A patient who chooses to live reacts to one who chose to die

I blogged a couple of days ago about Anne Örtegren, a patient long suffering with myalgic encephalomyelitis/chronic fatigue syndrome who chose to end her life after much deliberation. Her poignant last blog written before she died attracted a lot of attention outside and in the community of sufferers.

Here is a brief but insightful response from Wilhelmina Jenkins, who chooses to live and try to inspire others in that choice.

A bit of background about Wilhelmina. She became ill with ME/CFS in 1983 while working on her PhD in physics at Howard University. She described to me the experience of feeling her brain had shut down so that she couldn’t even comprehend the chapter she already written. She became totally disabled in 1987. She was not formally diagnosed until 1988  and became a part of support groups and advocacy efforts since then. Her daughter became ill with this disease in 1991 as a high school student.

ME/CFS is a devastating disease. There’s no question that it burns to ashes the life that you thought you had and leaves you with sickness and pain and a quality of life lower than any other major disease. Many people, after a long struggle, decide that they can’t go on any longer. I understand that. I have felt that way many times. But if you can stay, please stay. We need you. We need every voice in the fight for health equity for those living with this disease. We need your witness. We need your stories. And we need to know that you stand with us in the struggle. I do not care if we agree or disagree about anything – I still want you here. You are unique. You are valuable. Reach out if you are in doubt about going on. There will be a hand there for you to grasp, because even when things are darkest, you are a part of a community and you are loved. And when you choose to stay, if no one else has ever said it, I will – you are my hero.

Follow Wilhelmina Jenkins on Facebook.

Readers may also be interested in  The illusion you will be able bodied forever and the limits of empathy.

 

A sudden reversal of fortune for the biopsychosocial model of illness

Actually, I think this has been coming for a long time, but it just might have happened this morning in the UK online newspaper, The Independent. The public conversation has shifted about the biopsychosocial model of myalgic encephalomyelitis (ME; formerly known as chronic fatigue syndrome) in ways that will not be readily reversed.

Time for unrest: why patients with ME are demanding justice.

A new film sheds light on a condition that is largely ignored. Nathalie Wright reports on the struggles patients based to be taken seriously by doctors.

The Independent article is a long read. I will only ask you to read the first three paragraphs. Unless I am mistaken, you probably read the rest. I encourage you to even count the short three sentence opening as one of those three paragraphs.

“I feel seen for the first time!” exalts one viewer. “I feel vindicated. I finally understand what’s wrong with me, I think I’ve had this all my life,” says another. A doctor admits, “I feel so ashamed.”

I have a brief anecdote about two sobbing, ashamed doctors that I encountered in Amsterdam, but I’ll leave that to the end. Now I only want to pick out a couple of paragraphs that I hope you will not miss if you take on this long read.

The patients’ dilemma

For patients, communicating the seriousness of their illness is often impossible. “I had this experience of trying to describe my symptoms in words to my doctors for 18 months as I was getting worse,” explains Brea. “I would talk about a burning in my brain or my spine or the fact that I would lose the ability to speak or sometimes I would collapse on the floor and I couldn’t lift my head.” When she later requested her medical records almost all of these serious symptoms were translated into “headache pain”.

The biopsychosocial model

Psychosomatic explanations of the disease were being further developed by a small, but influential, group of psychiatrists in the UK. They developed a theory of ME based on the biopsychosocial model of illness, a framework for illness that has also been adopted by the Department for Work and Pensions (DWP), first fully embraced by New Labour. The biopsychosocial model states that illnesses are part biological, part mental, part social. This idea seems common sense, but in practice it is often the psychological elements that are emphasised. Thus, the “biopsychosocial” model of ME is that a patient may have originally had a virus but after that, symptoms are not primarily the result of an ongoing disease process at all. Instead, patients simply have “dysfunctional” or “false” illness beliefs and thus adopt the “sick role”. Spending too much time in bed is the reason they have physical abnormalities, as they become deconditioned due to “exercise avoidance”, and it is assumed that symptoms are reversible by the patient’s own efforts.

My intrusive thought I probably should not share: I wonder if Sir Simon Wessely – if he read this far this morning – is feeling small.

The inseparable politics of the biopsychosocial model

The biopsychosocial model, and the assumption that if people who become disabled from conditions like ME adopted the correct attitudes and behaviours they could recover, seems to appeal to politicians looking to cut the costs of disability payments. “Benefits can often make [ME] patients worse” claimed psychiatrist Simon Wessely, one of the originators of the biopsychosocial model of ME, in 1993 in a meeting with a minister for the disabled. If giving disability benefits to patients, such as those with ME, may foster a culture of dependency, then cutting these benefits can be presented as a positive intervention. According to a document promoting the biopsychosocial framework circulated by Lord Freud, the former minister for welfare reform, it is important for those with health problems like ME to “recognise that the sick role is temporary, in the expectation of recovery” and that giving disability benefits to such patients, may foster a culture of dependency.

The dangerous militancy of patients has been “grossly exaggerated”

Throughout it all, patients were depicted as dangerous militants in the media for criticising the trial, even though they turned out to be vindicated. The tribunal which ordered the release of the trial’s data ruled that “assessment of activist behaviour was, in our view, grossly exaggerated”. The most severely ill (about a quarter of patients are bed or housebound) continued to receive no care at all, with 80 per cent of requests for home visits turned down by the NHS. Added to this, a dearth of social care and difficulty getting benefits meant many patients were left completely desperate and often without any support at all, with even family members often disbelieving their illness. The waste of human potential caused by ME was recently reckoned to cost the UK economy £3.3bn a year in a report by The Optimum Health Clinic Foundation.

Your conflict of interest is showing and should be disclosed

As critics are increasingly pointing out, the problems with PACE went beyond bad science. A 2006 report by the parliamentary Group on Scientific Research into Myalgic Encephalomyelitis had already pointed out that there is a “vested interest private medical insurance companies have in ensuring CFS/ME remains classified as a psychosocial illness”. The report also mentioned cases where advisers to the DWP had also had consultancy roles in such companies. These links were investigated further by the Centre for Welfare Reform who stated in 2016 that: “Emphasising the importance of psychosocial factors and classing ME as a mental health problem could bring immediate financial benefits to insurance companies when policies limit payouts for mental health problems.”

The Americans have moved on

Across the pond in the US, science is moving on. In 2013 the US government asked the Institute of Medicine to convene an expert committee to examine the evidence base for ME. Two years later, their report Redefining an Illness was published. The report stated ME is “an acquired, chronic multi-systemic disease biological in nature” symptoms of which include “immune, neurological and cognitive impairment”. After reviewing thousands of medical papers, the report “stresses that this is a medical – not a psychiatric or psychological – illness”.

Two sobbing, ashamed physicians

I spoke at a showing of Unrest at Amsterdam Medical Centre in October. You can find a copy of a video here.

