Psychosocial oncology services in West Virginia.
|Abstract:||While the field of psychosocial oncology has been recognized for several decades, specialized psychosocial services to West Virginians with cancer have been limited. Considering the increase in the incidence of cancer and the recognized burden of cancer-related emotional distress, healthcare providers must screen for emotional distress as the sixth vital sign, and develop an array of evidence based interventions and services for patients with cancer and their families along the cancer trajectory|
Cancer patients (Care and treatment)
Stress management (Methods)
Stress management (Usage)
Cancer (Care and treatment)
Cancer (Psychological aspects)
Suppa, Carolyn H.
Linton, John C.
|Publication:||Name: West Virginia Medical Journal Publisher: West Virginia State Medical Association Audience: Academic Format: Magazine/Journal Subject: Health Copyright: COPYRIGHT 2009 West Virginia State Medical Association ISSN: 0043-3284|
|Issue:||Date: Oct, 2009 Source Volume: 105 Source Issue: S1|
|Product:||Product Code: 8000432 Cancer Therapy NAICS Code: 621 Ambulatory Health Care Services|
|Geographic:||Geographic Scope: West Virginia Geographic Code: 1U5WV West Virginia|
When cancer used to mean certain death, physicians often withheld
diagnostic information to protect patients and their families from the
fear, shame and guilt that often accompanied this disease. A study by
Oken in 1961 (1) found that 90% of physicians in the US usually did not
disclose the diagnosis of cancer to the patient. Although other surveys
through the years have reported a substantial turnaround of opinion, the
practice of "protecting" cancer patients--and thus reducing
their opportunities to obtain psychosocial support--still exists today
The field of psycho-oncology emerged in the mid-1970s in part as the response to an increased concern for patients' rights to be informed of their diagnoses, prognoses and treatment options, and also due to improvements in the prognosis of cancer with the addition of chemotherapy to surgery and radiation treatments, and the resulting decrease in pessimism regarding cancer outcomes. Memorial Sloan-Kettering Cancer Center and Massachusetts General Hospital are credited as the pioneering centers of psycho-oncology.
Psycho-oncology is a subspecialty of oncology that has developed a considerable base of literature, training programs and an extensive research agenda, including "behavioral research in changing lifestyle and habits to reduce cancer risk; study of psychological issues related to genetic risk and testing; symptom control (anxiety, depression, delirium, pain and fatigue) during active treatment; management of psychological sequelae in cancer survivors; and management of the psychological aspects of palliative and end-of-life care." (3)
The term psychosocial oncology is most frequently used to encompass not only the emotional and behavioral aspects of patient distress, but also the social, functional and spiritual. In some cancer settings, mental health efforts are combined into psychosocial oncology programs. But the inadequate paradigm shift toward providing psychosocial support and removing attitudinal barriers regarding psychological care of the medically ill has hampered the endeavors of psychosocial oncologists (4). Although some cancer settings employ integrated approaches to treatment--including not only psychology but also psychiatry, social work, nursing and pastoral counseling--many continue to have a disconnect between the medical and psychosocial perspectives. (5) Often this is due to inadequate education of oncologists and staff, difficulty with reimbursement for services, and the perceived stigmas of cancer and psychological problems.
While most medical professionals will not deny that cancer patients and their families often shoulder a heavy psychological burden, multidisciplinary interventions that include psychological care are not fully utilized. (6) Among other specialists, health psychologists can intervene with widely accepted and efficacious evidence-based techniques for coping with psychological sequelae, as well as for changing lifestyles associated with cancer incidence and risk. Research shows that early diagnosis and referral of those with psychosocial concerns result in greater patient satisfaction, fewer psychiatric disruptions to oncologic treatment, improved communication, increased trust and respect, better adherence to treatment, and less stress to the oncologic team and other health services. (7)
In their defining 2007 report regarding cancer care, the Institute of Medicine (IOM) summarized that "today it is not possible to deliver good quality cancer care without using existing approaches, tools, and resources to address patients' psychosocial health needs." (9)
The National Comprehensive Cancer Network (NCCN)--which has developed clinical practice guidelines for treatment of many aspects of oncology--has used the same multidisciplinary panel approach applied to their other guidelines to provide NCCN Distress Management Guidelines (available at www.nccn.org). These guidelines are for "the care of the psyche" and to "articulate common serious and treatable psychiatric syndromes, offer a differential diagnosis for distress and consider the psychological, social and spiritual component of symptoms like fatigue and pain." (10) The panel employed the term distress to decrease the stigma of mental health issues and to reflect a degree of expected emotional symptoms.
