Sexual Health Data Standards Phase 2

Transcription

1 For reference only Do Not Use For more information contact: Sexual Health Data Standards Phase 2 September 2007 National Clinical Dataset Development Programme (NCDDP) Support Team Information Services Area 74A Gyle Square 1 South Gyle Crescent Edinburgh EH12 9EB Tel: to: NCDDPsupportteam@isd.csa.scot.nhs.uk Website:

2 Contents Overview & Background 4 Overview 4 Sexual Health Data Standards 5 Background to NCDDP 5 Generic Data Standards 5 Clinical Terminology 6 Date Recording 6 Published Data Standards 7 Items Developed in Sexual Health Phase 1 7 Standards Due for Consultation 7 1. Examination Examination Performed (Examination) Reason Examination Not Performed (Examination) Examination Outcome (Examination) 9 Reference Table of Examinations Specific to Sexual Health Pubic Examination Abnormal Findings Groin Skin Examination Abnormal Findings Lymph Node Examination Abnormal Findings Penile Examination Findings Scrotal Skin Examination Abnormal Findings Scrotal Contents Examination Findings Perianal Inspection Abnormal Findings Digital Rectal Examination Findings Prostate Examination by Digital Rectal Examination Abnormal Findings Prostate Size (Estimated) by Digital Rectal Examination Proctoscopy Abnormal Findings Vulval Examination Abnormal Findings Vaginal Speculum Examination Findings Cervix Visualised Intra-uterine Device/System Threads Visualised Vaginal Digital Examination Abnormal Findings Bimanual Abdominal/Vaginal Examination Abnormal Findings Uterine Position Uterine Size Uterine Gestational Size (Estimated) Uterine Mobility Uterus Sounded Utero-Cervical Length a Colposcopic Examination Abnormal Findings b Colposcopic Examination Squamocolumnar Junction Visualisation c Colposcopic Opinion d Transformation Zone Classification Cervix Biopsy Type Colposcopic Procedure/Treatment Performed Type Reason for Referral {Colposcopy} 26 Reference Table of Examinations Specific to Syphilis Tanner Stage Pubic Hair Tanner Stage Male Genital Tanner Stage Female Breast Sexual Partner Notification 29 Sexual Health Data Standards Phase 2 2

3 2.1 Sexual Partner Notification - Infection Type Sexual Partner Notification Period of Infection Concern Sexual Partner Notification Eligible Contacts (Number) Sexual Partner Notification Traceable Contacts (Number) Sexual Partner Notification Agreement Sexual Partner Notification Infection Disclosure Agreement Sexual Partner Notification Reason Declined Sexual Partner Notification Mode Sexual Partner Notification Contact Status Sexual Partner Notification Outcome Sexual Partner Test Status Sexual Partner Infection Status Sexual Partner Infection Treatment Status Sexual History Sexual Contact (Age at First Instance) Consent to Sexual Contact Sexual Partner Suspected of Sexually Transmitted Infection Sexual Partner Relationship Type Men s Health Symptom Presence (Male Genitourinary-Related) {Sexual Health} Symptom Type (Male Genitourinary-Related) {Sexual Health} Child Protection Issues and Competency Parent/Guardian Aware of Care Contact Parent/Guardian Involvement Discussed Detrimental Implications of Withholding Care Sexual Contact Likely Child Protection Concern(s) Indicator Risk Assessment Conducted (Risk Assessment) Person Understanding of Information Contraception Details Contraception Satisfactorily Used Contraception Offered Attendance Details Reason for Attending {Sexual Health} Education/Advice Topic(s) {Sexual Health} Chaperone Chaperone Offered (Impartial Observer) Chaperone Present (Impartial Observer) 48 Appendix 1 - Working Group Membership 49 Membership of the Sexual Health Data Standards Working Group 49 Appendix 2 - Consultation Distribution List 50 Sexual Health Data Standards Phase 2 3

4 Overview & Background Overview The Sexual Health Data Standards were developed to support the work of the National Sexual Health System (NaSH) in procuring and implementing an IT system across Scotland. These data standards ensure a national approach to the collection of clinical and non-clinical data items relating to sexual health. A Sexual Health Clinical Working Group was established in July 2006 to progress this work, supported by the National Clinical Dataset Development Programme (NCDDP) Support Team in Information Services (ISD). Following a review of the NHSScotland National ehealth Strategy and the ehealth Programme Board s decision to accelerate the acquisition of an information system to support Sexual Health services it was decided that a phased approach to developing the Sexual Health Data Standards would be required. Phase 1 of the work was completed and approved in March This document addresses the standards developed in the 2 nd and final phase of the work. The Sexual Health Data Standards will: Define common data items recommended for collection in a wide variety of clinical settings Support the exchange of patient information between healthcare providers Support the consistent recording of patient information throughout NHS Scotland and its partner agencies. It is important to emphasise that these are data standards rather than a dataset. This means that the individual data items included in this document are not required to be recorded together in a single clinical information system. For example it may not be necessary to record every item for every person subject to their sexual health assessment. However, where it is considered appropriate to record a particular data item as part of a person s sexual health assessment, the information should be recorded in accordance with the nationally agreed standard. Some data items may only be appropriate for use by clinicians within certain specialist settings and therefore would not be used by a clinician outwith such a setting. The data standards contain data items from Generic Data Standards and other Clinical Datasets, which have previously been developed through the NCDDP and are freely available in the Clinical Datasets section of the web-based Health & Social Care Data Dictionary. We are now seeking feedback from the wider clinical community in order to ensure that these data standards are fit for purpose. We invite all interested organisations and individuals to take part in this consultation by completing the attached Consultation Response Form and then returning it to NCDDPsupportteam@isd.csa.scot.nhs.uk. Comments on all or any part of the document are welcome. Some background information on the NCDDP and the Data Standards development can be found below. If you have any further queries, please go to our website: or contact NCDDPsupportteam@isd.csa.scot.nhs.uk. Sexual Health Data Standards Phase 2 4

