 |
|
65 |
Wanting to be healthier to work/to live |
4.68 |
.48 |
|
21 |
Desire to stay active/healthy |
4.50 |
.67 |
|
Cluster 2: Understanding benefits and effectiveness of taking medications |
4.46 |
.12 |
|
|
11 |
Knowing how effective the medication is |
4.57 |
.51 |
|
25 |
Knowing what the benefits are for me if I take the medication |
4.52 |
.51 |
|
71 |
Understanding how important the medication is for me |
4.30 |
.56 |
|
22 |
Getting an explanation of side effects and the benefits the medicine has for my kidney |
4.43 |
.59 |
|
Cluster 3: Minimal side effects |
4.26 |
.20 |
|
|
68 |
If the medicine had the least amount of side effects |
4.00 |
.82 |
|
72 |
If it does not have extreme side effects |
4.35 |
.57 |
|
7 |
Knowing that it won’t aggrevate other conditions (e.g., having side effects on lung) |
4.22 |
.67 |
|
6 |
Knowing about the side effects |
4.48 |
.51 |
|
Cluster 4: Medication education |
3.65 |
.37 |
|
|
87 |
Hearing about studies that have been done and if they were successful |
3.96 |
.98 |
|
97 |
Seeing how much research is available about the medication |
3.87 |
.97 |
|
63 |
Would like more research on the failure of medication |
3.14 |
.94 |
|
37 |
Having proof of concept (evidence/statistics–that the medication works) |
3.65 |
.83 |
|
|
Cluster 5: Medication effectiveness for me |
3.65 |
.39 |
|
81 |
You’ve tried everything else and nothing has worked |
4.00 |
.74 |
|
88 |
Knowing that the drug won’t affect my ability to have children |
3.43 |
1.38 |
|
53 |
Having a positive outlook on my diagnosis and treatment |
3.96 |
1.07 |
|
84 |
The fewer the medicine, the better |
3.22 |
1.20 |
|
Cluster 6: Family focused |
3.64 |
.46 |
|
|
41 |
To be able to have a healthy pregnancy in the future |
3.27 |
1.35 |
|
95 |
Being able to do the stuff that my spouse expects me to do |
3.57 |
1.34 |
|
49 |
Not having to have as many doctor visits |
3.41 |
1.05 |
|
2 |
My kids are the reason and I want be there for them (if I don’t take the medication, I am a mess) |
4.30 |
.70 |
|
|
Cluster 7: Confidence in physician |
3.59 |
.39 |
|
56 |
If the doctor tell you what he wants and expects to see happen with you if you take the medication |
3.57 |
.73 |
|
86 |
It would be nice to know if the doctors are not being paid/sponsored for prescribing the medication |
3.65 |
1.23 |
|
38 |
Doctor’s knowledge of the drugs prescribed |
4.04 |
.93 |
|
5 |
Because the doctors know more than I do |
3.09 |
1.12 |
|
Cluster 8: Reassurance about medication |
3.48 |
.12 |
|
|
60 |
Hearing about people who have been treated with this medication and that it worked |
3.65 |
1.15 |
|
83 |
Getting education about how the medicine would affect my pregnancy |
3.43 |
1.38 |
|
62 |
If I will be able to stop taking medicine after a period of time |
3.36 |
.90 |
|
69 |
Understanding how the medicine will affect my ability to have children in the future |
3.45 |
1.44 |
|
|
Cluster 9: Medication economics |
3.47 |
.12 |
|
35 |
Having resources to pay for the drugs |
3.57 |
1.08 |
|
43 |
Being able to afford it |
3.50 |
1.19 |
|
4 |
Low cost |
3.52 |
1.31 |
|
9 |
If it is affordable |
3.30 |
1.33 |
|
|
Cluster 10: Medication research |
3.41 |
.56 |
|
19 |
Knowing if it is approved by FDA or is it just an experimental drug |
3.04 |
1.11 |
|
28 |
Having proof that the medication works |
4.22 |
.80 |
|
51 |
Researching on my own |
3.39 |
.58 |
|
46 |
Knowing how long the medicine has to be taken–the shorter the better |
3.00 |
.93 |
|
Total |
|
3.83 |
.56 |
Figure
1. Clusters
of Facilitators and Attributes in Each Cluster
To cite this abstract in AMA style:
Qu H, Yazdany J, Chatham WW, Shewchuk R, Singh JA. Mapping Perceptions of Medication Decision Making Facilitators: The Importance of Patient Context [abstract]. Arthritis Rheumatol. 2015; 67 (suppl 10). https://acrabstracts.org/abstract/mapping-perceptions-of-medication-decision-making-facilitators-the-importance-of-patient-context/. Accessed .« Back to 2015 ACR/ARHP Annual Meeting
ACR Meeting Abstracts - https://acrabstracts.org/abstract/mapping-perceptions-of-medication-decision-making-facilitators-the-importance-of-patient-context/