So much of paediatrics, and medicine in general, is focussed on small experimental or observational studies. This series of posts takes the wider view; we’re talking here about some of the biggest and longest running studies that help us frame, measure and understand childhood through time and across the world.
Who and what was studied?
Kaiser Permanente is a large Medical Insurer in the USA; they collected data in two waves in the primary care setting with a view to describing the long-term relationship of childhood experiences to important medical and public health problems. The study initially rolled out in 1996 and 1997.
The study aimed to assess – both retrospectively and prospectively – the long-term impact of abuse and household dysfunction during childhood on disease risk factors and incidence, quality of life, health care utilization, and mortality for adults.
Here is the actual questionnaire:
Answer yes or no; all ACE questions refer to the respondent’s first 18 years of life.
Abuse
- Emotional abuse: A parent, stepparent, or adult living in your home swore at you, insulted you, put you down, or acted in a way that made you afraid that you might be physically hurt.
- Physical abuse: A parent, stepparent, or adult living in your home pushed, grabbed, slapped, threw something at you, or hit you so hard that you had marks or were injured.
- Sexual abuse: An adult, relative, family friend, or stranger who was at least 5 years older than you ever touched or fondled your body in a sexual way, made you touch his/her body in a sexual way, attempted to have any type of sexual intercourse with you.
Household Challenges
- Mother treated violently: Your mother or stepmother was pushed, grabbed, slapped, had something thrown at her, kicked, bitten, hit with a fist, hit with something hard, repeatedly hit for over at least a few minutes, or ever threatened or hurt by a knife or gun by your father (or stepfather) or mother’s boyfriend.
- Household substance abuse: A household member was a problem drinker or alcoholic or a household member used street drugs.
- Mental illness in household: A household member was depressed or mentally ill or a household member attempted suicide.
- Parental separation or divorce: Your parents were ever separated or divorced.
- Criminal household member: A household member went to prison.
Neglect
- Emotional neglect: Someone in your family helped you feel important or special, you felt loved, people in your family looked out for each other and felt close to each other, and your family was a source of strength and support.
- Physical neglect: There was someone to take care of you, protect you, and take you to the doctor if you needed it, you didn’t have enough to eat, your parents were too drunk or too high to take care of you, and you had to wear dirty clothes.
What does this mean?
The ACEs questionnaire accumulates a score from zero to seven based on yes/no responses to the above questions. These results in conjunction with a Health Appraisal Clinic’s questionnaire allowed correlation with risk factors such as smoking, severe obesity, physical inactivity, depressed mood, suicide attempts, alcoholism, any drug abuse, sexually transmitted diseases, parental drug abuse and a high lifetime number of sexual partners (>50), as well as the big swingers; mortality and overall morbidity.
The ACE score has been used to demonstrate a graded dose-response with more than 40 outcomes. You can see the entire list of publications here.
How good is the dataset?
Although there are almost all of the expected threats to validity from a questionnaire administered to people obtaining health insurance in the USA in the 1990s, the dataset is very good.
Of the 13,494 surveys, there was a 70.5% (9508) response rate, sent a week after standardised medical review. Respondents who did not respond to all questions were excluded from the final analysis. After non-responders and exclusions, a total dataset of 8056 responders was analysed. Alarmingly, more than half of the exclusions were for not answering the question about childhood sexual abuse. This certainly raises some concern for a risk of underreporting, particularly if this was the only question omitted!
What meaning can be drawn from the results (so far)?
The dataset has lent itself to the associations between adverse childhood experiences and a veritable laundry list of medical, psychiatric pathology as well as social and public health problems.
This is data reports that 1 in 5 were sexually abused, nearly 1 in 4 lived with a problem drinker or alcoholic”and that around 1 in 6 had a household member who was depressed or mentally ill.
It’s worth remembering that this study paints a picture of the adverse childhood experiences of the older generations in the USA – the mean age of respondents was 56.1 (19-92) years – in a study undertaken just over 20 years ago.
Rather than provide a snapshot of what childhood is like today, this data informs us about the childhood of the parents of our patients. This gives us some understanding and frameworks by which to consider expectations of childhood from the parental and societal viewpoint – that most parents hope for a rosier childhood with fewer adverse experiences than their own.
With this in mind, and with a critical eye to some of the correlating outcomes, behaviours such as alcohol & drug abuse, smoking, over-eating, and sexual behaviours might alternatively be viewed as both coping strategies and symptoms of the anxiety, anger and depression that is likely co-morbid with high levels of adverse childhood experiences.
Primary prevention of adverse childhood experiences necessitates change at the societal level; with a focus on improving the quality of family and household environments through the childhood years.
Funding for the original study was combined between Kaiser Permanente (San Diego) and the US Center for Disease Control.
Where next?
The Centre for Disease in Childhood has taken over the study and, since 2009, transformed it into a national program across 32 states of the USA, called “Behavioral Risk Factor Surveillance System” (BRFSS). Data from the 2010 BRFSS has been published and includes more than 50,000 respondents. You can see more about the participating states, future timeline and previous data via the CDC website, here.
References
Centers for Disease Control and Prevention, National Center for Injury Prevention and Control, Division of Violence Prevention. “About Behavioral Risk Factor Surveillance System ACE Data”.U.S. Department of Health & Human Services, Atlanta, USA. Accessed 5 October 2016. https://www.cdc.gov/violenceprevention/acestudy/ace_brfss.html
