Where’s the evidence that screening for distress benefits cancer patients?

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A slide show and annotated commentary….

Professional organizations have gone from recommending routine screening of cancer patients for distress to mandating that screening be implemented in US cancer care settings as a condition for accreditation. Yet screening has not yet been shown to be an evidence-based practice.

As with any other medical procedure or re-organization of services, the burden of proof lies with those who recommend screening, not those who remain skeptical.

As I argue in this slide presentation, there is a lack of  evidence that screening improves patient outcomes or is cost effective, relative to other uses of the same resources. Moreover, screening threatens to

  • Impose rationing of services and even the opportunity for patients to discuss problems.
  • Denial access to services to the many patients who currently seek them but who are not distressed.
  • Aggravate the social inequalities that already existed in which patients get services.
  • Increase inappropriate prescription of antidepressants to cancer patients who have not been formally diagnosed as depressed and who will not receive follow up.

Screening for distress should only be mandated if there is solid evidence that patients will benefit with reduced distress.  Such evidence would come from randomized trials in which patients receiving screening would be compared to patients having access to the same resources without being screened.

Thus, the comparison group would involve patients simply to have ready opportunities to talk with professionals or peer counselors and to be able to refer themselves or ask to be referred to the services that interest them—without first having to be  screened.

My colleagues and I conducted a systematic review and failed to find sufficient evidence to recommend screening.

Screening  for distress is always a two stage process.

distress thermometerCancer patients first complete a paper questionnaire or interact with a touch screen. If they indicate enough distress as defined by some cutpoint, they go then receive a follow up interview for their responses to be interpreted.

In practice, this two stage screening process can prove to be just another barrier to patients getting their concerns heard, their needs addressed. In the typical screening procedure, patients may have to explain themselves at least twice, once to the interviewer and then to whomever they are referred to get their problem addressed.  And if patients have a particular problem they want to discuss but do not meet the threshold for being considered distressed, they may not to get to discuss it.

As it is increasingly becoming apparent, the necessary second step of screening takes the dedicated time of personnel who have been trained to interpret screening scores and discuss options with patients.  These staff might more usefully be put to serving other purposes.

The slide show

This slide show is my presentation in a debate with UK psychiatrist Alex Mitchell UK at the International Psycho Oncology Conference, Rotterdam, November 7, 2013.

The debate is a rematch.

On September 18, 2012 at the European Cancer Rehabilitation & Survivorship Symposium (ECRS) in Copenhagen, Dr. Mitchell and I had a very lively, but cordial debate over whether screening improves patient outcomes.   The conference room was packed despiteECRSx the 8 AM start.

We were selected for the debate in Copenhagen to represent opposing viewpoints. Yet, we found surprising agreement that there was no strong evidence yet that screening would reduce patient distress.  I would agree with, but amplify Dr. Mitchell’s conclusion from Copenhagen:

… Screening for psychological distress holds promise and is often clinically valuable, but it is too early to conclude definitively that psychological screening itself affects the psychological well-being of cancer patients.

Dr. Mitchell nonetheless argued that implementing of screening would improve patient-clinician communication and increase referrals. I argued that these were not suitable surrogate outcomes if the real question is whether having screening implemented lowers cancer patients’  distress.

Better communication doesn’t guarantee that patients will be less distressed, unless barriers can be overcome to their getting timely and affordable  services consistent with their preferences. We know too well that patients often do not complete referrals and services are either expensive or have long waiting lists or not responsive to their needs. Even when services are free or low-cost, there are substantial social inequalities in accessing them, with the rich and well educated getting more access than the poor or on educated.

After the debate, Dr. Mitchell and I were invited to submit papers based on our presentations to Acta Oncologica.  Dr. Mitchell’s published paper is available here.

However, my invited paper was savaged by a reviewer who at the outset of his review announced his bias against anyone arguing that screening had not been  shown to patient outcomes. The reviewer essentially demanded that I express allegiance to the prevailing dogma.

I informed the journal that I was withholding my invited paper until the reviewer was chastised (I could identify who he was, despite the anonymous review). I requested additional reviews, but again the reviewers objected to my not expressing support for recommendations for screening about which there was such consensus.  They did not really dispute the evidence that I presented, but only objected  that I was criticizing the accepted view in ways that might  damage efforts to implement routine screening.

I would’ve hoped that it would be evidence that matters most, not some consensus among professional groups with obvious conflicts of interest in advocating procedures that increased demands for their services.

I appreciate the international and local Dutch organizing committees’ invitation to Dr. Mitchell and me to hold a rematch in Rotterdam. I know there was some opposition to this occurring. And it has become all too unusual for journals or professional gatherings to have open debate over whether screening cancer patients for distress is a good idea.

The powerful lobbies for screening, now with support from the pharmaceutical industry, get ready access to journals without the usual peer review. They are able to enforce recommendations for screening appearing in the discussion sections of published papers, even when what is presented in the results section provides  a striking contradiction.

Recently, authors got an article accepted at the prestigious Journal of Clinical Oncology showing that screening produced few referrals for psychosocial services and was not cost effective.  When the article was published, it was accompanied by an editorial from a leading proponent of screening that trashed it. The authors were neither informed nor offered an opportunity to respond.