5 Sexual Health Data Standards The membership of the Sexual Health Data Standards Clinical Working Group is shown in Appendix 1. This group agreed the inclusion of individual data items concerning sexual health using the following criteria: Is the data item one which would reasonably be expected to be collected for people in contact with sexual health services in a variety of settings? Will it prevent unnecessary duplication of data recording? Is the data item one which would be used by the sexual health service to ensure appropriate care, including health promotion? Is the data item one which is necessary to support public health monitoring and national policy implementation? Once consultation is complete the Sexual Health Data Standards will be submitted to the NCDD Programme Board for formal approval as a national standard. Once approved the Sexual Health Data Standards will be freely and widely available through publication in the Health & Social Care Data Dictionary. As far as possible they are UK compatible. It is expected that the Sexual Health Data Standards will be implemented within existing and emerging national clinical information systems and commercially procured national products, as well as being available to commercial developers to ensure the ability of their systems to support national information requirements. Following approval, the Sexual Health Data Standards will be reviewed every two years to ensure that they remain fit for purpose. Background to NCDDP The National Clinical Dataset Development Programme (NCDDP) supports clinicians to develop sets of interoperable national datasets to facilitate the implementation of the integrated care records across NHS Scotland. These standards will: Support direct patient care, by reflecting current best practice guidance Facilitate effective communication between health care professionals Improve data quality and support secondary data requirements where possible including data to support clinical governance Be freely and widely available through publication in the web-based Health & Social Care Data Dictionary Incorporate agreed national clinical definitions and implement national terminology Be UK compatible where possible The Chief Medical Officer established the programme in 2003 to support clinicians developing national clinical data standards, initially to support the national priority areas. These standards are an essential element of the Electronic Health Record, a central aim of the National e-health Strategy. More information can be found on our website: Generic Data Standards Data standards which are relevant to all patients and are used across specialties, disciplines and settings have already been developed by other clinical working groups and approved as national data standards for NHS Scotland. Those data items identified by the Sexual Health Working Group as appropriate for inclusion in their dataset are listed in this document for information. The full details of these existing standards are published on the web-based Health and Social Care Data Dictionary. Sexual Health Data Standards Phase 2 5

6 Clinical Terminology The strategic standard for clinical terminology in NHS Scotland is SNOMED-Clinical Terms. This means that over the next few years, clinical information systems will progress to record clinical data using this international standard. The NCDDP Support Team will commence in the near future development of recommended SNOMED CT specifications as part of the data standards and datasets it supports. Date Recording It is good record-keeping practice always to identify the date of recording of any clinical information. It is expected that all clinical information systems should include date stamping as standard functionality; therefore the Sexual Health Data Standards do not deal with this issue. In many clinical situations, the date of an event, investigation, etc is required for clinical purposes and should be visible to the health care professional. This date may not be the same as the date on which the data are entered onto the system. In these instances the system must allow the health care professional to enter whichever date is appropriate. These issues must be addressed during system specification and development. The date format for storage and management within a system should conform to the Government Data Standards Catalogue format: CCYY-MM-DD. However, this does not preclude entry or display of data on the user interface using the traditional DD-MM-CCYY format. An example of a date & time in correct format is: T19:20:30+01:00 (CCYY-MM-DDThh: mmtzd). It is recommended that a time should always be recorded with the appropriate date and not on its own, however it may not be necessary to display the date along with the time. This is of particular importance where any calculations or analyses are likely to be performed. Automated times recorded by IT systems should include all elements of the time, i.e. hour, minutes and seconds, and are expected to be actual. Where times are entered manually, it is likely that only the hours and minutes will be required, although in some circumstances only hours may be required. Time, or any element of the time (hours, minutes or seconds) may be actual or estimated. In some circumstances only an actual time may be acceptable, whilst in others an estimated time may be allowed. In the latter situation, it may be necessary to identify whether the time recorded is actual or estimated. Times identified as actual may be used in calculations and analyses. Times marked as estimated should be treated with caution and the implications of undertaking any calculations or analyses should be considered in the particular context within which the time is recorded or to be made subsequent use of. Where an estimated time is allowed, the appropriate degree of verification detail required should be decided, again dependent on the context in which it is recorded and how the time is to be used. Government Data Standards Catalogue 1. All times must be expressed in the 24 hour clock format, e.g. one minute past midnight is 00:01: Values of any element less than 10 should be entered with a zero in the first position. 3. All times for UK transactions/ events will be assumed to be GMT. 4. Systems should record whether the time is Coordinated Universal Time or British Summer Time in the Time zone designator. This will allow time elapsed to be calculated correctly, for example for A&E waiting times Sexual Health Data Standards Phase 2 6

