PARATHYROID TRANSPLANTATION FOR TREATMENT OF

POST-THYROIDECTOMY HYPOPARATHYROIDISM

Patients’ needs and attitudes towards a new treatment

Part A: The severity of your condition

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* 1. The cause of your hypoparathyroidism is...

Injury to parathyroid glands during previous thyroid surgery

Injury to parathyroid glands during previous parathyroid surgery

Idiopathic (no cause known)

Genetic syndrome

Please provide any other details you think are relevant...

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* 2. For how many years have you suffered with this condition?

Less than 1 year

1-3 years

3-5 years

5-10 years

Over 10 years

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* 3. In the last 6 months, how many times have you needed emergency admission to hospital for treatment of severe symptoms or extremely low calcium levels?

Weekly

Monthly

Occasionally (please detail the number of visits)

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* 4. Due to the loss of your parathyroid glands, what do you think your overall quality of life is (consider personal, social and occupational aspects)?
[1 = Worst quality of life; 9 = Best quality of life]

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* 5. For each of these symptoms, tell us how severe you consider them to be...
[0 = Least Severe; 5 = Most Severe]

	0	1	2	3	4	5
Numbness or tingling in hands/feet/lips	Numbness or tingling in hands/feet/lips 0	Numbness or tingling in hands/feet/lips 1	Numbness or tingling in hands/feet/lips 2	Numbness or tingling in hands/feet/lips 3	Numbness or tingling in hands/feet/lips 4	Numbness or tingling in hands/feet/lips 5
Muscle cramps	Muscle cramps 0	Muscle cramps 1	Muscle cramps 2	Muscle cramps 3	Muscle cramps 4	Muscle cramps 5
Headaches	Headaches 0	Headaches 1	Headaches 2	Headaches 3	Headaches 4	Headaches 5
Seizures	Seizures 0	Seizures 1	Seizures 2	Seizures 3	Seizures 4	Seizures 5
Bone pain	Bone pain 0	Bone pain 1	Bone pain 2	Bone pain 3	Bone pain 4	Bone pain 5
Fatigue	Fatigue 0	Fatigue 1	Fatigue 2	Fatigue 3	Fatigue 4	Fatigue 5
Generally low sense of well-being	Generally low sense of well-being 0	Generally low sense of well-being 1	Generally low sense of well-being 2	Generally low sense of well-being 3	Generally low sense of well-being 4	Generally low sense of well-being 5

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* 6. For each of these symptoms, please tell us how often you experience them...

	Never	Intermittently	Most of the time	All of the time
Numbess or tingling sensations in hands/feet/lips	Numbess or tingling sensations in hands/feet/lips Never	Numbess or tingling sensations in hands/feet/lips Intermittently	Numbess or tingling sensations in hands/feet/lips Most of the time	Numbess or tingling sensations in hands/feet/lips All of the time
Muscle cramps	Muscle cramps Never	Muscle cramps Intermittently	Muscle cramps Most of the time	Muscle cramps All of the time
Headaches	Headaches Never	Headaches Intermittently	Headaches Most of the time	Headaches All of the time
Seizures	Seizures Never	Seizures Intermittently	Seizures Most of the time	Seizures All of the time
Bone pain	Bone pain Never	Bone pain Intermittently	Bone pain Most of the time	Bone pain All of the time
Fatigue	Fatigue Never	Fatigue Intermittently	Fatigue Most of the time	Fatigue All of the time
General sense of low well-being	General sense of low well-being Never	General sense of low well-being Intermittently	General sense of low well-being Most of the time	General sense of low well-being All of the time

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* 7. Do you have other symptoms (i.e. not mentioned in the previous question) that could be due to hypoparathyroidism? If yes, please give details…

Please detail your daily treatment to control the low calcium levels (name of drug, dose/day)

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* 8. Calcium supplements:

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* 9. Vitamin D supplements:

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* 10. Others- please detail:

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* 11. How much do you find having to take this treatment interferes with your daily life?
[1 = Doesn't interfere with daily life; 9 = Interferes a lot with daily life]

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* 12. In general, would you say your health is?

