Comparing self-report medication data from a longitudinal study on intellectual disability and national dispensing records.

Only 292 of the 719 participants who provided medication data had valid dispensing records, because many did not provide consent or a valid medical card number. Participants without dispensing linkage reported significantly more behaviours of concern than linked participants, so the linked sample may not represent all IDS-TILDA participants. Dispensing records did not capture prescriptions under the Long-Term Illness scheme or from some services that do not use HSE-PCRS. Psychotropic medicines may be prescribed as required, so they could be reported in the survey but not dispensed in the two-month window. Self-reported medication lists were often copied from a Kardex, and discontinued medicines could be included if the handwritten note was unclear. Epilepsy, mental health condition and dementia diagnoses were based on participant or proxy report of a doctor's diagnosis, not checked against medical records.

One author reported institutional and research support from LivaNova, UCB, Eisai, Veriton Pharma, Bial, Angelini, UNEEG and Jazz/GW Pharmaceuticals outside the submitted work, and grants from NIHR AI, SBRI and other funding bodies outside this work. The remaining authors declared no possible conflicts of interest. The EQUIP study was funded by the Health Research Board Secondary Data Analysis Award, and IDS-TILDA was funded by the Health Research Board and the Department of Health.

Do not read this as proof that self-reported medication data are accurate for all people with intellectual disability or for all medicines. The comparison covered psychotropic medication data among 292 older IDS-TILDA participants with valid dispensing records, and it did not capture Long-Term Illness scheme prescriptions or dispensing from some services.