OBJECTIVE:This study aimed to develop and pilot the Clinical High Risk for Psychosis Services Fidelity Scale (CHRPS-FS). METHODS:A literature review was conducted to identify evidence-based treatments for individuals at clinical high risk for psychosis (CHRP). These findings were compared with the First-Episode Psychosis Services Fidelity Scale (FEPS-FS). Common items were retained, and others were added, modified, or deleted. Next, the Delphi process was conducted with 17 clinical and academic experts in CHRP care to determine consensus on the importance and validity of each item. Concurrently, the preliminary tool was piloted in eight coordinated specialty care (CSC) clinics serving individuals with CHRP. RESULTS:The literature review identified two components of CHRP care that were not detailed in the FEPS-FS and were added to the CHRPS-FS; furthermore, one FEPS-FS item was modified and six were removed. In the Delphi process, clinical and academic experts achieved a consensus of >80% in two rounds, with some changes in item wording and the addition of one item (stepped care approach). A CHRPS-FS assessment was successfully piloted in eight CSC clinics. The mean CHRPS-FS rating score was 3.96 (range 3.75-4.23), and the median proportion of items rated at good to high fidelity was 72% (range 66%-78%). CONCLUSIONS:The CHRP-FS is feasible to implement, has face validity based on expert consensus, can be completed in conjunction with a FEPS-FS assessment or alone, and captures variability across programs. The CHRPS-FS measures service delivery and is suitable for clinical trials, learning health care systems, and quality improvement efforts.
Despite the substantial capacity of qualitative and mixed methods research to advance healthcare and interventions knowledge, most large-scale health intervention trials exclusively use quantitative methods. The authors argue that qualitative research can optimize investments in these studies. As researchers within the Early Psychosis Intervention Network (EPINET), the authors highlight examples of how qualitative research has enhanced this national initiative, organizing them with a Learning Health System (LHS) framework to demonstrate the ways qualitative research can increase value at each phase of a health trial. They emphasize the critical need for integrating qualitative research from the beginning of health trials, ensuring its influence in decision-making, creating infrastructure to support it, and promoting meaningful representation within research teams. By illustrating the advantages of qualitative research in EPINET, they advocate for sustained commitment to qualitative research in health trials to maximize value in client and provider experience, cost, and population health.
Using data collected in routine care delivery to inform treatment is a key feature of a learning health system (LHS). In this study, we explored the experiences of service users and providers adopting measurement-based care (MBC) in early psychosis (EP) specialty care settings. Qualitative interviews were conducted with 32 providers and 12 service users across 18 programs in the Early Psychosis Intervention Network of California (EPI-CAL). These findings were compared with quantitative data from Beehive, EPI-CAL's data collection and review application. Regarding the clinical benefits of MBC in EP, three broad themes were identified - supporting safety monitoring and response, the assessment process, and delivery of psychotherapy. Outside of direct clinical care, Beehive was considered to support clinical supervision and external reporting, while service users reported data collection facilitated self-reflection. In the quantitative Beehive application data collected from 23 EP programs, high utilization of the safety alert system was evident (349 alerts in total, of which 338 [96.85 %] were resolved at a median of 2.03 days). However, service users' key survey data was only reviewed by assigned providers in 32.22 % (142 of 441) of cases. While providers and service users saw many benefits to Beehive, utilization was highly inconsistent outside of the alert system. Going forward, further consideration of how best to support EP providers to consistently use data in care is necessary to maximize the utility of the LHS approach and positively impact outcomes.
