Abstract:
A moderate literature has addressed gynaecologic cancer but survivorship after active treatment finishes has received less attention. During diagnosis and treatment, women with gynaecologic cancer face many challenges and problems. These persist, or new problems emerge, long after treatment ceases. It is important that we understand the supportive care needs (i.e. psychosocial and rehabilitative needs) and the factors that facilitate and inhibit use of health services to meet these needs. This will inform targeting and delivery of services and initiatives to women with gynaecologic cancer, and in particular, to survivors. Very little research has assessed both supportive care needs and use of health services to meet those needs, and use has been confined to community support services. Restricting assessment to community support services reflects a narrow perspective of women's actual or preferred use of services. Inclusion of supportive care provided by medical professionals will provide a more complete description. No published New Zealand studies have directly assessed needs in gynaecologic cancer. Also, at study planning, no research had assessed service use in this population. Accordingly, the principal objectives of this project were to determine the meaning of support for women and services used for supportive care, their unmet needs, and correlates and predictors of needs and service use. To address this, the current health services project was framed within a broad biopsychosocial perspective. Contiguous and sequential cross-sectional qualitative and quantitative studies were conducted with women living with gynaecologic cancer who were five years or less from diagnosis of a first instance or recurrence. Samples for the two phases were from the same source: women who were treated by, or had their cases reviewed by, the Auckland Northern regional gynaecology oncology service, based at National Women‟s ADHB. The qualitative phase, (54% response rate, n=28 of 52 women approached) was conducted in the six months beginning late 2004, and employed purposive sampling for adequate representation of important groups (i.e. age, ethnicity, cancer type, time since diagnosis, cancer recurrence). Women were recruited during scheduled hospital outpatient clinics. The purpose was to determine women's needs for supportive care, the meaning of supportive care and the extent to which they felt needs were met by existing health services. Thematic analysis of unstructured interviews revealed three interconnected themes. 'Sense of control' and 'validation of experience' reflected women's motivations for support from health services, while 'organisation of care' addressed delivery of supportive care. The overarching finding was that a patient-focused, comprehensive and integrated approach to supportive care across the cancer continuum (diagnosis, treatment, post-treatment, cancer recurrence should this occur) is necessary. While most needs were met during treatment, the transition to survivorship was difficult, and many needs were unmet after treatment ceased. Problems with continuity and coordination of care were evident. For that reason the focus of the quantitative phase was on survivorship. A postal survey was conducted in 2008 to assess survivors' supportive care needs in multiple domains, and determine correlates and predictors of need and service use. Women were recruited via patient records (59% response rate, n=343 of 581 eligible participants). The questionnaire was informed by the qualitative phase of this project and the cancer literature. Main outcomes were unmet needs and service use. Review of existing needs assessment tools revealed potential deficiencies in application to gynaecologic cancer survivors. Therefore, tools to assess needs and service use were developed for the survey. Survey results showed that, when aggregated, nearly half (49%) of all gynaecologic cancer survivors reported at least one currently unmet need, and many had unmet need in more than one domain. Reported frequency by individual items was considerably lower; the top 10 items being endorsed by 13-24% of survivors. The top five unmet needs were: fears of cancer recurrence, being informed about support services, feeling anxious or stressed, being informed about health promoting behaviours, and fatigue. Most of these items fell in the emotional and information/services domains of need, except for fatigue (physical/daily living). Some unmet sexuality/reproductive needs also featured in the top ten unmet needs. Groups at greater risk of unmet need included those who: had poorer emotional wellbeing, were younger, were more recently diagnosed, experienced treatment-related menopause, had a poorer prognosis, and perceived that their financial status had worsened since cancer. Women may also be at greater risk if they belong to an ethnic minority (indigenous Maori; Pacific Island and other groups). Results also showed that survivors used multiple sources of support: 66% used at least one healthcare service (i.e. medical professionals) for supportive care, and 43% used at least one community support service. In addition, 27% of women used complementary therapies and most women reported support from their informal support network. Characteristics predicting use of medical professionals for supportive care included closer proximity to diagnosis, poorer mental wellbeing, poorer prognosis, being well educated and having health insurance. Similar characteristics, except for mental wellbeing, predicted use of community services. Women were also more likely to use community support services if they were younger but less likely if they belonged to an ethnic minority group. Findings for service use and unmet needs mirrored those expressed by interview participants, as did evidence of barriers. Overwhelmingly the main barrier to use of community support services was survivors' awareness of services or perceived availability of services after cancer. Problems with continuity and coordination of care, and geographic factors (timing/place of services) were the most frequent barriers to using healthcare services for supportive care, or using them as much as survivors needed to. Interview data provided tentative evidence of additional barriers faced by ethnic and sexual minority groups (i.e. cultural norms, perceived discrimination). Overall, the results suggest that New Zealand women who receive care from, or have their cases reviewed by, the Auckland Northern regional gynaecology oncology service are doing quite well. But there is room for improvement in key areas of public health importance. In line with a broad biopsychosocial framework, resources need to be targeted at all levels of support including personal, social, health services, and organisational and policy levels..