At the heart of the Distress Guidelines are screening tools for measuring distress including a Distress Thermometer (DIS-A) - similar to a 0/10 pain scale--and a problem list. These are recommended as a part of the initial evaluation and triage process. According to the NCCN algorithm, patient-reported scores of > 5 represent a significant level of distress to be evaluated by those designated as the mental health arm of the oncology team. Scores of 4 or lower are considered mild and normal fears, worries and uncertainties that are manageable by nurses, oncology physicians and other designated members of the primary oncology team.
The following table illustrates some reasons for referring to mental health professionals according to the NCCN Distress Management Guidelines.
One study of outpatient clinics using the Distress Thermometer found that approximately one-third of patients with cancer were found to be experiencing significant levels of distress. This figure was greater in patients with tumors having a poorer prognosis. Other research has shown that throughout the trajectory of the illness the incidence of distress in North America ranges from 35% to 45%, while end-of-life distress affects 58%. Results also support that a significant proportion of that perceived distress goes unrecognized by the patient's health care team (11).
To increase distress recognition and thereby reduce not only the emotional but also economic burden of cancer care, the Canadian Council of Health Services Accreditation (Accreditation Canada) added requirements to assess emotional distress as the sixth vital sign of cancer to its 2009 accreditation standards. (12) An argument could be made that a similar requirement in the US for assessment of distress is crucial. (13)
Even though a preponderance of clinical research demonstrates that patients with cancer benefit from psychosocial care, and recommendations exist for attending to those needs by use of the NCCN guidelines, a 2005 study of NCCN member institutions surveyed showed that only 20% screened all patients with cancer according to these guidelines. Most institutions agreed that screening for patients' mental health concerns was worthwhile, and 60% of the institutions surveyed reported that they either screened some of the patients or were testing a pilot program for screening. (14) In a 2007 study of oncologists who were members of the American Society of Clinical Oncology, less than one-third reported being at least familiar with the NCCN distress guidelines. Sixty five percent reported doing some type of routine screening, but only 14.3% of those used a screening instrument to assess distress. (15)
Psycho-oncology In West Virginia
To appreciate the types of psychosocial services offered by cancer treatment facilities in West Virginia, an informal survey was conducted by telephone interviews and web site references. While not all available resources may have been assessed, the following were reported:
* Only the inpatient setting of one hospital is reported to be using distress management guidelines as a matter of protocol.
* All of the hospitals providing cancer care report some level of social work services available to their patients with cancer, either via referral to a general social work service (often now housed in a case management department) or by a designated oncology social worker (who may have other services to cover as well).
* All hospitals provide some type of spiritual support, with most hospitals having pastoral care services provided either by employed or volunteer chaplains.
* Most hospitals provide support group leadership or referral.
* One hospital employs a fulltime doctoral level psychologist available to cancer patients and their families via a Cancer Patient Support Program.
* One hospital provides referrals to a consulting psychiatrist via a Psycho-oncology Program.
* One hospital provides oncology counseling by appointment with a doctoral level counselor.
* One hospital has a full-time cancer patient navigator who is a social worker.
* One hospital reportedly is developing consulting psychological services with a local university psychology program.
Consider these limited services reportedly available in relation to the following burden of cancer in WV.(16)
* Approximately 29 West Virginians per day are diagnosed with cancer (over 10,500 per year).
* In 2006, a total of 4,616 West Virginians died of cancer, about 12 per day.
* Cancer is the second leading cause of death in WV, exceeded only by heart disease.
* One of every four deaths (22%) in WV is due to cancer.
* Cancer was the #1 cause of death among 45-74 year old West Virginians in 2008.
* Cancer is the #1 cause of years of potential life lost in WV.
* Age-adjusted cancer rates for West Virginia men and women exceed those of the US.
Given the number of visits per year in the larger cancer centers in WV (approximately 16,000 to over 25,000) and the reported levels of distress related issues needing to be addressed (from 33% to 58%), our observations and understanding of at least minimal psychosocial care suggest that patients with cancer and their families are clearly underserved when hospitals staff all mental health services through one or two positions and/or a few referral sources or support groups.