Objective: Learning health care networks can significantly improve the effectiveness, consistency, and cost-effectiveness of care delivery. As part of a data harmonization process, incorporation of the perspectives of community partners to maximize the relevance and utility of the data is critical. Methods: A mixed-methods focus group study was conducted with early psychosis program providers, leadership, service users, and family members to explore their priorities regarding data collection in early psychosis care. Focus group transcripts were analyzed through thematic analysis. Results: Twenty-two focus groups comprising 178 participants were conducted across 10 early psychosis programs. Participants considered functioning, quality of life, recovery, and symptoms of psychosis as key outcomes to assess, although variation by participants' roles was also evident. Participants emphasized the clinical utility of assessing a broad range of predictors of care outcomes, favored a broad conceptualization of the constructs assessed, and indicated a preference for client-reported measures. Participants also emphasized the importance of surveys adopting a recovery-oriented, strengths-based approach. Conclusions: Large-scale aggregation of health care data collected as part of routine care offers opportunities for research and may have a positive impact on care delivery and quality improvement activities. However, these benefits are contingent on the data being both relevant and accessible to those who deliver and receive such care. This study highlights an approach that may inform the development of core assessment batteries used, optimizing the utility of such data for all community partners.
BackgroundA prolonged first episode of psychosis (FEP) without adequate treatment is a predictor of poor clinical, functional, and health outcomes and significant economic burden. Team-based "coordinated specialty care" (CSC) for early psychosis (EP) has established effectiveness in promoting clinical and functional recovery. However, California's CSC program implementation has been unsystematic and could benefit from standardizing its processes and data collection infrastructure. To address this, we established a consortium of EP clinics across the state via a Learning Health Care Network (LHCN) framework to develop the Early Psychosis Intervention Network of California (EPI-CAL). EPI-CAL's LHCN developed a core battery of evidence-based measures for service users and family members and linked them together using a unique data collection and visualization application, Beehive.Methods and objectivesEPI-CAL's LHCN collects, visualizes, and aggregates data at the individual and clinic level for EP programs across California via Beehive. Beehive was designed to: (1) collect outcomes data from service users receiving care at EP programs and their support persons, (2) provide the data to providers on a secure web-based dashboard to support measurement-based care, and (3) allow data to be used for program or research analysis. We will (1) determine the feasibility of implementing an LHCN across a diverse, decentralized network of early psychosis programs, (2) determine if the implementation of an LHCN increases the delivery of measurement-based care, and (3) determine if the implementation of measurement-based care is associated with significant improvements in key service user outcomes. EPI-CAL's network will contribute data to the Early Psychosis Intervention Network (EPINET) program.DiscussionThe current study aims to establish an LHCN of EP clinics in California that implements harmonized data collection using Beehive and assesses the feasibility of establishing such a network. Our goal is for this harmonized data collection approach to be used to inform decisions and develop learning opportunities for service users, staff, and administrators, and to improve outcomes for service users and their supporters in CSC care. Further, the data will enable programs and research teams to examine what elements of care lead to program success and improved treatment outcomes for service users.Clinical trials registrationwww.ClinicalTrials.gov, identifier NCT04007510; registered 07/05/2019.
The EPI-CAL project, a learning health care network (LHCN) of California early psychosis intervention (EPI) programs, prioritized incorporation of community partner feedback while designing its eHealth application, Beehive. Though eHealth applications can support LHCN data collection aims, low user acceptance or adoption can pose barriers to successful implementation. Adopting user-centered design approaches, such as incorporation of user feedback and continuous evaluation, can mitigate these potential barriers. We employed user-centered design during development of a data-collection and data-visualization eHealth application, Beehive, to promote engagement with Beehive as part of standard EPI care across a diverse user-base. We conducted user-centered design workshops with service users, their support persons, and EPI providers during Beehive storyboarding and alpha testing. We incorporated feedback from these workshopsinto the beta version of the application. Then, after receiving training, four EPI programs piloted Beehive’s beta version. During piloting, service