A Study Comparing Patient and Clinician Perspectives of Treatments for Multiple Sclerosis via Group Concept Mapping

Figures & data

Figure 1 GCM task flow.

Abbreviation: GCM, group concept mapping.

Table 1 Demographic Information for MS Patients

Demographic Variables	Statistics	N = 20
Age, y	n	20
	Mean (SD)	44.3 (10.5)
	Median	42.0
	Min, max	25, 66
Sex, n (%)	Female	15 (75.0)
	Male	5 (25.0)
Ethnicity, n (%)	Not Hispanic	20 (100)
Race, n (%)	White	15 (75.0)
	Black/African American	5 (25.0)
Education, n (%)	Did not complete high school	1 (5.0)
	High school diploma	2 (10.0)
	Some college or certification program	6 (30.0)
	College or university degree	8 (40.0)
	Graduate degree	3 (15.0)
Work status, n (%)	Employed full-time	14 (70.0)
	Employed part-time	2 (10.0)
	Homemaker	2 (10.0)
	Retired	1 (5.0)
	Other	1 (5.0)

Abbreviation: MS, multiple sclerosis.

Table 2 Background Information for Participating MS Specialists (Clinicians)

Clinician Background Characteristic	Total (N = 12)
Years qualified as MD, n
6–10 years	1
11–20 years	1
More than 20 years	10
Type of practice, n
Private practice	12
Current type of patient population, n
Outpatient only	5
Combination of inpatient and outpatient	7
Years treating MS, n
6–10 years	1
11–20 years	1
>20 years	10
MS patients clinic manages per month (average), n
Mean (SD)	61 (49.5)
Min–max	10–150
Patients currently on treatment, %, mean (SD)
Disease-modifying therapies	92 (4.1)
Symptomatic management therapies	68.5 (23.2)
Not prescribed any therapies	7.1 (4.8)

Abbreviations: MD, medical doctor; MS, multiple sclerosis.

Figure 2 GCM analytic steps.

Abbreviations: GCM, group concept mapping, 2-D, 2-dimensional.

Table 3 Descriptive Statistics for GCM-Derived Domains and Corresponding Statements

