Psychosocial distress in cancer patients has been identified as a significant and ongoing problem. The National Comprehensive Cancer Network (NCCN) Distress Management Panel has defined distress as
…a multi-determined unpleasant emotional experience of a psychological (cognitive, behavioral, emotional), social, and/or spiritual nature that may interfere with the ability to cope effectively with cancer, its physical symptoms and its treatment. Distress extends along a continuum, ranging from common normal feelings of vulnerability, sadness and fears to problems that can become disabling, such as depression, anxiety, panic, social isolation, ad spiritual crisis. (National Comprehensive Cancer Network, 2002)
Previous studies have documented that approximately one-third of all oncology patients will experience significant levels of distress associated with diagnosis and treatment of cancer, which warrants psychosocial treatment (Derogatis et al., 1983; Stefanek et al., 1987; Zabora et al., 1997; Sellick and Crooks, 1999; Zabora et al., 2001a; Carlson and Bultz, 2003b). Also well documented, using rigorous methodology, is the ability of various psychosocial treatments to alleviate distress levels and improve quality of life in cancer patients, reviewed in several papers and meta-analyses (e.g. (Cunningham, 1995; Meyer and Mark, 1995; Bottomley, 1997; Fobair, 1997; Iacovino and Reesor, 1997; Fawzy et al., 1998; Fawzy, 1999; Blake-Mortimer et al., 1999; Cunningham, 2000; Schneiderman et al., 2001; Carlson and Bultz, 2003a).
Interventions usually assume one of four common forms: psychoeducation, cognitive-behavioural training (group or individual), group supportive therapy, and individual supportive therapy. As well, they are usually targeted to one of three points on the illness trajectory: diagnosis/pretreatment, immediately post-treatment or during extended treatment (such as radiotherapy or chemotherapy), and disseminated disease or death (Schneiderman et al., 2001). Certain modalities of treatment have been shown to be more efficacious at one or more of these time periods. For example, psychoeducation may be most effective during the diagnosis/pretreatment time period, when patient information needs are high. However, for later stage adjustment with more advanced disease, group support may be more effective (Blake-Mortimer et al., 1999), while cognitive-behaviour techniques such as relaxation, stress management and cognitive coping may be most useful during extended treatments (Fawzy, 1995; Bottomley, 1997).
Several agencies, both American and International, have developed guidelines for psychosocial care, which include screening guidelines (see Carlson and Bultz (2003b) for an overview of distress screening issues). The Canadian Association of Psychosocial Oncology has published a book of Standards which details principles of practice, professional issues, and organization and structure of psychosocial oncology programmes (Canadian Association of Psychosocial Oncology, 1999). Principle 7 states that ‘psychosocial service needs of patients and families are assessed systematically using appropriate tools’ (p. 5). The National Comprehensive Cancer Network (NCCN) and the American Society of Clinical Oncology (ASCO) also have guidelines regarding the identification and management of distress (available at: http://www.nccn.org/physician_gls/index.html). The NCCN guidelines were developed by a Distress Management Panel that included many researchers and clinicians directly involved in major American screening programmes. The standards of care developed by this group state that: ‘All patients should be screened for distress at their initial visit, at appropriate intervals, and as clinically indicated.’ (DIS-3) (National Comprehensive Cancer Network, 2002). They go on to delineate clinical practice guidelines for the treatment of distress.
Where there has often been a disconnect, however, is in the ability of psychosocial oncologists to use information about distress levels obtained through routine screening of patients, and to direct those patients identified as in need of services to the appropriate sources of care. This idea of screening followed by appropriate triage is not new in psychosocial oncology, but rarely happens in routine clinical practice. Researchers at Johns Hopkins University have developed a comprehensive psychosocial oncology screening programme that assesses all patients at the point of entry into the cancer care system. Based on this assessment of emotional distress and practical problems, the patients who need support are contacted personally within 48h, and those who do not indicate significant current need are provided with information regarding the options for social and psychological care for future consultation (Zabora et al., 2001b).
Unfortunately, even routine psychosocial screening of patients is not the norm in terms of care of cancer patients. More commonly, patents are either self-referred, or referred by a member of the medical treatment team who becomes alerted to the patient's distress in the course of clinical care. This can potentially result in missing a large proportion of patients who may be in need of care, but who are either too distressed or without the instrumental resources to find their way through the often confusing medical system to reach psychosocial care. In addition, patients themselves may be so preoccupied with the physical components of their cancer that they may be unaware of the seriousness of the level of their own psychosocial distress, and potentially unaware that help is available to treat these symptoms. It may be the case, then, as a result of this unsystematic referral system, that the most disadvantaged patients may be the least likely to get necessary care.
In order to investigate this possibility, and also to comprehensively assess the most common psychosocial problems reported by a population of patients, we sought to assess every patient who visited a large urban tertiary cancer centre over a 4-week period of time in January of 2003. Patients with any diagnosis and all treatment stages were included in the screening programme, in order to capture a cross-sectional snapshot of patients that could be generalised to the cancer centre population at large. A substantial sample would also allow comparisons between men and women, patients from different ethnic backgrounds, with different types of cancer, and at varying stages of treatment.