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 / Dont 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 Very satisfied Very satisfied Satisfied Satisfied Neither Neither Unsatisfied Unsatisfied Very unsatisfied Very unsatisfied Types of treatments available Very satisfied Very satisfied Satisfied Satisfied Not sure Not sure Unsatisfied Unsatisfied Very unsatisfied Very unsatisfied 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)
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)
Advise on lifestyle eg diet, exercise, complementary medicine,
support groups
Other practical day-day issues eg parking, transport, follow up
plans
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 - Youre 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. |
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.
Further general information Your doctors and specialist nurses are in an ideal position to give you relevant information on your disease and treatment as they know your individual circumstances. Cancerbackup has a help line (0808 800 1234) and a prize winning video available in English, Italian, Urdu, Bengali, Gujarati & Hindi explaining Radiotherapy & Chemotherapy. Cancernet.co.uk has over 500 pages describing cancer, its management, practical tips and tool which patients, their carers and their doctors have found helpful during the cancer journey.