A qualitative study investigating Australian cancer service outpatients’ experience of distress screening and management: what is the personal relevance, acceptability and improvement opportunities from patient perspectives?

Abstract

Purpose People 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. Methods Adult, 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. Results Four 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 implications Screening 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.

Implementing a nurse‐led screening clinic for symptom distress with community‐based referral for cancer survivors: A feasibility study

“…Referral to psychosocial support services was associated with observing significant declines in symptom distress over time. Being an uncontrolled study, we cannot attribute this unequivocally to interventions, our study does support the premise that SDS with appropriate support service referral probably helps in reducing symptom distress 35 . Half of the cases received nurse‐delivered self‐management‐based psycho‐education, via phone, suggesting that many patients with moderate‐to‐severe symptom distress can be effectively managed with modest resource investment 19 .…”

“…Being an uncontrolled study, we cannot attribute this unequivocally to interventions, our study does support the premise that SDS with appropriate support service referral probably helps in reducing symptom distress. 35 Half of the cases received nurse-delivered selfmanagement-based psycho-education, via phone, suggesting that many patients with moderate-to-severe symptom distress can be effectively managed with modest resource investment. 19 Nevertheless, 1-in-3 patients who were rescreened demonstrated persistent symptom distress, and 1-in-9 reported fluctuating symptom distress over time.…”

OptiScreen—training concept for nurses in oncology to perform psychosocial distress screening

“…Der nächste Schritt, bei als belastet identifizierten Patient_innen eine weitere psychologische Diagnostik und entsprechende weitere Behandlung einzuleiten, ist Fachkompetenz und Aufgabe der Psychoonkologie. Häufig ist die Verantwortlichkeit für die Durchführung des Screenings nicht klar geregelt und wird von Pflegekräften, dem Aufnahme- oder Casemanagement übernommen [ 17 ], jedoch fehlen diesen ohne Schulung Informationen über aktuelle psychoonkolog. Unterstützungsangebote [ 18 ].…”

“…Nichtsdestotrotz bleiben einige strukturelle Hürden bestehen, die mittels Training alleine nicht zu bewältigen sind. Eine wichtige Verbesserungsmöglichkeit der Screeningimplementierung liegt in der verfügbaren Zeit für das Screening sowie Training des Personals [ 17 ]. Auch bei Implementierung elektronischer Screenings bleibt der Bedarf nach einer Schulung bestehen, da die Durchführung des Screenings nicht unbedingt zu einer Weiterleitung zu bedarfsgerechten Angeboten führt [ 29 ].…”

Distress and psychosocial support seeking: A comparison of rural and metropolitan oncology patient experiences

“…It has been suggested that a qualitative approach would facilitate a fuller understanding of the issues, thus enabling service providers to respond appropriately 12,15 . While some research has explored reasons that cancer patients decline supportive care qualitatively, they either did not fully explore rural differences, 28 did not consider them at all, 29 or did not contrast them with metropolitan experiences 30,31 …”