The DOSMED STUDY - narrative summaries
As well as the numerous standardised rating scales, a clinical description was made of each subject, at entry into the study and at the subsequent one-year and two-year follow-ups. These narrative summaries were formally recorded in the “Diagnostic and Prognostic Schedule” at study entry and year 2 follow-up, and “Diagnostic Statements” at the year 1 follow-up (see Appendix below).
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In 2021, the four filing-cabinets containing the study data from the Nottingham arm - 3 folders (study entry, year 1, year 2) - 460 pages per subject - had been moved from a dedicated room in Duncan Macmillan House curated by Professor John Cooper, to a non-environmentally-controlled facility for operational paperwork with a limited storage life. The risk was growing that, as had been the case in many of the other DoSMeD centres, the records would be destroyed. It was felt that this would be a pity, given the pivotal nature of this study in the development of internationally-agreed criteria for diagnosis, as well as its role as the first systematic description of outcomes in psychotic illness.
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After almost half a century, the paper records had suffered a little attrition. Two subjects had one follow-up missing, and three subjects’ records had disappeared entirely. Narratives were not available at all time points for all subjects.
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It was therefore decided to include, when the ‘formal’ narrative was not present at that time-point, the narrative on page 15 of the ‘Psychiatric and Personal History Schedule Score Sheet’: “Write in or attach a narrative description of the patient’s progress”.
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(While it was tempting to include any handwritten notes made in the margins of the schedules themselves, these were not at all consistent between records and would have added greatly to the paper record to be archived)
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Other clinical narratives had been placed in the folder, such as assessment letters. In some cases these seemed to explicitly replace the formal narrative, but in others they were included in the absence of any formal narrative. Some subjects had further material, such as admission summaries, case conference notes, social work reports and ‘interviewers notes’, which it seemed prudent to include where narrative summaries were not available. Much more occasional material e.g. letters from relatives/patients, social worker reports lacking description of mental state, court reports, was not included.
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These narrative documents are in files by subject, each item marked with subject ID number (1-99) and a number 0,1 or 2 referring to study entry, year 1 or year 2 follow-up.
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These narratives, available in paper form only, are viewable on request at the Nottingham University Special Collections reading room.
Dr Stuart Leask, Nottingham. December 2022