Framework Of Outcome Measures Research Articles

Person-Centered Stories on the Main Stage in Intervention: Case Examples From the My Story Project, Aphasia! This Is Our World, and Aphasia-Friendly Reading

Purpose: Researchers working in the Life Participation Approach to Aphasia (LPAA) framework are beginning to recognize the value of supportive co-constructed storytelling for people with aphasia. Supported storytelling facilitates identity reconstruction that is part of rehabilitation as defined in the LPAA and the Living with Aphasia: Framework for Outcome Measurement. This clinical focus article reviews the therapeutic value of using co-constructed storytelling in clinical practice and describes how this was done in the My Story Project, Aphasia! This Is Our World, and Aphasia-Friendly Reading. These projects used co-constructed storytelling in intervention with people with aphasia in university and support group settings. Three case examples are presented, including sample therapy goals and documentation. Co-constructed person-centered storytelling has been used in clinical projects and has been shown to have immense value in rehabilitation for improving quality of life for people with aphasia. Conclusions: Co-constructed stories can provide a powerful opportunity for targeting life participation, identity, and environmental factors, while simultaneously targeting language. Clinicians are encouraged to consider incorporating the use of co-constructed person-centered storytelling in clinical practice. Guidance is offered for preparing for storytelling intervention sessions and documenting these sessions as billable, skilled services.

Putting Outcomes into Practice: The Implementation of a Framework of Outcome Measures within a Child and Family Service

Abstract Of utmost concern for effective child protection and child and family services is evidence-based practice. There is an onus of accountability on providers of therapeutic services to establish the merit and cost efficiency of their work. Developing standardised evidence-based outcome measures for children and families, towards which the service provider can strive, is assuredly required as a yardstick against which progress can be measured and modified. Yet, outcome measures will only work in conducive organisational conditions. Specifically, to operationalise a suite of outcome measures into a complex organisation, from administrative policy to grassroots practice, requires understanding of barriers and facilitators of implementation. Through funded research, we investigate these factors within the implementation of a new outcomes framework in a European child and family service. Following a literature review exercise, qualitative research findings from two focus groups targeted, respectively, at the managerial and front line practitioner level, illuminate complex conditions and underlying mechanisms, as well as attitudinal, resource and knowledge factors upon which implementation is predicated. We conclude with recommendations around establishing sustainable conditions and arrangements in organisations, to ensure outcome measures act as effective instruments, rather than costly and dispensable paper exercises.

The utility of elective flexible bronchoscopy to improve quality of life and clinical outcomes for children: A systematic review.

Elective flexible bronchoscopy (FB) is now widely available and standard practice for a variety of indications in children with respiratory conditions. However, there is limited evidence regarding the utility of elective FB in children. This systematic review (SRs) aimed to determine the utility of FB on its impact in clinical decision making and quality of life (QoL). We searched Pubmed, Cochrane central register of controlled trials, Embase, World Health Organization Clinical Trials Registry Platform and Cochrane database of SRs from inception to April 20, 2023. We included SRs and randomized controlled trials (RCTs) that used parallel group design (comparing use of elective FB vs. no FB, or a wait-list approach [early FB vs. usual wait FB]) in children aged ≤ 18 years. Our protocol was prospectively registered and used Cochrane methodology for systemic reviews of interventions. Our search identified 859 articles; 102 duplicates were removed, and 753 articles were excluded by title and abstract. Four full text articles were reviewed and subsequently excluded, as none met the inclusion criteria outlined in our patient, intervention, comparator, outcome measures framework. There is a paucity of high-quality RCT evidence to support the routine use of elective FB in children with respiratory conditions. However, available retrospective and a single prospective study demonstrate the high utility of FB in the elective pediatric setting. PROSPERO CRD42021291305.

