Predictors of Use and Drop Out From a Web-Based Cognitive Behavioral Therapy Program and Health Community for Depression and Anxiety in Primary Care Patients: Secondary Analysis of a Randomized Controlled Trial.

BACKGROUND: A previously reported study examined the treatment of primary care patients with at least moderate severity depressive or anxiety symptoms via an evidence-based computerized cognitive behavioral therapy (CCBT) program (Beating the Blues) and an online health community (OHC) that included a moderated internet support group. The 2 treatment arms proved to be equally successful at 6-month follow-up. OBJECTIVE: Although highly promising, e-mental health treatment programs have encountered high rates of noninitiation, poor adherence, and discontinuation. Identifying ways to counter these tendencies is critical for their success. To further explore these issues, this study identified the primary care patient characteristics that increased the chances patients would not initiate the use of an intervention, (ie, not try it even once), initiate use, and go on to discontinue or continue to use an intervention. METHODS: The study had 3 arms: one received access to CCBT (n=301); another received CCBT plus OHC (n=302), which included a moderated internet support group; and the third received usual care (n=101). Participants in the 2 active intervention arms of the study were grouped together for analyses of CCBT use (n=603) because both arms had access to CCBT, and there were no differences in outcomes between the 2 arms. Analyses of OHC use were based on 302 participants who were randomized to that arm. RESULTS: Several baseline patient characteristics were associated with failure to initiate the use of CCBT, including having worse physical health (measured by the Short Form Health Survey Physical Components Score, P=.01), more interference from pain (by the Patient-Reported Outcomes Measurement Information System Pain Interference score, P=.048), less formal education (P=.02), and being African American or another US minority group (P=.006). Characteristics associated with failure to initiate use of the OHC were better mental health (by the Short Form Health Survey Mental Components Score, P=.04), lower use of the internet (P=.005), and less formal education (P=.001). Those who initiated the use of the CCBT program but went on to complete less of the program had less formal education (P=.01) and lower severity of anxiety symptoms (P=.03). CONCLUSIONS: This study found that several patient characteristics predicted whether a patient was likely to not initiate use or discontinue the use of CCBT or OHC. These findings have clear implications for actionable areas that can be targeted during initial and ongoing engagement activities designed to increase patient buy-in, as well as increase subsequent use and the resulting success of eHealth programs. TRIAL REGISTRATION: ClinicalTrials.gov NCT01482806; https://clinicaltrials.gov/study/NCT01482806.

Lived Experience-Led Research Agenda to Address Early Death in People With a Diagnosis of a Serious Mental Illness: A Consensus Statement.

Importance: People with serious mental illness (SMI), defined as a diagnosis of schizophrenia spectrum disorder, bipolar disorder, or disabling major depressive disorder) die approximately 10 to 25 years earlier than the general population. Objective: To develop the first-ever lived experience-led research agenda to address early mortality in people with SMI. Evidence Review: A virtual 2-day roundtable comprising 40 individuals convened on May 24 and May 26, 2022, and used a virtual Delphi method to arrive at expert group consensus. Participants responded to 6 rounds of virtual Delphi discussion via email that prioritized research topics and agreement on recommendations. The roundtable was composed of individuals with lived experience of mental health and/or substance misuse, peer support specialists, recovery coaches, parents and caregivers of people with SMI, researchers and clinician-scientists with and without lived experience, policy makers, and patient-led organizations. Twenty-two of 28 (78.6%) of the authors who provided data represented people with lived experiences. Roundtable members were selected by reviewing the peer-reviewed and gray literature on early mortality and SMI, direct email, and snowball sampling. Findings: The following recommendations are presented in order of priority as identified by the roundtable participants: (1) improve the empirical understanding of the direct and indirect social and biological contributions of trauma on morbidity and early mortality; (2) advance the role of family, extended families, and informal supporters; (3) recognize the importance of co-occurring disorders and early mortality; (4) redefine clinical education to reduce stigma and support clinicians through technological advancements to improve diagnostic accuracy; (5) examine outcomes meaningful to people with an SMI diagnosis, such as loneliness and sense of belonging, and stigma and their complex relationship with early mortality; (6) advance the science of pharmaceuticals, drug discovery, and choice in medication use; (7) use precision medicine to inform treatment; and (8) redefine the terms system literacy and health literacy. Conclusions and Relevance: The recommendations of this roundtable are a starting point for changing practice and highlighting lived experience-led research priorities as an option to move the field forward.

