Explanation of Procedures
Introduction
This is an outline of our plans for Phase 38 of the Health and Development Study. We hope you will read them carefully and agree to participate again in this very worthwhile research programme.
The purpose of the study is to obtain a better understanding of the aging process by studying the health and development of people in early mid-life. Not much is known about people in their late 30’s in this country or overseas, so what we find out will be used to help plan better services for adults.
Involvement in the Study is completely voluntary and you are free to withdraw at any time.
Any Questions?
If you would like to talk to us about any parts of the study, please telephone either Professor Richie Poulton (Director) or Dr Sandhya Ramrakha (Research Manager) on freephone 0800-479 8508 or from overseas +64 3 479 8508 [collect].
What Time?
Please arrive by 8.25 a.m. at the latest as we need to start promptly. You will receive a bonus for being on time!
From 8.40 a.m. to 12.15 p.m. there will be four 50-minute assessments, with a tea break. There will be a physical fitness test during this time, SO PLEASE WEAR CASUAL OR LOOSE CLOTHING. You are also asked to BRING ANY MEDICATION YOU ARE CURRENTLY TAKING so we can accurately record this information, and if you wear contact lenses, please also BRING YOUR CONTACT LENS CASE as one of the new assessments will require you to remove your contact lenses for a short time. We would also like you to BRING CONTACT DETAILS OF YOUR FAMILY AND FRIENDS as, once again, you will be asked to nominate three people to provide information.
The afternoon sessions will begin at 12.50 p.m. sharp, consisting of two 100-minute sessions broken up by a 10-minute tea break, and then one final 60-minute session, finishing at about 5.15 p.m.
Where?
As usual, the assessments will be carried out at the Research Unit (see map) in Dunedin.
Lunch
We will provide you with lunch.
What kind of interviews and tests?
The interviews and tests are described on the following pages. The names of those in charge of each area of study are also given. See the last page for a complete list of the researchers.
We would like you to read the explanation of the procedures before deciding whether to sign the consent form. If you would like more information, please phone us.
The Consent Form
The Consent Form contains a list of all the major sections planned for Phase 38.
IF YOU DO NOT WISH TO TAKE PART IN ANY PARTICULAR SECTION, CROSS OUT THAT SECTION ON THE CONSENT FORM.
Please bring the Consent Form contained in this package when you come to the Unit.
Old Studies and New
Most of the studies are similar to those you have taken part in before. All new studies are marked as such to help you decide whether you agree to take part in them.
Confidentiality
As always, all information is strictly confidential to the Research Unit and is never released to anyone unless you request this. All data is protected by an anonymous identification number.
And please remember.......
- If you are on time (8.25 a.m.), you receive a bonus reimbursement!
- To bring the Consent Form.
- To bring any medication you are currently taking.
- If you wear contact lenses, please bring your contact lens case with you. One of the new assessments (retinal scan) will require you to remove your contact lenses for a short time.
- To bring contact details (email addresses, phone/cellphone numbers, mailing addresses) of your family and friends whom you might nominate to provide information.
- To wear casual or loose clothing as you will be undergoing a physical fitness test.
Because a number of the assessments we are now conducting can be affected by substance use and/or recent food intake, we ask that you:
- Try to have a light breakfast.
- Try not to use excessive alcohol or drugs the night before you come to the Unit.
- Try hard not to smoke or use an inhaler (or any non-prescription medications) on your assessment day.
Morning Programme
1. Cardiovascular Health:
Theme Leader: Professor Richie Poulton
Co-Investigators: Professor Avshalom Caspi, Professor Temi Moffitt
As in the past, we will be measuring your blood pressure, heart rate, height and weight, and testing your fitness.
We will also assess your balance and hand strength (NEW).
Retinal scan (NEW): We will take a picture with a standard camera of your eyes in a darkened room. This is to examine the health of the small blood vessels that are easily visible in the eye. If you wear contact lenses, you will be asked to remove them for this assessment. Please BRING YOUR CONTACT LENS CASE on the day. The images will be sent to our collaborator in Singapore (Professor Tien Wong) for grading, then returned and stored at the Dunedin Research Unit.
Cardiovascular flexibility (NEW): We will measure the flexibility of the lining (technically known as the ‘endothelium’) of your blood vessels to give us an indication of the overall health of your cardiovascular system. This will involve using a blood pressure cuff on your forearm, and plastic caps on one finger of each hand.
