Defining unmet clinical need across the pathway of brain tumor care: a patient and carer perspective.
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ABSTRACT:
SUBMITTER: Sage W
PROVIDER: S-EPMC6433107 | biostudies-literature | 2019
REPOSITORIES: biostudies-literature
Publications
Defining unmet clinical need across the pathway of brain tumor care: a patient and carer perspective.
Sage William W Fernández-Méndez Rocío R Crofton Anna A Gifford Michael J MJ Bannykh Alexey A Chrysaphinis Constantinos C Tingley Emma E Bulbeck Helen H Brahmbhatt Mita M Pickard John D JD Walter Fiona M FM Brodbelt Andrew A Price Stephen J SJ Joannides Alexis J AJ
Cancer management and research 20190319
<h4>Objective</h4>The aim of this study was to determine the experience of patients with brain tumors and their carers across distinct parts of their treatment pathway and identify their views on potential service gaps in need of addressing.<h4>Methods</h4>A structured survey was administered at patient workshops across the UK and online through a charity newsletter. Answers to closed questions were analyzed using descriptive statistics, and open questions were examined using techniques of induc ...[more]
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Project description:The COVID-19 pandemic has dramatically impacted cancer care worldwide. Disruptions have been seen across all facets of care. While the long-term impact of COVID-19 remains unclear, the immediate impacts on patients, their carers and the healthcare workforce are increasingly evident. This study describes disruptions and reorganisation of cancer services in Australia since the onset of COVID-19, from the perspectives of people affected by cancer and healthcare workers. Two separate online cross-sectional surveys were completed by: a) cancer patients, survivors, carers, family members or friends (n = 852) and b) healthcare workers (n = 150). Descriptive analyses of quantitative survey data were conducted, followed by inductive thematic content analyses of qualitative survey responses relating to cancer care disruption and perceptions of telehealth. Overall, 42% of cancer patients and survivors reported experiencing some level of care disruption. A further 43% of healthcare workers reported atypical delays in delivering cancer care, and 50% agreed that patient access to research and clinical trials had been reduced. Almost three quarters (73%) of patients and carers reported using telehealth following the onset of COVID-19, with high overall satisfaction. However, gaps were identified in provision of psychological support and 20% of participants reported that they were unlikely to use telehealth again. The reorganisation of cancer care increased the psychological and practical burden on carers, with hospital visitation restrictions and appointment changes reducing their ability to provide essential support. COVID-19 has exacerbated a stressful and uncertain time for people affected by cancer and healthcare workers. Service reconfiguration and the adoption of telehealth have been essential adaptations for the pandemic response, offering long-term value. However, our findings highlight the need to better integrate psychosocial support and the important role of carers into evolving pandemic response measures. Learnings from this study could inform service improvements that would benefit patients and carers longer-term.
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Project description:BackgroundWith increasing globalisation, the challenges of providing accessible and safe healthcare to all are great. Studies show that there are substantial numbers of people who are not fluent in English to a level where they can make best use of health services. We examined how health professionals manage language barriers in a consultation.Methods and findingsThis was a cross-sectional study in 41 UK general practices . Health professionals completed a proforma for a randomly allocated consultation session. Seventy-seven (63%) practitioners responded, from 41(59%) practices. From 1008 consultations, 555 involved patients who did not have English as a first language; 710 took place in English; 222 were in other languages, the practitioner either communicating with the patient in their own language/using an alternative language. Seven consultations were in a mixture of English/patient's own language. Patients' first languages numbered 37 (apart from English), in contrast to health practitioners, who declared at least a basic level of proficiency in 22 languages other than English. The practitioner's reported proficiency in the language used was at a basic level in 24 consultations, whereas in 21, they reported having no proficiency at all. In 57 consultations, a relative/friend interpreted and in 6, a bilingual member of staff/community worker was used. Only in 6 cases was a professional interpreter booked. The main limitation was that only one random session was selected and assessment of patient/professional fluency in English was subjective.ConclusionsIt would appear that professional interpreters are under-used in relation to the need for them, with bilingual staff/family and friends being used commonly. In many cases where the patient spoke little/no English, the practitioner consulted in the patient's language but this approach was also used where reported practitioner proficiency was low. Further research in different setting is needed to substantiate these findings.
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Project description:BackgroundThe treatment paradigm for multiple myeloma (MM) continues to evolve with the development of novel therapies and the earlier adoption of continuous treatments into the treatment pathway. Lenalidomide-refractory patients now represent a challenge with inferior progression free survival (PFS) reported to subsequent treatments. We therefore sought to describe the natural history of MM patients following lenalidomide in the real world.MethodsThis was a retrospective cohort review of patients with relapsed MM who received lenalidomide-based treatments in the U.K. Data were collected for demographics, subsequent therapies, treatment responses, survival outcomes and clinical trial enrollment.Results198 patients received lenalidomide-based treatments at a median of 2 prior lines of therapy at a median of 41 months (range 0.5-210) from diagnosis. 114 patients (72% of 158 evaluable) became refractory to lenalidomide. The overall survival (OS) after lenalidomide failure was 14.7 months having received between 0-6 subsequent lines of therapy. Few deep responses were observed with subsequent treatments and the PFS to each further line was < 7 months. There was a steep reduction in numbers of patients able to receive further treatment, with an associated increase in number of deaths. The OS of patients progressing on lenalidomide who did not enter a clinical trial incorporating novel agents was very poor (8.8 months versus 30 months, p 0.0002), although the trials group were a biologically fitter group.ConclusionThese data demonstrate the poor outcomes of patients failing lenalidomide-based treatments in the real world, the highlight need for more effective treatments.