After the showing, I was leaving to meet friends for dinner. I stopped when I encountered two stylish women still sitting in their seats in the emptying auditorium, sobbing as if one of them had just received a diagnosis of cancer. I said “Excuse me, can I help?” One woman started to talk, but the other had to finish for her.

“My sister and I are both physicians. We just learned tonight how much harm we had been doing to our patients. We were only trying to do what was best for them, but we refused to listen to them. We feel very badly.”

I said:

“I believe that you thought you would doing what was best. Now you feel differently. I’ll bet a lot of your colleagues aren’t there yet. Maybe you and your sister can feel a bit better about yourselves if you help your colleagues get there.”

I turned and walked anyway without seeing their responses.

 

Systematic review shows no improvement in quality of mindfulness research in 16 years

Should we still take claims about mental health benefits of mindfulness with a grain of  salt? A systematic review by one of mindfulness training’s key promoters suggests maybe so.

saltCritics have been identifying the same weaknesses in mindfulness research for almost two decades. This review suggests little improvement in 16 years the quality of randomized trials for mental health problems.

This study examined 171 articles reporting RCTs for:

(a) active control conditions, (b) larger sample sizes, (c) longer follow-up assessment, (d) treatment fidelity assessment, (e) reporting of instructor training, (f) reporting of ITT samples.

What was missed

Whether articles reporting RCTs had appropriate disclosure of financial or other conflicts of interest. COI pose significant risk of bias, especially when they are not reported.

This article discloses authors’ interests. One of the authors, Richard Davidson is a prominent promoter of mindfulness training.  A Web of Science search of Davidson RJ and mindfulness yielded 26 articles from 2002 to 2016. It would be interesting to check in see if these consistent weaknesses in mindfulness research are mentioned in these articles. To what extent do RCTs with Davidson as an author had these weaknesses, like being underpowered?

Critic: You say financial interests or other investments in a treatment are a risk of bias. Yet, this article is critical of mindfulness research. Wouldn’t you expect a more positive appraisal of the literature because of the authors having a confirmation bias?

Not necessarily. Conflicts of interest are a risk of bias, but don’t discredit an author, They only alert readers to be skeptical. Furthermore, the weaknesses in this literature are so pervasive, it would be difficult to put a positive spin on them.  Besides calling attention to specific weaknesses that need to be addressed in future research can become part of a pitch for more research.

The article

Goldberg SB, Tucker RP, Greene PA, Simpson TL, Kearney DJ, Davidson RJ. Is mindfulness research methodology improving over time? A systematic review. PLOS One. 2017 Oct 31;12(10):e0187298.

End of paper conclusion:

In conclusion, the 16 years of mindfulness research reviewed here provided modest evidence that the quality of research is improving over time. There may be various explanations for this (e.g., an increasing number of novel mindfulness-based interventions being first tested in less rigorous designs; the undue influence of early, high-quality studies). However, it is our hope that demonstrating this fact empirically will encourage future researchers to work towards the recommendations here and ultimately towards a clearer and scientifically-informed understanding of the potential and limitations of these treatments.

From the abstract

Objectives

The current systematic review examined the extent to which mindfulness research demonstrated increased rigor over the past 16 years regarding six methodological features that have been highlighted as areas for improvement. These feature included using active control conditions, larger sample sizes, longer follow-up assessment, treatment fidelity assessment, and reporting of instructor training and intent-to-treat (ITT) analyses.

Data sources

We searched PubMed, PsychInfo, Scopus, and Web of Science in addition to a publically available repository of mindfulness studies.

Study eligibility criteria

Randomized clinical trials of mindfulness-based interventions for samples with a clinical disorder or elevated symptoms of a clinical disorder listed on the American Psychological Association’s list of disorders with recognized evidence-based treatment.

Study appraisal and synthesis methods

Independent raters screened 9,067 titles and abstracts, with 303 full text reviews. Of these, 171 were included, representing 142 non-overlapping samples.

Results

Across the 142 studies published between 2000 and 2016, there was no evidence for increases in any study quality indicator, although changes were generally in the direction of improved quality. When restricting the sample to those conducted in Europe and North America (continents with the longest history of scientific research in this area), an increase in reporting of ITT analyses was found. When excluding an early, high-quality study, improvements were seen in sample size, treatment fidelity assessment, and reporting of ITT analyses.

Conclusions and implications of key findings

Taken together, the findings suggest modest adoption of the recommendations for methodological improvement voiced repeatedly in the literature. Possible explanations for this and implications for interpreting this body of research and conducting future studies are discussed.

Competing interests

RD is the founder, president, and serves on the board of directors for the non-profit organization, Healthy Minds Innovations, Inc. In addition, RD serves on the board of directors for the Mind and Life Institute. This does not alter our adherence to PLOS ONE policies on sharing data and materials

The variables examined in the systematic review

Six methodological features that have been recommended in criticisms of mindfulness research [10–12. 14]. These include: (a) active control conditions, (b) larger sample sizes, (c) longer follow-up assessment, (d) treatment fidelity assessment, (e) reporting of instructor training, (f) reporting of ITT samples.

…We graded the strength of the control condition on a five-tier system. We defined specific active control conditions as comparison groups that were intended to be therapeutic [17]. More rigorous control groups are important as they can provide a test of the unique or added benefit a mindfulness intervention may offer, beyond non-specific benefits associated with the placebo effect, researcher attention, or demand characteristics [11,14]. Larger sample sizes are important as they increase the reliability of reported effects and increase statistical power [11]. Longer follow-up is important for assessing the degree to which treatment effects are maintained beyond the completion of the intervention [10]. Treatment fidelity assessment allows an examination of the degree to which the given treatment was delivered as intended [12]. Treatment fidelity is commonly assessed through video or audio recordings of sessions that are coded and/or reviewed by treatment experts [18]. We coded all references to treatment fidelity assessment (e.g., sessions were recorded and reviewed, a checklist measuring adherence to specific treatment elements was completed). Relatedly, reporting of instructor training increases the likelihood that the treatment that was delivered by qualified individuals [12], which should, in theory, influence the quality of the treatment provided. Lastly, the reporting of ITT analyses involves including individuals who may have dropped out of the study and/or did not complete their assigned intervention [12]. Generally speaking, ITT analyses are viewed to be more conservative estimates of treatment effects [19,20], and are preferred for this reason.

 

An American academic attempting to attend a PhD defense treated as a refugee at Schiphol, the Amsterdam airport

border controlAmericans are getting all too accustomed to hearing stories of US-based researchers being denied reentry into the United States after a visit to their native homelands. We also hear of conference speakers being denied entry into the United States at airports. We must not let this become the new normal.

Unfortunately, the US is not alone. A Dutch academic colleague recently reported his experience attempting to come to the rescue of an American researcher arriving to attend a PhD ceremony who was denied entry at Schiphol.

adriaan

Dr. Adriaan Visser

I give his account below as a guest blog. I asked him for clarification on one point. Dr. Visser told me that so far American colleague had to pay all fees out of her own pocket.

