Yoshi - Unmet Needs - Patient and Family

Questionnaire

The INCA Questionnaire on Unmet Needs intends to identify how well patient needs are met.

Please work through the following questions completing them as fully as possible. Please note that comment boxes have a limited number of characters.

The questionnaire does not require you to enter your name or contact details, and as such all data will be anonymous. A conclusions report with recommendations on Unmet Needs will be published on INCA's website.

The CLOSING DATE of this questionnaire is 2nd March 2017

Thank you for your participation!

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* 1. What country do you live in

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* 2. Are you a patient?

Yes

If you answered Yes, please proceed directly to question 4

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* 3. Are, or were, you a family member or friend of a patient?

Yes

If you are a family member or friend of a patient, and not a patient yourself, please answer the following questions as they relate to the patient that you know.

If you are neither a patient nor a family member or friend of a patient, please do not answer this questionnaire.

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* 4. What specific type of neuroendocrine tumor has been diagnosed? (tick more than one if applicable)

Appendiceal

Colon

Don't know

Duodenal

Gastric

Gastrinomas

Glucagonomas

Goblet Cell Carcinoma

Insulinomas

Lung

Merkel Cell Carcinoma (skin NET)

Multiple Endocrine Neoplasia (MEN 1 & 2)

Neuroendocrine tumor of unknown origin/primary

Ovarian

Pancreatic

Pheochromocytoma/paraganglioma (PPGL)

Rectal

Small Intestine

Somatostatinomas

Thymic

VIPomas

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* 5. What is your age?

Under 18

18-29

30-39

40-49

50-59

60-69

70 and over

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* 6. What was your age at the time of your first NET diagnosis?

Under 18

18-29

30-39

40-49

50-59

60-69

70 and over

Questions about standards of care

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* 7. When you were first diagnosed, were you given useful information on neuroendocrine tumours?

	My needs were fully met	My needs were mostly met	My needs were sometimes met	My needs were often not met	My needs were not at all met
Information about my medical condition	Information about my medical condition My needs were fully met	Information about my medical condition My needs were mostly met	Information about my medical condition My needs were sometimes met	Information about my medical condition My needs were often not met	Information about my medical condition My needs were not at all met
Information about treatment options	Information about treatment options My needs were fully met	Information about treatment options My needs were mostly met	Information about treatment options My needs were sometimes met	Information about treatment options My needs were often not met	Information about treatment options My needs were not at all met
Information about your doctor or multidisciplinary team	Information about your doctor or multidisciplinary team My needs were fully met	Information about your doctor or multidisciplinary team My needs were mostly met	Information about your doctor or multidisciplinary team My needs were sometimes met	Information about your doctor or multidisciplinary team My needs were often not met	Information about your doctor or multidisciplinary team My needs were not at all met
Information about patient association(s) relevant to you and their contact details	Information about patient association(s) relevant to you and their contact details My needs were fully met	Information about patient association(s) relevant to you and their contact details My needs were mostly met	Information about patient association(s) relevant to you and their contact details My needs were sometimes met	Information about patient association(s) relevant to you and their contact details My needs were often not met	Information about patient association(s) relevant to you and their contact details My needs were not at all met
Information how to manage the condition e.g. diet, exercise, symptom control	Information how to manage the condition e.g. diet, exercise, symptom control My needs were fully met	Information how to manage the condition e.g. diet, exercise, symptom control My needs were mostly met	Information how to manage the condition e.g. diet, exercise, symptom control My needs were sometimes met	Information how to manage the condition e.g. diet, exercise, symptom control My needs were often not met	Information how to manage the condition e.g. diet, exercise, symptom control My needs were not at all met
Information about relevant clinical trials	Information about relevant clinical trials My needs were fully met	Information about relevant clinical trials My needs were mostly met	Information about relevant clinical trials My needs were sometimes met	Information about relevant clinical trials My needs were often not met	Information about relevant clinical trials My needs were not at all met
Information about NET research	Information about NET research My needs were fully met	Information about NET research My needs were mostly met	Information about NET research My needs were sometimes met	Information about NET research My needs were often not met	Information about NET research My needs were not at all met
Information about psychological care	Information about psychological care My needs were fully met	Information about psychological care My needs were mostly met	Information about psychological care My needs were sometimes met	Information about psychological care My needs were often not met	Information about psychological care My needs were not at all met

Other (please specify and write how well needs were met)

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* 8. Who gave you the information?

Healthcare professional

Patient organisation

Medical funding or insurance provider

Friend or family member

Other (please specify)

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* 9. Did you find for yourself or request information regarding NET e.g. information about your condition, diagnosis and treatment?

