5. DATA COLLECTION AND QUESTIONNAIRES

Eight data records were used in this study:

1. Data was extracted from appointment diaries and medical records for a study ‘registration record’.
2. Patients’ responses to the invitation to participate were recorded in a ‘recruitment record’.
3. All patients recruited, completed a self-completed questionnaire ‘Patient Baseline Questionnaire’. These differed slightly by cancer type. The questionnaire for patients with breast cancer is included in this Appendix.
4. All 400 consenting patients were asked if they would be prepared to pass a questionnaire to a 'significant other'. This questionnaire ‘Significant Other Baseline Questionnaire’ has been referred to in the paper as baseline data for ‘confidants’.
5. An ‘intervention record’ was compiled for all patients including data about the information booklet and whether the patient took it.
6. A further more detailed file, ‘interactive group choices’ was compiled from the computer interaction for those in the interactive groups.
7. All patients were sent a ‘Patient Follow-up Questionnaire’ at 3 months. This included their use and opinions of the booklet, reported understanding of cancer, and a further HSSQ.
8. Confidants were also sent a ‘Significant Other Follow-up Questionnaire’ at 3 months.

RECRUITMENT RECORD

To be completed for all patients who have been sent a recruitment letter and who are asked to take part in the study.

CONTINUE FOR RECRUITED PATIENTS

Letter sent to GP (date):

Record developed [ ] Yes [ ] No

Intervention date: Time: Room:

PATIENT INFORMATION STUDY

AT THE BEATSON ONCOLOGY CENTRE

Thank you for agreeing to participate in this study. Please could you complete this short questionnaire and bring it with you when we next meet.

Thanks for your help, best wishes

Janne Pearson (Tel: 0141 211 2588)

If you are in a group where you choose information from the computer, you might like to be thinking about what information you want and write down your questions here. I can not guarantee that the computer will have the answers to your questions, but at least if you have it written, it will act as a reminder. (you can keep this questionnaire until after you have used the computer). I will, if you wish, of course, help you to use the computer.

______________________________________________________________________

INFORMATION

1. Have you ever used a computer before? Yes [ ] No [ ]

If yes,

Have you used computers

Almost daily [ ] Quite frequently [ ] Just a few times [ ]

Do you have a computer at home? Yes [ ] No [ ]

 

2. Have you, or has anybody on your behalf, ever got information about cancer from the

Internet? (Tick (ü ) as appropriate).

[ ] Yes, I have myself [ ] Yes, somebody got information for me [ ] No

/continued over page

INFORMATION (continued)

3. Have you read any of the following booklets by cancerBACUP?

(Please tick (ü ) all that apply.)

[ ] Understanding Chemotherapy [ ] Diet and the Cancer Patient

[ ] Coping with Hair Loss [ ] Sexuality and Cancer

[ ] Cancer and Complementary Therapies [ ] What do I tell the children?

[ ] Understanding Clinical Trials [ ] Talking About Your Cancer

[ ] Controlling Pain and Other Symptoms [ ] Depression and Cancer

4. In general, are you satisfied with the information that you have been able to obtain up to now about your cancer?

5. In general, how much do you feel that you understand your cancer?

6. How would you describe your attitude to information about your illness?

(Tick (ü ) the one which best describes how you feel.)

[ ] I want additional information only if it is good news

7. If you read a newspaper(s) which would you read?

[ ] Daily Express [ ] Daily Mail [ ] Daily Record

[ ] Evening Times [ ] Guardian [ ] Herald

[ ] Independent [ ] Mail on Sunday [ ] News of the World

[ ] Observer [ ] Scotland on Sunday [ ] Scotsman

[ ] Sun [ ] Sunday Mail [ ] Sunday Post

[ ] Sunday Times [ ] Times [ ] Local newspaper

Other (please specify) ..............................…………………………………

I never read a newspaper [ ]

/continued over page

FAMILY AND FRIENDS

One of the things that we are looking at in this study is whether written information helps you at all in discussing things with family and friends. We are also interested whether written information helps them.

8. Do you live….. (Tick (ü ) the one which best describes how you feel.)

[ ] in a home with carers (for example a nursing home)

[ ] alone in your own (rented or owned) home

[ ] with husband, wife, or partner only

[ ] with husband, wife or partner and adult children

[ ] with husband, wife or partner and dependent children

[ ] with dependent children only

[ ] in household with one or more of your adult children

[ ] in household with other relative or friend

If none of the above, please describe here…………………………………..

………………………………………………………………………………….…

9. Who is the person that you are most likely to discuss how you feel about your cancer and its treatment with? (e.g. husband, wife, partner, son, daughter, best friend, carer, sister, brother etc.)

………………………………………………………………………………………… ………………….………………………………………………………………………

………………………………………………………………………………………….

10. Along with the questionnaires that I gave you I included another envelope marked ‘For significant other/supporting person’. This contains a questionnaire, similar to this one, which we would like the person that you have named in question 6 above, to complete.

