Premature mortality in ASD Tatja Hirvikoski Associate Professor/Neuropsychologist Center for Neurodevelopmental Disorders at Karolinska Institutet (KIND) Head of Research, Development and Education Habilitation & Health Stockholm

tatja.hirvikoski@ki.se 2018-11-20 Tatja Hirvikoski

Previous studies on mortality in ASD Denmark Isager et al (1999) Mouridsen et al (2008) Sweden Gillberg et al (2010) USA Shavelle et al (2001) Pickett et al (2006) Bilder et al (2012) wwww.stockholmsmuseum.se 2018-11-20 Tatja Hirvikoski

Main research questions Is there an increased risk for premature all-cause mortality in ASD? Gender differences Differences between ASD + ID versus ASD - ID Which ICD categories (if any) are significant specific causes of death in ASD? 2018-11-20 Tatja Hirvikoski

Premature mortality in ASD An epidemiological study of all individuals with ASD in Swedish Patient Register A control group from Total Population Register, matched for sex, age and county of residence Data linked to Causes of Death Register Odds ratios (OR) and 95% Confidence Intervals (CI) calculated for all-cause mortality and cause- specific mortality using conditional logistic regression analysis Hirvikoski, Mittendorfer-Rutz, Boman, Larsson, Lichtenstein & Bölte (2016) British Journal of Psychiatry. 2018-11-20 Tatja Hirvikoski

Odds ratio (OR) Odds = ratio between ”event” and ”non-event” e.g. 1 suicide/99.999 non-suicide Odds ratio is a comparison of two groups Odds in ASD group Odds in control group OR = 1 no group difference OR > 1 higher risk in the ASD group OR = 2 two times higher risk in the ASD group Important! Relative risk ≠ absolute numbers 2018-11-20 Tatja Hirvikoski

Study groups 2018-11-20 Tatja Hirvikoski

All-cause mortality Risk for premature mortality 2.56 times higher in ASD Increased risk for both LF and HF ASD; highest in LF ASD Gender differences: HF ASD group: higher risk for males LF ASD group: higher risk for females 2018-11-20 Tatja Hirvikoski

Specific causes of death categorized according to ICD-10 Infections Neoplasms (cancer) Endocrine Mental and behavioural disorders Diseases of the nervous system Diseases of the circulatory system Diseases of the respiratory system Diseases of the digestive system Diseases of the genitourinary system Congenital malformations Symptoms, signs, and abnormal findings not elsewhere classified External causes of morbidity and mortality: Intentional self-harm/suicide was analysed separately from other external causes of death Other causes of death: In this category we included ICD-10 chapters with only a few cases 2018-11-20 Tatja Hirvikoski

Specific causes of death Increased risk in all analyzed categories (except infections) for Total ASD group LF ASD HF ASD www.paying.se 2018-11-20 Tatja Hirvikoski

Differences between LF ASD and HF ASD (specific causes of death) LF ASD higher risk than HF ASD: Mental and behavioral Nervous system Circulatory system Respiratory system Digestive system Congenital malformations HF ASD higher risk than LF ASD: Suicide 2018-11-20 Tatja Hirvikoski

Suicide 2013-02-05

Suicide: general risk and protective factors RISK FACTORS PROTECTIVE FACTORS Male Older (and younger) Single Previous suicide attempt Repeated suicide attempt Suicide attempt with high intention to die Hopelessness Sustance abuse, e.g. alcohol Depression (60-90% of people who commit suicide) and other psychiatric diagnoses (shizophrenia, bipolar disorder, personality disorder) Recent serious life events Support from partner, family and other significant others Ability to maintain close relationships Being responsible for children, family members and others Personal values against suicide (e.g. religon) Being afraid of pain or body injury General satisfaction with life Good coping ability Therapeutic contact including counselling, support etc. 2018-11-20 Tatja Hirvikoski

Summary Significantly increased mortality risk in ASD Higher risk in LF ASD compared to HF ASD Highest risk: Females with LF ASD Increased risk in all analyzed causes of death (except infections) Differences between LF ASD and HF ASD depending on cause of death High suicide risk in individuals with HF ASD Hirvikoski et al, 2016, British Journal of Psychiatry 2018-11-20 Tatja Hirvikoski

Clinical implications Better knowledge of ASD needed in all medical specialties Focus on health and life style factors Focus on help seeking skills Develop and follow clinical guidelines for suicidal behaviours If needed: local guidelines Improve co-operation between different actors within health care organizations as well as in society in general Martin Rinman 2018-11-20 Tatja Hirvikoski

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Thnx... For your attention! Co-authors: Ellenor Mittendorfer-Rutz, Marcus Boman, Henrik Larsson, Paul Lichtenstein & Sven Bölte