Where is the Person in Symptom Cluster Research? The Experience of Symptom Clusters in Patients with Advanced Lung Cancer

Where is the Person in Symptom Cluster Research? The Experience of Symptom Clusters in Patients with Advanced Lung Cancer This thesis describes a three-year qualitative study which aimed to explore the experience of symptom clusters in patients with advanced lung cancer. The study employed a patient-focused approach utilising Interpretative Phenomenological Analysis (IPA) (Smith et al. 2009a). This methodology (IPA), informed by a contextual constructionist stance, was selected to explore the experience of symptom clusters, for its focus on the lived experience, the context and meanings which surround such experiences and its idiographic approach. Ten patients (a sample size which is the upper limit of the number of participants advocated for studies employing IPA (Smith et al. 2009b;Reid et al. 2005;Smith and Osborn 2004)) with advanced lung cancer took part in the study and data were collected using unstructured, in-depth interviews at two time points: on recruitment and three to five weeks later. Data were analysed using Interpretative Phenomenological Analysis, within the framework advocated by Smith and Osborn (2003). The study generated interesting and significant findings. The experience of symptom clusters in patients with advanced lung cancer was characterised by two super-ordinate themes: ‘The lived experience of symptom clusters and the role of context and meaning’ and ‘Symptom clusters and loss of sense of self’. The super-ordinate theme of ‘The lived experience of symptom clusters and the role of context and meaning’ in the first instance, illustrates that the participants in this study were experiencing symptom clusters and providing detail on the components, nature and patterning of the symptom clusters reported, particularly the way that one or two salient symptoms were commonly highlighted from all the other symptoms experienced. This super-ordinate theme also demonstrates the core role that context and meaning play in the lived experience of symptom clusters, with many of the participants in this study framing their experiences of symptom clusters within a fear of death, stigma and loss of sense of self. The second super-ordinate theme informing this thesis is ‘Symptom clusters and loss of sense of self’. This super-ordinate theme illustrates the impact of symptom clusters on the participants’ lives, and how this, in turn, impacted on their sense of self in a number of different ways. For some, their sense of self was compromised by the concurrent symptoms that they were experiencing, as they prevented them from undertaking roles and activities that they were accustomed to in the past. This super-ordinate theme also highlights the role of the body relative to the self, and describes how the participants’ sense of self was transiently lost during periods when they experienced symptom clusters of high severity. The findings presented also demonstrate the knock-on effect of loss of sense of self experienced, with the participants feeling like they were a burden due to their incapacitation, and at times hiding the multiple symptoms that they were experiencing, in a bid to protect their loved ones from their illness. In light of the loss of sense of self experienced, this super-ordinate theme also demonstrates how the participants employed various strategies in a bid to try and maintain a coherent and valued sense of self. The findings presented illustrate how the use of IPA facilitated the collection of data that provided an in-depth understanding of the complexity of the experience of symptom clusters in patients with advanced lung cancer, adding a unique contribution to this body of knowledge. The results of this study highlight the limitations of definitions that currently underpin the study of symptom clusters in patients with cancer and the current empirical base to date, particularly the way that they do not acknowledge the core role that context and meaning play in the lived experience of this phenomenon. This lack of recognition of these core elements of the patient experience of symptom clusters poses the risk of this body of research producing data that have limited relevance to the patient and therefore clinical practice. It is therefore proposed that the study of symptom clusters in patients with cancer needs to move away from the reductionist approach which currently dominates and to broaden its scope, to one that acknowledges the complexity of the experience of symptom clusters, the core role that context and meaning play in such experiences, and contributions that patient experience can make in advancing this important and emerging body of research

The Effect of 5-Fluorouracil Chemotherapy on Energy Metabolism, Body Composition and Quality of Life in Patients With Colorectal Liver Metastases

