NCOG-49. UNMET NEEDS AND WISH FOR SUPPORT OF FAMILY CAREGIVERS OF PRIMARY BRAIN TUMOUR PATIENTS

2021 ◽  
Vol 23 (Supplement_6) ◽  
pp. vi162-vi163
Author(s):  
Lucy Pointon ◽  
Robin Grant ◽  
Sharon Peoples ◽  
Sara Erridge ◽  
Paula Sherwood ◽  
...  

Abstract BACKGROUND Most primary brain tumour patients rely on informal caregivers (i.e. family members or friends) for practical and emotional support. While caregiving can be rewarding, it may lead to significant burden. To develop support it is therefore vital to distinguish between unmet needs, and an actual wish for support. Study aims: 1) identify the presence and magnitude of caregivers’ unmet needs; 2) examine associations between unmet needs and wish for support; 3) evaluate perceived usefulness of caregiver needs screening in clinical practice. METHODS Family caregivers of primary brain tumour patients were recruited and asked to complete an adapted version of the Caregiver Needs Screen (CNS) which consisted of 33 common issues in neuro-oncology caregiving (scale 0-10), and the wish for support (yes/no). Participants ranked (0-7) their experience of using the CNS with a study-specific evaluation questionnaire. Descriptive and correlational analyses were applied. RESULTS Caregivers (N=79) reported between 1-33 unmet needs (M=17.20, sd=7.98) but did not always wish for support (range 0-28, M=4.71, sd=6.63). Most distressing items were changes in patient’s memory or concentration (M=5.75, SD=3.29), followed closely by patient’s fatigue (M=5.58, SD= 3.43), and recognising signs of disease progression (M=5.23, SD= 3.15). A weak correlation was found between the total number of unmet needs and wish for support (r=0.296, p=0.014). Caregivers most often wished for support with recognising disease progression (N=24, 34.78%), and least often with managing spiritual issues (N=0, 0%). Caregivers evaluated the CNS tool positively (mean item scores ranging 4.19-6.21 out of 7). CONCLUSIONS Family caregivers experience distress resulting from many neuro-oncology specific needs, but this is not directly related to a wish for support. Caregiver needs screening could be useful to tailor support to suit caregivers’ preferences in clinical practice.

2021 ◽  
Vol 23 (Supplement_2) ◽  
pp. ii31-ii32
Author(s):  
L Pointon ◽  
R Grant ◽  
S Peoples ◽  
S Erridge ◽  
P Sherwood ◽  
...  

Abstract BACKGROUND Most primary brain tumour patients rely on informal caregivers (i.e. family members or friends) for practical and emotional support. While caregiving can be rewarding, it also commonly leads to significant burden. In developing support for caregivers, it is vital to distinguish between caregivers’ unmet needs, and their actual wish for support to resolve unmet needs. We aimed to 1) identify the presence and magnitude of unmet needs; 2) examine associations between unmet needs and desire for support; 3) evaluate perceived usefulness of caregiver needs screening in clinical practice. MATERIAL AND METHODS Family caregivers of patients with primary brain tumours were recruited and asked to complete an adapted version of the Caregiver Needs Screen (CNS). This covered the level of distress resulting from 33 common issues in neuro-oncology caregiving (scale 0–10), and wish for information or support for any issue (yes/no). In addition, participants were asked to rank (0–7) their experience of using the CNS based on items covering ‘ease of us’, ‘usefulness’ and ‘satisfaction’. Descriptive and correlational analyses were applied. RESULTS Caregivers (N=79) reported between 1–33 unmet needs (M=17.20, sd=7.98) but did not always wish for support for each need (range 0–28, M=4.71, sd=6.63). Most distressing items were patient’s fatigue (M=5.58), recognising signs of disease progression (M=5.23), changes in patients’ thinking or behaviour (M=5.04), patient distress or sadness (M=4.68), and changes in caregivers’ own emotional health (M=4.44). A weak correlation was found between the total number of unmet needs and the desire for support (r=0.296, p=0.014). Caregivers most often desired support with recognising disease progression (N=24), managing medications and side-effects (N=18), and least often with managing spiritual issues (N=0), communication with (grand)children (N=2) and communication with family members and friends (N=3). Caregivers evaluated the CNS tool positively (mean item scores ranging 4.19–6.21 out of 7). CONCLUSION Family caregivers of brain tumour patients experience distress resulting from many neuro-oncology specific needs, but this is not directly related to a wish for support or information. Caregiver needs screening could be useful to tailor support or information to suit caregivers’ preferences in clinical practice.