Excellent

Very good

Good

Fair

Poor

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* 13. Compared to one year ago, how would you rate your health now?

Much better than one year ago

Somewhat better than one year ago

About the same as one year ago

Somewhat worse than one year ago

Much worse than one year ago

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* 14. During the past 4 weeks, to what extent has your health (i.e. the symptoms of hypoparathyroidism) interfered with normal social activities with family, friends, neighbours, or groups?

Not at all

Slightly

Moderately

Quite a bit

Extremely

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* 15. During the past 4 weeks, to what extent has your health interfered with your normal work (including both work outside the home and housework)?

Not at all

Slightly

Moderately

Quite a bit

Extremely

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* 16. Does your health now limit you in these activities? If so, how much?

	Yes, limited a lot	Yes, limited a little	No, not limited at all
Vigorous activities, such as running, heavy lifting objects or participating in strenuous sports	Vigorous activities, such as running, heavy lifting objects or participating in strenuous sports Yes, limited a lot	Vigorous activities, such as running, heavy lifting objects or participating in strenuous sports Yes, limited a little	Vigorous activities, such as running, heavy lifting objects or participating in strenuous sports No, not limited at all
Moderate activities such as moving a table, pushing a vacuum cleaner or playing golf	Moderate activities such as moving a table, pushing a vacuum cleaner or playing golf Yes, limited a lot	Moderate activities such as moving a table, pushing a vacuum cleaner or playing golf Yes, limited a little	Moderate activities such as moving a table, pushing a vacuum cleaner or playing golf No, not limited at all
Light activities such as climbing a flight of stairs, walking to shops or doing the washing-up	Light activities such as climbing a flight of stairs, walking to shops or doing the washing-up Yes, limited a lot	Light activities such as climbing a flight of stairs, walking to shops or doing the washing-up Yes, limited a little	Light activities such as climbing a flight of stairs, walking to shops or doing the washing-up No, not limited at all

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* 1. The cause of your hypoparathyroidism is...

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* 2. For how many years have you suffered with this condition?

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* 3. In the last 6 months, how many times have you needed emergency admission to hospital for treatment of severe symptoms or extremely low calcium levels?

Question Title

* 4. Due to the loss of your parathyroid glands, what do you think your overall quality of life is (consider personal, social and occupational aspects)? [1 = Worst quality of life; 9 = Best quality of life]

Question Title

* 5. For each of these symptoms, tell us how severe you consider them to be...[0 = Least Severe; 5 = Most Severe]

Question Title

* 6. For each of these symptoms, please tell us how often you experience them...

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* 7. Do you have other symptoms (i.e. not mentioned in the previous question) that could be due to hypoparathyroidism? If yes, please give details…

Question Title

* 8. Calcium supplements:

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* 9. Vitamin D supplements:

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* 10. Others- please detail:

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* 11. How much do you find having to take this treatment interferes with your daily life? [1 = Doesn't interfere with daily life; 9 = Interferes a lot with daily life]

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* 12. In general, would you say your health is?

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* 13. Compared to one year ago, how would you rate your health now?

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* 14. During the past 4 weeks, to what extent has your health (i.e. the symptoms of hypoparathyroidism) interfered with normal social activities with family, friends, neighbours, or groups?

Question Title

* 15. During the past 4 weeks, to what extent has your health interfered with your normal work (including both work outside the home and housework)?

Question Title

* 16. Does your health now limit you in these activities? If so, how much?

* 4. Due to the loss of your parathyroid glands, what do you think your overall quality of life is (consider personal, social and occupational aspects)?
[1 = Worst quality of life; 9 = Best quality of life]

* 5. For each of these symptoms, tell us how severe you consider them to be...
[0 = Least Severe; 5 = Most Severe]

* 11. How much do you find having to take this treatment interferes with your daily life?
[1 = Doesn't interfere with daily life; 9 = Interferes a lot with daily life]