Presented as the 8th Trevor Anderson Psycho-Oncology Lecture, September 8, 2014, Melbourne, Australia. Discusses how psychosocial care for cancer patients needs to be reorganized so that a broader range of cancer patients are served. Routine screening for distress is unlikely to be an efficient means of countering tendencies of cancer care more generally becoming more organized around time efficiency and billable procedures. Psychosocial care for many cancer patients involves discussions, negotiations, and care coordination they cannot be well fit into the idea of a counseling session. The unsung heroes of providing such care are underappreciated social workers and oncology nurses.

2. Beyond the distress screening
debacle: Rethinking, rebuilding
psychosocial care for cancer
patients
James C. Coyne, Ph.D.
University of Groningen, University Medical
Center, Groningen, NL
and
Institute for Health Policy
Rutgers University, NJ, USA
jcoynester@gmail.com

3. Special Thanks
 Josette Hoekstra-Weebers
 Christoffer Johansen
Mecheline van der Linden
 Brett Thombs
But I have sole responsibility for any excesses
or inaccuracies.

4. Screening Recommended and
Now Mandated
Despite
Lack of evidence that improves outcomes vs
patients and providers simply having access to
same services without screening.
Lack of adherence of recommendations to
standards for setting guidelines.

5. Guidelines for Guidelines
Institute of Medicine Committee on Standards for Developing
Trustworthy Clinical Practice Guidelines (2011). Clinical practice
guidelines we can trust. Washington, DC: National Academies Press.
Loblaw, D. A., Prestrud, A. A., Somerfield, M. R., et al. (2012).
American Society of Clinical Oncology clinical practice guidelines:
Formal systematic review–based consensus methodology. J Clin
Oncol, 30(25), 3136-3140.
Shaneyfelt T. In guidelines we cannot trust. Arch Intern
Med;172:1633-1634.

6. Evaluating Practice Guidelines
 Practice guidelines from professional
organizations notoriously biased and not
evidence-based.
 Standards developed for evaluating process
by which guidelines are constructed and
disseminated.
 Systemic consideration of evidence and
stakeholder involvement with opportunity to
correct.

7. Guidelines for Distress
Screening Deficient in
 Systematic review of the literature.
 Transparency.
 Composition of guidelines committee
including formal involvement of patients,
frontline clinicians, and other key
stakeholders.
 Articulation of guidelines in terms of strength
of evidence.
 External review, feedback, and revision.

8. Ne glected voices in process of deciding
that implementing screening and reduction
in distress through counseling are the
organizing activities of psycho-oncology:
Patients.
Frontline clinical staff most affected by
screening.
Primary care physicians, community
clinicians, and social services expected to
receive referrals and provide treatment.

9. Mandating Screening
Perverse incentives.
Unintended consequences.

10. Routine screening threatens to
 Aggravate existing disparities in receipt of
services.
 Further diminish and ration basic supportive
elements of cancer care.
 Accelerate trends making opportunities
scarce for patients to talk about their
concerns and limiting discussions to what is
procedural and billable.

11. Screening bureaucratizes
talking to patients
 Imposes quality indicators with weak
associations to quality of psychosocial care.
 Rations opportunities for patients to talk.
 Requires mental health backup and further
screening.
 Requires patients to have repeated
discussions in order to get their needs met.

12. Will introduction of routine
screening damage Dutch
psychosocial care?
Current Dutch Guideline: Detection of Need for Care
does not comply with proposed international guidelines
for mandated screening.
All cancer patients, not only those who screen positive
for distress, are offered opportunity to talk to a
professional about their needs and concerns, unless they
explicitly indicate they do not want to do so.

13. Should we disconnect talking to
patients and determining
meetable unmet needs from
routine screening for distress?

14. Screening is by definition rationing of patient
opportunities to talk and receive services.
If a procedure is truly screening, it involves
decision-making about access based on
scoring above some cutpoint.

