Social Interactions and Focus Questionnaire FAQs

Your questionnaire and the web link to it that we have sent to you by email are specific to you; this is so that we can add the data from the questionnaire to other data that you have provided previously. This means that it is very important that your questionnaire is only completed by you. Sometimes participants share email addresses or devices with other members of their household, and this has led to questionnaires being completed by someone other than the intended recipient. We use your date of birth to double-check that the questionnaire has been completed by the correct person before releasing the data to researchers. We need to ask for your full date of birth because a partial date of birth may not distinguish you from someone you share an email address or device with (if you both have the same month and year of birth).

We ask you to complete an identity check each time you start the questionnaire in case an error was made the first time or in case someone else (e.g. someone you share an email address with) started or attempts to complete your questionnaire.

If you realise that you have completed a questionnaire intended for another UK Biobank participant (for example, someone who shares an email address with you), please let our Participant Resource Centre know by calling 0800 0 276 276 (Monday to Friday, 9am-5pm).

Because of the global interest in the work of UK Biobank, questionnaires developed for UK Biobank are shared with researchers around the world for use in their own research. So that researchers can choose which sets of questions they ask in their research studies (rather than having to use a full UK Biobank questionnaire), the questionnaires are split up into sections (modules).

This is the way that our online questionnaires are designed. You have to click the ‘Save/continue’ button at the bottom of each page to ensure that your answers on that page are saved. If you go back to the previous page without having clicked this button, your answers on the current page will not be saved and you will need to enter the information again.

We provide a comments box at the end of the questionnaire for you to provide us with extra information if you would like to do so. If an issue comes up that you would like to comment on as you are working through the questionnaire, please make a note of it and include it in the comments box at the end. Please note, however, that any comments you leave will not be systematically reviewed. If you would like to tell us something that requires our immediate attention or action, please call our Participant Resource Centre on 0800 0 276 276 (Monday to Friday, 9am-5pm).

Please click on the ‘Show question numbers’ button (situated towards the bottom of the page, after the block of questions) to display the question numbers.

Please open the section and then simply click ‘Save/continue’.

Please check that you are using the correct personal details and Participant ID (this can be found on most pieces of correspondence that we send to you). Please make sure that you are using the first letter of your surname rather than that of your first name. If you are still unsuccessful, please contact our Participant Resource Centre at ukbiobank@ukbiobank.ac.uk or on 0800 0 276 276.

In order for the questionnaire to be marked as ‘finished’ by our systems, every section of the questionnaire - including the final section, which is called the ‘End page’ - must be marked as complete. It is possible that this has not been done, so we advise that you return to the questionnaire and check this. Even if you don’t add any comments on the ‘End page’, you will need to click ‘Save/continue’.  Alternatively, you might have accidentally completed the questionnaire belonging to another UK Biobank participant with whom you share an email address (for example, your spouse or partner). Please double-check that you have used the correct web link that is unique to you, which was included in the email which we addressed specifically to you.

We are not able to provide participants with a copy of the questionnaire. However, this will be available on the Showcase section of our website once the questionnaire data have been released to researchers (https://biobank.ndph.ox.ac.uk/showcase/).

Yes please. Having information from people who do not have problems with their social interactions or their level of focus helps researchers to understand why some people develop issues and others do not.

The questionnaire will guide you through the questions based on the responses that you give to earlier questions. This means that you will be asked questions that are tailored to your experiences.

It can sometimes feel difficult to know whether a skill is ‘average’ or falls in the average range. Please do your best to place yourself compared to people in the general population. Average means you are generally like most people your age. For questions such as these, if you have felt similar to most of the other people (e.g. in your local community or in your workplace), you are likely to be average. If you have noticed that you struggle a little or have a slightly harder time than the people around you in different settings (e.g. friends, colleagues, people in your community), you might be slightly below average. If you have great difficulty, you may be below average or far below average. Alternatively, if you have an easier time with a skill compared to the people you know, you may be slightly above, above or far above average.

These questions are based upon a questionnaire that is used widely by researchers and health professionals around the world, and that does ask about similar issues in different ways to develop a complete understanding of these issues. To enable us to fully understand your feelings and behaviour, please answer all of the questions in this section even if you feel that they are repetitive.

These questions aim to explore the characteristics of your behaviour and ability to focus when not controlled by medication. If you have had different periods of your adult life when you have and have not been taking medication, please answer according to the time in your life when you were not taking medication.

You are likely to have experienced problems with inattention or distractibility if you have difficulties related to several of the following: giving close attention to detail; engaging in and sustaining attention on tasks; listening when spoken to directly; following through on instructions; remembering, organising and keeping track of tasks; ignoring internally distracting thoughts; and ignoring external noises and distractions. These characteristics are explored in questions AAL1A-I.

If you had these problems in your adult life while you were still in education or were working, please think back to that time and answer the question to the best of your recollection. If you have had these problems for a long period of your adult life but were not in work or education, please consider whether they would be likely to interfere with tasks/activities/hobbies in your daily life that are similar to work or educational assignments (like organising paperwork or balancing your bank account).

If you have never had any such relationships (with family, friends or social contacts) and consider that social isolation was due to the problems being asked about, please select the option “Very often or always”. If you had these problems at a time during your adult life when you did have relationships, please think back to that time and answer the question to the best of your recollection.