Wrinkles (NEW): We will take a photo of the side of your face (eyes and mouth). This is used to measure wrinkling, for example as a result of sun exposure or smoking, as an indicator of aging of the skin. If you are wearing makeup, you will be asked to remove it for this assessment and wipes will be provided for this purpose.
2. Cognitive Function (New):
Theme Leader: Professor Temi Moffitt
Co-Investigators: Professor Avshalom Caspi, Professor Richie Poulton.
We will be testing your memory, attention, visuospatial ability, analytic and verbal reasoning. We last conducted some of these tests when you were 13 years old, and here we will repeat these for the first time in adulthood. We will also add some new tests to fully assess adult cognitive functioning.
If possible, please try NOT TO USE EXCESSIVE ALCOHOL OR DRUGS the night before you come to the Unit, as a “hangover” can interfere with these tests.
3. Respiratory Health:
Respiratory Leader: Associate Professor Bob Hancox
Consultants: Professor Malcolm Sears, Professor Richie Poulton, Professor Temi Moffitt
(a) We will ask about breathing problems, hay fever, cigarette smoking, sleep, and your work and home environment.
Lung tests: These will be identical to those you did at age 32, sitting in the body “box” and blowing into a mouthpiece, panting and holding your breath. There are no risks associated with these tests. Following these tests, we will give you Ventolin to breathe (an inhaler used by asthmatics) and repeat one of the breathing tests.
Exhaled nitric oxide and carbon monoxide tests: This is the same test we did at age 32. It involves blowing into machines which measure nitric oxide and carbon monoxide in the breath.
If possible: Please DO NOT USE ANY BREATHING INHALERS on the day of your assessment but bring them with you; and
Please DO NOT SMOKE on the day.
Afternoon Programme
4. Update of life events
Theme Leader: Professor Avshalom Caspi
Co-Investigators: Professor Temi Moffitt, Professor Richie Poulton
As at the last assessment, you will be asked about your life over the past six years. In particular, we will ask about where you have been living, who you have been living with, and the jobs you have had. We will also ask about recent major life events such as getting married, having children, and serious injury or illness suffered.
5. Emotional Well-Being and Behaviour:
Theme Leader: Professor Temi Moffitt
Co-Investigators: Professor Avshalom Caspi, Professor Richie Poulton
(a) As in the past, you will be asked about how you have felt over the last year, about any emotional problems or difficulties you may have had, and about your use of alcohol and drugs. The interview will cover a wide range of areas, including your use of mental health services.
(b) We will ask you about your emotional health in the years since you were 32 when we did not see you.
(c) As before, we ask for your permission to send a short questionnaire about your emotional well-being and behaviour over the past year to three people nominated by you who know you well. We can show you the questionnaire when you come in.
6. Sexual Relationships and Reproductive Health:
Theme Leader: Associate Professor Nigel Dickson
Co-Investigators: Professor Jennie Connor, Professor Peter Herbison
As in past assessments, we will ask you about your sexual behaviour and relationships, contraception, pregnancies, and any sexually transmitted infections you may have had. These questions will focus mainly on events since the previous assessment.
We will be asking for more information than before about satisfaction with relationships, and difficulty getting pregnant. We will also be asking about sexual behaviour and alcohol use (NEW).
As in previous assessments, these questions will be asked through a computer rather than an interviewer. You will be able to skip any questions you do not wish to answer.
7. Work and Finances:
Theme Leader: Professor Richie Poulton
Co-Investigators: Professor Avshalom Caspi
We will ask you about your qualifications and skills, and your current or most recent job. We will ask you about things that make your job stressful or demanding, how you cope with this, and how much support you get at work. We will ask you questions about your financial situation.
8. New Zealand Society, Identity and Health:
Theme Leader: Associate Professor Joanne Baxter
Co-Investigator: Dr Emma Wyeth
As at the last assessment, we will be conducting studies aimed at understanding health matters associated with ethnicity, identity and health. These studies will include questions about ethnic identity, involvement in Māori society, and experience of discrimination on the basis of ethnicity. Information collected at many of the other sessions will also be used for these studies.
9. Illegal Behaviour:
Theme Leader: Professor Temi Moffitt.
As previously, you will be asked about illegal things you may have done in the past year and about your attitudes towards illegal behaviour.
