Sarcoidosis treatment and outcomes: what is most important to you?

Introduction

A sarcoidosis treatment guideline is being developed by a European Respiratory Society (ERS) working group and is due to be published at the end of 2018. The guideline will be used by doctors and other healthcare professionals to help them treat people with sarcoidosis in the best way possible.

To develop the guideline, the working group will look at the evidence from previous research studies which have looked at sarcoidosis treatment. The evidence for different types of sarcoidosis treatment and its outcomes (end results) will be assessed through a review of the most relevant research studies and recommendations will be made based on the strength of this evidence.

The outcomes that are most important to patients will also be considered to make sure that the recommendations in the guideline take into account aspects of treatment which matter to patients. For example: an individual might have a worsening of their chest (shown on an X-ray) and the doctor prescribes steroids to improve their cough. The patient may choose not to take the steroids because the side effects (possible nausea, sleep problems, mood swings etc) are worse for them than the cough. In that situation, the patient might rate quality of life as more important than imaging.

To help with this please complete the question below. Your responses are anonymous and will feed into the activities of the ERS working group to ensure that patient views are considered.

Question Title

* 1. Please rate each of the following outcomes as to how important they are to you.
The outcomes listed below have a lot of overlap, for example an improved lung function test will probably mean improved functionality and quality of life, so try to think about each outcome in isolation when you rate it. w 0

