- Respect for the values, preferences and expressed needs of patients;
- Coordination and integration;
- The provision of information, communication, and education;
- Ensuring physical comfort;
- The provision of emotional support and relieving fear and anxiety; and
- Involving family and friends in care (The Institute of Medicine, 2001).
With the incidence of cancer diagnoses continuing to increase in Australia, (Australian Institute of Health and Welfare, 2017) and the high burden cancer poses on the Australian community (Australian Government, 2017), it is essential to understand cancer care is experienced in a dynamic context characterised by rapid changes in technology. Therefore a significant need existed for supportive care and models of service delivery that are increasingly devolving from inpatient to ambulatory and home-based care (Queensland Health, 2010). There is also an increasing expectation that cancer patients have the knowledge and skills to self-manage their care (Vahdat et al., 2014). While the cost - and resource - shifting entailed in such developments could benefit cancer services, it does not necessarily reduce patient burden or improve their quality of life. A recent systematic review (Tzelepis et al., 2014) indicated that despite espousing the IOM ideals of patient-reporting, cancer facilities do not routinely assess patient-reported outcomes to evaluate the quality of the care they provide in this rapidly changing environment. As a result, the IOM argues that patients are dissatisfied with care and that patient-reported outcomes should be routinely used to evaluate and thereby enhance the quality of care provided. This impedes health services’ ability to redesign care in response to the cancer patient and family need (Tzelepis et al., 2014). In this study, the Patient Reported Outcomes – Cancer measure was tested in a cohort of cancer patients in preparation for further testing in larger national studies. The measure is explicitly designed to meet IOM recommendations in cancer care, and is the first time nationally or internationally such a measure has been developed.
This study therefore had the potential to develop a novel instrument that accurately reflected patient’s perceptions of their cancer care experiences and the quality and continuity of care across and within service providers. The PRO-C aimed to achieve this by explicitly meeting the psychometric standards for reliability and validity whist incorporating the six dimensions of care endorsed by the IOM (Institute of Medicine, 2001).
Methods: Face and content validity were established with 30 ambulatory cancer patients and 10 cancer clinicians in 2015. A sample of 430 ambulatory cancer patients was recruited in 2016. The PRO-C’s promising psychometric properties, determined through exploratory factor analysis and by establishing construct, convergent and divergent validity, were then further explored. The PRO-C was modified according to these results in July 2017.
Results: Preliminary results indicated that the PRO - C assumptions underpinning the domain structure are sound with the six domain α’s ranging from 0.73 to 0.8, and that 24 of the 28 domain-specific items fit the hypothetical model well. The four items that did not load in the exploratory factor analysis are being revised after seeking further patient opinion. In addition, all 28 items have been modified to reduce the original 1-10 range of responses to 1-5, and to delete the ‘not applicable’ option. This was done to significantly improve the robustness of the instrument.
Conclusion: The PRO-C is the first instrument to measure patient-reported outcomes in the cancer chemotherapy setting according to IOM recommendations. The next step in PRO-C development is to confirm instrument reliability. This proposed study will establish, through confirmatory factor analysis, the psychometric properties of the PRO-C with typical ambulatory cancer patients treated in Brisbane, Australia. This procedure will indicate the instrument’s local relevance, and its potential to guide interventions in cancer service redesign, irrespective of service context. This will enable responsive, timely service redesign. If the PRO - C proves reliable, it could be digitized and linked to patient records. Our existing international cancer research partners and research partners in all states of Australia will be involved in the next phase of the PRO - C program after it is trialed in Brisbane.
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