Academic Feedback on the Project Plan

We launched this Blog for the Grief study in February. By March 2013, we were beginning to to get feedback and discussion via Twitter and e-mail about our plans for the project. One particularly interesting e-mail came from Professor Ronald Pies, psychiatrist and lecturer at The State University of New York. Professor Pies’ name was familiar to us from reading the contributions he has made, along with his colleague at the University of California, San Diego, Professor Sidney Zisook, on the merits of removing the bereavement exclusion from the new Diagnostic and Statistical Manual of Psychiatric Disorders.

Professor Pies raised some important questions about the design of the Grief Study. We thought other people might be interested in this correspondence and considering how our approach compares to alternative approaches available for the study of grief. Thus, with Professor Pies’ permission, an edited version of our discussion appears below. Initial pleasantries and introductions have been removed and the emails have been merged together to create a discussion.

If you have any comment or questions about the project that you would like to discuss publicly or privately, then please contact a member of the Grief Study team via e-mail, twitter, or by using the comment box at the bottom of the blog.

– Mark

RP:

Dear Grief Study Team,

Dr. Allen Frances recently made me aware of your intriguing study of bereavement, and I wanted to offer just a few thoughts for your consideration. First, I have some concerns re: “Our proxy measure for poor mental health is prescription of anti-depressant or anxiolytic drugs in the post-bereavement period.” From my perspective as a mood disorder specialist, I am not convinced that such prescription—though an easy and convenient proxy to track in data bases—is a useful or valid “marker” of psychopathology or “poor mental health.” In the U.S., at least, prescription of sedatives or antidepressants—frequently by general practitioners or non-psychiatric physicians—may indicate anything from lack of access to psychotherapy; to over-zealous prescribing; to a simple complaint of insomnia, during the bereavement period—not necessarily a patient’s “poor mental health.” (Perhaps things are different in the UK?). I would encourage you and your team to consider some more revealing measure of psychopathology, such as use of the GAF scale, Beck Depression Inventory, or the Symptom Checklist 90 (SCL-90). But if you are limited to searching data bases, and cannot actually assess the bereaved patients, psychiatric hospitalization would probably be a better proxy for “poor mental health”, in my view.

MMcC:

Dear Professor Pies,

Thank you very much for your e-mail and your interest in the study.

We would expect to find some patterning of prescribing such as you have described, and we hope to account for that in analysis. Hypnotics or anxiolytics may be prescribed to help with insomnia in the days and weeks post-bereavement. We would expect antidepressant prescribing to be much less common until six months after bereavement (i.e. after the period of the bereavement exclusion. {Edit – Here’s another article about bereavement exclusion}. We can investigate our research question with antidepressant prescribing after six months as our outcome measure, we can also account for the fact that some people may or may not have taken medication to help with sleep disturbance earlier in the course of the grief process.

In Northern Ireland, the vast majority of antidepressant and anxiolytic prescribing is by general practitioners (GPs). Everyone is registered with a GP, and their services and prescriptions are free at the point of use. There may be variation in prescribing due to differential access to psychotherapy, or difference in custom and practice of GPs (this includes under- or over-zealous prescribing). We will account for prescriber-level variation using multilevel modelling approaches – as such, our results will present the average risk estimate of prescription use, accounting for the this variation.

(Note – our next blog post features a discussion of using prescription information as an indicator of poor health)

As this study is based on linkage to administrative records, we cannot administer scales to bereaved individuals. The use of this proxy measure is a limitation, but this is offset against having information on such a large sample. As to the suggestion of using psychiatric hospitalisation as an alternative proxy, this would be another useful mental health threshold to measure. Under the current data linkage agreements this outcome is not currently available, although it may be possible to attempt linking such records for a future project.

 RP:

On a more theoretical note, my colleagues and I have been developing a self-completed questionnaire, called the PBPI, which I believe may help discriminate “ordinary grief” (of bereavement) from major depressive disorder. However, the PBPI has not been “field tested” for validity. I attach the scale and the associated article for your perusal; and, you are more than welcome to use the PBPI in your work and/or research, with no restrictions. I would be especially interested in your experience with the PBPI as a “predictor” of post-bereavement grief, versus a course more consistent with major depressive illness. I believe this could be done fairly easily by tracking post-bereavement hospitalization as a good “proxy” for severe psychiatric illness.

In any case, I appreciate your work in this area and will be eager to learn the results of your research.

MMcC:

Thank you very much for the article which I and the rest of the team read with interest. As mentioned previously, we won’t be able to deploy any scales in fieldwork for this administrative data linkage project, but we are keen to develop further research following on from this study. We will keep in contact about developments and future possibilities for using the PBPI.

Thanks again for your interest in the study, please keep checking in with the Blog (subscribe to the RSS feed would be an easy way to keep up to date) as we’ll be posting about progress and findings over the course of the study.

