Inequalities in access to neuro-oncology supportive care and rehabilitation: A survey of healthcare professionals' perspectives

被引:3
作者
Boele, Florien [1 ,2 ]
Rosenlund, Lena [20 ]
Nordentoft, Sara [18 ]
Melhuish, Sara [14 ]
Nicklin, Emma [1 ]
Ryden, Isabelle [22 ]
Williamson, Aoife [23 ]
Donders-Kamphuis, Marike [4 ,5 ]
Preusser, Matthias [19 ]
Le Rhun, Emilie [11 ,12 ,13 ]
Kiesel, Barbara [10 ]
Minniti, Giuseppe [15 ,16 ,17 ]
Furtner, Julia [6 ]
Dirven, Linda [3 ]
Taphoorn, Martin [3 ]
Galldiks, Norbert [7 ,8 ,9 ]
Ruda, Roberta [21 ]
Chalmers, Anthony [24 ]
Short, Susan C. [25 ,26 ]
Piil, Karin [27 ,28 ]
机构
[1] Univ Leeds, St Jamess Univ Hosp, Leeds Inst Med Res, Leeds, W Yorkshire, England
[2] Univ Leeds, Leeds Inst Hlth Sci, Leeds, W Yorkshire, England
[3] Leiden Univ, Dept Neurol, Med Ctr, Leiden, Netherlands
[4] Haaglanden Med Ctr, Dept Neurosurg, The Hague, Netherlands
[5] Univ Med Ctr Rotterdam, Erasmus MC, Dept Neurosurg, Rotterdam, Netherlands
[6] Danube Private Univ, Fac Med & Dent, Res Ctr Med Image Anal & Artificial Intelligence, Krems, Austria
[7] Univ Cologne, Fac Med, Dept Neurol, Cologne, Germany
[8] Univ Cologne, Univ Cologne Hosp, Cologne, Germany
[9] Res Ctr Juelich, Inst Neurosci & Med INM 3, Julich, Germany
[10] Med Univ Vienna, Dept Neurosurg, Vienna, Austria
[11] Univ Hosp, Clin Neurosci Ctr, Dept Neurosurg, Zurich, Switzerland
[12] Univ Zurich, Zurich, Switzerland
[13] Univ Hosp, Clin Neurosci Ctr, Dept Neurol, Zurich, Switzerland
[14] St Bartholomews Hosp, Speech & Language Therapy Dept, London, England
[15] Dept Radiol Sci Oncol & Anat Pathol, Rome, Italy
[16] Sapienza Univ Rome, Rome, Italy
[17] IRCCS Neuromed, Pozzilli, Italy
[18] Copenhagen Univ Hosp, Dept Neurosurg, Rigshosp, Neuroctr, Copenhagen, Denmark
[19] Med Univ Vienna, Dept Med, Div Oncol, Vienna, Austria
[20] Reg Canc Ctr Stockholm Gotland, Stockholm, Sweden
[21] Univ Turin, Dept Neurosci, Div Neurooncol, Turin, Italy
[22] Univ Gothenburg, Inst Neurosci & Physiol, Sahlgrenska Acad, Dept Clin Neurosci, Gothenburg, Sweden
[23] Beatson West Scotland Canc Ctr, Glasgow, Lanark, Scotland
[24] Univ Glasgow, Sch Canc Sci, Glasgow, Lanark, Scotland
[25] Univ Leeds, Leeds Inst Med Res, Leeds, W Yorkshire, England
[26] Leeds Teaching Hosp NHS Trust, Dept Clin Oncol, Leeds, W Yorkshire, England
[27] Copenhagen Univ Hosp, Ctr Canc & Organ Dis, Dept Oncol, Rigshosp, Blegdamsvej 9, DK-2100 Copenhagen, Denmark
[28] Roskilde Univ, Dept People & Technol, Roskilde, Denmark
关键词
brain tumor; disparity; inequalities; rehabilitation; supportive/palliative care; HIGH-GRADE GLIOMA; BRAIN-TUMOR; UNMET NEEDS;
D O I
10.1093/nop/npae023
中图分类号
R73 [肿瘤学];
学科分类号
100214 ;
摘要
Background Neuro-oncology patients and caregivers should have equitable access to rehabilitation, supportive-, and palliative care. To investigate existing issues and potential solutions, we surveyed neuro-oncology professionals to explore current barriers and facilitators to screening patients' needs and referral to services.Methods Members of the European Association of Neuro-Oncology and the European Organisation for Research and Treatment of Cancer Brain Tumor Group (EORTC-BTG) were invited to complete a 39-item online questionnaire covering the availability of services, screening, and referral practice. Responses were analyzed descriptively; associations between sociodemographic/clinical variables and screening/referral practice were explored.Results In total, 103 participants completed the survey (67% women and 57% medical doctors). Fifteen professions from 23 countries were represented. Various rehabilitation, supportive-, and palliative care services were available yet rated "inadequate" by 21-37% of participants. Most respondents with a clinical role (n = 94) declare to screen (78%) and to refer (83%) their patients routinely for physical/cognitive/emotional issues. Survey completers (n = 103) indicated the main reasons for not screening/referring were (1) lack of suitable referral options (50%); (2) shortage of healthcare professionals (48%); and (3) long waiting lists (42%). To improve service provision, respondents suggested there is a need for education about neuro-oncology-specific issues (75%), improving the availability of services (65%) and staff (64%), developing international guidelines (64%), and strengthening the existing evidence-base for rehabilitation (60%).Conclusions Detecting and managing neuro-oncology patients' and caregivers' rehabilitation, supportive,- and palliative care needs can be improved. Better international collaboration can help address healthcare disparities.
引用
收藏
页码:484 / 493
页数:10
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