[ ] I can ask without any problem

[ ] I can ask but I do not want to

[ ] I feel a bit awkward about asking, but I will ask

[ ] I feel very awkward about it and I can not ask

[ ] I definitely could not ask

[ ] I do not have anyone I feel able to ask

/continued over page

EMOTIONS

Doctors are aware that emotions play an important part in most illnesses. This questionnaire is designed to help us know how you feel.

Read each item and tick (ü ) the box opposite the reply which comes closest to how you have been feeling in the past week.

Don’t take too long over your replies: your immediate reaction to each item will probably be more accurate than a long thought-out response.

TICK (ü ) ONLY ONE BOX IN EACH SECTION

I feel tense or ‘wound up’: I feel as if I am slowed down:

Most of the time [ ] Nearly all the time [ ]

A lot of the time [ ] Very often [ ]

Time to time, occasionally [ ] Sometimes [ ]

Not at all [ ] Not at all [ ]

I get a sort of frightened feeling like

I still enjoy the things I used to enjoy: ‘butterflies’ in the stomach:

Definitely as much [ ] Not at all [ ]

Not quite so much [ ] Occasionally [ ]

Only a little [ ] Quite often [ ]

Hardly at all [ ] Very often [ ]

I get a sort of frightened feeling as if

something awful is about to happen: I have lost interest in my appearance:

Very definitely and quite badly [ ] Definitely [ ]

Yes, but not too badly [ ] I don’t take as much care as I should [ ]

A little, but it doesn’t worry me [ ] I may not take quite as much care [ ]

Not at all [ ] I take just as much care as ever [ ]

I can laugh and see the funny side of things: I feel restless as if I have to be on the move:

As much as I always could [ ] Very much indeed [ ]

Not quite so much now [ ] Quite a lot [ ]

Definitely not so much now [ ] Not very much [ ]

Not at all [ ] Not at all [ ]

Worrying thoughts go through my mind: I look forward with enjoyment to things:

A great deal of the time [ ] As much as ever I did [ ]

A lot of the time [ ] Rather less than I used to [ ]

From time to time but not too often[ ] Definitely less than I used to [ ]

Only occasionally [ ] Hardly at all [ ]

I feel cheerful: I get sudden feelings of panic:

Not at all [ ] Very often indeed [ ]

Not often [ ] Quite often [ ]

Sometimes [ ] Not very often [ ]

Most of the time [ ] Not at all [ ]

I can sit at ease and feel relaxed: I can enjoy a good book or radio or TV prog:

Definitely [ ] Often [ ]

Usually [ ] Sometimes [ ]

Not often [ ] Not often [ ]

Not at all [ ] Very seldom [ ]

COPING STYLE

The next four questions may seem a bit odd but please bear with us. We ask them because they have been used in other studies and have been shown to be good pointers to how people prefer to cope with difficult situations.

1. Vividly imagine that you are afraid of the dentist and have to get some dental work done. Which of the following would you do?

Tick (ü ) all of the statements that might apply to you.

[ ] I would ask the dentist exactly what work was going to be done.

[ ] I would take a tranquillizer or have a drink before going.

[ ] I would try to think about pleasant memories.

[ ] I would want the dentist to tell me when I would feel pain.

[ ] I would try to sleep.

[ ] I would watch all the dentist’s movements and listen for the sound of the drill.

[ ] I would watch the flow of water from my mouth to see if it contained blood.

[ ] I would do mental puzzles in my mind.

2. Vividly imagine that you are being held hostage by a group of armed terrorists in a public building. Which of the following would you do?

Tick (ü ) all of the statements that might apply to you.

[ ] I would sit by myself and have as many daydreams and fantasies as I could.

[ ] I would stay alert and try to keep myself from falling asleep.

[ ] I would exchange life stories with the other hostages.

[ ] I would watch every movement of my captors and keep an eye on their weapons

[ ] I would try to sleep as much as possible.

[ ] I would think about how nice it’s going to be when I get home.

[ ] I would make sure I knew where every possible exit was.

/continued over page

COPING STYLE (continued)

3. Vividly imagine that you have a job in a company and that due to a large drop in sales, it is rumoured that several people in your department will be laid off. Your supervisor has turned in an evaluation of your work for the past year. The decision about lay-offs has been made and will be announced in several days.

Tick (ü ) all of the statements that might apply to you.

[ ] I would talk to my fellow workers to see if they knew anything about what the

supervisor evaluation of me said.

[ ] I would review the list of duties for my present job and try to figure out if I had

fulfilled them all.

[ ] I would go to the movies to take my mind off things.

[ ] I would try to remember any arguments or disagreements I might have had that

would have resulted in the supervisor having a lower opinion of me.

[ ] I would push all thoughts of being laid off out of my mind.

[ ] I would tell my partner that I’d rather not discuss my chances of being laid off.

[ ] I would try to think which employees in my department the supervisor might have

thought had done the worst job.