7 Published Data Standards Items Developed in Sexual Health Phase 1 Sexual History Sexual Activity Status (Lifetime) Sexual Activity Status (Current) Sexual Partners (Number of Previous) Sexual Partner(s) (Gender of Previous) New Sexual Partner in Last 3 Months Blood Borne Virus Risk Factors Injecting Drugs Use Status Shared Injecting Equipment Ever Sexual Partner Injected Drug Use Non-professional Tattoo or Piercing Iatrogenic Exposure to Blood Borne Viruses Overseas New Sexual Partner in Last 12 Months Donated Blood History Condom Use Previous Blood Transfusion History Sexual Contact (Date of Last) Contact with Partner with HIV and/ or Viral Hepatitis Sex with Overseas National HIV Test Status Sex Without Consent History of Specific Investigation (HIV Antibody Test) Sexual Contact Involving Payment Personal History of Hepatitis B Immunisation Sexual Activity Type(s) Reason Never Had Hepatitis B Immunisation Sexual Activity (Geographical Location) Specific Immunisation Stage (Hepatitis B) Sexual Activity Venue Hepatitis B Test Status Barrier Method Used History of Specific Investigation (Hepatitis B Test) Sexual Relationship Duration Record of Specific Immunisation (Hepatitis B) Sexual Partner's Gender Reason Specific Immunisation not Performed (Hepatitis B) Sexual Partner's Age Hepatitis B Immunisation Intervention Received Sexual Partner's Country of Birth Sexual Partner's Place of Residence Gynaecology Sexually Transmitted Infection Screening Chlamydia Test Status History of Specific Investigation (Chlamydia Test) Chlamydia Test Offered Reason Chlamydia Test Not Offered Chlamydia Test Outcome Emergency Contraception Details Unprotected Sexual Intercourse (UPSI) Date(s) Unprotected Sexual Intercourse (UPSI) Hours Lapsed Unprotected Sexual Intercourse (UPSI) Cycle Day of Concern Emergency Contraception Emergency Contraception Lifetime Use (Number) Menstrual Problems (Self-Reported) Menstrual Blood Loss (Self-Reported) Menstruation Duration (Self-Reported) Menstruation Duration Range (Self-Reported) Menstruation Shortest Duration (Self-Reported) Menstruation Longest Duration (Self-Reported) Menstrual Cycle Bleeding Days (Total) Symptom Presence (Gynaecological-Related) {Sexual Health} Cervical Smear Test Status History of Specific Investigation (Cervical Smear Test) Contraception Details Contraception Problems (Self- Reported) Standards Due for Consultation There will be an opportunity to consult on the following work streams of data standards that may have some relevance to Sexual Health when they are circulated for consultation: Maternity Antenatal Due for July August 2007 consultation Generic Consent Due for July August 2007 consultation Eating Disorders Due for July August 2007 consultation Lab Investigations Phase 2 Work to begin later in 2007 Child Protection Work to begin later in 2007 Maternity Labour & Birth Work to begin later in 2007 Sexual Health Data Standards Phase 2 7

8 1. Examination Data Item Number Templates Examination Performed (Examination) 1.1 Reason Examination Not Performed (Examination) 1.2 Examination Outcome (Examination) 1.3 Reference Table of Examinations Specific to Sexual Health Specific Examination Findings Pubic Examination Abnormal Findings 1.4 Groin Skin Examination Abnormal Findings 1.5 Lymph Node Examination Abnormal Findings 1.6 Penile Examination Abnormal Findings 1.7 Scrotal Skin Examination Abnormal Findings 1.8 Scrotal Contents Examination Findings 1.9 Perianal Inspection Abnormal Findings 1.10 Digital Rectal Examination Findings 1.11 Prostate Examination by Digital Rectal Examination Abnormal 1.12 Findings Prostate Size (Estimated) by Digital Rectal Examination 1.13 Proctoscopy Abnormal Findings 1.14 Vulval Examination Abnormal Findings 1.15 Vaginal Speculum Examination Findings 1.16 Cervix Located 1.17 Intra-uterine Device/System Threads Visualised 1.18 Vaginal Digital Examination Abnormal Findings 1.19 Bimanual Abdominal/Vaginal Examination Abnormal Findings 1.20 Uterine Position 1.21 Uterine Size 1.22 Uterine Gestational Size (Estimated) 1.23 Uterine Mobilty 1.24 Uterus Sounded 1.25 Uterine Length 1.26 Colposcopic Examination Abnormal Findings 1.27a Colposcopic Examination Squamocolumnar Junction 1.27b Visualisation Colposcopic Opinion 1.27c Transformation Zone Classification 1.27d Cervix Biopsy Type 1.28 Colposcopic Procedure/Treatment Performed Type 1.29 Reason for Referral {Colposcopy} 1.30 Reference Table of Examinations Specific to Syphilis Tanner Stage Pubic Hair 1.31 Tanner Stage Male 1.32 Tanner Stage - Female Examination Performed (Examination) Definition: An indication of whether or not a specific examination was carried out. Sexual Health Data Standards Phase 2 8

9 00 No 01 Yes 99 Not Known 1.2 Reason Examination Not Performed (Examination) Common name: Examination not performed reason Definition: The reason as to why a specific examination was not carried out. Explanatory Notes 01 Not required 02 Examination not possible 03 Examination incomplete Includes where the examination was started but not completed. 95 Patient declined 98 Other 1.3 Examination Outcome (Examination) Definition: An indication of whether or not any abnormality was detected as a result of the specific examination. 00 No abnormality detected 01 Abnormality detected Reference Table of Examinations Specific to Sexual Health The following table is a list of examinations that are specific to Sexual Health. These examinations can be used with the template standards listed in 1.1, 1.2 and 1.3 to allow for the recording of general details. Where specific detail is required regarding the findings of an examination, the standard corresponding to the examination listed in the table can be used (e.g. where detailed findings for a Lymph Node Examination are required, the standard 1.6 Lymph Node Examination Findings can be used). All standards listed in the table have a corresponding detailed Findings standard, with the exception of Breast. Sexual Health Data Standards Phase 2 9

