Cancer patients' expectations when undergoing extensive molecular diagnostics—A qualitative study

Abstract

Objective: Precision cancer medicine (PCM) aims at identifying tumor-driving molecular characteristics to improve therapy. Despite early successes for some cancers, the approach faces manifold challenges. Patients undergoing extensive molecular diagnostics (MD) may hope for personal benefit, although chances are small. In order to offer suitable support to this group, health-care professionals need to gain insight into patients' experience. Thus, this study sought to explore the expectations of cancer patients undergoing MD of their tumor.Methods: In two German Comprehensive Cancer Centers, 30 patients with advanced-stage cancer who had exhausted conventional treatment and had consented to extensive, research-oriented MD (whole-genome sequencing n = 24, panel sequencing n = 6) participated in semi-structured interviews. Following thematic content analysis by Kuckartz, the interview transcripts were coded for expectations of MD participation and topics closely related. Moreover, patients completed questionnaires on their sociodemographic characteristics, medical history, and psychosocial distress.Results: Patients reported to be expecting (a) an improvement of their treatment, (b) a contribution to research, and/or (c) additional insight to their own cancer. Further, they described to feel individually appreciated and to have a reason to maintain hope for cure or recovery by participating in MD.Conclusions: Molecular diagnostics participation led patients to feel treated in a more "personalized" way, allowing them a greater sense of control in their situation of severe illness. Oncologists and psycho-oncologists need to ensure comprehensive information and empathetic support for patients undergoing extensive MD to balance their expectations and actual chances of clinical benefit. K E Y W O R D Scancer, oncology, hope, palliative care, precision medicine, psycho-oncology, qualitative research, whole-genome sequencing Ute Goerling and Peter Herschbach are joint senior authors.

Patients’ and Oncologists’ Knowledge and Expectations Regarding Tumor Multigene Next-Generation Sequencing: A Narrative Review

“…In the only study that focused on the attitudes and expectations of patients with advanced cancer who had undergone tumor multigene NGS but had not yet received results (Table 3), many patients reported realistic hope for better "individualized" treatment or contribution to research, but some expressed an unrealistic hope for cure [22].…”

Information, communication, and cancer patients’ trust in the physician: what challenges do we have to face in an era of precision cancer medicine?

“…Participants were screened for distress using a self-assessment questionnaire. This data has been reported earlier [12] and is not included in the present qualitative evaluation. Furthermore, study assistants explored aspects of information and expectations by means of a semi-structured interview guide (supplementary file 1).…”

“…According to experts' ratings, programs were highly comparable. For a detailed description of study methods, see also Rohrmoser et al [12].…”

“…For patients suffering from advanced stage cancer, maintaining hope in such a vulnerable period of disease seems crucial [9]. As a result, patients show high expectations of a personal treatment benefit [10][11][12].…”

“…The review of Wolyniec et al [17]-analyzing quantitative and qualitative studies on knowledge and information regarding genomic testing-found that in some studies, less than half of patients were able to reflect the procedure and contents of molecular genetic testing. Considering their high expectations, especially regarding a potential treatment benefit [12][13][14]18], patients might have difficulties dealing with disappointments. Recent literature emphasizes the need for adequate communication, education, and counseling to ensure informed consent in an era of PCM [10,11,19,20].…”