Typescript (photocopy) / 172 leaves : ill. ; 30 cm. / Title page, contents and abstract only. The complete thesis in print form is available from the University Library. / Thesis (Ph.D.)--University of Adelaide, Dept. of Zoology, 1982

Thesis (Ph.D.)--University of Adelaide, Dept. of Zoology, 1982. / Typescript (photocopy).

Gynaecological cancer survivorship has been addressed in only a limited body of research. After completion of treatment, women with gynaecological cancer face many challenges. It is pertinent that we understand the wellbeing and morbidity issues of this group of survivors, as well as their supportive care needs and use. With this understanding, it will be possible to better target health care initiatives and services to those gynaecological cancer survivors who require help. Accordingly, the objectives of this study were to determine the prevalence of site-specific morbidities, support being utilised, and unmet needs, as well as to determine the correlates of supportive care needs and use. To address this, a cross-sectional mail survey of 1774 Queensland gynaecological cancer survivors three months to five years post-diagnosis was conducted in 2004 (56.5% response rate, n=802 of 1420 eligible participants). Women were recruited from the Queensland Gynaecological Cancer Registry, which covered approximately 85% of all gynaecological cancer patients in Queensland at the time of this study. The questionnaire measured a range of factors to reflect a social-ecological perspective. This broader perspective was utilised to extend the current understanding which is limited to a biopsychosocial approach. Main outcomes were measured with standardised and validated instruments where possible, including the Supportive Care Needs Survey, Functional Assessment of Cancer Therapy, Duke-UNC Functional Social Support Questionnaire and the Active Australia Survey. The results of this survey showed that while quality of life was high on average (median 91, range 30-108), some women experienced debilitating site-specific conditions. Ten percent reported being diagnosed with lower limb lymphoedema and eight percent of women reported that their gynaecological cancer had made sexual relations too difficult or too uncomfortable. Women accessed multiple sources of support within their communities including a variety of support services (54%) and complementary therapies (29%). Characteristics associated with use of support services include: younger age, being retired, having been diagnosed with a gynaecological cancer other than uterine, having had open bowel resection, having been treated at multiple centres, being in remission, being obese. On average, women reported having excellent social support (median 37, range 8-40). Some women made changes to healthier behaviours following their cancer diagnosis, such as increasing their fruit and vegetable intake (23%) or physical activity levels (10%) or decreasing their alcohol consumption (24%) or cigarette smoking (10%); however, nearly half (44%) of women decreased their physical activity level. A population comparison of health behaviours between gynaecological cancer survivors and Queensland women highlighted the significantly lower level of sufficient physical activity and higher level of obesity in the cancer survivor population, as well as the low levels of adequate vegetable intake in both populations. Forty-three percent of gynaecological cancer survivors reported having at least one moderate or high level unmet supportive care need. In particular, needing help with fear about the cancer spreading, concerns about the worries of those close to them, uncertainty about the future, lack of energy/tiredness, and not being able to do things they used to do, were most important to this group. These leading need items were all within the psychological and physical/daily living supportive care domains. Some unmet sexuality and health system/information needs were also reported. Groups with higher odds of unmet needs included those women who more recently completed treatment, whose disease was still present, who had children still living in the home, who had diagnosed lymphoedema, who experienced treatment-related menopause, who were unable to work due to illness and who lived in rural and remote regions of Queensland. These results indicate that women with gynaecological cancer in Queensland are doing quite well overall; however, there is still room for improvement in a few key areas of public health importance. In line with the social-ecological model, resources need to be targeted at all levels of support including personal, social, health care and broader organisational, community, policy and media levels. In particular, the following recommendations are made: 1. Assistance with the particular reported unmet psychological and physical/daily living needs is a priority. Support services should be tailored to the identified groups of survivors who had higher odds of unmet needs, both in terms of development of written materials that reflect these groups' circumstances and implementation of programs or workshops specific to these groups. In particular, the development of a number of programs or workshops are recommended that discuss the specific psychological and physical/ daily living outcomes of women who a) live with cancer, b) live with children after cancer treatment, c) live with lymphoedema, d) have had treatment-related menopause or e) are unable to work due to illness, and how and where women can get help with managing these. These programs should be implemented by support organisations in the period closely following treatment completion and should consider technologies such as video-conferencing to reach women who are in rural and remote areas. 2. More specific written information for cancer survivors about things they can do to help themselves get well is needed, in lay-person friendly format. This information should address the value of particular dietary items, complementary therapies and types of physical activities that are safe and beneficial to cancer survivors' quality of life. 3. An evidenced-based physical activity intervention, targeting overweight and obese gynaecological cancer survivors is recommended, to reduce the weight issues of this population. 4. To facilitate the triage of cancer survivors to appropriate health care information and other support initiatives, cancer survivors' awareness of the Queensland Cancer Fund needs to be raised substantially. Practitioner education and discharge planning directives are recommended to ensure information about the Queensland Cancer Fund is disseminated. 5. To address the substantially unmet information and physical/ daily living needs specific to lymphoedema sufferers, it is recommended that self-management information and referral information for suppliers and services for lymphoedema management be given to women in high lymphoedema risk groups, as part of the hospital discharge procedure, as well as when symptoms are diagnosed, to ensure a continuum of care is maintained. 6. Clinical practice guidelines for cancer care and, correspondingly, support programs, need to expand from acute care to managing the long-term psychological, physical and sexual health consequences. Several topics for research are likely to be important in the future, including more specific research into why uterine cancer survivors reported higher odds of unmet psychological needs and yet were less likely to use support services, what specific help women with unmet needs would prefer, the effects of lower limb lymphoedema on survivors' quality of life, and why there isn't greater use of existing support services, especially among women with morbidity such as lymphoedema and issues associated with treatment-related menopause.