Adriaan Visser

A scientist treated as a refugee at the Dutch border

An US researcher from the Johns Hopkins University (Baltimore) was refused entry into the Netherlands, when arriving at Schiphol airport to attend three PhD defenses at the Free University (Amsterdam) about health care in Ethiopia.

She had supervised these PhD candidates for years. She was required to be at the ceremony as co-supervisor. The main reason for refusing her entry was that the total of her earlier stays of in NL exceeded 90 days by 5 days. Neither she nor I knew about that limitation. It had never been explained by border control.

A little drama unfolded, well known from the treatment of refugees at the Dutch border. After five hours waiting to get a 12 page pre-coded document, there was some unsympathetic communication with the border police. Not understanding the reason of her stay, they mentioning her “so-called type of professor”. The Dutch legal right to consult a superior and to contact a lawyer were not granted. The police forced me to leave the boarder, telling me if I didn’t, force would be used. An hour later, my American colleague was sent back to Washington D.C., escorted by a border police to the waiting plane. Her passport was given to the flight attendant.

Cost for the Dutch government: 2,300 euros.

After a lot of negotiation in the USA with a Dutch lawyer and support by the Free University, she got the permission to return to the Netherlands for four days to attend the PhD defenses as co-supervisor.

Cost: Several thousand dollars for the tickets and lawyer’s fee.

My belief in a human constitutional approach at the border fell below Dutch level.

Adriaan Visser, PhD, researcher/psychologist, Director of Pro-Health.org, Rotterdam, NL

brexitJCC: Post-Brexit British academics, this could happen to you.

 

Writing papers and grants during the holidays: An informal international conversation

Whether and how academics should write papers and grants during the holidays is a complex issue. Any advice whether they should must be qualified by a huge “It depends.”

shit academicsI will be providing some advice about writing during the holidays in  articles on LinkedIn (Follow me on Linkedin). The articles will carry a warning label that I got from “Steal like an Artist”:

Some advice can be a vice. Feel free to take what you can use, and leave the rest. There are no rules.

To conduct an informal poll about academics writing during holidays, I posted a query in various places, including my own personal Facebook page and that of Reviewer 2 Must Be Stopped 

The results were fascinating. I expected there’d be some differences associated whether the end of the year holiday was just a matter of a couple days or the extended 3 to 5 weeks that  some academics get teach in liberal arts departments in the United States. I thought there would be huge cultural differences. I didn’t think enough about gender issues.

blackwoman-techI did not post the query in these public sites with the idea I would simply harvest the quotes and post them. But what I got was great and a bit challenging of me and my preconceived notions.

Here’s a selection of what I got, including some comments that I made.

My post on Facebook pages:

I’m curious about cross-cultural differences in expecting to get writing done over the holidays. Many American academics look forward to the break from classes and grading. But they may have trouble balancing getting writing done with family responsibilities attached the holidays. My sense is that some other cultures it is considered a sign of mental disorder to write during holidays, when you should be relaxing. Please share your thoughts.

From an American male:

I know at non-R1s [universities and colleges in place a premium on quality of teaching, not publications],where teaching loads are heavier, scholars may feel they have to use holidays and summer to do most of their writing. Me, I’ve got a couple little things I may have to work on a bit, but I’m definitely going to prioritize family, relaxation and hobbies. Definitely not doing full-time days of writing!

From a UK female:

female-scholar-writing-mathematics-fomula-7607816Yes, of course. These are expectations (often expressed directly, explicitly by ‘managers’ who say that being an academic means working during weekends) in some institutions in the UK. But what can be more important than family time during Christmas? Definitely not writing another insignificant (however important we think our fields are) research paper about an aspect of social sciences that has probably been over-researched. My sanity was saved by reading ‘Return to meaning’.

From a male

In our culture it would indeed be considered a sign of a disorder for a normal person to sit at a computer and work during holidays. But as I said, NORMAL person – so this may not apply to academics.

A couple of other males

I think what’s being got at there is that unlike our students, we don’t have a 3 week break at Christmas, and another at Easter, and 3 months in the summer. The original question is conflating those two things though, although probably has more to do with the actual holiday time of however many days you nominally take off for Christmas/New Year but spend working instead.

And

Who wants time to write during which we anyway procrastinate. Do the smart thing, wish for 4 amazing, fully written manuscripts that will be lauded by reviewers 1 through 5, get an expedited review and publication process, will be read my many, discussed and cited by even more and win a few awards. It’s Santa Claus we’re talking about, dear colleagues, let’s make our wishes count!

Which got these responses from females:

As a woman with a small child my daycare is closed for two weeks so really I have little choice, and really we need to not call it a break if we plan to work,

I work in France. The bschool is closed for 2 weeks in August and 1 over xmas. Absolutely nobody expects you to work during this time..

Rather typical is writing during free time in Poland. Many students and my colleagues academics are writing during holidays too.

My experience of UK universities is that many people work. It’s not required, but often it’s the only time you get enough uninterrupted time to write – and promotions are linked to outputs such as grants and publications – so often, we write at Christmas. I will be writing my book – but in a relaxed way, with breaks as well.

Same in France. No obligation, but if you don’t do it, you perish.

 You may be interested in my line of research. I looked at the effects of vacations on employee well-being. And I also investigated the influence of work-related activities and lack of mental detachment from work during holidays. This article gives an overview of my findings: . Hint: the Dutch may be right. Have a happy holiday 🙂

Really interesting article! Sweden was also a place where I realized that not everyone was as workaholic as the US. The summer houses! Wish I could have stayed after my post-doc

An American male in the UK

young-man-studying-with-laptop-computer-on-white-desk_1139-980I was able to keep my lab open during the month of August, when everything else was pretty much shut down. However, not so for Christmas. They practically turned the electricity off in the building over Christmas break. However it has been several years since then, and I suspect that the many business-oriented administrators who’ve been hired to boss UK academics around since then have determined that the lights are on and the fire burning under the butts of the lowly academics.

A female posted

Come all ye scientists, busy and exhausted. O come ye, O come ye, out of the lab

I’ll be writing pretty much non stop over break. I might take off Christmas Day. I am at a R1 in US, and I don’t have tenure yet. I could never take the whole break off.

A male

Anyone who writes during the holidays takes work too seriously. Unless it’s a grant. Always write the grant.

A female

Yes! First, in other places, Christmas is a multi-day holiday. In Germany, for example, the 24th, 25th, and 26th are public holidays. They’re so family-centered that you’re not even calling other people on the 25th. On the 26th, maybe. And in general there is no expectation that anything gets done “between the holidays” (between Christmas and New Year’s) either. Everyone needs some down time.