Correction: Key Variables for Effective eHealth Designs for Individuals With and Without Mental Health Disorders: 212-4 Fractional Factorial Experiment.

[This corrects the article DOI: 10.2196/23137.].

Key Variables for Effective eHealth Designs for Individuals With and Without Mental Health Disorders: 212-4 Fractional Factorial Experiment.

BACKGROUND: eHealth applications not only offer the potential to increase service convenience and responsiveness but also expand the ability to tailor services to improve relevance, engagement, and use. To achieve these goals, it is critical that the designs are intuitive. Limited research exists on designs that work for those with a severe mental illness (SMI), many of whom have difficulty traveling for treatments, reject or infrequently seek treatment, and tend to discontinue treatments for significant periods. OBJECTIVE: This study aims to evaluate the influence of 12 design variables (eg, navigational depth, reading level, and use of navigational lists) on the usability of eHealth application websites for those with and without SMI. METHODS: A 212-4 fractional factorial experiment was used to specify the designs of 256 eHealth websites. This approach systematically varied the 12 design variables. The final destination contents of all websites were identical, and only the designs of the navigational pages varied. The 12 design elements were manipulated systematically to allow the assessment of combinations of design elements rather than only one element at a time. Of the 256 websites, participants (n=222) sought the same information on 8 randomly selected websites. Mixed effect regressions, which accounted for the dependency of the 8 observations within participants, were used to test for main effects and interactions on the ability and time to find information. Classification and regression tree analyses were used to identify effects among the 12 variables on participants' abilities to locate information, for the sample overall and each of the 3 diagnostic groups of participants (schizophrenia spectrum disorder [SSD], other mental illnesses, and no mental illness). RESULTS: The best and worst designs were identified for each of these 4 groups. The depth of a website's navigation, that is, the number of screens users needed to navigate to find the desired content, had the greatest influence on usability (ability to find information) and efficiency (time to find information). The worst performing designs for those with SSD had a 9% success rate, and the best had a 51% success rate: the navigational designs made a 42% difference in usability. For the group with other mental illnesses, the design made a 50% difference, and for those with no mental illness, a 55% difference was observed. The designs with the highest usability had several key design similarities, as did those with the poorest usability. CONCLUSIONS: It is possible to identify evidence-based strategies for designing eHealth applications that result in significantly better performance. These improvements in design benefit all users. For those with SSD or other SMIs, there are designs that are highly effective. Both the best and worst designs have key similarities but vary in some characteristics.

Impact of Patient-Clinical Team Secure Messaging on Communication Patterns and Patient Experience: Randomized Encouragement Design Trial.