10 Examination Pubic Examination Groin Skin Examination Lymph Node Examination Penile Examination Scrotal Skin Examination Scrotal Contents Examination Perianal Inspection Digital Rectal Examination Prostate Examination by Digital Rectal Examination Proctoscopy Vulval Examination Vaginal Speculum Examination Vaginal Digital Examination Bimanual Abdominal/Vaginal Examination Colposcopic Examination Breast 1.4 Pubic Examination Abnormal Findings Definition: A record of the abnormal findings of the examination of the pubic skin and hair. 01 Bullae/Blister(s) 02 Colour change 03 Excoriation 04 Hair follicle change 05 Infestation 06 Inflammatory change 07 Lichenification 08 Raised lesion(s) 09 Ulceration 98 Other (specify) Attributes: Type of abnormality Reactive Suspicious Systems should allow for recording of multiple options. Users may wish to augment code 98 Other (specify) with a free text field for recording other findings. Sexual Health Data Standards Phase 2 10

11 1.5 Groin Skin Examination Abnormal Findings Definition: A record of the abnormal findings of the examination of the skin of the groin. 01 Bullae/Blister(s) 02 Colour change 03 Excoriation 04 Hair follicle change 05 Infestation 06 Inflammatory change 07 Lichenification 08 Raised lesion(s) 09 Ulceration 98 Other (specify) Attributes: Type of abnormality Reactive Suspicious Systems should allow for recording of multiple options. Users may wish to augment code 98 Other (specify) with a free text field for recording other findings. 1.6 Lymph Node Examination Abnormal Findings Definition: A record of the abnormal findings of the examination of the lymph nodes. 01 Discharging 02 Enlarged 03 Fixation 04 Fluctuant 05 Hardness 06 Irregular 07 Tender 98 Other (specify) Sexual Health Data Standards Phase 2 11

12 Attributes: Site Inguinal Axillary Cervical Laterality Left Right Type of abnormality Reactive Suspicious Systems should allow for recording of multiple options. Users may wish to augment code 98 Other (specify) with a free text field for recording other findings. 1.7 Penile Examination Findings Definition: A record of the findings of the examination of the penis. Field length: 3 Subcode Sub-value Explanatory Notes 01 Anatomical findings A Circumcision B Deformity E.g. Peyronie s disease C Epispadias D Foreign body E.g. piercing E Hyperspadius F Hypospadias G Paraphimosis H Phimosis J Trauma Z Other (specify) 02 Skin A Bullae/Blister(s) B Colour change C Excoriation D Hair follicle change E Inflammatory change F Lichenification G Raised lesion(s) E.g. warts or molluscum H Ulceration Z Other (specify) 03 Urethral A Discharge B Lesion(s) E.g. meatal wart 98 Other (specify) Z Other (specify) Sexual Health Data Standards Phase 2 12

13 Attributes: Type of abnormality Reactive Suspicious Anatomical site Glans Prepuce Shaft Systems should allow for recording of multiple options. Users may wish to augment code 98 Other (specify) and sub-code Z Other (specify) with a free text field for recording other findings. 1.8 Scrotal Skin Examination Abnormal Findings Definition: A record of the abnormal findings of the examination of the scrotal skin. 01 Bullae/Blister(s) 02 Colour change 03 Excoriation 04 Hair follicle change 05 Infestation 06 Inflammatory change 07 Lichenification 08 Raised lesion(s) 09 Ulceration 98 Other (specify) Attributes: Type of abnormality Reactive Suspicious Systems should allow for recording of multiple options. Users may wish to augment code 98 Other (specify) with a free text field for recording other findings. Sexual Health Data Standards Phase 2 13

14 1.9 Scrotal Contents Examination Findings Definition: A record of the findings of the examination of the contents of the scrotum. Explanatory Notes 01 Both testicles present 02 Lump/Mass 03 Testicle(s) impalpable 04 Swelling E.g. haematoma, hydrocoele, inguinal hernia. 06 Tenderness 98 Other (specify) Attributes: Laterality Left Right Bilateral Anatomical site Testicle Epididymis Venous plexus Type of abnormality Reactive Suspicious Examination includes visual inspection of the scrotum as well as palpation of the testes, epididymis and spermatic cord. Systems should allow for recording of multiple options. Users may wish to augment code 98 Other (specify) with a free text field for recording other findings Perianal Inspection Abnormal Findings Definition: A record of the abnormal findings of the perianal inspection for both male and female patients. Field length: 3 Sexual Health Data Standards Phase 2 14

15 Subcode Sub-value Explanatory Notes 01 Skin A Bullae/Blister(s) B Colour change C Excoriation D Hair follicle change E Infestation F Inflammatory change G Lesion(s) E.g. pilonidal sinus, perianal abscess H Lichenification J Trauma K Ulceration Z Other (specify) 02 Anal A Discharge B External haemorrhoids C Fissure(s) D Fistula in ano E Foreign body F Lesion(s) G Rectal prolapse H Skin tag(s) J Trauma K Ulceration L Lesion(s) 98 Other (specify) 99 Not known Attributes: Type of abnormality Reactive Suspicious Z Other (specify) Systems should allow for recording of multiple options. Users may wish to augment code 98 Other (specify) and sub-code Z Other (specify) with a free text field for recording other findings Digital Rectal Examination Findings Definition: A record of the findings of the digital rectal examination. Field length: 3 Subcode 01 Faecal presence A B 02 Fissure present Sub-value Faeces soft Faeces hard Sexual Health Data Standards Phase 2 15

