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As the benefits of providing accurate information for patients are now undisputable, additional measures are being introduced in the majority of cancer clinics. It is important to measure the satisfaction of patients and modify and improve information strategies in response to their feedback. Previously no robust measures of satisfaction have existed, specific to information. We therefore developed, a questionnaire based on the feed back of  consecutive patients with a diagnosis of cancer.  From this information a one-page questionnaire has been developed with a 5 point scale for 6 individual sections. This questionnaire has been used in the West Anglia Cancer Network to help modify information services and audit their effectiveness in clinical practice. The methodology of its development and was presented in the 2002 British Oncology Association (BOA) conference and the European Society of Medical Oncology conference Nice 2002 and is described below . Versions in different languages are available free by clicking on the titles below (please feel free to use it in your department).

BACKGROUND TO THE DEVELOPMENT OF THE QUESTIONNAIRE. ABSTRACT FROM THE BRITISH ONCOLOGY ASSOCIATION CONFERENCE, CAMBRIDGE 2002

Measuring information strategies in Oncology - Developing an information satisfaction questionnaire. R.J.Thomas1,2 Kaminski E, Williams M.  The Primrose Clinical Research Unit Bedford Hospital, Bedford, MK42 9DJ, UK1, Oncology Centre, Addenbrooke’s Hospital, Cambridge University NHS Trust, Cambridge,  UK2.

Introduction Many cancer units have introduced specialist information nurses, leaflets, videos, and Internet sites to help inform their patient. Undoubtedly introducing these information strategies, have helped a great deal of patients but these on their own are not enough. To standardise optimal information provision within a region it is important to measure or audit patient’s satisfaction to the information provided and separate this satisfaction from other areas of the service. Some questionnaires have been developed and successfully used to measure global satisfaction such as that used in the recent UK Department of Health survey. A questionnaire specifically addressing information issues, however, has not previously been available – especially one which is simple yet able to identify patient defined subcategories and robust enough to be used in routine clinical practice. This project aimed to work with patients to achieve this goal.

Patients & methods Patients were required to have had a histological diagnosis of cancer and had completed an active treatment for cancer within the last six months, to ensure that their issues were still fresh in their minds. Seventy-seven consecutive patients eligible patients were approached by the clinic nurses whilst waiting for a consultation within in six consecutive outpatient clinics at the Primrose Oncology Unit, Bedford Hospital, over a two weeks period. Following a verbal and written explanation of the project, patients were then given a blank sheet of paper and were asked to write five or more of the most important categories of information which either helped them, or would have helped them, following their diagnosis, during their treatment and follow up. The nurse also recorded on the same page the sex, age, diagnosis and treatments the patient received. Four patients declined (2 male, 2 female), the remaining 73 (95%) patients returned the questionnaire before they left the clinic or returned it later by post. Twenty-four were male, 49 female, aged between 26-78 years (mean 55 yrs), 38% had breast cancer, 28% bowel, 12% had ovarian or lymphomas.

Results and development of the questionnaire The 73(95%) patients who returned their questionnaires provided a total of 303 statements, with a mean response per patient of 4.1 (range 1-6). Each of the answers were separated and reorganised in to nine categories based in order of frequency. This process was performed by a designated subgroup of the Information for Patients Research Group (IPRG) involving six qualified oncology nurses and two Consultant Oncologists and five patient volunteers. 

The panel had prospectively decided that the questionnaire should be no longer than one side of A4 paper, for it to be a robust working tool suitable for busy working oncology departments. The comments were therefore, combined into 5 comparably weighted sections based on similarity of subject, making it both simpler to complete and analyse, yet still able to detect deficits in area of patient concerns.  The score for each section was then determined by a standard 5 point Likert scale. An additional question was also included to give patients the opportunity to provide a score to overall performance

The purpose of the questionnaire was also to look for deficits between patient types, including age, sex, ethnic groups, tumour diagnosis and whether in a clinical trial. These questions were therefore included. A brief idea of the level of information required was also included based on our previous adaptation of an original information needs questionnaire developed for a West of Scotland survey.

Conclusion This study set out to design a robust auditing tool, which addresses the specific information concerns of patients, rather than those pre-conceived by health professionals. The emphasis has been placed on final satisfaction rather than what facilities are in place, the two of which do not necessary correlate. The art of information provision requires the optimisation of readily available quality materials at the appropriate time in the patient journey sensitive to their needs, abilities and culture. 

Despite the caveats and assumption in the design of this questionnaire, its simple one page format makes it a practical robust tool for auditing patient oriented information concerns within busy oncology departments. Its simplicity also allows easy evaluation, as a glance at the tabulated results (table.4) demonstrates deficit within information subgroups and simple analysis highlighted inconsistencies within patient subgroups. A summary of it potential uses are displayed in table 5. It can be used as a longitudinal study to evaluate the introduction of new information strategy such as ethnic language videos, or compare separate hospitals. For these reasons the questionnaire has been officially taken up by the West Anglian Cancer Network and an audit across the region is planned annually. 

Acknowledgements We wish to thank: The new opportunities fund for their financial support for translating the questionnaire; Cancernet.co.uk for web hosting the questionnaires free of charge; The patients and staff for their time and effort within the Information for Patients Research Group.

 

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