patients‘ views on precision cancer medicine qualitative

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Discussion The results underline oncologists’ important role in the context of PCM: the trust in them may buffer lacking or incomprehensible information as well as uncertainty regarding the personal benefit of participating in the program. Further, participating in a PCM program allows patients to perceive their treatment as more individual. Feeling more effective and in good hands meets a distinct need in the usually quite heteronomous situation. Patients experience their treatment as more ‘precise’ and ‘personalized’ due to PCM. These aspects may portray a distinct starting point for psycho-oncology. Future studies should investigate how this perception changes over the course of a PCM treatment. A deeper understanding of patients’ needs is necessary to foster an open, helpful communication about PCM and its impacts between oncologists and patients. Background Precision Cancer Medicine (PCM) aims to identify individual tumor characteristics, e.g. via tumor gene sequencing methods in order to adjust treatment accordingly [1]. PCM is mostly offered to patients at an advanced tumor stage, having passed standard therapies. Although for many entities evidence is missing, scientist, caregivers and media often communicate personalized therapy options with exaggerated optimism and enthusiasm [2]. The conflict between high hopes and reality poses manifold challenges to doctors and psychologists. To cope with these new challenges, new interdisciplinary approaches are needed in order to identify patients’ needs in the setting of PCM. Patients‘ Views on Precision Cancer Medicine - Qualitative Analysis with MAXQDA Rohrmoser A. 1 , Pichler T. 2 , Goerling U. 1 & Herschbach P. 2 1 Charité Comprehensive Cancer Center, Charité – Universitätsmedizin Berlin; 2 Roman-Herzog-Comprehensive Cancer Center, Klinikum rechts der Isar der Technischen Universität München Methods This qualitative study included 30 tumor patients (16 male, 14 female; mean age: 46 years, median time since diagnosis: 9 months) who took part in a diagnostic PCM program but had not yet received their tumor-genome sequencing results. Each person participated in a semi-structured interview (approx. 20min) regarding their knowledgeability and expectations about the diagnostic PCM program. Further, sociodemographic, illness- and distress-related data were complied. The interview transcripts were then analyzed using MAXQDA (see workflow) and following deductive- inductive content analysis according to Kuckartz [3]. Writing case summaries and discussing potential categories with medical and methodological experts throughout the analysis provided further reflection to refine the results. Literatur [1] Personalisierte Krebsmedizin: Für jeden Patienten die richtige Medizin. [Abruf 10.07.2018]; https://www.krebsgesellschaft.de/onko-internetportal/basis-informationen-krebs/basis- informationen-krebs-allgemeine-informationen/personalisierte-krebsmedizin.html [2] McFarland, DC., Blakler, L. Holland, J. New challenges to psycho‐oncology research: Precision medicine oncology and targeted therapies. Psycho‐Oncology. 2017;26:144–146. [3] Kuckartz, U. 2016. Qualitative Inhaltsanalyse: Methoden, Praxis, Computerunterstützung. 3., überarbeitete Auflage ed., Weinheim: Beltz Juventa. Research Questions Therefore, it is important to gain insight into patients’ views of PCM. This study, thus, explores: 1) How informed do tumor patients feel about their diagnostic PCM program? 2) What expectations do tumor patients have of their diagnostic PCM program? Corresponding authors: Amy Rohrmoser ([email protected]), Theresia Pichler ([email protected]) PRINTING LISTS OF CATEGORIES AND CODES FOR DISCUSSION IN THE RESEARCH TEAM / COLLOQUIUM CODING THE INTERVIEW TRANSCRIPTS Results 1) Knowledgeability The patients generally felt well informed (M=7, SD=2.3; measured via visual analogue scale: 0 ‘no information’ and 10 ‘very good information’). However, they mentioned several complex and at times burdening aspects regarding their level of information (see figure 1). Between the poles of varying levels of knowledgeability and uncertain test results, the patients’ oncologist played a crucial role: he / she was the vital person of trust and pivotal point for participating in the PCM program. WORKFLOW: QUALITATIVE ANALYSIS WITH MAXQDA FINDING QUOTES THAT SERVE AS EXAMPLES FOR CATEGORIES Figure 1: Knowledgeability about PCM program as experienced by tumor patients Knowledge and limited understanding Need for information Waiting in uncertainty Trust in the oncologist Personal Validation 1) Doing something against the cancer 3) Learning more about my cancer 2) Doing something for research Figure 2: Expecations about PCM program as experienced by tumor patients 2) Expectations Patients named several key expectations (see figure 2). Moreover, they expressed to feel meaningful, more individually considered and in ‘good hands’ as a result of participating in the rather exclusive program (main category ‘personal validation’). Overall, the patients’ expectations seemed to be closely related to their wishes, hopes and motives for participating. SORTING AND CATEGORISING THE CODES

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Page 1: Patients‘ Views on Precision Cancer Medicine Qualitative

Discussion

The results underline oncologists’ important role in the context of PCM: the trust in themmay buffer lacking or incomprehensible information as well as uncertainty regarding thepersonal benefit of participating in the program.Further, participating in a PCM program allows patients to perceive their treatment asmore individual. Feeling more effective and in good hands meets a distinct need in theusually quite heteronomous situation. Patients experience their treatment as more‘precise’ and ‘personalized’ due to PCM.These aspects may portray a distinct starting point for psycho-oncology. Future studiesshould investigate how this perception changes over the course of a PCM treatment. Adeeper understanding of patients’ needs is necessary to foster an open, helpfulcommunication about PCM and its impacts between oncologists and patients.

