Healthcare Professional Needs Assessment Survey

Improving outcomes for Patients with Bone Marrow Failure Syndromes and their families

Thank you for taking the time to complete this survey.

We are seeking to better understand the learning and information needs of healthcare professionals who support patients and families affected by Bone Marrow Failure Syndromes (BMFS).

BMFS are rare, complex, and often life-threatening conditions that can significantly impact patients and their families. Many of those affected are children and young people, facing ongoing health challenges and uncertainty.

Your insights will help us develop practical, accessible educational resources to better support you in delivering confident, informed care.

Following analysis of the survey findings, Maddie Riewoldt’s Vision will work with our expert Educational Outreach Committee to develop a suite of educational resources tailored to the needs and preferences identified by healthcare professionals. We encourage you to provide your contact details at the end of the survey if you would like to receive these resources as they become available and stay informed about future educational opportunities.

We also encourage you to share this survey with colleagues who support, or may encounter, patients and families affected by BMFS, particularly those working in primary care, regional, rural or remote settings, or supporting culturally and linguistically diverse communities.

This survey should take approximately 5–7 minutes to complete.

Section 1 – About You

Question Title

1. What is your professional role? (Required.)

General Practitioner

Haematologist / Oncologist

Physician (other)

Indigenous Doctor

Nurse Manager

Nurse Educator

Nurse Practitioner

Registered Nurse

Enrolled Nurse

Indigenous Nurse

Nurse Researcher

Pathologist

Pharmacist

Allied Health Professional

Indigenous Allied Health Professional

Psychiatrist

Other (please specify)

Question Title

2. In which work settings do you provide care? Please select all that apply. (Required.)

Metropolitan

Regional

Rural

Remote

Question Title

3. Which Australian State or Territory are you based?

VIC

NSW

QLD

ACT

TAS

National

Question Title

4. Which areas do you work in? Please select all that apply. (Required.)

Primary healthcare services

Indigenous healthcare services

Culturally diverse/Ethnic healthcare services

General Practice

Community healthcare services

Paramedic Services

Emergency Medicine

Acute services, General Medicine

Acute services, Haematology

Acute services, Oncology

Acute services, Transplant and Cellular Therapy

Genetic services

Fertility services

Laboratory / Pathology

Research

Other (please specify)

Question Title

5. Which BMFS patient groups do you most commonly support? Please select all that apply. (Required.)

Paediatric patients

Adolescent and young adult patients

Adult patients

Parents/carers/families

I do not currently provide direct support to patients or families affected by BMFS

Other (please specify)

Section 2 – Your Experience with BMFS

Question Title

6. How much of your role involves caring for patients with BMFS? (Required.)

Minimal

Primary focus

Clear

i We adjusted the number you entered based on the slider’s scale.

Question Title

7. Which BMFS conditions have you encountered in your work? Please select all that apply. (Required.)

Aplastic anaemia

Fanconi anaemia

Dyskeratosis congenita /telomere biology disorders

Diamond-Blackfan anaemia

Shwachman-Diamond syndrome

Congenital neutropenia

GATA2 deficiency

Unsure

I have not encountered a patient with BMFS

Other inherited BMFS - (Please specify - free text)

Question Title

8. How would you rate your understanding of BMFS (symptoms, diagnosis, treatment, and follow-up care)? (Required.)

Not at all

Very well

Clear

i We adjusted the number you entered based on the slider’s scale.

Question Title

9. Have you received any education or training on BMFS? Please select all that apply. (Required.)

Yes – during formal studies

Yes – workplace training

Yes – online course

Yes – webinar

No formal training

Other (please specify)

Question Title

10. Please share any BMFS education, training or clinical resources that have helped your own understanding or practice.

Question Title

11. Which formats of BMFS education would you find most useful? Please select all that apply. (Required.)

Online self-paced modules

Online webinars or workshops (live)

In-person sessions or workshops

Websites

Mobile-friendly resources

One-page quick reference guides or checklists

Brief fact sheets (1–2 pages)

Clinical algorithms or flowcharts

Short videos

Recorded presentations

Interactive case studies

Podcasts

Printed materials

Peer discussions or mentoring

Other (please specify)

Question Title

12. What length of BMFS educational resources or activities would you be most likely to engage with? Please select all that apply. (Required.)

