Cancer distress screening: Needs, models, and methods

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Abstract

The idea of screening for distress in oncology populations is not new. Many recommendations have been made regarding the need for routine screening, and methods have been suggested for accomplishing this. However, a synthesis of this body of research is not readily available. This paper summarizes the literature documenting the levels of distress commonly found in cancer patients, followed by discussion of recommended standards for routine distress screening, and a summary of various programs that have attempted to establish clinical screening programs. The computerized quality of life (QL) screening literature is also briefly reviewed as potentially instructive. This review is followed by a theoretical and psychometric assessment of the various screening instruments and screening models that have been suggested in the literature or used clinically and a brief assessment of possible economic costs of psychosocial screening, ending with concrete suggestions for methods and models that could be widely adopted by psychosocial oncology programs.

Introduction

Psychosocial distress has long been identified as a significant issue for patients diagnosed with cancer. This has been well documented over the years. Also well documented, using rigorous methodology, is the ability of various psychosocial treatments to alleviate distress levels and improve quality of life (QL) in cancer patients. Where there has often been a disconnect 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. Studies show that although from one third to 45% of cancer patients routinely report significant distress, fewer than 10% are referred for psychosocial care. The separation between those who research distress in patients and those who provide care has been one primary reason that such seamless programs have not been routinely offered. Another common problem is chronic underfunding of psychosocial oncology programs, which inevitably leads to understaffing and critically underservicing this diagnosed “distressed” population.

In this paper, we will briefly review the literature documenting distress in cancer patients, then discuss the idea of routine screening for distress and summarize various attempts that have been made to establish clinical screening programs. This review will be followed by a theoretical assessment of the various screening instruments and models that have been suggested in the literature or used clinically and a brief assessment of possible economic costs of psychosocial screening, ending with concrete suggestions for methods and models that could be widely adopted by cancer programs.

Section snippets

Distress in cancer patients

Many studies have looked at distress levels and QL in cancer patients. The definition of distress as distinct from QL needs to be delineated, as these terms are sometimes used interchangeably, when this is not entirely accurate. In addition, the research on QL screening has progressed somewhat independently of the distress screening research. Indeed, there is much to be learned regarding routine distress screening from some well-established QL screening programs, which will be reviewed in the

Distress screening guidelines

Several agencies, both American and international, have developed guidelines for psychosocial care, which include screening guidelines. 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 programs [13]. Principle 7 states that “psychosocial service needs of patients and families are assessed systematically using appropriate tools” (p. 5). These

Distress screening programs

Perhaps one of the best known and most ambitious distress screening program that has worked to integrate screening and psychosocial clinical practice has been undertaken by the Johns Hopkins group, under the leadership of James Zabora [9], [11], [14], [15]. In this model, all new patients are screened with the Brief Symptom Inventory, 18-item version (BSI-18) and a psychosocial problem checklist at the time of admittance to the cancer center. Thus, new patients are targeted around the time of

Computerized distress screening

Another approach that has been gaining in popularity is computerized distress or QL screening. Whereas the majority of the distress screening literature has focussed on the time around initial diagnosis, most of the studies in the area of computerized screening are targeted further along the disease trajectory, usually during active treatment, follow-up, or palliation. The idea is to have the chosen questionnaire completed on a computerized interface, then immediately scored, with a report

Distress screening instruments and models

It would appear, then, that the need for screening and its potential to enhance the quality of treatment are relatively well established in the literature. The issues of how best to operationalize and assess distress seem to be the most lacking clarity at this point. This is not surprising considering the thousands of psychometric instruments available for the assessment of depression alone. There are many instruments that have been used or identified as appropriate for distress screening

Distress screening costs

Finally, the issue of the cost to the system of the implementation of screening programs is important to address, as in many cases, funding does tend to be the bottom line in consideration of additions or changes to program delivery. Zabora et al. [15] calculated in a 1990 paper the costs associated with a comprehensive screening program using a cost-benefit analysis. They determined that the cost of screening 6000 new patients per year would be US$12,000. This is contrasted with a calculated

Recommendations

Clearly, there is widespread recognition of the need for distress screening in oncology settings, as evidenced by the proliferation of discourse and research around the issue. The model applied depends on the resources available and the need of any given population and center. However, at this juncture, the most highly recommended model would be based upon the marriage of computerized assessment and real-time scoring, followed by timely triage and availability of appropriate intervention

Conclusions

Distress screening is useful and has become an ethical imperative in identifying patient need. Screening should be considered necessary for the provision of truly adequate psychosocial care. It does not add additional cost to the system and in the long term is likely to save money through medical cost offset. Appropriate screening and triage can also result in treatment of those patients who are most in need of care and may not have accessed it otherwise. A marriage between the knowledge

Acknowledgements

Dr. Linda Carlson is currently supported by a New Investigator Award from the Canadian Institutes of Health Research.

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