Applying the RE-AIM framework to evaluate an educational model to “close the gap” and improve health equity in uncontrolled hypertension

ObjectivesTo use the Reach, Effectiveness, Adoption, Implementation, Maintenance (RE-AIM) framework to evaluate an educational model addressing self-management of uncontrolled hypertension. MethodsWe used a pre-post single cohort design to identify minoritized patients with uncontrolled hypertension (systolic > 160 mmHg and/or diastolic > 100 mmHg). Trained Ambassadors provided telephone outreach, skill-based blood pressure (BP) monitoring, and goal-setting for 4 months. Follow-up occurred at 7 months. We evaluated the initiative using the RE-AIM framework and quantitative analysis for process and outcome measures post-intervention. ResultsAmong Black patients (n = 345), the average age was 55.4 years (8.7), half identified as male (n = 173, 50.1 %); many were uninsured (n = 159, 46.1 %). Engagement in calls occurred for 67.8 % (n = 234) of the cohort; monitor distribution was 22.9 % (n = 79); and goal setting occurred for 64 patients. BP improved for 40 % of the cohort (mean pre: 168/98 mmHg, mean post: 150/89 mmHg; p < 0.0001) and 40 % of patients’ last known BP was < 140/90. ConclusionsRE-AIM evaluation of the Closing the Gap initiative suggests that the model is associated with BP reduction in high-risk Black patients. Practice ImplicationsAn educational model for patient-centered hypertension management in low-income populations is feasible and addresses self-monitoring barriers.

Preliminary Findings from a Collaborative Storytelling Program on Life Participation and Communication among Persons with Aphasia

ABSTRACT Aims The purpose of this study is to evaluate the outcomes of a remotely delivered collaborative storytelling program based on the TimeslipsTM approach in persons with aphasia (PWA). The program aims to improve social interaction, communication, and participation through a guided experience. Methods Six PWA of mild-moderate severity and of fluent and nonfluent types participated in the program twice a week for seven weeks. They collaboratively created 28 free-form stories from staged pictures. PWA were tested pre- and post-treatment on several validated outcome measures representing each of the Living with Aphasia: Framework for Outcome Measurement (A-FROM) domains. PWA self-rated on group therapeutic factors and program satisfaction scales. To assess the benefits of the program, the results were analysed for clinical significance (reliable change index) and meaningfulness for each of the outcome measures. Results Comparison between pre- and post-test scores yielded clinical significance among all participants on at least one A-FROM domain and most participants improved on communication confidence, functional communication, and overall language abilities. All participants’ ratings of perceived group therapeutic factors and satisfaction with the program were high. Conclusions The findings provide preliminary evidence for the effectiveness of a collaborative storytelling program for PWA. Such a program may have an important place in aphasia rehabilitation in improving psychosocial and communication deficits through engagement in creative arts. Large-scale studies with rigorous mixed-methods designs are needed to build on the present findings.

Conceptual Framework for Patient-Reported Outcome Measures in Clinical Trials of Skeletal Muscle Cramping Experienced in Dialysis: A Kidney Health Initiative Workgroup Report.

Skeletal muscle cramping is a common and bothersome symptom for patients on maintenance dialysis therapy, regardless of modality, and it has not been prioritized for innovative assessments or treatments. Research to prevent or treat skeletal muscle cramping in patients receiving dialysis is hindered by poorly understood pathophysiology, lack of an accepted definition, and the absence of a standardized measurement method. The Kidney Health Initiative, a public-private partnership between the American Society of Nephrology and US Food and Drug Administration, convened a multidisciplinary workgroup to define a set of patient-reported outcome measures for use in clinical trials to test the effect of new dialysis devices, new KRTs, lifestyle/behavioral modifications, and medications on skeletal muscle cramping. Upon determining that foundational work was necessary, the workgroup undertook a multistep process to elicit concepts central to developing the basis for demonstrating content validity of candidate patient-reported outcome measures for skeletal muscle cramping in patients on dialysis. The workgroup sought to (1) create an accepted, patient-endorsed definition for skeletal muscle cramping that applies to all dialysis modalities, (2) construct a conceptual model for developing and evaluating a skeletal muscle cramping-specific patient-reported outcome measure, and (3) identify potential questions from existing patient-reported outcome measures that could be modified or adapted and subsequently tested in the dialysis population. We report the results of the workgroup's efforts, provide our recommendations, and issue a call to action to address the gaps in knowledge and research needs we identified. These action steps are urgently needed to quantify skeletal muscle cramping burden, assess the effect, and measure meaningful changes of new interventions to improve the experience of patients receiving dialysis and suffering from skeletal muscle cramping.

Health, well-being and quality of life in aged care: Validation of theoretical domains to inform a person-centred outcomes measurement framework.

