Innovative Medical Technology and the Treatment Decision-Making Process in Multiple Sclerosis: A Focus Group Study to Examine Patient Perspectives

Figures & data

Table 1 Patient Demographics

	Total (n=16)	Online Survey (n=93)
Age, mean (range)	61 (48–82)	44 (23–70)
Age at diagnose, mean (range)	42 (29–70)	35 (15–64)
Gender, n (%)^a
Male	3 (19)	22 (24)
Female	13 (81)	70 (75)
MS Type^b
RRMS	9 (56)	72 (77)
PPMS	2 (13)	11 (12)
SPMS	4 (25)	9 (10)
Disease severity, n (%)^c
Mild	1 (6)	19 (20)
Moderate	8 (50)	20 (22)
Severe	4 (25)	4 (4)
Unknown	3 (19)	33 (18)
Treatment, n (%)
Treatment naïve	4 (25)	10 (11)
Treatment experienced, but not currently on DMT^d	9 (56)	20 (22)
On 1st line DMT	2 (13)	17 (18)
On 2nd line DMT	1 (6)	46 (50)
Marital status, n (%)
Single		19 (20)
Partnered	1 (6)	23 (25)
Married	12 (75)	44 (47)
Divorced	1 (6)	5 (5)
Widowed	2 (13)	2 (2)
Education, n (%)
Primary/secondary education	7 (44)	10 (11)
Vocational/technical education	7 (44)	44 (47)
University	2 (13)	39 (42)

Notes: ^aThe online survey also provided the answer category: prefer not to say (n=1), ^bThe online survey also provided the answer category: clinically isolated syndrome (n=1), ^cThe online survey had n=17 (18%) missing, ^dIn the focus groups the number of past disease-modifying therapies (DMT) used ranged from 1–4.

Abbreviations: MS, multiple sclerosis; PPMS, primary progressive multiple sclerosis; RRMS, relapsing-remitting multiple sclerosis; SPMS, secondary progressive multiple sclerosis.

Table 2 Codes Used for the Inductive Analysis to the Finalized Themes

Theme	Contributing Codes
Uncertainty vs control	Adverse events Body failing to cooperate Causes of MS unknown Efficacy of DMT unknown and the effect of DMT on the body Frustration that new research and development of DMTs is focussed on reducing disease progression Uncertainty of disease progression
The decision-making process	Reasons for initiation of DMT (the need to understand MS before starting treatment; trade-offs regarding treatment choice: efficacy, safety profile, mode of administration) Reasons for continuation of the DMT (hope; at ease with current DMT) Reasons for discontinuation of the DMT (adverse events; doubts about efficacy; disease progression) Shared decision-making with health care practitioner
The implantable device	Concerns about the implant (efficacy; safety profile) Confrontation of being sick Reasons to opt for the implant (or not)

Abbreviations: DMT, disease-modifying therapy.

Table 3 Topics and Related Quotes That Play a Role in the Interest in the Optogenerapy Implant

Topic	Interest in Device	Example Quotes
The process of administering treatment (n=30)	Yes (n=13)	“Ease of use” “I would not forget taking my medication” “No more daily confrontation with MS”
	Maybe (n=16)	“Not easy to stop the treatment when experiencing side effects” “I find it a bit scary” “I think the implant can have positive effects on mental well-being”
	No (n=1)	“I feel like all the medications I have used for MS have only made the MS worse”
Need or no need (n=25)	Yes (n=5)	“Good alternative to current medication because of difficulty injecting and swallowing” “Would have chosen the device in the past (when still injecting), now switched to infusion therapy”
	Maybe (n=11)	“I get the same results by smoking a joint” “Currently I have a treatment that I don”t have to administer myself”
	No (n=9)	“No current DMT use; however, interested if DMT use was needed” “Enough implantable devices in the body already”
Efficacy (n=23)
INFβ is not the correct DMT for the patients:
	Yes (n=0)
	Maybe (n=3)	“I have primary progressive MS, INFβ doesn”t work for me” “INFβ is not the right medication for me”
	No (n=7)	“I am not against the implant, but the medication that is given” “I have secondary progressive MS, INFβ doesn”t work for me”
Efficacy of INFβ is insufficient:
	Yes (n=0)
	Maybe (n=3)	“It depends on the percentage of reducing the disease progression” “I would consider it only if it has second-line treatment in it”
	No (n=4)	“As long as inhibitors have not been conclusively proven to be effective, I don”t want anything” “I would consider it if a second-line treatment was given in the device”
Evidence is needed on efficacy:
	Yes (n=0)
	Maybe (n=6)	“I want to see trial results first, but it sounds ideal” “It depends on the experiences of other MS patients and what my neurologist can tell me about it”
	No (n=0)
Side effects (n=19)	Yes (n=7)	“No skin lesions” “I assume the implant releases the medication spread out over the day, and this differs from taking a pill where the sudden overdoses gives me side effects”
	Maybe (n=6)	“It depends on the side effects, in doubt because INF-B is known for its side effects” “Perhaps with a better dosage the side effects will be less”
	No (n=6)	“I got sick from taking INF-B” “My veins closed when a Port-A-Cath was inserted”
Bodily integrity (n=11)	Yes (n=0)
	Maybe (n=9)	“I don”t like it that my body will be cut open” “No more control over when the treatment is administered”
	No (n=2)	“I do not want a foreign object in my body”

Abbreviations: N, the number of quotes found per topic; MS, multiple sclerosis.