[ ] I would continue doing my work as if nothing special was happening.

4. Vividly imagine that you are on an aeroplane, thirty minutes from your destination, when the plane unexpectedly goes into a deep dive and then suddenly levels off. After a short time, the pilot announces that nothing is wrong, although the rest of the ride may be rough. You, however, are not convinced that all is well.

Tick (ü ) all of the statements that might apply to you.

[ ] I would make small talk with the passenger beside me.

[ ] I would watch the end of the movie, even if I had seen it before.

[ ] I would call for the flight attendant and ask what exactly the problem was.

[ ] I would order a drink from the flight attendant or take a tranquillizer.

[ ] I would talk to the passenger beside me about what might be wrong.

[ ] I would settle down and read a book or magazine or write a letter.

SUPPORT FROM FAMILY AND FRIENDS

People help each other in different ways. Some of these are listed below. I would like to know how likely your family or friends would be to help you. I realise that you may rarely need this kind of help. But if you did, based on your experience in the last month, tick (ü ) one box in each section to show how likely your family or friends would....

tell you about the available choices and options for your cancer

[ ] no one would do this [ ] someone might do this

[ ] someone would probably do this [ ] someone would certainly do this

give you a lift in a car if you needed one

[ ] no one would do this [ ] someone might do this

[ ] someone would probably do this [ ] someone would certainly do this

comfort you if you were upset

[ ] no one would do this [ ] someone might do this

[ ] someone would probably do this [ ] someone would certainly do this

show you that they understood how you were feeling

[ ] no one would do this [ ] someone might do this

[ ] someone would probably do this [ ] someone would certainly do this

give advice about what to do with your cancer

[ ] no one would do this [ ] someone might do this

[ ] someone would probably do this [ ] someone would certainly do this

show affection to you

[ ] no one would do this [ ] someone might do this

[ ] someone would probably do this [ ] someone would certainly do this

suggest how you could find out more about a situation

[ ] no one would do this [ ] someone might do this

[ ] someone would probably do this [ ] someone would certainly do this

help you decide what to do

[ ] no one would do this [ ] someone might do this

[ ] someone would probably do this [ ] someone would certainly do this

listen if you needed to talk about your feelings

[ ] no one would do this [ ] someone might do this

[ ] someone would probably do this [ ] someone would certainly do this

look after your belongings (house, pet, kids etc.) for a while

[ ] no one would do this [ ] someone might do this

[ ] someone would probably do this [ ] someone would certainly do this

give you reasons why you should or should not do something

[ ] no one would do this [ ] someone might do this

[ ] someone would probably do this [ ] someone would certainly do this

run an errand for you

[ ] no one would do this [ ] someone might do this

[ ] someone would probably do this [ ] someone would certainly do this

help you out with household chores (cooking, cleaning, laundry)

[ ] no one would do this [ ] someone might do this

[ ] someone would probably do this [ ] someone would certainly do this

help manage personal affairs (talk to other people for you, making appointments)

[ ] no one would do this [ ] someone might do this

[ ] someone would probably do this [ ] someone would certainly do this

be sympathetic if you were upset

[ ] no one would do this [ ] someone might do this

[ ] someone would probably do this [ ] someone would certainly do this

THE LAST PAGE

Sometimes even when people have good intentions, they say something or do something that upsets us. Below there is a list of some of these things.

Think about the last month.

How often did the following situations arise with your significant other/supporting person, that is the person you listed earlier in this questionnaire?

If you did not name someone as your significant other/supporting person, please skip this section.

TICK (ü ) ONLY ONE BOX IN EACH SECTION

1. changes the subject when I try to discuss my illness

[ ] never [ ] rarely [ ] sometimes [ ] often [ ] very often

2. tells negative stories about other people who have cancer

[ ] never [ ] rarely [ ] sometimes [ ] often [ ] very often

3. doesn't understand my situation

[ ] never [ ] rarely [ ] sometimes [ ] often [ ] very often

4. avoids me

[ ] never [ ] rarely [ ] sometimes [ ] often [ ] very often

4. appears afraid to be around me

[ ] never [ ] rarely [ ] sometimes [ ] often [ ] very often

6. minimises my problems

[ ] never [ ] rarely [ ] sometimes [ ] often [ ] very often

7. seems to be hiding feelings

[ ] never [ ] rarely [ ] sometimes [ ] often [ ] very often

8. acts uncomfortable when I talk about my illness

[ ] never [ ] rarely [ ] sometimes [ ] often [ ] very often

9. trivialises my problems

[ ] never [ ] rarely [ ] sometimes [ ] often [ ] very often

10. tells me I look well when I don't

[ ] never [ ] rarely [ ] sometimes [ ] often [ ] very often

Thank you very much for completing the questionnaire.

Please bring it with you and give it to me when we next meet.

If you have any problems understanding or completing this questionnaire and need to contact me you can do so on 0141 211 2588. You can leave a message on the answering machine if I am not in the office at the time.