The constructs of health, well-being and quality of life are not routinely understood or measured for people accessing aged care services. This study aimed to identify and validate theoretical domains of health, well-being and quality of life for recipients of care, their informal carers and staff, and inform the development of a person-centred outcomes measurement framework. First, a rapid review to identify recurrent domains of health, well-being and quality-of-life in aged care, using systematic searches of electronic databases, and review of grey literature, following the PRISMA guidelines. Second, establish content validity of identified domains using (a) Delphi technique with n=134 aged care staff, care recipients and caregivers, and (b) comparability with categories within the International Classification of Functioning, Disability and Health (ICF) and ICF Geriatric Core Set. From 972 records detected in the rapid review, 19 peer-reviewed research articles and 27 grey literature sources were included in the content analysis. Twenty-four domains and 109 concepts were identified, and health, quality of life, security and food and nutrition were ranked as the most important. One domain, cognition, linked to both the Geriatric Core Set and ICF, and 37% of domains and 39% of concepts were evident within the ICF. This study identified and validated 24 important domains of health, well-being and quality of life for the older person receiving care, their informal carers and staff. These domains can be used to guide the selection of outcome measures and facilitate person-centred care and care planning.

QIP: Liaison Psychiatry Outcome Measures at University College Hospital in London

AimsThe purpose of this quality improvement project was to improve the collection of outcomes in the Liaison Psychiatry (LP) department at the University College Hospital in London (UCLH). To achieve this, the Framework for Routine Outcome Measurement in Liaison Psychiatry (FROM-LP) was used to gather data and evidence on clinical and other patient-related outcomes provided by the department. The FROM-LP was created to provide a consistent way to compare the quality and performance of Liaison Psychiatry services across the NHS. It was developed in 2015 and is based on the most widely used measurement frameworks for assessing quality and performance of services.MethodsThis project implemented the FROM-LP, using the Identify and Rate the Aim of the Contact (IRAC) tool and the Clinical Global Impression – Improvement scale (CGI-I) from September to November 2021 in the UCLH Liaison Psychiatry department. The PDSA (plan, do, study, and act) cycle was used to carry out this quality improvement project and the data were collected by two foundation year doctors.The IRAC scale identified ten categories for the aim of contact by LP and a rating on whether the aim was fully achieved, partially achieved, or not achieved after patient contact. The CGI-I scale was used to rate whether a patient had improved upon discharge by LP. Data were also collected on the demographics of patients, the specialty teams that referred to LP, whether legal frameworks were used, and where patients were discharged to.ResultsThis project improved the collection of outcome data in the department from 0% to 98.16%, indicating an improvement of outcomes measurement by &gt;98%. Other outcomes collected showed that patients were predominantly 21–30 years of age and referred to community mental health teams when discharged. The IRAC tool showed most patients were referred for assessment and diagnosis, with the majority of these aims marked as ‘fully achieved’. The CGI-I tool showed most patients were ‘much improved’ upon discharge.ConclusionThe collection of these outcomes led to the creation of an outcomes measure form on the primary electronic software system (Carenotes) utilized by the department and local trust. This electronic form is now currently being used by the Liaison Psychiatry department at UCLH for their patients and makes this improvement sustainable while providing an easier means to continue collecting data. Ultimately, the collection of these outcomes will guide future changes and improvements for both the liaison psychiatry department and its patients.

Evaluating the Revised Work Rehabilitation Questionnaire in Cochlear Implant Users Cochlear Implant Outcome Assessment Based on the International Classification of Functioning, Disability, and Health (ICF).

The 59-item Work Rehabilitation Questionnaire (WORQ) was developed based on the International Classification of Functioning, Disability and Health (ICF) core set for vocational rehabilitation to assess work related functioning. It was revised to include 17 questions, assigned to 14 ICF categories relevant to cochlear implant (CI) users. This cross-sectional multicenter study aimed to evaluate CI users' responses on the WORQ questions to describe and generate ICF qualifiers for the revised WORQ in CI users, forming part of a broader framework of CI outcome measures linked to the ICF. One hundred seventy-seven adults over the age of 18 years with a minimum of one year's device experience were included in the analysis. The WORQ was completed by the participants at a routine visit to the clinic, via email, or via post. Most of the CI users perceived no problem on the WORQ questions (53.7%-91%), finished secondary school (54.2%) or obtained a college or university degree (32.8%) and are either employed (41.2%) or retired (34.5%). CI users that are currently working mostly have a full-time position (34.5%). Subjects reported no problem (91%) with sensation of falling, while handling communication devices and techniques (10.9%) and tinnitus (9.6%) showed the highest number of subjects reporting a complete problem. Overall, most of the CI users experienced no impairment, restriction or limitation on the WORQ questions and their assigned ICF categories. Their education level resembles the education level of the general population and they seem to integrate or reintegrate well in professional life postoperatively.

