NCEPOD - Cancer in Children, Teens and Young Adults study FAQs

Cancer in Children, Teens and Young Adults

This study has been commissioned by Healthcare Quality Improvement Partnership
as part of the Clinical Outcome Review Programme into Child Health, under a contract awarded in 2015
For information on how we use data click here

Data collection for study: Open
Publication date: Autumn 2018

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Our hospital does not prescribe chemotherapy, do we have to take part?
- If your hospital does not prescribe SACT then please let us know that this is the case. You do not need to complete the Treatment Data spreadsheet, but if your hospital does have an ICU then you can still complete the ICU/ death data spreadsheet (please see Tab 3 Data Collation – ICU/ death). Your hospital may also still be eligible to complete an organisational questionnaire.
The study time period for the SACT sheet and the ICU sheet are different, is this mistake?
- No this has been done purposefully, the SACT study time period is 01/03/2014 – 31/06/2016 and the ICU study time period is 01/06/2014 – 31/06/2016.
Our hospital does not admit paediatric patients do we have to take part?
- This study is looking at children, teenagers and young adults – all patients aged 25 and under, if you have any adult patients who fit the criteria, a spreadsheet can be completed and sent to us.
If a patient turned 26 years old during the study period do we only include their admissions for when they were 25 and younger or for all their admissions during the study period?
- Please only include their admissions for when they were 25 or younger.
Do patients have to be listed on both the SACT and ICU spreadsheet? What if a patient only went to ICU and was not prescribed with SACT during the study time period?
- Please treat each spreadsheet separately; we do not expect each patient to be listed on both spreadsheets (although this may be the case for some patients). Similarly, please list all patients receiving SACT regardless of whether they went to ICU/died or not (they may not have done so at your hospital, but did elsewhere).
Does this cancer ICD10 code (C00-D09; D37-D48) need to be the primary diagnosis for admission?
- No, the cancer ICD10 code can be in any position.
When is the study period?
- For the chemotherapy worksheet the time period is 01/03/2014 – 31/05/2016
  For the ICU/death worksheet the time period is 01/06/2014 – 31/05/2016
If a patient has received multiple cycles during the time period, should we list all of them or just the most recent?
- Please list all the cycles within the study time period with each cycle listed on a separate line.
Do we have to complete all the data requested on the spreadsheet?
- A full dataset is most useful however if it is going to take a while to get all the information we are able to process spreadsheets with a just the key fields completed. For the SACT worksheet this includes the Hospital name, Hospital number, NHS number, Date of birth, Date of prescription of the most recent cycle of SACT. For the ICU/death worksheet this includes the Hospital name, Hospital number, NHS number, Date of Birth, Whether or not the patient died (if no, and they died outside of hospital please provide this date), Whether or not the patient was admitted to ICU (if yes please provide the ICU admission/discharge dates).
Is the Cancer in Children, Teens and Young Adults study part of your Child Health Review Programme?
- No, although this study is looking at the care of children and young adults this study is part of NCEPOD’s Medical and Surgical Review Programme.
  Child Health studies: Young People’s Mental Health and Chronic Neurodisability.
How are you selecting patients?
- We will be looking at all patients who died or went to ICU within 60 days of receiving chemotherapy; this is why it is important we have patient data back from all hospitals before selecting patients as patients may move between hospitals. We will be matching patients up on the NHS number or if no NHS number then their hospital number.
Will there be questionnaires for this study? How many and who will complete them?
- Yes, there will be 2 clinician questionnaires for each case. One to be completed by the consultant oncologist who was responsible for starting the protocol of SACT and one to be completed by the named clinician at discharge/ death (final/ key admission to hospital) . There will also be an organisational questionnaire to be completed for each hospital where SACT is administered/ an ICU is present.
Will there be a limit to how many cases are selected per hospital?
- As the number of matched patients (who fit the criteria for the study) is low, we are unable to limit the number of cases per hospital; however we will try to limit the number of questionnaires sent per clinician to 4. Where a clinician has received 4 questionnaires or a particular hospital has received over 10 questionnaires in total we are happy for the consultant’s trainees to complete the questionnaire provided the named consultant is able to sign this off.
My hospital is a large specialist centre, we have a huge number of cases selected for this study. This is a huge amount of work for us to return all requested questionnaires and case note extracts within the time frame given.
- We realise that as a lot of the care of these patients is concentrated within large specialist centres (of which there are only ~20 nationally), there will be a similar concentration of cases at these centres. As stated above, because of the overall low number of applicable cases it is difficult for us to limit the number of cases per hospital, however, if you are struggling, please get in touch with us at the NCEPOD office, where we will go through various options of how we can help you to get a good return.

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