If you are not able to come to the hospital on the day that we arranged, it would be helpful if you could let me know.

Many thanks,

Janne Pearson, Patient Information Study, C/o Dept of Public Health

University of Glasgow, 1 Lilybank Gardens, Glasgow G12 8RZ

PATIENT INFORMATION STUDY

BEATSON ONCOLOGY CENTRE

BASELINE QUESTIONNAIRE FOR

SIGNIFICANT OTHER/SUPPORTING PERSON

Thank you very much for agreeing to take part in this study. Please complete this questionnaire and return it in the prepaid envelope or to the address below.

With best wishes,

Janne Pearson

Janne Pearson Patient Information Study C/o University of Glasgow
Dept of Public Health
1 Lilybank Gradens
Glasgow G12 8RZ
Tel: 0141 211 2588
Email: j.pearson@clinmed.gla.ac.uk
 

Please answer the questions in the spaces provided or tick (ü ) boxes as required.

1. Your first name:…………………….…Your surname………….:………………………..

Address (to send you the follow up questionnaire)..……………………………….

………………………………………………………………………………………

………………………………………………………………………………………

Postcode:……………………………..

2. What is your relationship to the patient? ……………………………………………………

(e.g. husband, wife, son, daughter, sister, brother, friend, neighbour, carer, etc.)

3. Are you a ‘blood relative’ of the patient? [ ] Yes [ ] No

4. What is your age?…………………

5. Are you male or female?…………………..

6. Are you satisfied with the information that you have been able to obtain up to now about the patient’s cancer?

[ ] Very satisfied [ ] Satisfied [ ] No opinion [ ] Dissatisfied [ ] Very dissatisfied

7. If you read a newspaper(s) which would you read?

[ ] Daily Express [ ] Daily Mail [ ] Daily Record

[ ] Evening Times [ ] Guardian [ ] Herald

[ ] Independent [ ] Mail on Sunday [ ] News of the World

[ ] Observer [ ] Scotland on Sunday [ ] Scotsman

[ ] Sun [ ] Sunday Mail [ ] Sunday Post

[ ] Sunday Times [ ] Times [ ] Local newspaper

Other (please specify) ..............................…………………………………

I never read a newspaper [ ]

8. How often have you discussed cancer topics with the patient during the last three months? (Tick (ü ) one box)

All the time, i.e. a few times a day [ ]

Frequently, i.e. a few times a week [ ]

Sometimes, i.e. five or six times during the last three months [ ]

Rarely, i.e. once or twice in the last three months [ ]

Never [ ]

9. In general, how much do you feel you understand about the patient’s cancer?

EMOTIONS

Doctors are aware that emotions play an important part in most illnesses and amongst the relatives and friends of those with serious illness. This questionnaire is designed to help us know how you feel now.

Read each item and tick (ü ) the box opposite the reply which comes closest to how you have been feeling in the past week.

Don’t take too long over your replies: your immediate reaction to each item will probably be more accurate than a long thought-out response.

TICK (ü ) ONLY ONE BOX IN EACH SECTION

I feel tense or ‘wound up’: I feel as if I am slowed down:

Most of the time [ ] Nearly all the time [ ]

A lot of the time [ ] Very often [ ]

Time to time, occasionally [ ] Sometimes [ ]

Not at all [ ] Not at all [ ]

I get a sort of frightened feeling like

I still enjoy the things I used to enjoy: ‘butterflies’ in the stomach:

Definitely as much [ ] Not at all [ ]

Not quite so much [ ] Occasionally [ ]

Only a little [ ] Quite often [ ]

Hardly at all [ ] Very often [ ]

I get a sort of frightened feeling as if

something awful is about to happen: I have lost interest in my appearance:

Very definitely and quite badly [ ] Definitely [ ]

Yes, but not too badly [ ] I don’t take much care as I should [ ]

A little, but it doesn’t worry me. [ ] I may not take quite as much care [ ]

Not at all [ ] I take just as much care as ever [ ]

I can laugh and see the funny side of things: I feel restless as if I have to be on the move:

As much as I always could [ ] Very much indeed [ ]

Not quite so much now [ ] Quite a lot [ ]

Definitely not so much now [ ] Not very much [ ]

Not at all [ ] Not at all [ ]

Worrying thoughts go through my mind: I look forward with enjoyment to things:

A great deal of the time [ ] As much as ever I did [ ]

A lot of the time [ ] Rather less than I used to [ ]

From time to time but not too often [ ] Definitely less than I used to [ ]

Only occasionally [ ] Hardly at all [ ]

I feel cheerful: I get sudden feelings of panic:

Not at all [ ] Very often indeed [ ]

Not often [ ] Quite often [ ]

Sometimes [ ] Not very often [ ]

Most of the time [ ] Not at all [ ]

I can sit at ease and feel relaxed: I can enjoy a good book or radio or TV prog:

Definitely [ ] Often [ ]

Usually [ ] Sometimes [ ]

Not often [ ] Not often [ ]

Not at all [ ] Very seldom [ ]

COPING STYLE

These last four questions may seem a bit odd but please bear with us. We ask them because they have been used in other studies and have been shown to be good pointers to how people prefer to cope with difficult situations.