Chemotherapy for metastatic colorectal cancer has been used for palliation for many years. During this time 5-FU has remained the single most effective anti-neoplastic agent in the treatment of colorectal cancers. Whilst many studies have assessed the safety and efficacy of chemotherapeutic regimens using response rate, toxicity profiles and quality of life, few studies have evaluated the effect of chemotherapy on the metabolic response of the host in particular energy balance, body composition and quality of life. The aim of this thesis was to examine the relationship between the systemic inflammatory response and body composition, dietary intake, resting energy expenditure, cytokine, hormone and protein metabolism in patients with colorectal liver metastases. In addition, the short and long term-effects of 5-FU based chemotherapy on the above measures of host metabolism, and quality of life in patients with colorectal liver metastases were assessed. In chapter 3, the host metabolic response of 5-FU based chemotherapy was assessed in patients with colorectal liver metastases. In 25 patients, haematological and biochemical parameters were measured before and after 6 cycles of chemotherapy. In a subset of 11 patients, energy balance, body composition, acute phase protein response and quality of life were measured. The results of this study indicate that, in patients with colorectal liver metastases receiving 5-FU based chemotherapy, a number of changes occur in both haematological and biochemical parameters. These changes were consistent with those commonly associated with chemotherapy. However, it was of interest that positive acute phase proteins such as fibrinogen fell in concentration during the course of the study while other proteins such as globulins did not. These results are consistent with 5-FU based chemotherapy resulting in a reduction of the systemic inflammatory response. Measured resting energy expenditure values were also noted to be higher than would be predicted whether expressed as kilocalories per day (median 113%) or per lean body mass derived from total body water (median 120%). There were no significant differences in energy intake or resting energy expenditure during the course of the study. Furthermore, in the present study where the majority of patients responded to treatment, there were no alterations in any of the body composition parameters. These results are therefore consistent with previous work which concluded, in lung cancer patients, that there was evidence for tumour induced hypermetabolism independent of changes in gross body composition, although the absolute increase in hypermetabolism is small. Global quality of life and Kamofsky performance status also did not change significantly during the course of the study. There was no change in physical function as measured by performance status and would suggest that the effect of 5-FU based chemotherapy, if any, on host energy metabolism is small. In summary, in patients with colorectal liver metastases, 5FU chemotherapy is 'fairly well' tolerated and is associated with a reduction in white blood cells, liver enzymes and acute phase proteins. In the sub-group there were no detectable effects on energy metabolism, body composition or quality of life. Tumour markers such as CEA have been demonstrated to be effective in alerting clinicians of the possibility of disease progression in patients with colorectal cancer. Furthermore, the presence and the magnitude of a systemic inflammatory response has also been reported to be associated with disease progression in patients with colorectal cancer. However, overall, few 'host markers' have been assessed in the development of disease progression in patients with colorectal cancer. Chapter four details a study of biochemical and haematological parameters in disease progression of patients with colorectal liver metastases receiving 5-FU based chemotherapy. Host factors that changed prior to CT defined progression were examined in 11 patients with colorectal liver metastases by comparing periods of 'responding disease' to 'progressive disease'. In addition, longitudinal assessment of patients prior to disease progression was assessed. On comparison of parameters during a period of 'responding' disease and 'progressive' disease, an increase in white cell count, neutrophil count and C-reactive protein on disease progression was observed. With regard to longitudinal assessment, white cell count, C-14 reactive protein and carcinoembryonic antigen were found to significantly change prior to CT-defined disease progression. Therefore, the results of this study may suggest that 12-14 weeks prior to CT-defmed disease progression there is tumour growth (as indicated by carcinoembryonic antigen levels) causing cell damage (as indicated by the transaminases) and necrosis, resulting in systemic inflammation, which in turn results in changes in liver protein production (C-reactive protein). (Abstract shortened by ProQuest.)

