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Karin Eichele

Novartis Pharma GmbH

[email protected]

Communication needs of cancer patients

Cancer patients have a need to access easily understandable information about the disease, treatments, side effects, and outcomes as quickly as possible. This article reviews the many facets of the special and changing communication requirements of oncology patients and provides some relevant ULRs.

Why the need for secondary resources, you might ask. Aren't these patients getting the information they need from their doctors? Some are not, and there are several possible explanations for this. Research has shown that while some patients are willing to trust in their physician's knowledge and therefore are unlikely to seek out extra information, others are reluctant to take up too much of a doctor's time, aware of the limited time they then have for other patients.^1,2 If cancer patients do not get the answers they want from their doctor's surgery, the Internet is an obvious port of call but the information they find there might not be easily understandable. One study, for example, found that ‘information regarding breast cancer prevention obtained from the National Cancer Institute's web site is written at far too high of a level’.³

A study conducted among 269 cancer patients in the UK in the mid-1990s found that 79% of them wanted as much information as possible.⁴ However, particularly in the case of cancer, all issues stemming from an accurately conveyed and understood diagnosis may be difficult to correctly identify, particularly as some doctors do not reveal the actual diagnosis to the patient – ‘in many cases even when the patient asked to be told the truth’.⁵ An online survey of cancer patients conducted in Israel in November 2011 found that 35% defined the information they received from their doctors about their disease and possible treatments as insufficient, 28% regarded it as incomplete, and 21% said it was unclear.⁶

In the UK, the NHS Cancer Plan (2000)⁷ sets out the importance of cancer patients having access to high-quality, accurate information, whereas in the US, the National Comprehensive Cancer Network (NCCN), which provides clinical practice guidelines for physicians, has recently created patient-friendly versions to provide state of the art cancer treatment information in easy-to-understand language. The rationale is to help patients with cancer speak with their treating oncologist about their best treatment options (see box).

It is also important to realize that cancer patients are not a homogeneous group. Research has shown that their information needs are fluid, liable to change as their disease progresses. Various studies have found that patients at certain times during their treatment avoided potentially negative information as part of a coping mechanism.^1,8

With better prevention, early diagnostics, and ever-improving treatments, more patients survive and new issues concerning them have surfaced, making the survivor another important stakeholder in the field of cancer communication.

Originally the term ‘cancer survivor’ referred to family members who had lost a loved one to the disease. However, by the 1960s physicians began to refer to ‘cancer survivors’ as those who had survived 5 years past their diagnosis or treatment, when the risk of a recurrent cancer had diminished substantially. These days there are still differing views as to what constitutes a survivor, but the National Coalition for Cancer Survivorship and the NCI Office of Cancer Survivorship consider a person to be a cancer survivor from the time of cancer diagnosis through the balance of his or her life.⁹

The rise in survivor rates reflects big strides in cancer detection and treatment and the effect of an aging population. For example, nearly 12 million people in the USA, almost four times as many as 40 years ago, are survivors.¹⁰ In the UK, there are over 2 million survivors, predicted to rise to 4 million by 2030.¹¹

As you can imagine, there has also been an accompanying rise in the number of survivor narratives available (see box, for an example). These survivors, like many patients are usually well informed and particularly motivated to transmit the knowledge they gained during their treatment to fellow patients. For example, some 70% claim they would volunteer to assist in survivorship activities.¹²

This patient group is now very visible on most information sites. The website of the American Society of Clinical Oncology (ASCO) even has its own section dedicated to survivors (see box). Survivors’ quest for information and involvement in oncology issues may not lessen once treatment for cancer has ended because many of them face a lifetime of side effects caused by their treatments. In one study of over 1000 survivors, 53% of respondents reported secondary health problems and 49% that non-medical cancer-related needs were unmet.¹¹

Diarmuid De Faoite and Bárbara Wicki

AO Foundation

[email protected]

[email protected]

A selection of websites relevant for cancer patients

Website of the American Society of Clinical Oncology (ASCO):

http://www.asco.org/

ASCO's website for patients/section for survivors:

www.cancer.net/www.cancer.net/patient/Survivorship/

National Cancer Institute (NCI):

www.cancer.gov/cancertopics

National Comprehensive Cancer Network (NCCN) Guidelines for Patients™:

http://www.nccn.org/patients/default.asp.

A medical education website for oncology clinicians:

http://www.researchtopractice.com/

Free individualized survivor care plan:

http://www.oncolink.com/oncolife/

An example of a survivor narrative:

http://www.nccn.com/component/content/article/67/848-elizabeth-edwards-and-sam-donaldson-discuss-cancer.html

A cancer survivor networking/dating site:

http://www.cancermatch.com/