The dreaded “C” word strikes fear in all of us. Cancer. The 2nd leading cause of death worldwide. We all know people impacted by this terrible disease. My family suffered greatly when our beloved teenage son died from a terminal brain tumor. Fortunately, doctors and scientists have made great strides in detecting and treating cancer, but there is still much potential for improvement. What do cancer patients think about the care they receive? What can hospitals, doctors and regulators do to improve cancer care? How can you improve the cancer care you or a loved one receive?

The All.Can patient survey on cancer care.

All.Can is a nonprofit organization dedicated to improving the delivery of care for cancer patients by focusing resources towards achieving outcomes that matter most to patients. Their 2018-19 survey on cancer care experiences was completed by almost 4,000 patients and family caregivers in 10+ countries.

The survey highlights where respondents noticed waste and inefficiency. In other words, occurrences of gaps in care. Importantly, I believe current and future patients can work towards improving their own cancer care experience by learning where gaps in care may develop.

Additionally, I believe patients and family caregivers dealing with other serious medical conditions can also benefit from the report’s findings.

The survey revealed four opportunities to improve cancer care.

Based on the survey responses, All.Can identified four key opportunities for improvement , as summarized below.

1. Patients want a swift, accurate and appropriately delivered diagnosis.

The biggest concern revealed in the survey related to the diagnosis process. Respondents’ concerns included:

Doctors who missed cancer symptoms.

Among those diagnosed outside of a screening program, 32% reported that their cancer was initially or repeatedly diagnosed as something else.

Delays in diagnosis. 

The analysis found that diagnostic delays varied by cancer type. For example, almost 80% of prostate cancer respondents said their cancer was diagnosed in less than a month. In contrast, only 25% of those with head and neck cancer report a diagnosis in less than a month.

How and when providers share a cancer diagnosis.

Some respondents stated their healthcare professionals lacked empathy when delivering the cancer diagnosis news. Others shared that healthcare providers failed to make sure patients are not alone when receiving a diagnosis. And some stated they wished providers would immediately give patients a point of contact for questions.

2. Patients want better information-sharing, support, and shared decision-making.

Too much information given at once.

Patients stated they were often overwhelmed by the volume of information received about their cancer. Similarly, some stated they would rather be given information at relevant points during their care, rather than being told everything at the point of diagnosis.

Exclusion from the decision-making process.

Only 53% of respondents reported feeling sufficiently involved in making decisions about their care. Moreover, 31% felt their healthcare providers did not provide adequate information about their cancer care and treatment in a way they could understand.

Lack of support for dealing with ongoing symptoms and side effects.

39% felt they had inadequate support to deal with ongoing symptoms and side effects. Additionally, 31% felt that they didn’t receive adequate support relating to pain management.

Lack of information on what to expect after active treatment.

35% felt inadequately informed about how to recognize if their cancer might be recurring or getting worse.

Lack of information on available peer support groups.

41% did not receive information from their care team about available peer-support groups.

Those with advanced care reported greater gaps.

Interestingly, those with advanced cancers reported being less involved in shared decision-making and having less information about their cancer care and treatment. Additionally, this group reported receiving less support in dealing with ongoing symptoms and side effects as compared to patients with earlier-stage cancers.

3. Patients want integrated and multidisciplinary care.

A lack of care coordination.

Many reported they felt a lack of care coordination. For example, some had no written care plan, or lacked a primary point of contact to whom they could ask questions.

Communication gaps between different doctors.

Although a lack of communication between different doctors can occur anywhere, the problems was more evident in countries with primary-care-led models, such as Australia, Canada, and the United Kingdom.

Lack of support from allied health professionals (dietitians, physiotherapists, etc.).

Many reported a lack of access to a multidisciplinary team. And 24% wanted to know how these different professionals could help them recover.

Palliative care availability lacking.

Many respondents stated their providers did not discuss palliative care. Unsurprisingly, most of those with access to comprehensive palliative care services reported great satisfaction with this aspect of care.

Lack of psychological support. 

69% of respondents said they needed psychological support during and/or after their treatment. However, of these, 34% said it was not available. Many respondents expressed concern about the impact of cancer on their families and wanted psychological support for them as well.

4. Patients worry about the financial burden of cancer.

The dramatic financial burden of cancer.

Many respondents shared they felt shocked by the financial impact of cancer. Interestingly, even in countries with publicly funded healthcare systems, respondents frequently reported paying for some of their cancer care themselves.

Expenses also include non-treatment costs and loss of income.

In addition to expenses directly related to cancer care, 36% reported expenses related to traveling for care. And 26% mentioned loss of employment income.

Moreover, family caregivers also experienced reduced work hours (and associated reduced income) due to the time demands of caregiving and/or increased childcare responsibilities. In some instances, people made huge sacrifices to pay for their care and associated travel.

The burden of cancer on work extends beyond active treatment periods.

Both patients and family caregivers often cope with work-related issues due to cancer, even long after the active phase of treatment.

Cancer can lead to lifelong financial problems.

For some patients and caregivers, the financial burden of cancer last for many years. For instance, patients and caregivers can struggle with productivity issues and out-of-pocket care expenses. Furthermore, some patients faced difficulty when trying to get a mortgage or affordable insurance due to a cancer diagnosis.

All.Can’s addresses gaps in cancer care.

All.Can believes healthcare leaders should use these patient insights to guide care and planning decisions and investments. Moreover, they believe that by doing so, it’s possible to achieve vast improvements across many outcomes, including patient experience, quality of life, cost of care, and in some cases – better overall survival.

All.Can recognizes that many of the gaps in care identified by patients are well-known, even in high-quality cancer care centers. Nonetheless, many patients still do not receive needed cancer care.

Fortunately, All.Can suggests that uncomplicated solutions can reduce inefficiencies and improve cancer care. Interestingly, many of these solutions are readily available but not consistently implemented.

All.Can’s suggestions for improving cancer care.

All.Can outlined suggestions for stakeholders to improve cancer care, including the following:

Implement effective strategies for rapid referral and accurate diagnosis.

Firstly, awareness campaigns about the signs and symptoms of cancer and national screening programs can reduce delays in diagnoses. Additionally, rapid referral and diagnosis pathways can greatly accelerate the speed of diagnosis and help detect cancer at an early stage when there are greater treatment options and a higher chance of survival.

Provide patients with easy-to-understand, appropriate information at relevant points along their care journey.

Easily understood, appropriate information helps patients feel more in control, increases overall care satisfaction, reduces anxiety and depression, creates realistic expectations of care and encourages engagement in care.

Additionally, satisfying patients’ needs for information is associated with improved symptom management, treatment adherence, clinical outcomes, and quality of life.

Use tools that facilitate positive doctor–patient communication and information exchange.

Doctors should use tools to improve communication between doctors and patients, including:

• Using question prompt lists.
• Allowing patient access to their medical records.
• Giving patients important information in writing.
• Allowing patients to record appointments.

Additionally, doctors should encourage patients to bring a loved one with them for appointments to help patients remember information related to the diagnosis, treatments, and patient care.

Involve patients in the decision-making for their care.

Research suggests that shared decision-making may improve patient outcomes.

Assign all cancer patients a key contact person. 

Having a key contact person, such as a cancer nurse specialist and/or care coordinator greatly helps patients navigate all stages of their care.

Support people to stay in work or return to work following cancer.

Helping people keep their jobs helps people maintain a stable income throughout their cancer journey and retain a sense of normalcy.

Governments, businesses, and nonprofit organizations can help cancer patients return to work. For example, Italy has a law allowing patients to switch from full-time to part-time work while undergoing treatment and then go back to full-time work as soon as they can.