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How to live with a meningioma: experiences, symptoms, and challenges reported by patients.

ABSTRACT: Background:We aimed to explore gaps in the care of meningioma patients that could improve quality of care by better understanding symptoms experienced by patients at various stages of treatment, and afterwards. Methods:A novel 19-item self-administered questionnaire was provided for patients with meningiomas to complete by the American Brain Tumor Association (ABTA) over a 3-month period. Results:A total of 1852 unique respondents were included. Nearly one-third of all respondents felt they received insufficient information about meningiomas at initial diagnosis (N = 607, 32.9%) and 28.8% (N = 530) believed they received insufficient information about treatment options. In fact, 34.5% of respondents received the majority of their information from the internet and nonhealthcare professionals. The most common concerns after initial diagnosis were risks associated with surgery and/or treatment (36.5%) followed by how the tumor would impact daily life (25%) and the risk of tumor recurrence (12.4%). Respondents indicated that a list of resources available for patients with meningiomas (N = 597, 32.3%) would have been most beneficial in regards to their disease experience after their initial diagnosis. Moreover, we found that a substantial proportion of patients continued to report symptoms long after treatment, with fatigue being the most common compared to before treatment (38.2% vs. 57.7%, ? 2 = 128, P < .001). Conclusions:Patients with meningiomas exhibit symptoms that continue well after treatment with fatigue and cognitive impairments as the most bothersome. Moreover, patients report key communication gaps that can be addressed to improve their disease experience and care.

SUBMITTER: Nassiri F

PROVIDER: S-EPMC7415257 | biostudies-literature | 2020 Jan-Dec

REPOSITORIES: biostudies-literature

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How to live with a meningioma: experiences, symptoms, and challenges reported by patients.

Nassiri Farshad F Suppiah Suganth S Wang Justin Z JZ Badhiwala Jetan H JH Juraschka Kyle K Meng Ying Y Nejad Romina R Au Karolyn K Willmarth Nicole E NE Cusimano Michael M Zadeh Gelareh G

Neuro-oncology advances 20200101 1

<h4>Background</h4>We aimed to explore gaps in the care of meningioma patients that could improve quality of care by better understanding symptoms experienced by patients at various stages of treatment, and afterwards.<h4>Methods</h4>A novel 19-item self-administered questionnaire was provided for patients with meningiomas to complete by the American Brain Tumor Association (ABTA) over a 3-month period.<h4>Results</h4>A total of 1852 unique respondents were included. Nearly one-third of all resp ...[more]

PMID: 32793887

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Project description:Purpose: Psychotic experiences in childhood (such as hearing voices or being suspicious) represent an important phenotype for early intervention. However, these experiences can be defined in several ways: self-reported psychotic experiences (SRPE) rely exclusively on the child's report, clinically validated psychotic experiences (CRPE) are based on clinical assessment, and attenuated psychotic symptoms (APS) represents a categorization to do with clinical relevance in relation to severity. Very few studies have investigated how these distinctions impact clinical and other domains. The present study aims to compare SRPE, CRPE, and APS among children and adolescents. Methods: This study is part of the Brazilian High-Risk Cohort Study for Psychiatric Disorders, in which 2,241 individuals aged 6-14 years provided self-ratings of 20 psychotic experiences using the Community Assessment of Psychic Experiences (CAPE). A trained psychologist conducted an interview to validate or reject reported experiences and to rate the presence of APS and affective flattening. In parallel, parents provided information about child mental health to an independent interviewer. We tested the association of mutually exclusive categories of non-validated SRPE (nSRPE), clinically validated PE below the threshold for APS (nCRPE), and APS (nSRPE = 33%, nCRPE = 11%, APS = 6%), with parents' information about the child's positive attributes and levels of psychopathology and psychologist assessment of blunted affect. Results: Most associations were qualitatively similar, and there was a dose-response in the strength of associations across categories, such that APS > nCRPE > nSRPE. Experiences in all three categories were associated with female sex. nSRPE were associated with overall levels of psychopathology, but to a lesser degree than nCRPE and APS. APS and nCRPE were associated with less positive attributes, with APS more so than nCRPE. Only APS was associated with affective flattening. Conclusions: In children and adolescents, SRPE, CRPE, and APS all index liability for psychopathology, but as clinician rated relevance increases, associations get stronger and become evident across more domains.