RP:

Dear Mark,

I do understand the limits of a records-based, statistical methodology in this study. I hope that you can gain access to hospitalization records, since I believe that would be a much better proxy for “severity” than medication prescription (for all the reasons we have discussed). I will try to “tune in” to your website from time to time; and, I do hope you find the PBPI of use at some time in your work, and I would be happy to hear any feedback on it. Many thanks for the informative note. You certainly have my permission to post my comments, either verbatim or edited, on your website.

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Meet the Grief Study Research Team

I’m Mark McCann. I’m a Research Statistician at the Institute of Child Care Research, and the Principal Investigator for the Grief Study. I’ve worked in the ICCR since 2009, but before that I worked on my PhD in the Centre for Public Health. My Doctoral thesis used the NILS, and looked at risk factors for admission to care homes for older people, including the importance of wealth and house value for the risk of care home admission; and reasons for the gender difference in the risk of being placed in a care home.
Since starting in the ICCR, I’ve worked on projects studying a parenting programme for Parents of Teenagers, looking at young people’s experience of sexual health clinics. Working with the Belfast Youth Development Study Team, I’ve collaborated on topics ranging from offending behaviour in adolescents, affluence and its effect on young people’s problematic alcohol use, and the effect of ecstasy use on depression.
In work, I’m interested in statistical methodology and its applications, drug and alcohol use, mental health, and social justice and equality – particularly in relation to health. These interests are what led to the idea for the Grief Study, to try and find ways to better support people finding it difficult to cope after losing someone close to them.
Outside of work, I enjoy swimming (please sponsor me for Marie Curie Cancer Care Swimathon), going on motorbike tours around Ireland, drinking Whiskey and playing the Banjolin. Not all at the same time. You can tweet or follow me @Mark_ICCR

 

My name is Aideen Maguire and I am a Research Fellow at the Institute of Child Care Research, working on the Grief Study. I have just recently been awarded my PhD in Epidemiology (January 2013) which focused on Measuring Mental Health in Northern Ireland. My undergraduate degree was in Social Psychology, obtained from the University of Ulster, Coleraine, and I later went on to complete a Masters in Social Research methods at QUB. The main focus of my PhD project was utilising population-wide antidepressant and anxiolytic medication prescribing data as a proxy indicator of population mental health. I was particularly interested in discovering which individual, household, area and GP practice level factors determined antidepressant and anxiolytic prescription variation within Northern Ireland.
My current research interests include pharmcoepidemiology and public health, especially issues surrounding mental health and the pharmacological treatment of mental disorders. What interested me most about the Grief study was the idea of medicalising sadness. I have an interest in the increasing use of pharmacological treatments for common mood disorders such as depression and anxiety and the exploration of prescribing practices post bereavement is extremely intriguing. In addition the longitudinal nature of the data available in the study allows for analysis of the long term effects of bereavement on mental health. Everyone will suffer loss in their lives, and most will react with normal sadness, but this study allows for the exploration of the factors that elucidate disorder post bereavement and those that protect against it.

Ah, when to the heart of man
Was it ever less than a treason
To go with the drift of things,
To yield with a grace to reason,
And bow and accept the end
Of a love or a season?

Robert Frost

I’m John Moriarty; I’m a Research Assistant at the Institute of Child Care Research working full time on the Grief Study. I studied Applied Psychology and am currently preparing my research dissertation on how adolescents influence one another’s drug use. My research has centred on how people internalise what others expect of them, and what knock-on effect this has on their health. In this context, bereavement interests me because when someone close to us dies, our own roles shift about and their death will change what is expected of us. The expectation that people will grieve in a certain way may be helpful to some who struggle with how to respond or feel; for others, feeling the need to perform one’s grief may compound feelings of stress.
Outside of work and dissertation, I’m currently reading Fever Pitch by Nick Hornby and writing a fan fiction version in which the frustrated protagonist grows up attending Dublin hurling matches. When the whirring of my laptop fans becomes too much, I either go to a gig or play 5-a-side soccer. Tweets to @John_ICCR are most welcome.

 

I’m Dermot O’Reilly; I’m a Senior Lecturer at the Centre of Public Health, and the Co- Investigator for the Grief Study. My main research interests have been in social epidemiology and in getting bits of data to talk to each other to advance this field. More recently however, I have been doing more research on the ageing process, though I must declare an interest as I seem to be getting on a bit. Outside work I work hard at trying to get a life and to understand jazz.

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Our (Best-Laid) Plans for the Grief Study

The Grief Study aims to estimate the prevalence of poor mental health outcomes among people who have suffered a bereavement. To do this, we will combine data from the Northern Ireland Longitudinal Study, the Northern Ireland Mortality Study and the Electronic Prescribing Database. The Northern Ireland Longitudinal Study (NILS) is a random anonymised sample of 28% of the Northern Ireland population whose responses to the 2001 UK Census have been held and linked to GP registration information. Like all of us, a proportion of this sample will have lost someone close to them since the beginning of the study. It is possible to identify those who have lost someone living at the same address as them, and to compare their mental health outcomes to the rest of the population.

