| ARCHETYPE ID | openEHR-EHR-OBSERVATION.expanded_prostate_cancer_index_composite_test.v0 |
|---|---|
| Concept | expanded_prostate_cancer_index_composite_test |
| Description | A questionnaire used to measure the health-related quality of life (HRQoL) in patients with prostate cancer. |
| Use | Use to record the results from the questionnaire used to measure the health-related quality of life (HRQoL) in patients with prostate cancer. This archetype consists of all 51 elements in the EPIC 2.2002 version questionnaire, which by the copyright holders is identified as "Most Recent Version". As it is unchanged since then, it is considered stable and the archetype's name is without version identification. It there are future changes, a new version of the archetype will have to be made. The archetype can be used to also represent the 6.2002 version of EPIC Short Form (EPIC-26) in a template. See the example template in the CKMs 'Resource Centre'. Even though the question numbers differ between the full EPIC-51 form and the short EPIC-26 form, they share the same unique 'Item number', which can be found in each element's 'Annotations', in the Key attribute 'epic_item_id'. This, along with the additional 'Annotations' keys 'domain', 'subscale' and 'subscale2', allows data consumers to use the archetype as a look-up structure to orchestrate the data for further analysis. This can be especially useful to perform scoring as described in "Scoring Instructions for the Expanded Prostate cancer Index Composite" and "Scoring Instructions for the Expanded Prostate cancer Index Composite Short Form". In addition each element has identified the number each question appears as in the paper form as Keys in Annotation. The Annotations Keys are as follows:
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| Purpose | To record the results from the health-related quality of life (HRQoL) questionnaire in patients with prostate cancer. |
| References | Wei JT, Dunn RL, Litwin MS, Sandler HM, Sanda MG. Development and validation of the expanded prostate cancer index composite (EPIC) for comprehensive assessment of health-related quality of life in men with prostate cancer. Urology. 2000 Dec 20;56(6):899-905. doi: 10.1016/s0090-4295(00)00858-x. PMID: 11113727. Scoring Instructions for the Expanded Prostate cancer Index Composite (EPIC); https://medicine.umich.edu/sites/default/files/content/downloads/EPIC-Scoring-2.2002_0.pdf Skolarus TA, Dunn RL, Sanda MG, Chang P, Greenfield TK, Litwin MS, Wei JT; PROSTQA Consortium. Minimally important difference for the Expanded Prostate Cancer Index Composite Short Form. Urology. 2015 Jan;85(1):101-5. doi: 10.1016/j.urology.2014.08.044. PMID: 25530370; PMCID: PMC4274392. Scoring Instructions for the Expanded Prostate cancer Index Composite Short Form (EPIC-26). https://medicine.umich.edu/sites/default/files/content/downloads/Scoring%20Instructions%20for%20the%20EPIC%2026.pdf Most Recent Version of EPIC 2.2002 : https://medicine.umich.edu/sites/default/files/content/downloads/EPIC-2.2002.pdf The latest published version of EPIC-SF: https://medicine.umich.edu/sites/default/files/content/downloads/EPIC-SF-6.2002_0.pdf Norwegian translation: Fosså, S. D., Storås, A. H., Steinsvik, E. A., Myklebust, T. A., Eri, L. M., Loge, J. H., & Dahl, A. A. (2016). Psychometric testing of the Norwegian version of the Expanded Prostate Cancer Index Composite 26-item version (EPIC-26). Scandinavian Journal of Urology, 50(4), 280–285. https://doi.org/10.3109/21681805.2016.1163617 |
| Copyright | © openEHR Foundation |
| Authors | Author name: Vebjørn Arntzen Organisation: Oslo University Hospital, Norway Email: varntzen@ous-hf.no Date originally authored: 2024-08-26 |
| Other Details Language | Author name: Vebjørn Arntzen Organisation: Oslo University Hospital, Norway Email: varntzen@ous-hf.no Date originally authored: 2024-08-26 |
| Other Details (Language Independent) |
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| Keywords | prostate cancer, quality of life, QOL, PROM, EPIC-26, HRQoL |
| Lifecycle | in_development |
| UID | 23c6ba0e-2441-4626-83a3-a1ceea6f7da4 |
| Language used | en |
| Citeable Identifier | 1013.1.2529 |
| Revision Number | 0.0.1-alpha |
| events | |
| Any event | Any event: Scored before any treatment. |
| data | |
