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Article type: Editorial
Keywords: health literacy, .
This article has 5 comments
Patients need information. Is that clear?
The urgent quest for novel cancer treatments engages much of our attention, but could we be overlooking other opportunities for increasing patients’ survival and quality of life?
» Kathy Redmond
The urgent quest for novel cancer treatments engages much of our attention, but could we be overlooking other opportunities for increasing patients’ survival and quality of life?
One such opportunity that is increasingly gaining the attention of policy makers is improving health through improving health literacy. Defined as “the skills which determine the motivation and ability of individuals to gain access to, understand, and use information in ways which promote and maintain good health,” good health literacy can play a crucial role in improving outcomes, whether it be in prevention, treatment, palliative care or survivorship.
Poor health literacy is associated with poorer general health status, increased risk of hospitalisation and a lower capacity to care for oneself and share in treatment decision making. The problem is greater among lower socio-economic groups, ethnic minorities and the elderly, and consequently these groups have much to gain by health literacy initiatives tailored to their needs.
A recent European survey has shown that one in ten patients finds the information provided by physicians difficult to understand and many more struggle to decipher the information provided on a medicine leaflet. However, the problem is under-recognised and poorly addressed by health professionals, many of whom overestimate patients’ ability to understand and use health information.
As more and more cancers evolve into chronic conditions, we need to focus on how to meet the needs of cancer patients with literacy problems. As a first step we should audit patient information materials in current use to find out how far they were written with the needs of less literate patients in mind. Do they comply with the principles of clear health communication? Would they pass the clarity test if subjected to a readability assessment? Similar assessments done for other groups of patients suggest much of it would not.
There is help at hand. A number of groups have developed useful guides on how to write materials for patients with low literacy levels. Literacy experts recommend plain language, shorter sentences and larger type sizes, with a sharp contrast between the text and background. Testing draft materials on the target audience is also important. These are common-sense recommendations which should become the gold standard for the development of all patient education resources.
Health professionals can help promote health literacy by using jargon-free plain language in all their interactions with patients. They can also assess patients’ literacy levels using one of the readily available and easy to administer health literacy assessment tools. This could help in tailoring information to the patient’s level of understanding, in line with the current personalised approach to medicine.
These are steps we can all take right now to improve cancer outcomes, which are currently compromised by a disconnect between what professionals think patients need and what patients actually need.
COMMENTS (5)
| Ágnes Riskó (patient information) says: | 01 July 2011 14:22:41 |
| I agree: patients and their caretakers need information so far as possible about the illness and treatment. But do not forget, a lot of patients (especially new patients) are in psychic crises, their attention and memory is weary. At the same time a lot of them collect too much, apohryphal information. So it is a very complex task of experts, to increase with tailored information patients and others.Kathy Redmond's article helps to understand the value of "good enough" information. | |
| Hannu Tavio (patient information) says: | 03 July 2011 12:03:55 |
| Mostly Patient information is given only as knowledge of disease and treatments and accepted by professionals. Because Patients live their lives with Cancer diagnose, Cancer disease and different treatments or just follow up, may be aproach to their information needs could be more or something different. Are they clearly informed with novel definision of their path. Are they living their days as obviously overall survivors,suceesfully treated so far disease free survivors or effectively medicated progression free survivors. Another sight that should be discussed on a new way is the nature of and perhaps categorizing of different traetments. Still very often for example words Palliative care is used only as treating symptoms when there is not any more "Cancer treatments" and is a kind of a second last step into Palliative - end of life care. On the other hand we well know that for instance hormonal treatments are used in all stages of disease and treatments. Are we still often unproperly using historical terms and categorizing when writing leaflets and different Patinet quidebooks. | |
| Paul Litchfield (patient information) says: | 11 July 2011 10:52:59 |
| This is something that I have been dealing with for over 6 years. The National Cancer Action Team in the UK are working on this and have pilot studies going in various hospitals on Information Prescriptions. we have done several pilots over the last 6 years and it has made a big difference to peoples thoughts and quality of life. Paul Litchfield, Cancer Information and Support Services Manager paul.litchfield@uhb.nhs.uk | |
| Clare Moynihan (patient information) says: | 28 November 2011 23:13:03 |
| The question of 'information giving and receiving' continues......! On and on it goes. While it has been stated in no uncertain terms that patients should get all information at all times during their cancer 'journey' and that it should be given in terms that suit all patients, it has also been shown that not everybody wants all information all of the time or ever! In other words, many patients wish to pace the information received, many do not understand information given and yet many feel it is not welcome even if understandable, and wish instead, to leave decision making regarding all aspects of their cancer care to medical professionals. It is thus, a hard job for clinicians who are required to work at assessing patients' needs in the name of 'autonomy'. 'Autonomy' as it surrounds the whole question of information giving and receiving is as much about the latter as it is about negating the information discourse. When a plea for the importance of 'information giving' holds sway, without the ambiguities inherent in that concept, the huge importance of dependency is obliterated as well as the meaning of 'true autonomy'! Beware! | |
| Olivia Hasahya (patien information) says: | 11 January 2012 02:02:16 |
| I agree with you patient education or information is as vital as any other medication in cancer treatment. As the life span of cancer patients has become better, they live longer and are therefore Chronically sick and like any other chronic patient they tend to wish to live a normal life as much as possible. And with adequate information that can make it easy for these patients to cope with their situation. Many of these patients seek hospital for symptoms which otherwise can be handled at home or which can subside with time, but with inadequate information we give, they get frightened. Even when admitted at hospital for exampel, a good information flow is importat to reduce the duration of stay at hospital especially for those who are not very ill of course. Simple information like informing them about mobility and its correlation to ones wellbeing | |
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