Optimising partner notification outcomes for bacterial sexually transmitted infections: a deliberative process and consensus, United Kingdom, 2019.

Partner notification (PN) is an essential element of sexually transmitted infection (STI) control. It enables identification, treatment and advice for sexual contacts who may benefit from additional preventive interventions such as HIV pre- and post-exposure prophylaxis. PN is most effective in reducing STI transmission when it reaches individuals who are most likely to have an STI and to engage in sexual behaviour that facilitates STI transmission, including having multiple and/or new sex partners. Outcomes of PN practice need to be measurable in order to inform standards. They need to address all five stages in the cascade of care: elicitation of partners, establishing contactable partners, notification, testing and treatment. In the United Kingdom, established outcome measures cover only the first three stages and do not take into account the type of sexual partnership. We report an evidence-based process to develop new PN outcomes and inform standards of care. We undertook a systematic literature review, evaluation of published information on types of sexual partnership and a modified Delphi process to reach consensus. We propose six new PN outcome measures at five stages of the cascade, including stratification by sex partnership type. Our framework for PN outcome measurement has potential to contribute in other domains, including Covid-19 contact tracing.

Using an Implementation Framework to Survey Outcome Measurement and Treatment Practices in Aphasia.

Best practices in the field of aphasia rehabilitation increasingly acknowledge a whole-person approach that values interventions aimed at reducing impairments, while also recognizing the impact of aphasia on participation and quality of life. Guided by the Consolidated Framework for Implementation Research (CFIR), this study aimed to examine whether current clinical practices along levels of service provision reflect this whole-person, multifaceted approach. Speech-language pathologists (SLPs) in the United States who provide intervention to people with aphasia across the continuum of care completed this cross-sectional online survey. Current outcome measurement and treatment practices were evaluated within the Living With Aphasia: Framework for Outcome Measurement via multiple-choice and open-text response questions. Data were analyzed descriptively and using ordinal logistic regression models to compare clinical practices along levels of service provision. Data from 90 SLPs revealed that language and cognitive skills are assessed with equal consistency across clinical settings; however, functional communication, participation, and quality of life domains are prioritized in settings providing care to clients within the community. Psychological well-being is rarely assessed within clinical practice along most of the rehabilitation process and prioritized within the university clinic setting when clients are in the chronic stage of recovery. Clinical practices related to a multifaceted approach to aphasia intervention are variable across levels of service provision. Further exploration of barriers and facilitators to multifaceted aphasia care along the domains of the CFIR is needed to provide an informed approach to implementing change.

Harmonized Outcome Measures for Use in Non-Small Cell Lung Cancer Patient Registries and Clinical Practice.

Lung cancer is the leading cause of cancer-related death in the United States and globally, and many questions exist about treatment options. Harmonizing data across registries and other data collection efforts would yield a robust data infrastructure to help address many research questions. The purpose of this project was to develop a minimum set of patient and clinician relevant harmonized outcome measures that can be collected in non-small cell lung cancer (NSCLC) patient registries and clinical practice. Seventeen lung cancer registries and related efforts were identified and invited to submit outcome measures. Representatives from medical specialty societies, government agencies, health systems, health information technology groups, patient advocacy organizations, and industry formed a stakeholder panel to categorize the measures and harmonize definitions using the Agency for Healthcare Research and Quality's supported Outcome Measures Framework (OMF). The panel reviewed 66 outcome measures and identified a minimum set of 8 broadly relevant measures in the OMF categories of patient survival, clinical response, events of interest, and resource utilization. The panel harmonized definitions for the 8 measures through in-person and virtual meetings. The panel did not reach consensus on 1 specific validated instrument for capturing patient-reported outcomes. The minimum set of harmonized outcome measures is broadly relevant to clinicians and patients and feasible to capture across NSCLC disease stages and treatment pathways. A pilot test of these measures would be useful to document the burden and value of the measures for research and in clinical practice. By collecting the harmonized measures consistently, registries and other data collection systems could contribute to the development research infrastructure and learning health systems to support new research and improve patient outcomes.