| Over the past 4 weeks, how often have you leaked urine? | Over the past 4 weeks, how often have you leaked urine?: Optional[{epic_item_id=23, subscale2=Incontinence, subscale=Urinary function, domain=Urinary, epic_2_2002_number=1, sf_6_2002_number=1}] 1: More than once per day 2: About once a day 3: More than once a week 4: About once a week 5: Rarely or never |
| Over the past 4 weeks, how often have you urinated blood? | Over the past 4 weeks, how often have you urinated blood?: Optional[{epic_item_id=24, subscale2=Urinary function, subscale=Irritative/Obstructive, domain=Urinary, original_form_number=2}] 1: More than once a day 2: About once a day 3: More than once a week 4: About once a week 5: Rarely or never |
| Over the past 4 weeks, how often have you had pain or burning with urination? | Over the past 4 weeks, how often have you had pain or burning with urination?: Optional[{epic_item_id=25, subscale2=Urinary function, subscale=Irritative/Obstructive, domain=Urinary, original_form_number=3}] 1: More than once a day 2: About once a day 3: More than once a week 4: About once a week 5: Rarely or never |
| Which of the following best describes your urinary control during the last 4 weeks? | Which of the following best describes your urinary control during the last 4 weeks?: Optional[{epic_item_id=26, subscale2=Urinary function, subscale=Incontinence, domain=Urinary, original_form_number=4, short_form_number=2}] 1: No urinary control whatsoever. 2: Frequent dribbling 3: Occasional dribbling 4: Total control |
| How many pads or adult diapers per day did you usually use to control leakage during the last 4 weeks? | How many pads or adult diapers per day did you usually use to control leakage during the last 4 weeks?: Optional[{epic_item_id=27, subscale2=Urinary function, subscale=Incontinence, domain=Urinary, original_form_number=5, short_form_number=3}] 0: None 1: 1 pad per day 2: 2 pads per day 3: 3 or more pads per day |
| How big a problem, if any, had each of the following been for you during the last 4 weeks? | How big a problem, if any, had each of the following been for you during the last 4 weeks?: A header question, with answers to be recorded in the elements within the Cluster only. |
| Dripping or leaking urine | Dripping or leaking urine: Optional[{epic_item_id=28, subscale2=Urinary bother, subscale=Incontinence, domain=Urinary, original_form_number=6a, short_form_number=4a}] 0: No problem 1: Very Small Problem 2: Small Problem 3: Moderate Problem 4: Big Problem |
| Pain or burning on urination | Pain or burning on urination: Optional[{epic_item_id=29, subscale2=Irritative/Obstructive, subscale=Urinary bother, domain=Urinary, original_form_number=6b, short_form_number=4b}] 0: No problem 1: Very Small Problem 2: Small Problem 3: Moderate Problem 4: Big Problem |
| Bleeding with urination | Bleeding with urination: Optional[{epic_item_id=30, subscale2=Irritative/Obstructive, subscale=Urinary bother, domain=Urinary, original_form_number=6c, short_form_number=4c}] 0: No Problem 1: Very Small Problem 2: Small Problem 3: Moderate Problem 4: Big Problem |
| Weak urine stream or incomplete emptying | Weak urine stream or incomplete emptying: Optional[{epic_item_id=31, subscale2=Irritative/Obstructive, subscale=Urinary bother, domain=Urinary, original_form_number=6d, short_form_number=4d}] 0: No Problem 1: Very Small Problem 2: Small Problem 3: Moderate Problem 4: Big Problem |
| Waking up to urinate | Waking up to urinate: Optional[{epic_item_id=32, subscale2=Irritative/Obstructive, subscale=Urinary bother, domain=Urinary, original_form_number=6e}] 0: No Problem 1: Very Small Problem 2: Small Problem 3: Moderate Problem 4: Big Problem |
| Need to urinate frequently during the day | Need to urinate frequently during the day: Optional[{epic_item_id=33, subscale2=Irritative/Obstructive, subscale=Urinary bother, domain=Urinary, original_form_number=6f, short_form_number=4e}] 0: No Problem 1: Very Small Problem 2: Small Problem 3: Moderate Problem 4: Big Problem |
| Overall, how big a problem has your urinary function been for you during the last 4 weeks? | Overall, how big a problem has your urinary function been for you during the last 4 weeks?: Optional[{epic_item_id=34, subscale=Urinary bother, domain=Urinary, original_form_number=7, short_form_number=5}] 1: No problem 2: Very small problem 3: Small problem 4: Moderate problem 5: Big problem |