Project description:BACKGROUND:No consensus based national standard for interhospital transports of critically ill patients exists in Norway. The local hospitals are responsible for funding, organizing and performing these transports, resulting in potentially different level of care for the critically ill patients depending on local hospital resources and not the level of severity in the patient's condition. The aim of this study was to examine how these transports are executed and to discover challenges during transports and potentials of improvement. METHODS:A qualitative study with 20 semi-structured interviews of doctors, nurses and ambulance personnel representing a wide range in experience and formal education, reflecting the different compositions of crews performing interhospital transports was conducted. A systematic text condensation of the interviews was performed to describe personal experiences and values. RESULTS:Few interviewees reported special adverse events when asked. Instead they chose to describe more general characteristics of the working environment, their own positive emotions or fears and the strengths and weaknesses of the organizational system. The prehospital working environment was described as different from the in-hospital environment. The personnel experienced being on their own during transports, lack of procedures and checklists and often no systematic education or demanded preparedness for participating. The resident doctors described pressure from elderly colleagues to participate in the transports. At the same time, all interviewees reported a self-interest in participating in these transports. CONCLUSIONS:Safe interhospital transports of the critically ill patients are challenged by the characteristics of the out of hospital environment. The transports are described as potentially unsafe for both patients and personnel. Systematic education is warranted, highlighting the use of checklists and special educational programs in prehospital critical care medicine. The strong personal interest to participate in these transports may serve as a barrier against changing todays system. To ensure the right level of competence and safety for each unique patient, it is imperative to standardize the interhospital transports on a national level, built on consensus from experienced prehospital personnel. TRIAL REGISTRATION:The trial is approved and registered by the local representative for the Norwegian Data Protection Authority as trial 13-7751.

Project description:AimsTo explore cancer trial coordinators' roles and challenges in administering patient-reported outcome (PRO) questionnaires, and establish what PRO-specific training and guidance they received and needed.MethodsEligible cancer trial coordinators experienced with PRO assessment from approved Australian sites participated in an audio-recorded, semi-structured interview (transcribed verbatim). Recruitment continued until data saturation. Transcripts underwent content analysis.ResultsTwenty coordinators participated (professional training: nursing (n = 12), science/research (n = 4), both (n = 4)). PRO administration formed a minor component of most (85%) coordinators' roles. PRO administration challenges included managing 'English second language' participants, participants' companions who attempted to complete questionnaires, burdensome questionnaires, and balancing their duty of care against trial requirements. Coordinators reported inconsistencies in PRO administration, which appeared to arise as a result of confusion and inconsistent or contradictory PRO training. Inconsistencies concerned whether/when they explained the purpose of PRO assessment, which participants they approached to complete PROs, and whether they used PRO trial data to inform care.Coordinators received PRO training from various sources; most commonly study-specific start-up meetings (45%) or from colleagues (30%). Two received no PRO-specific training. Despite the challenges reported, many (55%) felt they did not need further PRO training.ConclusionTrial coordinators receive inconsistent PRO-specific training and are often unclear how to prioritise different aspects of data quality when faced with everyday challenges, leading to inconsistent methods, missing data, poor quality data, and even bias. Agreement on how coordinators should prioritise the requirements of PRO studies is a necessary pre-requisite for the development of much-needed, consensus-based PRO administration guidelines.

Dataset Information

How to live with a meningioma: experiences, symptoms, and challenges reported by patients.

Publications

How to live with a meningioma: experiences, symptoms, and challenges reported by patients.

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