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Distress in Cancer Patients

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Objectives Identify factors that increase a patients risk for distress in cancer patients. Describe screening methods used to aid in the assessment and identification of distress in cancer patients. Discuss interventions to manage distress in cancer patients.

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What is Distress?

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Distress: Definition in Cancer Distress is a multifactorial, unpleasant, emotional experience of a psychological (cognitive, behavioral, emotional), social, and/or spiritual nature that may interfere with the ability to cope effectively with cancer and its treatment. It extends along a continuum, ranging from normal sadness to panic and crisis. (NCCN Distress Management v. 2.2013)

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Distress Prevalence Psychological distress varies by cancer type and stage. One large study (4496 patients) reported a range of 29.6% - 43.4%. (Zabora et al., 2001) Another meta-analysis reported 30%-40% of patients with various types of cancer have some combination of mood disorder. (Mitchell et al., 2011)

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Depression and Anxiety Prevalence Reported range of depression is 20% - 50% in patients with solid tumors, but as low a 8% in some other studies. (Pasquini & Biondi, 2007) One large study of consecutive, newly diagnosed patients across cancer types found 19.0% of patients had clinical levels of anxiety and another 22.6% had subclinical symptoms (41.6% total)! Patients 50% of all cases. (Linden et al., 2012)

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History of Distress Screening

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National Comprehensive Cancer Network (NCCN) First published standards and guidelines for distress management in 1999 Not-for-profit alliance of 23 leading Cancer Centers Expert panels produce evidence-based guidelines Consensus option Revised annually Available for specific diseases and for supportive care

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Standards of Care for Distress Management: NCCN Distress should be recognized, monitored, documented and treated. All patients should be screened at initial visit and at appropriate intervals. Screening should identify level and nature of distress. Distress should be managed according to clinical practice guidelines. (NCCN Distress Management v. 2.2013)

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Standards of Care for Distress Management: IOM and ONS The Institute of Medicine (IOM) published Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs in 2008. Also in 2008, ONS published a position paper, Psychosocial Services for Patients with Cancer.

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ACOS Commission on Cancer Standard 3.2 To be phased in beginning in 2015, the American College of Surgeons Commission on Cancer (ACoS CoC) Standard 3.2 The cancer committee develops and implements a process to integrate and monitor on-site psychosocial distress screening and referral for the provision of psychosocial care. The timing of screening, method, tool used and referral process are to be determined by each program Documentation and compliance measurement must occur (American College of Surgeons, 2013)

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Implementing Screening for Distress Joint Position Statement ONS, in conjunction with APOS and AOSW, developed a joint position statement Implementing Screening for Distress (2013) Recommendations: Universal definition of distress needed Use of validated tools for screening; screen broadly without focusing on one particular symptom or one point in time Established processes for communication of results When scores > distress threshold, evaluation required with referrals for assessment and management as need as part of routine care Cancer committee rep overseeing screening program trained in identification and management of distress in patients with cancer. (Oncology Nursing Society, 2013a)

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Why is distress important? Distress influences cancer and its treatment

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Survivors tell us that their psychological concerns were as important as their physical concerns, and that they were often not recognized or addressed by their cancer care providers. (Institute of Medicine, 2008)

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Quality of Life In patients with higher distress o Functional status is often poorer o More disability seen More somatic problems are experienced, often resulting in more office visits and cost

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Treatment Adherence Depressed patients are often unable to integrate their cancer diagnosis and treatment information. They are less motivated towards self-care. They avoid health-promoting behaviors. They demonstrate social isolation. They use community resources less often. They have difficulty making plans and decisions. They have greater difficulty tolerating treatment side-effects. (DiMatteo & Haskard-Zolnierek, 2011)

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Treatment Adherence (continued) A study of 293 early-stage breast cancer patients who were treated for their depression were more likely to complete adjuvant therapy than those in the untreated arm. (Tuma, 2005)

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Survival Increased mortality is associated with cancer and coexisting depression Depression predicts mortality (Satin et al., 2009) Compliance with treatment may account for the survival differences.

