NIHR BioResource Questionnaire - cancer types list
The NIHR BioResource questionnaire includes a question on cancer history, and also family history of cancer, which asks participants to specify the 'type' of cancer. This is submitted as a free text entry field, but needs to be coded to a list.
Our intention is to build up a picking list for this, compiled from the answers given by participants, and add to it as the recruitment process expands.
Ideally the data should be mapped to SNOMED CT or ICD codes, but the level of specificity in participants answers is likely to be low. So finding codes for an equivalent level of specificity may be difficult.
We are taking reference data from the national 2 week wait categories, but with some local amendments to reflect patient language.
01 - Breast cancer 02 - Children's cancer 03 - Lung cancer 04 - Lymphoma and other haematological malignancies excluding leukaemia 05 - Leukaemia 06 - Stomach and other upper gastrointestinal cancers except: 06a - Liver cancer 06b - Pancreatic cancer 07 - Bowel and lower gastrointestinal cancers 08 - Skin cancers 09 - Gynaecological cancers 10 - Brain or central nervous system tumours 11a - Prostate cancer 11b - Bladder cancer 11c - Kidney cancer 11 - Other urological cancers 12 - Testicular cancer 13 - Head and neck cancers 14 - Sarcomas 15 - Other cancer
Add an additional free text question for 'other' diagnosis.
01, Breast cancer | 02, Children's cancer | 03, Lung cancer | 04, Lymphoma and other haematological malignancies excluding leukaemia | 05, Leukaemia | 06, Stomach and other upper GI cancers except liver or pancreatic | 06a, Liver cancer | 06b, Pancreatic cancer | 07, Bowel and lower gastrointestinal cancers | 08, Skin cancers | 09, Gynaecological cancers | 10, Brain or central nervous system tumours | 11a, Prostate cancer | 11b, Bladder cancer | 11c, Kidney cancer | 11, Other urological cancers | 12, Testicular cancer | 13, Head and neck cancers | 14, Sarcomas | 15, Other cancer
Each diagnosis should have its own date of diagnosis, rather than one box.
For Family History of Cancer question, the same set of checkboxes is available, but the 'at age' prompt only really anticipates a single answer, so we are leaving that to be a single entry. However, the questionnaire structure allows for a separate age to be entered for each diagnosis, if given.
