Research projects

Blood cancer survivors and support persons: A national survey of rural/urban unmet needs and psychological disturbance

Principal researchers

Professor Robert Sanson-Fisher

Institution

University of Newcastle

Funding

$259,419 from beyondblue – Total funding $518,838

Co-funded with

Cancer Australia

Award type

Priority-driven Collaborative Cancer Research Scheme (PdCCRS)

Project completion year

2012

Project brief

With increased survival rates for cancer, increased longevity, and the ageing of the population in Australia, the number of cancer survivors is growing. Research attests to significant unmet needs and psychological disturbance, not only for cancer survivors but also their support persons.

Just over one third (34 per cent) of Australians live in regional and remote areas, with some evidence suggesting survivorship problems may be more severe for people living in rural areas. A small but growing group of survivors who are particularly disadvantaged by lack of access to treatment and support are people with cancers of the blood (e.g. leukaemia, lymphoma and myeloma). A comparison of unmet needs and psychological disturbance among rural versus urban blood cancer patients would allow organisations such as the Leukaemia Foundation to identify groups most in need, allocate resources to meet those needs and advocate for change.

Aims and hypotheses

  1. To compare the level of unmet needs and psychological disturbance in rural and urban blood cancer within three years of diagnosis and that of their principal support persons, using a cross-sectional national sample of blood cancer survivors recruited via state cancer registries.
  2. To identify which socio-demographic, disease, treatment and access to care factors are associated with moderate and high levels of unmet needs and psychological disturbance for blood cancer survivors and their principal support persons.

It is hypothesised that there will be statistically significant differences between urban and rural cancer survivors in unmet needs and psychological disturbance, and between urban and rural support persons in unmet needs and psychological disturbance. It is also hypothesised that there will be differences in these outcomes according to other factors, such as time since diagnosis and intensity of treatment.

Research design

A cross-sectional study using a stratified random sample of blood cancer patients (half from rural and half from urban areas) will be selected via state cancer registries.

Adult rural and urban blood cancer survivors diagnosed with leukaemia, lymphomas and myeloma will be selected by state cancer registries and cross-matched with the deaths data.

Following clinician and participant consent, the cancer registries will provide participant contact details to the Leukaemia Foundation that will send information and questionnaire packages to potential participants. Participants (n=750 rural and 750 urban) will also be asked to nominate their principal support person and pass on a letter and questionnaire package to that person.

The questionnaire for cancer survivors will contain the Survivor Unmet Needs Survey (SUNS) and two valid measures of psychological disturbance (the Distress Thermometer and the DASS-21). The questionnaire for principal support persons will contain an unmet needs measure for the Support Persons' Unmet Needs Measure (SPUNS) and the DASS-21. Both the SUNS & SPUNS have been rigorously developed and validated with survivor and support person populations in Canada. Tests will be analysed to detect any differences in unmet needs and psychological disturbance between cancer survivors in urban and rural communities and between principal support persons in urban and rural communities.

Multiple linear regression analyses will be used to identify whether the hypothesised factors (greater time since diagnosis, more intensive treatment and reduced access to treatment) are associated with higher unmet needs, greater distress, higher anxiety and depression.

Significance and outcomes

This study addresses the lack of data regarding the unmet needs of rural and urban blood cancer survivors through provision of nationally representative data using the strongest available measures of unmet needs for both survivors and support persons.

The involvement of the Leukaemia Foundation will maximise the national representativeness of the sample, increase the likelihood that the study findings will be quickly implemented and ensure ongoing significant consumer involvement. The identification of disparities in the needs of rural and urban cancer survivors and their support persons, can serve as a platform for the development of further research into survivors' wellbeing. Therefore, the study has the potential to directly lead to improvements in health for blood cancer survivors.