Me

When I was an academic teaching at UC Berkeley, the winter holiday break was three weeks and so there was more of a dilemma of taking a complete break from writing. In US med schools I had a choice of how to distribute any of 5 weeks/yr in addition to the enforced shutdown of 5 days Christmas-New Years.

And

I am curious how some European academics make a firm distinction between writing as work vs other things as fun. For some Americans, writing is fun.The cannot understand depriving themselves of at least some writing during extended holidays.

 Which got this response from a female in Europe

Writing is the most fun part of my job. But that still means not spending time with family and friends. There is a life out there, you know

I responded:

I think it was BF Skinner who first observed that keeping writing fun depends on protecting other fun activities from being threatened by it. I don’t think it’s an either or situation. I know that some American academics say much briefer time for writing during the holidays and ensure that it doesn’t intrude on responsibilities to their families….This something to be said for writing at least a small amount every day and thinking about what you’re writing. That can be integrated with a healthy commitment to the family.

To which a female from Europe responded

But who cooks the meals?

The male whose quote began this thread

I will say, I have come to (without planning) adopt the mentality of doing a little bit of work each day (literally including Christmas, T-day, my birthday, etc.) Although we may be only talking an hour or two (so it’s not oppressive) there are parts of me that wish I hadn’t developed this mindset…it would be nice to be able to have some days where I did 0 work-related things without feeling some internal pressure.

European females

May I add gender here? Sitting down and writing seems a lot kore straightforward for folks who have no holiday prep, cooking, baking, shopping, visiting people etc obligations. From the 22nd on I’m busy just with family stuff.

And

Personally, I write a lot better after a weekend without work. Or after holidays. To each their own.

Me

I would hope that women academics who have spouses are able to negotiate the spouses doing some of the holiday/family tasks.

Some European females

Hope springs eternal. And I hope that male academics are doing at least half of the unpaid housework and care work. If not, all this talk about writing is just an insidious expression of gender privilege.

And

Exactly. And they should be doing those tasks without ‘negotiating’.

And

My wonderful hubby does all the housework – no negotiation, it’s just how things work in our house. We’ve previously split 50/50 and done things in different ways. We just work out what works best in the current circs and get on with looking after each other!

Me (in hindsight, rather naively)

Wow! I would like to think that it is possible to start a conversation about writing during holidays without being accused of expressing gender privilege. I coach grant writing and teach scientific writing and increasingly most of my students are women…

A European females

It’s not about “expressing” gender privilege. These privileges (of class, gender, family status) are simply there. When we talk about writing and productivity and balancing things in abstract, we tacitly ignore that some of us have a lot more things to…See More

A male

Well work-life balance is one issue where changing current norms would be a win-win. It will help everyone whether they acknowledge gender privilege or not.

A female

It’s best not to get defensive about privilege. Women are telling you something important and I suggest trying to connect with other realities. Some of us are single parents or in other arrangements where the mere mention of writing over the holidays is something that is a bit sad because we lack choice. Thanks for listening.

A male

I think there is US privilege going on here too.

A female

I don’t think it is that, the fact is there is gender privilege and as a man one benefits from it regardless of how one thinks about it, and it is impossible to discuss this topic without gender issues coming up as the holidays are when children are home from school and at the same time academics are expected to write write write, an expectation from the days of the white male academic either single or with a housewife, that has continued despite changing realities…(and not everyone has a spouse or an academic spouse, my husband has a real job where breaks do not exist so the burden is placed on me to do daycare drop off, pick up, and care over the holidays)

Another  female

I am highly prolific with taking weekends off. Everyone what s/he thinks works best but I am very concerned about your advice to junior staff.

Me

Some people find writing a satisfying activity which they freely choose over other activities. They become academics because it gives them protected time and resources. The routine of writing small amount every day is recommended to establish a momentum. It is not just the time spent in front of the computer, but what spontaneously occurs when one is away from the screen and absorbed in another activity. ..Some of us have found it is much more satisfying and efficient to write small amounts every day and then get into other activities than to chew up one’s life with unproductive and unpleasant binge writing.

A female

Seconding what James said. I do take some time off to be with family during the holidays. But eventually I start itching to get back to writing. I write not because I have to, but because I *want* to. It fulfills me and sustains me. I go crazy if I don’t find time to write.

Who then elaborated

“Because for some of us, books are as important as almost anything else on earth. What a miracle it is that out of the small, flat, rigid squares of paper unfolds world after world after world, worlds that sing to you, comfort and quiet you or excite you. Books help us understand who we are and how we are to behave. They show us what community and friendship mean; they show us how to live and die… My gratitude for good writing is unbounded; I’m grateful for it the way I’m grateful for the ocean.” – Anne Lamott, Bird by Bird.

Me

Anne Lamott is a fun writer and a strong advocate of writing everyday and strugglng to get the zero draft just right but to let it flow.

She replied

Exactly! Butt in chair. Write, write, write. The best texts aren’t written but *re*-written.

Another female

Having grown up in Sweden and working in the US, I definitely see cross-cultural differences, with Swedes being much more pro vacation. My US colleagues often bemoan the fact that they have to work on grants and manuscripts on their “time off”, but they also know that it’s necessary for advancement. I think those differences at least partly due to differences in expectations from their universities. Personally, I’m somewhere in between and work on way too many holidays, but as a single mom, I decided early on that ignoring my family was neither feasible, nor would I want to miss time with my kids. So I tried to carve out time for both. #SleepWhatSleep

A female

There is a great deal of confounding of creative (Lamott, Hemingway, Wolff) and academic writing in this thread. I am an N of 1, but I write both and they are very, very different. The impulse to write fiction every day is a creative, alive one about gaining entry into fictive worlds and characters. Academic writing is formulaic and insisting on doing it “every” day (including holidays) seems like workaholism. I agree with academic writing every work day. But should every day be a work day for academics?

A male

Damn your US authoritarianism why assumes yours is the only correct way when in fact US models of intellectual life are aberrant, ethically wrong, and lacking in rigor.

A female

I suspect family and loved ones might often disagree about taking half an hour a day away from them. There are times when they want to know they have your attention 100%. It’s not just the time spent away from them, but the working out how to fit it around holiday activities. It takes your attention away from them…That’s my two pennyworth..

And

I can remember ordering four pennyworth or chips from the fish and chip shop when I was a child after Brownies. We had to have four pennies in our uniform pocket along with a piece of string and a safety pin in case of emergencies. The old public phone boxes used to cost four pence to use. We didn’t care about emergencies too much. We wanted chips!

An American male

I strongly support your statement. I start by having students write a paragraph per day with an underlined topic sentence. Once they get that down, I get them to go to 200 per day and to always read every text aloud. If they are writing articles, I tell them, 300 words or if overwriting to start at a different location every day to avoid the perfect beginning and poorly edited body/tail. If writing a book, I tell them 500 per day but say that that is impossible if they have not been writing 200 per day before then.

