Scottish Health Survey 2018: questionnaire changes report

6. New Topics

6.1. Childcare Use

NHS Health Scotland Public Health Science Directorate requested that 'a question is added from 2018 onwards to ask parents with pre-school aged children in the household what kind of formal childcare they use.' This request is related to the extension of free pre-school childcare in Scotland from 2020 onwards. Inclusion of the question now 'would ensure that two years of pre-intervention data is collected before the policy is rolled-out nationally'.

It was felt that, although free childcare could arguably reduce finance-related stress for parents, this was stretching the remit of SHeS. As a result, this question will not be included in the survey

6.2. Palliative and End of Life Care

In their consultation response, Marie Curie argued for the inclusion of survey questions relating to Palliative and End of Life Care. They argued that 'Scotland does not currently collect and analyse enough data to show the number of people who are living with a terminal illness and those with a palliative care need. There is no data to analyse people's perception or awareness of their terminal diagnosis. There is very limited or no data collected around patients and/or carer experience for palliative and end of life care and bereavement support.'

Marie Curie recommended the inclusion of a section on end of life care in the survey, which "should include identifying the number of people surveyed with a terminal illness, caring for someone with a terminal illness at present or had experience of caring for someone with a terminal illness." As well as those who have been bereaved in the last 12 months. The questions should relate to experiences of access to services and the quality of care received across varied services.

This suggestion was discussed by the survey's Project Board, with the discussion serving to highlight the difficulties in reaching this population via the health survey. The survey only interviews individuals living in private households, so would not include individuals in hospital or living in care homes. The survey will also miss those who are too unwell to take part, so is unlikely to present a representative picture for those living with a life-limiting illness. In addition this would represent a significant number of additional questions. As a result, these questions have not been included at this time.

It would be possible to gather information in relation to those who are caring for a partner/child with a life-limiting illness. Existing questions relating to caring, could be supplemented by a question establishing whether the individual they provide care has a life-limiting illness. This will be considered for future versions of the questionnaire.

Marie Curie also suggested including questions on bereavement, relating to grief, loss and coping strategies. Whilst there are clear for links with mental health and wellbeing, this would represent a significant number of additional questions. We will consider this topic for inclusion in future years, although given the number of questions being discussed, this would be most likely to be a rotating module.

6.3. Musculoskeletal Health

Arthritis Research UK proposed including a range of questions relating to musculoskeletal health.

They highlighted that musculoskeletal conditions are 'the leading cause of long-standing illness in Scotland' and argued that poor musculoskeletal health often goes 'hand in hand' with other indicators of morbidity. Tackling poor musculoskeletal health would in the long-term 'both improve individual health outcomes and reduce the costs to society.' Good data was argued to be 'a key part of this.'

They suggested that consideration be given to the inclusion of questions on:

• the self-reporting of persistent musculoskeletal pain and experience of bone fractures;
• the use of certain prescription medications to identify people diagnosed with musculoskeletal health conditions;
• the contribution of musculoskeletal conditions to overall multimorbidity and frailty;
• self-management support and personalisation for people living with long term conditions;
• the use of assistive devices, home modifications and additional health and social care provision.

They also highlighted that it would be helpful for a number of topics to be included in future surveys:

• Chronic pain
• EuroQol/EQ-5D
• Musculoskeletal Health Questionnaire ( MSK-HQ)10
• Fractured or broken bones
• Use of social care

Given space constraints it is not possible to accommodate this range of new questions in the 2018 survey. However, we will consider the topics for future versions of the survey. Initial focus for inclusion is likely to be the Von Korff questions, which is a set of 7 questions allowing self-reporting of persistent musculoskeletal pain.

6.4. Adverse Childhood Experiences ( ACEs)

In response to the consultation, a joint proposal was made by a number of organisations to include questions relating to whether respondents had experienced Adverse Childhood Experiences ( ACEs). ACEs include experiences such as physical or sexual abuse, and living with individuals with mental illness or addiction problems. Evidence was provided suggesting that ACEs had a 'profound negative impact on health across the life course, and a range of other social, relational and employment outcomes.'

