Welcome! Seminar Series: International comparisons about mortality data in people with intellectual disabilities

Seminar 2 Welcome! Recap on the purpose of the seminar series. Focus on making mortality data internationally comparative. Future seminar topics and dates.

Welcome! Introductions. We would love to know who you are and where you are from. Could you fill in the quiz to let us know please? Thank you! Quiz: Q1: Are you: Academic working on issues related to mortality of people with ID Academic interested in the issues Practitioner working with people with ID Practitioner interested in the issue Policy-maker with responsibility for ID policy issues Policy-maker interested in the issue Academic and policy-maker Academic and practitioner Policy-maker and practitioner Other Q2. Are you from: USA UK Scandinavia Other Europe Australia/New Zealand

Contributing to the webinar Who has attended a webinar before? Can you let us know please by filling in the quiz? To ask a question, please use the chat box in the bottom right hand corner of the screen. Quiz Have you attended a webinar before? Yes No Have you run a webinar before?

Recap: the seminar series Key aims of the seminar series: To bring together academics, policy makers and practitioners from different countries. To share experiences of measuring, comparing and using mortality data about people with ID. To advance research into mortality of people with ID, sufficient to allow us to make inferences at national and international levels. To support the development of practical initiatives/strategies to address common concerns identified by the data. This is the second webinar. The first webinar last October discussed what we currently know about mortality of people with intellectual disabilities. Key objectives of the seminar series: Agree a set of definitions and benchmarks to support collection of internationally comparable data. Share experiences about collecting mortality data, including practical and ethical issues faced. Provide a community of support for academics, practitioners and policy-makers. Support academics writing funding applications to undertake work about mortality of people with ID. Provide initial international comparisons about premature mortality in people with ID, sufficient for the development of practical strategies to address this.

Webinar 2 Making mortality data internationally comparative.

To cover in this webinar 1. Common definitions. 2. The collection and/or availability of: a. Individual level data. Tier 1 Tier 2 Tier 3 b. Population level data.

Common definitions: ID ID is understood to refer to a state of: significant limitations of cognitive (reasoning, learning, problem solving) and adaptive (conceptually, socially and practically) functioning which affect areas of major life activity and the capacity to live independently as an adult which originated before the person reached adulthood (18 - 22 years of age) and which are likely to be life-long in nature. People with ID have a wide range of degrees of impairment. Only some will be known or in receipt of services. How does this differ from IDD? Should we be looking at ID or IDD?

Common definitions: IDD IDD is understood to be characterised by: significant limitations in both intellectual functioning and in adaptive behaviour. limitations cover many everyday social and practical skills. It originated before the age of 18. American Association on Intellectual and Developmental Disabilities (AAIDD) definition of intellectual and developmental disability

Decision point 1: ID or IDD? Are our definitions of ID and IDD sufficiently similar that they capture the same population? Please complete the quiz to let us know your thoughts. Quiz: Are our definitions of ID and IDD sufficiently similar that they capture the same population? Yes – they cover the same population No – the populations are different Not sure I would like to add a comment please.

Individual level data: Tier 1 Tier 1 data would be essential core data to be collected by all countries. We suggest that this should be: Year of death. Gender. Age at death. We need to decide on the age range for inclusion, and the age bands to be used.

Age at death To consider: It can be more difficult to identify if a child has ID/IDD in the early stages of their development – especially before the age of 4. The age of ‘adulthood’ varies internationally. Mortality data sometimes uses the age band 15-34. Ideally data would be collected in individual years to be able to manipulate it into age bands – but this might not be possible. Need to decide what the minimum age for inclusion will be. Should we aim to collect child and adult data --- or just data for adults? Need to decide what threshold to use for adulthood – 18/21? Also need to decide if there should be a maximum age for inclusion. Need to decide what age bands to use if individual years cannot be collected -

Decision point 2 We propose: Prioritising the collection of data about adults age 18 and over (with no maximum limit). Collecting data for children if possible. Collecting data in one-year age bands. Collapsing data in to the age bands 18-34; 35-59; 60-74; 75 and over. Do you agree with this? Please complete the quiz to let us know your thoughts. Quiz: Does the proposal about age and age banding seem reasonable? Yes – this seems reasonable to aim for No Not sure I would like to add a comment please.

Individual level data: Tier 2 Tier 2 data would be useful to collect, as the second priority for individual level, internationally comparable information. We suggest that this should be: Cause of death. Severity of ID/IDD.

Cause of death data To consider: Availability of ICD-10 coding for underlying cause of death. There is likely to be some inaccuracy in the reporting of cause of deaths. There may be country-specific conventions in how certain deaths are reported. It could be useful to look at the whole sequence of conditions from underlying to immediate cause of death.

Decision point 3 We propose: Using ICD-10 codes for underlying cause of death. Do you agree with this? Please complete the quiz to let us know your thoughts. Quiz: Does the proposal about using ICD-10 codes for underlying cause of death seem reasonable Yes No Not sure I would like to add a comment please.

Severity of ID/IDD To consider All degrees of ID/IDD are points on a spectrum, and there are no clear dividing lines between them. Severity was previously determined by IQ tests, but this tells us little about the support needs of an individual. It can be helpful to have an indication of whether a person has mild, moderate, severe or profound/multiple learning disabilities.

Action point! Please look at the attached paper: Estimating the severity of a person’s ID/IDD and send in your comments to: Pauline.Heslop@Bristol.ac.uk Thank you!

Individual level data: Tier 3 Tier 3 data would be interesting to have, but not essential for internationally comparable information. This might include: Ethnicity. Usual place of residence.

Question Is there any other individual-level data that we should consider collecting at this stage? Please complete the quiz to let us know your thoughts. Question Is there any other individual-level data that we should consider collecting at this stage? Yes No Not sure I would like to add a comment please.

Population level data In order to calculate SMRs, some population level data is required for each country/area population: Number of deaths that year of people with ID/IDD by age/sex. Number of deaths that year for whole population by age/sex. Number of people with ID/IDD that year by age/sex. Number of people in population that year by age/sex.

Decision point 4 We propose that comparing SMR would be a helpful way to draw international comparisons. Do you agree with this? Please complete the quiz to let us know your thoughts. Quiz: Do you agree that comparing SMR would be a helpful way to draw international comparisons. Yes No Not sure I would like to add a comment please.

Summary of discussions Common definition of ID/IDD. Tier 1 individual level data: Year of death; Gender; Age at death. Tier 2 individual level data: Cause of death; Severity of ID/IDD. Tier 3 individual level data: Ethnicity; Usual place of residence. Population level data: Sufficient to calculate SMR.

Next seminar July 2015 Sharing experiences of collecting mortality data about people with ID/IDD. Ethical and legal issues: the Canadian experience. Coordinator: Dr Helene Ouellette-Kuntz, Associate Professor, Queen’s University, Ontario, Canada.

Thank you for joining us! Contact details: Pauline.Heslop@bristol.ac.uk Twitter hashtag #ID_mort Website: http://www.bristol.ac.uk/sps/seminars/international/ We would like to thank the Economic and Social Research Council (ESRC) UK for their support in funding this seminar series.