SUMMARY: MED-A CENTRES ONLY

The large majority of BSBMTCT member centres/DMS in the UK are submitting Med-A only data. The 35 responding DMS that submit Med-A only data were from 31 different centres. Although 15 centres did not respond to either survey a manual check of ProMISe revealed that 11 of these centres are Med-A only. The BSBMTCT currently has 52 member centres, which means that 80.8% (42) are Med-A only centres.

The majority of responding DMS for Med-A only centres (85.7%, n=30) have no plans to used Med-B forms in future. However, 5 responding DMS (14.3%) were considering switching to Med-B forms. One of which (2.9%) would do this for all HSCT data entry, while 4 (11.4%) would only do this for certain situations (collection of study data) or certain forms (e.g. D0 only).

More than half of responding DMS (54.3%, n=19) said their centre never previously completed Med-B forms and have been Med-A only centres from the very beginning. Seven responding DMS (20%) said their centres did previously complete Med-B forms either frequently or occasionally. The remainder of responders (25.7%, n=9) didn’t know if their centres used to complete Med-B forms. Of the centres that previously completed Med-B forms only 3 DMS from them (8.6%) still access the Med-B data (205, 704, 763).

Four (11.4%) responding DMS from centres 254, 228, 708 and 608 want to export historical Med-B HSCT data before ProMISe is frozen. It’s interesting that the centres/DMS that want to export the historical Med-B data are not the same as those that still access the data. There were however 9 (25.7%) responding DMS who didn’t know if they wanted historical Med-B data exported.

The reasons given for completing Med-B HSCT forms previously were:

• For studies (mentioned by 5 responders)
• Unknown/can’t remember (mentioned by 6 responders)
• Additional information (mentioned by 1 responder)
• Recommended to collect Med-B data (mentioned by 1 responder)
• Recorded by clinicians (mentioned by 1 responder)
• For select patients (mentioned by 1 responder)
• Centres were asked to complete spreadsheets containing Med-B items, possibly study related (mentioned by 1 responder)

The reasons given for centres switching to Med-A only data collection were:

• Time consuming (mentioned by 3 responders)
• Understaffed/limited data management capacity (mentioned by 2 responders)
• The forms were too difficult to complete (mentioned by 1 responder)
• Backlogs (mentioned by 1 responder)
• Data entry difficulties that partly completed Med-B forms present (mentioned by 1 responder)

For centres that previously completed Med-B forms (n=14), 10 (71.4%) responding DMS said they were stopped at least 5 years ago. Of these DMS 5 (35.7%) said Med-B forms were stopped over 10 years ago. Only 1 (7.1%) responding DMS stopped it relatively recently, 1-4 years ago. Three (21.4%) responding DMS didn’t know when they stopped doing the Med-B forms.

SUMMARY: MED-B ONLY OR COMBINATION MED-B AND MED-A CENTRES

A small number of BSBMTCT member centres/DMS in the UK are submitting Med-B only or combination Med-B and Med-A data. The 6 responding DMS that submit Med-B data were from 6 different centres. A manual check of ProMISe revealed that 4 non-responding centres submitted both Med-A and Med-B data. The BSBMTCT currently has 52 member centres, which means that 19.2% (10) are Med-B only or combination Med-B and Med-A centres.

The reasons given by responding DMS for using Med-B forms were:

• For studies (mentioned by 5 responders)
• Additional information (mentioned by 3 responders)
• Site/team records (mentioned by 2 responders)
• Centre outcomes  (mentioned by 1 responder)
• Pre-empt data requests & easier to get Med-B data in during initial registration  (mentioned by 1 responder)
• Reports (mentioned by 1 responder)

The responding DMS (n=6) complete Med-B forms mainly for D0 and D100 registrations but they are also used for annual follow-ups (of the responders 6 (100%) did Day 0 or D100 forms, and 4 (66.7%) did annual follow-ups).

Half (50%, n=3) of responding DMS said they entered all Med-B items as they were all required, while the other 50% (n=3) only entered some Med-B items (in addition to the core Med-A data) as not all of it was required.

The items on Med-B forms that responding DMS said were required are:

• Infectious complications
• Cell counts
• Chimerism
• Non-infectious complications

The number of Med-B forms (irrespective of type) completed each year varies quite a bit among responding DMS (range 12 – 170). DMS at centres 778 and 566 complete the most amount of Med-B forms each year (range 140-170), whereas the DMS at centre 933 completes the least amount of Med-B forms each year (approximately 12). Half (50%, n=3) of responding DMS complete Med-B forms daily to several times each week. The remaining 50% (n=3) of responders complete forms several times in a month to several times in a year.

Three responding DMS from centres felt that if they couldn’t complete Med-B forms for a period-of-time it would have an impact on them:

• Local data analysis would be more cumbersome
• Create a backlog for data entry, which would be consuming to catch up with
• Data would be missing for centre outcomes and studies

The remaining 3 responding DMS from centres 276, 566 and 603 didn’t feel it would have a big impact on them.

Four responding DMS (66.7%) from centres 276, 603, 717 and 933 would want to collect Med-B data on spreadsheets or other means if they couldn’t enter it into a database (ProMISe or the new EBMT database) for a period-of-time. The remaining 2 (33.3%) responders didn’t know if they wanted to do this.

Only 1 (16.7%) responding DMS from centre 603 was willing to permanently switch to Med-A data entry, whereas 2 (33.3%) responders from centres 566 & 778  said they wouldn’t switch as they needed Med-B data. The remaining 3 (50%) responding DMS from centres  717, 276 and 933 would be willing to switch for a temporary amount of time (e.g. until Med-B data became available in the new database) or for certain forms (e.g. D0 only).

Only 1 (16.7%) responding DMS from centre 717 wanted to export Med-B data prior to ProMISe being frozen. Two (33.3%) responding DMS  from centres 933 & 603 didn’t require this, and the remaining DMS didn’t know.