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.

Due to advances in detection and treatment, increasing numbers of women are diagnosed with, and surviving, breast cancer each year, making women with breast cancer one of the largest groups of cancer survivors. Hence, ensuring good healthrelated quality of life (HRQoL) following treatment has become a focal point of cancer research and clinical interest. While our understanding about the impact of breast cancer is improving, little is known about the HRQoL among survivors in non-urban areas. This is important locally, as 45% of breast cancer survivors in Queensland, Australia, live outside major metropolitan areas. Therefore, this study investigated the HRQoL and accompanying correlates among regional and rural breast cancer survivors, and made comparisons with urban breast cancer survivors as well as women from the general population without a history of breast cancer. Three population-based studies comprise this project. Original data were collected by way of self-administered questionnaire from 323 women, diagnosed with a first, primary, invasive, unilateral breast cancer during 2006/2007 and residing in regional or rural areas of Queensland, 12 months following diagnosis. HRQoL was assessed using the Functional Assessment of Cancer Therapy, Breast plus additional concerns (FACT-B+4) questionnaire. Data from two existing data sources were also utilised. Women diagnosed with a first, primary, invasive, unilateral breast cancer in 2002 and residing within 100kms of Brisbane provided information on HRQoL, measured by the FACT-B+4, via self-administered questionnaire at six (n=287), 12 (n=277) and 18 (n=272) months post-diagnosis. Data at 12 months post-diagnosis was utilised for comparison with region and rural women with breast cancer. General population data for HRQoL, collected by self-administered questionnaire in 2004 using the Functional Assessment of Cancer Therapy-General (FACT-G) questionnaire, were derived from a subgroup of female residents without a history of breast cancer from urban (n=675), regional (n=184) and rural (n=281) Queensland. The two studies involving women with breast cancer were recruited sequentially through the Queensland Cancer Registry, whereas the study involving the general population used telephone survey methods initially to identify participants. Women who participated in all studies were aged between 30 and 74 years. Raw scores for overall HRQoL (FACT-B+4, FACT-G) and subscales were computed. According to developers of the instrument, raw score differences of eight points between groups on the FACT-B+4 scale and five points on the FACT-G scale reflect a clinically meaningful differences in HRQoL. Age-adjusted, mean HRQoL was similar between regional and rural women with breast cancer 12 months following diagnosis (e.g., FACT-B+4: 122.9 versus 123.7, respectively, p=0.74). However, younger regional and rural survivors reported lower HRQoL scores compared with their older counterparts (e.g., FACT-B+4: 112.0 and 115.8 versus 129.3 and 126.2, respectively, p<0.05 for all). In addition to age, other important correlates of lower overall HRQoL (FACT-B+4) among regional/rural breast cancer survivors included: receiving chemotherapy, reporting complications post-surgery, poorer upper-body function than most, higher amounts of stress, reduced coping, being socially isolated, not having a confidante for social-emotional support, unmet healthcare needs, and low self-efficacy. Multiple linear regression analysis was used to address the hypothesis regarding similarity of HRQoL following breast cancer among women residing in regional and rural locations. After adjusting for the above factors, there was no statistically significant or clinically important difference in overall HRQoL (FACT-B+4) between regional and rural women with breast cancer 12 months following diagnosis (122.1 versus 125.1, respectively, p=0.07). Data from regional and rural women were pooled, based on the above analyses, and compared with urban women. Multiple linear regression analysis was used to test the hypothesis that HRQoL following breast cancer among women residing in regional/rural locations would be lower than that reported by women residing in urban locations. Potential confounders of the association between overall HRQoL (FACT-B+4) and place of residence included: marital status, upper-body function, amount of stress and perceived handling of stress. After adjusting for factors that differed between urban and regional/rural survivors, overall HRQoL (FACT-B+4) was lower among younger regional/rural survivors than their urban peers, and the findings were both statistically significant and clinically important (115.3 versus 123.7, respectively, p=0.001). Older women reported similar mean HRQoL, regardless of regional/rural or urban residence (128.2 versus 131.6, respectively, p=0.03). Further multiple linear regression analyses were undertaken to investigate whether women with breast cancer would report HRQoL equivalent to that reported by similarly-aged women in the general population. After adjusting for potential confounding factors that are known or suspected risk factors for breast cancer (age, marital status, education level, private health insurance, smoking status, physical activity, body mass index, co-morbidities), overall HRQoL (FACT-G) among breast cancer survivors was comparable to the general population 12 months following diagnosis (urban: 88.0 versus 86.9, respectively, p=0.28; regional/rural: 86.2 versus 85.8, respectively, p=0.79). However, 26% of survivors experienced worse overall HRQoL (FACT-G) compared with normative levels. HRQoL subscales contributing most to this deficit were physical well-being, with 29% of breast cancer survivors reporting scores below the norm, and emotional well-being among younger women, with 46% reporting scores below the norm. Logistic regression analysis was used to identify subgroups of breast cancer survivors who reported HRQoL below normative levels; reporting poorer upper-body function than most and not handling stress well increased the odds of reporting overall HRQoL (FACT-G: odds ratios (ORs) = 4.44 and 4.24, respectively, p<0.01 for both), physical well-being (ORs = 5.93 and 2.92, respectively, p<0.01 for both) and emotional well-being (among younger women: ORs = 2.81 and 5.90, respectively, p<0.01 for both) below normative levels. The cross-sectional nature of the study design for regional and rural breast cancer survivors, and the potential selection and response biases in all three studies, represent the main limitations of this work. The cross-sectional design precludes causal inference about observed associations, but even characterising relevant correlates allows for adjustment of potential confounding and provides insight into factors that may be important in contributing to HRQoL among breast cancer survivors. Moreover, the potential impact of the latter limitations is in the conservative direction, whereby differences in HRQoL between groups will be more difficult to identify. Since these biases are expected to be present to a similar degree across all study groups, the absolute difference in HRQoL by residence and cancer status observed are likely to exist. In contrast, the work is supported by a population based, state-wide sample of breast cancer survivors, comparisons with the general population, and use of standardised instruments. Therefore, the conclusions derived from this research are likely to be generalisable to the wider population of women in Queensland with unilateral breast cancer, aged 74 years or younger, and perhaps to similar women in other western countries, depending on variations in healthcare systems and the provision of oncology services. This research supports the initial supposition that while some findings may generalise to all breast cancer survivors, non-urban breast cancer survivors also have distinct experiences that influence their HRQoL. Results from this work highlight the HRQoL domains and characteristics of breast cancer survivors most in need of assistance to facilitate recovery following diagnosis and treatment. Characteristics include some already established and reconfirmed here, namely, emotional wellbeing among younger women, and other novel subgroups, including regional/rural survivors who receive chemotherapy or have a low self-efficacy and all survivors, regardless of residence, with upper-body problems or a low perception of handling stress. These results demonstrate the potential for identifying subgroups of women with breast cancer at risk for low HRQoL who may benefit from additional attention and possible tailored recovery interventions to increase their overall HRQoL. As such, researchers and clinicians need to consider the role of these factors when designing interventions to assist women as they deal with the challenges imposed upon them by their breast cancer. However, it was found here that the FACT-G instrument has ceiling effects. This means that positive changes reflecting improved status, such as those achieved through recovery interventions, will often fail to be measured appropriately if there is no room to indicate improvements. Overall HRQoL results indicated that there is room for improvement past 12 months following treatment, with a significant proportion of breast cancer survivors reporting HRQoL below normative levels. HRQoL concerns 12 months following diagnosis are likely to be distinct from the more acute issues reported earlier on in the literature. Therefore, the development of a cancer survivorship module to accompany the FACT-G would be useful to counteract the ceiling effects observed as well as to capture issues distinct to cancer survivorship. This is the first study to describe in detail the HRQoL of breast cancer survivors across all areas of Queensland and to compare it to the HRQoL reported by the general population of Queensland. Therefore, it represents a unique and substantial contribution to the existing knowledge on survivorship issues following diagnosis and treatment for breast cancer in Australia. Through this research, a number of questions remain that could be addressed by relevant investigations and which are likely to be important in the future to ultimately guide practice. Specifically, implementation of the concept of HRQoL in practice is the next important step forward. Furthermore, the development of a survivorship care plan that incorporates guidelines on HRQoL recovery could provide options for referral and support.

