Patients’ needs in Proton Therapy: a survey among 10 European Facilities


Patients’ needs in Proton Therapy: a survey among 10 European Facilities

Mazzola, G. C.; Bergamaschi, L.; Vincini, M.; Pepa, M.; Zaffaroni, M.; Volpe, S.; Rombi, B.; Doyen, J.; Fossati, P.; Haustermans, K.; Hoyer, M.; Langendijk, H.; Matute, R.; Orlandi, E.; Rylander, H.; Troost, E. G. C.; Orecchia, R.; Alterio, D.; Jereczek-Fossa, B.

Aims: The number of Proton Therapy (PT) facilities is still limited worldwide, and the access to treatment could
be characterized by patients’ logistic and economic challenges. Aim of the present survey is to assess the support
provided to patients undergoing PT across Europe.
Methods: Through a personnel contact, an online questionnaire (62 multiple-choice and open-ended questions)
via Microsoft Forms was administered to 10 European PT centers. The questionnaire consisted of 62 questions
divided into 6 sections: i) personal data; ii) general information on clinical activity; iii) fractionation, concurrent
systemic treatments and technical aspects of PT facility; iv) indication to PT and reimbursement policies; v)
economic and/ or logistic support to patients vi) participants agreement on statements related to the possible
limitation of access to PT. A qualitative analysis was performed and reported.
Results: From March to May 2022 all ten involved centers filled the survey. Nine centers treat from 100 to 500
patients per year. Paediatric patients accounted for 10–30%, 30–50% and 50–70% of the entire cohort for 7, 2
and 1 center, respectively. The most frequent tumours treated in adult population were brain tumours, sarcomas
and head and neck carcinomas; in all centers, the mean duration of PT is longer than 3 weeks. In 80% of cases,
the treatment reimbursement for PT is supplied by the respective country’s Health National System (HNS). HNS
also provides economic support to patients in 70% of centers, while logistic and meal support is provided in 20%
and 40% of centers, respectively. PT facilities offer economic and/or logistic support in 90% of the cases. Logistic
support for parents of pediatric patients is provided by HNS only in one-third of centers. Overall, 70% of re-
spondents agree that geographic challenges could limit a patient’s access to proton facilities and 60% believe that
additional support should be given to patients referred for PT care.

Keywords: Proton therapy Facilities; Europe; Survey; Support strategies; Patients

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