15. Changes in Medical Care that
Threaten the Delivery of
Psychosocial Services to
Cancer Patients

16. An American woman Susan Krantz, received
national news attention when she complained
about her physician charging her $50 for her
having asked questions during her annual physical.
Her insurance company
paid her physician for the
physical, but not for
answering her questions.
She had not been warned
of the extra charge ahead
of time.

17. Talking to patients is not a (billable) procedure.
Conversations with the meter running.
“We’re not paid to solve
patients’ problems, we are
paid to do procedures.”

18. Emphasis on billable procedures and time
efficiency devalues extended encounters
needing to resolve complex medical and social
problems for which there are not billable
procedures within the cancer care setting.

19. Emphasis on time-efficiency and
expensive, billable procedures
Has led to withdrawal of supportive elements
from biomedical cancer care.
Has delegated psychosocial support to
undervalued nurses and social workers whose
vital work is threatened by not fitting the
dominant model.

21. The curse of getting what you
wanted.

22. Monitoring screening for distress with
quality indicators:
Pfizer gives $10 million
grant to American
psychologist to develop
quality indicators to monitor
oncologists’ screening for
distress.

23. American Mandated
Screening Practices
Oncologists cannot close their medical records
without indicating whether they have asked a
patient about distress.
Oncologists can comply with quality indicators by
asking simply “you feeling depressed?” and
prescribing antidepressants to patients who
answer “yes” without formal diagnosis, patient
education, or follow-up.

24. Depending on context,
mandated screening for
distress may
• Increase inappropriate prescription of
psychotropic medication in absence of
adequate diagnosis and follow up.
• Disrupt patients readily accessing services on
their own by consuming scarce resources and
requiring patient psychiatric evaluation for
patients who screen positive.
• Increase health disparities.

25. Learn from the disaster of
making pain the 5th vital sign
No effect on pain outcomes.
Stricter monitoring of quality of care indicators
increased prescription of more addictive pain
medication without monitoring, leading to higher
rates of addiction and death.
Large increase in costs of ineffective procedures,
notably for lower back pain.

26. Neither pain nor distressed are
Vital signs
 If someone other than the patient can’t see,
hear, palpate, percuss, or measure it, it’s a
symptom. Anything that can be perceived by
someone else is a sign.
 Vital signs are measured…and yield numeric
results. Normal ranges are defined; values
that fall outside those normal ranges are
described with specific words (eg,
bradycardia, tachypnea, hypothermia,
hypertension).
-Lucy Hornstein

27. Evaluating Screening for
Distress
 Screening for distress is useful only to the extent
that it improves patient outcomes beyond any
detection and treatment that is already provided as
part of existing standard care.
 Screening program must identify a significant
number of distressed patients who are not already
recognized, engage those patients in treatment,
and obtain sufficiently positive outcomes to justify
costs and potential harms from screening.

28. Our Formal Evaluation of
Screening for Distress
Adopted the analytic framework of the U.S.
Preventive Services Task Force (USPSTF) in
searching for evidence of
(1) the efficacy of interventions for reducing
distress; and
(2) the efficacy of routine screening in
reducing distress among cancer patients.
.

29. Conclusion: Treatment studies reported modest improvement in
distress symptoms, but only a single eligible study was found on the
effects of screening cancer patients for distress, and distress did not
improve in screened patients versus those receiving usual care.
Because of the lack of evidence of beneficial effects of screening
cancer patients for distress, it is premature to recommend or
mandate implementation of routine screening.

30. Hart, et al. (2012) "Meta-analysis
of efficacy of
interventions for elevated
depressive symptoms in
adults diagnosed with
cancer.” Journal of the
National Cancer Institute
104:13: 990-1004.

31. .
Hart S L et al. JNCI J Natl Cancer Inst 2012;104:990-1004
© The Author 2012. Published by Oxford University Press. All rights reserved. For Permissions,
please e-mail: journals.permissions@oup.com.

32. 3 comparisons classified as “psychotherapeutic”
were complex collaborative care interventions for
depression emphasizing medication management.
These studies provided the bulk of the 527
patients in the authors' calculation of the effect
size for psychotherapeutic intervention.

