A major challenge in value-based health care is the lack of standardized health outcomes measurements, hindering optimal monitoring and comparison of the quality of health care across different settings globally. The International Consortium for Health Outcomes Measurement (ICHOM) assembled a multidisciplinary international working group, comprised of 26 health care providers and patient advocates, to develop a standard set of value-based patient-centered outcomes for breast cancer (BC). The working group convened via 8 teleconferences and completed a follow-up survey after each meeting. A modified 2-round Delphi method was used to achieve consensus on the outcomes and case-mix variables to be included. Patient focus group meetings (8 early or metastatic BC patients) and online anonymized surveys of 1225 multinational BC patients and survivors were also conducted to obtain patients' input. The standard set encompasses survival and cancer control, and disutility of care (eg, acute treatment complications) outcomes, to be collected through administrative data and/or clinical records. A combination of multiple patient-reported outcomes measurement (PROM) tools is recommended to capture long-term degree of health outcomes. Selected case-mix factors were recommended to be collected at baseline. The ICHOM will endeavor to achieve wide buy-in of this set and facilitate its implementation in routine clinical practice in various settings and institutions worldwide.
Psychoeducational interventions, including relaxation, seem to alleviate hot flashes in menopausal women and breast cancer survivors; however, the methodological quality of published research is either fair or poor. More studies are required, especially in the breast cancer population where only a few studies are available, before psychoeducational interventions are offered as a treatment option.
Health ICT is rapidly gaining popularity among policy makers and health consumers. Specific platforms for use in cancer care are missing.
Aim:
The aim of this pilot study was to: 1) test the feasibility, functionality and usability of a patient-led cancer care web platform: CanCare, in a sample of people undergoing cancer treatment and 2) ascertain if CanCare could enhance communication between patients, family, friends and health professionals.
Methods:
Cancer patients receiving chemotherapy were invited to participate. Data were collected via semi-structured interviews, online surveys and a website usage program.
Results:
Nine patients with four different types of cancer completed the study. All saw the potential of the website but many found it too complex to use, particularly when unwell post treatment. Many were frustrated by the lack of integration with existing hospital systems and the need to enter relevant data manually. The cancer-specific information tab rated highly and was used extensively. The website used alone did not promote interactions between family and/or health professionals.
Conclusion:
A patient-led cancer care website has the potential to help patients manage their cancer care but needs to be intuitive to use, integrated into hospital systems and requires significant family/carer and health professional engagement.
The role of the internet, and in particular e-health, in chronic illness is a burgeoning phenomenon but its use to date in cancer care is somewhat limited. In this study an iterative consultative process was undertaken with the aim to develop a cancer care website that was patient-led, facilitated cancer self-management and had the potential to improve communication between patients, family and friends and health care professionals. The process involved multiple demonstrations of an already established base platform (SeeCare ß ) to potential end users (patients, family members and friends and health professionals) to identify required functions of a cancer care specific platform. An exhaustive list of specifications was prioritised and operationalised resulting in a web platform for people affected by cancer that was ready for testing in the clinical setting: CanCare.
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