10. Partner Relationships:
Theme Leader: Professor Temi Moffitt
Co-Investigators: Professor Avshalom Caspi, Professor Richie Poulton
In this session, we will ask you whether you have a partner. If you do, we will ask you about the activities you do together, how you deal with disagreements, and how you divide up the household tasks.
We will ask about your other friendships and whether you feel lonely. Later in this session, we will ask you to remember back to your childhood and whether you experienced love or neglect or abuse when you were a child.
11. Dental Health:
Theme Leader: Professor Murray Thomson
Co-Investigators: Professor Richie Poulton, Associate Professor Christopher Sissons
The dental part of the study is mostly concerned with tooth decay and gum disease (which are the two main oral diseases). We are also interested in your attitude to dental care, and the effect that this has on your dental health.
As in the past, this will involve a brief dental examination and a questionnaire about your dental health. We will explain the results of the examination and give you a written report that you can take to your dentist if there are any findings that could be of help to you.
12. General Health
Theme Leader: Professor Richie Poulton
Co-Investigators: Professor Avshalom Caspi, Professor Temi Moffitt
In this session, as in the past, we will be asking you about your recent medical history, use of medication, injuries, physical activities, pain, diet and attitudes to health.
13. Blood Tests:
Co-ordinator: Professor Stephen Robertson
Again, we would like to take a small sample of blood (approx. 60mls). This will be taken towards the end of the assessment day at the Unit by trained nurses. Only a small amount of discomfort is involved. The blood will be analysed in the following studies:
13.1 Immune response to herpes simplex virus (type 2) and chlamydia trachomatis infection:
Blood will be analysed to provide information on previous contact with herpes simplex virus (type 2) and chlamydia trachomatis infection .and possibly human papillomavirus (HPV).
13.2 Respiratory Health:
Blood will be analysed for anaemia which will help us to interpret your breathing tests. We will also test for evidence of allergy and inflammation in your blood.
13.3 Immune response to herpes simplex virus (type 2) and chlamydia trachomatis infection:
Levels of cholesterol, various markers of inflammation, and other cardiovascular risk indicators will be measured.
14. COLLECTION OF INFORMATION FROM OTHER SOURCES
This information is required to provide further details for some of the studies described above. Information from other sources is sometimes more detailed than what you may be able to supply from memory. This information is, of course, subject to strict security measures to maintain confidentiality. Importantly, no information about you will EVER be given to any of the agencies listed below. Instead, we bring data back to the Unit and link it to your anonymous ID number.
As in the past, we will ask you for permission to collect the following information, current up to the date you come to the Unit for your age 38 assessment.
Police Records: for studies of illegal behaviour
Hospital Records: for studies of injury and health
GP Records: for studies of injury and health
Emergency Service Records: for studies of injury and health
ACC Records: for studies of injury and health
Traffic Accident Reports: for studies of injury and health
Ambulance Records: for studies of injury and health
Police Traffic Records: for studies of injury, health and drink driving
Credit Checks: for studies of work and finances
Government Benefits: for studies of work and finances
15. Genetic Studies (Ongoing since Phase 26)
Unit researchers will use DNA and (NEW) RNA, collected at age 38, to look for genes that make people resistant to health problems or stressful experiences. RNA is produced by DNA and measuring it allows us to better understand how genes work and how they influence your health. A brochure with more information about RNA will be available to you at the Unit on assessment day.
In the past, studies have sought to identify genetic information that may confer risk or protection against the development of behaviour problems such as depression, or the development of poor lung function. We will continue our work in these areas, with NEW studies focussing on heart and gum disease, cognitive difficulties and risk for diabetes. In a nutshell, we will be trying to understand how genes interact with life experiences to influence health and development, and how this might change as people age. In the long run, it is possible that the Unit might make discoveries that can lead to medically useful diagnostic tests, or new treatments, cures, and preventions.
Scientists seeking to access the Dunedin Study Biorepository for future research projects will require:
- Approval from the Director and Associate Director of the Dunedin Multidisciplinary Health and Development Research Unit; and
- Ethical approval from their host institutions and from the Lower South Regional Ethics Committee.
Professor Richie Poulton is overall principal investigator for all studies of physical health. Professor Temi Moffitt is overall principal investigator for all studies of behavioural disorders.
16. DNA and RNA in the Dunedin Study Biorepository
DNA and RNA samples will be deep frozen and stored in special, locked freezers that belong to the Dunedin Study, at laboratories at the University of Otago, Dunedin (with Professor Robertson), and Duke University, Durham, USA (with Professors Moffitt and Caspi). No names will be on the test tubes, only “bar code” identification numbers.