Background

Precision Cancer Medicine (PCM) aims to identify individual tumor characteristics, e.g. viatumor gene sequencing methods in order to adjust treatment accordingly [1]. PCM ismostly offered to patients at an advanced tumor stage, having passed standardtherapies. Although for many entities evidence is missing, scientist, caregivers and mediaoften communicate personalized therapy options with exaggerated optimism andenthusiasm [2]. The conflict between high hopes and reality poses manifold challenges todoctors and psychologists. To cope with these new challenges, new interdisciplinaryapproaches are needed in order to identify patients’ needs in the setting of PCM.

Patients‘ Views on Precision Cancer Medicine -Qualitative Analysis with MAXQDA

Rohrmoser A.1, Pichler T.2, Goerling U.1 & Herschbach P.2

1Charité Comprehensive Cancer Center, Charité – Universitätsmedizin Berlin; 2Roman-Herzog-Comprehensive Cancer Center, Klinikum rechts der Isar der Technischen Universität München

Methods

This qualitative study included 30 tumor patients (16 male, 14 female; mean age: 46years, median time since diagnosis: 9 months) who took part in a diagnostic PCM programbut had not yet received their tumor-genome sequencing results.Each person participated in a semi-structured interview (approx. 20min) regarding theirknowledgeability and expectations about the diagnostic PCM program. Further,sociodemographic, illness- and distress-related data were complied. The interviewtranscripts were then analyzed using MAXQDA (see workflow) and following deductive-inductive content analysis according to Kuckartz [3]. Writing case summaries anddiscussing potential categories with medical and methodological experts throughout theanalysis provided further reflection to refine the results.

Literatur[1] Personalisierte Krebsmedizin: Für jeden Patienten die richtige Medizin. [Abruf 10.07.2018]; https://www.krebsgesellschaft.de/onko-internetportal/basis-informationen-krebs/basis-informationen-krebs-allgemeine-informationen/personalisierte-krebsmedizin.html[2] McFarland, DC., Blakler, L. Holland, J. New challenges to psycho‐oncology research: Precision medicine oncology and targeted therapies. Psycho‐Oncology. 2017;26:144–146.[3] Kuckartz, U. 2016. Qualitative Inhaltsanalyse: Methoden, Praxis, Computerunterstützung. 3., überarbeitete Auflage ed., Weinheim: Beltz Juventa.

Research Questions

Therefore, it is important to gain insight into patients’ views of PCM. This study, thus,explores:

1) How informed do tumor patients feel about their diagnostic PCMprogram?

2) What expectations do tumor patients have of their diagnostic PCMprogram?

Corresponding authors: Amy Rohrmoser ([email protected]), Theresia Pichler ([email protected])

PRINTING LISTS OF CATEGORIES AND CODES FOR DISCUSSION IN THE RESEARCH TEAM / COLLOQUIUM

CODING THE INTERVIEW TRANSCRIPTS

Results

1) KnowledgeabilityThe patients generally felt well informed (M=7, SD=2.3; measured via visual analoguescale: 0 ‘no information’ and 10 ‘very good information’). However, they mentionedseveral complex and at times burdening aspects regarding their level of information (seefigure 1). Between the poles of varying levels of knowledgeability and uncertain testresults, the patients’ oncologist played a crucial role: he / she was the vital person of trustand pivotal point for participating in the PCM program.

WORKFLOW: QUALITATIVE ANALYSIS WITH MAXQDA

FINDING QUOTES THAT SERVE AS EXAMPLES FOR CATEGORIES

Figure 1: Knowledgeability about PCM program as experienced by tumor patients

Knowledge and limited understanding

Need for information

Waiting in uncertainty

Trust in the oncologist

Personal Validation

1) Doing something against the cancer

3) Learning more about my cancer

2) Doing something for research

Figure 2: Expecations about PCM program as experienced by tumor patients

2) ExpectationsPatients named several key expectations (see figure 2). Moreover, they expressed to feelmeaningful, more individually considered and in ‘good hands’ as a result of participating inthe rather exclusive program (main category ‘personal validation’). Overall, the patients’expectations seemed to be closely related to their wishes, hopes and motives forparticipating.

SORTING AND CATEGORISING THE CODES