1. Vividly imagine that you are afraid of the dentist and have to get some dental work done. Which of the following would you do?

Tick (ü ) all of the statements that might apply to you.

[ ] I would ask the dentist exactly what work was going to be done.

[ ] I would take a tranquillizer or have a drink before going.

[ ] I would try to think about pleasant memories.

[ ] I would want the dentist to tell me when I would feel pain.

[ ] I would try to sleep.

[ ] I would watch all the dentist’s movements and listen for the sound of the drill.

[ ] I would watch the flow of water from my mouth to see if it contained blood.

[ ] I would do mental puzzles in my mind.

2. Vividly imagine that you are being held hostage by a group of armed terrorists in a public building. Which of the following would you do?

Tick (ü ) all of the statements that might apply to you.

[ ] I would sit by myself and have as many daydreams and fantasies as I could.

[ ] I would stay alert and try to keep myself from falling asleep.

[ ] I would exchange life stories with the other hostages.

[ ] I would watch every movement of my captors and keep an eye on their weapons

[ ] I would try to sleep as much as possible.

[ ] I would think about how nice it’s going to be when I get home.

[ ] I would make sure I knew where every possible exit was.

/continued overpage

COPING STYLE (continued)

3. Vividly imagine that you have a job in a company and that due to a large drop in sales, it is rumoured that several people in your department will be laid off. Your supervisor has turned in an evaluation of your work for the past year. The decision about lay-offs has been made and will be announced in several days.

Tick (ü ) all of the statements that might apply to you.

[ ] I would go to the movies to take my mind off things.

[ ] I would push all thoughts of being laid off out of my mind.

[ ] I would tell my partner that I’d rather not discuss my chances of being laid off.

[ ] I would continue doing my work as if nothing special was happening.

4. Vividly imagine that you are on an airplane, thirty minutes from your destination, when the plane unexpectedly goes into a deep dive and then suddenly levels off. After a short time, the pilot announces that nothing is wrong, although the rest of the ride may be rough. You, however, are not convinced that all is well.

Tick (ü ) all of the statements that might apply to you.

[ ] I would make small talk with the passenger beside me.

[ ] I would watch the end of the movie, even if I had seen it before.

[ ] I would call for the flight attendant and ask what exactly the problem was.

[ ] I would order a drink from the flight attendant or take a tranquillizer.

[ ] I would talk to the passenger beside me about what might be wrong.

[ ] I would settle down and read a book or magazine or write a letter.

Interactive Group Choices

Patients in interactive groups could choose sections from:

1. The appropriate site-specific booklet (e.g. Understanding Breast Cancer)
2. Understanding Radiotherapy
3. Diet and the Cancer Patient
4. Cancer and Complementary Therapies
5. Feeling Better Controlling Pain
6. Sexuality and Cancer

These six booklets had a total of 78 sections; ‘interactive’ group patients were allowed to choose up to 10. Their choices were stored by the computer program used by patients and subsequently transferred to spreadsheets and nine SPSS files (The four site specific files and files 2-6).

Each file had factors (with values 0 for not chosen and 1 for chosen) for each sections offered. For example, data for one patient on sections chosen from the CancerBACUP booklet on Diet were as follows:

studynum study number 321

d1intro introduction 0

d2build the building up diet 1

d3boost boosting energy and protein 0

d4extra extra energy and protein 1

d5drinks nourishing drinks 0

d8sore sore mouth 0

d9dry dry mouth 0

d10taste changed taste 0

d11tired too tired to cook or eat 1

d12const constipation 0

d13diarr diarrhoea 0

d14wind wind 0

d15sick feeling sick 0

d16chew difficulty in chewing and swallowing 0

d17app poor appetite 0

d19part3 a healthy eating guide 0

PATIENT INFORMATION STUDY

BEATSON ONCOLOGY CENTRE

FOLLOW-UP QUESTIONNAIRE

About three months ago you agreed to help me with this study on patient information at the Beatson Oncology Centre. You either used a computer to produce a booklet giving information about cancer, or you were given a booklet but didn't use the computer. I now hope that you will be able to help again by completing this questionnaire and returning it in the enclosed prepaid envelope or to me at the address below. Some of the questions will be the same as you were asked three months ago. This allows us to see if things have changed for you over the last three months.

Thank you very much for your help with this project.

With best wishes,

Janne Pearson

Janne Pearson
Patient Information Study
C/o University of Glasgow
Dept of Public Health
1 Lilybank Gardens
Glasgow G12 8RZ

Tel: 0141 211 2588
Email:%20j.pearson{at}clinmed.gla.ac.uk

Please tick (ü ) one box only for each question on this page.