Discussions of the survey's Project Board have also served to demonstrate the growing support for the inclusion of this topic.

These questions have not been included in the 2018 questionnaire. Given the eventual questions will cover potentially distressing subject areas such as physical and sexual abuse and the death of loved ones, they raise ethical and administrative questions for the running of the survey. However, we are keen to include the topic and intend to consider the ethical issues, as well as testing potential questions, with a view to including the topic in 2019.

We will take as a starting point, the original CDC-Kaiser measures used in the first comprehensive ACE questionnaire, although this will involve some minor adaptations to suit a Scottish context (these will be based on the adaptations made for the English and Welsh studies already conducted). If ACE questions are included they are likely to be self-completion of some description (whether on the interviewer's laptop or via a paper booklet).

6.5. Organ Donation

There was a request from the policy area within the Scottish Government to add questions to the survey in relation to organ donation. This was in the context of on-going plans to move from an opt-in to an opt-out system of organ donation in Scotland.

The proposed questions were not specified in detail, but their purpose was to:

• Monitor discussions communicating wishes to loved ones around organ donation –If wishes are not communicated clearly then there is a high risk that loved ones will want to override decisions. The success of an opt-out system depends on conversations taking place.

• Allow prediction of behaviour under opt-out e.g. will individuals opt in on the register, do nothing or opt out.

• Monitor levels of awareness of the opt-out system Why is this important? Able to establish which groups to target awareness campaigns towards identify culture change over a longer period.

For topics such as this, which relate to attitudinal data, it was felt that other surveys, such as the Scottish Social Attitudes Survey, would be a more appropriate way of collecting the information. As a result, no questions relating to organ donation will be included in the 2018 questionnaire.

6.6. Food insecurity

In 2017 we added three questions on food insecurity to the survey. We will be reporting on these questions for the first time when we publish the annual results in September this year. The questions are filtered such that those who answer yes to the first question are asked the second question.

Amidst interest from wider stakeholders, there has been a request from the Scottish Government policy team to expand these questions to include an additional five. The three questions already included in the survey form part of the UN's Food Insecurity Experience Scale ( FIES). The additional questions (included in red below) would mean that the full FIES was being used in the survey.

During the last 12 months, was there a time when:

		Tick ONE box
		Yes	No
Q45	You were worried you would run out of food because of a lack of money or other resources?	1	2

		Tick ONE box
		Yes	No
Q46	You ate less that you thought you should because of a lack of money or other resources?	1	2

		Tick ONE box
		Yes	No
Q47	Your household ran out of food because of lack of money of other resources?	1	2

• You were unable to eat healthy and nutritious food because of lack of money of other resources?
• You ate only a few kinds of foods because of lack of money of other resources?
• You had to skip a meal because of lack of money of other resources?
• You were hungry but did not eat because of lack of money of other resources?
• You went without eating for a whole day because of lack of money of other resources?

In discussions, the survey's Project Board had remained uncertain as to whether food insecurity is a topic that should be covered in the health survey. Whilst there may be interest in linking the data with some health indicators, the main policy interest is the relationship between food insecurity and poverty. This would suggest another survey, such as the Scottish Household Survey or the Scottish Social Attitudes Survey may be a more useful place to include these questions in future.

Given these concerns, and the lack of survey space, the additional questions have not been included in the 2018 questionnaire. The existing three questions have been retained for 2018. This may be revisited for future years.

6.7. Oral gargle sample ( HPV)

The consultation generated a suggestion to introduce oral gurgle samples to the survey. This would be in order to assess oral HPV. However, SHeS does not otherwise test individuals for the presence of specific conditions or viruses and this suggestion would add to the length of the biological module. As a result, oral gurgle samples will not be introduced at this time.