Unmet Needs across the Unmet Needs across the Lifespan: the Case against Lifespan: the Case against

Routine ScreeningRoutine Screening

Second Annual Victorian

Psycho-Oncology Research Conference

September 5, 2014

James C. Coyne, Ph.D.Health Psychology Program, UMCG/University of Groningen

andInstitute for Health Policy

Rutgers University, NJ, USAjcoynester@gmail.com

Depending on Screening to Improve Psychosocial Services

Falsely assumes the way forward is in detecting distress and making a referral to counseling.

Perpetuates a YAVIS bias in design and receipt of services.

Will aggravate existing life-stage disparities in receipt of care.

Will force the unsung heroes of psychosocial care into less useful activities.

The YAVIS Bias

Young,

Attractive,

Verbal,

Intelligent patients Successfully coping with cancer

Young to middle-aged women with early-stage breast cancer

Rewarding to work with because tend to be successfully coping with their diagnosis and disease.

Distressed due to the threat of cancer and its treatment to life-stage tasks. 

Attracted to counseling, typically coming without elevated levels of distress, and much of their distress is resolvable over time, regardless of whether they received formal psychosocial treatment.

Because of a YAVIS bias in recruitment, most RCTs cannot demonstrate efficacy of intervention if results are transparently reported with adherence to reporting standards (CONSORT).

Trajectories of Distress

Much of the heightened distress reported by cancer patients is self-limiting or resolves within routine cancer care without specialty psychosocial or mental health services.

Different Patterns of Adjustment

30

35

40

45

50

55

60

65

Diagnosis 3 Months 6 Months

Cut Point

Never Disressed

Resolved Distress

Chronic Distress

Never Distressed 52% of sample; No Elevations over time

Resolved Distress 36% of sample; Elevated distress at diagnosis that resolves by 3 months

Chronic Distress 12% of sample; Elevated distress at all times

Rate of overall decline in distress in routine care dwarfs any differences among conditions in screening studies.

Many of the minority of patients with persistent distress have prior problems or non-cancer related problems.

Deferred diagnosis of mild mental disorder, supportive action

(stepped diagnosis, stepped care)

On the other hand, be alert to the early emergence of psychiatric disorder, particularly among patients with a past history

•Vegetative symptoms such as psychomotor retardation, extreme insomnia.

•Pathological guilt and excessive self-blame.

Benefit-Finding Therapy

No evidence that pursuing benefit finding or post-traumatic growth improves patient outcomes, but acceptance of these goals makes working with them more rewarding.

Inverse Care Law

Cancer patients recruited to psychosocial services will tend to have the mildest and most resolvable complications of diagnosis and treatment of cancer, particularly if the services are framed as counseling.

Lung cancer has the highest incidence of any non-skin cancer affecting both men and women and is the leading cause of cancer death.

Yet lung cancer patients receive almost none of the attention that breast cancer patients get in terms of their psychosocial needs.

Lung cancer patients have among the highest levels of psychological distress, yet lung cancer patients are the lowest utilizers of support groups and similar services.

Lung CancerLung Cancer

The gap between number of lung cancer patients with elevated distress and those receiving services is unlikely to be closed by screening and referral to counseling.

45% of distressed patients received mental health care since their lung cancer diagnosis.

58% wanted to independently manage emotional concerns.

57% did not perceive the need for help.

  75% preferred talking to a primary care physician if they were to

have an emotional concern.

42% received mental health services prior to their lung cancer diagnosis.

33% reported that they had received mental health services since their lung cancer diagnosis.

Mosher, Catherine E., et al. "Economic and social changes among distressed family caregivers of lung cancer patients." Supportive Care in Cancer. (2013) 21 : 819-826.

74% of distressed caregivers experienced one or more adverse economic or social changes since the patient’s illness.

56% disengaged from most social and leisure activities. 45% employed caregivers reduced hours of work. 18 % quit work or made another major lifestyle change due to

caregiving. 28% reported losing the main source of family income. 18 % reported losing most or all of the family savings.

Questionable assumptions

Heightened distress represents a meetable unmet need not otherwise being addressed.

The modal distressed cancer patient is in need of psychotherapy/counseling which s/he does not seek because of fear of stigma.