2018 ◽  
Author(s):  
Murtaza Kaderi ◽  
Mohsin Ali ◽  
Alfiya Ali ◽  
Tasneem Kaderi

The goals of periodontal therapy are to arrest of periodontal disease progression and to attain the regeneration of the periodontal apparatus. Osseous grafting and Guided tissue regeneration (GTR) are the two techniques with the most extensive documentation of periodontal regeneration. However, these techniques offer limited potential towards regenerating the periodontal tissues. Recent surgical procedures and application of newer materials aim at greater and more predictable regeneration with the concept of tissue engineering for enhanced periodontal regeneration and functional attachment have been developed, analyzed, and employed in clinical practice


2020 ◽  
Vol 32 (S1) ◽  
pp. 127-127
Author(s):  
Fatima Urzal ◽  
Ana Quintão ◽  
Catarina Santos ◽  
Nuno Moura ◽  
Ana Banazol ◽  
...  

IntroductionAs in other countries, Portuguese family caregivers have unmet needs regarding information and distress. START (STrAtegies for RelaTives) is a manual-based coping intervention for families of people with dementia, including coping strategies and stress-management components, by Livingston and colleagues (https://www.ucl.ac.uk/psychiatry/research/mental-health-older-people/projects/start). In the UK, START has been clinically effective, immediately and continuing even after 6-years, without increasing costs. Clinical training and supervision ensures treatment fidelity. In Portugal, these kind of interventions are less available and, when provided, are mostly supportive and fail to address coping strategies. Paradoxically, recruitment may also prove challenging.ObjectivesWe describe the development of the Portuguese translation of START, incorporating guidance from the UK team, and a pilot study of delivery to family caregivers of people with dementia. We will also discuss the challenges of recruiting participants and delivering the intervention.MethodWe translated the START intervention and recruited family caregivers from neurology and psychiatry outpatients, in a central hospital in Lisbon. Our baseline assessment included the Hospital Anxiety and Depression Scale and the Zarit Burden Interview. The pilot is still ongoing at time of submitting, so we focus on recruitment, baseline assessments and process issues.ResultsDuring a three-month period, we recruited six caregivers. Five were primary caregivers (spouses or adult children) who had been caring for their relatives for 2 up to 10 years. Two caregivers met the international cutoff for clinically relevant affective disorder . The most frequent motivators for taking part were learning to communicate with their relatives and increasing knowledge to build community resources. Overall, the subjective impression of the therapist in charge is that the intervention seems acceptable and promising.Discussion/ConclusionsThis pilot study will eventually lead to an improved version of the Portuguese version of the START manual. So far, the intervention seems appropriate for selected caregivers in Portugal. However, response to striking unmet needs, particularly basic home support, may need to precede interventions like START. We look forward to concluding the intervention study and analyzing the implementation challenges, as a basis to inform a wider-scale trial.


2021 ◽  
Vol 108 (Supplement_2) ◽  
Author(s):  
A Vassiliou ◽  
K Alavian ◽  
M Tsujishita ◽  
H Bae

Abstract Introduction Primary brain tumours originate from cells within the brain. The commonest malignant types are gliomas which are graded from I-IV. Emerging evidence has elucidated the function of the mitochondrially localised B-cell lymphoma-extra-large (Bcl-xL) protein, and its promotion of tumour progression-associated properties. Our lab has previously established that Bcl-xL-overexpressing neurons increase metabolic efficiency by producing more adenosine triphosphate and consuming less oxygen, which we assumed, fuels cancer cells to proliferate. Method We quantified the subcellular expression patterns of Bcl-xL in primary brain tumour samples through immunohistochemistry on a brain tissue microarray containing 16 glioma cases from Grades II-IV. We used antibodies against Bcl-xL, heat shock protein 60 for mitochondrial detection and proliferating cell nuclear antigen for cancerous cell detection. Results Bcl-xL is overexpressed in cancerous cells of Grade IV gliomas and is significantly greater than cancerous cells of Grade III and Grade II gliomas. Cancerous cells express higher levels of Bcl-xL than non-cancerous cells in all grades of glioma. Conclusions Bcl-xL-overexpressing neurons exhibit enhanced metabolic efficiency, contributing to increased proliferation rates. Future research should focus on the characterisation of ATP levels and oxygen consumption in glioma cells. Conclusively, pharmacological inhibition of Bcl-xL will suppress the proliferation rate in gliomas and cease cancer cell growth.