users and their primary support persons (PSPs) completed Beehive surveys at enrollment and every 6 months after treatment initiation. To examine preliminary user acceptance and adoption during the piloting phase, we assessed rates of participant enrollment and survey completion, with a particular focus on the Modified Colorado Symptom Index (MCSI). User-centered design workshop feedback resulted in the creation of new workflows and interface changes in Beehive to improve the user experience. During piloting, 48 service users, 42 PSPs, and 72 EPI program providers enrolled in Beehive. Data is available for 88% (n=42) of service users, including self-reported data for 79% (n=38), collateral-reported data for 42% (n=20), and clinician-entered data for 17% (n=8). The MCSI was completed by 54% (n=26) of service users (total score: M=24.16, SD=16.81 and 56% (n=19) of support persons (M=26.71, SD=14.43). Implementing user-centered designed while developing the Beehive application resulted in early development workflow changes and produced an application that was acceptable and feasible for collection of self-reported clinical outcomes data from service users. Additional support is needed to increase collateral-reported and clinician-entered data. NCT04007510
Background Increased use of eHealth technology and user data to drive early identification and intervention algorithms in early psychosis (EP) necessitates the implementation of ethical data use practices to increase user acceptability and trust. Objective First, the study explored EP community partner perspectives on data sharing best practices, including beliefs, attitudes, and preferences for ethical data sharing and how best to present end-user license agreements (EULAs). Second, we present a test case of adopting a user-centered design approach to develop a EULA protocol consistent with community partner perspectives and priorities. Methods We conducted an exploratory, qualitative, and focus group–based study exploring mental health data sharing and privacy preferences among individuals involved in delivering or receiving EP care within the California Early Psychosis Intervention Network. Key themes were identified through a content analysis of focus group transcripts. Additionally, we conducted workshops using a user-centered design approach to develop a EULA that addresses participant priorities. Results In total, 24 participants took part in the study (14 EP providers, 6 clients, and 4 family members). Participants reported being receptive to data sharing despite being acutely aware of widespread third-party sharing across digital domains, the risk of breaches, and motives hidden in the legal language of EULAs. Consequently, they reported feeling a loss of control and a lack of protection over their data. Participants indicated these concerns could be mitigated through user-level control for data sharing with third parties and an understandable, transparent EULA, including multiple presentation modalities, text at no more than an eighth-grade reading level, and a clear definition of key terms. These findings were successfully integrated into the development of a EULA and data opt-in process that resulted in 88.1% (421/478) of clients who reviewed the video agreeing to share data. Conclusions Many of the factors considered pertinent to informing data sharing practices in a mental health setting are consistent among clients, family members, and providers delivering or receiving EP care. These community partners’ priorities can be successfully incorporated into developing EULA practices that can lead to high voluntary data sharing rates.
BACKGROUND AND OBJECTIVES Older adults with cognitive impairment often experience poor oral health outcomes due to inadequate oral hygiene practices. This pilot study aimed to evaluate the feasibility of a care partner-assisted intervention to improve the oral hygiene of community-dwelling older adults with cognitive impairment. MATERIAL AND METHODS The 6-month intervention included 25 older adults with mild dementia or mild cognitive impairment, who were randomly assigned to Treatment Group 1 or Treatment Group 2. Treatment Group 1 (n = 7) received an educational booklet. Treatment Group 2 (n = 18) received a booklet, a tailored care plan for the participants with cognitive impairment and the care partner received four coaching sessions to learn to facilitate good oral hygiene. Both groups received electric toothbrushes. The study consisted of a 3-month active intervention and 3-month maintenance phase. The outcomes of gingival index, plaque index and overall oral health status based on the Oral Health Assessment Tool were measured at baseline, 3 months (end of active intervention) and 6 months of the study. RESULTS This study had very low dropout rate. Participants' oral hygiene improved in this study. In comparison to Treatment Group 1, participants in Treatment Group 2 had a greater reduction in plaque level and gingival inflammation, and greater improvement in overall oral health status. CONCLUSION This study demonstrates the feasibility of this intervention designed to improve the oral health of persons with cognitive impairment and it lays the foundation for using this protocol in a future large randomised clinical trial.