Importantly, the DNA and RNA we collect will NOT be used to identify individuals for any forensic or clinical purposes. The DNA and RNA will NOT be used to test for any known disease, and no “test result” will be generated. As a Research Unit, we are not equipped to provide clinical genetic testing or the genetic counselling that must accompany such testing. Should a Study member require clinical genetic testing in the future, a new tissue sample would be easily obtainable, without accessing the Dunedin Study Biorespository. If you are ever asked (for example, by an employer) whether you have undergone genetic screening, it is correct to reply that you have not. The DNA and RNA will be treated like all Unit data. Genetic data will be analysed in group comparisons only and is for confidential research use only. No feedback can be given to individual Study members or their GP about their genes although, as usual, the broader findings of the research will be shared with Study members in newsletters and other publications.
Responsiveness To Māori Within The Research
The Dunedin Study has implemented a Māori research policy. This policy has been developed as part of the partnership between Māori researchers, the Dunedin Multidisciplinary Health & Development Research Unit (DMHDRU) Director and others. This policy includes protocols for the collection, storage, analysis and disposal of samples collected as part of the research. It also includes protocols for the collection and analysis of data from questionnaires in relation to Māori. The Māori research team has a role of providing kaitiakitanga (guardianship) for Māori aspects of the Study. Copies of the detailed policy are available at DMHDRU.
Unit Non-intervention Policy
Our policy is not to intervene in people’s lives except in two exceptional circumstances where an individual is deemed to be:
(1) an immediate threat to themselves; or
(2) an immediate threat to the safety of others.
Thankfully, these situations hardly ever occur, but we have procedures in place should they be required. We do not provide Study members with formal feedback about their data collected during the day. However, we will continue to provide you with information and contact details (e.g. addresses for GP’s or specialised clinics and services) if you want this.
Security of Information
All information collected by the Research Unit is kept secure. Information is linked to anonymous numbers and special security procedures are in place to prevent the information being linked to the names of Study members. No material which could identify any individual is ever used in any reports of the Study. Only approved Dunedin Study researchers will have access to the data.
Confidentiality
Finally, we want you to be assured, again, that ALL the information we collect is for research only. It is strictly confidential and NEVER released to anyone unless you request it. Study members are assured that UNDER NO CIRCUMSTANCES WOULD WE SHARE INFORMATION ABOUT YOU WITH ANYONE, including partners or parents.
Risk
The American National Institute on Aging is funding some of the assessments: Recent Life History, Cardiovascular Risk Biomarkers, Cognitive Abilities, Illegal Behaviour and Partner Relations. They have asked us to specifically inform you about the risks of these studies. The risks involve:
- Possible emotional upset and worry that could be caused by discussing your recent life events, your illegal behaviour and your relationship with a partner;
- Slight discomfort when giving blood; and
- Possible loss of confidentiality if the Unit's security measures were ever to fail. Please consider these risks before you decide to participate in these interviews.
Accident Compensation Corporation (ACC)
In the unlikely event of a physical injury as a result of your participation in this study, you will be covered by the accident compensation legislation with its limitations. If you have any questions about ACC please feel free to ask the researcher for more information before you agree to take part in this Study.
Study Participants’ Rights
If you would like advice as to your rights as a participant in this Study, you may wish to contact a Health and Disability Services Consumer Advocate, telephone:
Free Phone: 0800 555 050
Free Fax: 0800 2787 7678
Email: advocacy@hdc.org.nz
Professor Richie Poulton - Director
Professor Temi Moffitt - Associate Director
Dunedin Study Directors
Director
Poulton, Professor Richie, BSc, PGDipSci, MSc, PGDipClinPsych, PhD, Dunedin Multidisciplinary Health & Development Research Unit, Department of Preventive and Social Medicine, Dunedin School of Medicine, University of Otago, New Zealand.
Associate Director
Moffitt, Professor Temi, BA, MA, PhD, Social, Genetic and Developmental Psychiatry Research Centre, Institute of Psychiatry, London, United Kingdom; Institute for Genome Sciences & Policy, Duke University, USA; Department of Psychology and Neuroscience, Duke University; and Department of Psychiatry & Behavioral Sciences, Duke University, USA.
