Psychosocial Oncology has been evolving as a subspecialty of cancer care over the past 30 years. While there has been considerable growth in Psychosocial Oncology, a uniform model of program integration has been lacking, resulting in:
Challenges regarding the value of psychosocial aspects of cancer.
Lack of large-scale, well-designed trials establishing evidence of the effect of psychosocial support.
Concern about cost of supportive care to the health-care system.
Challenges to the discipline itself.
There is no doubt that a cancer diagnosis has the potential to be significantly distressing for the patient, family or community. A major issue for Psychosocial Oncology is how we rapidly and in a standardized way identify and appropriately care for patients and families in need of specialized psychosocial and rehabilitation services. The research on prevalence of distress 1–3 has demonstrated that cancer can pose challenges to patients and their families through the entire trajectory of diagnosis, treatment, survivorship and end of life care.
A cursory review of publications between 1997 and January 2011 in the Journal of Psycho-Oncology archives indicates 204 ‘hits’ on the keywords ‘screening’ and ‘distress’. These would also include special issues with conference abstracts, reviews and case notes. Noteworthy is the upsurge since 2006 (Figure 1).
While we do acknowledge the pioneering work of Weisman and Worden's Omega Screening Project 4, we also note that over the past 20 years, the literature on screening has been somewhat static. Gaps still exist and more research around understudied groups 5–7, knowledge translation 8, 9, as well as the need for refinement of tools and measures 10–13 remains essential. However, it is also timely that as a discipline we target clinical care for those distressed patients by routinely implementing standardized Screening for Distress 14–16 throughout the whole cancer care system.
From the 204 studies that we identified, less than 10% discussed issues related to implementation. Countries where progress is being made include Australia 17, the UK 18, the US 19 and Canada 20; these are examples where recommendations that screening for distress be incorporated as a standard. Where there are no unified government structures around health service delivery, challenges around standardizing care practices are likely to become significant. Here is where our science, collaborative efforts and national and international endorsements and support from working groups can come together to help encourage a change in clinical practice.
While this Special Edition of Psycho-Oncology is focused on Distress as defined by NCCN 21, we note that screening for clinical depression in the patient and the patient's spouse is also relevant as the risk for severe psychological outcomes is significantly increased in patients and partners even years after the diagnosis 22, 23.
Despite the NCCN guidelines, Jacobsen 24 reports that only 20% of NCCN member institutions screen patients for distress as recommended by the guidelines, while 37.5% of those institutions conducting routine screening rely on interviews only. Pirl et al. 25 surveyed 1000 cancer care physicians in the United States and found that less than 15% report using standardized methods to screen for distress. Similar findings are reported in Canada 9. Given the prevalence rates of distress in cancer patients' worldwide, the International Psycho-Oncology Society (IPOS) endorsed distress as the 6th Vital Sign in June 2009.
In cancer care, clinicians who do not routinely screen for distress might fail to identify patients in need of psychosocial support 26, 27. Even with the IOM report on Whole Patient Care 28, psychosocial care for patients and Psychosocial Oncology as a discipline will have difficulty serving patients unless screening for distress is integrated as a standard of practice. Despite the importance of Screening for Distress, we acknowledge that screening for lifestyle and social circumstances (e.g. marital status, economic resources, employment and cultural background) have similar value in whole patient care. However, such factors are not the focus in this Special Edition.
It is noteworthy that Screening for Distress is gathering global momentum. In August 2010, delegates at the UICC meeting in China (http://www.uicc.org/advocacy/distress-6th-vital-sign-cancer-care) voted to endorse the International Psycho-oncology Standard of Care document (www.ipos-society.org), which recognizes distress as the 6th Vital Sign. A joint statement from UICC President Eduardo Cazap and IPOS President Maggie Watson expressed that ‘We expect that recognizing distress as the 6th vital sign will improve the treatment of cancer patients, improve outcomes for cancer patients, and improve the effectiveness of cancer care systems around the world.’
For the Journal of Psycho-Oncology the announcement of a Special Edition on Screening for Distress generated a significant amount of interest. More than 40 papers were submitted—the most for any Special Edition. More than 100 reviewers were engaged in the peer review process. Interest in this area is keen and positive, affirming an emerging role for the integration of screening for distress as the 6th Vital Sign in Cancer Care 29, 30.
In this Special Edition we have attempted to cover the relevance of Screening for Distress so screening can help guide patient care in clinical settings. With so many papers of excellent quality, our task as editors was indeed challenging. We have selected a range of papers that contextualized lessons learned from primary care (Mitchell), to Kendall's use of screening in community-based cancer programs, to Bevan's paper on distress screening in Allogeneic Hematopoietic Stem Cell caregivers and patients, and Lammens et al. paper on distress in partners of individuals diagnosed with or at high risk of developing tumors due to rare hereditary cancer syndromes. Further, we selected papers on screening in initial phases of diagnosis (Dolbeault). Unfortunately this special edition is limited to only a select few of the many excellent papers submitted. The challenge of who to screen, when to screen, how to screen and what tools with which to screen remains central to our continuing science and practice.
At this point what we do know is that a successful sustainable roll out of Screening for Distress is extremely challenging and varies based on the uniqueness of local jurisdictions. How screening is implemented in the face of social, organizational and economic challenges 31–33 will be the next hurdle to overcome if psychosocial oncology is to find its place as a core program within the cancer care system worldwide.
In conclusion, our current ability to identify all patients feeling distress is not possible. Limitations in our screening tools and constrained financial resources may lead to one-time clinic screening procedures rather than routine screening. Likewise, we cannot be sure that we will identify clinically relevant and measurable effects of the screening activity if we do not have access to a system of referral and treatment for patients screened positive for distress 34. This all demonstrates the growing need for more trials investigating the effects of screening and treatments for distress. With the endorsement of distress as the 6th Vital Sign we are at a new threshold of comprehensive cancer care. The current challenge for Psycho-Oncology is how to use our science to improve patient care.