Survey Questionnaire

Consent & Information Form

Cushing’s syndrome and disease. A Doctor of Philosophy study.

As part of this PhD study, a survey is being undertaken by a member of the Pituitary Foundation UK who has experienced both *Cushing’s syndrome and/or *disease. The prime aim of this survey is to establish the main challenges which present themselves pre- and post-remission of having been diagnosed with Cushing’s.

In order to fully explore these challenges that you have faced due to having been diagnosed with Cushing’s and to assess your health-related quality of life during and after the on-set of your Cushing’s, the attached questionnaire has been developed.

This is an invitation to participate in this study and contribute to the existing body of knowledge. The research findings will be reported in this PhD thesis and also, if accepted, be published in future endocrinology and radiology journals and presented at appropriate conferences. Please note that a Code system will be used in order to protect your identity. On completion please submit to the email address on Page 14 by Friday 17 th April 2020.

Please X YES or NO in response to the following questions.

1. Have you read and understood the above information? YES. NO

2. Have you been able to ask questions and had sufficient information? YES

NO .

3. Do you understand that you can withdraw from this study anytime and, without giving a reason for your withdrawal? YES

NO

4. Your responses will be anonymized. Do you therefore give permission for members

of the research team to analyze and quote your anonymous responses? YES NO

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Study Code Number.

5. Do you wish to give consent to take part in this survey? YES NO If your answer is YES, please complete the following questionnaire.Cushing’ Syndrome and Disease Quality of Life Questionnaire

*Please note that the definition of Cushing’ syndrome is: A metabolic disorder caused by the overproduction of corticosteroid hormones by the adrenal cortex. The definition of Cushing’s disease is: A condition in which the pituitary gland releases too much adrenocorticotrophic hormone. Distribution and collation of the results: Courtesy of the Pituitary Foundation UK.Responsibility for the interpretation and reporting of results: Dr M McBride, University of Cumbria.

You are asked to answer the questions with an X, N/A or write your answer.

Section 1

1. What is your age?

2. What is your gender? Female Male Other

3. Where do you live? (Country)?

If you cannot answer the following questions, please type N/A.

4. What is your Occupation or are you retired?

5. Are you in full or part-time education?

6. Have you had to give up work or your studies due to your Cushing’s?

YES NO

6a) If the answer is YES for question 6, please answer question 7 of this section.

7. What type of disability(s) i.e. physical or psychological caused by your Cushing’s, has forced you to give up work or your studies?

8. Has your Cushing’s impacted on your social life and if YES how?

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YES NO

9. Has your illness changed your personal relationships? YES NO

9a) If so please state the reasons why.

10. Do you feel that your close family and friends understand the nature of your

Cushing’s illness and how it has impacted on your QoL? YES NO

10a) Please give the reasons for your answers, i.e. whichever answer that you may have chosen.

11. Did you find that your endocrine team involved your family during your diagnostic and treatment journey?

YES NO

11a) If the answer is NO then please explain the reasons why you feel that this was the case.

11b) If you answered 11a), how do you feel that this could have been improved?

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Section 2

The following section asks questions related to your diagnosis of Cushing’s syndrome and/or disease.

12. What year were you diagnosed with Cushing’s syndrome?

13. Have you also been diagnosed with Cushing’s disease? YES NO

14. If you answered YES to question 13, when were you diagnosed?

15. How long did it take to diagnose these condition(s)? (months/years). Cushing’s syndrome?

Cushing’s disease?

16. a). Are you in remission? YES NO b) If your answer is YES, how long? (months/years).

c) Have you had a recurrence? YES NO

d) If your answer is YES how long after your treatment did this occur and have you had more than one reoccurrence? months/ years Number

17.Who diagnosed your Cushing’s syndrome/disease? Please X one or more of the boxes provided.

a) General Practitioner b) Endocrinologist

c) Neurosurgeon d) Physician(s)

e) Yourself f) Family or Friend

g) Another, (Example-nurse).

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h) If you have answered (d or g) please name the discipline of the physician, (Example GP, endocrinologist), Health Professional, (Example, nurse) or another person.

18. How many physicians did you consult prior to your diagnosis?

19. How long did it take to be referred to the endocrine team?

20. The list on page 6 and 7 shows the signs and symptoms that you may have experienced prior to being diagnosed.

Please X any of these that you may have experienced in Box A.

Please X Box B if you are still experiencing any of these.

Physical Signs/Symptoms A B

Round face (Moon face).

Excess of hair (Excess Facial hair in women).

Female Balding.

Weight gain (Example-Abdominal region).

Skin bruising.

High Blood Pressure.

Raised Cholesterol level.

Headaches.

Plethora.

Osteoporosis or fracture

Proximal muscle weakness.

Loss of hearing, smell, taste.

Backache.

Dorsal fat pad.

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Fatigue.

Decreased libido.

Menstrual changes

Infertility

Prone to infections. Inflammatory conditions (Example, IBS).

Cardiovascular conditions.

Eye problems.

Insomnia.

Bodily Pain. Psychological/Psychiatric Symptoms A B

Depression.

Cognitive impairment.

Severe psychological/psychiatric disorders.

Emotional problems

Social Isolation. .

Other. 20a) If you have answered Other, then please name the condition(s) and if you continue to experiencing them.

20b) If you are symptom-free post-treatment for Cushing’s, how long has it taken for this to occur? Months Years

21 Have you been hospitalised due to Cushing’s or any of the medical conditions you

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have identified in question 20?

YES NO

21a) If your answer is YES, how many hospital confinements? 21b) If your answer is YES in 21a), which medical condition(s)?

