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Identification of mental health and quality of life outcomes in primary care databases in the UK: a systematic review
  1. Helena Carreira1,
  2. Rachael Williams2,
  3. Helen Strongman1,
  4. Krishnan Bhaskaran1
  1. 1Department of Non-communicable Disease Epidemiology, London School of Hygiene and Tropical Medicine Faculty of Epidemiology and Population Health, London, UK
  2. 2Clinical Practice Research Datalink, Medicines and Healthcare Products Regulatory Agency, London, UK
  1. Correspondence to Helena Carreira; helena.carreira{at}


Objectives To summarise the definitions and combinations of codes used to identify outcomes of anxiety, depression, fatigue, cognitive dysfunction (including mild cognitive dysfunction and dementia), sexual dysfunction, pain, sleep disorders, and fatal and non-fatal self-harm in studies using electronic health records from primary care databases in the UK.

Design Systematic review.

Data sources Medline, Embase and lists of publications of the main primary care databases in the UK.

Eligibility criteria Included data from a UK primary care database and studied outcome(s) of interest.

Data extraction and synthesis We abstracted information on the outcomes definition and codelists. When necessary, authors were contacted to request codelists.

Results 120 studies were eligible. Codelists were available for 17/42 studies of depression; 21/41 studies of fatal and non-fatal self-harm; 17/27 studies of dementia/cognitive dysfunction; 5/12 studies of anxiety; 4/8 studies of pain; 3/6 studies of fatigue and sexual dysfunction; 1/2 studies of sleep disorders. Depression was most often defined using codes for diagnoses (37/42 studies) and/or antidepressants prescriptions (21/42 studies); six studies reported including symptoms in their definition. Anxiety was defined with codes for diagnoses (12/12 studies); four studies also reported including symptoms. Fatal self-harm was ascertained in primary care data linked to the Office for National Statistics mortality database in nine studies. Most studies of cognitive dysfunction included Alzheimer’s disease, and vascular and frontotemporal dementia. Fatigue definitions varied little, including chronic fatigue syndrome, neurasthenia and postviral fatigue syndrome. All studies of sexual dysfunction focused on male conditions, principally erectile dysfunction. Sleep disorders included insomnia and hypersomnia. There was substantial variability in the codelists; validation was carried out i21/120 studies.

Conclusions There is a need for standardised definitions and validated list of codes to assess mental health and quality of life outcomes in primary care databases in the UK.

  • primary care
  • mental health
  • electronic health records databases

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  • Contributors HC, RW and KB designed the study. HC and HS screened the list of references and abstracted information from the original studies. HC wrote the first draft of the manuscript. All authors revised the paper for important intellectual content.

  • Funding This work was supported by the Medical Research Council (MRC) and the Clinical Practice Research Datalink (CPRD) at the Medicines and Healthcare products Regulatory Agency (MHRA) (grant number MR/M016234/1 to H.C.); and the Wellcome Trust and the Royal Society (grant number 107731/Z/15/Z to K.B.).

  • Competing interests KB reports grants from Wellcome Trust, the Royal Society, Medical Research Council and British Heart Foundation, outside the submitted work. RW reports that CPRD has financial relationships with its clients, including the London School of Hygiene and Tropical Medicine, in relation to providing access to research data and services outside the submitted work.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement All data relevant to the study are included in the article or uploaded as online supplementary information.

  • Patient consent for publication Not required.