To become part of the team—patient experiences of participating in decision-making for a new treatment (proton beam therapy)

• Published in: Supportive care in cancer Vol. 32; no. 7; p. 442
• Main Authors: Sjövall, K., Ahlberg, K., Fessé, P., Fransson, P., Kristensen, I., Ohlsson-Nevo, E., Åkeflo, L., Langegård, U.
• Format: Journal Article
• Language: English
• Published: Berlin/Heidelberg Springer Berlin Heidelberg 2024; Springer Nature B.V
• Subjects: Adult; Aged; Aged, 80 and over; Brain cancer; Brain Neoplasms - psychology; Brain Neoplasms - radiotherapy; Decision Making; Female; Humans; Interviews as Topic; Male; Medicine; Medicine & Public Health; Middle Aged; Nursing; Nursing Research; Omvårdnad; Oncology; Pain Medicine; Participation; Participation in care; Patient Care Team - organization & administration; Patient Participation; Patient Preference; Patients; Proton beam therapy; Proton Therapy - methods; Qualitative Research; Radiation therapy; Radiotherapy; Rehabilitation Medicine; Shared decision making; Shared decision making; Radiotherapy; Participation in care; Proton beam therapy
• ISSN: 0941-4355; 1433-7339; 1433-7339
• DOI: 10.1007/s00520-024-08631-y

Purpose The aim of this study was to explore patients’ experience of participation in the treatment decision of proton beam therapy versus conventional radiotherapy. Background Proton beam therapy (PBT) has become a treatment option for some cancer patients receiving radiotherapy. The decision to give PBT instead of conventional radiotherapy (CRT) needs to be carefully planned together with the patient to ensure that the degree of participation is based on individuals’ preferences. There is a knowledge gap of successful approaches to support patients’ participation in the decision-making process, which is particularly important when it comes to the situation of having to choose between two treatment options such as PBT and CRT, with similar expected outcomes. Method We conducted a secondary analysis of qualitative data collected from interviews with patients who received PBT for their brain tumor. Transcribed verbatims from interviews with 22 patients were analyzed regarding experiences of participation in the decision-making process leading to PBT. Findings Participants experienced their participation in the decision-making process to a varying degree, and with individual preferences. Four themes emerged from data: to be a voice that matters, to get control over what will happen, being in the hand of doctors’ choice, and feeling selected for treatment. Conclusion A decision for treatment with PBT can be experienced as a privilege but can also cause stress as it might entail practical issues affecting everyday life in a considerable way. For the patient to have confidence in the decision-making process, patients’ preferences, expectations, and experiences must be included by the healthcare team. Including the patient in the healthcare team as an equal partner by confirming the person enables and facilitates for patients’ voice to be heard and reckoned with. Person-centered care building on a partnership between patients and healthcare professionals should provide the right basis for the decision-making process.