Researching outcomes from forensic services for people with intellectual or developmental disabilities: a systematic review, evidence synthesis and expert and patient/carer consultation

Abstract

BackgroundInpatient services for people with intellectual and other types of developmental disabilities (IDD) who also have forensic or risk issues are largely provided in secure hospitals. Although this is a health service sector with high levels of expenditure, there is limited empirical information on patient outcomes from such services. In order for a future substantive longitudinal outcomes study in forensic IDD services to be informed and feasible, more needs to be understood about the outcome domains that are of relevance and importance and how they should be measured. A preliminary series of studies was therefore undertaken.ObjectivesTo synthesise evidence in relation to the outcome domains that have been researched in the existing literature from hospital and community forensic services for people with IDD, within the broad domains of service effectiveness, patient safety and patient experience. To identify a definitive framework of outcome domains (and associated measures and indicators) based both on this research evidence and on the views of patients, carers and clinicians. To synthesise the information gathered in order to inform design of future multisite longitudinal research in the sector.DesignThree linked studies were conducted. Stage 1 was a systematic review and evidence synthesis of outcome domains and measures as found within the forensic IDD literature. Stage 2 was a consultation exercise with 15 patients with IDD and six carers. Stage 3 was a modified Delphi consensus exercise with 15 clinicians and experts using the information gathered at stages 1 and 2.ResultsAt stage 1, 60 studies that researched a range of outcomes in forensic IDD services were identified from the literature. This resulted in the construction of an initial framework of outcome domains. The consultation with patients and carers at stage 2 added to these framework domains that related particularly to carer experience and the level of support post discharge in the community. The Delphi process at stage 3 confirmed the validity of the resulting framework for clinician. This survey also identified the outcome measures preferred by clinicians and those that are currently utilised in services. Thus, indicators of appropriate measures in some important domains were identified, although there was a paucity of measures in other domains.ConclusionsTogether, these three linked studies led to the development of an evidence-based framework of key outcome domains and subdomains. A provisional list of associated measures and indicators was developed, although with the paucity of measures in some domains development of specific indicators may be required. With further refinement this could eventually be utilised by services and commissioners for comparative purposes, and in future empirical research on outcomes in forensic IDD services. An outline research proposal closely linked to recent policy initiatives was proposed. Limitations of the study include the relatively small number of carers and patients and range of experts consulted.Future workThis would comprise a national longitudinal study tracking IDD in patients through hospitalisation and discharge.Study registrationThis study is registered as PROSPERO CRD42015016941.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

Long-stay patients with and without intellectual disability in forensic psychiatric settings: comparison of characteristics and needs

“…This has addressed observed methodological issues with previously published treatment outcome studies, many of which were single service, and report patients' LoS in relation to their stay within that service only. 2 , 25 This is problematic, as unit moves are common within the long-stay group, with patients having an average of 1.43 unit changes in their pathway, with 31% having been in two settings, 23% in three settings and 18% in four or more settings within their continuous care pathway. 1 The difference between these two figures for both the intellectual disability and non-intellectual disability groups was considerable, at a median of 5.92 and 8.33 years, respectively.…”

Developing a strategic model of participation in policy development for nurses

“…The researchers selected and briefed the panel of experts. Little literature is available regarding the number of experts needed for a Delphi expert panel (Shelton & Creghan ), but 15–20 experts seem to be standard based on a review of published Delphi studies (Morrissey et al ). Purposive sampling was used in the recruitment of panel experts.…”

People with Intellectual and Developmental Disorders in the United Kingdom Criminal Justice System

“…32 The Code of Practice 26 recommends that people with IDD have the right to have an appropriate adult in attendance at the police interview, programmes designed to rehabilitate, 11,12 and assessed how to best evaluate treatment outcomes. 13,14 Nevertheless, people with IDD remain a vulnerable group. In 2009, the Bradley Report, which focused on people with mental health problems or IDD in the CJS was published.…”

“…In the majority of cases, discharge is prompted by the care programme approach process, and linked to the everyday improvement and recovery of patients, as well as the availability of suitable community supervision, or placement options. 13,14 A number of studies have evaluated the outcomes of patients within inpatient secure IDD services. One study reported that of 138 patients treated over a 6-year period, 77 were discharged and 61 were current inpatients.…”

“…73 A recent systematic review of the outcome domains of relevance to inpatient secure IDD services identified 18 studies which examined formal reoffending (ie, formal charges and convictions) of patients discharged from inpatient secure IDD services at follow-up. 13,14 Lindsay et al 74 completed a 20-year follow-up study which evaluated the outcomes of 309 people from a 1986-to-2008 cohort of offenders referred to specialist inpatient secure IDD services, reporting that 16% of male sexual offenders, 43% of male nonsexual offenders, and 23% of female offenders committed at least one further offence. Alexander et al 75 reported on 1182 patients discharged from four medium secure services between 1992 and 2001 in the UK, who committed serious/violent convictions at 1-, 2-and 5-year follow-up.…”