16 03 Foreign body 04 Rectal mass 05 Anal mass 06 Scarring 07 Visible blood on glove 98 Other (specify) Attributes: Type of abnormality Reactive Suspicious A B Fresh Altered Systems should allow for recording of multiple options. Users may wish to augment code 98 Other (specify) with a free text field for recording other findings Prostate Examination by Digital Rectal Examination Abnormal Findings Common name: Digital Rectal Prostate Assessment - Findings Definition: A record of the abnormal findings of the prostate examination by digital rectal examination. 01 Abnormal texture 02 Enlarged 03 Hard nodule 04 Immobile 05 Tender 98 Other (specify) Attributes: Type of abnormality Reactive Suspicious Systems should allow for recording of multiple options. Users may wish to augment code 98 Other (specify) with a free text field for recording other findings. Sexual Health Data Standards Phase 2 16

17 1.13 Prostate Size (Estimated) by Digital Rectal Examination Common name: Prostate size Definition: A record of the size of the prostate as estimated by the clinician following a digital rectal examination, recorded to the nearest 10 grams. Format: Numeric N/A 1.14 Proctoscopy Abnormal Findings Definition: A record of the abnormal findings of a visual examination of the anal canal using a proctoscope. Explanatory notes 01 Bleeding/Visible blood 02 Foreign body 03 Inflammation Including visible discharge 04 Internal haemorrhoids 05 Polyps/Warts 06 Rectal mass 07 Scarring 08 Ulceration 98 Other (specify) Attributes: Type of abnormality Reactive Suspicious Systems should allow for recording of multiple options. Users may wish to augment code 98 Other (specify) with a free text field for recording other findings. Sexual Health Data Standards Phase 2 17

18 1.15 Vulval Examination Abnormal Findings Definition: A record of the abnormal findings of the examination of the vulva. Field length: 3 Subcode Sub-value Explanatory Notes 01 Anatomical findings A Congenital malformation B Foreign body E.g. piercing C Genital mutilation D Labial abnormality E Trauma E.g. scarring Z Other (specify) 02 Skin A Bullae/Blister(s) B Colour change C Cyst(s) D Excoriation E Hair follicle change F Infestation G Inflammatory change H Lichenification J Oestrogen deficiency signs K Raised lesion(s) L Ulceration Z Other (specify) 98 Other (specify) Attributes: Type of abnormality Reactive Suspicious Vulval examination includes visual inspection of the labia major/minora, clitoris, urinary meatus, vaginal orifice and perineal body. Systems should allow for recording of multiple options. Users may wish to augment code 98 Other (specify) and sub-code Z Other (specify) with a free text field for recording other findings Vaginal Speculum Examination Findings Definition: A record of the findings of the examination of the vagina and cervix (if present) using a speculum. Field length: 3 Sexual Health Data Standards Phase 2 18

19 Subcode Sub-value Explanatory Notes 01 Anatomical A Congenital malformation E.g. vaginal septum. findings C Genital tract fistulae D Hymen intact E Trauma F Uterine prolapse G Vault prolapse H Cystocele J Urethrocele K Rectocele L Enterocele Z Other (specify) E.g. vaginoplasty. 02 Vaginal A Discharge findings B Foreign body C Lesions E.g. vaginal warts. D Oestrogen deficiency signs Z Other (specify) 03 Cervical A Cervix absent E.g. Post hysterectomy findings B Contact bleeding C Ectropion D Lesion E.g. ulceration, suspicious appearance, polyp. E Scarring E.g. from previous LLETZ. Z Other (specify) 98 Other (specify) Attributes: Type of abnormality Reactive Suspicious Systems should allow for recording of multiple options. Users may wish to augment code 98 Other (specify) and sub-code Z Other (specify) with a free text field for recording other findings Cervix Visualised Definition: A record of whether or not the cervix was located during any type of vaginal examination. 00 No 01 Yes Sexual Health Data Standards Phase 2 19

20 1.18 Intra-uterine Device/System Threads Visualised Definition: A record of whether or not the threads of the woman s intra-uterine device/system were seen during a vaginal speculum examination. 00 No 01 Yes 1.19 Vaginal Digital Examination Abnormal Findings Definition: A record of the abnormal findings of the digital vaginal examination. Field length: 3 Subcode Sub-value 01 Anatomical A Congenital malformation E.g. vagina absent findings Z Other (specify) 02 Vaginal findings A Urethrocele/ Cystocele B Rectocele /Vaginal enterocele C Foreign body D Genital tract fistulae E Medical devices E.g. ring, pessary F Narrowing E.g. from scarring G Vaginismus H Uterine prolapse Z Other (specify) 98 Other (specify) Attributes: Type of abnormality Reactive Suspicious Sub-data item: Number of digits used in examination 01 One 02 Two Sexual Health Data Standards Phase 2 20

21 Systems should allow for recording of multiple options. Users may wish to augment code 98 Other (specify) and sub-code Z Other (specify) with a free text field for recording other findings Bimanual Abdominal/Vaginal Examination Abnormal Findings Definition: A record of the abnormal findings of the bimanual abdominal/vaginal examination. 01 Adnexal tenderness 02 Adnexal mass 03 Cervical motion tenderness 04 Lower abdominal tenderness 05 Uterine tenderness 98 Other (specify) Attributes: Laterality Left Right Type of abnormality Reactive Suspicious A bimanual abdominal/vaginal examination is where the health care professional inserts two fingers into the vagina and uses the other hand on the abdomen to be able to feel the internal pelvic organs, mainly the uterus and ovaries. Systems should allow for recording of multiple options. Users may wish to augment code 98 Other (specify) with a free text field for recording other findings Uterine Position Definition: A record of the position of the uterus as assessed by bimanual examination. Sexual Health Data Standards Phase 2 21