A female

I write in the morning and stop by noon. My measure is by the hour not by how many words. By noon I have enough time to spend with family and what I call recreational reading ( including Facebook). It works out well for me.

A female

I go by minimum number of words. At times, my extended family tried to stop me from working, out of some fear it was not good for me. They don’t realize how much I cherish writing. So, I would just get it done before everyone got up, or late at night!

The last male commentator again

Writing every day is as necessary as playing etudes is to a pianist. It keeps your vocabulary limber and teaches the subtleties of phrasing.

A female

I used to waste my holidays on work until I realized how abusive this is. Now, I make it an unquestionable rule to rest and do whatever I want. No matter what wisdom and skill you may think you gain if you work during holidays I will argue you are kidding yourself as in fact, the only thing you actually do is to punish yourself.

Me

What if you wanted to write because you found it fun?? But what if you found writing relaxing? I am retired from academia and write for fun and activism. A brief period of writing is like my wife playing the piano is for her.

Confirmation bias in JAMA Psychiatry article concerning neighborhood-level variation in risk of psychosis

quick takesThis is one in a series of Quick Takes intended to show you when you can reasonably dismiss an article from further consideration based on inspecting its abstract alone. Once again we are dealing with hype and exaggeration in a JAMA Network Journal.

The abstract reports but ignores that most incidence rate ratios (IRRs) confidence intervals included 1.0, and overall results are weak.

giphy

A more suitable conclusion would be that “only weak and inconsistent evidence was fouind  for neighborhood-level variation in risk of developing psychosis in rural populations.” That finding is somewhat surprising and inconsistent with some past research, but should not be suppressed.

This article represents a good teaching example of confirmation bias, whereby weak findings are interpreted as consistent with the dominant view in the literature.

Take away messages

Don’t assume that because a finding is reported in the prestigious JAMA journals, it is credible.

Pay attention to the numbers in abstracts, particularly the confidence intervals and whether they exclude 1.0.

Ponder the question of whether this kind of confirmation bias was required for such weak findings to get published in a prestigious medical journal.

The article

Association of Environment With the Risk of Developing Psychotic Disorders in Rural Populations: Findings from the Social Epidemiology of Psychoses in East Anglia Study Lucy Richardson, MSc1; Yasir Hameed, MRCPsych2; Jesus Perez, PhD, MRCPsych3; et al

Excerpt from the abstract

Results  The study included 631 participants who met criteria for FEP and whose median age at first contact was 23.8 years (interquartile range, 19.6-27.6 years); 416 of 631 (65.9%) were male. Crude incidence of FEP was calculated as 31.2 per 100 000 person-years (95% CI, 28.9-33.7). Incidence varied significantly between neighborhoods after adjustment for age, sex, race/ethnicity, and socioeconomic status. For nonaffective psychoses, incidence was higher in neighborhoods that were more economically deprived (IRR, 1.13; 95% CI, 1.06-1.20) and socially isolated (IRR, 1.11; 95% CI, 1.04-1.19). It was lower in more racially/ethnically diverse neighborhoods (IRR, 0.94; 95% CI, 0.87-1.00). Higher intragroup racial/ethnic density (IRR, 0.97; 95% CI, 0.94-1.00) and lower intragroup racial/ethnic fragmentation (IRR, 0.98; 95% CI, 0.96-1.00) were associated with a reduced risk of affective psychosis.

These are trivial differences of which only two of five reach conventional significance, when one actually inspects the confidence intervals. Maybe the authors and editors are assuming that readers pay attention to such information or maybe they are hoping that readers accept the earlier statement: Incidence varied significantly between neighborhoods after adjustment for age, sex, race/ethnicity, and socioeconomic status.

The article ends with an attempt to explain the “finding”:

We found evidence of variation in the incidence of FEP across the rural-urban continuum, associated with deprivation, social isolation, and racial/ethnic composition. Social adversities, or failure to assuage the negative consequences of such adversities,40 may increase risk,39 but carefully designed longitudinal studies are required to determine causality.

What is an incidence rate ratio?

“Incidence rate ratio (IRR) – Incidence rate ratio is the ratio of two incidence rates. The incidence rate is defined as number of events divided by the person-time at risk. To calculate the IRR, the incidence rate among the exposed portion of the population, divided by the incidence rate in the unexposed portion of the population, gives a relative measure (IRR) of the effect of a given exposure and approximates the relative risk or the odds ratio if the occurrences are rare.”

Probing the claim a black, working-class man would have to call 80 psychotherapists to get an appointment.

Study of returned calls from psychotherapists for requests for first appointments got lots of attention in social media but were claims accurate?

hands from da VinciA recent paper  reporting results of calls to psychotherapists for a first appointment got lots of attention in social media after a story in The Atlantic  made provocative statements about  its results.

Some of the claims in the Atlantic article resonated with readers assumptions about how difficult it is to get an appointment

Even for those with insurance, getting mental healthcare means fighting and through phone tag, payment confusion, and even outright discrimination

A lot of the attention to the Atlantic article was due to prominent display of the claim:

black man would

Sure, it is plausible that a black working-class man would have a harder time getting an appointment, but it really take 80 to get a first appointment?

The Atlantic article zeroed in the interaction between gender, class, and race that was presented as more complex in the actual report of the study

Among working-class callers, the study showed equal rates of appointment offers between white and black callers; if perceived race were causing class misidentification by therapists, then one would instead expect to see lower appointment offers for black working-class callers. If anything, the true race differences within the middle class may be slightly smaller than observed, and the class differences among blacks may be slightly larger than observed. Ultimately, the sizeable and statistically significant effects support the conclusion that there is a true disadvantage to black middle-class help seekers and all working-class help seekers, relative to middle-class whites.

So maybe class mattered more than race.

The apparent strength of findings might reflect methodological weaknesses of the study and the author’s stereotypes as much as the prejudices of the therapists who were called. The Atlantic article noted:

Heather Kugelmass, a doctoral student in sociology at Princeton University, selected 320 therapists from the directory of Empire Blue Cross Blue Shield’s HMO plan in New York City. She then had voice actors call them and leave voicemail messages saying they were depressed and anxious. They asked for a weekday evening appointment. She distinguished between different income groups by altering the vocabulary and grammar in the scripts, and she used studies on African-American vernacular and Black-accented English to craft the African-American callers’ scripts. The lower-income white callers spoke in a heavy, New York City accent. All of the callers mentioned they  had the insurance that the therapists purportedly accepted.

The Atlantic article acknowledged:

And it’s hard to purposefully make a person sound poor or black. In the working-class white script, for example, the actor said “hiya doc,” instead of “hello,” and mentioned “on the website I seen your name.” The working-class black script included flourishes that bordered on cartoonish, like “a’ight?” and “my numba.”

The Atlantic article drew some strong reactions, like from a psychologist from Australia, where there are different expectations of psychotherapists:

facebook shocked.

