scholarly journals COT-29 The Japan Brain Tumor Alliance: Achievements in 2020–2021: highlights for neuro-oncologists and healthcare professionals

2021 ◽  
Vol 3 (Supplement_6) ◽  
pp. vi31-vi31
Author(s):  
Keiko Nomura ◽  
Laureline Gatellier ◽  
Shuji Yamaguchi ◽  
Shigeo Kato ◽  
Hisato Tagawa
Keyword(s):  
Brain Tumor ◽  
Health Care Professionals ◽  
Public Involvement ◽  
Healthcare Professionals ◽  
Occupational Therapists ◽  
Patient And Public Involvement ◽  
Tumor Patients ◽  
Non Profit ◽  
Tumor Patient ◽  
Community Information

Abstract Brain tumors are a major shock at diagnosis for patients and their families, and the journey is hectic, impacted in various and complex ways, including acute and chronic episodes. The Japan Brain Tumor Alliance is a non-profit organisation, established in 2006 to support patients and their families. As our key activity, JBTA offers nation-wide patient support through patient-gathering meetings with and without health care professionals to openly share needs, issues and concerns, partly summarized and shared in the scientific field (Gatellier, 2021, OT Journal, vol 55 no.3, 257–259; Gatellier, 2021, MASCC Annual Meeting). JBTA actively collaborates with the International Brain Tumor Alliance, with recent outcome of an international survey featuring the brain-tumor patient and caregiver experience during COVID-19 pandemic (Voisin et al., 2020, Neuro-oncology advances, 2(1), vdaa104). As part of collaboration with healthcare professionals in 2020–21, JBTA achievements include the review of clinical guidelines (as part of Patient and Public Involvement activity), information-sharing events with the Japan Clinical Oncology Group and the seminar with a group including occupational therapists. In addition, to highlight patients’ needs and priorities to the neuro-oncology community, since March 2020, JBTA shares the Japanese translation of the monthly IBTA e-newsletter broadcasting the latest and most relevant scientific, community information and brain tumor-related events around the world to healthcare professionals and brain tumor patients and families in Japan. These enlightening events place JBTA in an ideal position to lead research in the direction most meaningful to brain tumor patients.

scholarly journals Defining standards in colorectal optimisation: a Delphi study protocol to achieve international consensus on key standards for colorectal surgery prehabilitation

BMJ Open ◽  
2021 ◽  
Vol 11 (3) ◽  
pp. e047235
Author(s):  
Iona Pearson ◽  
Sue Blackwell ◽  
Rebecca Fish ◽  
Sarah Daniels ◽  
Malcolm West ◽  
...  
Keyword(s):  
Systematic Review ◽  
Colorectal Surgery ◽  
Outcome Measures ◽  
Delphi Study ◽  
Public Involvement ◽  
Healthcare Professionals ◽  
Patient And Public Involvement ◽  
International Consensus ◽  
Elective Colorectal Surgery ◽  
Patient Related Outcome

IntroductionPrehabilitation in colorectal surgery is evolving and may minimise postoperative morbidity and mortality. With many different healthcare professionals contributing to the prehabilitation literature, there is significant variation in reported primary endpoints that restricts comparison. In addition, there has been limited work on patient-related outcome measures suggesting that patients with colorectal cancer needs and issues are being overlooked. The Defining Standards in Colorectal Optimisation Study aims to achieve international consensus from all stakeholders on key standards to provide a framework for reporting future prehabilitation research.Methods and analysisA systematic review will identify key standards reported in trials of prehabilitation in colorectal surgery. Standards that are important to patients will be identified by a patient and public involvement (PPI) event. The longlist of standards generated from the systematic review and PPI event will be used to develop a three-round online Delphi process. This will engage all stakeholders (healthcare professionals and patients) both nationally and internationally. The results of the Delphi will be followed by a face-to-face interactive consensus meeting that will define the final standards for prehabilitation for elective colorectal surgery.Ethics and disseminationThe University of Glasgow College of Medical, Veterinary and Life Sciences Ethics Committee has approved this protocol, which is registered as a study (200190120) with the Core Outcome Measures in Effectiveness Trials Initiative. Publication of the standards developed by all stakeholders will increase the potential for comparative research that advances understanding of the clinical application of prehabilitation.PROSPERO registration numberCRD42019120381.