33. Of the 2 remaining studies, 1 randomly
assigned 45 patients to either problem-solving
or waitlist control and retained only 37 patients
for analyses.
Final study contributed 2 effect sizes based on
comparisons of 29 patients receiving CBT and
23 receiving supportive therapy to the same
26-patient no-treatment control group, thus
violating the assumption of independence of
effect sizes.

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35. Why is there so little evidence?
Almost all studies of psychosocial interventions
targeting distress do not include having elevated
distress as entry criteria.
Most patients entering such trials are not
sufficiently distressed to register a signficant effect
(floor effect).
Most trials claiming efficacy depend on post hoc,
underpowered comparisons of outcomes selected
after results were known.

36. Policy decisions we must face
What are we going to do about considerable
proportion of patients who want counseling,
but do not have a diagnosable condition?
Is it against patient interests to classify
opportunities to talk as treatment?
What are the unintended consequences of
conceptualizing talk as treatment?

37. Bias in assuming that most
cancer patients who want to
talk want counseling.
“Interventions usually assume one of four
common forms: psychoeducation, cognitive-behavioural
training (group or individual), group
supportive therapy, and individual supportive
therapy.”
Carlson et al, Brit J Cancer, 2004.

38. Four other systematic
reviews
Variously indicate that
Screening may improve communication
between patients and clinicians.
Stimulate discussions of psychosocial and
mental health issues increase referrals to
specialty services.

39. Referral: A problematic surrogate
outcome
Making a referral unlikely to lead to improved
patient outcomes.
Many referrals not completed or for only one
session.
Large social disparities in patients’ ability to
complete referrals and receive adequate
exposure to care.
Care in community often not adequate in
quality, intensity, or follow up.

40. Screening consecutive patients can
be an extremely inefficient way of
getting cancer patients into
counseling/psychotherapy.

41. Screening of consecutive cancer patients to recruit for
a RCT too inefficient to be recommended.
4% of 970 patients consented to trial participation.
27 patients needed to be screened to recruit a single
patient.
17 hours staff time required for each patient recruited.

42. What went wrong?
Most patients who were distressed were
either already receiving services or did not
want them.
 Simply asking patients if they wanted a
discussion or services before screening
would greatly increase efficiency of
screening.

43. Pseudo-science of cutpoints
 Unrealistic expectation a single cut point
valid across cancer sites, demographics, and
treatment settings.
 Most validations are with the HADS as “gold
standard.”
 Low sensitivity, specificity when used to
predict new uptake of services.
 Adequate validation study would exclude
patients already receiving services and those
uninterested.

44. The yield of screening is greatly
reduced when we take in to account
the large proportion of patients –
Who are not interested in services.
Who are already getting them elsewhere.
 For whom the services needed are not
available through the cancer center or readily
coordinated from there.

45. Inconvenient findings
 Distressed patients more likely to seek
counseling, but most patients seeking
counseling are not distressed.
Most distressed patients who are not in
counseling do not want it.
Most patients receiving mental health
services after a diagnosis of cancer have
previously received the services.

46. Value of screening assumes
alignment of patients
Wanting help (felt need).
Scoring above a clinical threshold on a
screening questionnaire (normative need).
Seeking referral to psychological services
(expressed need).

47. Distress Thermometer vs Patient
Preference
Distress thermometer depends on patient
self-report.
Most patients told they need psychological
counseling on basis of score above cutpoint wil
disagree.

48. Rather than screen--
 Allow any patients who want to talk an
opportunity to do so and renew offer often.
 Ask patients if they wanted to know about
available services, have needs for which
these services might relevant.
 Refer only if they were interested in services.
 Follow up to ensure outcome.

49. Distress redefined
“An unpleasant emotional experience of a
psychological, social and/or spiritual nature
which extends on a continuum from normal
feelings of vulnerability, sadness and fears to
disabling problems such as depression,
anxiety, panic, social isolation and spiritual
crisis.”

51. Overly broad definition of
distress
The expansion of the concept of distress
provides an incoherent, unmanageable, and
scientifically unmeasurable goal for the
organization of psycho-oncology.