A systematic review of the supportive care needs of people living with and beyond cancer of the colon and/or rectum

Purpose: Gaining a clear understanding of the health needs and concerns of people with cancer of the colon and/or rectum can help identify ways to offer a comprehensive care package. Our aim was to systematically assess the relevant literature and synthesise current available evidence. Methods Asystematic review was conducted according to the PRISMA Statement guidelines. Five electronic databases were searched to identify studies employing qualitative and/or quantitative methods. Pre-specified selection criteria were applied to all retrieved records. Findings were integrated in a narrative synthesis. Results: Of 3709 references initially retrieved, 54 unique studies were retained. A total of 136 individual needs were identified and classified into eight domains. Just over half of the needs (70; 51%) concerned information/education or health system/patient-clinician communication issues. Emotional support and reassurance when trying to deal with fear of cancer recurrence featured as themost prominent need regardless of clinical stage or phase of treatment. Information about diet/nutrition and about long-term self-management of symptoms and complications at home; tackling issues relating to the quality and mode of delivery of health-related information; help with controlling fatigue; and on-going contact with a trustworthy health professional also featured assalient needs. Available research evidence is of moderate-to-good quality. Conclusions: Investing time to sensitively inquire about the supportive care needs of this patient population is key, whilst evaluating and re-shaping clinical interactions based on patients' priorities is equally essential. The diverse needs identified require a multi-professional and multi-agency approach to ensure unmet needs are addressed or measures offered

Enabling people with dementia to self-report data using digital technologies and methods

Remote collection of digital self-reported data is becoming more prevalent in health care practice as services adopt a more person-centred care approach and deliver more care at a distance. Whilst the benefits of collecting such data using digital technologies is increasingly being recognized, This method can be a major barrier to People with Dementia (PwD) who often struggle using electronic devices to self-report. Factors such as platform design, literacy, language proficiency, and physical/mental capability severely impacting digital self-reported data collection especially if such technologies are not designed with this population

Co-designing a digital solution using PROMs for people with dementia

PROMs are medical questionnaires used to assess and monitor a patient’s condition and quality of life from their own perspective. Routinely completed by patients during treatment PROMs are an effective way to e measure success, influence future decision making and give patients a voice on the care they receive. While PROMs have seen increased use & success in various healthcare fields, traditional PROMs can be challenging for People with Dementia. One possible way to improve PROMs is the use of the Intelligent Virtual Assistants, devices that allow users to communicate, interact and respond using a variety of different ways such as Text, Voice and Visuals. This approach gives users more ways to communicate their PROMs, collect them instantly and adapt to patients changing need

Results of co-designing a digital solution using patient reported outcome measures for people with dementia

Patient Reported Outcome Measures (PROMs) are tools used to routinely measure subjective outcomes directly from patients during health care or treatment and are an effective way of determining an individual’s changing needs. Digital technologies have increasingly enabled PROMs to be self-reported by patients and collected remotely though this can be a major barrier to People with Dementia (PwD) who often struggle using electronic devices

NHS Scotland Staff Experience and Continuous Improvement Model : Research into Implementation

This research review of the implementation of iMatter was commissioned by The Scottish Government Directorate for Health Workforce, Leadership and Service Reform in conjunction with the Health and Social Care Analysis Division. The aim of the research was to provide evidence to support and inform ongoing work to ensure that there is a meaningful, effective and cost-effective approach to staff engagement in health and social care. Staff experience and engagement have been central themes of policies developed by the Scottish Government in recent years to modernise NHSScotland and the wider public sector. Supporting engagement is a priority for NHSScotland and Health and Social Care Partnerships (H & SCPs), as a route to improving the experience of employees (for example, in relation to motivation, commitment and empowerment), contributing to organisational goals and delivering positive health and care outcomes for patients and service users. iMatter has been developed since 2013 under the remit of the existing NHSScotland Scottish Workforce and Staff Governance (SWAG) Committee as a means of more effectively measuring the experience of staff working in health and social care. The further roll-out of iMatter to most H & SCPs in Scotland means that it is now also able to capture the experiences of local authority-employed social care and social work staff. iMatter has been designed to map onto and reflect NHS Staff Governance Standards. As we report below, iMatter is an effective means of capturing staff experience and engagement in line with these standards Our research also captured views of the NHSScotland Dignity at Work (D@W) Survey that was run in 2017. D@W was designed to bridge the gaps between the items in iMatter and the previous NHSScotland National Staff Survey by reporting experiences around bullying and harassment, as well as views on experiences of violence, whistleblowing and staff resourcing. The research reported in this document sought to: * consider validation and response rate issues associated with iMatter and D@W; * review the presentation and utility of iMatter report data; * gather and analyse evidence on the of acceptability of iMatter and D@W; * gather and analyse evidence on facilitators of the implementation of iMatter and areas of best practice; and * identify ongoing challenges and areas where more work is needed