BACKGROUND: Although secure messaging (SM) between patients and clinical team members is a recommended component of continuous care, uptake by patients remains relatively low. We designed a multicomponent Supported Adoption Program (SAP) to increase SM adoption among patients using the Veterans Health Administration (VHA) for primary care. OBJECTIVE: Our goals were to (1) conduct a multisite, randomized, encouragement design trial to test the effectiveness of an SAP designed to increase patient engagement with SM through VHA's online patient portal (My HealtheVet [MHV]) and (2) evaluate the impact of the SAP and patient-level SM adoption on perceived provider autonomy support and communication. Patient-reported barriers to SM adoption were also assessed. METHODS: We randomized 1195 patients at 3 VHA facilities who had MHV portal accounts but had never used SM. Half were randomized to receive the SAP, and half served as controls receiving usual care. The SAP consisted of encouragement to adopt SM via mailed educational materials, proactive SM sent to patients, and telephone-based motivational interviews. We examined differences in SM adoption rates between SAP recipients and controls at 9 months and 21 months. Follow-up telephone surveys were conducted to assess perceived provider autonomy support and self-report of telephone communication with clinical teams. RESULTS: Patients randomized to the SAP had significantly higher rates of SM adoption than the control group (101/595, 17.0% vs 40/600, 6.7%; P<.001). Most adopters in the SAP sent their first message without a motivational interview (71/101, 70.3%). The 10-percentage point difference in adoption persisted a full year after the encouragement ended (23.7%, 142/600 in the SAP group vs 13.5%, 80/595 in the control group, P<.001). We obtained follow-up survey data from 49.54% (592/1195) of the participants. SAP participants reported higher perceived provider autonomy support (5.7 vs 5.4, P=.007) and less telephone use to communicate with their provider (68.8% vs 76.0%, P=.05), compared to patients in the control group. Patient-reported barriers to SM adoption included self-efficacy (eg, not comfortable using a computer, 24%), no perceived need for SM (22%), and difficulties with portal password or login (17%). CONCLUSIONS: The multicomponent SAP was successful in increasing use of SM 10 percentage points above standard care; new SM adopters reported improved perceptions of provider autonomy support and less use of the telephone to communicate with their providers. Still, despite the encouragement and technical assistance provided through the SAP, adoption rates were lower than anticipated, reaching only 24% at 21 months (10% above controls). Common barriers to adoption such as limited perceived need for SM may be more challenging to address and require different interventions than barriers related to patient self-efficacy or technical difficulties. TRIAL REGISTRATION: ClinicalTrials.gov NCT02665468; https://clinicaltrials.gov/ct2/show/NCT02665468.

Off-hours use of a smartphone intervention to extend support for individuals with schizophrenia spectrum disorders recently discharged from a psychiatric hospital.

INTRODUCTION: Technology-delivered healthcare interventions may enhance dissemination of evidence-based treatments in low-resource areas. These interventions may be accessed 'on-demand,' including after hours. Patients with schizophrenia do engage with technological aids but when/how they would utilize these tools is not known. METHODS: We conducted a large, prospective, ten-site, longitudinal study of four technology-assisted interventions for patients with schizophrenia spectrum disorders within 60 days of psychiatric hospital discharge, a high risk period. One tool employed was a smartphone intervention called 'FOCUS,' which could be used by patients as needed, providing help in five content areas: medications, mood, social, sleep and voices. Each login was date- and time-stamped as occurring during normal clinic hours, or 'off-hours,' and the pattern of use described. RESULTS: 347 of 368 patients utilized FOCUS during the 6-month study. There were a total of 75,447 FOCUS logins; 35,739 (47.4%) were self-initiated and 38,139 (50.6%) were off-hours. 18,450 of the logins during off-hours were self-initiated (24.5%). No differences in average usage per month were found based on race/ethnicity. A subset of 'high utilizers' (n = 152, 43.8%) self-initiated use of all five FOCUS modules both on- and off-hours. They tended to be women, >35 years old, and had a high school diploma or greater. CONCLUSION: Most patients with schizophrenia spectrum disorders recently discharged from the hospital utilized a smartphone intervention targeted to address troublesome residual symptoms. One quarter of the total smartphone utilization was self-initiated off-hours, indicating the potential utility of this tool to extend support for patients during periods of elevated risk.

The Association Between Increased Levels of Patient Engagement With an Internet Support Group and Improved Mental Health Outcomes at 6-Month Follow-Up: Post-Hoc Analyses From a Randomized Controlled Trial.

