Despite the well-known physical and emotional impact cancer has on patients’ lives, the psychological and social aspects of cancer care have lagged far behind that of biological treatment. The long-held stigma related to cancer, combined with the stigma associated with mental illness, likely accounts for this discrepancy. However, the pendulum has been tipping in the positive direction since 1997, when NCCN established the first panel to examine the problem, and developed standards of care and the first clinical practice guidelines.1 The appointed NCCN Distress Management Panel addressed the stigma directly, suggesting that the words psychiatric and psychological were stigmatized, and that clinicians should find a more “normal” word when inquiring about psychological issues in routine care.
The word distress emerged as a word broad enough to encompass the emotions related to the psychological, physical, social, and spiritual aspects of coping with cancer. The panel suggested that all new patients be screened for distress, similar to screening for pain. A similar scale ranging from 0 to 10 was proposed, called the Distress Thermometer, with an accompanying Problem List to target the reason for the distress. This form provided an easy way to question patients in the waiting room, with follow-up by doctors or nurses of those who scored above a certain level of distress. Similar brief screening tools are also used.2
In the 1990s, many patients with cancer were complaining about poor psychosocial support in the context of their cancer care. The Institute of Medicine (IOM) studied the problem and, in 2008, declared that a new quality standard for cancer care should be established: one that included the psychosocial domain. This was based on peer-reviewed studies supporting the efficacy of psychosocial interventions.3
This new standard has been endorsed by the International Psycho-Oncology Society, the International Union Against Cancer, and 57 global cancer organizations. The global endorsement supports the integration of the psychosocial into routine cancer care and recognition of distress as the sixth vital sign after pain.4
The ASCO Quality Oncology Improvement Initiative provided helpful support for the IOM standard by incorporating several questions into their self-audits of oncology practices that rate the quality of psychosocial care provided.5
Further support came in 2012, when the American College of Surgeons Commission on Cancer (ACoS) endorsed the IOM report. ACoS outlined a stepwise procedure for ensuring that the 1500 centers they oversee establish programs to fully integrate the psychosocial domain by 2015.6 In the interim, clinics and centers are to form a multidisciplinary committee to develop procedures that begin the implementation of the new standard.
Recommendations for Implementation of the ACoS Accreditation Standards
The American Psychosocial Oncology Society (APOS), the Association of Oncology Social Workers, and the Oncology Nursing Society are developing a joint position paper containing recommendations to assist centers and clinics in developing the required distress screening program (Pirl WF, unpublished data, 2013). ACoS delineated 6 components for which a policy and procedure must be developed. The components are as follows: 1) establish a committee to oversee the program; 2) determine timing of the initial and follow-up screening; 3) choose a method of screening; 4) choose a screening tool; 5) assure evaluation and referral to a mental health professional as appropriate; and 6) document the screening in the medical record.
The APOS Helpline relates directly to component 5, which states that referral to a mental health professional should be assured for patients with significant distress. This helpline is an invaluable resource for the committees as they plan their referral procedures. Use of this helpline will provide an oncology clinic or center staff access to mental health clinicians trained and experienced in counseling patients with cancer.
Addressing Component 5: Referral to a Mental Health Professional Via a National Toll-Free Helpline
APOS is the only national multidisciplinary organization devoted to the psychosocial aspects of supportive cancer care. Composed of psychologists, social workers, nurses, counselors, and psychiatrists, it has maintained a helpline (1-866-276-7443) since 2003 to help patients find a counselor in their local community through a directory maintained by the society. This can serve as a useful bridge between oncology and mental health professionals to provide more seamless care to patients. It currently receives calls from approximately 600 patients and their families annually (Figure 1).
Unfortunately, most oncology clinics and offices are not aware of this readily available resource for expediting referral of distressed patients. The helpline staff also temporarily assists and supports patients in rural areas where no mental health resources with expertise in oncology are available.
