{'fraction_non_alphanumeric': 0.0275049115913556, 'fraction_numerical': 0.0068762278978389, 'mean_word_length': 5.40566037735849, 'pattern_counts': {'":': 0, '<': 0, '<?xml version=': 0, '>': 0, 'https://': 0, 'lorem ipsum': 0, 'www.': 0, 'xml': 0}, 'pii_count': 0, 'substrings_counts': 0, 'word_list_counts': {'cursed_substrings.json': 0, 'profanity_word_list.json': 0, 'sexual_word_list.json': 0, 'zh_pornsignals.json': 0}}
P14.72 Involving patients and caregivers in the production of guidelines for palliative care in primary brain tumours: identification of intervention priorities


 
 
 Involving patients and caregivers is an important component of clinical guideline development. The three main Italian scientific associations for neurology, neuro-oncology and palliative care (SIN-AINO-SICP) recently appointed a joint task force (TF) of clinicians and researchers to develop specific guidance on palliative care of people with primary brain tumours, following the GRADE approach. To identify clinical questions meaningful to the patients and caregivers, a qualitative approach was used.
 
 
 
 Based on the existing literature and on consensus, the TF identified nine intervention areas, whose relevance was apprised by patients (via personal semi-structured interviews) and bereaved caregivers (via focus groups, FGs) from five tertiary neuro-oncology centres. Participants were prompted to provide their personal disease-related experience, and were asked to elicit the areas that mostly impacted their own lives. Interviews and FGMs were audio-recorded, transcribed and analysed using thematic analysis.
 
 
 
 Twenty interviews and five FGs (28 caregivers) were completed between late 2020 and early 2021. Preliminary findings show that all the pre-specified areas were defined as important by participants. Most discussed topics were communication, organization and service satisfaction, cognitive and psychological issues, and advance care planning (ACP). Caregivers focused their discussions on the need for patient psychological support, difficulties experienced with symptoms control (e.g. epileptic seizures, behavioural changes), communication and organizational issues.
 
 
 
 Participation of Italian patients with brain tumours and family caregivers was high and information-rich. All of the nine guideline intervention areas were considered important, communication, care organization, symptom control and ACP being the most discussed.