Phase 38 Research Leaders
Baxter, Associate Professor Joanne, BHB, MBChB, MPH, FAFPHM, Ngāi Tahu Māori Health Research Unit, Department of Preventive and Social Medicine, Dunedin School of Medicine, University of Otago, New Zealand.
Caspi, Professor Avshalom, BA, MA, PhD, Social, Genetic and Developmental Psychiatry Research Centre, Institute of Psychiatry, London, United Kingdom; Institute for Genome Sciences & Policy, Duke University, USA; Department of Psychology and Neuroscience, Duke University; and Department of Psychiatry & Behavioral Sciences, Duke University, USA.
Dickson, Associate Professor Nigel, MB, BS DipEpid, MRCP(UK), FRACP, FAFPHM, Department of Preventive and Social Medicine, Dunedin School of Medicine, University of Otago, New Zealand.
Hancox, Associate Professor Bob, BSc, MBChB, MRCP(UK), MD, FRACP, Department of Preventive and Social Medicine, Dunedin School of Medicine, University of Otago, New Zealand.
Moffitt, Professor Temi, BA, MA, PhD, Social, Genetic and Developmental Psychiatry Research Centre, Institute of Psychiatry, London, United Kingdom; Institute for Genome Sciences & Policy, Duke University, USA; Department of Psychology and Neuroscience, Duke University; and Department of Psychiatry & Behavioral Sciences, Duke University, USA.
Poulton, Professor Richie, BSc, PGDipSci, MSc, PGDipClinPsych, PhD, Dunedin Multidisciplinary Health and Development Research Unit, Department of Preventive and Social Medicine, Dunedin School of Medicine, University of Otago, New Zealand.
Thomson, Professor W. Murray, MA, BSc, BDS, MComDent, PhD, Department of Oral Health, Dental School, University of Otago, New Zealand.
Phase 38 Co-Investigators
Bedford, Professor Richard, BA, MA, PhD, Population Studies Centre, University of Waikato, New Zealand.
Blumenthal, Professor James, BSc, PhD, Psychology and Neuroscience, Duke University, USA.
Braithwaite, Professor Antony, BSc, MSc, PhD, Children’s Medical Research Institute, University of New South Wales, Australia.
Connor, Professor Jennie, BSc, MBChB, DipObst, MPH, PhD, Department of Preventive and Social Medicine, University of Otago, New Zealand.
Harold, Professor Gordon, MSc, PhD, Centre for Research on Children and Families, University of Otago; Department of Psychology, University of Otago, New Zealand.
Herbison, Professor Peter, BSc, PGDipSc, MSc, Department of Preventive and Social Medicine, University of Otago, New Zealand.
Keefe, Professor Richard, BA, PhD, Schizophrenia Research Group, Psychiatry & Behavioral Sciences, Division of Medical Psychology, School of Medicine, Duke University, USA.
Odgers, Dr Candice, BA, MA, PhD, Department of Psychology and Social Behaviour, University of California-Irvine, USA.
Richards, Dr Rosalina, BSc, PGDipSc,MSc, PhD, Cancer Society Social and Behavioural Research Unit, Department of Preventive & Social Medicine, University of Otago, New Zealand.
Robertson, Professor Stephen, BMedSci, MBChB, FRACP, DPhil, Clinical genetics Group, Pathology, University of Otago, New Zealand.
Sears, Professor Malcolm, MB, ChB, MRACP, FRACP, FRCPC, McMaster University, Hamilton, Ontario, Canada.
Sissons, Associate Professor Chris, BSc, MSc, PhD, Pathology Department, Wellington School of Medicine, University of Otago, New Zealand.
Theodore, Dr Reremoana, BA, PGDip Arts, PhD, DMHDRU, Department of Preventive & Social Medicine, University of Otago, New Zealand.
Van Roode, Ms Thea, BSc, MSc, Department of Preventive and Social Medicine, University of Otago, New Zealand.
Williams, Associate Professor Michael, MB ChB, FRACP, MD, FACC, Medical and Surgical Sciences, University of Otago, New Zealand.
Wong, Professor Tien Yin, MBBS, MPH, FRCSE, M.MED, PhD, FRANZCO, FAFPHM, Singapore Eye Research Institute and National University of Singapore, Singapore.
Wyeth, Dr Emma, BSc, PhD, Ngāi Tahu Māori Health Research Unit, Department of Preventive & Social Medicine, University of Otago, New Zealand.