Despite the enforcement of a strict pro-screening bias on what gets published and how the evidence is interpreted, I think ultimately the evidence will get out that implementing screening for distress does not improve patient outcomes. However, in the meantime I have serious concerns about the distortion and even corruption of the editorial processes of the journals of the field.

When the battle over screening is finally resolved, there will be a lot of work to do in rebuilding the credibility and integrity of the editorial and peer review processes of psycho-oncology.

If I have sparked your interest, please click on the embedded slide presentation above  and you can view the actual slides that I present in a rematch with Alex Mitchell in Rotterdam on November 7, 2013.

At my secondary blog, there is a new posting that provides rich citations and annotation for points made in the slide presentation. Once there, you will be able to click to retrieve the abstracts of the papers that are being cited or the actual papers. In some instances the hyperlinks take you to blog posts where there is more material available.

I welcome your comments and I hope that you and your colleagues and your students find this presentation helpful and that it stimulates debate about screening.evidence based

 

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8 Responses to Where’s the evidence that screening for distress benefits cancer patients?

  1. Liz says:

    Off hand I’d say that some level of distress is experienced by 99% of newly diagnosed cancer patients. For many/most of them this is an emotional earthquake. However they are often in shock, dealing with the immediate problems of getting initial care and the symptoms that they notice – or not – of emotional distress may not kick in until after they are over that initial hump (family/friends may initially notice distress reactions like a short fuse that the patient may not see in themselves until later). Others initially cope with stress by denial of the distress… As a result I can understand why screening may miss people who need help if you screen them at the “wrong” time; how different people’s coping mechanisms or upbringing about presenting the “stiff upper lip” in times of crisis, etc. may disguise/underplay their level of their distress… Those folks, who may need help, will be missed by many screening tools… Not to mention no psychological tool has even close to a 100% correlation with what they are trying to measure and so to screen people out from getting help based on just a tool doesn’t make sense.

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    • Liz, your assumption that 99% of newly diagnosed cancer patients are distressed can be tested. When distress levels are examined in consecutive patients, 35-45% have some significant distress. Much of this passes without formal intervention, some of this distress is quite responsive to more support and information. About 8-15% of cancer patients will accept more specialized psychosocial and mental health services, not much more than the rates of services being received before cancer was diagnosed.

      The question is whether routine screening can appreciably increase receipt of services and thereby reduce distress. I don’t see demonstrations that it does, and that is what my blog post and slides are about.

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  2. Pingback: References for “Where’s the evidence that screening for distress benefits cancer patients?” | Quick Thoughts of Jim Coyne

  3. It seems we’re looking at this issue from a back-asswards perspective. We experience the same conundrum in cardiology, a field I’ve become intimately familiar with since surviving what doctors still call (despite its misguided gender-specificity) the “widowmaker heart attack”.

    Mayo Clinic cardiologists, for example, now estimate that up to 65% of heart attack survivors experience significant symptoms of depression and anxiety, yet fewer than 10% are appropriately identified. As Dr. Sharonne Hayes, founder of the Mayo Women’s Heart Clinic, once explained these stats like this: “Cardiologists may not be comfortable with ‘touchy-feely’ stuff. They want to treat lipids and chest pain. And most are not trained to cope with mental health issues.”

    Thus cardiologists continue to ignore the vast majority of their patients who suffer in silence as I did – and even, in fact, when we admit our reality. When, in abject desperation, I finally asked my (now former) family doctor to please refer me to talk therapy, I learned that she was not a personal fan of such therapy and – because she had known my high-energy successful self for 30+ years prior to my MI – continued to insist that I “of all people” should somehow be able to pull up my socks and just get on with it, that I was lucky to be alive, that I should be suitably grateful for having survived what so many do not. When I managed to overcome my own shame and embarrassment in order to share the same distress during a follow up appointment with my cardiologist, he mused: “Well, of course, it could just be the beta blockers you were prescribed after your heart attack…”

    Had screening been routinely available, never mind mandatory, it may have been possible to bypass ignorant dismissals like these. It’s hard enough for patients on their own to get through the denial and stigma of admitting mental health issues.

    As for demanding randomized clinical trials demanding proof that “patients will benefit with reduced stress”, it reminds me of Chochinov’s groundbreaking work in end-of-life care in which – news flash!! – his published research “proved” that patients feel better when their doctors listen to them.

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    • Unfortunately, there is a lack of evidence that screening for depression improves the outcomes of cardiac patients. Our earlier systematic review in JAMA failed to find evidence that screening for depression was useful and ended up winning recognition from BMJ as one of the 8 best papers of the year.

      Available at this link http://jama.jamanetwork.com/article.aspx?articleid=182852

      We subsequently challenge the evidence base of guidelines from the American Heart Association American psychiatric Association. I believe these guidelines lead to increased prescription of antidepressant medication, but without adequate diagnosis or follow-up

      Available at this link hhttp://content.onlinejacc.org/article.aspx?articleid=1140008

      A recent updating of our original JAMA review failed to find new evidence that screening improved cardiac outcomes.

