All.Can report reveals opportunities for Governments to ‘Do the right thing by patients’

By 24th July 2019 July 26th, 2019 IBTA News

New cancer report reveals opportunities for governments to ‘do the right thing by patients’

Findings from 10-country survey reveal inefficiencies in cancer care from patient perspective

The international All.Can cancer initiative, of which the International Brain Tumour Alliance (IBTA) is a founding member, has today (24 July 2019) published a major report urging health officials, governments and decision-makers to ‘do the right thing by patients’ when developing cancer care plans and policies by taking patient insights into account in all aspects of treatment and care.

Patient insights on cancer care: opportunities for improving efficiency highlights four major areas of cancer care inefficiency from the patient perspective. All.Can defines inefficiency in cancer care as anything that does not focus on what matters to patients.

Based on results from a large, international patient survey of nearly 4,000 people across ten countries affected by different cancers, including brain tumours, the report identifies four key areas for improvement based on patient insights:

  1. Ensuring a swift, accurate and appropriately delivered diagnosis
  • A quarter of the survey’s respondents (26%) stated their initial diagnosis was the most inefficient part of their cancer care journey.
  • Almost a third (32%) of respondents whose cancer was diagnosed outside of a screening programme said their cancer was diagnosed as something else – either once or multiple times.
  1. Improving information-sharing, support and shared decision-making 
  • Almost half (47%) of respondents did not feel sufficiently involved in deciding which treatment option was best for them.
  • 39% of respondents said that they were never, or only sometimes, given enough support to deal with any ongoing symptoms and side effects. 
  1. Making integrated multidisciplinary care a reality for all patients
  • Seven out of ten respondents (69%) said they needed psychological support either during or after their cancer care – but a third (34%) of them said it was ‘not available’.
  • A quarter of respondents (24%) said they did not have access to support from allied health professionals such as dietitians and physiotherapists.
  1. Addressing the financial implications of cancer
  • 26% of respondents reported a loss of employment income as a result of their cancer care and treatment.
  • 36% of respondents cited travel costs as a financial implication of their cancer care and treatment.

The authors of the report, including the IBTA, urge policymakers and the entire cancer community to act on these findings – as making these changes could make a real difference to patient outcomes and experiences of care, and the financial impact cancer has on patients, families, the health system and society as a whole.

This is supported by existing evidence: faster diagnosis can improve patient survival and is associated with reduced treatment costs for many cancers.[i] Shared decision-making is associated with improved patient outcomes.[ii] Cancer patients with depression have a 39% higher risk of mortality[iii] and higher healthcare expenditure than patients who do not have depression[iv] – pointing to the need for appropriate psychological support.

Lost productivity due to cancer is estimated to cost €52 billion per year in the European Union, due to early death and lost working days[v]  – and protective social policies that either help patients return to work or protect them from financial insecurity due to cancer can have a huge impact on reducing this burden.

According to the World Health Organization, at least 20% of all healthcare spending is thought to be wasted on inefficient treatment and care.[vi]

To download a full copy of the report, Patient insights on cancer care: opportunities for improving efficiency, visit: all-can.org

About the international All.Can patient survey:

The Patient insights on cancer care: opportunities for improving efficiency report is based on the findings from the All.Can patient survey. This is to our knowledge, the first international survey designed to gather patient perspectives on inefficiencies in cancer care i.e. how their care experience could be improved.

The data were collected from January to November 2018, predominantly online, and the survey was open to current and former cancer patients (and their carers) of all ages and with all cancer types.

The survey was conducted internationally, with bespoke versions in ten separate countries: Australia, Belgium, Canada, France, Italy, Poland, Spain, Sweden, the UK and the US. There was also a generic international survey available in English, French, German and Spanish.

The survey was developed by All.Can international and Quality Health, and was validated via expert review and testing with patients to ensure questions were understood and answered as intended. Quality Health is a survey provider based in the UK.

About All.Can international

All.Can is an international, multi-stakeholder initiative, dedicated to tackling inefficiency in cancer care – where inefficiency is defined as any allocation of resources that does not focus on what matters to patients. Its ambition is to help drive solutions for sustainable care for all those affected by cancer.

All.Can international's membership includes representatives from leading patient organisations, policymakers, healthcare professionals, research and industry. To find out more about the membership of All.Can, visit: https://www.all-can.org/about-us/members/.

The international All.Can initiative is made possible with financial support from Bristol-Myers Squibb (main sponsor), Roche (major sponsor), Amgen, MSD and Johnson & Johnson (sponsors), and Baxter (contributor), with additional non-financial (in kind) support from Helpsy, Intacare and Goings-On. For more information about All.Can, its full membership and governance, visit: http://www.all-can.org/

Healtheo360 video

https://www.healtheo360.com/stories/allcan-patient-survey/

This video was created by healtheo360 an online community network of over 30 million patients living with chronic, terminal and rare conditions, their caregivers and family members. See www.healtheo360.com.

References

[i] Birtwistle M. 2014. Saving lives, averting costs – an analysis of the financial implications of achieving earlier diagnosis of colorectal, lung and ovarian cancer. Available online

[ii] Kehl KL. 2015. Association of actual and preferred decision roles with patient-reported quality of care: shared decision making in cancer care. Available online

[iii] Smit H. 2015. Depression in cancer patients: Pathogenesis, implications and treatment (review). Available online

[iv] Pan X. 2015. Health care expenditures associated with depression in adults with cancer. Available online

[v] Luengo-Fernandez, R. 2013. Economic burden of cancer across the European Union: a population-based cost analysis. Available online

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