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272 Assessing patients’ care trajectories and their experiences, needs and issues
  1. Thanee M Uittenhout1,
  2. Anne-Marie Koch2,
  3. Jesse Jansen1,
  4. Asiong Jie2,
  5. Anne Stiggelbout3,4,
  6. Trudy VD Weijden1
  1. 1Department of Family Medicine, Care and Public Health Research Institute (CAPHRI), Faculty of Health Medicine and Life Sciences (FHML) Maastricht University, Maastricht, Limburg, Netherlands
  2. 2Department of Internal Medicine, Zuyderland Medical Center, Sittard, Netherlands
  3. 3Department of Biomedical Data Sciences, Leiden University Medical Center, Leiden, Netherlands
  4. 4Erasmus School of Health Policy and Management, Erasmus University Rotterdam


Introduction The aim of this study was to assess patients‘ experiences, needs and issues regarding treatment decision making in oncology.

Methods A longitudinal study was conducted in which patients from four hospitals in the Netherlands were shadowed through their journey in the care pathway until a treatment decision had been reached. We visualized patient journeys using metrolines. Consultations between patients and healthcare professionals were observed and audiotaped. We further conducted informal conversations after consultations and a semi-structured interview once a decision had been reached. Transcripts of audiotaped data were analyzed both deductively and inductively using thematic analysis.

Preliminary Results Five patients per hospital were included in four pathways (hematology, neuro- oncology, gynecology, upper gastro-intestinal): 79 observed consultations, 40 informal conversations and 20 interviews and questionnaires. Although patients’ experiences with the decision process varied, it was fragmented over time in all care pathways with treatment decisions being made made in more than one consultation. Three main themes emerged. First, factors influencing the decision process (e.g. time). Secondly, the different roles of stakeholders in the decision-making process (patient, professional, nurse specialist, informal caregiver). The perceived role of the professionals varied, from a purely ‘disease-centred’ role of the specialist to a ‘patient-centred’ role of the nurse specialist. Finally, the importance of a patient-centered approach (e.g. shared decision-making).

Preliminary Discussion Our triangulated data collection uncovered important themes for further research. In a next study we will assess the viewpoints from different healthcare professionals.

Preliminary Conclusion(s) Knowledge and awareness of the fragmented decision-making process over time is crucial for advancing research on treatment decision-making in oncology. Furthermore, it is essential to acknowledge and address; factors that influence the decision-making process, the roles of the different stakeholders and adopt a patient-centered approach.

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