Comparing machine learning clustering with latent class analysis on cancer symptoms' data

Symptom Cluster Research is a major topic in Cancer Symptom Science. In spite of the several statistical and clinical approaches in this domain, there is not a consensus on which method performs better. Identifying a generally accepted analytical method is important in order to be able to utilize and process all the available data. In this paper we report a secondary analysis on cancer symptom data, comparing the performance of five Machine Learning (ML) clustering algorithms in doing so. Based on how well they separate specific subsets of symptom measurements we select the best of them and proceed to compare its performance with the Latent Class Analysis (LCA) method. This analysis is a part of an ongoing study for identifying suitable Machine Learning algorithms to analyse and predict cancer symptoms in cancer treatment

Employing patient-reported outcome (PRO) measures to support newly diagnosed patients with melanoma: feasibility and acceptability of a holistic needs assessment intervention

Purpose: Living with a melanoma diagnosis can be challenging. We aimed to assess the feasibility, acceptability, and perceived value of a nurse-led intervention that utilised patient-reported outcome (PRO) measures to identify and address the supportive care needs of newly diagnosed patients with Stage I/II melanoma over the first 4 months post-diagnosis. Methods: We conducted an exploratory, repeated-measures, single-arm, feasibility trial. One baseline (4 weeks post-diagnosis; T1) and one follow-up intervention session (4 weeks after wide local excision; T3) took place, two months apart. Patient survey data were collected monthly, at four assessment points (T1-T4), followed by exit interviews. Results: A recruitment rate of 55% (10/18) was achieved. The skin cancer nurse specialist (CNS) performed 19 in-clinic patient assessments within 6 months. One patient missed their follow-up intervention session (90% retention rate). Three participants (30%) were lost to follow-up at T4. Patients endorsed the standardised use of easy-to-use PRO measures as a means to help them shortlist, report and prioritise their needs. The CNS viewed the intervention as a highly structured activity that allowed tailoring support priority needs. A sizeable reduction in information needs was found from T1 to T4 (Standardised Response Mean [SRM] change = −0.99; p < 0.05). From T1 to T2, significant reductions in psychological (SRM change = −1.18; p < 0.001), practical (SRM change = −0.67; p < 0.05) and sexuality needs (SRM change = −0.78; p < 0.05) were observed. Conclusions: The intervention appears to be feasible in clinical practice and acceptable to both patients with newly diagnosed melanoma and clinicians. Future research is warranted to test its effectiveness against standard care

Patient factors influencing symptom appraisal in oesophageal cancer : a qualitative interview

Oesophageal cancer (EC) is characterized by vague symptoms and is often diagnosed at an advanced stage, leading to poor outcomes. Therefore, we aimed to investigate whether there might be any patient factors contributing to delay in EC diagnosis, and focused on the symptom appraisal and help-seeking strategies of people diagnosed with EC in the UK. Semi-structured interviews were conducted with 14 patients aged >18 years with localised EC at point of diagnosis. Purposive sampling was used to include patients from one to nine months post-diagnosis. Analysis of the interviews identified three main themes: Interpreting symptoms, Triggers to seeking help, and Making sense of an unfamiliar cancer. Findings suggested that participants normalised symptoms or used previous health experiences as a means to interpret their symptoms. The majority of participants were not alarmed by their symptoms, mainly because they had very little knowledge of EC specific symptoms. Lack of knowledge also influenced participants’ sense-making of their diagnosis. The findings highlight that the process of symptom appraisal in EC is likely to be inaccurate, which may hinder early presentation and thus diagnosis. Public health campaigns communicating EC specific symptoms, however, could shorten the appraisal period and lead to earlier diagnosis