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APPENDIX L TREATMENT FOLLOW-UP FORM

appendix l treatment follow-up form - IMPACT Study Homepage

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<strong>APPENDIX</strong> L<br />

<strong>TREATMENT</strong> <strong>FOLLOW</strong>-<strong>UP</strong> QUESTIONNAIRE<br />

Centre Code:<br />

Study Number:<br />

Date of Birth: - - Initials:<br />

Day Month Year<br />

The IMPACT Study: Identification of Men with a genetic predisposition to<br />

ProstAte Cancer: Targeted screening in BRCA1/2 mutation carriers and<br />

controls.<br />

<strong>TREATMENT</strong> <strong>FOLLOW</strong>-<strong>UP</strong> <strong>FORM</strong><br />

Thank you for collaborating in the IMPACT study. Your patient has been diagnosed<br />

with prostate cancer and last year you sent information about the types of treatment<br />

and investigations he has received. Please could you complete this short follow-up<br />

form to update us about any new treatments or investigations he has received. All of<br />

this information is strictly confidential and will only be used for the IMPACT study.<br />

If you have any queries please contact:<br />

Ms Elizabeth Bancroft<br />

Research Nurse<br />

Cancer Genetics Unit<br />

Royal Marsden Hospital<br />

Downs Road, Sutton Surrey SM2 5PT UK<br />

Tel: +44 (0)207 808 2136<br />

Fax: +44 (0)208 770 1489<br />

Email: elizabeth.bancroft@rmh.nhs.uk


Thank you for completing this questionnaire


Date of Completed Treatment Questionnaire (Data Centre to complete):<br />

- -<br />

Day Month Year<br />

1. Date of last visit: - -<br />

Day Month Year<br />

2. Please record all PSA values since last visit:<br />

Date<br />

PSA value<br />

3. Has the patient had disease recurrence?<br />

No<br />

Yes<br />

If yes, please tick as appropriate:<br />

.<br />

Biochemical Recurrence (PSA only)<br />

Local recurrence<br />

Metastatic disease: Bone Other<br />

Radical Prostatectomy only<br />

Radical Prostatectomy and adjuvant radiation therapy<br />

Prostatectomy and radiotherapy and hormones<br />

Radiotherapy alone<br />

Radiotherapy and adjuvant androgen ablation<br />

Brachytherapy<br />

Cryoablation Therapy<br />

High-Intensity Focused Ultrasonography (HIFU)<br />

Other<br />

4. Please list of any of the following that have occurred in the last year:<br />

< 6 months<br />

> 6 months<br />

Type of Imaging Date of report Result (please enclose copies of<br />

reports*)<br />

CT Scan 1)<br />

2)


MRI 1)<br />

2)<br />

Transrectal Ultrasound 1)<br />

(TRUS) 2)<br />

Bone Scan 1)<br />

2)<br />

IVP 1)<br />

(Intravenous Pyleogram) 2)<br />

Over the past month,<br />

how often have you…<br />

1. …had a sensation of<br />

your bladder<br />

Not at<br />

all<br />

Less than 1<br />

time in 5<br />

Less than<br />

half the<br />

time<br />

About<br />

half the<br />

time<br />

More than<br />

half the<br />

time<br />

0 1 2 3 4 5<br />

Almost<br />

always<br />

Score<br />

Other 1)<br />

2)<br />

* Please remove any patient identifiers from imaging reports and replace with IMPACT study number.<br />

5. Please ask the patient to score the following urinary symptoms:


1. How do you rate your<br />

Very Low Medium High<br />

confidence that you could get<br />

low<br />

completely emptying<br />

and keep an erection?<br />

1 2<br />

3<br />

4<br />

after you finished<br />

urinating?<br />

2. When you had erections No sexual Almost A few times Sometimes Most times<br />

with sexual stimulation, how activity never or (much less (about (much more<br />