Yes

If you answered No to this question please proceed directly to Question 12

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* 10. Where did you find or request information from?

Healthcare professional website (e.g. European Neuroendocrine Tumour Society ENETS, North American Neuroendocrine Tumor Society NANETS, a hospital’s website)

Healthcare professional or treating hospital – printed information

Patient association website

Patient association - printed information

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* 11. How well did the information you found or requested meet your needs?

	My needs are fully met	My needs are mostly met	My needs are sometimes met	My needs are often not met	My needs are not at all met	Not applicable to me
Healthcare professional website (e.g. ENETS, NANETS, a hospital’s website)	Healthcare professional website (e.g. ENETS, NANETS, a hospital’s website) My needs are fully met	Healthcare professional website (e.g. ENETS, NANETS, a hospital’s website) My needs are mostly met	Healthcare professional website (e.g. ENETS, NANETS, a hospital’s website) My needs are sometimes met	Healthcare professional website (e.g. ENETS, NANETS, a hospital’s website) My needs are often not met	Healthcare professional website (e.g. ENETS, NANETS, a hospital’s website) My needs are not at all met	Healthcare professional website (e.g. ENETS, NANETS, a hospital’s website) Not applicable to me
Healthcare professional or treating hospital – printed information	Healthcare professional or treating hospital – printed information My needs are fully met	Healthcare professional or treating hospital – printed information My needs are mostly met	Healthcare professional or treating hospital – printed information My needs are sometimes met	Healthcare professional or treating hospital – printed information My needs are often not met	Healthcare professional or treating hospital – printed information My needs are not at all met	Healthcare professional or treating hospital – printed information Not applicable to me
Patient association website	Patient association website My needs are fully met	Patient association website My needs are mostly met	Patient association website My needs are sometimes met	Patient association website My needs are often not met	Patient association website My needs are not at all met	Patient association website Not applicable to me
Patient association - printed information	Patient association - printed information My needs are fully met	Patient association - printed information My needs are mostly met	Patient association - printed information My needs are sometimes met	Patient association - printed information My needs are often not met	Patient association - printed information My needs are not at all met	Patient association - printed information Not applicable to me

Other (please specify and write how well needs are met)

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* 12. Do you have a personal home care-giver that is someone who, for example, helps with personal care, hygiene, food shopping and preparation?

Yes

Not applicable - I don't need one

If you answered Not applicable to this question, please proceed directly to question 15

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* 13. How much time, per week, is a personal care giver available for you?

0 hours

1-10 hours

11-20 hours

21-30 hours

More than 30 hours

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* 14. Who is the care provided by and how well are your needs met?

	My needs are fully met	My needs are mostly met	My needs are sometimes met	My needs are often not met	My needs are not at all met	Not applicable to me
A friend or family member	A friend or family member My needs are fully met	A friend or family member My needs are mostly met	A friend or family member My needs are sometimes met	A friend or family member My needs are often not met	A friend or family member My needs are not at all met	A friend or family member Not applicable to me
A professional home care-giver who is not your NET doctor	A professional home care-giver who is not your NET doctor My needs are fully met	A professional home care-giver who is not your NET doctor My needs are mostly met	A professional home care-giver who is not your NET doctor My needs are sometimes met	A professional home care-giver who is not your NET doctor My needs are often not met	A professional home care-giver who is not your NET doctor My needs are not at all met	A professional home care-giver who is not your NET doctor Not applicable to me
A combination of both	A combination of both My needs are fully met	A combination of both My needs are mostly met	A combination of both My needs are sometimes met	A combination of both My needs are often not met	A combination of both My needs are not at all met	A combination of both Not applicable to me

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* 15. Other than your specific NET treatments, how well do you feel that your health is supported by your healthcare providers, in terms of the following needs?