| How often have you had rectal urgency (felt like I had to pass stool, but did not) during the last 4 weeks? | How often have you had rectal urgency (felt like I had to pass stool, but did not) during the last 4 weeks?: Optional[{epic_item_id=42, subscale=Bowel function, domain=Bowel, original_form_number=8}] 1: More than once a day 2: About once a day 3: More than once a week 4: About once a week 5: Rarely or never |
| How often have you had uncontrolled leakage of stool or feces? | How often have you had uncontrolled leakage of stool or feces?: Optional[{epic_item_id=43, subscale=Bowel function, domain=Bowel, original_form_number=9}] 1: More than once a day 2: About once a day 3: More than once a week 4: About once a week 5: Rarely or never |
| How often have you had stools (bowel movements) that were loose or liquid (no form, watery, mushy) during the last 4 weeks? | How often have you had stools (bowel movements) that were loose or liquid (no form, watery, mushy) during the last 4 weeks?: Optional[{epic_item_id=44, subscale=Bowel function, domain=Bowel, original_form_number=10}] 1: More than once a day 2: About once a day 3: More than once a week 4: About once a week 5: Rarely or never |
| How often have you had bloody stools during the last 4 weeks? | How often have you had bloody stools during the last 4 weeks?: Optional[{epic_item_id=45, subscale=Bowel function, domain=Bowel, original_form_number=11}] 1: More than once a day 2: About once a day 3: More than once a week 4: About once a week 5: Rarely or never |
| How often have your bowel movements been painful during the last 4 weeks? | How often have your bowel movements been painful during the last 4 weeks?: Optional[{epic_item_id=46, subscale=Bowel function, domain=Bowel, original_form_number=12}] 1: More than once a day 2: About once a day 3: More than once a week 4: About once a week 5: Rarely or never |
| How many bowel movements have you had on a typical day during the last 4 weeks? | How many bowel movements have you had on a typical day during the last 4 weeks?: Optional[{epic_item_id=47, subscale=Bowel function, domain=Bowel, original_form_number=13}] 1: Two or less 2: Three to four 3: Five or more |
| How often have you had crampy pain in your abdomen, pelvis or rectum during the last 4 weeks? | How often have you had crampy pain in your abdomen, pelvis or rectum during the last 4 weeks?: Optional[{epic_item_id=48, subscale=Bowel function, domain=Bowel, original_form_number=14}] 1: More than once a day 2: About once a day 3: More than once a week 4: About once a week 5: Rarely or never |
| How big a problem, if any, has each of the following been for you? | How big a problem, if any, has each of the following been for you?: A header question, with answers to be recorded in the elements within the Cluster only. |
| Urgency to have a bowel movement | Urgency to have a bowel movement: Optional[{epic_item_id=49, subscale=Bowel bother, domain=Bowel, original_form_number=15a, short_form_number=6a}] 0: No Problem 1: Very Small Problem 2: Small Problem 3: Moderate Problem 4: Big Problem |
| Increased frequency of bowel movements | Increased frequency of bowel movements: Optional[{epic_item_id=50, subscale=Bowel bother, domain=Bowel, original_form_number=15b, short_form_number=6b}] 0: No Problem 1: Very Small Problem 2: Small Problem 3: Moderate Problem 4: Big Problem |
| Watery bowel movements | Watery bowel movements: Optional[{epic_item_id=51, subscale=Bowel bother, domain=Bowel, original_form_number=15c}] 0: No Problem 1: Very Small Problem 2: Small Problem 3: Moderate Problem 4: Big Problem |
| Losing control of your stools | Losing control of your stools: Optional[{epic_item_id=52, subscale=Bowel bother, domain=Bowel, original_form_number=15d, short_form_number=6c}] 0: No Problem 1: Very Small Problem 2: Small Problem 3: Moderate Problem 4: Big Problem |
| Bloody stools | Bloody stools: Optional[{epic_item_id=53, subscale=Bowel bother, domain=Bowel, original_form_number=15e, short_form_number=6d}] 0: No Problem 1: Very Small Problem 2: Small Problem 3: Moderate Problem 4: Big Problem |
| Abdominal/Pelvic/Rectal pain | Abdominal/Pelvic/Rectal pain: Optional[{epic_item_id=54, subscale=Bowel bother, domain=Bowel, original_form_number=15f, short_form_number=6e}] 0: No Problem 1: Very Small Problem 2: Small Problem 3: Moderate Problem 4: Big Problem |
