Distress management in cancer patients in Puerto Rico

The output phase

In the output phase, a graphic representing the process of emotional assessment at the institution was created and then modified. PHQ-9 was added to the process when it was found suitable to assess level of depression contributing to the identification of patients requiring psychological and psychiatric assistance which by other means would be missed. PHQ-9 was useful in the busy clinical setting as it was completed, scored and interpreted in minutes. It showed the potential for routine evaluations when looking to identify improvement or deterioration in depression levels thus helping to monitor responses to treatment and providing insights for follow up interventions. As stated by NCCN guidelines, distress should be monitored, documented and managed at all stages of the cancer continuum.

Results and discussion

The protocol for distress management at HSPOH is based on the 2013 NCCN guidelines. Cancer patients are screened for levels of distress in all settings (inpatients and outpatients). Screening is held with the DST Spanish translation at the moment of diagnosis or as soon as possible after a diagnosis is made. Screening for distress is also done before or after surgery, in recurrence or progression, and when clinically indicated. Patients are informed that distress management is an essential part of their care and are encouraged to provide information so that we can make a proper need assessment.

Patients are screened by the psychosocial coordinator or patient navigator who administers the DST followed by in-depth interviews for additional appraisal. An action plan is designed based on patient needs, which include their intervention and the intervention of other members of the psychosocial team from the institution and/or from the community. Additional in-house health professionals contributing in distress management include, but are not limited to: physicians; clinical psychologists; health educators; social workers; dietitians; chaplains; and physical, respiratory, speech, and/or swallow therapists. Follow-up and rescreening sessions are scheduled to assure coordination of services between those health professionals as well as to secure continuity of distress management during all stages of the cancer continuum.

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The results of the DST are filed in patient medical records. Members of the psychosocial team also document their interventions in the patient medical record, which helps in the exchange of information among the cancer care team. The psychosocial team meets once a month – or as required for extraordinary cases – to review and discuss the cases, determine the best options for distress management, and identify areas for psychosocial care improvement. Those findings and the results of distress management in patient level of satisfaction are then reported and discussed quarterly by the psychosocial coordinator and the cancer committee.

Figure 2 shows in what phase of emotional distress assessment the PHQ-9 was included. Patients reporting four or more of the six areas of concern related to emotional distress in the DST (Figure 1) are automatically referred to a mental health specialist. But when patients report three areas of concern with no clear data on their specific level of depression, PHQ-9 is administered to differentiate those who need a mental health specialist from those who could be adequately supported by health education and support group interventions. In this way detrimental outcomes such as duplicity and over or underuse of services and resources are reduced. In addition, it is recognized that using an interview after the administration of the DST to determine distress management actions does not always provide enough information about a patient’s emotional circumstances and previous comorbidities. Patient responses during interviews may be influenced by the patient’s level of literacy, verbal comprehension, and communication style,²⁴ so emotional distress can go unrecognized during interviews, resulting in delays for treatment and supportive care.

High-quality standards of care lead to the simultaneous management of factors affecting patient health in a coordinated continuum of care. They emphasize the development of protocols for supportive care services, focusing on the diversity of patient needs aside from the clinical treatment of a disease. Traditionally, disease management was based in a biomedical framework with emphasis in the biological component of illnesses and the prevention of disease transmission. Treating physical symptoms after diagnosis to prevent mortality was the standard of care, thus reflecting the predominant epidemiological approach ruling medical practice when infectious diseases were leading cause of death. Such an approach had strong limitations in that it did not consider emotional, social, and spiritual variables and their implications for patient health. As chronic diseases such as cancer expanded the scope of human maladies, frameworks for disease management changed and new approaches emerged.²⁵ New socio-ecological models were applied, based on the assumption that health is maintained to a greater extent as a result of how effective the multidimensional factors of patient health are undertaken.

National guidelines in oncology consider such socio-ecological models emphasizing the delivery of patient-centered, interdisciplinary, and evidence-based care. That does not mean that institutions should apply protocols of psychosocial care as previously developed, but that they should test, review, adapt, and improve them during the implementation of the care. In fact, NCCN encourages conducting trials to examine protocols, screening instruments, and models of intervention to determine applicability to particular settings.²

Findings from a study by NCCN member institutions to evaluate progress of implementing distress management guidelines found that 53% (n = 8) of respondent institutions conducted routine distress screening. Of those, 37.5% (3) relied only on interviews. That finding is of concern because if interviews are not standardized and have not been systematically evaluated, then their sensitivity and specificity in identifying distressed patients is unknown.²⁶ Accordingly, the process described in this article and the PHQ-9 validation was an effort to standardize emotional distress management, and was underlined as an achievement during the CoC accreditation visit to the cancer center in December 2013. The hospital was accredited as a comprehensive community cancer center with gold commendations, becoming the first privately owned hospital in Puerto Rico to achieve the accreditation.