Forms - Thalassaemia

Thalassaemia and Sickle Cell Society Survey

Purpose

General Information

Age:

Highest level of education completed:

Marital Status:

Current occupation or student status:

Ethnic background:

Current postcode:

Relationship to Thalassaemia

Patient

Family member

Friend of a Patient

Supporter

Treatment Information

Where are you currently receiving treatment?

How would you rate your treatment centre?

Poor

Fair

Satisfactory

Very good

Excellent

What do you like or dislike about it? please explain.

Describe your experience with your treatment centre, and tell us what, if any, could be improved.

How far to do you travel for treatment, and how does this impact your experience?

Do you experience anxiety, worry, or stress before treatment sessions? Please explain.

Healthcare Experience

How well do you think your treating doctor understands your Thalassaemia and your specific needs?

Not at all

Slightly

Moderately

Very much

Completely

Please explain.

How satisfied are you with your treating Doctor?

Not at all

Slightly

Moderately

Very much

Completely

Please provide details.

How satisfied are you with the nursing staff?

Not at all

Slightly

Moderately

Very much

Completely

Please provide details.

How would you rate the consistency and stability of your treatment?

Very Inconsistent

Inconsistent

Moderately Consistent

Consistent

Very Consistent

Please provide details:

Which additional medical examination/services are you required to receive:

What iron chelation treatment do you undergo?

On average, how well do you adhere to your treatment regimen? Please estimate your compliance.

How has the quality of your treatment changed over the past five years?

Deteriorated

Has not changed

Improved

Please explain.

What improvements would you like to see in your treatment centre to enhance your experience?

Community and Support

Do you socialise with other Thalassaemia patients during treatment?

Yes

How does your treatment centre facilitate Patients’ socialisation, if at all?

Do you interact with other Thalassaemia patients outside of treatment? If yes, how do you connect?

How did you first learn about the Thalassaemia and Sickle Cell Society of NSW?

Have you visited our website and/or follow our Social Media pages? If yes, what was your experience?

What do you know about the services provided by the Thalassaemia and Sickle Society of NSW?

Would you be interested in volunteering with the Thalassaemia and Sickle Cell Society? If yes, what role would interest you?

If you have used our Counselling service, how would you rate your experience?

Poor

Fair

Satisfactory

Very good

Excellent

Please explain.

If you haven't used our Counselling service, what factors prevent you from accessing it? (e.g., distance, time, language, etc.) Please explain.

Which of these programs would you consider joining? Why?

Support group (drop in)

Youth mentoring program (time limited) Facilitated playgroup (school term) Mothers circle (monthly)

Relationship skill building group therapy (10-week program)

Other

Please explain why.

How do you think connecting with older or other Thalassaemia patients would benefit you, if at all?

If you have ever reached out to Thalassaemia and Sickle Cell Society of NSW, how would you rate our service?

Poor

Fair

Satisfactory

Very good

Excellent

Please explain reasons for your rating.

33. Are you familiar with Thalassaemia International Federation (TIF)?

Yes

What is your primary source of information on Thalassaemia? (Treating Doctor, Other patients, Internet, TIF, Thalassaemia and Sickle Cell Society of NSW, Other: please specify)

Treating Doctor

Other patients

Internet

TIF

Thalassaemia and Sickle Cell Society of NSW

Other

To what extent do you feel you have access to the lates information? Please explain.

Do you find the available information useful and easy to understand? How could it be improved?

How would you rate the performance of the Thalassaemia Society of NSW? Please share your experience.

Poor

Fair

Satisfactory

Very good

Excellent

Untitled

What suggestions do you have for improving the services and support provided by the Thalassaemia Society?

Would you like to have the information in another language? If yes, which language/s?

Would you like us to provide a newsletter regularly?

Yes – I prefer to read it online.

Yes - I prefer to receive it in paper.

Yes – I don’t mind reading it online or in paper.

No – I’m not interested. (Yes-Online; Yes-Paper; Yes-No preference (online or paper); Not interested)

Events and Activities

Please tell us about your interests by selecting any of the following options.

Family Events (e.g., Picnic, indoor gatherings etc.)

Ladies’ Events (e.g., Brekkie/Lunch/Evening)

Men’s Events (e.g., Brekkie/Lunch/Evening)

Webinars (i.e., Online Information/educational Sessions)

In-Person Information/educational Sessions

Other

What locations of NSW would you like Thalassaemia and Sickle Cell Society of NSW to hold most of the events?

Central Business District (CBD)

Inner West

Northern Suburbs

Western Sydney

Southern Suburbs

Eastern Suburbs

Other

What best describes your preference for a suitable location for the events? (Please select all that apply)

Distance is very important; I am unlikely to attend events that are far from my residence.

Distance is important, but I am willing to attend events that are far from my residence if they are particularly important or interesting.

I prefer events held in central locations that are convenient for the majority of attendees.

I prefer locations that are easily accessible by public transport, mainly train and bus, regardless of the distance.

I have specific accessibility needs that must be met.

Other

If you are interested in online or in-person information/education sessions, what topics would you like them to cover?

What other community groups, associations, clubs or other non-government organisations are you a part of?

Wellbeing and Lifestyle

How often do you engage in physical activity each week? What types of exercise do you enjoy?

Do you pay special attention to your diet because of Thalassaemia? If, yes, how does this affect your food choices?

Do you travel overseas? If yes, do you receive treatment abroad?

In what ways does Thalassaemia limit your life (e.g., daily life, lifestyle choices, career or education, relationships, long-term plans, etc.) Please explain.

What concerns or fears do you have regarding your condition?

What positive aspects do you find in living with Thalassaemia?

Do you agree with the statement: “With the correct treatment, a Thalassaemia patient can lead a normal and fulfilling life”? Please explain:

Optional

Name

Would you like to receive updates on events and advocacy efforts via email? If yes, please provide your email address.

Would you like to enter a raffle for completing this Survey? If yes, please provide your email address.

Thalassaemia and Sickle Cell Society Survey

General Information

Treatment Information

Healthcare Experience

Community and Support

Events and Activities

Wellbeing and Lifestyle

Optional

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