Secondary lymphoedema and venous oedema of the limb are the consequence of an imbalance between tissue fluid infiltrate and drainage, which leads to interstitial fluid accumulation, tissue changes, limb discomfort and morbidity. Numerous conservative therapies have been developed to address some of these negative outcomes, with a proportion of these being labour and cost intensive. This makes the investigation of cost effective and easy to implement home based regimes very important. One such therapy is limb exercise, which can be beneficial for limb oedemas through changes in both interstitial pressure and calf muscle activation. Therefore, this thesis explored the benefits of different exercise regimes for limb oedema of both lymphatic and vascular origin. This was achieved through a systematic review of existing conservative therapies for limb oedemas and four clinical trials investigating the benefits of home based exercise regimes. Results demonstrated that various positive and significant outcomes could be gained from the implementation of such regimes, including improvements in both subjective and objective parameters. These results reveal how these chronic and disabling conditions can be maintained by the patient in the home environment in between health care visits. It also demonstrates how self maintenance may alleviate the burden on the health care system.

No / Activa Healthcare

No / Lymphoedema secondary to cancer is a relatively neglected and under-researched condition. Few studies report people's experiences of care and treatment provision when living with the condition. Current practice focuses on the physical treatment yet psychosocial needs often remain unmet. A previous study examining the patient perspective identified the theme of being 'abandoned by medicine'. Perceived lack of support may result in a delayed adaptation and acceptance of this long-term condition and can significantly impact on psychological well-being. We explore this emerging theme alongside others in order to provide a guide to action for improvements for patient benefit. The central aim was to explore women's views of their care and treatment following a diagnosis with lymphoedema secondary to cancer. This forms part of a larger study aimed at assessing appropriate screening tools to measure psychosocial distress. Methods: A mixed-methods approach was used for the main study. Here we report the qualitative component, derived from in-depth semi-structured interviews conducted in the homes of the participants (n = 14) and focus group discussions (n = 15). In addition, qualitative comments from questionnaire data from a large-scale postal survey are included (n = 104). Findings: Participants identified considerable deficiencies in health care workers' knowledge and awareness of lymphoedema, which subsequently impacted on the patients' needs for information, support and understanding. Access to appropriate treatment was patchy and problems were identified with the process of obtaining compression garments, massage and other sources of help. Although lymphoedema is a long-term disfiguring condition, and much is known about how this impacts on patients' emotional well-being, little attention was paid by health professionals to potential psychosocial consequences. In essence women had to become experts of their own condition and cope as best as they could. We provide recommendations to improve service delivery and address these unmet needs.

