25 research outputs found
Nursing Leaders as Visionaries and Enablers of Action
ObjectivesThe engagement of nursing leaders is critical for the future of the cancer nursing profession, quality cancer care, and the overall health care system. The field of cancer care is facing enormous challenges, requiring strong nursing leadership. Cancer nursing leadership is needed to overcome the challenges caused by workforce shortages, restricted resources, historic and ongoing under-recognition of nursing, unsafe working conditions, and unequal access to education. The aim of this article is to contribute to the discussion about how cancer nursing leaders can act as visionaries and support transformation of cancer nursing for the future.Data SourcesAuthor experience, journal articles and organizational position papers were used.ConclusionTo improve the state of cancer nursing and the working conditions of the cancer nursing workforce, nursing leadership practices need to be embraced on all governance levels in clinical practice and academia. When effective and high-quality nursing leadership is enacted, positive outcomes for people affected by cancer, nursing, and health care systems can be achieved. Cancer nursing leadership needs to be supported through nursing scholarship, influencing national and global policies and strategies and by active involvement in national and international health care management.Implications for Nursing PracticeNursing leadership and governance is critical to strengthening the cancer nursing workforce. Strong nursing leadership is required to realize the vision for transforming the health care systems and cancer care. Therefore, collaboration among multidisciplinary leadership, health care organizations, academic institutions, professional organizations, and policy-making structures is warranted.</p
Use of information and communication technologies (ICTs) in cancer multidisciplinary team meetings: an explorative study based on EU healthcare professionals
Objectives: Multidisciplinary teams in cancer care are increasingly using information and communication technology (ICT), hospital health information system (HIS) functionalities and ICT-driven care components. We aimed to explore the use of these tools in multidisciplinary team meetings (MTMs) and to identify the critical challenges posed by their adoption based on the perspective of professionals representatives from European scientific societies. Design: This qualitative study used discussion of cases and focus group technique to generate data. Thematic analysis was applied. Setting: Healthcare professionals working in a multidisciplinary cancer care environment. Participants: Selection of informants was carried out by European scientific societies in accordance with professionals' degree of experience in adopting the implementation of ICT and from different health systems. Results: Professionals representatives of 9 European scientific societies were involved. Up to 10 ICTs, HIS functionalities and care components are embedded in the informational and decision-making processes along three stages of MTMs. ICTs play a key role in opening MTMs to other institutions (eg, by means of molecular tumour boards) and information types (eg, patient-reported outcome measures), and in contributing to the internal efficiency of teams. While ICTs and care components have their own challenges, the information technology context is characterised by the massive generation of unstructured data, the lack of interoperability between systems from different hospitals and HIS that are conceived to store and classify information rather than to work with it. Conclusions: The emergence of an MTM model that is better integrated in the wider health system context and incorporates inputs from patients and support systems make traditional meetings more dynamic and interconnected. Although these changes signal a second transition in the development process of multidisciplinary teams, they occur in a context marked by clear gaps between the information and management needs of MTMs and the adequacy of current HIS
Preparing for the incoming wave of biosimilars in oncology
With the imminent arrival of oncology biosimilars in the therapeutic paradigm, stakeholders including a clinician, specialist nurse, patient advocate, regulator and economist provide their perspective on optimising the uptake of these new agents in the treatment of cancer. A number of key messages emerge, based on the discussion that took place during a session of the European Society for Medical Oncology's Annual Congress, ESMO Madrid 2017. First, for successful integration of biosimilars into the global healthcare paradigm, informing and educating the full scope of stakeholders, including clinicians, nurses, pharmacists and patients, is primordial. Success is dependent on providing solid evidence and ensuring all voices are heard. Second, for oncology medicines, much can be learnt from the growing experience of approved biosimilars in other disease indications, with success stories for patients, their healthcare providers and healthcare budgets alike. Finally, effective sustainability of the impact on healthcare budgets and the redirection of these savings require education and transparency
Transethnic Genome-Wide Association Study Provides Insights in the Genetic Architecture and Heritability of Long QT Syndrome