Our proxy measure for poor mental health is prescription of anti-depressant or anxiolytic drugs in the post-bereavement period. This Distinct Linkage Project (DLP) allows for comparison of mental health outcomes between bereaved and non-bereaved individuals and for extensive analysis of particular populations of interest. The following five research questions illustrate the scope of the project and the particular bereaved groups whose experiences we want to better understand.

1. Does bereavement lead to an increased risk of poor mental health?

2. Does the likelihood of poor mental health following bereavement vary according to the cause of death?

3. To what extent do individual, household, and area characteristics mitigate or compound the risk of poor mental health following bereavement?

4. Does the ‘risk profile’, in terms of the magnitude of risk conferred by individual, household and area characteristics, differ between those bereaved following an expected death, sudden death, violent death or suicide?

5. To what extent does bereavement confer an increased risk of mortality, particularly when accompanied by poor mental health?

Question 1: Does bereavement lead to an increased risk of poor mental health?

Evidence suggests that bereavement is a major life event and considered a major stressor. Losing a loved one can hasten one’s own death, but we don’t know to what extent this is preceded by suffering which is significantly greater than that of the general population at large. By comparing the additional likelihood of being prescribed anti-depressant or anxiolytic drugs following a bereavement, we can attempt to measure how much suffering bereavement causes.

Question 2: To what extent do individual, household, and area characteristics mitigate or compound the risk of poor mental health following bereavement?

Grief reactions won’t be the same for everyone. By comparing bereaved individuals who have poor mental health outcomes with other bereaved individuals, we can develop a profile of individual characteristics and social factors which dispose someone to a more intense grief reaction. For example, we will be looking at whether grief reaction is more or less severe depending on sex, age, area deprivation and whether the bereaved individual provided care to the deceased.

Question 3: Does the likelihood of poor mental health following bereavement vary according to the cause of death?

The circumstances of an individual’s bereavement and the nature of the death of their loved one has potentially huge impact on their ability to cope. For example, there is widespread public concern over how a person copes after the sudden death of a young or middle-aged member of their family, particularly where the person has died by suicide. This concern reflects an appreciation for how the circumstances of death can potentially confer severe risk on a bereaved person.

Question 4: Does the ‘risk profile’, in terms of the magnitude of risk conferred by individual, household and area characteristics, differ between those bereaved following an expected death, sudden death, violent death or suicide?

This is an exploratory question to which studies to date give no satisfactory answer. If question 2 asks whether different some categories of person are differently affected by bereavement and question 3 asks whether some categories of death cause people to be differently affected, question 4 asks whether those particular deaths have a greater effect on everyone or only on particular categories of person. For example, we look at whether the extra mental ill-health suffered after a suicide is more pronounced for women or for men; whether better education protects against suffering following particular types of death, but not others.

Question 5: To what extent does bereavement confer an increased risk of mortality, particularly when accompanied by poor mental health?

Mortality is the more commonly studied outcome from bereavement, and several studies indicate that a bereaved person will die sooner than someone of the same age and physical health. However, none of these studies have had the measures available to examine why a bereaved person is at risk of dying and whether this risk is due to mental health deterioration.

We’re grateful to the Grief Study’s Knowledge Exchange Working Group for their input to date on these questions. If you would like more information about any of these research questions, please leave a comment, send us a tweet (John_ICCR ; Aideen_ICCR ; Mark_ICCR) or email j.moriarty [AT] qub.ac.uk. If you have information or insight which you think could be of value to the team, please share it with us.

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Welcome to The Grief Study Blog

Everybody will face bereavement at some stage; but for some people, this can be a more difficult process. There are many factors that can influence how people cope with the loss of a loved one, including the support they receive from family, their financial resources, stress, and the circumstances surrounding death.

By studying use of prescription medications to help with mental health, we can get a better understanding of how factors such as age, gender, family support, employment and religion affect how people cope after bereavement. By looking at circumstances of bereavement, this study will also discover if the factors that help people cope – such as family support – are more or less important depending on how they lost their loved ones.

The Grief Study is based on data from the Northern Ireland Longitudinal Study, which holds information on around 500,000 people. By linking this data with the Northern Ireland Mortality Study and Health and Social care information on prescriptions, we hope to learn more about bereavement, mental health, complicated grief, and longer term outcomes for people who have lost a loved one.

The Grief Study started in November 2012. The Research Approvals Group for the Northern Ireland Longitudinal Study approved the project at the start of February 2013, and since then we’ve started working to get the data ready.

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