BACKGROUND: We recently reported that depressed and anxious primary care patients randomized to a moderated internet support group (ISG) plus computerized cognitive behavioral therapy (cCBT) did not experience improvements in depression and anxiety over cCBT alone at 6-month follow-up. OBJECTIVE: The 1% rule posits that 1% of participants in online communities generate approximately 90% of new user-created content. The aims of this study were to apply the 1% rule to categorize patient engagement with the ISG and identify whether any patient subgroups benefitted from ISG use. METHODS: We categorized the 302 patients randomized to the ISG as: superusers (3/302, 1.0%), top contributors (30/302, 9.9%), contributors (108/302, 35.8%), observers (87/302, 28.8%) and those who never logged in (74/302, 24.5%). We then applied linear mixed models to examine associations between engagement and 6-month changes in health-related quality of life (HRQoL; Short Form Health Survey Mental Health Component, SF-12 MCS) and depression and anxiety symptoms (Patient-Reported Outcomes Measurement Information System, PROMIS). RESULTS: At baseline, participant mean age was 42.6 years, 81.1% (245/302) were female, and mean Patient Health Questionnaire (PHQ-9), Generalized Anxiety Disorder scale (GAD-7), and SF-12 MCS scores were 13.4, 12.6, and 31.7, respectively. Of the 75.5% (228/302) who logged in, 61.8 % (141/228) created ≥1 post (median 1, interquartile range, IQR 0-5); superusers created 42.3 % (630/1488) of posts (median 246, IQR 78-306), top contributors created 34.6% (515/1488; median 11, IQR 10-18), and contributors created 23.1 % (343/1488; median 3, IQR 1-5). Compared to participants who never logged in, the combined superuser + top contributor subgroup (n=33) reported 6-month improvements in anxiety (PROMIS: -11.6 vs -7.8; P=.04) and HRQoL (SF-12 MCS: 16.1 vs 10.1; P=.01) but not in depression. No other subgroup reported significant symptom improvements. CONCLUSIONS: Patient engagement with the ISG was more broadly distributed than predicted by the 1% rule. The 11% of participants with the highest engagement levels reported significant improvements in anxiety and HRQoL. TRIAL REGISTRATION: ClinicalTrials.gov NCT01482806; https://clinicaltrials.gov/ct2/show/NCT01482806 (Archived by WebCite at http://www.webcitation.org/708Bjlge9).

Effectiveness of Online Collaborative Care for Treating Mood and Anxiety Disorders in Primary Care: A Randomized Clinical Trial.

Importance: Collaborative care for depression and anxiety is superior to usual care from primary care physicians for these conditions; however, challenges limit its provision in routine practice and at scale. Advances in technology may overcome these barriers but have yet to be tested. Objective: To examine the effectiveness of combining an internet support group (ISG) with an online computerized cognitive behavioral therapy (CCBT) provided via a collaborative care program for treating depression and anxiety vs CCBT alone and whether providing CCBT in this manner is more effective than usual care. Design, Setting, and Participants: In this 3-arm randomized clinical trial with blinded outcome assessments, primary care physicians from 26 primary care practices in Pittsburgh, Pennsylvania, referred 2884 patients aged 18 to 75 years in response to an electronic medical record prompt from August 2012 to September 2014. Overall, 704 patients (24.4%) met all eligibility criteria and were randomized to CCBT alone (n = 301), CCBT+ISG (n = 302), or usual care (n = 101). Intent-to-treat analyses were conducted November 2015 to January 2017. Interventions: Six months of guided access to an 8-session CCBT program provided by care managers who informed primary care physicians of their patients' progress and promoted patient engagement with our online programs. Main Outcomes and Measures: Mental health-related quality of life (12-Item Short-Form Health Survey Mental Health Composite Scale) and depression and anxiety symptoms (Patient-Reported Outcomes Measurement Information System) at 6-month follow-up, with treatment durability assessed 6 months later. Results: Of the 704 randomized patients, 562 patients (79.8%) were female, and the mean (SD) age was 42.7 (14.3) years. A total of 604 patients (85.8%) completed our primary 6-month outcome assessment. At 6-month assessment, 254 of 301 patients (84.4%) receiving CCBT alone started the program (mean [SD] sessions completed, 5.4 [2.8]), and 228 of 302 patients (75.5%) in the CCBT+ISG cohort logged into the ISG at least once, of whom 141 (61.8%) provided 1 or more comments or posts (mean, 10.5; median [range], 3 [1-306]). Patients receiving CCBT+ISG reported similar 6-month improvements in mental health-related quality of life, mood, and anxiety symptoms compared with patients receiving CCBT alone. However, compared with patients receiving usual care, patients in the CCBT alone cohort reported significant 6-month effect size improvements in mood (effect size, 0.31; 95% CI, 0.09-0.53) and anxiety (effect size, 0.26; 95% CI, 0.05-0.48) that persisted 6 months later, and completing more CCBT sessions produced greater effect size improvements in mental health-related quality of life and symptoms. Conclusions and Relevance: While providing moderated access to an ISG provided no additional benefit over guided CCBT at improving mental health-related quality of life, mood, and anxiety symptoms, guided CCBT alone is more effective than usual care for these conditions. Trial Registration: clinicaltrials.gov Identifier: NCT01482806.