Item ID^a	Statements	Mean (SD)^b	Median	Min–Max
Activities of Daily Living		8.63 (2.23)	9	0–10
3	Improve motor function	9.25 (1.19)	10	5–10
42	Improve balance	9.08 (1.39)	10	5–10
22	Help physical function	9.00 (1.17)	9	6–10
43	Improve cognitive function	8.97 (1.35)	10	5–10
2	Help physical daily functioning for a more active social life	8.69 (1.37)	9	5–10
5	Help with visual impairment	8.63 (1.53)	9	5–10
34	Improve ambulation (walking) conveniently without harmful side effects	8.59 (1.58)	9	5–10
56	Address fatigue	8.52 (1.51)	9	5–10
59	Provide more sustained energy to return to high functioning	8.50 (1.6)	9	5–10
55	Focus on physical activity	7.94 (2.4)	9	0–10
57	Help improve gait	7.87 (2.75)	9	0–10
Address Symptoms		8.42 (1.87)	9	0–10
28	Help with memory issues	9.07 (1.04)	9	7–10
64	Treat pain associated with multiple sclerosis (MS) conveniently and safely	9.00 (1.47)	10	5–10
18	Help preserve cognition	8.87 (1.31)	9	5–10
16	Restore sensation or feeling	8.73 (1.37)	9	5–10
35	Improve short term memory	8.66 (1.45)	9	5–10
20	Relieve the symptoms to make one’s daily routine easier	8.59 (1.38)	9	6–10
40	Effectively treat bladder problems	8.45 (1.75)	9	4–10
53	Provide a cure for tingling	8.36 (2.27)	9	1–10
54	Treat spasticity (stiffness, tightness, cramping, spasms) with medication	8.30 (1.86)	9	3–10
45	Be one that patients notice an improvement in their function when taking it	8.23 (2.3)	9	2–10
60	Include dizziness treatment to reduce spinning	8.10 (1.63)	8	5–10
49	Take away shaking	8.04 (2.35)	9	0–10
29	Include treatment for insomnia	7.11 (2.85)	8	0–10
Medicine Assets		7.71 (2.64)	9	0–10
31	Be a medicine that would slow the progression of the disease	9.35 (1.05)	10	7–10
7	Be a medication with no side effects	9.21 (1.24)	10	5–10
27	Have no or minimal side effects	8.97 (1.38)	10	6–10
17	Be a medicine that would allow one to lead a normal, healthy lifestyle	8.90 (1.30)	10	6–10
14	Be a once-a-day medication with no risk of progressive multifocal leukoencephalopathy (PML) or cancer	8.80 (1.38)	9	5–10
36	Effective and safe drug for fatigue	8.52 (1.48)	9	4–10
11	Be one medication to address all symptoms	8.14 (1.91)	9	2–10
6	Include a “booster” taken in flare-up situations to limit the negative impact on the body	7.90 (2.34)	8	0–10
52	Be an alternative to injections	7.84 (2.47)	8	1–10
24	Be a medication taken once a month or longer	7.52 (2.37)	8	0–10
38	Treat pain with medication without sedation	7.25 (2.48)	7	0–10
50	Not require refrigeration	5.50 (3.08)	6	0–10
26	Be a liquid medication	5.25 (3.49)	6	0–10
37	Be medication in the form of a gummy	4.83 (3.38)	5	0–10
Safe & Effective		8.31 (2.23)	9	0–10
48	Be safe, convenient, and reverse previous damage	9.14 (1.36)	10	5–10
30	Increase percent of patients who are relapse free	8.69 (1.42)	9	5–10
46	Work without putting the body at risk of cancer or heart problems	8.63 (2.36)	10	0–10
62	Have no increased chance of malignancy, low white blood cell count, or increase risks of infection	8.57 (2.45)	10	0–10
33	Be one where the effectiveness does not decline over years	8.52 (1.51)	9	5–10
19	Be a cure for progressive multifocal leukoencephalopathy (PML)	8.45 (2.27)	9	0–10
51	Include information on long term side effects and safety	7.90 (2.87)	9	0–10
32	Require no monitoring	7.68 (2.08)	8	2–10
44	Provide data on different types of medications	7.18 (2.83)	8	0–10
Prevent & Cure		8.98 (1.90)	9	0–10
41	Reverse prior deficits	9.32 (0.93)	10	7–10
25	Stabilize progression while reversing damage that has occurred in the brain	9.25 (1.49)	10	3–10
4	Focus on a permanent solution for all kinds of multiple sclerosis (MS)	9.22 (1.38)	10	5–10
47	Protect nerve cells and aid in neural repair	9.20 (1.30)	10	5–10
63	Include a way to detect progression before harm is caused	8.97 (2.03)	10	0–10
1	Be a vaccine to prevent the disease	8.94 (2.09)	10	0–10
10	Be a cure for multiple sclerosis (MS)	8.90 (2.70)	10	0–10
39	Make one multiple sclerosis (MS) free	8.75 (2.31)	10	0–10
15	Include a rapid blood test to monitor and direct the right treatment	8.32 (2.27)	9	0–10
Nonspecific (Holistic & Economical)		7.43 (2.74)	9	0–10
23	Have insurance approve medication of your choice without having to fail two prior medications	8.80 (2.13)	10	0–10
13	Be inexpensive	8.52 (2.31)	9	0–10
21	Take the entire patient into account	8.14 (2.28)	9	0–10
58	Lead to feeling better about myself	7.40 (2.61)	8	0–10
12	Have insurance coverage for holistic and alternative treatments such as yoga, massage, acupuncture	6.97 (2.62)	7	0–10
9	Focus on dietary changes that improve immune function	6.87 (2.73)	8	0–10
61	Include information for patients to know when they should contact their primary doctor instead of their MS doctor	6.50 (2.96)	8	0–10
8	Be an advanced diet	6.25 (3.30)	7	0–10

Notes: ^aItems sorted by their mean importance rating (largest to smallest) within each domain. ^bDomain mean and standard deviation are calculated by averaging responses from all participants across all items within the domain. Item mean and standard deviation are calculated by averaging responses from all participants within the specific item.

Abbreviation: GCM, group concept mapping.

Figure 3 Cluster mapping of participant sorts and ratings. (A) Point cluster map; (B) cluster-ratings map.

Figure 4 Pattern matching of patient and clinician importance ratings by domain.

Figure 5 Address Symptoms domain scatterplot comparing patient and clinician mean ratings of importance by statement. The upper right quadrant (green) indicates statements above the mean for both patients and clinicians. The lower left quadrant (white) indicates statements below the mean for both patients and clinicians. The opposite quadrants indicate statements above the mean for patients/below the mean for clinicians (orange) and above the mean for clinicians/below the mean for patients (yellow).

Figure 6 Activities of Daily Living domain scatterplot comparing patient and clinician mean ratings of importance by statement. The upper right quadrant (green) indicates statements above the mean for both patients and clinicians. The lower left quadrant (white) indicates statements below the mean for both patients and clinicians. The opposite quadrants indicate statements above the mean for patients/below the mean for clinicians (orange) and above the mean for clinicians/below the mean for patients (yellow).