Opportunities for Improving Psychosocial Care              for Cancer Survivors

1. William F. Pirl⇑

1. Center for Psychiatric Oncology and Behavioral Sciences, Massachusetts General Hospital Cancer Center, Boston, MA

1. Corresponding author: William F. Pirl, Department of Psychiatry, Massachusetts General Hospital, 55 Fruit St, Yawkey 9A, Boston, MA 02114; e-mail: wpirl@partners.org.

1. Paul B. Jacobsen

1. Moffitt Cancer Center, Tampa, FL

1. Teresa L. Deshields

+ Author Affiliations

1. Siteman Counseling Service, Siteman Cancer Center, St Louis, MO
    © 2013 by American Society of Clinical Oncology

The quality of psychosocial care provided to patients with cancer has received increased attention since the 2008 publication of the Institute of Medicine (IOM) report entitled “Cancer Care for the Whole Patient: Addressing Psychosocial Health Needs.”¹ The report concluded that, despite evidence for the effectiveness of psychosocial care, many patients who could benefit from these services do not receive them. Among the report's main recommendations was that processes should be in place to identify patients' psychosocial needs and then link patients with appropriate services to address those needs. Since the report's publication, there have been numerous efforts to evaluate the extent to which psychosocial care is being provided consistent with the IOM recommendations. These efforts include surveys of oncologists,² oncology nurses,³ and psychosocial care providers⁴ as well as reviews of medical records of patients seen in selected medical practices.⁵ Although useful, these reports provide an incomplete picture because they are based on convenience rather than on population-based samples and because they do not include the patient's perspective.

These limitations are addressed by Forsythe et al⁶ in the article that accompanies this editorial. Using data from the 2010 National Health Interview Survey, an in-person nationwide survey, the authors report on information collected from 1,777 survivors of adult-onset cancer. The study yielded two major findings. First, only 40.2% of survivors reported having had a discussion with their providers about how cancer may have affected their emotions or relationships. Second, more than 90% of the barriers to the use of professional counseling or support groups identified by survivors involved lack of knowledge about, or perceived unavailability of, services. 

Taken together, these findings provide the most compelling evidence, to date, that heightened psychological distress in many patients with cancer is still unrecognized and untreated. The facilitative role of psychosocial discussions by providers is supported by additional findings from the study showing that patients who reported such a discussion were almost three times more likely to also report participation in professional counseling or a support group. The findings are tempered by the cross-sectional nature of this study which limits the extent to which a causal inference can be drawn about the relationship between provider discussions and receipt of psychosocial care. Another important study limitation is the use of a retrospective recall method to assess provider discussions and receipt of care, especially given that more than 6 years had elapsed from the time of diagnosis for the majority of participants.

Despite these limitations, the findings in this study identify several areas for improvement that are quite timely considering changes that are occurring nationally in accreditation standards. For example, in 2015, the American College of Surgeons (ACoS) Commission on Cancer will include as part of its accreditation procedures evaluation of local cancer committees' implementation and monitoring of processes for psychosocial distress screening and provision of psychosocial care.⁷ Although screening has the potential to improve the recognition of distress in cancer survivors, it cannot replace discussions of psychosocial needs and resources. Ideally, screening would prompt these discussions between providers and patients. 

The 2008 IOM report identified discussion of psychosocial needs and education about psychosocial support resources as an essential part of cancer care for the whole patient. The importance of attending to the emotional states of patients with cancer is underscored by research showing that it is associated with better general well-being, quality of life, response to chemotherapy, and adherence to treatment.^1,8 In the study by Forsythe et al,⁶ patients reporting psychosocial discussion with their physicians were also significantly more likely to be satisfied with their care.

Although almost 60% of cancer survivors in the study by Forsythe et al⁶ reported not having such a discussion with their providers, oncologists nevertheless undoubtedly feel invested in the psychosocial care of their patients. In a study of oncologists and primary care physicians providing follow-up care to cancer survivors, more than 78% reported “broad involvement” (meaning either sole or shared responsibility) in the psychosocial care of their patients.⁹ In fact, both groups identified their own specialty as the primary providers of psychosocial care for cancer survivors.⁹

Some oncologists might fear that discussions of psychosocial care will necessitate an overwhelming number of referrals; however, numerous studies have documented that the majority of cancer survivors are not distressed.^10–12 In the current study, 73% of patients reported not needing psychosocial services, and this finding is consistent with previous research that indicated that only 26% of female and 11% of male cancer survivors wish to receive psychological support.¹³ In addition, in the present study, most patients (74.9%) reported being satisfied with how their psychosocial needs were met, despite only a minority reporting a discussion about psychosocial aspects of cancer with their provider. Uptake of psychosocial services is not wholly representative of the value of being informed about these services, however, given that a discussion about services can signal that conversations about psychosocial well-being are an appropriate part of cancer care. 

Some oncologists might also avoid discussions about psychosocial care because of a lack of access to services, and there is some evidence to support this. One survey found that oncologists who had access to psychosocial services were more likely to report routinely assessing distress.¹⁴ Whereas large comprehensive cancer centers may have their own internal psychosocial services, many community treatment centers do not have these resources.⁴ In the next few years, the oncology community will need to address the accessibility of psychosocial care in the United States. There is much to be learned from our colleagues in primary care who have devoted considerable effort to designing and testing innovative models of care that increase access to mental health services. An excellent example is the collaborative care model, in which primary care providers deliver mental health services with backup provided by mental health experts. This model has been adapted and evaluated in patients with cancer, demonstrating improvement in depression outcomes in two randomized controlled trials.^15,16 Cancer centers may need to identify local mental health clinicians and build working relationships and referral networks to address the problem of access. Telephone-based interventions represent another potential way to increase access when the availability of local mental health clinicians is limited. Kroenke et al¹⁷ conducted a trial of a telephone version of collaborative care with mental health clinicians miles away and found that it, too, decreased depression. Although telephone-based interventions have yet to enter widespread clinical practice, promising work in psychiatric oncology teleconsultations is being done with experts at the Massachusetts General Hospital Cancer Center (Boston, MA) collaborating with providers at the Lee Memorial Health System (Fort Myers, FL). 

The efforts of the last decade have established the importance of ensuring access to psychosocial services for cancer survivors. Moving forward, we need to determine the most effective practices and how best to deliver them across diverse settings. Distress, like cancer, is not a single entity, and one treatment does not fit all. Psychosocial oncology needs to increase its research in comparative effectiveness, health services, and outcomes. The ultimate impact of screening programs, provider discussions, and increased access to psychosocial care hinges on the treatment. The next few years will include countless natural experiments as screening programs are implemented. If we are proactive, we can use these data to create successful systems in which all cancer survivors will have some discussion with their providers about psychosocial care, whether or not they choose to use psychosocial services.