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Identifying Distress

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Lifespan Risk factors for Distress Among those at highest risk for distress are: Women Young Those 80 years Poor Marginally educated Those with history of emotional / social problems (Abrahamson, 2010 )

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Increased Risk for Distress History of psychiatric disorder/substance abuse Cognitive impairment Communication barriers Severe co-morbid illnesses Social problems (e.g. family conflict, living alone, limited support, financial problems, history of abuse) Spiritual concerns (NCCN Distress Management v. 2.2013)

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Cancer Type Risk Factors Cancers with highest prevalence of psychological distress: Lung Brain Liver Pancreatic Head & Neck (Zabora et al., 2001)

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Creating a Screening Process

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Process Considerations Who will screen Screening instrument Timing: Vulnerable times (NCCN) include Finding suspicious symptom Diagnosis & workup Awaiting treatment Change in treatment modality End of treatment/ hospital discharge Recurrence or progression Referral decisions and options Documentation (NCCN Distress Management v. 2.2013)

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Screening Tools

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Impact of Screening Tools When screening for distress without using screening tool: Doctors incorrect in determining distress 35% of the time. (Fallowfield, et al. 2001) Doctors recognized severe distress 36.6% of the time. (Sollner, 2001) Providers (including nurses) did not acknowledge verbal cues of distress 43%of the time. (Kennedy Sheldon et al., 2011)

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( Reproduced with permission from the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) for Distress Management (V.2.2013). 2013 National Comprehensive Cancer Network, Inc. )

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Name of Tool# of ItemsFocus of Measurement Distress Thermometer & Problem List 0-10 rating plus 38 problems Distress and problems related to distress Brief Symptom Inventory (BSI-18) 18Somatization, anxiety, depression, general distress Hospital Anxiety & Depression Scale (HADS) 14Clinical depression & anxiety Functional Assessment of Chronic Illness Therapy (FACIT) 274 domains of QOL Profile of Mood States (POMS) 656 mood states

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PSYCH-6 Relatively new tool for anxiety and depression screening (2009) Comparable to HADS-T tool; subscale of SPHERE-12 scale Validated for use in oncology patients Shorter instrument that is very accurate (Clover et al., 2009)

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Evidence of moderate to severe distress on screening tool Assessment by a primary team clinician to determine high risk patients and Practical problems Family problems Emotional problems Spiritual concerns Physical problems Referral Social Work Mental Health Pastoral care Medical team

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Case Scenario: Mrs. J Mrs. J; a 70 year old female with a recent diagnosis of lung cancer Presents today complaining of nausea, lack of appetite, and thick, blood tinged sputum and cough Grandson drove Husband sitting quietly staring straight ahead

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Case Scenario: Mrs. J (continued) Distress score: 5 Problems identified as yes: Dealing with partner, depression, fears, worry, eating, fatigue, nausea, sleep, and getting around

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Measuring Compliance Quality Indicator examples: Medical Record should show that the patients emotional well-being was assessed within 1 month of the first visit with a medical oncologist If a problem with emotional well-being was identified, documentation shows that action was taken to address the problem, or an explanation exists for inaction. (Jacobsen, 2010)

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Suicide in Cancer Patients: Nursing Considerations

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Suicide Risk Factors in the General Population History of psychiatric disorder or substance abuse Family history of suicide Few social supports Chronic disease Pain Older age, or youth Living alone Unemployed Male gender

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Cancer Specific Risk Factors for Suicide Hopelessness Advanced stage of disease; poor prognosis Fear of the future Impaired physical functioning Time since diagnosis (risk greatest in first months) Cancer type: lung, oral, pharyngeal, prostate & pancreatic Confusion/delirium Poorly controlled pain Presence of deficit symptoms, (e.g., loss of mobility, loss of bowel and bladder control, amputation, sensory loss, paraplegia, inability to eat and to swallow) Feeling like a burden to others Loss of autonomy Desire to control ones own death (National Cancer Institute, 2013; Anguiano et al., 2011; Robson et al., 2010; Recklitis et al., 2006)

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Suicidal Thoughts Are relatively common; one review found a 21% rate of suicidal ideation. (Cooke et al., 2013) Some cancer patients experience a desire for hastened death: May be passive wish. May represent request for assisted suicide. In patients with moderate or severe distress, suicidal ideation should be addressed.