How to improve diversity in patient and public involvement

2021 ◽  
pp. 1-8
Author(s):  
Rebecca Golenya ◽  
George D Chloros ◽  
Michalis Panteli ◽  
Peter V Giannoudis ◽  
Anthony Howard
Keyword(s):  
Lived Experiences ◽  
Public Involvement ◽  
Healthcare Professionals ◽  
Patient And Public Involvement ◽  
Future Research ◽  
Barriers To Participation ◽  
The Public ◽  
Common Barriers ◽  
Quality Of Research

Patient and public involvement involves ascertaining the opinions of and collaborating with patients and members of the public to holistically improve the quality of research. Patient and public involvement provides patients with a platform to use and share their lived experiences. This allows healthcare professionals to gain a deeper appreciation of the patient's perspective, which enables future research to be more patient centred and tailored to patients' requirements. Patient and public involvement aims to broadly encapsulate the opinions of the public, so ensuring diversity is recommended. This article provides a practical framework to increase diversity and engage hard-to-reach demographics in patient and public involvement. It highlights some common barriers to participation and methods for overcoming this, describes sampling frameworks and provides examples of how these have been adopted in practice.

scholarly journals Why Do People Undergo THR and What Do They Expect to Gain—A Comparison of the Views of Patients and Health Care Professionals

2020 ◽  
Vol 7 (6) ◽  
pp. 1778-1787
Author(s):  
Shayan Bahadori ◽  
Sarah Collard ◽  
Jonathan Mark Williams ◽  
Ian Swain
Keyword(s):  
Health Care ◽  
Health Care Professionals ◽  
Public Involvement ◽  
Well Being ◽  
Patient And Public Involvement ◽  
Future Research ◽  
Activity Monitors ◽  
Dog Walking ◽  
Future Research Project

Little concerted effort has been made to understand why individuals undergo total hip replacement (THR) surgery and their rehabilitation goals. Similarly, insight of views and perspective of health care professionals’ (HCPs) regarding surgery and what objective measures help them with decision-making is lacking. This patient and public involvement report aimed to explore both patients’ and HCPs’ perspectives of THR surgery. Twenty patients, 10 pre-THR, 10 post-THR, 9 physiotherapists, and 6 surgeons took part. Results suggest a consensus among patients and HCPs on pain reduction being the main reason for undergoing THR. The inability to carry out simple daily activities such as dog walking and sleep deprivation had a significant effect on patients’ mental and physical well-being. This article is the first to explore the views of THR patients and HCPs on reasons behind THR surgery amalgamated into a single report. As walking is important, wearable activity monitors are suggested as a possible motivator to enhance patient compliance to self-care rehabilitation and increase quality of life. A future research project on the use of such wearable activity monitors in enhancing mobility post-THR is therefore planned.

scholarly journals Service Users’ Involvement and Engagement in Interprofessional Care

2016 ◽  
Vol 55 (204) ◽  
pp. 103-106
Author(s):  
Bachchu Kailash Kaini
Keyword(s):  
Health Care ◽  
Health Care Professionals ◽  
Public Involvement ◽  
Healthcare Professionals ◽  
Service Users ◽  
Team Collaboration ◽  
Active Involvement ◽  
Interprofessional Care ◽  
Joint Decisions

Interprofessional care is joint working between health care professionals by pooling their skills, knowledge and expertise, to make joint decisions and learn from each other for the benefits of service users and healthcare professionals. Service users involvement is considered as one of the important aspects of planning, management and decision making process in the delivery of health care to service users. Service users’ involvement is not the same as public involvement and partnership arrangements in health care. The active involvement and engagement of service users in health care positively contributes to improve quality of care, to promote better health and to shape the future of health services. Service users are always at the centre of health care professionals’ values, work ethics and roles. Moreover, service users centred interprofessional team collaboration is very important to deliver effective health services.Keywords: interprofessional; service users; health care; benefits; collaboration. | PubMed

Care of the caregiver: Transitions at the end of life.