	1 - Extremely important	2 - Very important	3 - Moderately important	4 - Slightly important	5 - Not important at all	6 - No opinion
Quality of life: Definition: the level of well-being you feel. This might include a standard of health (physical and/or mental), comfort and life satisfaction or other factors important to you	Quality of life: Definition: the level of well-being you feel. This might include a standard of health (physical and/or mental), comfort and life satisfaction or other factors important to you 1 - Extremely important	Quality of life: Definition: the level of well-being you feel. This might include a standard of health (physical and/or mental), comfort and life satisfaction or other factors important to you 2 - Very important	Quality of life: Definition: the level of well-being you feel. This might include a standard of health (physical and/or mental), comfort and life satisfaction or other factors important to you 3 - Moderately important	Quality of life: Definition: the level of well-being you feel. This might include a standard of health (physical and/or mental), comfort and life satisfaction or other factors important to you 4 - Slightly important	Quality of life: Definition: the level of well-being you feel. This might include a standard of health (physical and/or mental), comfort and life satisfaction or other factors important to you 5 - Not important at all	Quality of life: Definition: the level of well-being you feel. This might include a standard of health (physical and/or mental), comfort and life satisfaction or other factors important to you 6 - No opinion
Functionality: Definition: the level at which your body (or specific parts) is able to work and function as normal. For example; to breathe better, have more energy, see better, ache less	Functionality: Definition: the level at which your body (or specific parts) is able to work and function as normal. For example; to breathe better, have more energy, see better, ache less 1 - Extremely important	Functionality: Definition: the level at which your body (or specific parts) is able to work and function as normal. For example; to breathe better, have more energy, see better, ache less 2 - Very important	Functionality: Definition: the level at which your body (or specific parts) is able to work and function as normal. For example; to breathe better, have more energy, see better, ache less 3 - Moderately important	Functionality: Definition: the level at which your body (or specific parts) is able to work and function as normal. For example; to breathe better, have more energy, see better, ache less 4 - Slightly important	Functionality: Definition: the level at which your body (or specific parts) is able to work and function as normal. For example; to breathe better, have more energy, see better, ache less 5 - Not important at all	Functionality: Definition: the level at which your body (or specific parts) is able to work and function as normal. For example; to breathe better, have more energy, see better, ache less 6 - No opinion
Pulmonary function tests: Definition: Non-invasive tests that show how well your lungs are working. Different tests can measure lung volume, capacity, rates of flow and gas exchange	Pulmonary function tests: Definition: Non-invasive tests that show how well your lungs are working. Different tests can measure lung volume, capacity, rates of flow and gas exchange 1 - Extremely important	Pulmonary function tests: Definition: Non-invasive tests that show how well your lungs are working. Different tests can measure lung volume, capacity, rates of flow and gas exchange 2 - Very important	Pulmonary function tests: Definition: Non-invasive tests that show how well your lungs are working. Different tests can measure lung volume, capacity, rates of flow and gas exchange 3 - Moderately important	Pulmonary function tests: Definition: Non-invasive tests that show how well your lungs are working. Different tests can measure lung volume, capacity, rates of flow and gas exchange 4 - Slightly important	Pulmonary function tests: Definition: Non-invasive tests that show how well your lungs are working. Different tests can measure lung volume, capacity, rates of flow and gas exchange 5 - Not important at all	Pulmonary function tests: Definition: Non-invasive tests that show how well your lungs are working. Different tests can measure lung volume, capacity, rates of flow and gas exchange 6 - No opinion
Blood tests: Definition: Taking a sample of your blood to help with diagnosis (including ACE test)	Blood tests: Definition: Taking a sample of your blood to help with diagnosis (including ACE test) 1 - Extremely important	Blood tests: Definition: Taking a sample of your blood to help with diagnosis (including ACE test) 2 - Very important	Blood tests: Definition: Taking a sample of your blood to help with diagnosis (including ACE test) 3 - Moderately important	Blood tests: Definition: Taking a sample of your blood to help with diagnosis (including ACE test) 4 - Slightly important	Blood tests: Definition: Taking a sample of your blood to help with diagnosis (including ACE test) 5 - Not important at all	Blood tests: Definition: Taking a sample of your blood to help with diagnosis (including ACE test) 6 - No opinion
Imaging: Definition: X-rays and scans e.g. chest X-ray, CT scan, PET scan which take photographic or digital pictures of your body. They can be used to help diagnose a lung condition and to monitor how the condition progresses	Imaging: Definition: X-rays and scans e.g. chest X-ray, CT scan, PET scan which take photographic or digital pictures of your body. They can be used to help diagnose a lung condition and to monitor how the condition progresses 1 - Extremely important	Imaging: Definition: X-rays and scans e.g. chest X-ray, CT scan, PET scan which take photographic or digital pictures of your body. They can be used to help diagnose a lung condition and to monitor how the condition progresses 2 - Very important	Imaging: Definition: X-rays and scans e.g. chest X-ray, CT scan, PET scan which take photographic or digital pictures of your body. They can be used to help diagnose a lung condition and to monitor how the condition progresses 3 - Moderately important	Imaging: Definition: X-rays and scans e.g. chest X-ray, CT scan, PET scan which take photographic or digital pictures of your body. They can be used to help diagnose a lung condition and to monitor how the condition progresses 4 - Slightly important	Imaging: Definition: X-rays and scans e.g. chest X-ray, CT scan, PET scan which take photographic or digital pictures of your body. They can be used to help diagnose a lung condition and to monitor how the condition progresses 5 - Not important at all	Imaging: Definition: X-rays and scans e.g. chest X-ray, CT scan, PET scan which take photographic or digital pictures of your body. They can be used to help diagnose a lung condition and to monitor how the condition progresses 6 - No opinion
Adverse events: Definition: An undesired or harmful effect from a drug or medical intervention such as steroid treatment; also known as side effects.	Adverse events: Definition: An undesired or harmful effect from a drug or medical intervention such as steroid treatment; also known as side effects. 1 - Extremely important	Adverse events: Definition: An undesired or harmful effect from a drug or medical intervention such as steroid treatment; also known as side effects. 2 - Very important	Adverse events: Definition: An undesired or harmful effect from a drug or medical intervention such as steroid treatment; also known as side effects. 3 - Moderately important	Adverse events: Definition: An undesired or harmful effect from a drug or medical intervention such as steroid treatment; also known as side effects. 4 - Slightly important	Adverse events: Definition: An undesired or harmful effect from a drug or medical intervention such as steroid treatment; also known as side effects. 5 - Not important at all	Adverse events: Definition: An undesired or harmful effect from a drug or medical intervention such as steroid treatment; also known as side effects. 6 - No opinion
Survival: Definition: The length of time you will continue to live. Please note that 60% of sarcoidosis cases resolve in 2-5 years with death rates approximately 5%.	Survival: Definition: The length of time you will continue to live. Please note that 60% of sarcoidosis cases resolve in 2-5 years with death rates approximately 5%. 1 - Extremely important	Survival: Definition: The length of time you will continue to live. Please note that 60% of sarcoidosis cases resolve in 2-5 years with death rates approximately 5%. 2 - Very important	Survival: Definition: The length of time you will continue to live. Please note that 60% of sarcoidosis cases resolve in 2-5 years with death rates approximately 5%. 3 - Moderately important	Survival: Definition: The length of time you will continue to live. Please note that 60% of sarcoidosis cases resolve in 2-5 years with death rates approximately 5%. 4 - Slightly important	Survival: Definition: The length of time you will continue to live. Please note that 60% of sarcoidosis cases resolve in 2-5 years with death rates approximately 5%. 5 - Not important at all	Survival: Definition: The length of time you will continue to live. Please note that 60% of sarcoidosis cases resolve in 2-5 years with death rates approximately 5%. 6 - No opinion

Question Title

Question Title

* 2. If there are any outcomes important to you and not included above please list them here: w 0