	My needs are fully met	My needs are mostly met	My needs are sometimes met	My needs are often not met	My needs are not at all met	Not applicable to me
Psychological care	Psychological care My needs are fully met	Psychological care My needs are mostly met	Psychological care My needs are sometimes met	Psychological care My needs are often not met	Psychological care My needs are not at all met	Psychological care Not applicable to me
Information how to manage the condition e.g. diet, exercise, symptom control	Information how to manage the condition e.g. diet, exercise, symptom control My needs are fully met	Information how to manage the condition e.g. diet, exercise, symptom control My needs are mostly met	Information how to manage the condition e.g. diet, exercise, symptom control My needs are sometimes met	Information how to manage the condition e.g. diet, exercise, symptom control My needs are often not met	Information how to manage the condition e.g. diet, exercise, symptom control My needs are not at all met	Information how to manage the condition e.g. diet, exercise, symptom control Not applicable to me
Diagnosis of mental health conditions	Diagnosis of mental health conditions My needs are fully met	Diagnosis of mental health conditions My needs are mostly met	Diagnosis of mental health conditions My needs are sometimes met	Diagnosis of mental health conditions My needs are often not met	Diagnosis of mental health conditions My needs are not at all met	Diagnosis of mental health conditions Not applicable to me
Treatment for diagnosed mental health conditions	Treatment for diagnosed mental health conditions My needs are fully met	Treatment for diagnosed mental health conditions My needs are mostly met	Treatment for diagnosed mental health conditions My needs are sometimes met	Treatment for diagnosed mental health conditions My needs are often not met	Treatment for diagnosed mental health conditions My needs are not at all met	Treatment for diagnosed mental health conditions Not applicable to me
Support with continuing work and/or educations	Support with continuing work and/or educations My needs are fully met	Support with continuing work and/or educations My needs are mostly met	Support with continuing work and/or educations My needs are sometimes met	Support with continuing work and/or educations My needs are often not met	Support with continuing work and/or educations My needs are not at all met	Support with continuing work and/or educations Not applicable to me
Treatment for pain	Treatment for pain My needs are fully met	Treatment for pain My needs are mostly met	Treatment for pain My needs are sometimes met	Treatment for pain My needs are often not met	Treatment for pain My needs are not at all met	Treatment for pain Not applicable to me
Personal care/hygiene	Personal care/hygiene My needs are fully met	Personal care/hygiene My needs are mostly met	Personal care/hygiene My needs are sometimes met	Personal care/hygiene My needs are often not met	Personal care/hygiene My needs are not at all met	Personal care/hygiene Not applicable to me
Palliative care	Palliative care My needs are fully met	Palliative care My needs are mostly met	Palliative care My needs are sometimes met	Palliative care My needs are often not met	Palliative care My needs are not at all met	Palliative care Not applicable to me

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* 16. Do you utilize any of the following technologies as part of your care, and if so how helpful are they to your treatment/care?

	My needs are fully met	My needs are mostly met	My needs are sometimes met	My needs are often not met	My needs are not at all met	I don't use it
Telephone clinics	Telephone clinics My needs are fully met	Telephone clinics My needs are mostly met	Telephone clinics My needs are sometimes met	Telephone clinics My needs are often not met	Telephone clinics My needs are not at all met	Telephone clinics I don't use it
Web/Skype clinics	Web/Skype clinics My needs are fully met	Web/Skype clinics My needs are mostly met	Web/Skype clinics My needs are sometimes met	Web/Skype clinics My needs are often not met	Web/Skype clinics My needs are not at all met	Web/Skype clinics I don't use it
Software or apps	Software or apps My needs are fully met	Software or apps My needs are mostly met	Software or apps My needs are sometimes met	Software or apps My needs are often not met	Software or apps My needs are not at all met	Software or apps I don't use it
Social media	Social media My needs are fully met	Social media My needs are mostly met	Social media My needs are sometimes met	Social media My needs are often not met	Social media My needs are not at all met	Social media I don't use it
Special equipment or devices for monitoring of your condition	Special equipment or devices for monitoring of your condition My needs are fully met	Special equipment or devices for monitoring of your condition My needs are mostly met	Special equipment or devices for monitoring of your condition My needs are sometimes met	Special equipment or devices for monitoring of your condition My needs are often not met	Special equipment or devices for monitoring of your condition My needs are not at all met	Special equipment or devices for monitoring of your condition I don't use it

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* 17. How much do you agree with the following statements regarding your care?

