QOLP-06. THE CHALLENGE OF FACING A NEW MALIGNANT GLIOMA DIAGNOSIS: PATIENT EXPERIENCES LEARNING ABOUT THEIR ILLNESS AND COMMUNICATING WITH THEIR PROVIDERS IN THE NEURO-ONCOLOGY CLINIC

2021 ◽  
Vol 23 (Supplement_6) ◽  
pp. vi183-vi184
Author(s):  
Michelle Mesa ◽  
Emilia Kaslow-Zieve ◽  
Lara Traeger ◽  
Jennifer Temel ◽  
Deborah Forst

Abstract BACKGROUND Patients with newly diagnosed malignant gliomas (MG) face the sudden and unexpected news that they have a terminal neurological illness. However, little is known about these patients’ experiences learning about their illness and communicating with their oncology providers. METHODS We conducted semi-structured interviews with patients with MG who had recently completed chemoradiation, to explore patient-clinician communication and evaluate how patients process information about their diagnosis. We excluded patients with marked cognitive dysfunction, with eligible patients required to have a Mini-Mental Status Exam score of 24/30 or greater. We terminated enrollment once we reached thematic saturation, after a total of 9 patient interviews. We thematically analyzed qualitative data to describe patterns common to the patients’ experiences. RESULTS Most patients were male (6/9, 66.7%), with median age of 55 years (range 26-72) and had a diagnosis of glioblastoma (6/9, 66.7%). The majority of patients described a positive experience communicating with their providers, noting that information was delivered clearly, and visits were not rushed. Despite this, patients found it difficult to absorb and process the large volume of new information, particularly in the setting of their shock and dismay about the diagnosis and their ongoing neurological deficits. Emergent themes included concerns about the impact of the disease on their loved ones, struggles in coping with uncertainty, and worries about preserving their quality of life and functioning. Additionally, patients described their efforts to balance their knowledge about their poor prognosis with their desire to maintain hope, with many patients expressing a goal to “beat the odds” or exceed expectations with respect to their survival. CONCLUSION Although patients with newly diagnosed MG describe effective communication with their providers, they face many challenges coping with their terminal diagnosis. Supportive interventions aimed at this population are needed.

2020 ◽  
pp. 1-10 ◽  
Author(s):  
Amar S. Shah ◽  
Peter T. Sylvester ◽  
Alexander T. Yahanda ◽  
Ananth K. Vellimana ◽  
Gavin P. Dunn ◽  
...  

OBJECTIVEIntraoperative MRI (iMRI) is used in the surgical treatment of glioblastoma, with uncertain effects on outcomes. The authors evaluated the impact of iMRI on extent of resection (EOR) and overall survival (OS) while controlling for other known and suspected predictors.METHODSA multicenter retrospective cohort of 640 adult patients with newly diagnosed supratentorial glioblastoma who underwent resection was evaluated. iMRI was performed in 332/640 cases (51.9%). Reviews of MRI features and tumor volumetric analysis were performed on a subsample of cases (n = 286; 110 non-iMRI, 176 iMRI) from a single institution.RESULTSThe median age was 60.0 years (mean 58.5 years, range 20.5–86.3 years). The median OS was 17.0 months (95% CI 15.6–18.4 months). Gross-total resection (GTR) was achieved in 403/640 cases (63.0%). Kaplan-Meier analysis of 286 cases with volumetric analysis for EOR (grouped into 100%, 95%–99%, 80%–94%, and 50%–79%) showed longer OS for 100% EOR compared to all other groups (p < 0.01). Additional resection after iMRI was performed in 104/122 cases (85.2%) with initial subtotal resection (STR), leading to a 6.3% mean increase in EOR and a 2.2-cm3 mean decrease in tumor volume. For iMRI cases with volumetric analysis, the GTR rate increased from 54/176 (30.7%) on iMRI to 126/176 (71.5%) postoperatively. The EOR was significantly higher in the iMRI group for intended GTR and STR groups (p = 0.02 and p < 0.01, respectively). Predictors of GTR on multivariate logistic regression included iMRI use and intended GTR. Predictors of shorter OS on multivariate Cox regression included older age, STR, isocitrate dehydrogenase 1 (IDH1) wild type, no O6-methylguanine DNA methyltransferase (MGMT) methylation, and no Stupp therapy. iMRI was a significant predictor of OS on univariate (HR 0.82, 95% CI 0.69–0.98; p = 0.03) but not multivariate analyses. Use of iMRI was not associated with an increased rate of new permanent neurological deficits.CONCLUSIONSGTR increased OS for patients with newly diagnosed glioblastoma after adjusting for other prognostic factors. iMRI increased EOR and GTR rate and was a significant predictor of GTR on multivariate analysis; however, iMRI was not an independent predictor of OS. Additional supporting evidence is needed to determine the clinical benefit of iMRI in the management of glioblastoma.


