Introduction

Discussion of cancer is undoubtedly stressful for both patients and doctors. Patients still perceive cancer as a disease that heralds a gloomy outcome preceded by unpleasant treatment¹. Oncologists have additional problems with handling the distress of patients and may overestimate how effective they have been in imparting information to them². The need for information may vary between patients and studies have shown that cancer patients wish to be well informed about their diagnoses, therapeutic options and side effects³. There is a need to further investigate and explore the information needs of cancer patients. This study explores the information desires, and associated anxieties, of patients with diagnosed central nervous system tumours.

Methods

A multi-method study was conducted, interfacing quantitative and qualitative data types. Following ethical approval, oncology out-patients, with a confirmed diagnosis of a CNS pathology, were recruited from an outpatient centre at a university teaching hospital. Following consent, a standardised interview was conducted. The questionnaire comprised three parts: 1. demographics; 2. two quantitative sets of items, the Extent of Information Desired⁴ (EID) and Anxiety towards Illness⁵ (AI)scales, and eight open questions. Item responses were coded and entered in SPSS v10.0. Responses to the open questions were transcribed and imported into QSR NUD*IST v4 coding and analysis. The qualitative code frame was then interfaced with the scale scores.

Results

83 patients were recruited. Of these, females account for 55% (46). The mean age for the sample was 50 years. The median number of prescribed drugs for the study sample was 2 (75^th percentile = 3; range 0 to 15). Scale consistency for both the EID and the AI were satisfactory (coefficient alpha 0.7 and 0.8 respectively). There was a correlation between number of prescribed drugs and AI scale (r=0.31, p=0.004). It was observed that women tended to use anxiety-related descriptions of their medication regimen and treatment compared with the dialogue used by men. Those scoring low on the EID scale expressed more dissatisfaction with information provision by health care professionals. This was usually couched in terms of difficulty in understanding.

Conclusions

The study has shown that information desires of oncology patients vary, especially with socio-economic variables. The data also suggests that this group of patients have different information desires compared with other patient groups⁵.

References

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2. Mackillop W. J., O'Sullivan B., Gospodarowicz M. "The role of cancer staging in evidence-based medicine." Cancer Prevention and Control 1998;2:269-277.

3. Fallowfield L. "Giving sad and bad news." Lancet 1993;341:476-478.

4. �ström K., Carlsson J., Bates I., Webb DG., Duggan C., Sanghani P. and McRobbie D. "Desire for information about drugs: A multi-method study in general medical inpatients." Pharmacy World and Science, 2000;22:159-164.

5. Duggan C., Bates I. "Development and evaluation of a survey tool to explore patients' perceptions of their prescribed drugs and their need for drug information". Int. J. Pharmacy Practice 2000;8:42-52.