BACKGROUND: Long QT syndrome (LQTS) is a rare genetic disorder and a major preventable cause of sudden cardiac death in the young. A causal rare genetic variant with large effect size is identified in up to 80% of probands (genotype positive) and cascade family screening shows incomplete penetrance of genetic variants. Furthermore, a proportion of cases meeting diagnostic criteria for LQTS remain genetically elusive despite genetic testing of established genes (genotype negative). These observations raise the possibility that common genetic variants with small effect size contribute to the clinical picture of LQTS. This study aimed to characterize and quantify the contribution of common genetic variation to LQTS disease susceptibility. METHODS: We conducted genome-wide association studies followed by transethnic meta-analysis in 1656 unrelated patients with LQTS of European or Japanese ancestry and 9890 controls to identify susceptibility single nucleotide polymorphisms. We estimated the common variant heritability of LQTS and tested the genetic correlation between LQTS susceptibility and other cardiac traits. Furthermore, we tested the aggregate effect of the 68 single nucleotide polymorphisms previously associated with the QT-interval in the general population using a polygenic risk score. RESULTS: Genome-wide association analysis identified 3 loci associated with LQTS at genome-wide statistical significance (P<5×10-8) near NOS1AP, KCNQ1, and KLF12, and 1 missense variant in KCNE1(p.Asp85Asn) at the suggestive threshold (P<10-6). Heritability analyses showed that ≈15% of variance in overall LQTS susceptibility was attributable to common genetic variation (h2SNP 0.148; standard error 0.019). LQTS susceptibility showed a strong genome-wide genetic correlation with the QT-interval in the general population (rg=0.40; P=3.2×10-3). The polygenic risk score comprising common variants previously associated with the QT-interval in the general population was greater in LQTS cases compared with controls (P<10-13), and it is notable that, among patients with LQTS, this polygenic risk score was greater in patients who were genotype negative compared with those who were genotype positive (P<0.005). CONCLUSIONS: This work establishes an important role for common genetic variation in susceptibility to LQTS. We demonstrate overlap between genetic control of the QT-interval in the general population and genetic factors contributing to LQTS susceptibility. Using polygenic risk score analyses aggregating common genetic variants that modulate the QT-interval in the general population, we provide evidence for a polygenic architecture in genotype negative LQTS.</p
The hospital environment from the perspective of young people affected by cancer
Introduction and Aims:
Adolescence is a period of transition that comes with complex development processes. When adolescents are confronted with a chronic disease or the consequences of an accident, this development is jeopardized. They are separated from the familiar environment and exposed to hospital environments that are often unadjusted to young people. Despite growing research on how the physical environment affects the well-being of the (child as) patient, the adolescent is often overlooked.
Therefore, we investigated how adolescents experience a hospital stay and to what extent their experience is influenced by the physical environment. In addition, we investigated what an adolescent-friendly hospital environment means from the perspective of the adolescents themselves.
Methods:
We (retrospectively) interviewed ten adolescents who are or have been affected by cancer between the age of 14 and 25. More important than their age, however, was their long-term experience as a patient. Preliminary findings were discussed with professional experts and adjusted to their input.
Results:
Our findings suggest that adolescent patients are primarily looking for connections with life outside the hospital. Design strategies that contribute to this include maximizing freedom of choice, flexibility and spatial variety; attending to the comfort of visiting family and friends; providing in age-appropriate activities, nice outdoor spaces and internet access; pursuing aesthetic coherence and a homelike atmosphere; and combining individual patient rooms with a variety of communal rooms.
Discussion and Conclusion:
There is a need for a hospital environment dedicated to young people, whether this takes shape as a separate adolescents’ ward, or as the grouping of adolescents on children’s and/or adult wards. Even if adolescent patients’ needs may somehow resemble those of other patient groups, as a group they clearly have specific features and needs, and this specificity is largely hidden in the process of development and transition they are undergoing.status: publishe
The role of cancer nurses in cancer-related pain management in Europe
Cancer pain is a common symptom in patients with cancer and can largely affect their quality of life. Pain management is important to minimize the impact of pain on daily activities. Cancer nurses are significantly involved in all steps of pain management and contribute to the success of therapy through their knowledge and expertise. While they generally play an important role in the screening, assessment, diagnosis, treatment and follow-up of patients and their (pain) symptoms, this varies from country to country in Europe. An important aspect is their role in educating patients and their families about what pain is, what impact it can have, how it can be treated pharmacologically or non-pharmacologically and what effects or problems can occur during treatment. While there is a great discrepancy between education and training opportunities for cancer nurses in different European countries, there is a continued need for education and training in pain management. Cancer is increasingly becoming a chronic disease, and the management of pain in cancer survivors will be crucial to maintain an adequate quality of life. With this, the crucial role of cancer nurses is becoming even more important.</p