If you chose NOT to take a booklet from the computer, please start at question 20.

QUESTIONS ABOUT THE BOOKLET

1. Do you still have the booklet? [ ] Yes [ ] No

2. Did you read it? [ ] Yes [ ] No

If you never read it, please go to question 12 on the next page.

3. Did you find it? [ ] very useful [ ] moderately useful [ ] of no use

4. Did it tell you anything new? [ ] definitely yes [ ] not really

[ ] possibly [ ] definitely no

5. Was the information relevant? [ ] definitely yes [ ] not really

[ ] possibly [ ] definitely no

6. Were you able to find information easily? [ ] definitely yes [ ] not really

[ ] possibly [ ] definitely no

7. Did you feel overwhelmed with information? [ ] definitely yes [ ] not really

[ ] possibly [ ] definitely no

8. Did you find the information too technical? [ ] definitely yes [ ] not really

[ ] possibly [ ] definitely no

9. Did you find the information too limited? [ ] definitely yes [ ] not really

[ ] possibly [ ] definitely no

10. Was there any information that you expected that was not there? [ ] Yes [ ] No

11. Did the information change your ideas [ ] definitely yes [ ] not really

about something? [ ] possibly [ ] definitely no

12. Have you shown the booklet to …………………………..............

(the person you named in the previous questionnaire as offering you support.)

[ ] Yes [ ] No [ ] Not applicable

If yes, did they read it ? [ ] Yes [ ] No [ ] Don't know

13. Have you shown the booklet to anyone else in your household? [ ] Yes [ ] No

14. Have you shown the booklet to anyone else other than those in questions 12 and 13? (For example, to another family member, a friend, a doctor or nurse)?

If yes, who…………………………………………………………………………….

…………………………………………………………………………………………

15. If you have shown the booklet to anyone, did it help in discussing your cancer and its treatment with them?

[ ] definitely yes [ ] possibly a bit [ ] not really [ ] not at all

16. If you have any comments on things that you particularly liked about the booklet,

write them here.

17. If you have any comments on things that you particularly disliked about the booklet,

write them here.

IN GENERAL

[ ] Very satisfied [ ] Satisfied [ ] No opinion [ ] Dissatisfied [ ] Very dissatisfied

21. In general, how much do you feel you understand about your cancer?

................................................................................................................................................................................................................................................/continued overpage

EMOTIONS

Doctors are aware that emotions play an important part in most illnesses. This questionnaire is designed to help us know how you feel.

Read each item and tick (ü ) the box opposite the reply which comes closest to how you have been feeling in the past week.

Don’t take too long over your replies: your immediate reaction to each item will probably be more accurate than a long thought-out response.

TICK (ü ) ONLY ONE BOX IN EACH SECTION

I feel tense or ‘wound up’: I feel as if I am slowed down:

Most of the time [ ] Nearly all the time [ ]

A lot of the time [ ] Very often [ ]

Time to time, occasionally [ ] Sometimes [ ]

Not at all [ ] Not at all [ ]

I get a sort of frightened feeling like

I still enjoy the things I used to enjoy: ‘butterflies’ in the stomach:

Definitely as much [ ] Not at all [ ]

Not quite so much [ ] Occasionally [ ]

Only a little [ ] Quite often [ ]

Hardly at all [ ] Very often [ ]

I get a sort of frightened feeling as if

something awful is about to happen: I have lost interest in my appearance:

Very definitely and quite badly [ ] Definitely [ ]

Yes, but not too badly [ ] I don’t take much care as I should [ ]

A little, but it doesn’t worry me [ ] I may not take quite as much care [ ]

Not at all [ ] I take just as much care as ever [ ]

I can laugh and see the funny side of things: I feel restless as if I have to be on the move:

As much as I always could [ ] Very much indeed [ ]

Not quite so much now [ ] Quite a lot [ ]

Definitely not so much now [ ] Not very much [ ]

Not at all [ ] Not at all [ ]

Worrying thoughts go through my mind: I look forward with enjoyment to things:

A great deal of the time [ ] As much as ever I did [ ]

A lot of the time [ ] Rather less than I used to [ ]

From time to time but not too often [ ] Definitely less than I used to [ ]

Only occasionally [ ] Hardly at all [ ]

I feel cheerful: I get sudden feelings of panic:

Not at all [ ] Very often indeed [ ]

Not often [ ] Quite often [ ]

Sometimes [ ] Not very often [ ]

Most of the time [ ] Not at all [ ]

I can sit at ease and feel relaxed: I can enjoy a good book or radio or TV prog:

Definitely [ ] Often [ ]

Usually [ ] Sometimes [ ]

Not often [ ] Not often [ ]

Not at all [ ] Very seldom [ ]

