29 research outputs found
Saying ‘No’: A biographical analysis of the experiences of women with a genetic predisposition to developing breast/ovarian cancer who reject risk reducing surgery
Background: Genetic technologies have identified some of the genes implicated in cancer susceptibility. Women with mutations in breast/ovarian cancer-susceptibility genes (BRCA1 and 2) have a lifetime combined risk of breast/ovarian cancer of more than 80%. Risk reducing surgery (RRS) reduces cancer risk by as much as 90% in high risk populations. Despite this, some BRCA1/2 mutation-positive women say no to RRS.
Purpose: To illuminate an understanding of why women at high risk of developing breast/ovarian cancer say no to risk reducing surgery (RRS).
Design: Denzin’s (1989) interpretive biography was combined with Dolby-Stahl’s (1985) literary folkloristic methodology to provide a contextualised narrative of the life experiences of six high risk women who said no to RRS. The participants’ stories were captured through semi-structured interviews then read and interpreted through the lenses of three literary theories namely Marxist, Foucauldian and Feminist.
Findings: Different understandings of risk were central to the decision to say no to RRS. RRS was understood as a risk to body and self which superseded the genetic risk of cancer. However despite having the strength to keep their still-healthy bodies intact, the participants benchmarked their decisions to say no against the dominant discourse on cancer risk, leaving them in an unending state of flux as to whether they had made the right decision. The participants shared a genetic pessimism but there also existed an emergent private folklore which illuminated how they attempted to make sense of their experiences and negotiate the conflicts and contradictions thrown up by competing discourses.
Conclusions: The relationship between genetic testing and cancer prevention strategies is not straightforward and genetic information has the potential to harm as well as help high risk women. It is important health care providers approach this area from the viewpoints of those directly involved since without understanding; strategies to support these women may be ineffective
The Re-design of a Systemic Anti-Cancer Course
Staff involved in the administration of systemic anti-cancer therapy (SACT) must demonstrate knowledge and skills in accordance with the NHS Education for Scotland Education and Training Framework (NES, 2013) and associated SACT competencies (NES, 2014). A challenge exists in educating staff to ensure best practice in SACT administration whilst balancing demands for time away from the clinical area and ensuring staff achieve competence in a timely manner. This presentation outlines how an educational initiative was developed to ensure practitioners are educated regarding best practice in SACT administration and are able to demonstrate the required knowledge and skills within a shorter timeframe
The impact of a PICC line on the patient receiving modified de Gramont ambulatory chemotherapy
Growing demand for cytotoxic chemotherapy has led to restructuring of cancer services in the UK. The majority of patients who receive chemotherapy now do so in the outpatient/ambulatory setting. Ambulatory care is now the fastest growing health-care service delivery model in industrialised nations. The expansion of ambulatory chemotherapy has led to an increase in the use of Peripherally Inserted Central Catheters (PICC lines) which are seen as a cost-effective way of safely administering chemotherapy in the ambulatory setting. The Modified de Gramont (MdG) regimen is one such commonly used ambulatory chemotherapy regimen which requires insertion of a PICC line or other Central Venous Access Device (CVAD) to undertake. Despite the additional care requirements of ambulatory chemotherapy patients, little is known about the ways in which PICC lines impact on the lives of patients and the challenges they face in coping at home with a PICC line in situ. It was the aim of this study to examine the views and experiences of patients receiving ambulatory MdG chemotherapy via a PICC line, to discover which aspects of living with a PICC line caused most difficulty and to determine if patients viewed PICC lines as a benefit or a burden when receiving ambulatory chemotherapy. The study was conducted in a large oncology unit in Scotland. A triangulated descriptive study was implemented in two phases over two years. Phase 1 used semi-structured interviews with a convenience sample of 10 MdG patients. The qualitative data were analysed using content analysis and emerging themes identified. The themes were used to construct the questionnaire used in Phase 2 with a convenience sample of 62 MdG patients (response rate 90%). The quantitative data were subject to analysis using Confidence Interval estimation to determine which views were most likely to be held by the population represented by the sample in this study. The key findings were that the majority of MdG PICC-line patients held favourable views towards having a PICC line and generally adapted well to the experience. The main reported benefits in having a PICC line were the reduced need for venepuncture and cannulation, the ease of chemotherapy administration and not requiring hospital admission to receive chemotherapy. Bathing, showering, hair washing and sleeping caused patients most difficulty when living with a PICC line. The most common fears when living with a PICC line were of the chemotherapy spilling, PICC-line malfunction and the PICC line falling out. Furthermore, a number of challenges in providing informational support to this group of patients were evident as patients reported high information needs yet found the information given overwhelming and at times unhelpful. Despite this, the biggest majority of patients viewed the PICC line as a benefit not a burden when receiving MdG ambulatory chemotherapy