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Suicide Assessment Even when risk was identified, only 17% of oncology nurses assessed for presence of a suicide plan. (Valente, 2010) Nurses are not alone in this skill deficit. Nurses recognize they have limited skill and experience and are often uncomfortable with suicide assessment.

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Asking about Suicide Feeling down and depressed is not uncommon for people with cancer. Let me know if you need extra support, I can refer you to a counselor. Do you have thoughts of ending your own life? Some people with cancer think about suicide; please let me know if that is happening with you. You are telling me how miserable you feel. Is it ever so bad you think about taking your own life?

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Maintaining Safety Every facility must have a policy in place and method for crisis management and mental health referral.

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Psychosocial Interventions for Distress

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Many Factors Contribute to Distress Practical Concerns Family Emotional Spiritual Physical Interventions should be geared to the problem(s) identified as contributing to distress.

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ONS Putting Evidence into Practice (PEP) Interventions Goal: Identify and use evidence-based interventions for patient care and teaching Assigned to recommendation categories based on level of evidence available: Recommended for Practice Likely to be Effective Benefits Balanced with Harm Effectiveness Not Established Effectiveness Unlikely Not Recommended for Practice

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PEP Interventions: Anxiety Recommended for Practice o Supportive care Likely to Be Effective o Coaching, cognitive behavioral therapy, massage, progressive muscle relaxation, psychoeducational interventions Effectiveness Not Established o Anxiolytics, art therapy, CAM. Exercise, hypnosis, music therapy, reflexology, Reiki, TT, yoga (and others) Effectiveness Unlikely o Information and orientation (Oncology Nursing Society, 2013b)

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PEP Interventions: Depression Recommended for Practice o Individual psychotherapy and supportive interventions, psychoeducational interventions Likely to Be Effective o Antidepressant, methylphenidate, mindfulness-based intervention, relaxation Effectiveness Not Established o Aromatherapy, massage, exercise, healing touch, hypnosis, certain Selective Serotonin Reuptake Inhibitors (SSRIs) Effectiveness Unlikely o Reflexology (Oncology Nursing Society, 2013c)

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Family Member Concerns Family role changes Taking care of their own needs Maintaining open communication with the patient Fears that their own risk for cancer may be high Therefore, consider the PEP interventions recommended and likely to be effective for Caregivers: Cognitive behavioral interventions, psychoeducation, psychotherapy, and supportive skills.

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Survivor Considerations

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Distress doesnt end when active treatment ends Many patients continue treatment chronically. Distress also occurs post treatment. Integration into new normal. Adherence to surveillance demands.

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Barriers to Distress Screening and Management

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Nurse Identified Barriers include: Time to screen Privacy Authority Comfort with emotional discussions Availability of referral sources

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Oncology nurses are key to achieving quality psychosocial care for patients! We can screen, identify concerns, provide resources, and consistently convey the importance of our patients emotional as well as physical well-being. Conclusion

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Full list of references included with your handouts References

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Caryl D. Fulcher MSN, RN, CNS-BC Clinical Nurse Specialist and Team Leader Dept. Of Advanced Clinical Practice Duke University Hospital Durham, North Carolina Special Thanks: Author

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Sue Swanson RN, MS, CNS, AOCN Oncology Clinical Coordinator University of Kansas Cancer Center Westwood, Kansas Special Thanks: Expert Reviewer

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