2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 152-152
Author(s):  
Margaretta Page ◽  
Idonah M. Molina ◽  
Judy Patt ◽  
Susan Marina Chang
Keyword(s):  
Palliative Care ◽  
Brain Tumor ◽  
End Of Life ◽  
Palliative Care Service ◽  
Transitions Of Care ◽  
Terminal Phase ◽  
Tumor Patients ◽  
Brain Tumor Patient ◽  
Tumor Patient ◽  
The Brain

152 Background: Transitions of care can be particularly stressful on cancer patients and caregivers when goals of care are changing, especially at the time when active specialty care shifts to hospice. There are common caregiver issues at the end of life for the brain tumor patient as for any cancer patient however there are a subset of challenging problems unique to the disease. One of the goals of the UCSF caregiver program is to provide information on effective care at home and at the end of life to the caregiver when faced with a family member with a progressive, life threatening brain tumor. Methods: The caregiver program at UCSF sought to overcome the major caregiver challenges of the brain tumor patient at the end of life in two ways. First, caregivers of patients at the terminal phase in the illness trajectory were proactively contacted by a member of the caregiver team to offer informational and emotional support around end-of-life issues. The team also makes contact with the hospice agency in order to provide information about specifics regarding symptoms, family dynamics, or any relevant history. Second, in collaboration with the palliative care service, a palliative care and end of life handbook for brain tumor patients was planned. Results: Since June 2013, 70 caregivers of patients have been identified as “high risk” for distress because of disease progression or transition to hospice care. In addition to providing support to the caregiver at the end of life, the palliative care handbook was produced and distributed. The handbook provided general information on the role of hospice, advance care planning, and bereavement and more importantly incorporates specific sections that highlight the unique challenges regarding neurological symptoms that include cognitive and behavioral changes, language difficulties, corticosteroid use and the inability of oral intake that can significantly affect anti-seizure medication administration. Conclusions: Additional focus to ease transitions for caregivers of brain tumor patients at end of life is needed. Future projects involve creating a handbook to provide resources to hospice professionals caring for brain tumor patients that will highlight common symptoms expected, (ie. seizures) and options for management.

scholarly journals Healthcare professionals’ perspectives on identifying and managing perinatal anxiety: a qualitative study

2019 ◽  
Vol 69 (688) ◽  
pp. e768-e776 ◽  
Author(s):  
Victoria Silverwood ◽  
Annabel Nash ◽  
Carolyn A Chew-Graham ◽  
Jacqualyn Walsh-House ◽  
Athula Sumathipala ◽  
...  
Keyword(s):  
Mental Health ◽  
Qualitative Study ◽  
Public Involvement ◽  
Healthcare Professionals ◽  
Mental Health Problems ◽  
Patient And Public Involvement ◽  
Perinatal Mental Health ◽  
Data Generation ◽  
Structured Interviews ◽  
Perinatal Anxiety

BackgroundPerinatal mental health problems are those that occur during pregnancy or up to 12 months postpartum, and affect up to 20% of women. Perinatal anxiety (PNA) is at least as common as depression during the perinatal phase and can adversely impact on both mother and child. Despite this, research into anxiety has received less attention than depression. The National Institute for Health and Care Excellence guidance on perinatal mental health has identified PNA as a research priority.AimTo explore the perspectives and experiences of healthcare professionals (HCPs) in the identification and management of PNA.Design and settingThis was a qualitative study in primary and secondary care set in the West Midlands from February 2017 to December 2017.MethodSemi-structured interviews (n = 23) with a range of HCPs. Iterative approach to data generation and analysis, using principles of constant comparison. Patient and Public Involvement and Engagement (PPIE) group was involved throughout the study.ResultsTwenty-three HCPs interviewed: 10 GPs, seven midwives, five health visitors, and one obstetrician. Four themes were uncovered: PNA as an ‘unfamiliar concept’; reliance on clinical intuition and not clinical tools; fragmentation of care; and opportunities to improve care.ConclusionAwareness and understanding of PNA among HCPs is variable, with debate over what is ‘normal’ anxiety in pregnancy. HCPs suggested that PNA can be challenging to identify, with mixed views on the use and value of case-finding tools. Opportunistic identification was noted to be significant to aid diagnosis. Care for women diagnosed with PNA was reported to be fragmented and interprofessional communication poor. Potential solutions to improve care were identified.

scholarly journals Peripheral circulation miRNA expression of pediatric brain tumors and its relation to tumor miRNA expression levels

2020 ◽  
Vol 26 (2) ◽  
pp. 136-144 ◽  
Author(s):  
Markus Bookland ◽  
Eileen Gillan ◽  
Xianyuan Song ◽  
Antonina Kolmakova
Keyword(s):  
Brain Tumor ◽  
Brain Tumors ◽  
Mirna Expression ◽  
Tumor Tissue ◽  
Pediatric Brain Tumor ◽  
Pediatric Brain Tumors ◽  
Tumor Patients ◽  
Tumor Patient ◽  
Serum Mirna ◽  
Pediatric Brain