The Interpretive Approach as a Means of Understanding the Misunderstood
People’s experiences of health and illness are important areas of health research and practice. The interpretive process, and more significantly the biographical approach (Denzin, 1989), is an approach in which there is a focus on personal epiphanies which shape and reflect the stories people tell of their experiences. Dolby-Stahl (1985) contends stories of personal experience sit within the genre of folklore and that the reading of such stories must take into account the social, cultural, and historical contexts which influence and give meaning to experience
Effectiveness and safety of opicapone in Parkinson’s disease patients with motor fluctuations: the OPTIPARK open-label study
Background The efficacy and safety of opicapone, a once-daily catechol-O-methyltransferase inhibitor, have been established in two large randomized, placebo-controlled, multinational pivotal trials. Still, clinical evidence from routine practice is needed to complement the data from the pivotal trials. Methods OPTIPARK (NCT02847442) was a prospective, open-label, single-arm trial conducted in Germany and the UK under clinical practice conditions. Patients with Parkinson’s disease and motor fluctuations were treated with opicapone 50 mg for 3 (Germany) or 6 (UK) months in addition to their current levodopa and other antiparkinsonian treatments. The primary endpoint was the Clinician’s Global Impression of Change (CGI-C) after 3 months. Secondary assessments included Patient Global Impressions of Change (PGI-C), the Unified Parkinson’s Disease Rating Scale (UPDRS), Parkinson’s Disease Questionnaire (PDQ-8), and the Non-Motor Symptoms Scale (NMSS). Safety assessments included evaluation of treatment-emergent adverse events (TEAEs) and serious adverse events (SAEs). Results Of the 506 patients enrolled, 495 (97.8%) took at least one dose of opicapone. Of these, 393 (79.4%) patients completed 3 months of treatment. Overall, 71.3 and 76.9% of patients experienced any improvement on CGI-C and PGI-C after 3 months, respectively (full analysis set). At 6 months, for UK subgroup only (n = 95), 85.3% of patients were judged by investigators as improved since commencing treatment. UPDRS scores at 3 months showed statistically significant improvements in activities of daily living during OFF (mean ± SD change from baseline: − 3.0 ± 4.6, p < 0.0001) and motor scores during ON (− 4.6 ± 8.1, p < 0.0001). The mean ± SD improvements of − 3.4 ± 12.8 points for PDQ-8 and -6.8 ± 19.7 points for NMSS were statistically significant versus baseline (both p < 0.0001). Most of TEAEs (94.8% of events) were of mild or moderate intensity. TEAEs considered to be at least possibly related to opicapone were reported for 45.1% of patients, with dyskinesia (11.5%) and dry mouth (6.5%) being the most frequently reported. Serious TEAEs considered at least possibly related to opicapone were reported for 1.4% of patients. Conclusions Opicapone 50 mg was effective and generally well-tolerated in PD patients with motor fluctuations treated in clinical practice. Trial registration Registered in July 2016 at clinicaltrials.gov (NCT02847442)
Cytotoxic Chemotherapy for Incurable Colorectal Cancer: Challenges in Living with a PICC-line
No abstract available
Saying No: A Biographical Analysis of Why Women with a Genetic Predisposition to Developing Breast/Ovarian Cancer Reject Risk Reducing Surgery
Title: Saying no: a biographical analysis of why women with a genetic predisposition to developing breast/ovarian cancer refuse risk reducing surgery.
Background: Genetic testing for breast/ovarian cancer susceptibility aims to identify individuals at high risk of cancer and facilitate risk-reducing interventions. Risk-reducing surgery (RRS) reduces cancer risk and is the principle primary preventive intervention. Despite this, some women make what appear to be ‘anti-health’ decisions by refusing RRS.
Aim: To advance an understanding of why BRCA1/2 mutation carriers say no to RRS.
Methods: Denzin’s (1989) interpretive biography was combined with Dolby-Stahl’s (1985) literary folkloristic methodology to provide a contextualised narrative of the life experiences of six high risk women who said no to RRS.
Results: Different understandings of risk underpinned the decision to say no. RRS was perceived as damaging the body and hence was a greater risk to self than cancer risk. Breasts and ovaries were treasured as vital body parts which could not be given up or replaced on the basis of risk. Participants shared a genetic pessimism of regret and uncertainty as they were transformed into perpetual patients awaiting their fate.
Discussion: The decision to say no to RRS must be understood within social, cultural and historical contexts which shape experience. The dominant medical model for dealing with cancer risk may marginalise high risk women and paradoxically expose them to greater risk. The relationship between genetic testing and cancer prevention is not straightforward and genetic information has the potential to harm as well as help.
Conclusions: The findings from this study are relevant to all nurses given the prominence of genetics in contemporary health care. It is important health care providers approach this area from the viewpoints of those directly involved since without understanding; interventions and supportive strategies may be ineffective
Cytotoxic Chemotherapy for Incurable Colorectal Cancer: Challenges in Living with a PICC-line
No abstract available