Designing eHealth Applications to Reduce Cognitive Effort for Persons With Severe Mental Illness: Page Complexity, Navigation Simplicity, and Comprehensibility.

BACKGROUND: eHealth technologies offer great potential for improving the use and effectiveness of treatments for those with severe mental illness (SMI), including schizophrenia and schizoaffective disorder. This potential can be muted by poor design. There is limited research on designing eHealth technologies for those with SMI, others with cognitive impairments, and those who are not technology savvy. We previously tested a design model, the Flat Explicit Design Model (FEDM), to create eHealth interventions for individuals with SMI. Subsequently, we developed the design concept page complexity, defined via the design variables we created of distinct topic areas, distinct navigation areas, and number of columns used to organize contents and the variables of text reading level, text reading ease (a newly added variable to the FEDM), and the number of hyperlinks and number of words on a page. OBJECTIVE: The objective of our study was to report the influence that the 19 variables of the FEDM have on the ability of individuals with SMI to use a website, ratings of a website's ease of use, and performance on a novel usability task we created termed as content disclosure (a measure of the influence of a homepage's design on the understanding user's gain of a website). Finally, we assessed the performance of 3 groups or dimensions we developed that organize the 19 variables of the FEDM, termed as page complexity, navigational simplicity, and comprehensibility. METHODS: We measured 4 website usability outcomes: ability to find information, time to find information, ease of use, and a user's ability to accurately judge a website's contents. A total of 38 persons with SMI (chart diagnosis of schizophrenia or schizoaffective disorder) and 5 mental health websites were used to evaluate the importance of the new design concepts, as well as the other variables in the FEDM. RESULTS: We found that 11 of the FEDM's 19 variables were significantly associated with all 4 usability outcomes. Most other variables were significantly related to 2 or 3 of these usability outcomes. With the 5 tested websites, 7 of the 19 variables of the FEDM overlapped with other variables, resulting in 12 distinct variable groups. The 3 design dimensions had acceptable coefficient alphas. Both navigational simplicity and comprehensibility were significantly related to correctly identifying whether information was available on a website. Page complexity and navigational simplicity were significantly associated with the ability and time to find information and ease-of-use ratings. CONCLUSIONS: The 19 variables and 3 dimensions (page complexity, navigational simplicity, and comprehensibility) of the FEDM offer evidence-based design guidance intended to reduce the cognitive effort required to effectively use eHealth applications, particularly for persons with SMI, and potentially others, including those with cognitive impairments and limited skills or experience with technology. The new variables we examined (topic areas, navigational areas, columns) offer additional and very simple ways to improve simplicity.

mHealth for Schizophrenia: Patient Engagement With a Mobile Phone Intervention Following Hospital Discharge.