	My needs are fully met	My needs are mostly met	My needs are sometimes met	My needs are often not met	My needs are not at all met	No opinion
I am given all the information and explanations that I need about my condition and my treatment options	I am given all the information and explanations that I need about my condition and my treatment options My needs are fully met	I am given all the information and explanations that I need about my condition and my treatment options My needs are mostly met	I am given all the information and explanations that I need about my condition and my treatment options My needs are sometimes met	I am given all the information and explanations that I need about my condition and my treatment options My needs are often not met	I am given all the information and explanations that I need about my condition and my treatment options My needs are not at all met	I am given all the information and explanations that I need about my condition and my treatment options No opinion
I am able to find for myself all of the information I need about my condition and my treatment options	I am able to find for myself all of the information I need about my condition and my treatment options My needs are fully met	I am able to find for myself all of the information I need about my condition and my treatment options My needs are mostly met	I am able to find for myself all of the information I need about my condition and my treatment options My needs are sometimes met	I am able to find for myself all of the information I need about my condition and my treatment options My needs are often not met	I am able to find for myself all of the information I need about my condition and my treatment options My needs are not at all met	I am able to find for myself all of the information I need about my condition and my treatment options No opinion
I feel like I am truly a partner alongside my healthcare professionals (nurses, doctors etc) in treatment and care decisions	I feel like I am truly a partner alongside my healthcare professionals (nurses, doctors etc) in treatment and care decisions My needs are fully met	I feel like I am truly a partner alongside my healthcare professionals (nurses, doctors etc) in treatment and care decisions My needs are mostly met	I feel like I am truly a partner alongside my healthcare professionals (nurses, doctors etc) in treatment and care decisions My needs are sometimes met	I feel like I am truly a partner alongside my healthcare professionals (nurses, doctors etc) in treatment and care decisions My needs are often not met	I feel like I am truly a partner alongside my healthcare professionals (nurses, doctors etc) in treatment and care decisions My needs are not at all met	I feel like I am truly a partner alongside my healthcare professionals (nurses, doctors etc) in treatment and care decisions No opinion
The healthcare financial system where I live facilitates an appropriate standard of care for me	The healthcare financial system where I live facilitates an appropriate standard of care for me My needs are fully met	The healthcare financial system where I live facilitates an appropriate standard of care for me My needs are mostly met	The healthcare financial system where I live facilitates an appropriate standard of care for me My needs are sometimes met	The healthcare financial system where I live facilitates an appropriate standard of care for me My needs are often not met	The healthcare financial system where I live facilitates an appropriate standard of care for me My needs are not at all met	The healthcare financial system where I live facilitates an appropriate standard of care for me No opinion

Questions about access to appropriate NET care

A multidisciplinary team is a group of health care workers who are members of different disciplines (e.g. oncologist, endocrinologist, nurse, nutritionist, etc.), each providing specific services to the patient.

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* 18. Is your care managed by a multidisciplinary team?

Yes

Don't know

If you have answered No or Don't Know to this question, please proceed directly to Question 21

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* 19. How often are you in contact with a member or members of your multidisciplinary team?

Weekly

Monthly

Every 3 months

Every 6 months

Once per year

Less regularly

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* 20. Do you feel that you have appropriate, regular, contact with the multidisciplinary team?

My needs are fully met

My needs are mostly met

My needs are sometimes met

My needs are often not met

My needs are not at all met

I have no opinion

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* 21. Is there a diagnostic option that is not available to you, that you feel and/or have discussed with your healthcare professional or multidisciplinary team as possibly being appropriate?

Yes

Don't know

If you have answered No or Don't Know to this question, please proceed directly to Question 23

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* 22. Which diagnostic option is not available to you?

Computerized tomography (CT) scan

Fluorodeoxyglucose (FDG)-positron emission tomography (PET) scan

Gallium-68-Dotatate PET/CT scan

Magnetic resonance imaging (MRI) scan

MIBG radiopharmaceutical scan

Ultrasound

Other (please specify)

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* 23. Is there a treatment option that is not available to you, that you feel and/or have discussed with your healthcare professional or multidisciplinary team as possibly being appropriate?

Yes

Don't know

If you have answered No or Don't Know to this question, please proceed directly to Question 26

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* 24. Which treatment or treatments are not available to you?

Chemotherapy

Genetic testing/precision medicine

Interferon

Liver embolization

PRRT

Somatostatin analogues

Surgery

Thermal ablation

Transplantation

Other (please specify)

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* 25. If you know why the treatment is not available to you, please tick the reason(s)

My health insurance does not cover this treatment

The state healthcare system does not make this treatment available

I have to pay out of pocket for the treatment, and I cannot afford it

I live too far away from a centre that provides the treatment

My physician will not refer me for the treatment

I am considered an inappropriate age for this treatment

Other (please specify)

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* 26. What is the furthest you ever had to travel for treatment or consultation with a NET specialist?

Under 20km/12.5miles

Up to 50km/31miles

Up to 100km/62 miles

Up to 200km/124 miles

Up to 300km/186 miles

More than 300km/186 miles

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* 27. Did you ever travel to a different country for treatment?

Yes

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* 28. How important a role do patient associations, either local, national or international, play in helping you get access to appropriate NET care?

Very important

Somewhat important

No opinion

Not very important

Not at all important

Questions about research and clinical trials

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* 29. How important is it that patients are involved in research design?

Very important

Somewhat important

No opinion

Not very important

Not at all important

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* 30. Do you feel that patients are involved enough in research design?

Yes

No opinion

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* 31. How important is patient involvement in specific aspects of research?