The critical juncture in getting from a patient with meetable unmet needs to improved outcomes is detection and referral.

Without evidence, the concept of stigma is being invoked to

•Undermine patient empowerment.

•Resolve differences of opinion between patients and professionals as to need for mental health services in favor of the professionals.

•Push patients who just want an opportunity to talk into billable procedures called therapy sessions.

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.

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.

Overcoming barriers to older, sicker patients receiving needed services require navigating and negotiating bureaucratic hurdles that cannot not accomplished in billable, accountable “sessions”.

The illusion that making a referral is sufficient further disadvantages them and aggravates existing biases in receipt of services.

Older cancer patients experience less distress, but their distress is more likely to represent complex medical co-comorbities, social problems, and chronic recurring mental disorders.

Addressing meetable unmet needs of older cancer patients requires extended discussion and negotiation to achieve care coordination.

.

• Cancer is less disruptive of social roles such as parenting and employment.

• Greater acceptance of mortality, inevitability of end-of-life.

• Diagnosis and experience of cancer interpreted in the context of larger physical co-morbidities.

Different themes for older cancer patients:

•Patients’ perception of effects on family members: family burden.

•Lost opportunity to witness family transitions;

•Widowhood and social isolation (important predictors of non-remission of clinical depression).

The miserable and invalid Hospital Anxiety and Depression Scale

Factor structure does not support separate anxiety and depression subscales.

Depression items represent biased attempt to assess anhedonia and neglect demoralization.

Depression items work less well with older patients.

Bewildering, disorienting switch from item to item in terms of item reversals, response key reversals, and other changes in the response key.

• Anhedonia

• Apathy

• Pain, fatigue masqueradingas depressive symptoms

The Hospital Anxiety and Depression Scale (HADS) should not be used

Coyne JC, van Sonderen E: The Hospital Anxiety and Depression Scale (HADS) is dead, but like Elvis, there will still be citings. Journal of Psychosomatic Research. 73:77-78.

It is controversial whether cancer is associated with psychiatric co-morbidity more than with other physical health conditions.

The challenge is making a diagnosis and ensuring adequate follow up within the competing demands of dealing with a life-threatening condition.

• 25 studies

• Antidepressants more efficacious than placebo at 4-5, 6-8, and 9-18

• Superiority over placebo is apparent within 4-5 weeks and increases with continued use.

A key issue in the management of depression among elderly cancer patients is not the availability of efficacious treatments, but ensuring their effective delivery and follow-up.

In the case of cancer, attention to depression is often sacrificed to the competing priority of dealing with the cancer, despite the reduction in morbidity that would be achieved by effective treatment of depression.

In general, major depression in the context of a general medical condition has longer episodes and a greater likelihood of relapse and recurrence.

Effective care for depression requires accurate diagnosis, monitoring and follow up.

Routine care for depression in general medical settings typically no better than receiving placebo in a clinical trial.

Estimated that 40% of general medical patients receiving treatment for depression achieve no benefit over remaining on waiting list.

Many depressed patients do not renew prescriptions.

About half require dosage adjustment, medication changes, or education about adherence at five weeks to achieve benefits.

Rather than routinely screening patients for depression and placing them in inadequate routine care without follow-up:

•Concentrate on ensuring better follow-up care for known cases of

depression

•Concentrate on patientsat high risk for depression

Don't neglect needs of informal caregivers.

Initial symptomatology of women is higher than men, regardless of whether they are patients or spouses.

Recommendations

Detach opportunities for discussions from patients having to be distressed.

Make decisions about services and staffing based on accurate information about meetable unmet needs.

Protect patients, particularly older patients’ opportunity to discuss their needs and cancer experience without rationing according to whether they are distressed.

Recommendations

Give appropriate respect to the frontline nurses and social workers who deal with non-YAVIS patients in discussions they cannot be reduced to timed sessions.

Pay attention to the difficulties obtaining the monitoring and follow-up, including attention to risk of relapse, that dealing with the psychiatric disorder of older patients requires.

Stop accepting the concept of “stigma” in place of trying to understand why most patients are not interested in formal mental health services.

Thank you!

jcoynester@gmail.com

Follow me on Twitter@CoyneoftheRealm