BACKGROUND: mHealth interventions that use mobile phones as instruments for illness management are gaining popularity. Research examining mobile phone‒based mHealth programs for people with psychosis has shown that these approaches are feasible, acceptable, and clinically promising. However, most mHealth initiatives involving people with schizophrenia have spanned periods ranging from a few days to several weeks and have typically involved participants who were clinically stable. OBJECTIVE: Our aim was to evaluate the viability of extended mHealth interventions for people with schizophrenia-spectrum disorders following hospital discharge. Specifically, we set out to examine the following: (1) Can individuals be engaged with a mobile phone intervention program during this high-risk period?, (2) Are age, gender, racial background, or hospitalization history associated with their engagement or persistence in using a mobile phone intervention over time?, and (3) Does engagement differ by characteristics of the mHealth intervention itself (ie, pre-programmed vs on-demand functions)? METHODS: We examined mHealth intervention use and demographic and clinical predictors of engagement in 342 individuals with schizophrenia-spectrum disorders who were given the FOCUS mobile phone intervention as part of a technology-assisted relapse prevention program during the 6-month high-risk period following hospitalization. RESULTS: On average, participants engaged with FOCUS for 82% of the weeks they had the mobile phone. People who used FOCUS more often continued using it over longer periods: 44% used the intervention over 5-6 months, on average 4.3 days a week. Gender, race, age, and number of past psychiatric hospitalizations were associated with engagement. Females used FOCUS on average 0.4 more days a week than males. White participants engaged on average 0.7 days more a week than African-Americans and responded to prompts on 0.7 days more a week than Hispanic participants. Younger participants (age 18-29) had 0.4 fewer days of on-demand use a week than individuals who were 30-45 years old and 0.5 fewer days a week than older participants (age 46-60). Participants with fewer past hospitalizations (1-6) engaged on average 0.2 more days a week than those with seven or more. mHealth program functions were associated with engagement. Participants responded to prompts more often than they self-initiated on-demand tools, but both FOCUS functions were used regularly. Both types of intervention use declined over time (on-demand use had a steeper decline). Although mHealth use declined, the majority of individuals used both on-demand and system-prompted functions regularly throughout their participation. Therefore, neither function is extraneous. CONCLUSIONS: The findings demonstrated that individuals with schizophrenia-spectrum disorders can actively engage with a clinically supported mobile phone intervention for up to 6 months following hospital discharge. mHealth may be useful in reaching a clinical population that is typically difficult to engage during high-risk periods.

Coordinated Technology-Delivered Treatment to Prevent Rehospitalization in Schizophrenia: A Novel Model of Care.

Despite advances in schizophrenia treatment, symptom relapses and rehospitalizations impede recovery for many people and are a principal driver of the high cost of care. Technology-delivered or technology-enhanced treatment may be a cost-effective way to provide flexible, personalized evidence-based treatments directly to people in their homes and communities. However, evidence for the safety, acceptability, and efficacy of such interventions is only now being established. The authors of this Open Forum describe a novel, technology-based approach to prevent relapse after a hospitalization for psychosis, the Health Technology Program (HTP), which they developed. HTP provides in-person relapse prevention planning that directs use of tailored, technology-based treatment based on cognitive-behavioral therapy for psychosis, family psychoeducation for schizophrenia, and prescriber decision support through a Web-based program that solicits information from clients at every visit. Technology-based treatments are delivered through smartphones and computers.

Critical design elements of e-health applications for users with severe mental illness: singular focus, simple architecture, prominent contents, explicit navigation, and inclusive hyperlinks.