2020 ◽  
Vol 22 (Supplement_2) ◽  
pp. ii207-ii207
Author(s):  
Shawn Hervey-Jumper ◽  
Annette Molinaro ◽  
Cecilia Dalle Ore ◽  
Desmond Brown ◽  
Yalan Zhang ◽  
...  

Abstract BACKGROUND The prognostic importance of maximal resection of contrast enhancing and non-contrast enhancing disease has been established. Nonetheless, glioblastomas exist within the framework of complex neural circuitry serving cognition, movement, and behavior consequential leading to neurological impairments. The prognostic importance of neurological impairments on survival remains poorly understood. METHODS This is a retrospective, single cohort study from UCSF including 316 eligible patients diagnosed over 20 years with 9.6 years of follow-up. All patients underwent surgical resection for newly diagnosed glioblastoma for whom survival, molecular, preoperative and postoperative MRI images, and clinical data were available. All patients had chemoradiation treated IDH-wild-type glioblastoma with available preoperative and 1-month post-surgical resection neurological outcomes. We employed survival models and recursive partitioning (RPA) to investigate multivariate relationships of overall survival (OS). RESULTS Preoperative neurological impairments were present in 75.6% (n= 239) and new post resection impairments were identified in 37.3% (n=117). Univariate analysis confirmed that new postoperative cognitive impairment [HR 7.91, 95% CI 2.47-25.33] and hemiplegia [HR 3.38, 95% CI 0.83-13.67] (not hemiparesis) impact OS. Risk stratified grouping by RPA demonstrated that gross total resection of contrast enhancing tumor in patients with no new postoperative neurological impairments confers the longest OS (median OS 27.1 months 95%CI 21.5-33.7). Patients with any residual tumor volume after surgery but no new neurological deficits experience a similar survival to younger patients (under 65) with 1 or more new postoperative neurological deficits (median OS 16.6 months 95%CI 15.2-19.2). Shortest OS is identified in patients with any volume of residual tumor plus 1 or more new postoperative neurological deficits and age over 65 (median OS 11.4 months, 95%CI 9.3-13.5). CONCLUSIONS This study confirms that new postoperative neurological impairments impact overall survival in patients with chemoradiation treated IDH-wild-type glioblastoma.


2018 ◽  
Vol 8 (2) ◽  
pp. 51-74
Author(s):  
Fonteh Athanasius Amungwa

This paper examines the impact of community education and challenges facing Centres for Education and Community Action as a rural development strategy in Cameroon. The study was conducted in the North-West Region of Cameroon, employing field observations, semi-structured interviews with key informants using a convenient sampling technique and through elaborate review of documents. These research instruments were blended into what is termed triangulation and the data collected was analysed descriptively. The main focus of qualitative analysis is to understand the ways in which people act and the accounts that people give for their actions. This paper posits that extreme dependence on the provision of Western formal education cannot solve the problems of a rapidly changing society like Cameroon, which is facing a long-term economic crisis and persistent unemployment issues of graduates. Consequently, education should be redefined in the context of the prevailing economic crisis to make it responsive to the aspirations of rural communities. Findings showed that community education had contributed towards rural development immensely but has suffered many challenges due to neglect of the field in the policy agenda. This paper recommends the integration of community education with formal education to facilitate group and community betterment in particular and rural transformation in general.


