Patient Benefits From Psychosocial Care: Screening for Distress and Models of Care

  1. Galina Velikova

+ Author Affiliations

  1. Cancer Research UK Centre, University of Leeds, Leeds Institute for Molecular Medicine, St James's Institute of Oncology, Leeds, United Kingdom

Cancer diagnosis and treatment lead to disruption of patients' lives, family, and professional roles, and can cause emotional distress.1 A significant minority of patients suffer from depression and anxiety, requiring appropriate psychological and pharmacologic treatment. Oncologists often underdiagnose and undertreat depression, particularly in advanced cancer.2,3

Early studies examining the prevalence of psychiatric morbidity in patients with cancer used instruments developed in psychiatry and evaluated them against standardized diagnostic interviews.4–6 They reported prevalence of depression from 10% to 50% and demonstrated that screening instruments detected more psychiatric problems than oncology staff. However, it was increasingly recognized that only a significant minority of patients with cancer will be diagnosed with clinically significant depression or anxiety, whereas the majority of patients experience a moderate level of emotional distress, generally not meeting criteria for psychiatric diagnosis. However, even if this distress may not require psychiatric treatment, patients nevertheless may need appropriate psychological or social interventions. This realization led to conceptualization of distress in patients with cancer as a related, but separate entity, requiring recognition and tailored interventions.

The National Comprehensive Cancer Network defined distress as “a multifactorial, 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….”7 The National Comprehensive Cancer Network recommends a simple screening tool, the distress thermometer (DT), which allows screening of large numbers of patients without the need for complex scoring.8 A cutoff point helps to identify patients with significant distress; many validation studies have confirmed its usefulness in cancer care. It should be noted that the DT measures the broader concept of distress, without giving specific information on the probability of psychiatric morbidity, such as depression.9

Initial studies of depression screening effectiveness in mental health settings and general practice failed to confirm higher rates of diagnosis or benefit for patients, possibly due to lack of specific management guidelines.10 However, randomized studies in oncology using patient-reported outcome questionnaires that included measures of distress/depression, showed that when these data were provided to the oncologists or nurses, it contributed to doctor-patient communication with improvement in patients' emotional well-being.11–15 In the care model of these trials, the intervention was integrated into the mainstream oncology care: the screening information was provided to the oncology team, who then discussed any reported problems and decided together with the patient on appropriate management, including referrals to specialist services.

Evidence exists that psychological approaches and techniques can improve patient outcomes.16 However, availability of appropriate specialist psycho-oncology services is essential for the model of screening and offering specific support to patients to work. The services should be appropriately resourced, with clear and timely referral pathways for both oncology staff and for patients themselves.

In summary, we learned from research that models for psychosocial care in cancer should contain a number of key components including: routine screening for distress using simple, validated patient-reported measures and computerized support to handle the large volume of data collection; training oncology staff to recognize, explore, and deal with distress; and available specialist psycho-oncology services with referral pathways. However, despite our growing knowledge and national guidelines recommending active management of distress, implementation in routine practice remains a challenge.17–19

In this issue of Journal of Clinical Oncology, Carlson et al20 describe a pragmatic large randomized controlled trial (RCT) looking at a model of screening for distress in patients with cancer, using patient self-reported measures, then providing patients with their personalized report and an invitation to self refer to psycho-oncology services. The control group of patients (ie, minimal screening) completed only the DT at baseline and 3 months and had general information about psycho-oncology services. In the full screening group, patients completed both the DT and the Psychological Scan for Cancer questionnaire, measuring anxiety and depression. Patients were provided with a personalized feedback report, which was also placed on their electronic medical records. In the triage group, in addition to the full screening, patients were offered the opportunity to speak to a member of the psychosocial team. In this model of psychosocial care, screening was integrated into oncology clinics for all new patients, but the onus was on the patient to decide whether to seek further help or not, and oncology staff were not required to act on the screening information.

Carlson et al20 reported positive results in terms of alleviating generalized distress in the triage patients with lung cancer. Furthermore, patients who had referrals to the psycho-oncology team showed improvement in anxiety and depression. It is important to note that after screening of more than 1,000 patients new to cancer clinics, approximately 30% of them generated referrals to psycho-oncology services. Therefore, the fear of raising expectations and overwhelming services is not supported by this study.

The study illustrates the conceptual issues in differentiating between distress and depression/anxiety. Alleviation of general distress (measured by DT) was limited to patients with lung cancer, whereas significant benefits were seen for patients with high depression/anxiety scores who received referrals to service. These results support a model where serious cases of psychiatric morbidity should be promptly identified and referred, as they would clearly benefit from specialist psycho-oncology interventions and treatments.

This study has not explored (or not provided information) on the role of the oncology team in detecting and managing distress. A summary of patient reports was provided to the team via the electronic medical record, but it is not clear whether the oncology team addressed any of the issues. It could be that the reasonable referral rate was a result of the oncology team dealing with the problems. This RCT's model of psychosocial screening and care is similar to a collaborative care model researched in the United Kingdom, where screening, detection, and management of severe depression were taken outside the oncology management.21 Whereas patients with severe psychiatric morbidity benefit from such approach, its implementation may send a wrong message to the oncology teams, that detection and management of distress is not their responsibility. National guidelines in the United Kingdom recognize the key role of the oncology professionals in managing moderate levels of distress and support training programs in communication skills to increase staff confidence and effectiveness in supporting distressed patients.18 Further studies should be encouraged examining levels of collaboration and joint care between the oncology teams of physicians and nurses and the specialist psycho-oncology services.

Large-scale screening for distress is feasible and acceptable with good patient recruitment and retention rates. Extra resources (1.5 additional staff positions) were necessary to run the screening. The screening procedure generated referrals and the cost of these should be estimated when this approach is implemented in routine clinical practice. It would have been useful to provide data on what types of interventions were offered to those patients referred to specialist services to estimate costs, which would help future planning. A weakness of this study is the lack of health economic evaluation, which is essential if we are to persuade health care providers to financially support such services in increasingly pressurized health care systems.

This large and well-designed RCT provides further evidence that screening, detection, and appropriate management of distress and depression/anxiety in patients with cancer can be beneficial. It is likely that different models of psychosocial care will work in different health care settings. Community and hospital practices are encouraged to look at the efficacy and practicalities of different models of managing distress, to find which will best suit local practices before starting their implementation. At the same time, further research should look at the collaboration between the oncology team and specialist psycho-oncology services, and should include a health economic evaluation, to facilitate applications in clinical practice.

Supporting patients appropriately at key time points of their cancer journey has the potential to reduce the development of significant psychiatric morbidity, to help patients manage better the effect of treatment, and return to fully functional lives and survivorship after treatment.