Psychological support ‘not available’ to one in three cancer patients who need it
Findings from 10-country survey reveal lack of information and support
Credit: All.Can International
London, 24 July 2019 – People with cancer have trouble accessing appropriate psychological support, a new global report published today by the All.Can international cancer initiative reveals.
Patient insights on cancer care: opportunities for improving efficiency reveals findings from the international All.Can patient survey, in which seven out of ten respondents (69%) said they needed psychological support either during or after their cancer care. But a third (34%) of those who needed it said it was ‘not available’.
In addition, two in five respondents (41%) said they were not given any information by their care team about patient advocacy groups, charities or other organisations which could support them.
“Mental distress is common among cancer patients and can result in difficulty processing information, regretting decisions about treatment choices, and fear of their cancer coming back,” said Alex Filicevas, Head of EU Affairs the European Cancer Patient Coalition. “However, this new research highlights that the psychological and emotional aspects of cancer care are sadly often forgotten in cancer care.”
The survey found that even when psychological support was available, it was not always felt to be appropriate or helpful by respondents. This may reflect a lack of specialist support services for cancer patients. According to the International Psycho-Oncology Society (IPOS), there are significant gaps in provision of psycho-oncology services across Europe: 40-60% of cancer patients and family members experience psychological distress that could benefit from appropriate intervention, but only a minority receive psychological support and care.
Dr Matti Aapro, from the Genolier Cancer Center and member of the All.Can international steering committee said: “Psychological support is now recognised as an essential component of quality multidisciplinary cancer care and should be available to all cancer patients. Unfortunately, this often does not happen in practice – this is an important gap that needs to be filled.”
In addition to lack of psychological support, the All.Can report – based on results from a large international patient survey comprising nearly 4,000 people, affected by different cancers, across 10 countries – identifies four key opportunities for future efficiency improvements based on patient insights:
- 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.
- 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.
- 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.
- 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 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. Shared decision-making is associated with improved patient outcomes. Cancer patients with depression have a 39% higher risk of mortality, higher healthcare utilisation, and higher healthcare expenditure than patients who do not have depression – 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 – 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.
“It is so important that, as physicians, we listen to what patients are telling us in this survey,” said All.Can international member Christobel Saunders, breast cancer surgeon and Professor of Surgical Oncology at the University of Western Australia. “Each of the areas identified represents an opportunity to improve cancer care for patients and provide truly patient-driven care.”
According to the World Health Organization, at least 20% of all healthcare spending is thought to be wasted on inefficient treatment and care.
To download a full copy of the report, Patient insights on cancer care: opportunities for improving efficiency, visit: all-can.org
Note to editors
Every year, 9.6 million people die from cancer worldwide and 17 million new cases are diagnosed.
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:/
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://bit.
For further information, please contact: Henry Arnold, All.Can Secretariat
Tel: +4420 3857 3646
Mob: +4477 0822 0932