	Very important	Somewhat important	Not very important	Not at all important	No opinion
The overall strategy and direction of research funding in the field of NETs	The overall strategy and direction of research funding in the field of NETs Very important	The overall strategy and direction of research funding in the field of NETs Somewhat important	The overall strategy and direction of research funding in the field of NETs Not very important	The overall strategy and direction of research funding in the field of NETs Not at all important	The overall strategy and direction of research funding in the field of NETs No opinion
The design of specific research initiatives	The design of specific research initiatives Very important	The design of specific research initiatives Somewhat important	The design of specific research initiatives Not very important	The design of specific research initiatives Not at all important	The design of specific research initiatives No opinion
Interpreting the results of a research initiative to ensure published results will be understood by patients	Interpreting the results of a research initiative to ensure published results will be understood by patients Very important	Interpreting the results of a research initiative to ensure published results will be understood by patients Somewhat important	Interpreting the results of a research initiative to ensure published results will be understood by patients Not very important	Interpreting the results of a research initiative to ensure published results will be understood by patients Not at all important	Interpreting the results of a research initiative to ensure published results will be understood by patients No opinion
Setting priorities for research	Setting priorities for research Very important	Setting priorities for research Somewhat important	Setting priorities for research Not very important	Setting priorities for research Not at all important	Setting priorities for research No opinion
Putting NET rare cancer research on equal footing with other major forms of cancer research	Putting NET rare cancer research on equal footing with other major forms of cancer research Very important	Putting NET rare cancer research on equal footing with other major forms of cancer research Somewhat important	Putting NET rare cancer research on equal footing with other major forms of cancer research Not very important	Putting NET rare cancer research on equal footing with other major forms of cancer research Not at all important	Putting NET rare cancer research on equal footing with other major forms of cancer research No opinion
Clinical trials to improve current treatments, test new ones	Clinical trials to improve current treatments, test new ones Very important	Clinical trials to improve current treatments, test new ones Somewhat important	Clinical trials to improve current treatments, test new ones Not very important	Clinical trials to improve current treatments, test new ones Not at all important	Clinical trials to improve current treatments, test new ones No opinion

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* 32. Please rank the following types of research in order of their importance to you, where 1 is most important and 7 least important

Basic science to understand what causes tumors to form and grow as a pathway to discovering a cure

Basic or translational research focused on longer survival

Research focused on improving quality of life; controlling/managing symptoms

Accurate, minimally invasive disease monitoring

Earlier, more accurate diagnosis

Clinical trials to improve current treatments, test new ones

Development of national and international NET patient registries

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* 33. Have you ever been enrolled in a neuroendocrine tumor clinical trial?

Yes

If you have answered No to this question, please proceed directly to question 36

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* 34. How many neuroendocrine tumor clinical trials have you been enrolled in?

One

Two

Three

More than three

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* 35. Has enrolment in clinical trials made a positive contribution to your treatment regime?

Very positive

Mostly positive

Somewhat positive

Neither positive nor negative

Somewhat negative

Mostly negative

Very negative

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* 36. Do you research clinical trials that are relevant to you?

Yes

If you answered No to this question, please proceed to the end of the questionnaire and click Done

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* 37. Where did you find out about relevant clinical trials and how well did the information meet your needs?

	My needs are fully met	My needs are mostly me	My needs are sometimes met	My needs are often not met	My needs are not at all met	I don't use this source of information
Healthcare professional(s)	Healthcare professional(s) My needs are fully met	Healthcare professional(s) My needs are mostly me	Healthcare professional(s) My needs are sometimes met	Healthcare professional(s) My needs are often not met	Healthcare professional(s) My needs are not at all met	Healthcare professional(s) I don't use this source of information
Patient organisation(s)	Patient organisation(s) My needs are fully met	Patient organisation(s) My needs are mostly me	Patient organisation(s) My needs are sometimes met	Patient organisation(s) My needs are often not met	Patient organisation(s) My needs are not at all met	Patient organisation(s) I don't use this source of information
Printed information	Printed information My needs are fully met	Printed information My needs are mostly me	Printed information My needs are sometimes met	Printed information My needs are often not met	Printed information My needs are not at all met	Printed information I don't use this source of information
Online (clinicaltrials.gov etc)	Online (clinicaltrials.gov etc) My needs are fully met	Online (clinicaltrials.gov etc) My needs are mostly me	Online (clinicaltrials.gov etc) My needs are sometimes met	Online (clinicaltrials.gov etc) My needs are often not met	Online (clinicaltrials.gov etc) My needs are not at all met	Online (clinicaltrials.gov etc) I don't use this source of information