Clinical research suggests that distress management leads to positive cost benefit ratios both emotionally and financially, not only for patients and their families, but also for the institutions and clinicians providing oncology care. Cancer treatment programs in West Virginia should strive to comply with the Institute of Medicine's new recommendations for integrating evidence based psychosocial services as the standard of care for cancer patients, with all cancer care providers ensuring that each patient receives psychosocial health care meeting these IOM standards, and also focus on the development and validation of psychosocial programs implementing NCCN Distress Management Guidelines.
To understand the background and best practices of the field of psychosocial oncology.
(1.) Oken D. What to tell cancer patients: a study of medical attitudes. JAMA. 1961; 175: 1120-8.
(2.) Angelos P, editor. Ethical issues in cancer care, 2nd ed. New York: Springer;
(3.) Holland JC. History of psycho-social oncology: overcoming attitudinal and conceptual barriers. Psychosom Med. 2001; 64: 206-221.
(4.) Pincus HA, Sapama RP. Barriers to the delivery of psychosocial care for cancer patients: bridging mind and body. J of Clin Oncol. 2008; 19: 77-80.
(5.) Schofield P, Carey M, Bonevski B, SansonFisher R. Barriers to the provision of evidence-based psychosocial care in oncology. Psycho-oncology 2006; Oct;15(10):863-872.
(6.) Fallowfield L, Ratcliffe D, Jenkins V, Saul J. Psychiatric morbidity and its recognition by doctors in patients with cancer. Br J Cancer. 2001; 84:1011- 1015.
(7.) Holland, JC, Greenberg, DB, Hughes MK, editors. Quick reference for oncology clinicians: the psychiatric and psychological dimensions of cancer symptom management. Charlottesville, Virginia: American Psychosocial Oncology Society, 2008.
(8.) Eastman P. New IOM report recommends psychosocial services as standard of care. Oncol Times, December 10, 2007: 12-13.
(9.) Adler N, Page AEK, editors. Cancer care for the whole patient: meeting psychosocial health needs. Washington, DC: The National Academics Press, 2008.
(10.) Holland JC, Andersen B, Breitbart WS, et al. The NCCN Distress Management Guidelines, version 1, 2007. Available at: http://www.oralcancerfoundation.org/ treatment/pdf/distress-2008.pdf. Accessed July 14, 2009.
(11.) Zabora J, BrintzenhofeSzoc K, Curbow B, Hooker C, et al. The prevalence of psychological distress by cancer site. Psycho-oncology 2001; 10, 19-28.
(12.) Accreditation Canada. Qmentum program 2009 standards: Cancer care and oncology services. 2008; Ver 2.
(13.) Holland JC, Bultz BD. The NCCN guideline for distress management: A case for making distress the sixth vital sign. J Natl Compr Canc Netw 2007;5:3-7.
(14.) Jacobsen PB, Ransom S. Implementation of NCCN distress management guidelines by member institutions. J Natl Compr Canc Netw 2007 Jan; 5 (1): 99-103.
(15.) Pirl WF, Muriel A, Hwang V, Hornblith A, et al. Screening for psychosocial distress: a national survey of oncologists. J Support Oncol, 2007; Nov-Dec; 5(10): 499-504
(16.) WV Cancer Registry. Cancer Incidence in West Virginia: 2008. Available at: http:// www.wvcancerregistry.org. Accessed July 14, 2009.
Carolyn H. Suppa, EdD
John C. Linton, PhD, ABPP
Cancer Patient Support Program, Charleston Area Medical Center, Charleston, WV 25304, USA and Department of Behavioral Medicine and Psychiatry, West Virginia University School of Medicine, Charleston, WV
Both are members of the West Virginia Psychological Association
Table 1 * Patients scoring > 5 on the NCCN DIS-A Distress Thermometer * Patients currently experiencing intense or overwhelming anxiety or any symptoms of: ** Major denial ** Psychosis ** Dissociation ** Delirium (disorientation, confusion, memory problems) * Patients with previous history or family history of: ** Depression ** Substance abuse ** Suicide attempt ** Psychiatric hospitalization ** Other psychiatric disorder(s) * Patients displaying hostile or inappropriate behavior towards family or staff * Patients who, during cancer treatment, require maintenance of: ** Psychotropic medication ** Steroids * Patients experiencing difficulty making treatment decisions or complying with treatment * Patients considering certain aggressive treatments such as HSCT * Patients considering end-of-active treatment decisions * Patients dealing with other concomitant life stressors * Patients who have special issues with regard to: ** Age ** Support ** Previous experience with cancer ** Fertility ** Spirituality/Values ** Irrational Beliefs ** Previous experience with death in family ** Pain
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