#3108 Initial assessment structure in a specialist outpatient clinic for acquired brain injury in adults

Consistent with the NHS quality agenda, Dept. of Health, 20111 there has been a drive to routinely incorporate outcome and performance measurement data in clinical practice. An absolute requirement within NHS services2 are Patient-Rated Outcome Measures (PROMS) which are used by some Royal College of Psychiatry faculties to quantify outcomes, improve accountability, performance management and service. They can also be used to screen for common health problems and ensure the comprehensive assessment of complex Acquired Brain Injury (ABI) Patients who typically present with various neurological and psychiatric comorbidities.The North Bristol NHS Trust Outpatient Clinic at The Frenchay Brain Injury Rehabilitation Centre and The Rosa Burden, Southmead Hospital, conducts new assessments and regular patient reviews for referrals from South West England. As part of a quality improvement initiative a semi-structured process of assessment was trialled, to improve patient experience by providing a comprehensive initial assessment, improving treatment productivity and reducing over-running clinics.MethodReferrals were audited and common reasons for referrals identified. Questionnaires and tools used in the clinic were reviewed and those most frequently used were compiled. The evidence for questionnaires utilized for different psychiatric comorbidities and applicability in ABI was examined in the literature. The finalized patient questionnaires booklet section and their sequence was decided based on expert peer recommendations and patient feedback. The collateral section was similarly developed with some questionnaires modified for operational reasons.SECTION ONE: SELF RATED PRE-ASSESSMENT QUESTIONNAIRERivermead Post Concussion Symptoms Questionnaire, Patient Health Questionnaire (15): Somatic Screen, Patient Health Questionnaire-9: Depression screen, General Anxiety Disorder 7: Anxiety screen, Mood Disorder Questionnaire: Bipolar Affective Disorder screen and the Civilian Version PTSD Checklist.SECTION TWO: CARER/FAMILY PRE-ASSESSMENT QUESTIONNAIREModified Overt Aggression Scalescreen for aggression, Neuropsychiatry Inventory Questionnaire: assesses psychiatric symptoms in patients with neurological disordersOutcomeThe final booklet was divided into three sections:Patient-Rated, ObserverRated and Clinician Section. Consultation efficiency was improved with the Patient and Observer rated sections completed prior to the initial assessment. The checklist is used for all initial assessments with good uptake and allowed for standardization of clinical information gathering. PROMs for mood are collected at each clinic appointment with other domains repeated if abnormal at initial clinic assessment or clinically relevant.References Fossey M, Parsonage M. Outcomes and performance in liaison psychiatry: developing a measurement framework. Centre for Mental Health and Royal College of Psychiatrists Report June 2014. Trigwell P, Kustow J, Santhouse A, et al. Framework for routine outcome measurement in liaison psychiatry (FROM-LP): faculty of liaison psychiatry royal college of psychiatrists faculty report. The Royal College of Psychiatrists 2015. vretveit J, Zubkoff L, Nelson EC, et al. Using patient-reported outcome measurement to improve patient care. Int J Qual Health Care 2017 Oct 1;29(6):874879.

Harmonized outcome measures for use in degenerative lumbar spondylolisthesis patient registries and clinical practice.

The development of new treatment approaches for degenerative lumbar spondylolisthesis (DLS) has introduced many questions about comparative effectiveness and long-term outcomes. Patient registries collect robust, longitudinal data that could be combined or aggregated to form a national and potentially international research data infrastructure to address these and other research questions. However, linking data across registries is challenging because registries typically define and capture different outcome measures. Variation in outcome measures occurs in clinical practice and other types of research studies as well, limiting the utility of existing data sources for addressing new research questions. The purpose of this project was to develop a minimum set of patient- and clinician-relevant standardized outcome measures that are feasible for collection in DLS registries and clinical practice. Nineteen DLS registries, observational studies, and quality improvement efforts were invited to participate and submit outcome measures. A stakeholder panel was organized that included representatives from medical specialty societies, health systems, government agencies, payers, industries, health information technology organizations, and patient advocacy groups. The panel categorized the measures using the Agency for Healthcare Research and Quality's Outcome Measures Framework (OMF), identified a minimum set of outcome measures, and developed standardized definitions through a consensus-based process. The panel identified and harmonized 57 outcome measures into a minimum set of 10 core outcome measure areas and 6 supplemental outcome measure areas. The measures are organized into the OMF categories of survival, clinical response, events of interest, patient-reported outcomes, and resource utilization. This effort identified a minimum set of standardized measures that are relevant to patients and clinicians and appropriate for use in DLS registries, other research efforts, and clinical practice. Collection of these measures across registries and clinical practice is an important step for building research data infrastructure, creating learning healthcare systems, and improving patient management and outcomes in DLS.

