Abstract
Background
In 2017, the European Association for Neuro-Oncology (EANO) published the guideline for palliative care (PC) in adults with glioma. The Italian Society of Neurology (SIN), the Italian Association for Neuro-Oncology (AINO), and the Italian Society for Palliative Care (SICP) joined forces to update and adapt this guideline to the Italian context and aimed to involve patients and carers in the formulation of the clinical questions.
Methods
During semi-structured interviews with glioma patients and focus group meetings (FGMs) with family carers of deceased patients, participants rated the importance of a set of pre-specified intervention topics, shared their experience, and suggested additional topics. Interviews and FGMs were audio-recorded, transcribed, coded, and analyzed (framework and content analysis).
Results
We held 20 interviews and five FGMs (28 carers). Both parties considered the pre-specified topics as important, chiefly information/communication, psychological support, symptoms management, and rehabilitation. Patients aired the impact of focal neurological and cognitive deficits. Carers reported difficulties in dealing with patient’s behavior and personality changes and appreciated the preservation of patient’s functioning via rehabilitation. Both affirmed the importance of a dedicated healthcare path and patient’s involvement in the decision-making process. Carers expressed the need to be educated and supported in their caregiving role.
Conclusions
Interviews and FGMs were well informative and emotionally challenging. Both parties confirmed the importance of the pre-specified topics, and carers suggested one additional topic: education/support to caregivers. Our findings strengthen the importance of a comprehensive care approach and of addressing the needs of both patients and their family carers.
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Data availability
The data that support the findings of this study are available on request from the corresponding author, AS. The data are not publicly available as they contain information that could compromise the privacy of research participants.
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Acknowledgements
This is a joint initiative of the Italian Society of Neurology (SIN), the Italian Society for Palliative Care (SICP), and the Italian Association for Neuro-Oncology (AINO). We thank Dr. Marta Perin, IRCCS di Reggio Emilia, and Dr. Valentina Strappa, IRCCS-Regina Elena National Cancer Institute, for their contribution. We are indebted to the persons with glioma, the caregivers, and the health professionals who provided their valuable input.
Funding
The consultation was supported by the SIN.
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The research project was approved by the Ethics Committees the IRCCS-Regina Elena National Cancer Institute (ref. 1240/19); Fondazione IRCCS Istituto Neurologico Carlo Besta (ref. 65/18.09.2019); Azienda USL-IRCCS di Reggio Emilia (ref. 2020/0063420); ASST Papa Giovanni XXIII, Bergamo (ref. 219/19). All participants provided signed informed consent. They did not receive any financial compensation for their participation in the study.
Conflict of interest
Dr. Solari reports grants from the Italian Multiple Sclerosis Foundation (FISM) and the European Academy of Neurology, during the conduct of the study; she serves as board member for Merck Serono and received personal fees from Almirall and Merck Serono, outside the submitted work. Dr. Rudà received honoraria for lectures or advisory boards from Bayer, Genenta, Novocure, and UCB. All the other authors have nothing to declare.
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Veronese, S., Bertocchi, E., Lissoni, B. et al. Patient and carer involvement in the formulation of research questions: findings from the Italian guideline on palliative care in adults with glioma. Neurol Sci 44, 2491–2499 (2023). https://doi.org/10.1007/s10072-023-06687-y
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DOI: https://doi.org/10.1007/s10072-023-06687-y