Table 3. Major comments and adaptations in the alpha test

Weighting method for importance of DMD characteristics by patient

1

Direct rating does not force patient to differentiate in importance of characteristics

Observations of rating by patients in round 2

2

Several patients rated all characteristics as very important

Alternative weighting methods (i.e. Simple Multiattribute Rating Technique (SMART) and Point Allocation) were incorporated in the patient decision aid as a try-out.

3

Other weighting methods were found to be too complex

Direct rating was applied

Usability of sliders

2

Intervals of 1 decimal are too small

Check boxes replaced the sliders

2

Sliders are difficult for scoring zero

2

Sliders are difficult if patient’s coordination is reduced

Patient’s ability to answer questions

1

Patients cannot decide on their eligibility for second-line treatment.

Framing of questions adapted: "Are you willing to accept higher risks of severe adverse events, for more efficacy?"

Patients might not be able to answer questions regarding other medication use.

Explanation of medications was added

2

Too difficult to answer which type of medication to include

Question whether to include all DMDs was deleted

Questions about comorbidity, other substances/medication, MS type are too difficult for patients

Since a 'don't know' option was available, no adjustments were made

3

Patients need instructions on how to answer questions about MS type and type of DMDs

Patients may receive a note summarizing their medical history or the healthcare professional fills out the question for the patient

Rating side effects

1

Do not include all 36 side effects. It could scare people

List was reduced to the 10 most common side effects

2

The list of side effects puts off: "I don't want to get any of them"

3

No comments were made

Disease courses

1

Include the progressive types of MS and add illustrations to clarify the differences in disease courses

Information and figures were added

2

Figures should illustrate the decline in abilities, instead of the increase in disabilities

Contradictory reactions. Some participants found the explanations about the disease courses clear with the figures as they were, some wanted a change. Figures were kept as they were to connect to the verbal explanation of the disease course, which is also in terms of increasing disability. Further evaluation in beta testing

3

Consider whether to illustrate the decline in abilities, instead of the increase in disabilities

Summary page

1

The healthcare professional needs to know how the patient’s answers affected the selection of DMDs.

Summary page was added, including information about DMD selection based on the patient’s eligibility

2

no additional comments

3

no additional comments

End screen

1

The amount of information on the end screen is overwhelming

Information on weighting and performance scores of the DMDs was made optional. Instructions were added to explain the additional functions to patients.

2

The instructions are too elaborate and difficult to understand

The instructions were adjusted a number of times and tested with new patients. Visual instructions were added in figures which showed how to access additional information. Still, instructions were too difficult for all patients to understand the whole end screen. The end screen was divided in two parts. The first part presents only the rankings of the DMDs and explanations focus only on explaining these rankings. Access to the second part, which explains in depth how the rankings were compiled, is optional

3

The patient decision aid may not be suitable for patients to go through individually, except for highly-educated patients. Consider whether an MS nurse should guide the patient in the use of the patient decision aid

Beta test should show whether the guidance of an MS nurse is feasible and desirable for patients

Additional reading

2

Preference for the possibility of reading more information on DMDs of choice

An option to select three DMDs to read more about was included. The patient decision aid provides a schematic overview of the selected DMDs, according to the characteristics

3

No additional comments were made