But a Minnesota psychiatrist offered a more sympathetic view of the therapists, noting that insurance companies and managed care share some of the responsibility for the difficulties those in need have in getting a first psychotherapy appointment.

only ways to keep doors open

Finally, the Atlantic article provided some relevant statistics

Between 30 and 50 percent of psychologists run their own practices, which allows them to largely control their own schedules, client rosters, and insurance networks. About 30 percent appear to accept no insurance at all, according to the American Psychological Association, a trade group for psychologists.

And

More than half of all counties in the U.S. have no practicing psychiatrists, psychologists, or social workers. In any given year, about one in five Americans has a mental illness, according to the National Alliance on Mental Illness, but nearly 60 percent of those people don’t get services.

And some good quotes, like:

“If it’s a market where you pretty much have to pay for yourself, the rich are always going to win,” Stanford University psychiatry professor Keith Humphreys told KQED recently

The original study reintroduced the concept of the YAVIS patient desired by therapists, something  I have discussed with respect to psychosocial care of cancer patients. The article said

Research suggests that psychotherapists (hereafter also called “therapists”) favor help seekers with the “YAVIS” attributes: young, attractive, verbal, intelligent, and successful (Tryon 1986). Consistent with the YAVIS hypothesis, Teasdale and Hill (2006) found that therapists prefer “psychologically minded” clients and those who share similar values and attitudes. These effects were independent of the demographic characteristics (including race) of the help seekers, but the results were survey based, so social desirability pressures may have influenced the results. In another study, black patients were rated by psychiatrists as “less psychologically minded” as well as “less articulate, competent, [and] introspective” than otherwise equivalent white patients (Geller 1988:124).

The Atlantic article

Not White, Not Rich, and Seeking Therapy

The original study

Kugelmass H. “Sorry, I’m Not Accepting New Patients” An Audit Study of Access to Mental Health Care. Journal of Health and Social Behavior. 2016 Jun;57(2):168-83.

Abstract

Through a phone-based field experiment, I investigated the effect of mental help seekers’ race, class, and gender on the accessibility of psychotherapists. Three hundred and twenty psychotherapists each received voicemail messages from one black middle-class and one white middle-class help seeker, or from one black working-class and one white working-class help seeker, requesting an appointment. The results revealed an otherwise invisible form of discrimination. Middle-class help seekers had appointment offer rates almost three times higher than their working-class counterparts. Race differences emerged only among middle-class help-seekers, with blacks considerably less likely than whites to be offered an appointment. Average appointment offer rates were equivalent across gender, but women were favored over men for appointment offers in their preferred time range.

eBook_Mindfulness_345x550Preorders are being accepted for e-books providing skeptical looks at mindfulness and positive psychology, and arming citizen scientists with critical thinking skills. 

I will also be offering scientific writing courses on the web as I have been doing face-to-face for almost a decade. I want to give researchers the tools to get into the journals where their work will get the attention it deserves.

Sign up at my website to get advance notice of the forthcoming e-books and web courses, as well as upcoming blog posts at this and other blog sites. Get advance notice of forthcoming e-books and web courses. Lots to see at CoyneoftheRealm.com.
 

 

A dog ate the “fishy business” data for article in Science : What can be done?

dog ate my dataActually, not a dog, but it is an equally lame story: A thief allegedly made off with the only copy of the data from study critics claim never happened. What can be done?

Authors of what could became known as the fishy business study   of effects of microplastics on fish claimed they could not share the data behind their controversial conclusions because the laptop storing the study data had been stolen. They claimed no backup was available. This was not just some psychological study of embodied cognition that no one can replicate about which no one should care. This study helped spark removal of microbeads from toiletries and cosmetics.

Fishy business

Two Swedish fish researchers, with the aid of five colleagues elsewhere in the world, have alleged fraud in a study on the effects of microplastics on larval fish published in Science by two scientists at Uppsala University (UU) in June 2016. The study supposedly took place at the Ar Research Station in Gotland, but the whistleblowers say it never happened, based on eyewitness testimony and other evidence. A preliminary investigation by UU dismissed the claims in August 2016; a second investigation, by an expert panel at Sweden’s Central Ethical Review Board, is still ongoing. An expert hired by that panel filed a more damning report last February that raised the possibility of fraud. Now, both sides are awaiting the expert panel’s final verdict, which may influence an ongoing debate about how Swedish institutions investigate research misconduct.

swedish-fish-assorted-5lb-7Skepticism about the findings and the authors not producing their data led to the study being retracted.*

The incident is causing re-evaluation of Science’s data sharing policies and should give pause elsewhere.

Science has an editorial policy promoting data availability and research transparency.

“Before publication, large data sets must be deposited in an approved database and an accession number…included in the published paper.”

And

“After publication, all data [and code] necessary to understand, assess, and extend the conclusions of the manuscript must be available to any reader of Science.”

But some loopholes:

Small data sets are exempt.

Scientists cannot be trusted to reliably share them upon request.

There are no consistently enforced penalties for investigators not sharing  data.

The Science editorial asked “Does failure to provide raw data post-publication lead to the automatic retraction of the paper?”

Ah, yes, ask PLOS One please note.

The Science editorial proposes

The solution to avoid data disappearing is simple: Journals must mandate and enforce data archival on a recognized, online repository at the time of submission. Only editors and reviewers would have access during peer review; the data would be made generally accessible upon publication.

And provides this rationale:

Publishing verifiable research is a tenet of scientific progress and, ultimately, journals are responsible for guaranteeing compliance with their open-data policy. At a minimum, this responsibility involves a cursory check of the underlying data and ensuring that all data are available for reviewers to assess (4). Science publishes many papers describing major breakthroughs, but these extraordinary claims must be supported by extraordinary evidence. This includes, first and foremost, a complete and understandable data set that is open to reviewers and, ultimately, becomes open to scientists and the public.

Laudable principles, indeed. But this incident occurs at a time just when there is a general retreat on journals enforcing  data sharing policies. There is a call for universities and funding agencies to step into the breach and insist on data being available.

But we know how what happens when the skeptical or merely curious request data. Refusal and even retaliation against those who request data are increasingly being reported. Journals don’t support those who request data. Professional organizations don’t support them. When pushed, universities side with authors who do not want to share their data.

When you request data, you may find no one supports you and you may even lose friends.

I asked for the PACE trial that the investigators had promised would be available as a condition for publishing in PLOS One. I thought the journal would facilitate my obtaining the data. Instead, PLOS slapped a ban on my discussing this in my PLOS Blog Mind the Brain. But PLOS would not publicly acknowledge the restriction nor even spell out the specific conditions-

Was the ban on my writing about the request for the data? About data sharing, more generally? Could I blog about chronic fatigue syndrome/ if I did not mention the PACE trial? Misunderstanding of what I could and could not write about led to comments abruptly being closed on my blog in December 2015 and my being denied access.