ELPS helps!

AimsThis study aimed to identify whether contact with the Ealing Liaison Psychiatry Service (ELPS) improved patients’ mental health using the Clinical Global Impressions (CGI) scale, and to understand the utility of this tool.BackgroundCGI is a frequently used outcome measure in psychiatry and also forms part of the RCPsych Framework for Outcome Measures in Liaison Psychiatry (FROM-LP) across the NHS's LP Services. However, there is minimal literature discussing the meaning of the quantitative results of the questionnaire. What would be a cut-off point associated with the provision of good care? It is not possible to draw conclusions about the quality of service and care based on the proportion of the patients who report an improvement on CGI in the absence of a gold standard.MethodPatients and their ELPS clinicians filled out a CGI questionnaire, rating the patient's mental health condition after contact with the clinician. The 1-7 rated CGI scale indicated the following: 1-3 signified varying degrees of improvement, 4 signified no change and 5-7 signified varying degrees of feeling worse. This study looked at all 205 patients with completed CGI questionnaires who had more than one face-to-face contact with a clinician in 2018 and 2019.Patient and clinician ratings were compared for concordance and patient notes were reviewed to identify potential reasons for patients with low CGI scores.Randomised sampling of patients who scored 1 ‘Very much improved’, 2 ‘Much improved’ and 3 ‘Minimally improved’ was conducted to identify differences in number of face-to-face contacts between the groups.Result59% of patients reported an improvement, 40% felt that there was no change and 1% (3 patients) indicated feeling worse. Of the latter, 2 patients had been admitted to a mental health unit.91% of cases showed concordance between patient and clinician ratings.Randomised sampling identified 9 patients scoring ‘1’, 22 patients scoring ‘2’ and 16 patients scoring ‘3’. The vast majority of patients had only two contacts with ELPS (77%).ConclusionELPS intervention improves patients’ self-reported wellbeing in 59% of patients according to CGI.There was no correlation between number of face-to-face contacts and the degree to which patients felt better. However, in the absence of a nationally-recognised gold standard, it is not possible to draw conclusions about whether care provided by ELPS is good compared to other services. Data from other centres are required to elucidate what constitutes a gold standard to aspire towards.

Couple- or family-oriented interventions and outcomes for preventing mental health problems and promoting mental health: a scoping review protocol.

The objective of this scoping review is to map the literature describing couple- and family-oriented interventions and outcomes to prevent mental health problems and promote mental health. Literature involving couple- and family-focused mental health interventions has gained increased attention over the past two decades, yet little is known about the efficacy of these interventions for promoting mental health and preventing mental disorders. Despite recognition that the most sustainable method for reducing the increasing burden of mental disorders is primary prevention, there has been no systematic investigation of relevant couple- and family-focused interventions. This scoping review will consider studies that include couples or multiple family members who have participated in couple- and family-focused interventions aimed at primary prevention of mental disorders and promotion of mental health. This study will include experimental, quasi-experimental, and observational study designs, as well as qualitative studies. Conference abstracts, posters, editorials, commentaries, and opinion papers will be excluded. Multiple databases will be searched, including PubMed (MEDLINE), CINAHL, ERIC, PsycINFO (via EBSCO), Web of Science, Scopus, and Research Information Sharing Service (RISS). Trial registers and gray literature will also be searched. Two independent reviewers will screen the abstract/title of retrieved citations using inclusion and exclusion criteria. After screening titles and abstracts of identified citations, relevant studies will be retrieved in full. Using a data extraction instrument developed specifically for this review, eligible studies will be extracted and presented in diagrammatic or tabular form, accompanied by a narrative summary.

Harmonized Outcome Measures for Use in Depression Patient Registries and Clinical Practice.