22 01 Anteverted 02 Retroverted 03 Midline/ Axial 98 Other (specify) Users may wish to augment code 98 Other (specify) with a free text field for recording other uterine positions Uterine Size Definition: A record of whether or not the size of the uterus is normal or enlarged as assessed by bimanual examination. Field length: 3 01 Normal 02 Enlarged 98 Other A B Due to pregnancy Other reason(s) 1.23 Uterine Gestational Size (Estimated) Common name: Uterine Enlargement Definition: A record of the estimated gestational size of the uterus, reported in weeks, as assessed by the clinician following a bimanual examination. Format: Numeric N/A Gestational size is used where a uterus is enlarged. It serves to indicate the size of the uterus by comparing it to a gestational size equivalent, however the cause of the enlarged uterus may not necessarily be due to gestation. Sexual Health Data Standards Phase 2 22

23 1.24 Uterine Mobility Definition: An indication of whether or not the uterus is mobile as assessed by bimanual examination. 00 No 01 Yes 1.25 Uterus Sounded Definition: An indication of whether or not the uterus was sounded as part of an examination. 00 No 01 Yes 02 Not possible 1.26 Utero-Cervical Length Common name: Uterine Length Definition: A record of the length of the uterine cavity in centimetres (cm). Format: Numeric N/A The length of the uterine cavity is recorded in centimetres. 1.27a Colposcopic Examination Abnormal Findings Definition: A record of the abnormal findings of the colposcopic examination of the cervix. Sexual Health Data Standards Phase 2 23

24 01 Acetowhite 02 Mosiac 03 Punctation 04 Atypical vessels 98 Other (specify) Attributes: Type of abnormality Reactive Suspicious Systems should allow for recording of multiple options. Users may wish to augment code 98 Other (specify) with a free text field for recording other findings. 1.27b Colposcopic Examination Squamocolumnar Junction Visualisation Definition: A record of whether or not the squamocolumnar junction (SCJ) was visualised at colposcopic examination of the cervix. 00 No 01 Yes 1.27c Colposcopic Opinion Definition: A record of the clinical opinion of the cervix or vagina at colposcopic examination. 01 Normal 02 HPV/ Inflammation /Benign 03 VaIN/ low-grade Sexual Health Data Standards Phase 2 24

25 04 VaIN/ high-grade 05 CIN/ low grade 06 CIN/ high grade 07 Invasion 98 Other (Specify) Attributes: Anatomical Site Cervix Vagina Related data-item: Cervix Visualised 1.27d Transformation Zone Classification Definition: A record of how much of the transformation zone was visualised during a colposcopic examination of the cervix, according to the international classification of transformation zone types. Explanatory Notes 01 Type I Fully visualised 02 Type II In to canal but visualised 03 Type III Not fully visualised 99 Not Known The international classification of transformation zone types is described in International Terminology of Colposcopy: An Updated Report From the International Federation for Cervical Pathology and Colposcopy. Walker et al. Obstetrics and Gynecology.2003; 101: Cervix Biopsy Type Definition: A record of the type of biopsy taken from the cervix during colposcopy. Explanatory Notes 01 Directed biopsy 02 Multiple directed biopsy 03 Excisional biopsy (LLETZ) 04 Wedge biopsy No biopsy taken. 98 Other (specify) 99 Not Known Sexual Health Data Standards Phase 2 25

26 Users may wish to augment code 98 Other (specify) with a free text field for recording other cervical biopsy types Colposcopic Procedure/Treatment Performed Type Common name: Type of Colposcopic Treatment/Procedure Performed Definition: A record of any procedure(s)/treatment(s) performed during colposcopy. Explanatory Notes 01 LLETZ Large loop excision of the transformation zone. 02 Cold coagulation 03 Laser ablation 04 Cone Laser or knife. 05 Cryotherapy 06 Trachelectomy 07 Cervical Amputation 08 Hysterectomy 98 Other (specify) Attributes: Time of Treatment/Procedure Previous Colposcopy Current Colposcopy Sub-data item: Date of Colposcopy Treatment/Procedure (see data standard for Date ). Systems should allow for recording of multiple options. Users may wish to augment code 98 Other (specify) with a free text field for recording other colposcopic treatments or procedures Reason for Referral {Colposcopy} Definition: The reason(s) for the patient/client requiring involvement with care professionals. These may include any problem, issue or event affecting the patient s/client s health and/ or well being. Sexual Health Data Standards Phase 2 26

27 01 Abnormal screening smear 02 Abnormal smear after colposcopy 03 Clinically suspicious cervix 04 Suspicious symptoms 98 Other (specify) Users may wish to augment code 98 Other (specify) with a free text field for recording other reasons for referral. Reference Table of Examinations Specific to Syphilis The examinations listed in the following table are specific examinations for any signs of syphilis and findings should only be reported in terms of an assessment for such signs (e.g. a neurological examination that is normal for signs of syphilis but reveals other neurological signs should still be recorded as No abnormality detected ). Data standards 1.1 Examination Performed (Examination) and 1.3 Examination Outcome (Examination) can be used with the examinations listed in the table to record whether each one was done or not and also whether there was any abnormality detected or not. Examination Abdominal Cardiovascular Fundoscopy Neurological Skin 1.31 Tanner Stage Pubic Hair Definition: A record of the Tanner stage for the person s pubic hair as assigned by the clinician. Explanatory Notes 01 Stage 1 No pubic hair. 02 Stage 2 Small amount of long hair at base of male scrotum or female labia majora. 03 Stage 3 Moderate amount of curly and coarser hair extending outwards. 04 Stage 4 Resembles adult hair but does not extend to inner surface of thigh. 05 Stage 5 Adult type and quantity extending to the medial thigh surface. 98 Other This is applicable for both males and females. Sexual Health Data Standards Phase 2 27