Background: Although schizophrenia is classically thought to involve impaired attentional filtering, people with schizophrenia (PSZ) exhibit a more intense and more exclusive attentional focus than healthy control subjects (HCS), referred to as hyperfocusing, in many tasks.A potential explanation for this contradiction relates to the distinction between control and implementation of selective attention.Control processes steer the attentional focus to the relevant sources of information, while implementation of selective attention refers to the actual amplification of the selected source relative to others.Selective attention may be impaired because processing resources are directed toward the wrong input, reflecting control deficits.Previous findings indeed suggest attentional control deficits in PSZ.However, when control processes are not a limiting factor, stronger implementation of selective attention may result in a more intense and exclusive focus in PSZ.We hypothesized that PSZ would exhibit impaired selective attention when control demands were high, but hyperfocusing when control demands were low.Methods: Functional Magnetic Resonance Imaging (fMRI) was employed to study attentional gain within higher-order visual processing regions referred to as fusiform face area (FFA) and parahippocampal place area (PPA), which are specialized for face and spatial scene processing, respectively.Forty-three PSZ and 43 HCS underwent fMRI while responding to face and house stimuli.Stimulus-induced activation in FFA and PPA was analyzed as a function of whether participants were looking for a pre-defined target face or target house.To test the impact of attentional control demands on the attentional modulation of FFA and PPA BOLD activity, stimuli were presented either individually (Sequential condition), or concomitantly, as semitransparent face-house overlays that challenged attentional control (Overlay condition).Activation was studied in FFA and PPA regions of interest defined by an independent functional localizer on an individualsubject basis.Results: Coordinates of FFA ROIs did not differ between PSZ and HCS.PPA ROIs on average tended to be localized somewhat more posterior and inferior in PSZ than HCS.Importantly, the ROIs' sensory face-house discrimination did not differ between groups, for neither localizer nor task stimuli, which speaks against group differences in the basic functioning of these regions.Task responses were slower for house than for face stimuli in the Sequential conditions, and slower when prioritizing houses over faces in the Overlay condition, suggesting a difference in salience between stimulus dimensions.Target detection in PSZ was most impaired in the Overlay condition, and least (not at all) impaired when responding to face stimuli in the Sequential condition, following attentional control demands.BOLD activity reflected poorer attentional selectivity in PSZ than HCS when attentional control was challenged most, that is, when faces and houses were overlaid and the task required detecting the lower-salience house target.Specifically, HCS but not PSZ displayed larger PPA activation to overlay stimuli when the house dimension was attended than when the face dimension was attended [interaction of group x attention: F(1,81) = 4.12, P = 0.046].By contrast, attentional selectivity was exaggerated in PSZ when control was challenged least, that is, when stimuli were presented sequentially and the task required detecting the higher-salience face target.Specifically, PSZ but not HCS displayed larger FFA activation to face stimuli when the face dimension was attended than when the house dimension was addended [interaction of group x attention: F(1,81) = 4.54, P = 0.036].Time course analyses revealed that these effects were not due to group differences in the timing of the hemodynamic response.Thus, hyperactivation in PSZ did not reflect prolonged stimulus engagement.Conclusions: The findings are consistent with two distinct attentional abnormalities in schizophrenia leading to impaired and exaggerated selection under different conditions: attentional control deficits, and stronger implementation of selective attention, or hyperfocusing, once attention has been directed toward a stimulus.
Abstract This study pilot tested effectiveness of a care partner-assisted intervention on improving oral health among community-dwelling older adults with cognitive impairment. Twenty five participants (15 with mild cognitive impairment [MCI] and 10 with mild dementia) and their care partners were enrolled. Eighteen participants were randomly assigned to the treatment and 7 to the control group. The treatment group received educational materials, an electronic toothbrush, coaching on communication and goal setting, and individualized instruction on oral hygiene technique. The control group received educational materials and an electronic toothbrush. There were 3-data collection points: baseline, the end of the 3-month intervention, and 3-month after the intervention. The intervention improved participants’ oral hygiene (based on clinical measure of plaque index and gingival bleeding) for both groups; with more improvement in the treatment group. Improvement was greater for MCI than for mild dementia participants. This intervention showed promising results for a larger trial.