Major depressive disorder is a common mental health condition that affects an estimated 16.2 million adults and 3.1 million adolescents in the United States. Yet, a lack of uniformity remains in measurements and monitoring for depression both in clinical practice and in research settings. This project aimed to develop a minimum set of standardized outcome measures relevant to both patients and clinicians that can be collected in depression registries and clinical practice. Twenty-nine depression registries and related data collection efforts were identified and invited to submit outcome measures. Additional measures were identified through literature searches and reviews of quality measures. A multistakeholder panel representing clinicians; payers; government agencies; industry; and medical specialty, health care quality, and patient advocacy organizations categorized the 27 identified measures using the Agency for Healthcare Research and Quality's supported Outcome Measures Framework. The panel identified 10 broadly relevant measures and harmonized definitions for these measures through in-person and virtual meetings. The harmonized measures represent a minimum set of outcomes that are relevant to clinicians and patients and appropriate for use in depression research and clinical practice. Routine and consistent collection of these measures in registries and other systems would support creation of a national research infrastructure to efficiently address new questions, improve patient management and outcomes, and facilitate care coordination.

The Power of Story in Identity Renegotiation: Clinical Approaches to Supporting Persons Living With Aphasia

PurposeThis clinical focus article provides an overview of the relationship between narrative, identity, and social co-construction for persons with aphasia and of narrative treatment approaches targeting identity renegotiation. The intent is to provide speech-language pathologists (SLPs) with background on how these key concepts fit within the Life Participation Approach to Aphasia and to empower them to consider engaging in personal narrative co-construction with their clients. The idea of narrative identity is supported by the Living with Aphasia: Framework for Outcome Measurement, particularly within the Personal domain. A focus on identity through the co-construction of small and big stories can help SLPs prioritize supporting those living with aphasia in moving on with aphasia as part of their story. Emphasis is placed upon the interaction and relationship between the SLP and the client as critical to the social reconstruction and validation of identity through support of shared personal narratives. The PULSE framework is introduced as a foundation for supporting narrative and identity in clinical work with individuals living with aphasia. Evidence-based life story–focused interventions are reviewed.ConclusionStories are powerful tools in moving life forward post stroke and aphasia. Supporting the development of personal narratives that allow identity reconstruction falls within the scope of Life Participation Approach to Aphasia and the Living with Aphasia: Framework for Outcome Measurement. SLPs are well suited to support identity renegotiation in persons with aphasia through narrative construction.

Harmonized outcome measures for use in asthma patient registries and clinical practice

Asthma, a common chronic airway disorder, affects an estimated 25 million persons in the United States and 330 million persons worldwide. Although many asthma patient registries exist, the ability to link and compare data across registries is hindered by a lack of harmonization in the outcome measures collected by each registry. The purpose of this project was to develop a minimum set of patient- and provider-relevant standardized outcome measures that could be collected in asthma patient registries and clinical practice. Asthma registries were identified through multiple sources and invited to join the workgroup and submit outcome measures. Additional measures were identified through literature searches and reviews of quality measures and consensus statements. Outcome measures were categorized by using the Agency for Healthcare Research and Quality's supported Outcome Measures Framework. Aminimum set of broadly relevant measures was identified. Measure definitions were harmonized through in-person and virtual meetings. Forty-six outcome measures, including those identified from 13 registries, were curated and harmonized into a minimum set of 21 measures in the Outcome Measures Framework categories of survival, clinical response, events of interest, patient-reported outcomes, resource utilization, and experience of care. The harmonized definitions build on existing consensus statements and are appropriate for adult and pediatric patients. The harmonized measures represent a minimum set of outcomes that are relevant in asthma research and clinical practice. Routine and consistent collection of these measures in registries and other systems would support creation of a national research infrastructure to efficiently address new questions and improve patient management and outcomes.

OMERACT Filter 2.1: Elaboration of the Conceptual Framework for Outcome Measurement in Health Intervention Studies.

The Outcome Measures in Rheumatology (OMERACT) Filter 2.0 framework was developed in 2014 to aid core outcome set development by describing the full universe of "measurable aspects of health conditions" from which core domains can be selected. This paper provides elaborations and updated concepts (OMERACT Filter 2.1). At OMERACT 2018, we discussed challenges in the framework application caused by unclear or ambiguous wording and terms and incompletely developed concepts. The updated OMERACT Filter 2.1 framework makes benefits and harms explicit, clarifies concepts, and improves naming of various terms. We expect that the Filter 2.1 framework will improve the process of core set development.