22. Did you have a series of blood, urine, salivary tests taken prior to your diagnosis?

YES NO

22a) If you know which tests(s) you were given please name them below, (Examples tests: Dexamethasone tablets, Urine sample, Salivary sample). If you are unsure of which type of tests you received please write UNSURE.

23. Did you have a Computed Tomography (CT) scan taken prior to your diagnosis for your adrenal glands?

YES NO

24 Did you have a Magnetic Resonance Imaging (MRI) scan taken prior to your diagnosis for your pituitary gland?

YES NO

24a) If you know of any other type of diagnostic imaging tests you have received during your diagnostic journey then please explain below. (Examples: Ultrasound (US), Positron Emission Tomography (PET), Radio-nuclide Imaging (RNI), Bilateral Petrosal Sinus Sampling (BPSS), Adrenal Venous Sampling (AVS), X-rays example: Chest and Skeletal.)

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25. Have you ever been diagnosed with any other condition (s) associated with Cushing’s syndrome or disease? (Examples: Addison’s Disease, Nelson’s Syndrome, Carney Complex, Diabetes Mellitus, Diabetes Insipidus).

YES NO

25a) If YES, please name the condition below.

Section 3

This section asks questions which are related to your treatment of Cushing’s syndrome. Please answer questions 26, if you have received adrenalectomy surgery. If you have not had surgery, please proceed to question 27.

26. Did you have adrenal surgery to treat your Cushing’s syndrome? Please√ the box with your answer.

YES NO

26a) If your answer is YES, have you had one adrenal gland removed (Left or Right), or both adrenal glands (i.e. bi-lateral adrenalectomy), or just part of one gland removed (i.e. partial adrenalectomy)? If you are unsure of what type of surgery you received please write UNSURE.

26b) If you have had adrenal surgery, what type of surgical procedure did you have?

26c) i) Laparoscopic excision

ii) Single surgical incision.

iii) Did this cure your Cushing’s syndrome? YES NO

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27. Do you take hormone replacement steroids/glucocorticoids for your Cushing’s?

YES NO

If your answer to question 27 is YES, please answer the following questions. If NO then please proceed to question 31.

28. When did you commence taking medication for your Cushings?

29. Which glucocorticoids are you taking? (Example-Hydrocortisone).

30. Please X to answer the following statements that you agree with:

I am no longer on glucocorticoids. I am attempting to reduce my glucocorticoid medication. I have been advised that I may always have to take

glucocorticoids. I am unsure as to how long glucocorticoid medication will be

prescribed.

31. Are you prescribed other medication in relation to your Cushing’s?

YES NO

31a) If your answer is YES, please give the details of your medication below.

32. Are you meeting regularly with the endocrinology team for check-ups? YES NO

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32a) If so, how regularly?

33. Have you been referred to other physicians due to long-lasting ailments as a result of Cushing’s syndrome?

YES NO

33a) If your answer is YES, please list below.

34. Have you had pituitary surgery for Cushing’s disease? YES NO

a) Which year did you have your surgery?

b) Have you had to have repeat surgery? YES NO

c) If YES, how many times?

35. Have you had Radiotherapy treatment following your adrenal gland or pituitary gland surgery?

YES NO

35a) If YES please specify with a X: Adrenal Pituitary Both

35b) Please X if you know the answer to the following question:

i) Which of the following type of Radiotherapy treatment did you receive?

LINAC Proton Beam Gamma Knife

ii) How many treatments did you have?

iii) Did you have any side effects? YES NO 35c) If your answer is YES, please give details below.

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36. Did you receive Chemotherapy treatment? YES NO

36b) If so specify the reason, i.e. following adrenal and/or pituitary surgery or instead of surgery.

36c) What side effects if any did you experience?

37.Did your endocrine team suggest joining a support group? (Example: Pituitary Foundation, UK).

YES NO

37a) If YES have you found this to be of help in supporting your illness by exchanging views with other Cushing’s members and support group staff?

YES NO

37b) Please explain your reasons for your answer to 37 a) below.

38. Do you feel that there is sufficient public awareness of Cushing syndrome and disease?

YES NO

38a) Please give the reason(s) for your answer.

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38b) If your answer is NO, can you suggest how public awareness could be improved?

Section 4

39. Measurement of your Quality of Life (QOL), prior to, during and after the diagnosis of Cushing’s syndrome and/or Cushing’s disease.

The final question asks you to rate how your Cushing’s syndrome and/or Cushing’s disease affects or have affected your QoL

On a scale 1-5 please X one box to indicate the degree to which you have found that Cushing’s has affected or not affected your QoL. Poor Health (1) will indicate that Cushing’s DID affect your QoL.

Very Good Health (5) indicates that Cushing’s DID NOT affect your QoL If you have X 2,3 or 4, you may feel that your chosen numerical figure indicates the degree to which you feel Cushing’s has affected your QoL

39a) This part of the question asks you to rate your QoL, prior to your diagnosis.

1. Very Poor Health

2. Poor 3. Fair 4. Good 5. Very Good Health

39b) This part of the question asks you to rate how Cushing’s affected your QoL,

during your treatment.

1.Very Poor Health

2. Poor 3. Fair 4. Good 5. Very Good Health

39c) This part of the question asks you to rate your current QoL.

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1.Very Poor Health

2. Poor 3. Fair 4. Good 5. Very Good Health

40. If you wish to give additional reason(s) for one or more of your answers, please explain them in the box below and any other comments you wish to include which you feel will be of benefit to this study.

Thank you for completing this survey questionnaire and if you feel that there is further information you would like to share with me, then please do not hesitate to contact me at the following email address: dr.margotmcbride@gmail.com

Thank you also to the Pituitary Foundation UK for their support in this research project.

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