| Overall, how big a problem have your bowel habits been for you during the last 4 weeks? | Overall, how big a problem have your bowel habits been for you during the last 4 weeks?: Optional[{epic_item_id=55, subscale=Bowel bother, domain=Bowel, original_form_number=16, short_form_number=7}] 1: No problem 2: Very small problem 3: Small problem 4: Moderate problem 5: Big problem |
| How would you rate each of the following during the last 4 weeks? | How would you rate each of the following during the last 4 weeks?: A header question, with answers to be recorded in the elements within the Cluster only. |
| Level of sexual desire | Level of sexual desire: Optional[{epic_item_id=56, subscale=Sexual function, domain=Sexual, original_form_number=17a}] 1: Very Poor to None 2: Poor 3: Fair 4: Good 5: Very Good |
| Your ability to have an erection | Your ability to have an erection: Optional[{epic_item_id=57, subscale=Sexual function, domain=Sexual, original_form_number=17b, short_form_number=8a}] 1: Very Poor to None 2: Poor 3: Fair 4: Good 5: Very Good |
| Your ability to reach orgasm (climax) | Your ability to reach orgasm (climax): Optional[{epic_item_id=58, subscale=Sexual function, domain=Sexual, original_form_number=17c, short_form_number=8b}] 1: Very Poor to None 2: Poor 3: Fair 4: Good 5: Very Good |
| How would you describe the usual QUALITY of your erections during the last 4 weeks? | How would you describe the usual QUALITY of your erections during the last 4 weeks?: Optional[{epic_item_id=59, subscale=Sexual function, domain=Sexual, original_form_number=18, short_form_number=9}] 1: None at all 2: Not firm enough for any sexual activity 3: Firm enough for masturbation and forplay only 4: Firm enough for intercourse |
| How would you describe the FREQUENCY of your erections during the last 4 weeks? | How would you describe the FREQUENCY of your erections during the last 4 weeks?: Optional[{epic_item_id=60, subscale=Sexual function, domain=Sexual, original_form_number=19, short_form_number=10}] 1: I NEVER had an erection when I wanted one 2: I had an erection LESS THAN HALF the time I wanted one 3: I had an erection ABOUT HALF the time I wanted one 4: I had an erection MORE THAN HALF the time I wanted one 5: I had an erection WHENEVER I wanted one |
| How often have you awakened in the morning or night with an erection during the last 4 weeks? | How often have you awakened in the morning or night with an erection during the last 4 weeks?: Optional[{epic_item_id=61, subscale=Sexual function, domain=Sexual, original_form_number=20}] 1: Never 2: Less than once a week 3: About once a week 4: Several times a week 5: Daily |
| During the last 4 weeks, how often did you have any sexual activity? | During the last 4 weeks, how often did you have any sexual activity?: Optional[{epic_item_id=62, subscale=Sexual function, domain=Sexual, original_form_number=21}] 1: Not at all 2: Less than once a week 3: About once a week 4: Several times a week 5: Daily |
| During the last 4 weeks, how often did you have sexual intercourse? | During the last 4 weeks, how often did you have sexual intercourse?: Optional[{epic_item_id=63, subscale=Sexual function, domain=Sexual, original_form_number=22}] 1: Not at all 2: Less than once a week 3: About once a week 4: Several times a week 5: Daily |
| Overall, how would you rate your ability to function sexually during the last 4 weeks? | Overall, how would you rate your ability to function sexually during the last 4 weeks?: Optional[{epic_item_id=64, subscale=Sexual function, domain=Sexual, original_form_number=23, short_form_number=11}] 1: Very poor 2: Poor 3: Fair 4: Good 5: Very good |
| How big a problem during the last 4 weeks, if any, has each of the following been for you? | How big a problem during the last 4 weeks, if any, has each of the following been for you?: A header question, with answers to be recorded in the elements within the Cluster only. |
| Your level of sexual desire | Your level of sexual desire: Optional[{epic_item_id=65, subscale=Sexual bother, domain=Sexual, original_form_number=24a}] 1: No problem 2: Very small problem 3: Small problem 4: Moderate problem 5: Big problem |
| Your ability to have an erection | Your ability to have an erection: Optional[{epic_item_id=66, subscale=Sexual bother, domain=Sexual, original_form_number=24b}] 1: No problem 2: Very small problem 3: Small problem 4: Moderate problem 5: Big problem |
| Your ability to reach an orgasm | Your ability to reach an orgasm: Optional[{epic_item_id=67, subscale=Sexual bother, domain=Sexual, original_form_number=24c}] 1: No problem 2: Very small problem 3: Small problem 4: Moderate problem 5: Big problem |