OBJECTIVE: E-health applications are becoming integral components of general medical care delivery models and emerging for mental health care. Few exist for treatment of those with severe mental illness (SMI). In part, this is due to a lack of models to design such technologies for persons with cognitive impairments and lower technology experience. This study evaluated the effectiveness of an e-health design model for persons with SMI termed the Flat Explicit Design Model (FEDM). METHODS: Persons with schizophrenia (n = 38) performed tasks to evaluate the effectiveness of 5 Web site designs: 4 were prominent public Web sites, and 1 was designed according to the FEDM. Linear mixed-effects regression models were used to examine differences in usability between the Web sites. Omnibus tests of between-site differences were conducted, followed by post hoc pairwise comparisons of means to examine specific Web site differences when omnibus tests reached statistical significance. RESULTS: The Web site designed using the FEDM required less time to find information, had a higher success rate, and was rated easier to use and less frustrating than the other Web sites. The home page design of one of the other Web sites provided the best indication to users about a Web site's contents. The results are consistent with and were used to expand the FEDM. CONCLUSIONS: The FEDM provides evidence-based guidelines to design e-health applications for person with SMI, including: minimize an application's layers or hierarchy, use explicit text, employ navigational memory aids, group hyperlinks in 1 area, and minimize the number of disparate subjects an application addresses.

Web-based psychoeducational intervention for persons with schizophrenia and their supporters: one-year outcomes.

OBJECTIVE: This study examined the use of a uniquely designed Web site and home computers to deliver online multifamily psychoeducational therapy to persons with schizophrenia and their informal supports (family and friends). Web site usage and outcome benefits are reported. METHODS: Thirty-one persons with schizophrenia or schizoaffective disorder and 24 support persons were randomly assigned to the online intervention (telehealth) or treatment as usual (usual care) condition. At three, six, and 12 months, interviewer-administered assessments were conducted with participants. Intention-to-treat analyses compared persons with schizophrenia in the two study conditions on severity of positive symptoms and knowledge of schizophrenia. Support persons in the two study conditions were compared on knowledge of schizophrenia. Each participant's usage of the Web site was logged. RESULTS: Persons with schizophrenia in the telehealth condition had a large and significant reduction in positive symptoms (p=.042, d=-.88) and a large and significant increase in knowledge of schizophrenia compared with their counterparts in the usual care condition. Support persons in the telehealth condition showed a large and significant increase in knowledge about prognosis compared with those in the usual care condition (p=.036, d=1.94). Persons with schizophrenia used the Web site to a much greater extent (pages viewed and time spent) than support persons. CONCLUSIONS: These findings suggest that online delivery of psychotherapeutic treatment and educational resources to consumers' homes has considerable potential to improve consumer well-being and offers several advantages over standard clinic-based delivery models.

The family forum: directions for the implementation of family psychoeducation for severe mental illness.

It is well documented that family psychoeducation decreases relapse rates of individuals with schizophrenia. Despite the evidence, surveys indicate that families have minimal contact with their relative's treatment team, let alone participate in the evidence-based practice of family psychoeducation. The Department of Veterans Affairs (VA) sponsored a conference, the Family Forum, to assess the state of the art regarding family psychoeducation and to form a consensus regarding the next steps to increase family involvement. The forum reached consensus on these issues: family psychoeducation treatment models should be optimized by efforts to identify the factors mediating their success in order to maximize dissemination; leadership support, training in family psychoeducation models for managers and clinicians, and adequate resources are necessary to successfully implement family psychoeducation; because family psychoeducation may not be appropriate, indicated, or acceptable for all families, additional complementary strategies are needed that involve families in the mental health care of the patient; and work is required to develop and validate instruments that appropriately assess the intervention process and consumer and family outcomes. A treatment heuristic for working with families of persons with severe mental illness is also offered and provides a match of interventions at varying levels of intensity, tailored to family and consumer needs and circumstances. The article describes opportunities for the research and clinical communities to expand the proportion of families served.

Quality of life for persons living with schizophrenia: more than just symptoms.

Quality of life is an important outcome for persons living with schizophrenia and for the treatment of schizophrenia. However, studies of quality of life among persons living with schizophrenia have focused primarily on the symptoms experienced by the individual. This study sought to determine the influence of unmet need and social support on the quality of life of individuals with schizophrenia. Thirty-two persons living in the community with schizophrenia or schizoaffective disorder were assessed on quality of life, psychopathology, unmet need and social support. Hierarchical regression analyses indicated that unmet need and social support are important contributors to the quality of life of a person with schizophrenia, even after controlling for symptoms. Implications for schizophrenia treatment are discussed.