52. Evaluating Screening for
Multiple Problems
 Preventive services interventions in PC provide
a model for evaluating screening for multiple
needs.
 PCPs encouraged to screen for many different
conditions, some with psychosocial components
(e.g., depression, intimate partner violence,
alcohol abuse, smoking).
 Impossible to determine which screening is
beneficial and cost-effective, unless each
evaluated separately.

54. What we can learn from
literature concerning
screening for depression
in medical settings?

56. Conclusions of Review
 No trials have found that patients who undergo
screening have better outcomes than patients who do
not when the same treatments are available to both
groups.
 Existing rates of treatment, high rates of false-positive
results, small treatment effects and the poor quality of
routine care may explain the lack of effect seen with
screening.
 Developers of future guidelines should require
evidence of benefit from randomized controlled trials
of screening, in excess of harms and costs, before
recommending screening.

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Screening must be delivered in a well functioning
total system if it is to achieve the best chance of
maximum benefit and minimum harm. The system
needs to include everything from the identification of
those to be invited right through to follow-up after
intervention for those found to have a problem.

58. What can we learn from a RCT
of Dignity Therapy?

59. First randomized control trial of
Dignity Therapy.
Goal was to determine if dignity therapy (165
patients) would outperform standard care (140
patients), or client centered care (136 patients)
on 23 measures of psychological, existential
and spiritual distress.

60. No superiority of dignity therapy to client
centered counseling or standard care on any of
the 23 measures of distress.
Some indication of a floor effect: representative
sample of palliative care patients were not
sufficiently distressed to register any benefit or
difference between conditions.

61. With the increasing scarcity of talk time in routine care,
patients are simply seeking a safe place where they will be
listened to, and can express and reflect on their feelings,
not necessarily solve problems or reduce distress. That can
be an entirely valid goal in itself.
Problems arise when these discussions are of necessity
provided only as treatment with mental health
professionals.
Issues of cost effectiveness and efficacy arise, for which
formal evidence is required. And such treatment is typically
in short supply, with long waiting lists.

62. Billable procedures require a
diagnosis

63. Should patients have free
access to yoga?
Is yoga an evidence based
treatment?

64. Can ask for evidence whether typical cancer
patient attending yoga class obtains reduction
in distress or sufficient exercise.
Can inform patients of evidence.
Can test whether there is anything distinctive
about yoga beyond group breathing and
stretching exercises.

65. But such evidence not necessarily relevant to
patient preference for yoga classes.
Yoga currently a class, not a treatment.
Pitfalls of making it a treatment.

66. Thinking beyond the
mandated screening debacle

67. Restatement of Problem
Diffuse, informal support and reassurance is
already eroding in routine cancer care.
Patients want to talk about implications their
diagnosis and treatment of cancer.
Minority want formal counseling or
psychological therapies but some need more
intensive services and follow up.
Pastoral counselors, peers in similar
predicaments, GPs as preferred as mental
health services.

68. Restatement of Problem
Distress weakly related to interest in service not
already being received.
Most persons interested in services are not
distressed.
Within limits, distress should not be basis for
rationing.

69. Restatement of Problem
Many patients—particularly the older and
socially disadvantage—have needs that cannot
readily be addressed at the cancer center.
Cancer and its treatment disrupt existing the
medical care and social services.
Rather simple referral, these patients need
discussion, advocacy, negotiation, care
management, and follow up.

70. Mental Health Problems
Given clinical epidemiology of mental health
problems, those arising in cancer care are likely
to be recurrences in patients with a relevant
history of treatment.
Cancer and its treatment disrupt treatment.
Physical co-morbidity affects course and
continued risk for mental health problems.

71. Mental Health Problems
Monitoring and follow up more of a priority than
detecting new cases and subjecting them to
poor follow up in routine care.
Routine care for mental health problems
abysmal and probably worsened by cancer.

72. Thank you!
jcoynester@gmail.com
Follow me on Twitter
@CoyneoftheRealm
Blog: Mind the Brain