Involving patients and caregivers in the production of guidelines for palliative care in primary brain tumours: Identification of intervention priorities

Abstract BACKGROUND 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. MATERIAL AND METHODS 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. RESULTS 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. CONCLUSION 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.

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Over-All Accuracy of 99mTc-Pertechnetate Brain Scanning for Brain Tumours – Study of 471 Patients

Nuklearmedizin ◽

10.1055/s-0037-1620701 ◽

1978 ◽

Vol 17 (06) ◽

pp. 249-253

Author(s):

E. Pétursson ◽

B. Sigurbjörnsson ◽

D. Davidsson ◽

O.G. Björnsson

Keyword(s):

Brain Metastases ◽

Brain Tumours ◽

True Negative ◽

Diagnostic Reliability ◽

Radioisotope Scanning ◽

Primary Brain Tumours ◽

99Mtc Pertechnetate

A 3-year follow-up and re-evaluation of all scans on all patients referred for brain scanning in Iceland during 1 year was performed in order to assess the diagnostic reliability of radioisotope scanning for brain tumours. The study included 471 patients. Of these 25 had primary brain tumours and 7 brain metastases. Scans were positive and correctly interpreted in68 % of the patients with primary brain tumours and in 3 of the 7 patients with metastases. The over-all accuracy of brain scanning for brain tumours defined as the total number of correct positive scans and correct negative scans versus total number of scans examined was 96%, this figure being mainly influenced by the high number of true negative scans.

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Mortality due to primary brain tumours in China and detection rate in people with suspected symptoms: a nationally representative cross-sectional survey

World Journal of Surgical Oncology ◽

10.1186/s12957-021-02179-5 ◽

2021 ◽

Vol 19 (1) ◽

Author(s):

Bin Jiang ◽

Hongmei Liu ◽

Dongling Sun ◽

Haixin Sun ◽

Xiaojuan Ru ◽

...

Keyword(s):

Brain Tumour ◽

Brain Tumours ◽

Detection Rate ◽

Epidemiological Data ◽

Cross Sectional Survey ◽

Cross Sectional ◽

Detection Rates ◽

Primary Brain Tumours ◽

Symptom Screening ◽

Nationally Representative

Abstract Background and purpose Epidemiological data on primary brain tumours (PBTs) are lacking due to the difficulty in case ascertainment among the population. Thus, we aimed to estimate mortality due to PBTs in China nationwide and the detection rate in people with suspected symptoms. Methods A multistage, complex sampling survey regarding mortality due to PBTs in Chinese individuals was carried out by reviewing all causes of death within a year. The detection rates in people with suspected symptoms were estimated based on PBT symptom screening and neurologist reviews and compared between groups by logistic regression analysis. Results Weighted mortality due to PBT was 1.6 (0.8–3.3) per 100,000 population in Chinese individuals, 1.8 (0.7–4.6) per 100,000 population in men, and 1.5 (0.5–4.5) per 100,000 population in women. Among 14,990 people with suspected symptoms, the PBT detection rate was 306.9 (95% CI 224.7–409.3) per 100,000 population in the total population, 233.0 (95% CI 135.7–373.1) per 100,000 population in men, and 376.9 (95% CI 252.4–546.3) per 100,000 population in women. People with an unsteady gait (OR 2.46; 95% CI 1.09–5.51; P=0.029), visual anomalies (3.84; 1.88–7.85; P<0.001), and headache (2.06; 1.10–3.86; P=0.023) were more likely to have a brain tumour than those without corresponding symptoms, while people with dizziness/vertigo were less likely to have a brain tumour than those without corresponding symptoms (0.45; 0.23–0.87; P=0.017). Conclusions Mortality due to PBT in China was low, with a nationwide estimate of 21,215 (10,427–43,165) deaths attributable to PBTs annually. However, the detection rate of PBTs can be greatly improved based on symptom screening in the population.

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