The comprehensive distress screening that will be required for accreditation by 2015 must include procedures to treat those who are identified as distressed as a part of the psychosocial program. The APOS Helpline can be helpful to the newly formed committees as they approach how to organize the component related to referral. The helpline staff can also offer suggestions and help organize a referral list in some areas that have a lack of trained mental health professionals.
All new APOS members who are willing to assist patients in their area are included in the Directory of now more than 1500 professionals. Advocacy organizations use the helpline, often referring more psychologically complex patients. The APOS Helpline has ties with the American Cancer Society, the Patient Advocate Foundation, LIVESTRONG, CancerCare, and Cancer Support Community that enable referrals among the organizations. The helpline keeps a directory of all advocacy organizations and their free support services to provide to callers.
Number of calls in 2003-2012.a
aThe lack of growth of calls from 2009-2012 reflects the fact that insufficient funds were available to expand the program.
Citation: Journal of the National Comprehensive Cancer Network J Natl Compr Canc Netw 11, 11; 10.6004/jnccn.2013.0159
As shown in Table 1, the helpline calls come from patients (55%), families (34%) and health care or advocacy organizations (11%). Most calls are from women (86%), and most patients with cancer (76%) are women. A local referral was given only 44% of the time. When no local referral was available, 8% of those patients received support from the helpline, and the remainder were given referrals to the LIVESTRONG free phone counseling helpline or other cancer service organizations. For only 2% of the cases was no help available.
Resources are needed to expand the helpline and perform quality controls. Staff was insufficient to follow up on callers to determine outcome. Only informal feedback occurs between the various advocacy organizations to which referrals are made. No formal linkage has been made to local oncology providers, except for advertising in journals and through advocacy groups.
Calls come primarily from both coasts, but many also come from underserved rural areas in the country that have few to no mental health professionals with cancer care experience. Finding a professional with the appropriate expertise can be difficult even in some urban areas, because relatively few psychooncology training programs are available for mental health professionals.
Increasingly, calls come from patients who have no insurance or who live on limited income from disability insurance, and have no means to pay for mental health counseling. The APOS Helpline refers these patients to organizations that help with financial issues, such as the Patient Advocate Foundation.
Conclusions
The first step to implementing the new quality standard requires identification of distressed patients with cancer. Many practices are not prepared to readily accomplish the second step, which is to identify mental health services for their patients in need. This situation will become more critical when oncology centers and clinics are required to have a psychosocial program in place to receive accreditation by the ACoS by 2015.
Helpline Statistics for 2012 (N=615)
In the interim, the APOS Helpline can serve as an invaluable resource for the hospital and clinic committees as they plan their comprehensive distress screening procedures. The helpline can simplify the referral process by having the patient call the helpline directly. Nursing staff and social workers can use this service to help direct patients to mental health resources.
Despite the numerous free counseling services sponsored by advocacy organizations around the country, these programs (eg, support groups, individual counseling) are limited by resources. In some cases, they may not be adequate to provide the counseling expertise needed when patients with cancer have more complicated distress issues. This APOS toll-free Helpline is the only service in the country that provides referrals to such expertise.
In the future, the Helpline could be expanded to provide needed free support services to patients who are underserved in the health care system and to those in underserved geographic areas. For example, particular need exists for phone support for many elderly patients who are isolated and demoralized, and on lengthy treatment protocols for breast, prostate, and colon cancers. A controlled study by CALGB showed that even a monthly telephone call to monitor distress symptoms resulted in a significant reduction in feelings of not only anxiety and depression, but also isolation.7 The APOS Helpline network could become a resource for delivering the specialized psychological interventions that have proven effect.
References
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American College of Surgeons. Cancer Program Standards (CPS) 2011 Project. Available at: http://www.facs.org/cancer/coc/cps2011.html. Accessed July 10, 2012.
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Kornblith AB, Dornell JM, Herndon JE et al.. Telephone monitoring of distress in patients aged 65 or older with advanced cancer: a CALGB study. Cancer 2006;107:2706–2714.
