Receiving a diagnosis of cancer is a stressful life experience. The nature of the disease requires patients and their families to cope not only with the initial diagnosis of cancer and an uncertain outcome but also with unfamiliar procedures and the possibility of different treatment options.
Information seeking has been demonstrated to play a critical role in an individual's efforts to cope with the disruption of quality of life associated with cancer diagnosis and treatment (reference no 1). However, cancer is not just one disease. There are many types of cancer and each one behaves differently in different people. Furthermore, every patient is an individual with a unique medical situation and life experience, and a distinct set of informational needs that must be addressed. Having the relevant information not only helps patients understand the disease, but also helps them in making decisions which are based on medical evidence and advice and which are compatible with their own values and preferences (1-3). According to the medical literature, the benefits of relevant information include greater satisfaction with treatment choices and improved ability to cope during the diagnosis, treatment and post-treatment phases (1-2). Relevant information also contributes to reductions in anxiety and mood disturbances and improved communication with family members (3-4).
Yet, not all patients are similar in their need for information. Patients' demographics, cultural perspectives and the situation they find themselves in during the illness have been found to affect their need for specific types of information. Demographics such as age, education and gender might have a possible differential effect on the need for a particular type of information. Similarly, situational factors, such as patients' preferred decision-making style during illness, time elapsed since the diagnosis of cancer and type of treatment given, have been determined to potentially affect what the patient may wish to know (1,3,5).
It is important, therefore, that information should be given on an individual basis, thus matching each patient's expectations. There is also a need to understand that patients are often unable to recall much of what they are told during consultations. When information is particularly distressing and bad news is unexpected, some patients are unable to absorb any further information (3). As a consequence, these patients may feel that they are lacking information, which can result in, or exacerbate feelings of uncertainty, anxiety and depression (3). Several researchers have noted that patients frequently experience misunderstandings about their illness, its prognosis and treatment. Others have confirmed the frequency of misunderstanding by patients with cancer and have suggested that misunderstanding negatively influences treatment outcome (3).
In most studies addressing information needs of cancer patients, the information ranked most important by patients was information related to the illness itself, while in others, treatment-related information was the top priority (1-2). However, in the same context, it was found that clinicians, on average, give patients less than 70% of the information relevant to their disease and treatment, and patients recall less than 40% of what they are told (3). Studies have shown that cancer patients believe they are not given enough information. A large study in the UK found that 87% of participants preferred to have as much information as possible. Over 90% of patients who took part in the study stated that they needed, or would like to have information about all possible treatments, all possible side-effects and how the treatments work (3). These findings have been confirmed in surveys of cancer patients in North America and Australia (3, 6).
Although many information resources exist, most of them are lacking in several areas including the omission of relevant data, failure to give a balanced view of the effectiveness of different treatments, failure to include uncertainties while rarely promoting a participative approach to decision-making (3). Having an additional professional explain the information given in an oncology consultation, through a face-to-face meeting or even through a phone-call - might permit further discussion, clarification and reinforcement of that information. Moreover, allowing this additional resource to satisfy personalized information needs of cancer patients might result in achieving greater patient participation.