28 1.32 Tanner Stage Male Genital Definition: A record of the Tanner stage for the person s male genital development as assigned by the clinician. Explanatory Notes 01 Stage 1 Pre-pubertal. 02 Stage 2 Scrotum starting to enlarge with reddened and coarser skin. 03 Stage 3 Penis increased in length with continued growth of testes and scrotum. 04 Stage 4 Penis has increased in both length and breadth; continued growth of testes and scrotum that becomes pigmented. 05 Stage 5 Testes, scrotum and penis adult size. 98 Other This is applicable for males only Tanner Stage Female Breast Definition: A record of the Tanner stage for the person s female breast development as assigned by the clinician. Explanatory Notes 01 Stage 1 Pre-pubertal. No breast tissue. 02 Stage 2 Areolar enlargement with breast bud. 03 Stage 3 Enlargement of breast and areola as single mound. 04 Stage 4 Projection of areola above breast as double mound. 05 Stage 5 Adult; papilla projects out of areola that is part of breast contour. 98 Other 99 Not Known This is applicable for females only. Sexual Health Data Standards Phase 2 28

29 2. Sexual Partner Notification Data Item Number Sexual Partner Notification - Infection Type 2.1 Sexual Partner Notification Period of Infection Concern 2.2 Sexual Partner Notification Eligible Contacts (Number) 2.3 Sexual Partner Notification Traceable Contacts (Number) 2.4 Sexual Partner Notification Agreement 2.5 Sexual Partner Notification Infection Disclosure 2.6 Agreement Sexual Partner Notification Reason Declined 2.7 Sexual Partner Notification Mode 2.8 Sexual Partner Notification Contact Status 2.9 Sexual Partner Notification Outcome 2.10 Sexual Partner Test Status 2.11 Sexual Partner Infection Status 2.12 Sexual Partner Infection Treatment Status Sexual Partner Notification - Infection Type Definition: A record of the index person s type of infection for which sexual partner notification is being considered or undertaken. 01 Chlamydia 02 NSGI (Non Specific Genital Infection (Non Chlamydia)) 03 Syphilis 04 Gonorrhoea 05 HIV 06 Hepatitis B 07 Hepatitis C 08 Trichomonas 98 Other (specify) Sub-data item: Date Seen for Sexual Partner Notification (see data standard for Date ). Date Infection Diagnosed (see data standard for Date ). Sexual partner includes anyone the index person has had any type of genital or anal contact with (includes vaginal, oral and anal sex). Systems should allow for the recording of more than one sexual partner notification infection type to account for multiple infections. Users may wish to augment code 98 Other (specify) with a free text field for recording other infection types. Sexual Health Data Standards Phase 2 29

30 2.2 Sexual Partner Notification Period of Infection Concern Definition: A record of how far back into the index person s sexual history any sexual partners are deemed to be of interest for a specified episode of partner notification. Format: Numeric N/A Sub-data item: Measure of Time 01 Day(s) 02 Week(s) 03 Month(s) 04 Year(s) The type of infection the index person is diagnosed with and the presence of any symptoms will determine how far back into the index person s sexual history any sexual partners are deemed to be at risk and/or will be traced for the purposes of partner notification. Guidelines are available at: Systems should allow for the recording of multiple periods of concern to account for multiple infections, with only one value recorded for each specific infection type. 2.3 Sexual Partner Notification Eligible Contacts (Number) Definition: An indication of the total number of the index person s sexual partners that are eligible for partner notification in a specified episode of partner notification. Format: Numeric Field length: 4 N/A Related data item: Sexual Partner Notification Period of Infection Concern Sexual Partner Notification Traceable Contacts (Number) The number of sexual partners that are eligible to be traced through partner notification will depend on the type of infection that the index person has been diagnosed with. The number of eligible partners can sometimes be an estimated value. Sexual Health Data Standards Phase 2 30

31 2.4 Sexual Partner Notification Traceable Contacts (Number) Definition: An indication of the number of the index person s sexual partners that could potentially be traced and contacted for partner notification in a specified episode of partner notification. Format: Numeric Field length: 4 N/A Related data item: Sexual Partner Notification Eligible Contacts (Number) Whether a sexual partner can be contacted or not depends on the level of information that the index person is able to provide regarding them. Where the information can result in an attempt to contact a sexual partner this would count as a traceable contact. 2.5 Sexual Partner Notification Agreement Common name: Notification of Sexual Partner Definition: An indication of whether or not the index person has agreed to a specified sexual partner being notified of possible exposure to an infection. 00 No 01 Yes Sub-data item: Date Seen for Partner Notification (see data standard for Date ). Sexual partner includes anyone the index person has had any type of genital or anal contact with (includes vaginal, oral and anal sex). Sexual partner notification is applicable only when the index person has tested positive for one (or more) of the following infections: Chlamydia, NSGI, syphilis, gonorrhoea, HIV, Hepatitis B, Hepatitis C and trichomonas. It is aimed towards informing and screening partners that may have been exposed to any infection by sexual contact with the index person. Either the index person or the sexual health service can notify the index person s sexual partner(s). Systems should allow for the recording of multiple sexual partner notification indicators to account for multiple partners, with only one value recorded for each specific sexual partner. Sexual Health Data Standards Phase 2 31