Eighteen months after my request, I still have not received the data, but PLOS One finally attached a highly visible Expression of Concern to the PACE paper published in the journal.

I thought it might be time for me to start blogging about PACE and any other topic I might have avoided because of concern about Mind the Brain. I agitated a bit, got others doing so on Twitter. The PLOS Twitter account replied a decision would be forthcoming. My access to Mind the Brain was abruptly cut, with a misleading announcement from PLOS that the parting of our ways was by mutual agreement. It decidedly was not. It was by unilateral fiat.

You can still read my posts at the PLOS blog website. But don’t give them the traffic they crave. You won’t be able to leave comments. Instead go to same blog posts here   at CoyneoftheRealm.com  I welcome your comments there.

*Editorial Retraction

Jeremy Berg

After an investigation, the Central Ethical Review Board in Sweden has recommended the retraction of the Report “Environmentally relevant concentrations of microplastic particles influence larval fish ecology,” by Oona M. Lönnstedt and Peter Eklöv, published in Science on 3 June 2016 (1). Science ran an Editorial Expression of Concern regarding the Report on 1 December 2016 (2). The Review Board’s report, dated 21 April 2017, cited the following reasons for their recommendation: (i) lack of ethical approval for the experiments; (ii) absence of original data for the experiments reported in the paper; (iii) widespread lack of clarity concerning how the experiments were conducted. Although the authors have told Science that they disagree with elements of the Board’s report, and although Uppsala University has not yet concluded its own investigation, the weight of evidence is that the paper should now be retracted. In light of the Board’s recommendation and a 28 April 2017 request from the authors to retract the paper, Science is retracting the paper in full.

Is your manuscript ready for uberized readers and radically changed journal websites?

read iwth your earsPublishers are spending millions revamping journal websites. What were formerly simple portals where you accessed articles  are being radically redesigned as online content delivery platforms. As the website for the JAMA Network of journals announced late last year:

We have aimed to make the platform more usable, discoverable, and faster on any device.

In case you haven’t noticed, many journals no longer publish articles on paper, which are bound in journals and stored on library shelves.

library shelvesMany journals still preserve the appearance of publishing articles organized in “issues” scheduled on particular dates. But articles no longer have to wait being organized in an issue. They now typically appear as quickly as possible as “early views.”

[There is a sneaky trick here. Journal impact factors are supposedly calculated based on the number of citations articles receive within two years of publishing. But Web of Science starts the two-year window from what is an increasingly artificial date of publication. Journals can exploit early views to get citations coming before that publication date. Journal impact factors can be manipulated with lots of early view articles available months before being assigned an issue and page numbers.]

You can still download old-fashioned PDFs resembling the pages of paper journals, but PDFs no longer must be papercentric, modeled after what was printed on dead trees and bound in volumes. Online enhanced content delivery platforms  increasingly offer enhanced PDFs. As described by Wiley

Whilst keeping the clear layout and simple design of the standard PDF, PDFs opened in the ReadCube Enhanced PDF format, feature hyperlinked in-line citations and clickable author details, allowing quick look up and cross reference. Supplementary information, figures and other valuable article data, are always just a click away, making it easier for researchers to discover, access and interact with our scientific literature. Integrated social sharing and social metrics data are also available from Altmetric, connecting our articles in new, innovative ways.

Wiley, like other for-profit publishers capitalizes on enhanced PDFs to make money in new ways, by providing:

More flexible options for “Pay-Per-View” journal article access, replacing our existing PPV service for individual users with affordable rental, cloud and PDF download options, ensuring we give users a range of options in how they view and access that content.

Particularly with publishers of medical journals like the American Medical Association, you may have noticed that email alerts have for a while had links for temporary free access to articles. However, when the links take you to the online platform, you find that you can’t download the PDFs without paying a fee, but must read them in the ReadCube or other enhanced PDF platform.

Scientific publishing is is also digitalized, with journals no longer accepting submissions by snail mail, but requiring that submissions be uploaded through portals like ScholarOne.

Digitalization also means that access to articles can be monitored, with readers, individually and collectively, put under surveillance concerning their viewing habits.  Once harvested , these data become extremely valuable in guiding decision-making.

Big data also provide instant feedback about what topics and what specific articles are getting attention and can even be used to make judgments about how successful particular authors in drawing traffic to their website.

In the process of converting to online content delivery platforms, publishers have followed the lead of Amazon, Netflix and Uber. Sometimes hiring programmers from these organizations , publishers have created algorithms to collect and process big data to personalize what is being offered to readers accessing their websites.

you may also likeYou may have noticed that when you access an article, it is accompanied by recommendations about other articles that may interest you.

Yup, journals are evaluating  topics and authors in terms of their ability to draw traffic to their websites, keep visitors at their websites and coming back.

In authors’ cover letters accompanying submissions, it has become strategic to inform the editor how specifically acceptance of your manuscript would serve this aim of the journal. Authors might do well to cite altmetrics of their last paper published in a journal:

Dear Editor,

We are submitting our manuscript [title] to your journal because of the extraordinary altmetrics achieved by our last paper published there.

Depending on the value editors attach to your submission, journals may expect you to collaborate with them in increasing traffic to their website, once your manuscript is accepted.

For papers promising to be particularly successful, the journals may expect you to provide press releases; write additional shorter, more engaging abstracts; and even prepare audio and video presentations and especially podcast interviews.

Over the coming months, I will be writing a series of blog posts about these huge changes in scientific publishing.

I’ll also be making available free videos about the opportunities and challenges these transformations mean for you as an author. This summer I will be releasing a web-based course of five, one hour videos entitled How to Write High Impact Papers: a Strategic Approach. I’ll still be offering live workshops, such as at the European Health Psychology Conference in Padova at the end of August, but I am seeking to reach a broader audience by going to the web. The videos will be in English, but they will have subtitles in a variety of other languages, as well as English.

screenshot me

You can sign up now for email alerts about my blogs, web-based courses, and e=books at @CoyneoftheRealm.com.

But for now, I will simply point to the temptations that the aims of these online content delivery platforms pose for authors.

van gogh grieving old man

Editor reading another cover letter saying a manuscript is paradigm-changing.

 

Editors seek manuscripts with newsworthy, attention-grabbing  story lines, not just another brick in the wall. They want claims of –God save us- paradigm-changing findings. They are less concerned what is robust and enduring, but in what draws in traffic to their platforms. Yet, so much well executed and transparently reported science does not fit this picture. Are you tempted to make your manuscript attractive in these terms, even if you have to get flexible in what data you report and how you analyze and interpret these data?

Basically, publishers are transforming their websites based on big data that suggests that if they going to maximize the success and profit, they must adapt to new readers.