OBJECTIVEMicro RNAs (miRNAs) in peripheral biofluids (e.g., blood, saliva, urine) have been investigated as potential sources of diagnostic and prognostic information for a variety of tumor types, including pediatric brain tumors. While significant predictive associations have been identified between unique serum miRNA concentrations and some pediatric brain tumors, it is unclear whether serum miRNA abnormalities in pediatric brain tumor patients are representative of miRNA alterations in the tumor tissue compartment or whether they represent host tissue reactions to the presence of a brain tumor. The authors sought to identify whether serum miRNA changes in pediatric brain tumor patient sera could be explained by miRNA alterations within their tumors.METHODSMatched serum and tissue samples were taken from a cohort of pediatric brain tumor patients (juvenile pilocytic astrocytoma [JPA] = 3, medulloblastoma = 4, ependymoma = 3), and unmatched control samples (n = 5) were acquired from control pediatric patients without oncological diagnoses. Extracted RNAs were tested within an array of 84 miRNAs previously noted to be relevant in a variety of brain tumors.RESULTSmiR-26a-5p correlated strongly in JPA patients within both the serum and tumor tissue samples (R2 = 0.951, p = 0.046), and serum levels were highly predictive of JPA (area under the curve = 0.751, p = 0.027). No other miRNAs that were significantly correlated between biological compartments were significantly associated with brain tumor type. In total, 15 of 84 tested miRNAs in JPA patients, 14 of 84 tested miRNAs in ependymoma patients, and 4 of 84 tested miRNAs in medulloblastoma patients were significantly, positively correlated between serum and tumor tissue compartments (R2 > 0.950, p < 0.05).CONCLUSIONSThe majority of miRNA changes in pediatric brain tumor patient sera that are significantly associated with the presence of a brain tumor do not correlate with brain tumor miRNA expression levels. This suggests that peripheral miRNA changes within pediatric brain tumor patients likely derive from tissues other than the tumors themselves.

Care of the caregiver: Improving caregiver outcomes across the disease trajectory.

2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 82-82
Author(s):  
Margaretta Page ◽  
Idonah M. Molina ◽  
Judy Patt ◽  
Susan Marina Chang
Keyword(s):  
Brain Tumor ◽  
High Risk ◽  
Emotional Support ◽  
Health Care Team ◽  
Tumor Patients ◽  
Tumor Patient ◽  
Levels Of Care ◽  
Additional Layer ◽  
Wide Range ◽  
The Right

82 Background: Caregivers are essential members of the health team, often assuming diverse primary care roles for the cancer patient. Caregiver needs vary across the trajectory of illness and range from informational needs to emotional support to assistance with accessing resources. The needs of caregivers of brain tumor patients are complex not only because of the life threatening nature of the illness but also because of the wide range of neurological and cognitive deficits patients experience, a known risk factor for added stress to the caregiver. To address these challenges and improve caregiver outcomes, the Neuro Oncology Division at UCSF developed a program to provide an additional layer of care that includes information and support to caregivers of brain tumor patients across the trajectory of illness, from diagnosis to death. Methods: The program consists of a medical director and a dedicated nurse practitioner, social worker and coordinator, all focused on the caregiver of the brain tumor patient. The goals of the program are to provide information needed to assist with disease and symptom management, effective communication with the health care team, maximization of use of available resources, and to provide emotional support. Three groups of caregivers were targeted: caregivers of all new patients with a focus on newly diagnosed glioblastoma and caregivers of patients deemed at “high risk,” either identified by the provider, or because of the phase in the illness trajectory. Results: Since June 2013, 13 caregivers reported no needs for the first 4 months from diagnosis. 13 caregivers received care, with over half reporting concerns regarding financial issues and disability as well as need for emotional support around adjusting to the diagnosis, role changes, and care demands. In addition, varying levels of care have been provided to 70 caregivers of patients identified at “high risk” for distress due to disease progression or when transitioning to hospice. Conclusions: This program provides care to caregivers of brain tumor patients at specific time points to improve caregiver outcomes. Challenges include tailoring the information at the right time as well as measuring outcomes with minimal extra burden to the caregiver.

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