      NIH spent over $30 million on the ENRICHD trial that failed to show that enhance management of depression in cardiac patients reduce heart attacks or extended survival.

      I agree that we can do a lot better integrating support and reassurance into the care of cardiac patients, but I worry about ineffective prescription of antidepressants without proper diagnosis and follow-up.

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      • Liz says:

        Perhaps though an outcome you appeared not to measure in that study, one that might matter to the patients even if it does not improve the outcomes you were looking at (and yes I agree those matter too – the flip side of that message is that state of mind doesn’t affect outcomes so all the folks you try to convince you that attitude matters – thus you feel guilty if you can’t make yourself have a good attitude – are wrong LOL) is then not being depressed and having some joy in their life, …

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      • I too worry about wholesale prescription of antidepressants based only on tickbox diagnostics, but there are many non-drug ways to address depression and anxiety in heart patients (and others). For example: http://myheartsisters.org/2011/08/05/non-drug-therapies-for-depression-in-heart-patients/

        I worry more, however, about the reality that mental health issues are already being systematically dismissed by physicians and denied by ashamed patients themselves even as they struggle to cope – as suggested by the Montreal Heart Institute’s report that depression after an MI is in fact a significant predictor of 18-month post-MI cardiac mortality.

        And the quality of life issue here is being ignored as well. Debilitating mental health symptoms make us less likely to engage in prescribed activities like drug compliance, exercise, diet, medical follow-up and other cardioprotective lifestyle recommendations.

        Even if these mental health issues don’t kill you after a traumatic medical crisis, the day to day misery of declining quality of life can make life seem hardly worth living.

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  4. Ken Martin says:

    Dear Dr. Coyne,

    I think I agree with both of you. One of my frustrations with the College of Surgeons Commission on Cancer is that they required Oncology Nurse Navigators and Cancer Survivorship Care Plans as a part of accreditation by the years 2015 and 2014 respectively, yet with little evidence to support either. Furthermore, there are no standard training programs or accreditations for Oncology Nurse Navigators. At times we seem to be in a rush to mediocrity in oncology.

    However, with quality of care becoming important for physician reimbursement, it would certainly be in the best interest of oncologists to choose a qualified navigator. In fact, I spoke to an oncologist this week who said referrals at one practice had gone up 400% after hiring an oncology nurse navigator.

    The biggest issue I hear and read from cancer survivors is diagnosis shock, and then the subsequent overwhelming decision process and steep learning curve. In my opinion, even though I am an exercise-oncology advocate, the first thing that needs to happen in the cancer survivorship continuum is some type of psychosocial intervention being offered, if not insisted or scheduled, for those newly diagnosed. Patients don’t know what they don’t know, and many of us reflect back and realize what would have been beneficial at the start of our journey.

    Unfortunately, the Cancer Survivorship Care Plans are focused on transferring care from the clinical oncology team to the primary care physician, they do not begin at diagnosis as per the definition of ‘survivor’ according to the
    National Coalition for Cancer Survivorship and the NCI Office of Cancer
    Survivorship. Family members, friends, and caregivers are also impacted
    by the survivorship experience and are therefore included in this
    definition. At diagnosis is when planning really needs to start.

    From a post this week on a survivor message board:

    ‘Serendipity sums up our experience. When going through CAT scan and being told that they have scheduled an appointment with a gynecological oncologist you are filled with questions and apprehension and you are emotionally unstable. And yet you are like flotsam and jetsam, cast to the vagaries of the wind and currents. I was thankful that we were going in a direction but there was little control we had in the decision making process. There is no emotionally detached advocate to steer you down the proper path that resonates with YOU as a patient. Like the deer in the headlights, you know on an intellectual level that you should be taking some sort of action but damn, look at that bright light. You just can’t move. I think it would be a great practice is to have a well-informed, well-trained advocate employed by the hospital to facilitate the decision-making process armed with resources and ‘roadmaps’ for patients being delivered unto the great confusing unknown.’

    I also spoke with a passenger on a plane this week who brought up her breast lump, and how waiting one week for results was the longest week of her life, fraught with fear and anxiety. The Finns begin survivorship care at symptoms. What all that entails I do not know, but my personal experience was that the sooner I wrapped my head around my own cancer situation the sooner I started sleeping through the night and planning my wellness strategy.

    Thank you for your efforts in the debate, and good skill to you should another one happen. I’m not a big psychosocial advocate, I think we complicate it too much, and with loose theories. But I do think that emotional health impacts treatment strategies and plans. I’d like to see patients start an exercise strategy once they are diagnosed, if not before, however, diagnosis shock often renders plans useless if patients are overwhelmed emotionally.

    Kindly,

    Ken Martin
    Founder
    WorkOut Cancer research fund
    Hodgkin’s Lymphoma survivor
    Follicular non-Hodgkin’s Lymphoma survivor
    Diffuse Large B Cell Lymphoma survivor
    Stem cell transplant recipient
    1984, 1985 US marathon champion
    American College of Sports Medicine
    http://workoutcancer.org/Home.html
    contact@workoutcancer.org

    Don’t just survive …. thrive!

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