2018 ◽  
Vol 68 (suppl 1) ◽  
pp. bjgp18X696929
Author(s):  
Jill Mitchell

BackgroundThere is an emerging debate that general practice in its current format is out-dated and there is a requirement to move to a federated model of provision where groups of Practices come together. The emergence of federations has developed over the past 5 years but the factors that influence how federations develop and the impact of this new model is an under researched area.AimThe study explored the rationale around why a group of independent GP practices opted to pursue an alternative business venture and the benefits that this strategy offered.MethodA single organisational case study of a federation in the North of England was conducted between 2011–2016. Mixed methods data collection included individual and group semi-structured interviews and quantitative surveys.ResultsFederations promote collaborative working, relying on strategic coherence of multiple individual GP practices through a shared vision and common purpose. Findings revealed many complexities in implementing a common strategy across multiple independent businesses. The ability of the federation to gain legitimacy was two dimensional – externally and internally. The venture had mixed successes, but their approach to quality improvement proved innovative and demonstrated outcomes on a population basis. The study identified significant pressures that practices were experiencing and the need to seek alternative ways of working but there was no shared vision or inclination to relinquish individual practice autonomy.ConclusionOrganisational development support is critical to reform General Practice. Whether central funding through the GP Five Year Forward View will achieve the scale of change required is yet to be evidenced.


2019 ◽  
Vol 16 (1-2) ◽  
pp. 1-34
Author(s):  
R. Varisa Patraporn

Khmer Girl’s in Action is a nonprofit that successfully utilizes community-based participatory research (CBPR) with university partners to create social change for youth in Long Beach, CA. Based on semi-structured interviews and content analysis of news articles, I explore the impact and sustainability of this research work and the research partnerships. Findings highlight impacts such as youth empowerment, heightened awareness around community needs, policy change, and CBPR curriculum improvements in the field as impacts. Sustainability requires integrating research into program funding, utilizing a tailored training curriculum, building on community members prior relationships, and selecting partners that share common goals, levels of commitment, and flexibility. As funders demand more data to justify community needs, understanding more examples of such work in the Asian American community will be useful for informing future partnerships.


2020 ◽  
Vol 9 (17) ◽  
pp. 1195-1204
Author(s):  
Florence D Mowlem ◽  
Brad Sanderson ◽  
Jill V Platko ◽  
Bill Byrom

Aim: To understand the impact of anticancer treatment on oncology patients’ ability to use electronic solutions for completing patient-reported outcomes (ePRO). Materials & methods: Semi-structured interviews were conducted with seven individuals who had experienced a cancer diagnosis and treatment. Results: Participants reported that the following would impact the ability to interact with an ePRO solution: peripheral neuropathy of the hands (4/7), fatigue and/or concentration and memory issues (6/7), where they are in a treatment cycle (5/7). Approaches to improve usability included: larger, well-spaced buttons to deal with finger numbness, the ability to pause a survey and complete at a later point and presenting the recall period with every question to reduce reliance on memory. Conclusion: Symptoms associated with cancers and anticancer treatments can impact the use of technologies. The recommendations for optimizing the electronic implementation of patient-reported outcome instruments in this population provides the potential to improve data quality in oncology trials and places patient needs at the forefront to ensure ‘fit-for-purpose’ solutions.


