The AFTERCARE survey - The assessment and intervention survey for professionals working with individuals after brain surgery.


Previous European Low Grade Glioma Network (ELGGN) surveys provided the international community of professionals working with individuals harboring brain tumors with substantial information regarding common neuropsychological assessments (Mandonnet et al., 2017; Rofes et al., 2017), and plans for neuroradiological (Freyschlag et al., 2018) and adjuvant treatments (Darlix et al., 2018, Straube et al., 2018). These surveys have mainly focused on the preoperative, intraoperative and early post-surgical assessment, monitoring and treatment protocols. Here, we describe common neuropsychological and linguistic assessment and intervention practices during the first year after brain surgery and at long term. Additionally, we report experts’ opinions on how an ideal model of post-operative care should look like.
The survey was created using an online LimeSurvey platform and it was addressed to professionals working with the individuals after brain tumor surgery (e.g. neurosurgeons, neuropsychologists and therapists). The survey encompassed three blocks: general information, assessment and intervention, and it used multiple choice and open-ended response options. The general information block focused on describing the participating institutions. The assessment block was created around four axes: (1) speech and language, (2) cognitive abilities other than language, (3) emotional well-being and (4) health-related psychological distress, specifying both frequency (e.g. bedside, acute, long-term) and character (test materials) of the checkpoints. Finally, the intervention block contained queries about: speech therapy, general neuropsychological rehabilitation, individual psychotherapy, support group, occupational therapy, music therapy, physiotherapy and professional reinsertion programs, again specifying the frequency (e.g. once a week) and character (e.g. session duration) of proposed interventions. Both assessment and intervention blocks contained open spaces to obtain experts’ opinions and recommendations. The survey was disseminated using social media, conference announcements and both ELGGN and authors’ personal contact lists. The intended geographical area was Europe, but after positive signs of interest coming from other continents, we shared the Survey also in Asia and America.
45 centers participated in the general block of the survey – 40 European (mainly Occidental), 1 from Asia, 2 from North America and 2 from South America; 37 of the centers completed the assessment block and 27 both assessment and intervention blocks. All 37 institutions carry out awake brain surgeries and 92% of the centers administer at least one follow-up assessment (34/37), either for all patients (10/34), or under the following conditions: if individuals underwent awake brain surgery (18/24), harbor low grade glioma (13/24) and/or upon the patients’/siblings’ demand (both 11/24). All the centers administering follow-up assessments (34), evaluate speech and language and cognitive abilities after the surgery, 28 of them evaluate emotional well-being and 21 health-related psychological distress. With regard to the preferred assessment time points, 20/24 of the institutions assess patients at bedside, 19/24 of centers offer checkpoints during the early recovery and at long term, 13/24 in the late and 9/24 in the acute recovery stage. The most frequently applied assessment methods encompassed: spontaneous speech, object naming, verbal fluency and working memory. According to experts, the speech/language and general cognitive assessments were the most important, mainly when performed at the early stage of recovery (2-5 months after surgery) and at long term (more than 12 months after surgery). In the intervention block, 20/27 of institutions reported offering at least one post-surgical therapy, mainly for patients who presented with a bad post-operative recovery (10/20). Speech therapy and general neuropsychological rehabilitation were the most popular interventions (18/20 and 16/20) and according to experts’ opinions, these were the most adequate programs to offer. Additionally, a great number of centers participating in the intervention block reported offering as well physical (11/20), occupational (10/20) and individual psychological (10/20) therapy.
The vast majority of centers offer and recommend language, cognitive and emotional care during the first year after brain surgery. Future work needs to be undertaken to understand why a portion of the respondents did not complete the intervention block and to gather more information regarding the assessment and intervention plans implemented in the Central/Eastern European Institutions. Data acquisition is still ongoing with the intended sample of 40 fully completed surveys for May 2019. Thanks to the information gathered in this survey we will be able to better understand the status quo of the field and design better assessments and intervention plans in the future.

Oral presentation at the 14th European Low Grade Glioma Network Meeting