We pilot tested a carepartner-assisted intervention to improve oral hygiene in persons with cognitive impairment (participants) and help carepartners become leaders who can adapt approaches that foster participants’ ability to develop new skills for oral hygiene care. Following the intervention, we conducted interviews with participants and carepartners to understand their challenges in working together to learn new oral hygiene skills. Participants reported challenges such as frustration using the electric toothbrush correctly, lack of desire to change, uncertainty about correctness of technique, and difficulty sustaining two minutes of toothbrushing. Carepartners reported challenges such as learning a new way of toothbrushing, learning new communication techniques, switching from instructing to working together, learning to balance leading with being too bossy, and being mindful of word choices. Findings suggested that despite challenges, participants were able to learn adaptive strategies to support new oral hygiene behaviors with support of the carepartner as the adaptive leader.
Mobile health applications offer ecologically valid, data-rich methods of modeling daily symptoms and functioning, which could inform treatment delivery and facilitate early intervention in individuals with psychosis. To date, most studies evaluate adoption of technology independent of care providers. However, successful implementation and long-term adoption of mobile technology likely also requires integration into outpatient settings as an add-on tool to enhance treatment. We implemented a smartphone “app” plus clinician Dashboard as an add-on treatment tool in the UC Davis Early Psychosis (EP) Programs and tested feasibility, validity, and predictive utility of symptom tracking via the app as part of EP care. A subsequent pilot study examined barriers to implementation within two additional community outpatient settings in Northern California. Study 1 implemented the platform within the UC Davis EP Programs. For up to 14 months, EP clients completed daily and weekly surveys examining mood, symptoms, and treatment relevant factors via the app, as well as monthly in-person clinical assessments using the BPRS. Clinicians discussed symptom ratings and surveys during treatment sessions using the Dashboard. We examined client enrollment and survey completion to determine feasibility, and relationships between BPRS and weekly symptom ratings to evaluate validity of self-report symptom data collected via the app. Analysis of predictive utility determined if weekly self-report symptoms predicted symptom exacerbations 2 weeks later. Study 2 expanded recruitment to 2 additional community-based EP outpatient clinics. EP clients and their clinicians used the platform as part of care for 5 months and filled out satisfaction surveys at study-end regarding usability of the platform. Rate of survey completion in the absence of financial incentives was examined to determine real-world implementation of the platform. For study 1, 76 clients enrolled and remained in the study for an average of 183 days (SD=88). Survey completion rates remained high over the course of the study (weekly surveys: 77%; daily surveys: 69%) and were not significantly impacted by baseline symptom severity or length of time in the study. Weekly survey positive and depression/anxiety symptoms were significantly associated with BPRS positive (p<0.001) and BPRS depression/anxiety symptoms (p< 0.001) respectively. EP clients reported high satisfaction with the platform and endorsed continue use of the app if it was made available as part of their treatment. For Study 2, 61 EP clients and 20 clinicians enrolled; 41 EP clients and 20 clinicians participated for 5 months. The majority of EP clients (66%) and clinicians (85%) who completed satisfaction surveys reported a desire to continue to use the platform as part of care. Six (15%) clients and 3 providers (23%) stated that technological glitches impeded their use of the platform. These data support the validity and acceptability of implementing smartphone-based assessment of symptoms in community-based EP care. Specifically, results indicate that assessing positive and depression/anxiety symptoms using weekly self-report surveys via smartphone is comparable to gold-standard clinician-led assessments. This approach may be a valid method of monitoring fluctuations in positive and depression/anxiety symptoms in EP populations to anticipate symptom exacerbations. However, solutions to logistical barriers such as technical challenges and clinician engagement with technology are necessary for widespread adoption across EP care.
