The impact of fibrodysplasia ossificans progressiva (FOP) on patients and their family members: results from an international burden of illness survey.

BACKGROUND: Fibrodysplasia ossificans progressiva (FOP) is an ultra-rare, genetic disorder of heterotopic ossification within soft, connective tissues resulting in limited joint function and severe disability. We present results from an international burden of illness survey (NCT04665323) assessing physical, quality of life (QoL), and economic impacts of FOP on patients and family members. METHODS: Patient associations in 15 countries invited their members to participate; individuals with FOP and their family members were eligible. The survey was available online, in 11 languages, from 18 January-30 April 2021. Participants responded to assessments measuring joint function, QoL, healthcare service and living adaptation utilization, out-of-pocket costs, employment, and travel. RESULTS: The survey received 463 responses (patients, n = 219; family members, n = 244). For patients, decreased joint function was associated with reduced QoL and greater reliance on living adaptations. Nearly half of primary caregivers experienced a mild to moderate impact on their health/psychological wellbeing. Most primary caregivers and patients (≥18 years) reported that FOP impacted their career decisions. CONCLUSIONS: Data from this survey will improve understanding of the impact of FOP on patients and family members, which is important for identifying unmet needs, optimizing care, and improving support for the FOP community.

System-Level Influences on the Sustainability of a Cognitive Therapy Program in a Community Behavioral Health Network.

OBJECTIVE: The purpose of this study was to examine influences on the sustainability of a program to implement an evidence-based psychotherapy in a mental health system. METHODS: Interviews with program administrators, training consultants, agency administrators, and supervisors (N=24), along with summaries of program evaluation data and program documentation, were analyzed with a directed content-analytic approach. RESULTS: Findings suggested a number of interconnected and interacting influences on sustainability, including alignment with emerging sociopolitical influences and system and organizational priorities; program-level adaptation and evolution; intervention flexibility; strong communication, collaboration, planning, and support; and perceived benefit. These individual factors appeared to mutually influence one another and contribute to the degree of program sustainability achieved at the system level. Although most influences were positive, financial planning and support emerged as potentially both facilitator and barrier, and evaluation of benefits at the patient level remained a challenge. CONCLUSIONS: Several factors appeared to contribute to the sustainability of a psychosocial intervention in a large urban mental health system and warrant further investigation. Understanding interconnections between multiple individual facilitators and barriers appears critical to advancing understanding of sustainability in dynamic systems and adds to emerging recommendations for other implementation efforts. In particular, implications of the findings include the importance of implementation strategies, such as long-term planning, coalition building, clarifying roles and expectations, planned adaptation, evaluation, diversification of financing strategies, and incentivizing implementation.

Community mental health provider modifications to cognitive therapy: implications for sustainability.

OBJECTIVE: This study identified modifications to an evidence-based psychosocial treatment (cognitive therapy) within a community mental health system after clinicians had received intensive training and consultation. METHODS: A coding system, consisting of four types of contextual modifications, 12 types of content-related modifications, seven levels at which modifications can occur, and a code for changes to training or evaluation processes, was applied to data from interviews with 27 clinicians who treat adult consumers within a mental health system. RESULTS: Nine of 12 content modifications were endorsed, and four (tailoring, integration into other therapeutic approaches, loosening structure, and drift) accounted for 65% of all modifications identified. Contextual modifications were rarely endorsed by clinicians in this sample. Modifications typically occurred at the client or clinician level. CONCLUSIONS: Clinicians in community mental health settings made several modifications to an evidence-based practice (EBP), often in an effort to improve the fit of the intervention to the client's needs or to the clinician's therapeutic style. These findings have implications for implementation and sustainability of EBPs in community settings, client-level outcomes, and training and consultation.

Development of a framework and coding system for modifications and adaptations of evidence-based interventions.

