The experience of gynaecological cancer survivors : supportive care needs and use
Beesley, Vanessa Lea (2006) The experience of gynaecological cancer survivors : supportive care needs and use. PhD thesis, Queensland University of Technology.
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:
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.
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.
An evidenced-based physical activity intervention, targeting overweight and obese gynaecological cancer survivors is recommended, to reduce the weight issues of this population.
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.
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.
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.
Impact and interest:
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|Item Type:||QUT Thesis (PhD)|
|Supervisor:||Battistutta, Diana, Eakin, Elizabeth, Aitken, Joanne, & Dunn, Jeff|
|Keywords:||Lymphoedema, Service use, Survival phases|
|Divisions:||Current > QUT Faculties and Divisions > Faculty of Health|
Current > Schools > School of Public Health & Social Work
|Department:||Faculty of Health|
|Institution:||Queensland University of Technology|
|Copyright Owner:||Copyright Vanessa Lea Beesley|
|Deposited On:||03 Dec 2008 14:01|
|Last Modified:||29 Oct 2011 05:46|
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