SUPPORT FROM FAMILY AND FRIENDS

People help each other in different ways. Some of these are listed below. I would like to know how likely your family or friends would be to help you. I realise that you may rarely need this kind of help. But if you did, based on your experience in the last month, tick (ü ) one box in each section to show how likely your family or friends would....

tell you about the available choices and options to do with cancer

[ ] no one would do this [ ] someone might do this

[ ] someone would probably do this [ ] someone would certainly do this

give you a lift in a car if you needed one

[ ] no one would do this [ ] someone might do this

[ ] someone would probably do this [ ] someone would certainly do this

comfort you if you were upset

[ ] no one would do this [ ] someone might do this

[ ] someone would probably do this [ ] someone would certainly do this

show you that they understood how you were feeling

[ ] no one would do this [ ] someone might do this

[ ] someone would probably do this [ ] someone would certainly do this

give advice about what to do in relation to cancer

[ ] no one would do this [ ] someone might do this

[ ] someone would probably do this [ ] someone would certainly do this

show affection to you

[ ] no one would do this [ ] someone might do this

[ ] someone would probably do this [ ] someone would certainly do this

suggest how you could find out more about a situation

[ ] no one would do this [ ] someone might do this

[ ] someone would probably do this [ ] someone would certainly do this

help you decide what to do

[ ] no one would do this [ ] someone might do this

[ ] someone would probably do this [ ] someone would certainly do this

listen if you needed to talk about your feelings

[ ] no one would do this [ ] someone might do this

[ ] someone would probably do this [ ] someone would certainly do this

look after your belongings (house, pet, kids etc.) for a while

[ ] no one would do this [ ] someone might do this

[ ] someone would probably do this [ ] someone would certainly do this

give you reasons why you should or should not do something

[ ] no one would do this [ ] someone might do this

[ ] someone would probably do this [ ] someone would certainly do this

run an errand for you

[ ] no one would do this [ ] someone might do this

[ ] someone would probably do this [ ] someone would certainly do this

help you out with household chores (cooking, cleaning, laundry)

[ ] no one would do this [ ] someone might do this

[ ] someone would probably do this [ ] someone would certainly do this

help manage personal affairs (talk to other people for you, making appointments)

[ ] no one would do this [ ] someone might do this

[ ] someone would probably do this [ ] someone would certainly do this

be sympathetic if you were upset

[ ] no one would do this [ ] someone might do this

[ ] someone would probably do this [ ] someone would certainly do this

THE LAST PAGE

Sometimes even when people have good intentions, they say something or do something that upsets us. Below there is a list of some of these things.

Think about the period of time since you were diagnosed up until today.

How often did the following situations arise with your significant other/supporting person, that is the person you named in the earlier questionnaire?

If you did not name someone as your significant other/supporting person, please skip this section.

TICK (ü ) ONLY ONE BOX IN EACH SECTION

1. changes the subject when I try to discuss my illness

[ ] never [ ] rarely [ ] sometimes [ ] often [ ] very often

2. tells negative stories about other people who have cancer

[ ] never [ ] rarely [ ] sometimes [ ] often [ ] very often

3. doesn't understand my situation

[ ] never [ ] rarely [ ] sometimes [ ] often [ ] very often

4. avoids me

[ ] never [ ] rarely [ ] sometimes [ ] often [ ] very often

4. appears afraid to be around me

[ ] never [ ] rarely [ ] sometimes [ ] often [ ] very often

6. minimises my problems

[ ] never [ ] rarely [ ] sometimes [ ] often [ ] very often

7. seems to be hiding feelings

[ ] never [ ] rarely [ ] sometimes [ ] often [ ] very often

8. acts uncomfortable when I talk about my illness

[ ] never [ ] rarely [ ] sometimes [ ] often [ ] very often

9. trivialises my problems

[ ] never [ ] rarely [ ] sometimes [ ] often [ ] very often

10. tells me I look well when I don't

[ ] never [ ] rarely [ ] sometimes [ ] often [ ] very often

 

 

 

 

 

Thank you very much for completing this questionnaire and for your help with this study. I hope that you have found it interesting.

Please return it in the prepaid envelope or to the address on the cover.

With best wishes,

Janne Pearson

 

 

 

Name: ……………………..……. Patient's name: …………………………… Study No:

 

 

 

 

PATIENT INFORMATION STUDY

BEATSON ONCOLOGY CENTRE

 

FOLLOW-UP QUESTIONNAIRE FOR

SIGNIFICANT OTHER/SUPPORTING PERSON

About three months ago you very kindly agreed to help with this study by returning a questionnaire. You will remember that the study is examining different ways of giving patients information at the Beatson Oncology Centre. I now hope that you will be able to help again by completing this questionnaire and returning it in the enclosed prepaid envelope or to the address below. Some of the questions are the same as you completed three months ago. This allows us to see if things have changed over the last three months.

Thank you very much for your help with this project.