2021 ◽  
Vol 11 (1) ◽  
Author(s):  
Vanitha Arumugam ◽  
Joy C. MacDermid ◽  
Dave Walton ◽  
Ruby Grewal

Abstract Introduction PAIN+ and PubMed are two electronic databases with two different mechanisms of evidence retrieval. PubMed is used to “Pull” evidence where clinicians can enter search terms to find answers while PAIN+ is a newly developed evidence repository where along with “Pull” service there is a “Push” service that alerts users about new research and the associated quality ratings, based on the individual preferences for content and altering criteria. Purpose The primary purpose of the study was to compare yield and usefulness of PubMed and PAIN+ in retrieving evidence to address clinical research questions on pain management. The secondary purpose of the study was to identify what search terms and methods were used by clinicians to target pain research. Study design Two-phase double blinded randomized crossover trial. Methods Clinicians (n = 76) who were exposed to PAIN+ for at least 1 year took part in this study. Participants were required to search for evidence 2 clinical question scenarios independently. The first clinical question was provided to all participants and thus, was multi-disciplinary. Participants were randomly assigned to search for evidence on their clinical question using either PAIN+ or PubMed through the electronic interface. Upon completion of the search with one search engine, they were crossed over to the other search engine. A similar process was done for a second scenario that was discipline-specific. The yield was calculated using number of retrieved articles presented to participants and usefulness was evaluated using a series of Likert scale questions embedded in the testing. Results Multidisciplinary scenario: Overall, the participants had an overall one-page yield of 715 articles for PAIN+ and 1135 articles for PubMed. The topmost article retrieved by PAIN+ was rated as more useful (p = 0.001). While, the topmost article retrieved by PubMed was rated as consistent with current clinical practice (p = 0.02). PubMed (48%) was preferred over PAIN+ (39%) to perform multidisciplinary search (p = 0.02). Discipline specific scenario: The participants had an overall one-page yield of 1046 articles for PAIN+ and 1398 articles for PubMed. The topmost article retrieved by PAIN+ was rated as more useful (p = 0.001) and consistent with current clinical practice (p = 0.02) than the articles retrieved by PubMed. PAIN+ (52%) was preferred over PubMed (29%) to perform discipline specific search. Conclusion Clinicians from different disciplines find both PAIN+ and PubMed useful for retrieving research studies to address clinical questions about pain management. Greater preferences and perceived usefulness of the top 3 retrieved papers was observed for PAIN+, but other dimensions of usefulness did not consistently favor either search engine. Trial registration Registered with ClinicalTrials.gov Identifier: NCT01348802, Date: May 5, 2011.


2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 690-690
Author(s):  
Erin Kent

Abstract In 2020, ~1.8 million Americans are expected to be newly diagnosed with cancer, with approximately 70% of cases diagnosed over the age of 65. Cancer can have a ripple effect, impacting not just patients themselves, but their family caregivers. This presentation will provide an overview of the estimates of the number of family caregivers caring for individuals with cancer in the US, focusing on older patients, from several population-based data sources: Caregiving in the US 2020, the Health Information National Trends Survey (HINTS, 2017-2019), the Behavioral Risk Factors Surveillance System (BRFSS, 2015-2019), and the National Health and Aging Trends (NHATS) Survey. The presentation will compare features of the data sources to give a comprehensive picture of the state of cancer caregiving. In addition, the presentation will highlight what is known about the experiences of cancer caregivers, including caregiving characteristics, burden, unmet needs, and ideas for improving support for family caregivers.


