2) How do you know when your distress is normal or more serious?
Distress is a term to describe unpleasant feelings or emotions that interfere with your ability to cope with cancer, its physical symptoms, and/or its treatment. Distress is a normal response when you or a family member receives a diagnosis of cancer. Distress covers a wide range of feelings, from powerlessness, sadness, and fear to depression, anxiety, and panic. Sometimes certain signs or symptoms may be present that could raise a "red flag" that distress is becoming excessive:
· Feeling overwhelmed by fears to the point of panic or an overpowering sense of dread
· Feeling so sad that you feel you cannot go through treatment
· Unusual irritability and anger
· Inability to cope with pain, fatigue, nausea
· Poor concentration and sudden memory problems
· Having a difficult time making decisions
· Feeling despair, hopelessness, wondering is there is any point to going on
· Constant thoughts about cancer and/or death
· Trouble sleeping (less than 4 hours)
· Trouble eating (a noticeable decrease in appetite, or no appetite, for a period of weeks)
· Family conflicts and issues that seem impossible to resolve
· Feeling worthless, useless
3) Do all cancer patients now have access to psychosocial care? If not, what are the barriers?
It is clear that establishing guidelines alone is not sufficient to change care. To implement guidelines at the clinical level, several barriers to psychosocial care must be overcome: busy outpatient clinics and offices; poor reimbursement for mental health services; no standard way to query psychosocial needs quickly in daily practice, and the stigma attached to psychological issues. Due to these primary barriers, psychosocial care is not routinely and consistently implemented in routine cancer care:
– In spite of NCCN Guidelines and the IOM report (See Question 6), only 20% of NCCN member institutions screen patients for distress as recommended by the guidelines (1)
– Only 50% of the responders in an oncologists' survey reported having any mental health services affiliated with their practice (2)
– More than 60% of survivors in a recent study reported that their physician lacked complete knowledge of how their quality of life had been affected by their cancer and its treatment, and more than 75% of survivors perceived their physician to have a less than ideal understanding of them as people (3).
4) What happens if a patient cannot find a mental health professional with cancer experience in their area?
APOS (The American Psychosocial Oncology Society (APOS) operates a nationwide helplineto assist cancer patients and their families identify local counseling services. The APOS Referral Helpline (1-866-276-7443; www.apos-society.org) is used not only by patients (53.7%) but also by friends and family members (35.3%) who are seeking help for loved ones, as well as healthcare professionals (6.8%) and other national and local organizations (3.2%) hoping to find help for patients. The Helpline also assists advocacy organizations in handling calls for help when the caller has significant psychological problems or distress. Advocacy organizations provide an important free resource for counseling (individual and group) but these services are not found in many geographic areas. APOS has built alliances with these organizations, which now call regularly for assistance and serves as a bridge between the advocacy support available through these organizations and the local counseling services people may need but do not know how to access.
5) How can Advocacy groups help raise the awareness of the importance of getting psychosocial support for cancer patients?
1) Educate your members: Ease fears and misconceptions about mental health counseling It should be available for all cancer patients. The IOM has issued a report saying that psychosocial support is just as important as chemotherapy. It should be an integral part of cancer patient care. There is evidence-based data showing that psychosocial interventions are helpful for the distressed cancer patient.
2) Educate oncologists. Speak up for the patient's need for psychosocial support and his/her right to have access to this resource as part of their routine cancer care. Cancer patients should be screened for distress as part of routine care. If stress is above a level 4 on the distress scale, patients should be evaluated and referred to appropriate services.
3) The more you can do to raise the awareness in the oncology community that psychosocial care should be integrated into standard cancer care, the more will be done about it. Don't be afraid to speak up!
6) What are the current guidelines regarding psychosocial care for cancer patients?
The current guidelines/standards of care state that cancer patients should be assessed to determine their psychosocial needs and level of distress followed by referral to appropriate resources. Psychosocial care should be an integral part of cancer treatment.
National Comprehensive Cancer Network (NCCN) Guidelines for Psychosocial Care of Cancer Patients (www.nccn.org)
The first clinical practice guidelines in the US were developed by NCCN in 1997. To avoid the stigma associated with psychological terms, the word ‘distress' was chosen because if you have cancer, it is normal to be distressed. The level of distress may vary from a normal level to a pathological one, which would be recognized as anxiety or depression. The panel then recommended that a rapid one question screen query regarding distress should be asked of all new patients and could be asked verbally or by using pen and paper. The distress scale was put into a design to look like a thermometer . This brief first phase screen would be followed by a second-phase evaluation for those scoring a level of 4 or greater to determine the nature of the problem and to make the appropriate referral . Guidelines for management of common psychiatric, social, and spiritual problems are based on the evidence when it is available from the literature or from a consensus of experts when evidence does not exist. They are updated annually to add new interventions as an evidence base is established .
Institute of Medicine Report (IOM): Cancer Care for the Whole Patient; Meeting Psychosocial Health Needs.
The Institute of Medicine (IOM) of the National Academies of Science, a respected nonprofit national health policy body, was given one million dollars to identify the psychosocial needs of patients, services available, and the evidence base in the literature for interventions. The committee determined that there was strong evidence in the literature to support interventions which (1) improved communication between patient and the oncology team; (2) utilized psychotherapy and counseling; (3) used psychopharmacologic medications; (4) helped patients manage their illness; (5) addressed unhealthy behaviors (e.g. smoking and diet) and (6) provided support for the family caregiver. The IOM concluded its study with a landmark report, published in 2007: ‘Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs' . The major recommendation coming from the study was that ‘quality cancer care today must integrate the psychosocial domain into routine cancer treatment'.
In addition, the standard should be implemented by use of a rapid screen for distress in all new patients in their first or second visit. This should be included in the medical treatment plan with appropriate referral to meet the psychosocial needs.
International Psycho-oncology Society (IPOS): International Standard of Quality Cancer Care (www. ipos-society.org)
In 2010 IPOS proposed an International Standard of Quality Care which supports the integration of psychosocial care and at the same time proposes a way that distress can be included in routine care by placing it as the 6th Vital Sign, following the example of pain management as the 5th Vital Sign. The IPOS International Standard of Quality Cancer Care has been endorsed by the Union International for Cancer Control, the International Society of Pediatric Oncology, LIVEStrong, and 11 other cancer organizations worldwide.
By Elizabeth B. Harvey, PhD, MPH
CEO, International Consulting Oncology, LLC
Interventionalist, MSKCC, Department of Psychiatry and Behavioral Health
New York, New York