Abstract
PurposePeople diagnosed with cancer experience high distress levels throughout diagnosis, treatment, and survivorship. Untreated distress is associated with poor outcomes, including worsened quality of life and higher mortality rates. Distress screening facilitates need-based access to supportive care which can optimize patient outcomes. This qualitative interview study explored outpatients’ perceptions of a distress screening process implemented in an Australian cancer center.MethodsAdult, English-speaking cancer outpatients were approached to participate in face-to-face or phone interviews after being screened by a clinic nurse using the distress thermometer (DT). The piloted semi-structured interview guide explored perceptions of the distress screening and management process, overall well-being, psychosocial support networks, and improvement opportunities for distress processes. Thematic analysis was used.ResultsFour key themes were identified in the 19 interviews conducted. Distress screening was found to be generally acceptable to participants and could be conducted by a variety of health professionals at varied time points. However, some participants found “distress” to be an ambiguous term. Despite many participants experiencing clinical distress (i.e., DT ≥ 4), few actioned referrals; some noted a preference to manage and prevent distress through informal support and well-being activities. Participants’ diverse coping styles, such as positivity, acceptance, and distancing, also factored into the perceived value of screening and referrals.Conclusion and implicationsScreening models only measuring severity of distress may not be sufficient to direct care referrals, as they do not consider patients’ varying coping strategies, external support networks, understanding of distress terminology, and motivations for accessing supportive care services.
Highlights
People with a cancer diagnosis experience distress at higher levels than that of the general population during diagnosis and treatment [1]
We provided participants the National Comprehensive Cancer Network (NCCN) definition of distress in our interviews, and they had recently been through the process of distress screening, there was some lack of understanding as to the meaning of distress
Participants separated their experiences of anxiety from the term “distress.” While distress is defined within research and clinically as encompassing common and normal feelings, participants saw this term as representing the more severe end of this continuum. This qualitative exploration revealed important information on the experience of brief distress screening among a group of people with cancer who had been screened as part of their
Summary
People with a cancer diagnosis experience distress at higher levels than that of the general population during diagnosis and treatment [1]. The implementation of distress screening programs is poorly reported, and it is likely that only select components of evidence-based approaches are being incorporated in health services, such as one-step screening or no rescreening [18, 19]. These two factors may have contributed to emerging reports that health professionals and services are unclear on the potential benefits of distress screening programs and unable to rationalize both the real and opportunity cost of yet another clinical activity [20]
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