Background A growing body of literature indicates that smartphone technology is a feasible add-on tool in the treatment of individuals with early psychosis (EP) . However, most studies to date have been conducted independent of outpatient care or in a research clinic setting, often with financial incentives to maintain user adherence to the technology. Feasibility of dissemination and implementation of smartphone technology into community mental health centers (CMHCs) has yet to be tested, and whether young adults with EP will use this technology for long periods of time without incentive is unknown. Furthermore, although EP individuals willingly adopt smartphone technology as part of their treatment, it remains unclear whether providers are amenable to integrating smartphone technology into treatment protocols. Objective This study aimed to establish the feasibility of implementing a smartphone app and affiliated Web-based dashboard in 4 community outpatient EP clinics in Northern California. Methods EP individuals in 4 clinics downloaded an app on their smartphone and responded to daily surveys regarding mood and symptoms for up to 5 months. Treatment providers at the affiliated clinics viewed survey responses on a secure Web-based dashboard in sessions with their clients and between appointments. EP clients and treatment providers filled out satisfaction surveys at study end regarding usability of the app. Results Sixty-one EP clients and 20 treatment providers enrolled in the study for up to 5 months. Forty-one EP clients completed the study, and all treatment providers remained in the study for their duration in the clinic. Survey completion for all 61 EP clients was moderate: 40% and 39% for daily and weekly surveys, respectively. Completion rates were slightly higher in the participants who completed the study: 44% and 41% for daily and weekly surveys, respectively. Twenty-seven of 41 (66%) EP clients who completed the study and 11 of 13 (85%) treatment providers who responded to satisfaction surveys reported they would continue to use the app as part of treatment services. Six (15%; 6/41) clients and 3 providers (23%; 3/13) stated that technological glitches impeded their engagement with the platform. Conclusions EP clients and treatment providers in community-based outpatient clinics are responsive to integrating smartphone technology into treatment services. There were logistical and technical challenges associated with enrolling individuals in CMHCs. To be most effective, implementing smartphone technology in CMHC EP care necessitates adequate technical staff and support for utilization of the platform.
We developed a carepartner-assisted intervention aimed to improve oral health for individuals with mild dementia (IMD). Participants were recruited from a Memory Disorders Clinic and local caregiver support groups. Both IMD and carepartners were enrolled. Ten dyads were randomly assigned to a control or treatment group. We used the Adaptive Leadership Framework to guide this intervention, which included 4 coaching modules over 3 months of the active portion of the intervention, two delivered in-person and two by telephone. Dyads in the treatment group received educational materials, coaching on communication and goal setting, and individualized instruction on oral hygiene technique and hygiene monitoring. Dyads in the control group received educational materials only. All participants received three in-home oral evaluations over 6-months. We evaluated changes in oral hygiene using quantitative methods and collected qualitative data of self-described benefits during interviews. The results show that IMD had a better improvement of oral health status (measured by gingival index and plaque index). The participants also provided positive feedback toward the intervention.
Smartphone applications that promote symptom tracking and self-management may improve treatment of serious mental illness (SMI). Although feasibility has been established in chronic adult outpatient or inpatient SMI samples, no data exist regarding implementation of smartphone technology in adolescent and young adult populations as part of early psychosis (EP) outpatient care. We implemented a smartphone "app" plus clinician Dashboard as an add-on treatment tool in the University of California, Davis Early Psychosis Program. Participants completed daily and weekly surveys examining mood, symptoms, and treatment relevant factors via the app for up to 14 months. Clinicians discussed symptom ratings and surveys during regular treatment sessions using the Dashboard. We report methodological details of the study, feasibility metrics, and analyses of the validity of measuring symptoms via self-report using mobile health (mHealth) technology in comparison to gold standard clinician-rated interviews based on a comprehensive longitudinal analysis of within-person data. Results demonstrate that integrating mHealth technology into EP care is feasible and self-report assessment of symptoms via smartphone provides symptom data comparable to that obtained via gold-standard clinician-rated assessments.