Dr Penny Schofield
University of Melbourne
$116,300 (total funding $232,600)
Priority-driven Collaborative Cancer Research Scheme (PdCCRS)
Project completion year
Radiotherapy is a common treatment for gynaecological cancer (GC) and has many distressing side-effects, including diarrhoea, abdominal cramps, bladder dysfunction, menopause, infertility and sexual dysfunction, which impact on psychosocial functioning and intimate relationships. Indeed, over 50 per cent of women report anxiety before starting treatment and about 40 per cent remain anxious at completion. Anxiety can be ameliorated by comprehensive preparation for treatment and addressing the woman’s informational, physical and psychosocial needs during treatment.
Optimal health care involves not only the technical or disease management aspects, but also meeting the needs of the patient in the psychosocial, supportive care and informational domains, especially in cancer care. It is critical that people with cancer are offered comprehensive, high quality health care which increases the likelihood of treatment adherence, service satisfaction and positive psychosocial outcomes. Greater coordination of care and appropriate involvement of multidisciplinary (MD) expertise may achieve these objectives. Some researchers use the MD term to refer to care involving different specialities within medicine such as radiation, surgical and medical oncology, and others use the term to refer to care involving a range of disciplines such as medicine, nursing, chaplaincy, social work, psychology and physiotherapy. The researchers adopt and extend the latter definition, by proposing that the unique insights and support offered by peers (survivors of gynaecological cancer at least two years post treatment) should be considered a component of multidisciplinary care.
This study used a rigorous research design to test the effectiveness of an innovative approach to improve the coordination of care by combining tailored specialist nursing consultations with peer support to improve preparation for treatment, facilitate multidisciplinary referrals , enhance access to information from health professionals, provide empathy and emotional support and encourage adherence to rehabilitation and eight self-care strategies.
- is patient-centred by eliciting individual needs and opinions to direct patient personal health care plan
- provides appropriate multidisciplinary referrals and tailored information to patients and their significant others
- provides holistic care coordination by a specialist nurse to address the multifaceted physical, psychosocial and sexual needs of this patient group and their significant others efficiently at critical points in the illness trajectory
- provides instruction in evidence based self-care, including psychosexual rehabilitation and stress reduction strategies to assist women to actively achieve optimal health status, and
- is cost-effective because the engagement of peers means minimal, if any, additional nursing time thus increasing the likelihood of sustainability. This intervention package is likely to result in improved psychological and physical wellbeing, which are recognised as critical clinical outcomes.
Importantly, the intervention addresses several key recommendations made as a result of the 2006 senate inquiry on gynaecological cancers. The core principle of the intervention is delivery of tailored, evidence based information to meet the needs of women undergoing treatment with the Centre for Gynaecological Cancers used as a key resource (recommendations 2.55; 6.106; 6.107). Moreover, the intervention is accessible to women from rural and remote areas because it comprises components delivered at time of treatment, telephone based peer support and information (recommendations 4.188).
Expert training is provided (recommendation 4.195) to specialist nurses in identifying needs and negotiation an appropriate care plan with the woman (recommendation 5.103).
A central component of this training is in psychosexual counselling (recommendations 4.187) by an expert in the area.
Outcomes and impact
This PdCCRS-funded research has resulted in the development and initial testing of an evidence-based intervention which combines tailored specialist nursing consultations with peer support. It is innovative in that the intervention:
a. engages peers which means minimal, if any, additional nursing time for greater sustainability
b. encourages adherence to professionally delivered information, particularly vaginal cylinder use, via these peers
c. employs phone contact to provide equitable access to support services to the geographically or medically isolated
d. level 1 evidence on preparing patients for threatening medical procedures is applied to the radiotherapy context.
The intervention development phase was based on the well-regarded MRC Framework (2008) for the development of complex interventions, comprising a number of methodologies: literature reviews for best-evidence, consumer consultation and collaboration, clinical expertise, iterative review, and importantly, pre-testing the intervention with real patients, in the actual clinical setting.
This research program embodied a practical application of the NHMRC guidelines for consumer and community participation in health and medical research demonstrated by our genuine consumer-researcher-clinician partnership. The results from this intensive phase were overwhelmingly positive, with participants finding the program acceptable, relevant, useful and clinically feasible.
The methodologically rigorous design also involved the production of comprehensive materials and processes of peer selection, training and monitoring, with similar resources and programs for nurses. Pre-testing ensured that the intervention was feasible in a real-world clinical setting, so it could be easily adopted as best-practice care if effective.
It has also produced a workforce of peers and nurses trained in the delivery of the intervention. Critically, the program was designed so that it is potentially transferable to a range of treatment settings and types of diseases, such as diabetes or cardiovascular disease, across Australia. If this intervention is successful and widely disseminated, it has the potential to substantially reduce the physical, psychosexual and supportive care needs of women with GC.