32 2.6 Sexual Partner Notification Infection Disclosure Agreement Definition: A record of whether or not the index person has agreed to a specified sexual partner being informed of the type of infection concerned with a specified episode of partner notification. 00 No 01 Yes Systems should allow for the recording of multiple infection disclosures to account for multiple partners, with only one value recorded for each specific partner within a specific episode of partner notification. 2.7 Sexual Partner Notification Reason Declined Definition: The reason as to why the index person did not agree to a specified sexual partner being notified of possible exposure to an infection. Explanatory Notes 00 No reason 01 Sexual partner untraceable Index person does not know sufficient contact details for sexual partner. 02 Sexual partner already attended E.g. sexual partner is already aware of possible exposure to an infection. 03 Unwilling to contact sexual partner Index person declines patient and provider referral. 98 Other Sexual partner includes anyone the index person has had any type of genital or anal contact with (includes vaginal, oral and anal sex). Sexual partner notification is applicable only when the index person has tested positive for one (or more) of the following infections: Chlamydia, NSGI, syphilis, gonorrhoea, HIV, Hepatitis B, Hepatitis C and trichomonas. It is aimed towards informing and screening partners that may have been exposed to any infection by sexual contact with the index person. Either the index person or the sexual health service can notify the index person s sexual partner(s). Sexual Health Data Standards Phase 2 32

33 Systems should allow for the recording of multiple sexual partner notification decline reasons to account for multiple partners, with only one value recorded for each specific sexual partner where applicable. 2.8 Sexual Partner Notification Mode Definition: A description of the way in which the index person would like to have a specified sexual partner notified of possible exposure to an infection. Explanatory Notes 01 Patient referral Index person to notify sexual partner. 02 Conditional referral An initial patient referral is followed up by provider referral after an agreed period of time, if the contact has not attended. 03 Provider referral Health care professional to notify sexual partner. Patient did not agree to sexual partner notification. Sexual partner includes anyone the index person has had any type of genital or anal contact with (includes vaginal, oral and anal sex). Systems should allow for the recording of multiple sexual partner notification modes to account for multiple partners, with only one value recorded for each specific sexual partner. 2.9 Sexual Partner Notification Contact Status Definition: A description of the result of an attempt to contact the index person s specified sexual partner through partner notification. Explanatory notes 01 Sexual partner informed 02 Unable to establish contact with sexual partner 03 Unable to establish contact with index person E.g. sexual health service unable to contact the index person again. Sexual partner includes anyone the index person has had any type of genital or anal contact with (includes vaginal, oral and anal sex). Sexual Health Data Standards Phase 2 33

34 Systems should allow for the recording of multiple sexual partner notification contact status to account for multiple partners, with only one value recorded for each specific sexual partner where applicable Sexual Partner Notification Outcome Definition: A description of the outcome of notifying the index person s specified sexual partner through partner notification. Explanatory notes 01 Sexual partner declined to attend for testing/treatment 02 Sexual partner has already attended for testing/treatment 03 Unable to establish outcome. E.g. not able to contact sexual partner. Sub-data item: Date partner notification episode closed (see data standard for Date ). Source of information 01 Healthcare professional 02 Index person Verification 00 Unverified 01 Verified Sexual partner includes anyone the index person has had any type of genital or anal contact with (includes vaginal, oral and anal sex). An episode of partner notification is closed once an outcome regarding the sexual partner has been established. Systems should allow for the recording of multiple sexual partner notification outcomes to account for multiple partners, with only one value recorded for each specific sexual partner where applicable Sexual Partner Test Status Definition: A record of whether or not the specified sexual partner has been tested for the infection type that they were notified about through partner notification. Sexual Health Data Standards Phase 2 34

35 00 No 01 Yes Sub-data item: Source of information 01 Healthcare professional 02 Index person Verification 00 Unverified 01 Verified Sexual partner includes anyone the index person has had any type of genital or anal contact with (includes vaginal, oral and anal sex). Systems should allow for the recording of multiple sexual partner test status to account for multiple partners, with only one value recorded for each specific sexual partner where applicable Sexual Partner Infection Status Definition: A record of the result of the specified sexual partner s test for the infection type that they have been notified for through partner notification. 01 No infection 02 Same infection as index person 03 Different infection from index person Sub-data item: Source of information 01 Healthcare professional 02 Index person Sexual Health Data Standards Phase 2 35

36 Verification 00 Unverified 01 Verified Sexual partner includes anyone the index person has had any type of genital or anal contact with (includes vaginal, oral and anal sex). Systems should allow for the recording of multiple sexual partner infection status to account for multiple partners, with only one value recorded for each specific sexual partner where applicable Sexual Partner Infection Treatment Status Definition: An indication of whether or not the specified sexual partner has been treated for the infection type that they were notified about through partner notification. 00 No 01 Yes Sub-data item: Source of information 01 Healthcare professional 02 Index person Verification 00 Unverified 01 Verified Sexual partner includes anyone the index person has had any type of genital or anal contact with (includes vaginal, oral and anal sex). This standard is only applicable to certain infections for which partner notification would be initiated, including Chlamydia, NSGI, syphilis, gonorrhoea and trichomonas. Systems should allow for the recording of multiple sexual partner infection treatment status to account for multiple partners, with only one value recorded for each specific sexual partner where applicable. Sexual Health Data Standards Phase 2 36