Nursing ◽  
2007 ◽  
Vol 37 (1) ◽  
pp. 36-42 ◽  
Author(s):  
RACHEL L. PALMIERI

Author(s):  
Jing Li ◽  
Susan S. Smyth ◽  
Jessica Miller Clouser ◽  
Colleen A. McMullen ◽  
Vedant Gupta ◽  
...  

Background and Objectives: Overuse and inappropriate use of testing and hospital admission are common in syncope evaluation and management. Though guidelines are available to optimize syncope care, study suggested that the current clinical guidelines have not significantly impacted resource utilization surrounding emergency department (ED) evaluation of syncope. Matching implementation strategies to barriers and facilitators and tailoring strategies to local context hold significant promise for a successful implementation of clinical practice guideline (CPG). Our team applied implementation science principles to develop a stakeholder-based implementation strategy. Methods and Materials: We partnered with patients, family caregivers, frontline clinicians and staff, and health system administrators at four health systems to conduct quantitative surveys and qualitative interviews for context assessment. The identification of implementation strategies was done by applying the CFIR-ERIC Implementation Strategy Matching Tool and soliciting stakeholders’ inputs. We then co-designed with patients and frontline teams, developed and tested specific strategies. Results: 114 clinicians completed surveys and 32 clinicians and stake-holders participated in interviews. Results from the surveys and interview indicated low awareness of syncope guidelines, and communication challenges with patients, lack of CPG protocol integration into ED workflows, and organizational process to change were recognized as major barriers. Thirty-one patients and their family caregivers participated in interviews and ex-pressed their expectations: clarity regarding their diagnosis, context surrounding care plan and diagnostic testing, and a desire to feel cared about. After identifying change methods to address those barriers, the multilevel, multicomponent implementation strategy, MISSION, included pa-tient educational materials, mentored implementation, academic detailing, Syncope Optimal Care Pathway and corresponding Mobile App, and Lean quality improvement methods. The pilot of MISSION demonstrated feasibility, acceptability and initial success on appropriate testing. Con-clusions: Effect multifaceted implementation strategies that target individuals, teams, and healthcare systems can be employed to plan successful implementation and promote adherence to syncope CPGs.


2020 ◽  
Vol 22 (1) ◽  
pp. 53-59
Author(s):  
Elena I. Kovalenko ◽  
Elena V. Artamonova ◽  
Elena V. Karabina ◽  
Irina I. Andreiashkina ◽  
Ekaterina A. Prokof’eva ◽  
...  

The article presents the experience of 19 Russian medical institutions on the use of eribulin in combination with trastuzumab in various treatment lines of metastatic HER2+ breast cancer in routine clinical practice. Aim. The main objective of this retrospective observational study was to evaluate the efficacy and tolerability of eribulin and trastuzumab combo in HER2+ breast cancer patients pretreated with anthracyclines and taxanes. The analysis included 60 patients who received at least 2 cycles of eribulin in combination with trastuzumab. 2 patients (3.3%) received treatment as the 1st line, as the 2nd 14 (23.3%), as the 3rd 16 (26.7%), and as the 4th and more 28 (46.7%). Materials and methods. Complete response was achieved in 2 (3.3%) patients, partial response in 9 (15%), stable disease in 33 (55%), stabilization for more than 6 months in 11 (18.3%), disease progression was detected in 16 (26.7%) patients. The objective response rate was 18.3% in the whole group, the clinical benefit rate 36.7%. Results. The objective response rate in the group of the luminal subtype (ER/PR+HER2+) was 26.9%, in HER2-overexpressed subtype (ER-PR-HER2+) 8.8% and 64.7%, respectively, disease progression was recorded 2.3 times more often 35.3% versus 15.5% in the luminal subtype group. The median progression-free survival in patients with HER2+ breast cancer was 4.95 months (95% confidence interval CI 3.048.29 months), in luminal subtype 6.38 months (95% CI 3.338.54 months), in non-luminal 4.44 months (95% CI 2.47.96 months); p=0.306. The treatment was well tolerated, the spectrum of adverse events corresponded to the eribulin toxicity profile. Conclusions. The uniqueness of this study lies in the fact that on a large clinical material from the standpoint of real clinical practice, a very promising treatment regimen that is not used routinely in a number of countries has been studied, its effectiveness and satisfactory tolerance have been confirmed.


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