| Overall, how big a problem has your sexual function or lack of sexual function been for you during the last 4 weeks? | Overall, how big a problem has your sexual function or lack of sexual function been for you during the last 4 weeks?: Optional[{epic_item_id=68, subscale=Sexual bother, domain=Sexual, original_form_number=25, short_form_number=12}] 1: No problem 2: Very small problem 3: Small problem 4: Moderate problem 5: Big problem |
| Over the last 4 weeks, how often have you experienced hot flashes? | Over the last 4 weeks, how often have you experienced hot flashes?: Optional[{epic_item_id=69, subscale=Hormonal function, domain=Hormonal, original_form_number=26}] 1: More than once a day 2: About once a day 3: More than once a week 4: About once a week 5: Rarely or never |
| How often have you had breast tenderness during the last 4 weeks? | How often have you had breast tenderness during the last 4 weeks?: Optional[{epic_item_id=70, subscale=Hormonal function, domain=Hormonal, original_form_number=27}] 1: More than once a day 2: About once a day 3: More than once a week 4: About once a week 5: Rarely or never |
| During the last 4 weeks, how often have you felt depressed? | During the last 4 weeks, how often have you felt depressed?: Optional[{epic_item_id=71, subscale=Hormonal function, domain=Hormonal, original_form_number=28}] 1: More than once a day 2: About once a day 3: More than once a week 4: About once a week 5: Rarely or never |
| During the last 4 weeks, how often have you felt a lack of energy? | During the last 4 weeks, how often have you felt a lack of energy?: Optional[{epic_item_id=72, subscale=Hormonal function, domain=Hormonal, original_form_number=29}] 1: More than once a day 2: About once a day 3: More than once a week 4: About once a week 5: Rarely or never |
| How much change in your weight have you experienced during the last 4 weeks, if any? | How much change in your weight have you experienced during the last 4 weeks, if any?: Optional[{epic_item_id=73, subscale=Hormonal function, domain=Hormonal, original_form_number=30}] 1: Gained 10 pounds or more 2: Gained less than 10 pounds 3: No change in weight 4: Lost less than 10 pounds 5: Lost 10 pounds or more |
| How big a problem during the last 4 weeks, if any, has each of the following been for you? | How big a problem during the last 4 weeks, if any, has each of the following been for you?: A header question, with answers to be recorded in the elements within the Cluster only. |
| Hot flashes | Hot flashes: Optional[{epic_item_id=74, subscale=Hormonal bother, domain=Hormonal, original_form_number=31a, short_form_number=13a}] 0: No Problem 1: Very Small Problem 2: Small Problem 3: Moderate Problem 4: Big Problem |
| Breast tenderness/enlargement | Breast tenderness/enlargement: Optional[{epic_item_id=75, subscale=Hormonal bother, domain=Hormonal, original_form_number=31b, short_form_number=13b}] 0: No Problem 1: Very Small Problem 2: Small Problem 3: Moderate Problem 4: Big Problem |
| Loss of body hair | Loss of body hair: Optional[{epic_item_id=76, subscale=Hormonal bother, domain=Hormonal, original_form_number=31c}] 0: No Problem 1: Very Small Problem 2: Small Problem 3: Moderate Problem 4: Big Problem |
| Feeling depressed | Feeling depressed: Optional[{epic_item_id=77, subscale=Hormonal bother, domain=Hormonal, original_form_number=31d, short_form_number=13c}] 0: No Problem 1: Very Small Problem 2: Small Problem 3: Moderate Problem 4: Big Problem |
| Lack of energy | Lack of energy: Optional[{epic_item_id=78, subscale=Hormonal bother, domain=Hormonal, original_form_number=31e, short_form_number=13d}] 0: No Problem 1: Very Small Problem 2: Small Problem 3: Moderate Problem 4: Big Problem |
| Change in body weight | Change in body weight: Optional[{epic_item_id=79, subscale=Hormonal bother, domain=Hormonal, original_form_number=31f, short_form_number=13e}] 0: No Problem 1: Very Small Problem 2: Small Problem 3: Moderate Problem 4: Big Problem |
| Overall, how satisfied are you with the treatment you received for your prostate cancer? | Overall, how satisfied are you with the treatment you received for your prostate cancer?: Optional[{epic_item_id=80, original_form_number=32}] 1: Extremely dissatified 2: Dissatisfied 3: Uncertain 4: Satisfied 5: Extremely satisfied |
| Other contributors | |
| Translators |