BACKGROUND: Evidence-based interventions are frequently modified or adapted during the implementation process. Changes may be made to protocols to meet the needs of the target population or address differences between the context in which the intervention was originally designed and the one into which it is implemented [Addict Behav 2011, 36(6):630-635]. However, whether modification compromises or enhances the desired benefits of the intervention is not well understood. A challenge to understanding the impact of specific types of modifications is a lack of attention to characterizing the different types of changes that may occur. A system for classifying the types of modifications that are made when interventions and programs are implemented can facilitate efforts to understand the nature of modifications that are made in particular contexts as well as the impact of these modifications on outcomes of interest. METHODS: We developed a system for classifying modifications made to interventions and programs across a variety of fields and settings. We then coded 258 modifications identified in 32 published articles that described interventions implemented in routine care or community settings. RESULTS: We identified modifications made to the content of interventions, as well as to the context in which interventions are delivered. We identified 12 different types of content modifications, and our coding scheme also included ratings for the level at which these modifications were made (ranging from the individual patient level up to a hospital network or community). We identified five types of contextual modifications (changes to the format, setting, or patient population that do not in and of themselves alter the actual content of the intervention). We also developed codes to indicate who made the modifications and identified a smaller subset of modifications made to the ways that training or evaluations occur when evidence-based interventions are implemented. Rater agreement analyses indicated that the coding scheme can be used to reliably classify modifications described in research articles without overly burdensome training. CONCLUSIONS: This coding system can complement research on fidelity and may advance research with the goal of understanding the impact of modifications made when evidence-based interventions are implemented. Such findings can further inform efforts to implement such interventions while preserving desired levels of program or intervention effectiveness.

Clinicians' perspectives on cognitive therapy in community mental health settings: implications for training and implementation.

Policymakers are investing significant resources in large-scale training and implementation programs for evidence-based psychological treatments (EBPTs) in public mental health systems. However, relatively little research has been conducted to understand factors that may influence the success of efforts to implement EBPTs for adult consumers of mental health services. In a formative investigation during the development of a program to implement cognitive therapy (CT) in a community mental health system, we surveyed and interviewed clinicians and clinical administrators to identify potential influences on CT implementation within their agencies. Four primary themes were identified. Two related to attitudes towards CT: (1) ability to address client needs and issues that are perceived as most central to their presenting problems, and (2) reluctance to fully implement CT. Two themes were relevant to context: (1) agency-level barriers, specifically workload and productivity concerns and reactions to change, and (2) agency-level facilitators, specifically, treatment planning requirements and openness to training. These findings provide information that can be used to develop strategies to facilitate the implementation of CT interventions for clients being treated in public-sector settings.

Perspectives on Cognitive Therapy Training within Community Mental Health Settings: Implications for Clinician Satisfaction and Skill Development.

Despite the mounting evidence of the benefits of cognitive therapy for depression and suicidal behaviors over usual care, like other evidence-based psychosocial treatments (EBTs), it has not been widely adopted in clinical practice. Studies have shown that training followed by intensive consultation is needed to prepare providers to an appropriate level of competency in complex, multisession treatment packages such as cognitive therapy. Given the critical role of training in EBT implementation, more information on factors associated with the success and challenges of training programs is needed. To identify potential reasons for variation in training outcomes across ten agencies in a large, urban community mental health system, we explored program evaluation data and examined provider, consultant, and training program administrator perspectives through follow-up interviews. Perceptions of cognitive therapy, contextual factors, and reactions to feedback on audio recordings emerged as broad categories of themes identified from interviews. These factors may interact and impact clinician efforts to learn cognitive therapy and deliver it skillfully in their practice. The findings highlight experiences and stakeholder perspectives that may contribute to more or less successful training outcomes.

New psychotherapies for mood and anxiety disorders.

OBJECTIVE: To discuss psychotherapies for depression and anxiety that have emerged in recent years and to evaluate their current level of empirical support. METHOD: An electronic and a manual literature search of psychotherapies for mood and anxiety disorders were conducted. RESULTS: Five new therapies for mood disorders and 3 interventions for posttraumatic stress disorder with co-occurring substance abuse met criteria for inclusion in this review. Fewer psychotherapies have been developed for other anxiety disorders. Although research for some of the psychotherapies has demonstrated superiority to usual care, none have firmly established efficacy or specific benefits over other established psychotherapies. CONCLUSIONS: A plurality of the new psychotherapies introduced and established in the past 5 years have been different assimilations of previously established cognitive-behavioural, interpersonal, or psychodynamic models. While initial results are promising for some, more rigorous efficacy trials and replications are necessary before conclusions can be drawn regarding their relative benefits.