2019 ◽  
Vol 11 (9) ◽  
pp. 2625 ◽  
Author(s):  
Jolita Vveinhardt ◽  
Rita Bendaraviciene ◽  
Ingrida Vinickyte

Volunteering, the volunteer’s intercultural competence and emotional intelligence contribute to intercultural education and sustainability in various societies of today. The aim of this study was to analyse the impact of emotional intelligence and intercultural competence on work productivity of volunteers. The first part of the article substantiates theoretical associations between emotional intelligence, intercultural competence and work productivity. Based on theoretical insights, empirical research methodology was prepared, which consisted of four categories divided into sub-categories that provided the structure of the question groups. The empirical research involved seven informants working in Lithuania, who welcomed volunteers from abroad. The research was conducted using the method of semi-structured interviews. The conclusions present a systematic perspective towards the role of emotional intelligence in the intercultural competence and work productivity of volunteers. In this context, emotional intelligence works as a mediating factor. The contributing role of volunteer-receiving organisations in the development of the volunteers’ emotional intelligence is also highlighted.


2020 ◽  
Vol 13 (1) ◽  
pp. 56
Author(s):  
Tino Herden

Purpose: Analytics research is increasingly divided by the domains Analytics is applied to. Literature offers little understanding whether aspects such as success factors, barriers and management of Analytics must be investigated domain-specific, while the execution of Analytics initiatives is similar across domains and similar issues occur. This article investigates characteristics of the execution of Analytics initiatives that are distinct in domains and can guide future research collaboration and focus. The research was conducted on the example of Logistics and Supply Chain Management and the respective domain-specific Analytics subfield of Supply Chain Analytics. The field of Logistics and Supply Chain Management has been recognized as early adopter of Analytics but has retracted to a midfield position comparing different domains.Design/methodology/approach: This research uses Grounded Theory based on 12 semi-structured Interviews creating a map of domain characteristics based of the paradigm scheme of Strauss and Corbin.Findings: A total of 34 characteristics of Analytics initiatives that distinguish domains in the execution of initiatives were identified, which are mapped and explained. As a blueprint for further research, the domain-specifics of Logistics and Supply Chain Management are presented and discussed.Originality/value: The results of this research stimulates cross domain research on Analytics issues and prompt research on the identified characteristics with broader understanding of the impact on Analytics initiatives. The also describe the status-quo of Analytics. Further, results help managers control the environment of initiatives and design more successful initiatives.


2021 ◽  
Vol 13 (12) ◽  
pp. 6581
Author(s):  
Jooyoung Hwang ◽  
Anita Eves ◽  
Jason L. Stienmetz

Travellers have high standards and regard restaurants as important travel attributes. In the tourism and hospitality industry, the use of developed tools (e.g., smartphones and location-based tablets) has been popularised as a way for travellers to easily search for information and to book venues. Qualitative research using semi-structured interviews based on the face-to-face approach was adopted for this study to examine how consumers’ restaurant selection processes are performed with the utilisation of social media on smartphones. Then, thematic analysis was adopted. The findings of this research show that the adoption of social media on smartphones is positively related with consumers’ gratification. More specifically, when consumers regard that process, content and social gratification are satisfied, their intention to adopt social media is fulfilled. It is suggested by this study that consumers’ restaurant decision-making process needs to be understood, as each stage of the decision-making process is not independent; all the stages of the restaurant selection process are organically connected and influence one another.


Multilingua ◽  
2020 ◽  
Vol 39 (5) ◽  
pp. 517-528
Author(s):  
Jie Zhang ◽  
Yuqin Wu

AbstractTranslation is an important means of enabling access to information in an emergency response. Increasingly, volunteer translators have been using social media platforms to self-organize and carry out urgent translation tasks that effectively complement official disaster relief efforts. However, the role of crowdsourced translations and the capacity of volunteer translators in reducing the impact of disasters remain underestimated and therefore understudied. Based on semi-structured interviews with five volunteer translators and online observation of their translation practices, this study investigates the role of a volunteer-driven crowdsourced translation effort in facilitating the donation and procurement of medical supplies between Wuhan and the world. By addressing the real challenges of urgent crisis communication in Wuhan in the early stages of the pandemic, this study draws attention to the need to integrate information and communication technologies with multilingual resources for disaster relief. In addition, it calls for the inclusion of multilingual logistics in national emergency preparation, response and recovery plans.


Sign in / Sign up

Export Citation Format

Share Document