These readers are being profoundly changed by mobile devices and the internet. Their behavior has been shaped by their experience with social media and digital devices. The new wave of readers is accustomed to ordering pizzas and Uber cars easily and to being guided by the ratings of other uses of these services. They expect similar experiences accessing scientific articles.

I don’t think we can ignore all this and still get the best benefit in reading and writing scientific papers.

The old ways of doing things are working less and less well.

Are you gearing your manuscripts and cover letters to the new wave of readers that publishers want to attract to their platforms and keep coming?

RCT of a positive psychology intervention for people with newly diagnosed HIV

Update April 22, 2017 8:00 As written, my post praises the trial for having being pre- registered and having a published protocol. That is expected for health psychology interventions, but  unusual in the  positive psychology literature. However, James Heathers pointed out on my Facebook page that the protocol was published 6 years after the study began. The earlier registration does not indicate the 25 outcome measures that were examined. Next time, I’ll be more careful and less trusting.

Protocols for RCTs should be published before the first patient is recruited. Not having the protocol published then opens a study to all kinds of questionable research practices -like  hiding, or switching or introducing new outcomes. I am disappointed in these investigators. 

This edition of Quick Thoughts provides a quick critical review of a positive psychology intervention for people newly diagnosed with HIV.

The trial is unusual in evaluating a positive psychology intervention in a trial with registration with published protocol.

However, the trial is ambiguously a null trial. By any conventional standards, it does not offer encouragement to pursue this line of research. The authors acknowledge in passing that is a null trial but seek to undermine that perception with presentation of results that are not significant when the multiple post hoc testing is taken into account.

  • Problems in the trial are consistent with a lot of clinical health psychology interventions:
  • Patients are asked to complete a battery of multiple, redundant outcome measures, which are a burden, but allow the investigators flexibility in picking and choosing what to emphasize in spinning results.
  • The intervention is relatively intensive, with multiple meetings required. However, new skills or techniques are presented almost every session, allowing no time for development of skills before going on to the next skill. So, the intervention is intensive, but exposure to particular coping skills is weak.
  • It is doubtful that there will be much uptake of this intervention in clinical practice with a relatively low income people who have just been told they have HIV are not being compensated. Studies like this have reasonable recruitment and retention in low income populations because low income people need the money. The benefit (or lack thereof) shown this trial would not justifying paying people to come.
  • At some point, we need to ask: for whom do we do clinical health psychology studies: patients in need of services or investigators in need of publications and justifications for the next grant?
  • This trial is not well justified in terms of benefit to patients and the explicit public health message that it shows the “promise” of such intervention package is not warranted/

The randomized trial

Moskowitz JT, Carrico AW, Duncan LG, Cohn MA, Cheung EO, Batchelder A, Martinez L, Segawa E, Acree M, Folkman S. Randomized Controlled Trial of a Positive Affect Intervention for People Newly Diagnosed With HIV. Journal of Consulting and Clinical Psychology. 2017 Mar 23.

Objective: We conducted a randomized controlled trial to determine whether IRISS (Intervention for those Recently Informed of their Seropositive Status), a positive affect skills intervention, improved positive emotion, psychological health, physical health, and health behaviors in people newly diagnosed with HIV. Method: One-hundred and fifty-nine participants who had received an HIV diagnosis in the past 3 months were randomized to a 5-session, in-person, individually delivered positive affect skills intervention or an attention-matched control condition. Results: For the primary outcome of past-day positive affect, the group difference in change from baseline over time did not reach statistical significance (p = .12, d = .30). Planned secondary analyses within assessment point showed that the intervention led to higher levels of past-day positive affect at 5, 10, and 15 months postdiagnosis compared with an attention control. For antidepressant use, the between group difference in change from baseline was statistically significant (p = .006, d = −.78 baseline to 15 months) and the difference in change over time for intrusive and avoidant thoughts related to HIV was also statistically significant (p = .048, d = .29). Contrary to findings for most health behavior interventions in which effects wane over the follow up period, effect sizes in IRISS seemed to increase over time for most outcomes. Conclusions: This comparatively brief positive affect skills intervention achieved modest improvements in psychological health, and may have the potential to support adjustment to a new HIV diagnosis. (PsycINFO Database Record (c) 2017

The study was registered with Clinicaltrials.gov (#NCT00720733.) and the protocol is here.

The primary outcome measure is positive affect. Our first aim is to determine the efficacy of the intervention for increasing positive affect at Times 2, 3, and 4. The second aim tests positive affect as a mediator of intervention effects on psychological well-being (eg, depression), health behaviors (eg, HIV transmission risk, engagement in care, medication adherence) and physical health (eg, CD4, viral load, symptoms).

Intervention

The IRISS intervention consisted of five in-person sessions and one phone session in which facilitators taught participants eight empirically supported behavioral and cognitive skills for increasing positive affect.

The intervention is summarized in a table.

folkman intervention table

Control condition

Participants in the control condition also had five one-on-one sessions with a facilitator, followed by a sixth session by phone, producing a time/attention-matched comparison condition. The sessions were comparable in length to the intervention sessions (approximately 1 hr) but consisted of an interview and did not have any didactic portion or skills practice. These sessions were designed to remove the positive affect component of the intervention, while maintaining any nonspecific effects arising from one-on-one contact with a sympathetic facilitator to share one’s personal stories and concerns.

Results

Results for psychological variables are summarized in the table below. Pay attention to the treatment x time interaction. Significance in that statistic indicates that there is an overall significant difference that can be examined in post hoc exploratory analyses. Nada, nada, all null findings despite a large number of variables being examined without correction for multiple testing.

folkman results

Beware of investigators who shift to reporting 3 digit significance levels for a secondary outcome when they are having trouble coming up with any significant differences at all.

.048

What do we make of the difference in antidepressant prescription?

Participants assigned to the control condition had a substantial increase in their antidepressant prescriptions, but not for anxiolytics. What should we make of this? Probably not much, given the multiple testing going on. But I have done trials of  interventions to improve adherence with patients with HIV/AIDS.

The rates of antidepressant prescription reported in the present study are consistent with what we observed in our study. I doubt that the prescriptions are appropriate or receive adequate follow up. It’s a common, but not evidence-based practice for infectious disease specialist trained in internal medicine, but not psychiatry, to freely provide antidepressant prescriptions without even making a formal diagnosis or asking more than a question or two.

What clinical and public policy significance do the authors claim for the study?

public health significance for Folkman study

I wish these kind of studies had a higher level of patient involvement from the outset and continuing through the write up and interpretation of data. I doubt that a investigator group that involved and listened to patients would come up with this kind of design or make these kind of recommendations, given the results that were obtained.

eBook_PositivePsychology_345x550I will soon be offering e-books providing skeptical looks at positive psychology, as well as mindfulness. Sign up at my new website to get advance notice of the forthcoming e-books and web courses, as well as upcoming blog posts at this and other blog sites.  Lots to see at CoyneoftheRealm.com.