Leder Data Tool
Data Documentation
ODS change summary ICB 2022-2023 Year 1 renaming (.xlsx digital.nhs.uk file)
Quick start guide (.pdf) | html
Acceptable use policy (html)
Data Mapping
| Section in LeDeR data tool | Variable/filter in LeDeR data tool | Question in LeDeR review form | Form | Mandatory? | Notes |
|---|---|---|---|---|---|
| Filters | Region | Derived from GP address details | Notification | YES | |
| ICB | Derived from GP address details | Notification | YES | ||
| Sub-ICB | Derived from GP address details | Notification | YES | ||
| Cause of death 1a | Imported from cause of death data taken directly from death certificate | N/A | N/A | ||
| Sex at birth | Sex at birth | Initial | NO | ||
| Age at death | Age at death | Initial | YES | ||
| Avoidable deaths | Derived from cause of death data taken directly from death certificate compared with OECD definitions of preventable and treatable causes of death | N/A | N/A | ||
| Year of death | Date of death | Initial | NO | ||
| Ethnic group level 1 | What was their ethnic group | Initial | YES | ||
| Learning disability | Did the person have a learning disability? Did the person have a clinical diagnosis of autism? |
Initial | YES | Questions added in January 2022 | |
| Learning disability level | What level of Learning Disability did the person who died have? | Initial | YES | This question was moved from the focused review to the initial review in January 2023 | |
| Mental health | Did the person have psychosis, including schizophrenia, schizoaffective disorder, schizophreniform disorder and delusional disorder? Did the person have Bipolar Disorder? Did the person have Depression? Did the person have anxiety disorder, including obsessive compulsive disorder, anxiety disorder, social anxiety disorder, phobias and post-traumatic stress disorder? Did the person have an eating disorder including at any time in their life? |
Focused | YES | ||
| Place of death | Where did they die? | Initial | NO | ||
| Health check | Did the person have a Learning Disability Annual Health Check in the last 12 months before death? | Initial | YES | This question was moved from the focused review to the initial review in January 2023 | |
| IMD Quintile | Derived from the person's postcode - the index of deprivation comes from identifying their lower super output area based on postcode. The 2019 | Notification | YES | IMD deciles are combined so that deciles 1 & 2 become quintile 1, deciles 3 & 4 become quintile 2 etc. Decile and quintile 1 represent the most deprived areas. | |
| Number of deaths | Date of death | Date of death | Initial | NO | |
| Demographics | Age at death | Age at death | Initial | YES | |
| Ethnicity | What was their ethnic group Select one group |
Initial | YES | The ability to select a level 2 ethnicity inappropriate for level 1 (e.g. white at level 1 followed by Any other black, African or Caribbean at level 2) was removed in January 2023. | |
| Geography | Derived from GP address details | Notification | YES | All reviews were re-assigned to their new geographies when CCGs became ICBs in July 2022. | |
| IMD Quintile | Derived from the person's postcode - the index of deprivation comes from identifying their lower super output area based on postcode. The 2019 | Notification | YES | IMD deciles are combined so that deciles 1 & 2 become quintile 1, deciles 3 & 4 become quintile 2 etc. Decile and quintile 1 represent the most deprived areas. | |
| Learning disability | Did the person have a learning disability? Did the person have a clinical diagnosis of autism? |
Initial | YES | Questions added to the initial review form in January 2022 when notifications for autism deaths were introduced. | |
| Learning disability level | What level of Learning Disability did the person who died have? | Initial | YES | This question was moved from the focused review to the initial review in January 2023 | |
| Learning disability register | Was the person on their GP's Learning Disability register? | Focused | YES | ||
| Living arrangements | What were the person’s living arrangements? | Focused | YES | ||
| Health | Cause of death | Imported from cause of death data taken directly from death certificate | N/A | N/A | |
| Frailty | Was the person assessed as living with a frailty | Focused | NO | ||
| Genetic syndrome or birth related condition | Did the person have a genetic condition, syndrome or birth related condition linked to their learning disability? | Initial | YES | This question was moved from the focused review to the initial review in January 2023 | |
| Long term conditions | Did the person have any of the following long-term conditions? | Initial | YES | This question was added in January 2023. | |
| Mental health | Did the person have psychosis, including schizophrenia, schizoaffective disorder, schizophreniform disorder and delusional disorder? Did the person have Bipolar Disorder? Did the person have Depression? Did the person have anxiety disorder, including obsessive compulsive disorder, anxiety disorder, social anxiety disorder, phobias and post-traumatic stress disorder? Did the person have an eating disorder including at any time in their life? |
Focused | YES | ||
| Physical health conditions | Did the person have epilepsy? Did the person have aspiration pneumonia? Did the person have problems swallowing, a condition know as Dysphagia Did the person have a respiratory condition such as Asthma, COPD, Lung cancer, Pneumonia, Bronchiectasis etc? Did the person have a cardiovascular condition such as Heart failure, Angina, Stroke etc? Did the person have diabetes? Did the person have any other endocrine condition such as Hypo (and hyper) thyroidism? Did the person have a renal condition such as Chronic Kidney Disease? Did the person have dementia? Did the person have Parkinson's disease? Did the person have a record of falls? Was the person underweight, obese, or had any significant changes in their weight in the 12 months before death? Did the person have a gastric reflux condition such as GORD? Did the person have Cancer? Did the person have a sleep disorder and or atypical sleep patterns? Did the person have Musculoskeletal issues such as Arthritis or Osteoporosis? Did the person have irregular bowel habits such as Constipation, Diarrhoea or IBS? Did the person have any skin conditions such as Eczema, etc? Did the person have dental problems? Did the person have continence issues? Did the person have any sensory impairment such as blindness, visual impairment, cataracts, deafness, glaucoma etc? Did the person have impaired mobility? |
Focused | YES | ||
| Lifestyle | Alcohol use | Did the person drink alcohol | Focused | NO | |
| Drug & alcohol services | Was the person accessing drug or alcohol services at the time of their death? | Focused | NO | ||
| Drug use | Did the person use cannabis Did the person use any other recreational drugs |
Focused | NO | ||
| Exercise | Did the person exercise regularly | Focused | YES | ||
| Smoking | Did the person smoke | Focused | YES | ||
| Processes | Criminal justice contract | Did the person come into contact with the criminal justice system as an offender in the last 5 years? | Initial | NO | This question was added to the initial review in January 2022 |
| DNACPR | Did the person have a DNACPR recommendation in place at the time of their death? | Initial | YES | ||
| End of life pathway | Was the person on an end of life pathway? | ||||
| Health check | Did the person have a Learning Disability Annual Health Check in the last 12 months before death? | Initial | YES | This question was moved from the focused review to the initial review in January 2023 | |
| Mental capacity assessment | Is there evidence that a mental capacity assessment was required at any time? | Initial | YES | ||
| Mental health restrictions | Was the person subject to mental health restrictions at the time of their death or in the previous 5 years? | Initial | YES | This question was added to the initial review in January 2022 | |
| Assessment | Avoidable deaths | Calculated by comparing the 1st ICD code given as the primary cause of death for a person from the MCCD data to a defined set of ICD codes developed by the Organisation for Economic Cooperation and Development (OECD): Avoidable-mortality-2019-Joint-OECD-Eurostat-List-preventable-treatable-causes-of-death.pdf | N/A | N/A | |
| Concerns | Please identify any issues, concerns or potential problems with care reflected in the findings. | Focused | NO | ||
| Grading of care | Grade the quality of care the person received | Focused | YES | ||
| Positive practice themes | Please identify any positive practice that could benefit other people if the same was available to them (theme). | Focused | NO |