This question is aimed at identifying whether you experience feelings of ‘internal restlessness’, for example feeling as if you want to keep moving/doing things even when you are not supposed to move around or move your body. This feeling is different from involuntary movements that you may experience due to a physical health condition such as Parkinson’s disease, Huntington’s disease, severe tremors or restless leg syndrome. If you experience involuntary movements but not feelings of ‘internal restlessness’, please answer this question as “Average”. If you are not sure, please select “Prefer not to answer”.

You are likely to have experienced problems with physical restlessness or impulsive behaviour if you have difficulties related to several of the following: sitting still without fidgeting; staying seated appropriately in situations when sitting is expected; controlling internal feelings of restlessness or a need for constant activity; engaging in activities quietly; controlling a need to talk excessively; not blurting out answers or interrupting people’s activities or conversations; and waiting for your turn. These characteristics are explored in questions AAL5A-I.

ADHD refers to attention deficit hyperactivity disorder. It is a neurodevelopmental condition, defined by a persistent pattern of inattention and distractibility and/or hyperactive, restless and impulsive behaviour that interferes with someone’s day-to-day functioning. ADHD symptoms tend to develop in childhood but can persist into adulthood. Some adults might also have experienced adolescent or later onset of ADHD characteristics. Research indicates that ADHD may relate to inherited differences in how the brain is organised and how it processes information.

Please visit www.nhs.uk/conditions/attention-deficit-hyperactivity-disorder-adhd/ and https://aadduk.org to find out more detail about the characteristics of ADHD.

ADD refers to attention deficit disorder. Both ADD and hyperkinetic disorder are outdated terms for what health professionals now call ADHD, but a diagnosis of ADD rather than ADHD might have been given in the past if hyperactivity was not present.

Please answer the questions telling us how you feel and behave most of the time in your life.

Please do your best to choose the response category that most accurately reflects your feelings or behaviour in general. If you feel unable to do this, please select “Prefer not to answer”.

These questions form part of a questionnaire that is used widely by researchers and health professionals around the world. To enable us to fully understand your feelings and behaviour, please answer all of the questions in this section even if you feel that they are repetitive.

Please think back over your answers to the previous section of questions, which explored aspects of your social interactions, approach to life and way of thinking. Please then consider whether any of these patterns in your behaviour and thinking might be causing issues for you in the areas that we are asking about in questions FI1a-FI1f.

If you had these problems in your adult life while you were still in education or were working, please think back to that time and answer the question to the best of your recollection. If you have had these problems for a long period of your adult life but were not in work or education, please consider whether they would be likely to interfere with tasks/activities/hobbies in your daily life that are similar to work or educational assignments (like organising paperwork or balancing your bank account).

If you have never had any such relationships (with family, friends or social contacts) and consider that social isolation was due to the issues being asked about, please select the option “Very often or always”. If you had these issues at a time during your adult life when you did have relationships, please think back to that time and answer the question to the best of your recollection.

Autism is a neurodevelopmental condition with lifelong effects that can be recognised from early childhood. It affects the way a person communicates and how they experience the world around them. It is considered a spectrum condition, which means that it varies in severity; while autistic people share some similar characteristics, they are also all different from one other.

Please visit www.nhs.uk/conditions/autism/what-is-autism and www.autism.org.uk to find out more detail about the characteristics of autism. 

These questions form part of a questionnaire that is used widely by researchers and health professionals around the world to explore irritability and angry feelings. Please take your best guess at how you think you compare to other people based on what you have seen and experienced in your interactions with others.

If you had these problems in your adult life while you were still in education or were working, please think back to that time and answer the question to the best of your recollection. If you have had these problems for a long period of your adult life but were not in work or education at the time, please consider whether they would be likely to interfere with tasks/activities/hobbies in your daily life that are similar to work or educational assignments (e.g. being tolerant or patient during meetings).

If your loss of sense of smell is permanent, please select “Disagree” or “Strongly disagree” in response to these questions. If this is a temporary loss, for example because you currently have a cold, please answer the question according to your usual sense of smell.

If your loss of sense of taste is permanent, please select “Disagree” or “Strongly disagree” in response to these questions. If this is a temporary loss, for example because you currently have a cold, please answer the question according to how your usual sense of taste would be.

Please do your best to imagine if you might be able to tell the difference between two very similar brands of the same savoury food, even if it is not the particular food mentioned here. This question forms part of a well-established questionnaire that explores sensory perception, so it would be helpful if you could answer all of the questions in this section. If you do not feel able to answer this question, please select “Prefer not to answer”.

Please do your best to imagine if you might be able to tell the difference between two very similar brands of the same sweet food, even if it is not the particular food mentioned here. This question forms part of a well-established questionnaire that explores sensory perception, so it would be helpful if you could answer all of the questions in this section. If you do not feel able to answer this question, please select “Prefer not to answer”.

It is not possible to return to this comments section once you have clicked on the ‘Save/continue’ button and finished the questionnaire. So please take your time once you reach this final section of the questionnaire to reflect back on the information you have kindly provided us with to ensure that you have told us everything that you would like to.

Any comments you leave will not be systematically reviewed. If you would like to tell us something that requires our immediate attention or action, please call our Participant Resource Centre on 0800 0 276 276 (Monday to Friday, 9am-5pm).

Any information you provide will be saved and could be evaluated by researchers in the future (for example, using techniques such as ’natural language processing’). However, UK Biobank does not currently have the resources to undertake this analysis.