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Project description:Due to the increasing incidence and prevalence of neuroendocrine tumors (NETs), there is a need to assess any gaps in awareness and care. A survey was undertaken in 2017 to identify perceived unmet needs from the perspectives of patients/families, patient advocates and health care professionals (HCPs). The survey consisted of 33-37 questions (depending on type of respondent) across four areas: information, care, treatments and research. In total, 443 participants from 26 countries responded: 338 patients/families, 35 advocates and 70 HCPs. Perceived unmet needs regarding provision of information at diagnosis differed between groups. While 59% of HCPs believed they provided sufficient information, informational needs were mostly/fully met for only 30% of patients and 18% of advocates. Additionally, 91% of patients and 97% of advocates felt that patients had to search for information themselves. Availability of Gallium-68-Dotatate PET/CT scan was limited for the majority of patients (patients: 73%; advocates: 85%; HCP: 86%), as was access to treatments, particularly peptide receptor radionuclide therapy (patients: 42%; advocates: 95%; HCPs: 77%). All groups felt that standards of care, including psychological needs and diagnosis of mental health, were not fully met. Although about two-thirds of patients were managed by a multidisciplinary team, 14% of patients reportedly did not have enough contact. All groups supported more patient involvement in research; patients and advocates prioritized improvement in diagnosis and HCPs focused on clinical trials. This survey revealed significant unmet needs but differing perceptions regarding these among the groups. There is a need for investigation and collaboration to improve standards of care for NET patients.
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| S-EPMC3085873 | biostudies-literature
Project description:BackgroundThe reasons for acute hospital admissions among people with Parkinson's disease are well documented. However, understanding of crises that are managed in the community is comparatively lacking. Most existing literature on the causes of crisis for people with Parkinson's disease (PwP) uses hospital data and excludes the individual's own perspective on the crisis trigger and the impact of the crisis on their care needs.ObjectiveTo identify the causes and impact of crises in both community and hospital settings, from a patient and carer perspective.MethodsA total of 550 UK-based PwP and carers completed a survey on (a) their own personal experiences of crisis, and (b) their general awareness of potential crisis triggers for PwP.ResultsIn addition to well-recognised causes of crisis such as falls, events less widely associated with crisis were identified, including difficulties with activities of daily living and carer absence. The less-recognised crisis triggers tended to be managed more frequently in the community. Many of these community-based crises had a greater impact on care needs than the better-known causes of crisis that more frequently required hospital care. PwP and carer responses indicated a good general knowledge of potential crisis triggers. PwP were more aware of mental health issues and carers were more aware of cognitive impairment and issues with medications.ConclusionThese findings could improve care of Parkinson's by increasing understanding of crisis events from the patient and carer perspective, identifying under-recognised crisis triggers, and informing strategies for best recording symptoms from PwP and carers.
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Project description:BackgroundThe utilization of total hip arthroplasty (THA) and total knee arthroplasty (TKA) increased after Medicaid expansion under the U.S. Affordable Care Act (ACA), suggesting a potential unmet need for THA and TKA. We examined the timing of THA and TKA in patients after obtaining Medicaid expansion insurance coverage. We hypothesized that patients with Medicaid expansion insurance would undergo a surgical procedure sooner than patients in traditional Medicaid populations.MethodsWe used administrative data from a Medicaid managed care company to determine the timing of primary THA and TKA in patients who were 18 to 64 years of age in 4 states with Medicaid expansion (Illinois, Ohio, Oregon, and Washington) and 4 states without Medicaid expansion (Louisiana, Mississippi, Texas, and Wisconsin) from 2008 to 2015. The insurance types were Medicaid expansion, Medicaid plans for Supplemental Security Income (SSI), or Temporary Assistance for Needy Families (TANF). Roughly, these 3 groups correspond to relatively healthy childless adults, relatively unhealthy disabled adults, and parents of children with Medicaid insurance. The main outcome measure was time from enrollment to the surgical procedure. The primary exposure of interest was insurance type. We used a generalized linear regression model to adjust for patient age, sex, social deprivation, surgeon supply and reimbursement, and state-level Medicaid enrollment.ResultsIn the unadjusted analysis of 4,117 patients, there was a significantly shorter time from enrollment to THA and TKA for the expansion group (median, 7.5 months) relative to the SSI group (median, 16.1 months; p < 0.0001) and the TANF group (median, 12.2 months; p < 0.0001). In the adjusted analysis, the time from enrollment to THA and TKA was significantly shorter in the expansion group (β, -1.21 [95% confidence interval (CI), -1.35 to -1.07]; p < 0.001) compared with the TANF group (β, -0.27 [95% CI, -0.38 to -0.17]; p < 0.001) and the SSI group (reference). Compared with the SSI group, these coefficients are equivalent to a 70% shorter time to the surgical procedure in the expansion group and a 24% shorter time to the surgical procedure in the TANF group.ConclusionsOur findings suggest an unmet need for THA and TKA among newly enrolled Medicaid expansion beneficiaries. This need should be considered by surgeons, hospitals, and policymakers in ensuring access to care. Furthermore, consideration should be given to existing insurance-based disparities in access to orthopaedic care, as these may be exacerbated by an increased demand for THA and TKA from Medicaid expansion beneficiaries.
| S-EPMC8313181 | biostudies-literature