≤10 minutes

15–30 minutes

45–60 minutes

1–2 hours

Half-day workshop

Full-day workshop

No preference

Other (please specify)

Question Title

13. When would you be most likely to access BMFS educational resources? Please select all that apply. (Required.)

During protected education or CPD time

During short breaks between clinical tasks

Before or after work

At the point of care, when supporting a patient or family

Before seeing a patient with suspected or confirmed BMFS

Other (please specify)

Question Title

14. What would most motivate you to access BMFS educational resources? Please select all that apply. (Required.)

Improving patient care

Improving early recognition, diagnosis and referral of BMFS

Increasing my confidence

Managing rare disease presentations

CPD/professional development

Having easy access to practical information

Keeping up to date

Supporting patients and families

Other (please specify)

Question Title

15. Which BMFS education topics would be most useful to you? Please select up to five. (Required.)

When to refer or escalate concerns

Fertility preservation

Diagnostic pathways, including genetic testing

Communicating with patients and families about rare diagnoses

Supportive care and monitoring

Long-term follow-up and survivorship

Blood product support and transfusion considerations

Transition from paediatric to adult care

Recognising signs and symptoms of BMFS

Treatment options, including immunosuppressive therapy and transplant

Differences between acquired and inherited BMFS

Provision of and referral to psychosocial and family support services

Culturally safe care and communication

Other (please specify)

Question Title

16. What makes it difficult for you to access or use BMFS information and educational resources? Please select all that apply. (Required.)

Limited time

Limited access to training opportunities

Information is too complex

Difficult to find reliable information

Resources are too long

Resources are not relevant to my practice

Restricted access, including login requirements, institutional access restrictions, subscription costs or paywalls

Poor internet access or technology limitations

Lack of awareness of available resources

Not part of my role

Other (please specify)

Question Title

17. Where do you currently go for clinical information or education about rare conditions such as BMFS? Please select all that apply. (Required.)

Hospital guidelines

Local protocols

RCH Clinical Guidelines

eviQ Education

UpToDate

Medcast

HealthPathways

Therapeutic Guidelines

Professional colleges/societies

PubMed/peer reviewed literature

Google/Internet search

MRV website

Rare Voices Australia Website/RARE Portal

Professional Colleagues

AI tools (e.g. Heidi, ChatGPT, Microsoft Copilot)

I don't routinely access BMFS resources

Other (please specify)

Section 3 – Supporting Patients & Families

Question Title

18. How confident do you feel answering questions from patients and families about BMFS? (Required.)

Not confident at all

Extremely confident

Clear

i We adjusted the number you entered based on the slider’s scale.

Question Title

19. At which points in the patient journey would additional guidance be most helpful? Please select all that apply. (Required.)

Initial presentation / recognising red flags

Referral and diagnostic work-up

Explaining diagnosis to patients and families

Treatment decision-making

Managing complications or deterioration

Supporting patients during transplant

Discharge planning and community follow-up

Long-term follow-up / survivorship

Transition to adult services

End-of-life or bereavement support

Other (please specify)

Question Title

20. Which of the following would help increase your confidence? Please select three. (Required.)

More exposure to BMFS patients

More education about BMFS

Easy-to-understand resources (e.g. fact sheets, FAQs)

Quick reference guides / cheat sheets

Workshops or ongoing professional development

Videos or audiovisual resources

Peer support or mentoring

Other (please specify)

Question Title

21. Where do you usually direct patients or families for more information about BMFS? Please select all that apply. (Required.)

Treating specialist

Clinical nurse / coordinator

Hospital or health service website

Maddie Riewoldt’s Vision (MRV) website

Printed materials (brochures, fact sheets)

MRV Tele-Support Service

MRV Peer support groups

Other not-for-profit organisations (please specify)

I don’t usually provide resources

Other (please specify)

Question Title

22. Are there any BMFS resources you regularly recommend to patients or families?

Question Title

23. Do you use any culturally appropriate BMFS resources (e.g. for Aboriginal and Torres Strait Islander or CALD communities)?

Question Title

24. Are there any BMFS education resources or other services you wish existed to better support your patients and families?

Question Title

25. Any additional comments or suggestions?

Question Title

26. If you would like to be notified once the BMFS Educational Resources become available, please share your details below and we will contact you.

Thank You

We truly appreciate your time, insights, and the care you provide to patients and families.

Your input will directly help improve support and education for the BMFS community.

Healthcare Professional Needs Assessment Survey

Improving outcomes for Patients with Bone Marrow Failure Syndromes and their families

Question Title

* 1. What is your professional role? (Required.)

Question Title

* 2. In which work settings do you provide care? Please select all that apply. (Required.)

Question Title

* 3. Which Australian State or Territory are you based?