With best wishes,

Janne Pearson

 

 

 

Janne Pearson

Patient Information Study

C/o University of Glasgow

Dept of Public Health

1 Lilybank Gradens

Glasgow G12 8RZ

Tel: 0141 211 2588

Email: j.pearson@clinmed.gla.ac.uk

 

1. What types of information has the patient given you? (Tick (ü ) all boxes that apply.)

General information about the disease [ ]

Information about what type of cancer it is and where it is [ ]

Information about what is likely to happen in the near future [ ]

Information about their treatment [ ]

Information about their feelings [ ]

Information about their fears [ ]

All the time, i.e. a few times a day [ ]

Frequently, i.e. a few times a week [ ]

Sometimes, i.e. five or six times during the last month [ ]

Rarely, i.e. once or twice in the last month [ ]

Never [ ]

[ ] Very satisfied [ ] Satisfied ] No opinion [ ] Dissatisfied [ ] Very dissatisfied

[ ] don’t understand at all

PRINTED INFORMATION

6. We are particularly interested in printed information about cancer. Has the patient ever shown you any printed information? [ ] Yes [ ] No [ ] Can't remember

If no or can't remember, go to the questions on the last page.

7. Do you know if the printed information was:

(Tick (ü ) one box.)

[ ] given to the patient because they were in this study

[ ] obtained by the patient through some other contact

[ ] both

[ ] don't know

…………………………………………………………………………………………….

…………………………………………………………………………………………….

…………………………………………………………………………………………….

…………………………………………………………………………………………….

9. Did you find it? [ ] very useful [ ] moderately useful [ ] of no use

10. Did it tell you anything new? [ ] definitely yes [ ] not really

[ ] possibly [ ] definitely no

11. Was the information relevant? [ ] definitely yes [ ] not really

[ ] possibly [ ] definitely no

12. Were you able to find information easily? [ ] definitely yes [ ] not really

[ ] possibly [ ] definitely no

13. Did you feel overwhelmed with information? [ ] definitely yes [ ] not really

[ ] possibly [ ] definitely no

14. Did you find the information too technical? [ ] definitely yes [ ] not really

[ ] possibly [ ] definitely no

15. Did you find the information too limited? [ ] definitely yes [ ] not really

[ ] possibly [ ] definitely no

16. Did the information change your ideas [ ] definitely yes [ ] not really

about something? [ ] possibly [ ] definitely no

17. Was there any information that you expected that was not there? [ ] Yes [ ] No

18. If you have any comments on things that you particularly liked about the printed information that you saw, write them here.

19. If you have any comments on things that you particularly disliked about the printed information that you saw, write them here.

/continue overpage

EMOTIONS

Doctors are aware that emotions play an important part in most illnesses and amongst the relatives and friends of those with serious illness. This questionnaire is designed to help us know how you feel.

Read each item and tick (ü ) the box opposite the reply which comes closest to how you have been feeling in the past week.

Don’t take too long over your replies: your immediate reaction to each item will probably be more accurate than a long thought-out response.

TICK (ü ) ONLY ONE BOX IN EACH SECTION

I feel tense or ‘wound up’: I feel as if I am slowed down:

Most of the time [ ] Nearly all the time [ ]

A lot of the time [ ] Very often [ ]

Time to time, occasionally [ ] Sometimes [ ]

Not at all [ ] Not at all [ ]

I get a sort of frightened feeling like

I still enjoy the things I used to enjoy: ‘butterflies’ in the stomach:

Definitely as much [ ] Not at all [ ]

Not quite so much [ ] Occasionally [ ]

Only a little [ ] Quite often [ ]

Hardly at all [ ] Very often [ ]

I get a sort of frightened feeling as if

something awful is about to happen: I have lost interest in my appearance:

Very definitely and quite badly [ ] Definitely [ ]

Yes, but not too badly [ ] I don’t take much care as I should [ ]

A little, but it doesn’t worry me [ ] I may not take quite as much care [ ]

Not at all [ ] I take just as much care as ever [ ]

I can laugh and see the funny side of things: I feel restless as if I have to be on the move:

As much as I always could [ ] Very much indeed [ ]

Not quite so much now [ ] Quite a lot [ ]

Definitely not so much now [ ] Not very much [ ]

Not at all [ ] Not at all [ ]

Worrying thoughts go through my mind: I look forward with enjoyment to things:

A great deal of the time [ ] As much as ever I did [ ]

A lot of the time [ ] Rather less than I used to [ ]

From time to time but not too often [ ] Definitely less than I used to [ ]

Only occasionally [ ] Hardly at all [ ]

I feel cheerful: I get sudden feelings of panic:

Not at all [ ] Very often indeed [ ]

Not often [ ] Quite often [ ]

Sometimes [ ] Not very often [ ]

Most of the time [ ] Not at all [ ]

I can sit at ease and feel relaxed: I can enjoy a good book or radio or TV prog:

Definitely [ ] Often [ ]

Usually [ ] Sometimes [ ]

Not often [ ] Not often [ ]

Not at all [ ] Very seldom [ ]