PS1-16: Directions for Future Patient-Centered and Comparative Effectiveness Research for People with Serious Mental Illness

Abstract

Background/Aims: Autism spectrum disorders (ASD) are characterized by impairments in social interaction and communication, as well as restricted, stereotyped interests and behaviors. A recent study found that approximately 1 in 88 children in the U.S. were diagnosed with an ASD and that prevalence varied widely among different demographic groups. The goals of this study were to obtain accurate prevalence and incidence statistics for ASD across several large, diverse health systems and to describe the variation of these statistics across demographic factors. Methods: All members within the five participating health systems born between January 1, 1993 and December 31, 2008 with electronic claims, enrollment, or medical record information were included in the study. Information on member demographics and ASD subtypes were collected from earliest available records at each site through the end of December 31, 2010. Individuals with an ASD diagnosis from an ASD specialist or two or more ASD diagnoses from non-specialists were defined as valid cases. Results: A preliminary examination of data from one site (N = 1,271,823) found 10,114 individuals <18 years ever diagnosed with an ASD. Of those 10,114 ASD cases, 8,085 met the validation criteria and were included in final analyses. Prevalence of all ASDs in children ≤8 years old was 1

Healthcare professionals’ perspectives on mental health service provision: a pilot focus group study in six European countries

“…For immigrant and refugee populations community-based care that is culturally-informed, holistic and person-centered care is recommended [58]. Person-centered and community-based approaches are also indicated for those with severe MH challenges [59].…”

Getting by, getting back, and getting on: Matching mental health services to consumers’ recovery goals.

“…Our work suggests that services should be targeted to match goals consistent with recovery phases, even as phases change. A person-centered, responsive mental health service system would anticipate realigning services, adapting to recovery goals and changing service needs rather than requiring consumers to adapt their priorities to a limited set of available services (Green et al, 2014). Evidence-based rehabilitative services that extend beyond symptom resolution and aim for improving functioning and quality of life exist, but few have access to them or to longstanding, trusted clinicians who can facilitate appropriate service utilization.…”

“…Policies are needed that promote inclusion of these broader goals in mental health program planning and outcomes measurement at both individual and systems levels. Moreover, recovery is dynamic and consumers’ goals change over time, therefore care must be dynamic, outcomes measures responsive to changing consumer priorities, and services accommodating and flexible (Green et al, 2014). Finally, if we want consumers to “get on” with their lives, existing evidence-based services that support robust recovery goals need to be offered.…”

“…For example, distinctions have been made between clinical and personal recovery (Anthony, 1993; Slade, Williams, Bird, Leamy, & LeBoutillier, 2012), with the former focusing on symptom reduction through effective mental health treatment with the goal of symptom remission, measured as an outcome (Lieberman et al, 2008) and the latter focusing on recovery as a personal process that may require neither symptom reduction (Deegan, 1988) nor mental health service use (Slade, 2010). Moreover, there is a lack of consensus on how to define recovery (Bellack, 2006; Davidson, Lawless, & Leary, 2005; Davidson, Schmutte, Dinzeo, & Andres-Hyman, 2008; Gordon, 2013; Silverstein & Bellack, 2008; Whitley & Drake, 2010), how to measure it from clinical and consumer points of view (Green et al, 2014; Slade, 2010; Williams et al, 2012), whether it should be measured as a process or an outcome (Andresen, Caputi, & Oades, 2006; Andresen, Oades, & Caputi, 2003; Davidson, Roe, Andres-Hyman, & Ridgway, 2010; Townsend, Boyd, Griffin, & Hicks, 1999), and what should constitute recovery-oriented practices (Lakeman, 2010; LeBoutillier et al, 2011). …”

“…The ways recovery is conceptualized and defined affect the way recovery outcomes are measured (Campbell-Orde, Chamberlin, Carpenter, & Leff, 2005; Donnelly et al, 2011), and should inform the development of recovery-oriented practices as mental health service delivery is reshaped (Green et al, 2014; Kreyenbuhl, Buchanan, Dickerson, & Dixon, 2010). But, clinical measures of recovery tend to focus on symptoms relevant to diagnosis, and do not always adequately evaluate consumer-centered recovery processes or outcomes (Andresen, Caputi, & Oades, 2010; Crawford et al, 2011; Gordon, Ellis, Siegert, & Walkey, 2013).…”