CFSA Member Survey 2019 Adults Living with CF and Organ Transplant

Welcome to the CFSA Member Survey for 2020.
The questions in this survey are designed for Adults living with Cystic Fibrosis and Organ Transplant from their personal perspective.  
Your responses to this survey are anonymous unless you choose to go into the draw for a $50 gift card.   
The information you provide will help guide CFSA's strategic and operational direction for the future and questions which relate to the care you receive may be shared with your care team.  If you do not attend the RAH, there are questions for you too. 
If there is feedback you wish to provide which falls outside of this survey or if any part of the survey raises concerns or questions for you please do not hesitate to contact us at CFSA either the Executive Officer, Julia Langrehr at julia.langrehr@cfsa.org.au or the Community Support Coordinator, Karla Matousek at karla@cfsa.org.au 



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* 1. How old are you

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* 2. What year did you receive your organ transplant?

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* 3. Please rank the most useful communication method CFSA has used to engage with you in the past 12 months.

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* 4. In 2020 we are delivering the Rose Report as an email to your inbox. If you received the May edition via email, please tick the boxes that apply to you.

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* 5. Which CFSA services have you used in the past 12 months?

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* 6. Please rank how these services have helped you in the past 12 months.  If you have accessed no services please tell us why.

  I have not accessed this service  Unhelpful  Slightly helpful Very helpful  Made a significant difference 
Fitness Subsidy
Emergency Financial Assistance (Utility Bills)
Pharmaceutical Subsidy
Subsidies for Equipment and Equipment Parts (Nebuliser etc)
Meals/Cleaning during HITH
TV Subsidy in RAH

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* 7. Are there any areas you would like to see CFSA supporting which are not currently available?

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* 8. From your personal experience, please describe the main issues and challenges that you are currently facing.

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* 9. What do you think the priorities should be for CFSA resources?

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* 10. What are the issues that impact you that you feel are national issues and should be addressed by the CF Federation?

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* 11. The following questions relate to the care you receive at Royal Adelaide Hospital.  Your responses will be collated and shared with your care team at the RAH to assist them in improving levels of care for their CF patients.  

If you receive no services at the RAH at all please skip to Question 17.

  Disagree Agree  I don't know
I know who to call if I am concerned about my treatment
I know what to do if I become unwell at any time
I am confident that I receive the most up to date treatment options available for organ transplant recipients in the world
I feel like the Transplant and CF teams know and understand me
I have not experienced delays in accessing care when I need it
I would find it useful to have a method of providing feedback about the CF service directly to my  treatment team

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* 12. Do you agree that outpatient clinics are well coordinated at the RAH?

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* 13. Please rate your experiences with accessing the pharmacy and/or processing of scripts?

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* 14. Are you confident that Infection Control is managed well at the RAH?

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* 15. How would you rate your experiences during inpatient stays at the RAH?

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* 16. what could be done differently to improve your inpatient experience?

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* 17. If you do not attend the RAH for some or all of your post transplant care, which hospital to you attend?

If you do attend the RAH please skip to Question 19.

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* 18. Please tell us why you have chosen to attend a different hospital for your post transplant care.  If you would like us to pass on any anonymous feedback to your hospital, please write that here.

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* 19. Is there anything else you would like to tell us?

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* 20. Thank you for taking the time to complete this survey.  Your responses are valuable to us and we appreciate the time you have taken to answer all of the questions.
If you would like to go in the draw for a $50 Gift Voucher, please write your name and email in the box below.

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