Question Title

* 4. Which areas do you work in? Please select all that apply. (Required.)

Question Title

* 5. Which BMFS patient groups do you most commonly support? Please select all that apply. (Required.)

Question Title

* 6. How much of your role involves caring for patients with BMFS? (Required.)

Question Title

* 7. Which BMFS conditions have you encountered in your work? Please select all that apply. (Required.)

Question Title

* 8. How would you rate your understanding of BMFS (symptoms, diagnosis, treatment, and follow-up care)? (Required.)

Question Title

* 9. Have you received any education or training on BMFS? Please select all that apply. (Required.)

Question Title

* 10. Please share any BMFS education, training or clinical resources that have helped your own understanding or practice.

Question Title

* 11. Which formats of BMFS education would you find most useful? Please select all that apply. (Required.)

Question Title

* 12. What length of BMFS educational resources or activities would you be most likely to engage with? Please select all that apply. (Required.)

Question Title

* 13. When would you be most likely to access BMFS educational resources? Please select all that apply. (Required.)

Question Title

* 14. What would most motivate you to access BMFS educational resources? Please select all that apply. (Required.)

Question Title

* 15. Which BMFS education topics would be most useful to you? Please select up to five. (Required.)

Question Title

* 16. What makes it difficult for you to access or use BMFS information and educational resources? Please select all that apply. (Required.)

Question Title

* 17. Where do you currently go for clinical information or education about rare conditions such as BMFS? Please select all that apply. (Required.)

Question Title

* 18. How confident do you feel answering questions from patients and families about BMFS? (Required.)

Question Title

* 19. At which points in the patient journey would additional guidance be most helpful? Please select all that apply. (Required.)

Question Title

* 20. Which of the following would help increase your confidence? Please select three. (Required.)

Question Title

* 21. Where do you usually direct patients or families for more information about BMFS? Please select all that apply. (Required.)

Question Title

* 22. Are there any BMFS resources you regularly recommend to patients or families?

Question Title

* 23. Do you use any culturally appropriate BMFS resources (e.g. for Aboriginal and Torres Strait Islander or CALD communities)?

Question Title

* 24. Are there any BMFS education resources or other services you wish existed to better support your patients and families?

Question Title

* 25. Any additional comments or suggestions?

Question Title

* 26. If you would like to be notified once the BMFS Educational Resources become available, please share your details below and we will contact you.

1. What is your professional role? (Required.)

2. In which work settings do you provide care? Please select all that apply. (Required.)

3. Which Australian State or Territory are you based?

4. Which areas do you work in? Please select all that apply. (Required.)

5. Which BMFS patient groups do you most commonly support? Please select all that apply. (Required.)

6. How much of your role involves caring for patients with BMFS? (Required.)

7. Which BMFS conditions have you encountered in your work? Please select all that apply. (Required.)

8. How would you rate your understanding of BMFS (symptoms, diagnosis, treatment, and follow-up care)? (Required.)

9. Have you received any education or training on BMFS? Please select all that apply. (Required.)

10. Please share any BMFS education, training or clinical resources that have helped your own understanding or practice.

11. Which formats of BMFS education would you find most useful? Please select all that apply. (Required.)

12. What length of BMFS educational resources or activities would you be most likely to engage with? Please select all that apply. (Required.)

13. When would you be most likely to access BMFS educational resources? Please select all that apply. (Required.)

14. What would most motivate you to access BMFS educational resources? Please select all that apply. (Required.)

15. Which BMFS education topics would be most useful to you? Please select up to five. (Required.)

16. What makes it difficult for you to access or use BMFS information and educational resources? Please select all that apply. (Required.)

17. Where do you currently go for clinical information or education about rare conditions such as BMFS? Please select all that apply. (Required.)

18. How confident do you feel answering questions from patients and families about BMFS? (Required.)

19. At which points in the patient journey would additional guidance be most helpful? Please select all that apply. (Required.)

20. Which of the following would help increase your confidence? Please select three. (Required.)

21. Where do you usually direct patients or families for more information about BMFS? Please select all that apply. (Required.)

22. Are there any BMFS resources you regularly recommend to patients or families?

23. Do you use any culturally appropriate BMFS resources (e.g. for Aboriginal and Torres Strait Islander or CALD communities)?

24. Are there any BMFS education resources or other services you wish existed to better support your patients and families?

25. Any additional comments or suggestions?

26. If you would like to be notified once the BMFS Educational Resources become available, please share your details below and we will contact you.