Thesis (Ph.D.) -- University of Western Sydney, Nepean, 2001. / A thesis submitted in total fulfilment of the rquirement for the degree of Doctor of Philosophy, University of Western Sydney, Nepean, 2001. Bibliography : leaves 242-269.

Thesis (Ph.D.)--University of Western Australia, 2007.

Thesis (M. Sc.)--Carleton University, 2008. / Includes bibliographical references (p. 96-98). Also available in electronic format on the Internet.

Source: Dissertation Abstracts International, Volume: 70-01, Section: B, page: 0197. Adviser: James R. Langabeer, II. Includes bibliographical references.

Thesis (doctoral)--Lund University, 1997. / Added t.p. with thesis statement inserted. Includes bibliographical references.

Thesis (Ph.D.)--Xianggang Zhong wen da xue, 2001 / Zhi dao jiao shou: Mo Banghao. 880-03 Includes bibliographical references.

Thesis (doctoral)--Lund University, 1997. / Added t.p. with thesis statement inserted. Includes bibliographical references.

Thesis (Ph.D.)--University of Alberta, 2009. / A thesis submitted to the Faculty of Graduate Studies and Research in partial fulfillment of the requirements for the degree of Doctor of Philosophy in Epidemiology, Department of Public Health Sciences. Title from pdf file main screen (viewed on October 11, 2009). Includes bibliographical references.