Magister Curationis - MCur / In this minithesis a systematic review of all of the available contemporary literature on post-breast cancer lymphoedema was undertaken. The purpose of this systematic review was to search for, collate, synthesize and thereby provide the reader with a comprehensive, evidence-based account of all the available research published between 1988 and 2008 on the treatment of post-breast cancer lymphoedema with natural medicine.Because the large number of articles published every year across a plethora of biomedical journals makes it incredibly difficult for practitioners to keep up-to-date within their specialized areas, systematic reviews are particularly useful as they summarize high quality, contemporary scientific knowledge on a topic in one place (Antman, Lau, Kupelnik, Mosteller & Chalmers, 1992). One such topic on which many health practitioners have a paucity of information regarding management and risk reduction is lymphoedema (Radina, Armer, Culbertson & Dusold,2004) The primary objective of this research project was to assess the effects of natural medicine on post-breast cancer lymphoedema in regard to 1) life style improvement including any signs and symptoms related to the condition such as heaviness, tightness, pain, ache, itch, mobility of the affected arm, skin texture as well as psychological symptoms like distress;2) arm volume changes of the affected limb; 3) adverse effects; and 4) modification or cessation of treatment.Several online databases were searched for articles that contain the term lymphoedema, lymphedema, limb swelling or "linfedema" (Spanish and Portuguese); thereby including all possible spellings in English, Spanish and Portuguese. Relevant information was extracted and recorded in tabular format. The quality of each study was analysed using a checklist,which was drawn up by the primary researcher and study supervisor based on the CONSORT guidelines (Altman, 1996).To ensure quality, only randomized controlled trials, quasi-randomized controlled trials or clinical trials that met the inclusion or exclusion criteria, reporting benefits or adverse effects of natural medicines for the treatment of post-breast cancer lymphoedema were included. In addition,studies had to focus on natural medicine versus placebo or routine treatment or no treatment as types of intervention; and participants had to include women of all ages that had been diagnosed with post-breast cancer lymphoedema.The relevant data from included studies was entered into Review Manager 5 (Revman 5) software for meta-analysis. The primary studies included in this systematic review generally suffered from small sample sizes, varied somewhat in their operationalisation of outcomes and the format for presenting results, making meta-analysis very difficult. However, results suggest that sodium selenite taken orally and CYCLO 3 FORT also taken orally are effective in the reduction of limb volume. The results also suggested that aromatherapy using an intervention cream containing wheat germ oil and essential oils of fennel, sage, geranium, black pepper and juniper; and vitamin E plus pentoxifylline taken orally are not effective.Seeing as these results are drawn from single studies with heterogeneous outcome variables, they should be seen as tentative until they are confirmed by replication. Gaps in the literature regarding natural medicine as a treatment for post-breast cancer lymphoedema were identified, and recommendations for further research are proposed.

Lymphoedema is a chronic health condition characterized by the accumulation of lymphatic fluid in the subcutaneous tissues resulting in arm swelling and can significantly affect physical and psychological health and QOL. Although significant research on lymphoedema has developed over the past decade, the literature reveals that there are gaps in knowledge on framing the illness, communication, and effective practices to improve the QOL for individuals living with lymphoedema. This research contributes to this growing field of research through a qualitative investigation of twelve women's reported understandings, experiences, and perceptions of lymphoedema using Brown’s (1995) theory of framing disease and illness. Semi-structured interviews were conducted with women living with lymphoedema to determine the impact of health messaging, to explore the ways in which these women made sense of conflicting messages on exercise, and to better understand how barriers to the effective adoption and integration of good management practices can be overcome.

Lymphoedema is a chronic health condition characterized by the accumulation of lymphatic fluid in the subcutaneous tissues resulting in arm swelling and can significantly affect physical and psychological health and QOL. Although significant research on lymphoedema has developed over the past decade, the literature reveals that there are gaps in knowledge on framing the illness, communication, and effective practices to improve the QOL for individuals living with lymphoedema. This research contributes to this growing field of research through a qualitative investigation of twelve women's reported understandings, experiences, and perceptions of lymphoedema using Brown’s (1995) theory of framing disease and illness. Semi-structured interviews were conducted with women living with lymphoedema to determine the impact of health messaging, to explore the ways in which these women made sense of conflicting messages on exercise, and to better understand how barriers to the effective adoption and integration of good management practices can be overcome.

Lymphoedema is a chronic health condition characterized by the accumulation of lymphatic fluid in the subcutaneous tissues resulting in arm swelling and can significantly affect physical and psychological health and QOL. Although significant research on lymphoedema has developed over the past decade, the literature reveals that there are gaps in knowledge on framing the illness, communication, and effective practices to improve the QOL for individuals living with lymphoedema. This research contributes to this growing field of research through a qualitative investigation of twelve women's reported understandings, experiences, and perceptions of lymphoedema using Brown’s (1995) theory of framing disease and illness. Semi-structured interviews were conducted with women living with lymphoedema to determine the impact of health messaging, to explore the ways in which these women made sense of conflicting messages on exercise, and to better understand how barriers to the effective adoption and integration of good management practices can be overcome.