A qualitative needs assessment of persons who have experienced traumatic brain injury and their primary family caregivers.

OBJECTIVES: To determine the expressed needs of persons with traumatic brain injury (TBI) and their primary family caregivers. DESIGN: Semistructured interviews with content-analytic techniques to identify respondents' needs. PARTICIPANTS: Eighty persons with TBI, with an average time since their most severe TBI of 5.8 years, and 85 primary support persons. RESULTS: Respondents described their needs via phases that paralleled transitions in settings, treatments, and responsibilities (ie, acute care, in-patient rehabilitation, return home, and living in the community). Prominent themes during in-patient phases included provider quality, emotional support, and understanding the injuries. Prominent themes during the latter 2 phases included guidance, life planning, community integration, and behavioral and emotional issues. CONCLUSIONS: Participants reported insufficient education and preparation for the future. Current methods of identifying needs may not be based on these populations' perceptions, and often miss the natural divisions of needs that occur over the course of treatment and rehabilitation. To meet their needs, services must be responsive to changes in needs over time, accessible to consumers of services for as long as they are required, and designed to be directed and customized by users.

Informal caregiver burden among survivors of prolonged mechanical ventilation.

RATIONALE: Although caregiver burden is well described in chronic illness, few studies have examined burden among caregivers of survivors of critical illness. In existing studies, it is unclear whether the observed burden is a consequence of critical illness or of preexisting patient illness. OBJECTIVES: To describe 1-yr longitudinal outcomes for caregivers of patients who survived critical illness, and to compare depression risk between caregivers of patients with and without pre-intensive care unit (ICU) functional dependency. METHODS: Prospective, parallel, cohort study of survivors of prolonged (greater than 48 h) mechanical ventilation and their informal caregivers. Caregivers were divided into two cohorts on the basis of whether patients were functionally independent (n = 99, 59%), or dependent (n = 70, 41%) before admission. Functional dependency was defined as dependency in one or more activities of daily living or in three or more instrumental activities of daily living. Patient and caregiver outcomes were measured 2, 6, and 12 mo after mechanical ventilation initiation. MEASUREMENTS AND MAIN RESULTS: We studied three caregiver outcomes: depression risk, lifestyle disruption, and employment reduction. Most patients were male (59.8%), with a mean (SD) age of 56.6 (19.0) yr. Caregivers were mostly female (75.7%), with a mean (SD) age of 54.6 (14.7) yr. Prevalence of caregiver depression risk was high at all time points (33.9, 30.8, and 22.8%; p = 0.83) and did not vary by patient pre-ICU functional status. Lifestyle disruption and employment reduction were also common and persistent. CONCLUSIONS: Depression symptoms, lifestyle disruption, and employment reduction were common among informal caregivers of critical illness survivors. Depression risk was high regardless of patient pre-ICU functional status.

Designing websites for persons with cognitive deficits: Design and usability of a psychoeducational intervention for persons with severe mental illness.

The purpose of this study was to develop an understanding of the design elements that influence the ability of persons with severe mental illness (SMI) and cognitive deficits to use a website, and to use this knowledge to design a web-based telehealth application to deliver a psychoeducation program to persons with schizophrenia and their families. Usability testing was conducted with 98 persons with SMI. First, individual website design elements were tested. Based on these results, theoretical website design models were used to create several alternative websites. These designs were tested for their ability to facilitate use by persons with SMI. The final website design is presented. The results indicate that commonly prescribed design models and guidelines produce websites that are poorly suited and confusing to persons with SMI. Our findings suggest an alternative model that should be considered when designing websites and other telehealth interventions for this population. Implications for future studies addressing the characteristics of accessible designs for persons with SMI and cognitive deficits are discussed.