Information Satisfaction Questionnaire (ISQ)Σ

1.       Are you a  Patient or Relative?   Are you Male or Female?   What is your age ....…….
2.       Do you feel you belong to any particular Ethnic group?  Yes / No .……………………….
3.       Is English your first language Yes/ No. If no please state…………………………………...
4.       Do you know what type of illness you have Yes / No. If yes what...………………………..
5.       Have you been asked to enter a clinical trial Yes / No / Don’t know.  Did you accept  Yes / No

Which one of the following categories most applies to you (please tick 1 box):-

I would like all available information & be involved in decision about my illness

 

I would only like positive information about my illness

 

I would only like limited information & would prefer the doctor to make the decisions

 

 


1.       Do you feel information provision could have been improved?     Yes / No  
2.       How satisfied are you with the information you received during your illness (tick 1 box in each table):-

Explanation of your illness eg diagnosis, outcome, aggressiveness, genetic risk

 

Information on side effects eg How would treatment affected you, explanation of early and late side effects)

Very satisfied

 

 

Very satisfied

 

Satisfied

 

 

Satisfied

 

Neither

 

 

Neither

 

Unsatisfied

 

 

Unsatisfied

 

Very unsatisfied

 

 

Very unsatisfied

 

 

 

 

 

 

Types of treatments available  (e.g. options available / relative benefits/ clinical trials)

 

Advise on lifestyle eg diet, exercise, complementary medicine, support groups

Very satisfied

 

 

Very satisfied

 

Satisfied

 

 

Satisfied

 

Not sure

 

 

Not sure

 

Unsatisfied

 

 

Unsatisfied

 

Very unsatisfied

 

 

Very unsatisfied

 

 

 

 

 

 

Other practical day-day issues eg parking, transport, follow up plans

 

Overall information provided (summarises all information given)

Very satisfied

 

 

Very satisfied

 

Satisfied

 

 

Satisfied

 

Not sure

 

 

Not sure

 

Unsatisfied

 

 

Unsatisfied

 

Very unsatisfied

 

 

Very unsatisfied

 

 Additional information on cancer, its management & other issues can be found on cancernet.co.uk.

Copyright, Health Education Publications (HEP) 108Talbot Rd, London W11 1JR - please use free if you wish (we could appreciate an email to let us know it may be used. thank you)

 

 

 

 

HOW TO USE & EVALUATE ISQ-1

 

INTRODUCTION.

This form was developed and has been used extensively by the Information for Patients Research Group, Cambridge. This group consists of a multidisciplinary team of professionals including oncologist, pharmacist, statisticians, nurses, radiographers, secretaries and other interested staff. Trials and audits are designed in close liaison with patients and relatives during regular advocacy meetings. This form has been used successfully in several longitudinal published audits [1-5] and prototypes of the form used in a number of attitudinal surveys[6, 7] .

Close patient involvement means that it is easily readable and understandable and the clear precise questions allow simple, quick & reliable evaluation. It is recommended for all oncology units across the country to investigate the needs and satisfaction of their patients either within specified Clinical Governance programmes or separately.

PATIENT COHORT

This questionnaire is designed to be given to patients who have made significant in roads into their oncology management in order that sufficient experience has been established. For example, towards the end of a radiotherapy course, following at least two cycles of chemotherapy, or 8 weeks into hormonal therapies. It can be used for patients who have completed therapy but no longer than 1 year following diagnosis.

HOW IS THE FORM COMPLETED.

The form can be posted or given to patients in clinic with a stamped addressed envelope. A formal randomisation process should either pick patients or all patients approached within one unit or clinic within a pre-specified time period. This way, bias to patient selected is diminished.

HOW IS THE FORM SCORED.

Section one The background demographics in this section can be used to correlate with other variables either in their overall management or to those elsewhere in the form eg information needs or satisfaction. If you are intending to publish your audit it may also be useful to complete this section yourself on patients who were approached but have not completed a form themselves.

Section two This section is brief summary of an established information needs questionnaire which categories patients into three types depending on the level of information they require[4, 8] . This data can also be used to correlate with other variables either in their overall management or to those elsewhere in the form eg demographics or satisfaction.

Section three Satisfaction with the information received. The first is a general question for quick analysis. The single variable makes correlation to other variables within the form simple. More detailed information is collected from the six tables. These were the most important categories indicated in the Bedford Hospital NHS Trust Blue Sky Patient information Project[9] .   Each table scores 4 credits equally weighted (very unsatisfied = 0, very satisfied = 4). Evaluators can direct specific resources into their unit depending on the scores within each table. For the overall score the IPRG recommend the following advise:-

 

Score

Recommendation

20-24

Excellent - You’re doing well tell your colleagues / clinical governance panels how you have successfully achieved impressive patient information satisfaction 

15-19

Good – Minor fine-tuning required.

10-14

Fair – Moderate implementation required.

5-9

Poor- The majority of your patients are unsatisfied – major re-organisation including re-staffing is required – ask for help immediately.

0-4

 Very Poor – most of your patients are very dissatisfied. This must be leading to major disruption to you and your colleagues. If it is not already a problem you are heading for major litigation[2, 14] . Major re-structuring urgently required.

 

References

 

1.         Thomas R, Daly M, and P. J, Forewarned is forearmed - Randomised evaluation of a preparatory information film for cancer patients. European Journal of Cancer, August 2000.

2.         Thomas R, Thorton H, and M. J., Patient Information materials in Oncology: Are they needed and do they work? Clinical Oncology, 1999. 11:

3.            Thomas, R., Evidence  based patient information - Local policies would be better than a national strategy. British Medical Journal, 1999. 318: p. 462.

4.            Thomas, R., et al., Anxiety and Depression - Effect on patients' preferences for information following a diagnosis of cancer. Annuls of Oncology (ESMO), 1998. 9(4): p. 141.

5.            Shingler, G., R. Bulusu, and R. Thomas, Where do patients seek additional information after a diagnosis of cancer - a multicentre survey. European Journal of Cancer, 1996. 33(8): p. 1426.

6.            Thomas, R., D. Stockton, and K. Akass, Patients preferences for video directed information. Effects of age, sex and ethnic group. European Journal of Cancer Care, 1999. 8: p. 81-86.

7.            Kaminski, E., N. DeZeeuz, and R. Thomas, Patients attitudes towards an individualised filofax information system. European Journal of Cancer, 1997. 33(Supplement 8): p. 1401.

8.            Meredith, C., et al., Information needs of cancer patients in the west of Scotland : cross-sectional survey of patients' views. BMJ, 1996. 313: p. 724-6.

9.            Thomas, R., M. Williams, and L. Hunt, Taking the information to the patient developments and evaluation of a patient information strategy. Annals of Oncology, 2000. ESMO supplement Nov 2000 (tba).

10.            Fallowfield, L., M. Lipkin, and A. Hall, Teaching senior oncologist communication skills: results. J.Clin Oncol, 1998. 16: p. 1961-1968.

11.            Maguire, P. and A. Faulkner, Training Communication Courses. 1988. 297: p. 847-1578.

12.        Audit Commission, What seems to be the matter : communication between hospitals and patients, . 1993, HMSO LONDON.

13.            National Cancer Alliance, Patient-centred cancer services?  What patients say. National Cancer Alliance, 1996.

14.            Ombudsman, Report of the Health service Ombudsman, . 1995, HMSO: London.