2. …had to urinate 0 1 2 3 4 5<br />

often were you erections hard<br />

never than half the half the than half the<br />

again less than two<br />

enough for penetration<br />

time) time) time)<br />

hours after you<br />

(entering your partner)?<br />

0<br />

1 2<br />

3<br />

4<br />

finished urinating?<br />

3. During sexual intercourse, No sexual Almost A few times Sometimes Most times<br />

3. …stopped and 0 1 2 3 4 5<br />

how often were you able to activity never or (much less (about (much more<br />

started again several<br />

maintain your erection after<br />

never than half the half the than half the<br />

times while urinated?<br />

you had penetrated (entered)<br />

time) time) time)<br />

4. …found it difficult 0 1 2 3 4 5<br />

your partner<br />

0<br />

1 2<br />

3<br />

4<br />

to postpone urination?<br />

4. During sexual intercourse, Did not Extreme Very Difficult Slightly<br />

5. …had a weak 0 1 2 3 4 5<br />

how difficult was it to<br />

attempt ly difficult<br />

difficult<br />

urinary stream<br />

maintain your erection to intercourse difficult<br />

6. …had to push or 0 1 2 3 4 5<br />

completion of intercourse?<br />

0<br />

1 2<br />

3<br />

4<br />

strain to begin<br />

5. When you attempted sexual No sexual Almost A few times Sometimes Most times<br />

urination<br />

intercourse, how often was it activity never or (much less (about (much more<br />

None Once Twice 3 times 4 times 5 times<br />

satisfactory for you?<br />

never than half the half the than half the<br />

or more<br />

time) time) time)<br />

7. Over the last month 0 1<br />

0<br />

2<br />

1<br />

3<br />

2<br />

43<br />

5<br />

4<br />

how many times did<br />

SCORE<br />

you typically get up to<br />

urinate from the time<br />

you went to bed at<br />

night until you got up<br />

in the morning?<br />

Very<br />

high<br />

5<br />

Almost<br />

always<br />

or<br />

always<br />

5<br />

Almost<br />

always<br />

or<br />

always<br />

5<br />

Not<br />

difficult<br />

5<br />

Almost<br />

always<br />

or<br />

always<br />

5<br />

Total Score ________<br />

0 – no symptoms<br />

1-7 indicate mild symptoms of an enlarged prostate<br />

8-19 indicates moderate symptoms of an enlarged prostate<br />

20-35 indicates severe symptoms<br />

6. Please ask the patient to score the following questions about sexual function:<br />

Total Score ________<br />

(If the score is 21 or less the patient may be showing signs of erectile dysfunction)<br />

7. Please complete the below:<br />

Assessment for Late Side-Effects after Radiotherapy (Score symptoms over the last 4 weeks)<br />

Please circle appropriate response<br />

URINARY SYMPTOMS (excluding urinary tract infections)<br />

Average daytime frequency Nocturia Incontinence<br />

1. >2 hourly 1. 0-1 times 1. None<br />

2. 2 hourly 2. 2-3 times 2. Occasional incontinence<br />

3. 1-2 hourly (no treatment) 3. 4-5 times 3. Frequent incontinence<br />

4. 1-2 hourly (simple out-patient 4. 6-8 times requiring use of pads<br />

management) 5. >8 times 9. Unknown<br />

5.


RTOG Gradings for late side effects after radiotherapy (Score symptoms over the last 4 weeks)<br />

Please Grade 0-5<br />

Grading System<br />

Grade 0 – no symptoms<br />

Grade 1 – minor symptoms requiring no treatment<br />

Diarrhoea ______ Grade 2 – symptoms responding to simple outpatient management,<br />

lifestyle (performance status not affected)<br />

Proctitis ______ Grade 3 – distressing symptoms altering patient’s lifestyle performance<br />

status). Hospitalisation for diagnosis or minor surgical<br />

Cystitis ______ intervention (such as urethral dilation) may be required<br />

Haematuria ______<br />

Grade 4 – major surgical intervention (such as laparotomy, colostomy,<br />

cystectomy) or prolonged hospitalisation required<br />

Grade 5 – fatal complications<br />

Diarrhoea is defined as a clinical syndrome characterised by frequent loose bowel movements without associated<br />

rectal irriation (tenesmus)<br />

Proctitis is defined as a clinical syndrome characterised by rectal irritation or urgency (tenesmus), presence of musus<br />

or blood in the stool and, in some patients, with frequent, sometimes looses, bowel movements.<br />

Cystitis is difined as a syndrome characterised by irritative bladder symptoms such as frequency and dysuria.<br />

Haematuria may or may not be part of the clinical picture of cystitis.<br />

Please sign and below & enter the date of completion – thank you.<br />

Signed …………………………………………………………….<br />

Date - -<br />

Day Month Year

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