Communicating with family and caregivers

Communicating well with family and carers is key to maintaining a healthy support system for a person with MS. By responding to this survey, you can help us further understand how often support persons are involved in your MS journey and what kind of communication tools are needed in conversations between PwMS, their carers and HCPs.

Thank you for helping us to understand your perspective on these sometimes tricky conversations.

Your responses will be used by EMD Serono on behalf of Merck KGaA, Darmstadt, Germany (the sponsoring pharmaceutical company) to inform the development of educational tools or publications. Your responses will be presented to the sponsor company in an aggregated and anonymous format. Your responses will remain confidential and will not be used for purposes other than those outlined above, or disclosed to any third party without your approval. You can withdraw from the survey at any time and have the right not to answer a particular question should you so wish.

Are you happy to participate in the survey on this basis?(Required)

Yes

No

I am from(Required)

I am a(Required)

How old is the person with MS that you are related to or care for?(Required)

0-17 years

18–24 years

25–39 years

40–49 years

50+ years

(Please select one)

How many years has it been since they were diagnosed with MS?(Required)

0–4 years

5–9 years

10–14 years

15–19 years

20+ years

(Please select one)

Since they were first diagnosed, on average, how often has the person with MS taken you to their appointments?(Required)

Almost always: >80% of the time

Often: 60–80% of the time

Sometimes: 40–60% of the time

Rarely: 20–40% of the time

Almost never: <20% of the time

I have never been to an appointment with them

(Please select one)

When do you think it is beneficial for a person with MS to take a support person to their appointments?(Required)

Throughout the entire patient journey

When newly diagnosed

Following relapse or disability progression

When making treatment decisions

When discussing lifestyle changes or family planning

Only if the person with MS requires full-time care

It is the patient’s choice

Never

(Please select all that apply)

To what extent do you think you influence decisions about the person with MS treatment and care?(Required)

Not at all – they make all decisions about their treatment and care themselves

They make decisions about their treatment and care themselves but with consideration for how they think it will affect me

They make the final decision but they will ask for my opinion

They wouldn’t make any decision without my agreement

I make all decisions about their treatment and care for them

(Please select one)

Which of the following would you find most useful for the person with MS’ HCP team to provide you with?(Required)

Peer-to-peer support groups

Educational resources about MS

In office educational sessions for patients and family members

Training on how to care for a person with MS

Access to the MS team via phone/email

Other

None of the above – we have sufficient support

(Please select all that apply)

How old are you?(Required)

(Please select one)

How many years has it been since you were diagnosed with MS?(Required)

0–4 years

5–9 years

10–14 years

15–19 years

20+ years

(Please select one)

Since you were first diagnosed, on average, how often have you taken a family member, carer or support person to your appointments?(Required)

Almost always: >80% of the time

Often: 60–80% of the time

Sometimes: 40–60% of the time

Rarely: 20–40% of the time

Almost never: <20% of the time

I have never taken anyone to an appointment with me

(Please select one)

When do you think it is beneficial to take a support person to your appointments?(Required)

Throughout the entire patient journey

When newly diagnosed

Following relapse or disability progression

When making treatment decisions

When discussing lifestyle changes or family planning

Only if I require full-time care

Never

(Please select all that apply)

To what extent do you think that your support persons influence your decisions about your MS treatment and care?(Required)

Not at all – I make all decisions about my treatment and care myself

I make decisions about my treatment and care myself but with consideration for how I think it will affect them

I make the final decision but I will ask for their opinions

I wouldn’t make any decision without their agreement

They make all decisions about my treatment and care for me

(Please select one)

Which of the following do you think support persons would find most useful for your HCP team to provide?(Required)

Peer-to-peer support groups

Educational resources about MS

In office educational sessions for patients and family members

Training on how to care for a person with MS

Access to the MS team via phone

Other

None of the above – we have sufficient support for this group

(Please select all that apply)

Communicating with family and caregivers survey

Thank you for helping us to understand your perspective on these sometimes tricky conversations.

Please indicate whether, in general, you think the following are true, false, or no different when the person with MS takes you to their appointments: