Framework Of Outcome Measures Research Articles

The Impact of Aphasia Camp Participation on Quality of Life: A Primary Progressive Aphasia Perspective.

Individuals with primary progressive aphasia (PPA) and their caregivers are at risk for decreased quality of life (QoL) due to their progressive condition. Aphasia camps are an intervention that can improve QoL, yet individuals with PPA are underrepresented at aphasia camps relative to those with poststroke aphasia. The purpose of this exploratory case study was to examine the effect of participation in aphasia camp on the QoL of a couple impacted by PPA. The Living with Aphasia: Framework for Outcome Measurement (A-FROM) was used to guide a semistructured interview with an individual with PPA and her spouse, both of whom had attended the Alberta Aphasia Camp for 4 years. Conventional content analysis with an inductive approach was used to analyze results. Concepts that emerged from the interview were organized into pre-camp, during, and post-camp categories. Aspects of camp that had an effect on post-camp QoL for this couple with PPA included expanding social connections and introduction to new activities. Personal characteristics exhibited by the couple had an impact on their experience of aphasia camp and how they incorporated their experiences into their everyday lives post-camp. Aphasia camps are a participation-based service approach that can benefit people with aphasia regardless of etiology. A consideration of personal factors of potential campers with PPA, and the provision of PPA-specific resources, is recommended for programs such as aphasia camps that incorporate participants with mixed etiologies.

The clinical utility of the IRAC component of the Framework for Routine Outcome Measurement in Liaison Psychiatry (FROM-LP).

Accuracy of referrals to our team improved from 73.8 to 93.7% following intervention. Referral requests that were fully achieved improved from 57.4 to 77.8%, and referral requests that were not achieved decreased from 26.2 to 6.4%.Clinical implicationsThe IRAC component of the FROM-LP measures what it was developed for, and thus has clinical utility supporting its widespread adoption across liaison services in the National Health Service.Declaration of interestNone.

Positive Youth Development at Camps for Youth with Chronic Illness: A Systematic Review of the Literature

This study aimed to systematically review all the literature on camps for youth with childhood onset chronic illness (COCI) utilizing the Positive Youth Development (PYD) framework to assess camp processes and psychosocial outcomes. This paper describes a unique dataset of 425 included studies published over the last 70 years and gives a broad overview of camp demographics, processes that align with PYD’s Big 3 (sustained adult-youth relationships, skill-building, and youth leadership) and measured outcomes that align with the PYD’s 5 Cs (Competence, Confidence, Character, Social Connectedness, and Compassion). Among the included studies, 36% included diabetes camps, 15% included camps accepting multiple illnesses, 12% included cancer camps, and 11% included asthma camps. The majority of participants were under the age of 16. While no study explicitly used the PYD approach, over 90% of studies described camps that deployed both active leadership and sustained positive relationships, while only 59% of studies described camps providing the opportunity to learn life skills. Although no study utilized the PYD 5 Cs framework for outcome measurement, 47% addressed outcomes related to Competence, 44% addressed Confidence, 33% addressed Connection, 4% addressed Compassion, and 2% addressed Character. This review highlights opportunities for camp leadership to align their programming with the PYD framework, to incorporate older adolescents and young adults and, ultimately, to improve positive adult outcomes for youth with COCI. It provides a starting point for future research evaluating illness-specific camps using a PYD approach.

A Framework of System Level Measures Promotes Alliancing and System Integration

Introduction: The New Zealand health system is organised by 20 District Health Boards (DHB) and 30 Primary Healthcare Organisations (PHO). In 2012, every DHB was required to enter into a district alliance with the PHOs serving their resident population. The NZ Ministry of Health has co-designed with health sector clinicians, analysts and managers a framework of System Level Measures (SLM) for continuous quality improvement and system integration. Method: Basic underlying principles for SLM were established to determine selection, principally that they were outcomes with a clear focus on health equity. Data had to be available, feasible and timely. Using a collaborative approach engaging Ministry of Health and sector clinicians, data analysts and managers, and consumers a set of six measures has been implemented: ASH rates in 0-4 year old children; Proportion of babies living in a smoke-free home; Patient experience of care; Acute hospital bed days per capita; Amenable mortality; and a Youth Health composite SLM. The SLMs are underpinned by a large set of contributory measures of health processes and activities. A measures library was established as a repository of data definitions and sources in order to standardise measurement nationally and allow comparative analysis. The Ministry of Health has made patient identifiable data held in national collections available down to practice level via secure servers, for local managers and clinicians to use for quality improvement. Each district alliance is required to develop a quality improvement plan based on their analysis of local data on SLM, service configuration and the needs of their local population. The alliance must set an improvement milestone for each SLM and detail the improvement activities it will implement using improvement science methodology. The plan also details the contributory measures that will be used to track local progress and contains signatures of all parties in the alliance. The Ministry of Health releases funding to PHOs for capacity and capability development as seed funding and on approval of the plans. A small incentive funding pool is applied to achievement of SLM milestones. Results: In the first year of implementation, all twenty district alliances submitted a plan by the due date setting improvement milestones for four SLMs. The framework stimulated primary and secondary care clinicians, PHO senior managers and DHB chairs to collaborate on quality improvement. The Ministry gained knowledge about the maturity of alliances and their capability and capacity for improvement science methodology and analytics. This was found highly variable between districts. In the second year, two developmental SLMs were added and the quality of plans improved. Conclusion: New Zealand has developed and implemented a framework of system level health outcome measures to stimulate alliances between primary healthcare and secondary care to engage in quality improvement activities taking a co-design and patient-centred approach. Early indications are promising that the framework can deliver improved outcomes both for the system and the patients.

Status Complexicus? The Emergence of Pediatric Complex Care.

Discourse about childhood chronic conditions has transitioned in the last decade from focusing primarily on broad groups of children with special health care needs to concentrating in large part on smaller groups of children with medical complexity (CMC). Although a variety of definitions have been applied, the term CMC has most commonly been defined as children and youth with serious chronic conditions, substantial functional limitations, increased health and other service needs, and increased health care costs. The increasing attention paid to CMC has occurred because these children are growing in impact, represent a disproportionate share of health system costs, and require policy and programmatic interventions that differ in many ways from broader groups of children with special health care needs. But will this change in focus lead to meaningful changes in outcomes for children with serious chronic diseases, or is the pediatric community simply adopting terminology with resonance in adult-focused health systems? In this article, we will explore the implications of the rapid emergence of pediatric complex care in child health services practice and research. As an emerging field, pediatric care systems should thoughtfully and rapidly develop evidence-based solutions to the new challenges of caring for CMC, including (1) clearer definitions of the target population, (2) a more appropriate incorporation of components of care that occur outside of hospitals, and (3) a more comprehensive outcomes measurement framework, including the recognition of potential limitations of cost containment as a target for improved care for CMC.

Liaison psychiatry for older adults in the general hospital: service activity, development and outcomes.

The service reviewed 2153 patients over 6 years with referral rates and case-load characteristics comparable to those described in a previous study period. The team saw 82% of patients on the day they were referred. Data and outcome measures collected showed significant complexity in the cases seen and statistically significant improvement in Health of the Nation Outcome Scales (HoNOS) scores following service input. Clinical implications The outcome measures used were limited, but the study supports the need for specialist liaison psychiatry for older adults (LPOA) services in the general hospital. The Framework of Outcome Measures - Liaison Psychiatry has now been introduced, but it remains unclear how valid this is in LPOA. It is of note that cost-effectiveness secondary to service input and training activities are not adequately monitored. Declaration of interest None.

Thyroid cancer patients receiving an interdisciplinary team-based care approach (ITCA-ThyCa) appear to display better outcomes: Program evaluation results indicating a need for further integrated care and support.

Thyroid cancer (ThyCa) is generally associated with a favorable prognosis and excellent surgical outcomes. Consequently, its treatment is medically focused and current guidelines recommend interdisciplinary care including access to a nurse for complex cases alone. To date, no studies have evaluated the need for and impact of an Interdisciplinary Team-based Care Approach (ITCA-ThyCa) for general thyroid cancer patients, including a dedicated nurse as part of a larger interdisciplinary team, as well as patient-reported outcomes, as is recommended worldwide in cancer care. Our aim was to evaluate such a program. The ITCA-ThyCa was evaluated within a quasi-experimental design using the Centers for Disease Control Framework for Program Evaluation, including process and outcome measures. Patients eligible were adults with a biopsy indicating confirmed or highly suspicious ThyCa (TNM-Classification+Bethesda score of V/VI). The intervention group (IG) received ITCA-ThyCa and the comparison group (CG), usual care alone. In our sample comprised of 200 participants (122 IG; 78 CG), ITCA-ThyCa patients appeared to show significantly better outcomes than CG patients, namely, higher levels of overall well-being (P=.001) and fewer physical (P=.003) and practical (P=.003) issues and concerns. More satisfied with their overall care (P=.028), including care coordination (P=.049), they reported their health care provider as more approachable (P=.007), respectful (P=.005), and trustworthy (P=.077; trend) and were more likely to recommend their hospital (P=.02). Ninety-eight percent of IG patients recommended ITCA-ThyCa. Data from our program illustrates that hospital resources should not be allocated based on medical trajectory alone and challenges the idea that ThyCa is "straightforward." ThyCa patients seem to experience symptom distress at a level comparable to-or exceeding-that of general oncological patients despite their promising medical outcomes, indicating that better integrated care and support are in order.

A multidimensional Framework for Routine Outcome Measurement in Liaison Psychiatry (FROM-LP).

In the field of liaison psychiatry, as in all areas of healthcare, there is an essential need for well-organised and consistent collection of information on outcomes, from a range of perspectives. This special article introduces, and describes the development of, the multidimensional Framework for Routine Outcome Measurement in Liaison Psychiatry (FROM-LP). This was challenging owing to the variety of service settings and types of intervention which characterise liaison psychiatry. Similar challenges may be faced by other specialties and this, along with the direct relevance of much of the eventual content of the framework, will broaden the interest of this article.

Intelligent outcome measures in liaison psychiatry: essential even if not desirable: Commentary on … a multidimensional Framework for Routine Outcome Measurement in Liaison Psychiatry (FROM-LP).

Service development is guided by outcome measures that inform service commissioners and providers. Those in liaison psychiatry should be encouraged to develop a positive approach that integrates the collection of outcome measures into everyday clinical practice. The Framework for Routine Outcome Measurement in Liaison Psychiatry (FROM-LP) is a very useful tool to measure service quality and clinical effectiveness, using a combination of clinician-rated and patient-rated outcome measures and patient-rated experience measures. However, it does not include measures of cost-effectiveness or training activities. The FROM-LP is a significant step towards developing nationally unified outcome measures.

The ICF, Relationship-Centred Care and Research Outcome Measurement: Carol Frattali's Impact on Aphasia Research

Outcome measurement was a major focus of Carol Frattali's work. This article describes three aphasia research initiatives that have followed from her early publications. The first is the application of the World Health Organization (WHO) International Classification of Functioning, Disability and Health (ICF) to aphasia. The Living with Aphasia: A Framework for Outcome Measurement (A-FROM) is a reinterpretation of the ICF specifically as it applies to aphasia. The Assessment for Living with Aphasia (ALA) is an assessment that is derived from the A-FROM. The second initiative is the program of research that has described aphasia and aphasia rehabilitation from the patient perspective. Using qualitative methodologies, this research has highlighted the need for relationship-centred care in aphasia services. Finally, a current project is described that seeks to gain international consensus on a core outcome set for aphasia treatment research. This will help researchers combine data in effectiveness studies. To achieve the best outcomes for people with aphasia, there is a need to realize Carol Frattali's vision and ensure the continued use of unifying frameworks, relationship-centered practice, consumer-focused research, and consistent outcome measurement practices.

A Triple Aim Framework For The Performance Assessment Of Disease Management Programs

Objectives: A structured and comprehensive assessment of disease management implementations is not straightforward due to the broadness of the interventions and the various evaluation possibilities. The aim of this study was to develop a comprehensive framework for outcome measurement of disease management programs based on the triple aim framework of the Institute for Healthcare Improvement to facilitate future performance assessment using multi-criteria decision analysis (MCDA). Methods: Based on literature review and our expertise in performing economic evaluations in disease management we identified domains of outcomes for each aim of the triple aim framework. For each domain we identified indicators to assess the performance of disease management programs. Results: The first aim of the framework, population health improvement, was subdivided into the domains health-adjusted life years, mortality, wellbeing, health-related quality of life (HrQol), complications, symptoms, clinical outcomes, healthy behaviour, knowledge, and self-management skills. The second aim, improvement of patient experience, was subdivided into patient involvement, patient centeredness, continuity of care, coordination, communication, information systems, safety and access. The third aim of cost reductions distinguished program, medical and nonmedical costs. Potential Indicators of the identified sub-criteria include the ASCOT (Adult Social Care Outcomes Toolkit) for measuring wellbeing, smoking rates and BMI (Body Mass Index) to measure healthy behaviour, the EuroQol-5D and Short Form-36 for measuring physical, mental and social HrQol, different dimensions of the PACIC (Patient Assessment of Chronic Illness Care) and CAHPS (Consumer Assessment of Healthcare Providers and Systems) for measuring patient experience and several measurement tools for measuring friction costs and costs of informal care. Conclusions: In designing a structured outcome-based framework for the performance evaluation of disease management programs we paved the way for future work including a comprehensive evaluation of disease management using MCDA. MCDA not only requires measurement of indicators but also weighting of their relative importance.

Systematic review to identify and appraise outcome measures used to evaluate childhood obesity treatment interventions (CoOR): evidence of purpose, application, validity, reliability and sensitivity.

Lack of uniformity in outcome measures used in evaluations of childhood obesity treatment interventions can impede the ability to assess effectiveness and limits comparisons across trials. To identify and appraise outcome measures to produce a framework of recommended measures for use in evaluations of childhood obesity treatment interventions. Eleven electronic databases were searched between August and December 2011, including MEDLINE; MEDLINE In-Process and Other Non-Indexed Citations; EMBASE; PsycINFO; Health Management Information Consortium (HMIC); Allied and Complementary Medicine Database (AMED); Global Health, Maternity and Infant Care (all Ovid); Cumulative Index to Nursing and Allied Health Literature (CINAHL) (EBSCOhost); Science Citation Index (SCI) [Web of Science (WoS)]; and The Cochrane Library (Wiley) - from the date of inception, with no language restrictions. This was supported by review of relevant grey literature and trial databases. Two searches were conducted to identify (1) outcome measures and corresponding citations used in published childhood obesity treatment evaluations and (2) manuscripts describing the development and/or evaluation of the outcome measures used in the childhood intervention obesity evaluations. Search 1 search strategy (review of trials) was modelled on elements of a review by Luttikhuis et al. (Oude Luttikhuis H, Baur L, Jansen H, Shrewsbury VA, O'Malley C, Stolk RP, et al. Interventions for treating obesity in children. Cochrane Database Syst Rev 2009;1:CD001872). Search 2 strategy (methodology papers) was built on Terwee et al.'s search filter (Terwee CB, Jansma EP, Riphagen II, de Vet HCW. Development of a methodological PubMed search filter for finding studies on measurement properties of measurement instruments. Qual Life Res 2009;18:1115-23). Eligible papers were appraised for quality initially by the internal project team. This was followed by an external appraisal by expert collaborators in order to agree which outcome measures should be recommended for the Childhood obesity Outcomes Review (CoOR) outcome measures framework. Three hundred and seventy-nine manuscripts describing 180 outcome measures met eligibility criteria. Appraisal of these resulted in the recommendation of 36 measures for the CoOR outcome measures framework. Recommended primary outcome measures were body mass index (BMI) and dual-energy X-ray absorptiometry (DXA). Experts did not advocate any self-reported measures where objective measurement was possible (e.g. physical activity). Physiological outcomes hold potential to be primary outcomes, as they are indicators of cardiovascular health, but without evidence of what constitutes a minimally importance difference they have remained as secondary outcomes (although the corresponding lack of evidence for BMI and DXA is acknowledged). No preference-based quality-of-life measures were identified that would enable economic evaluation via calculation of quality-adjusted life-years. Few measures reported evaluating responsiveness. Proposed recommended measures are fit for use as outcome measures within studies that evaluate childhood obesity treatment evaluations specifically. These may or may not be suitable for other study designs, and some excluded measures may be more suitable in other study designs. The CoOR outcome measures framework provides clear guidance of recommended primary and secondary outcome measures. This will enhance comparability between treatment evaluations and ensure that appropriate measures are being used. Where possible, future work should focus on modification and evaluation of existing measures rather than development of tools de nova. In addition, it is recommended that a similar outcome measures framework is produced to support evaluation of adult obesity programmes. The National Institute for Health Research Health Technology Assessment programme.

Framework of outcome measures recommended for use in the evaluation of childhood obesity treatment interventions: the CoOR framework.

Consensus is lacking in determining appropriate outcome measures for assessment of childhood obesity treatments. Inconsistency in the use and reporting of such measures impedes comparisons between treatments and limits consideration of effectiveness. This study aimed to produce a framework of recommended outcome measures: the Childhood obesity treatment evaluation Outcomes Review (CoOR) framework. A systematic review including two searches was conducted to identify (1) existing trial outcome measures and (2) manuscripts describing development/evaluation of outcome measures. Outcomes included anthropometry, diet, eating behaviours, physical activity, sedentary time/behaviour, fitness, physiology, environment, psychological well-being and health-related quality of life. Eligible measures were appraised by the internal team using a system developed from international guidelines, followed by appraisal from national external expert collaborators. A total of 25,486 papers were identified through both searches. Eligible search 1 trial papers cited 417 additional papers linked to outcome measures, of which 56 were eligible. A further 297 outcome development/evaluation papers met eligibility criteria from search 2. Combined, these described 191 outcome measures. After internal and external appraisal, 52 measures across 10 outcomes were recommended for inclusion in the CoOR framework. Application of the CoOR framework will ensure greater consistency in choosing robust outcome measures that are appropriate to population characteristics.

Toward a Generalized Framework of Core Measurement Areas in Clinical Trials: A Position Paper for OMERACT 11

The Outcome Measures in Rheumatology (OMERACT) international consensus initiative has successfully developed core sets of outcome measures for trials of many rheumatologic conditions, but its expanding scope called for clarification and updating of its underlying conceptual framework and working process. To develop a core set of what we propose to call outcome measurement instruments, consensus must be reached both on what to measure and how to measure. This article deals with the first part: a framework necessary to ensure comprehensiveness of the domains chosen for measurement. We formulated a conceptual framework of core measurement areas in clinical trials, for discussion at the OMERACT 11 conference. We formulated a framework and definitions of key concepts adapted from the literature, and followed an iterative consensus process (small group processes and an Internet-based survey) of those involved including patients, health professionals, and methodologists within and outside rheumatology. The draft framework comprises 4 core "areas": death, life impact (all aspects of how a patient feels or functions), resource use (monetary and other costs of the health condition and interventions), and pathophysiologic manifestations (disease-specific clinical and psychological signs, biomarkers, and potential surrogate outcome measures necessary to assess specific effects). The survey responses (262 of 2293, response rate 11%) indicated broad agreement with the draft framework and the proposed definitions of key concepts, including understandability and feasibility. A total of 283 comments were processed. In an iterative process, we have developed a generic framework for outcome measurement and working definitions of key concepts ready for discussion at the OMERACT 11 conference.

An evaluation framework for outcome and impact measures

Competitive intelligence (CI) measurement practices within organizations remain fragmentary and elusive, although prescriptive CI performance and impact measures have been proposed in the literature. This study responds to calls for research into CI measurement in order to examine why organizations fail to measure CI, and to develop an evaluation framework for prescriptive measures that would support the evolution of best practices in measurement. A qualitative study (the ‘users study') consisting of interviews and shared negotiated texts with 12 users of CI was conducted. Study participants were senior managers and executives who use CI in the course of their work responsibilities at their respective individual organizations. Participants indicated that measurement cost, confused conceptualizations of CI measurement, and skepticism regarding the informativeness of measurement were obstacles to the implementation of CI measurement within their organizations. Although few participants conduct measurement activities, participants were all able to describe the ideal characteristics of CI outcome and impact measures. That list is here combined with the findings of an earlier study (the ‘experts study') conducted by the authors (Gainor & Bouthillier, 2014), in order to develop the evaluation framework provided here. This study provides a rare account of CI user perspectives on the rationale behind the lack of CI measurement within organizations, and a unique tool, the evaluation framework, which may be used to support both research and training within the field of CI.

FRI0521 A framework and process to develop core outcome measurement sets for clinical trials in rheumatology: omeract filter 2.0

BackgroundLack of standardization of outcome measures limits the usefulness of clinical trial evidence to advance clinical practice and improve health. Agreement on a core set of outcome measures to be...

Working Inclusively with Outcomes that Matter

This article will provide an illustration of the way in which St. Andrew’s Project, Camphill Aberdeen works with an outcomes measurement framework termed ‘Outcomes that Matter’. Therapeutic support is negotiated with children, their families and supporting agencies following a comprehensive ecological assessment. The intended outcomes for any short or medium term intervention are then agreed with those involved. Achievement profiles are drawn up with each young person on a weekly basis, forming the basis of an outcome-based intervention plan. An example will be provided of recent work with a young person, in which the ‘Outcomes that Matter’ recording format was used collaboratively when working with a particular practice issue.

The Importance of Aphasia Community Programs in Supporting Self-Determination in PWA

Aphasia support groups and aphasia community centers have been increasing in number over the past 2 decades in the United States and abroad. Participation in these innovative community programs can support the process of self-determination in people with aphasia. In this article, I discuss specific examples of how this occurs and, in addition, review the Living With Aphasia: Framework for Outcome Measurement (A-FROM) model (Kagan et al., 2008) as a useful way to conceptualize the individual benefits that people with aphasia (PWA) may receive from participation in aphasia community centers. The article concludes with a case presentation exemplifying the multi-level benefits achieved from participating in aphasia community programs.

Mapping Patient-Specific Functional Scale (PSFS) Items to the International Classification of Functioning, Disability and Health (ICF)

The International Classification of Functioning, Disability and Health (ICF) provides a common framework for clinical outcome measurement. Because the Patient-Specific Functional Scale (PSFS) is widely used for documenting change over time in individual patients receiving musculoskeletal physical therapy, investigation of the extent to which PSFS items reflect the ICF is needed. The study objective was to investigate the extent to which patient-generated PSFS items reflect ICF domains. This investigation was an observational content validity study. A total of 2,911 PSFS items from 1,050 files for patients with musculoskeletal disorders were analyzed. The data were from a random sample of participants in the Otago Outcome Measures Project at 4 clinics of the School of Physiotherapy, University of Otago, situated in 3 New Zealand cities. Patient-nominated PSFS items were categorized and mapped with thematic analysis techniques to ICF components, chapters, and categories. Subgroup analyses were conducted for body region of injury and age ranges. All (100%) of the analyzed items could be mapped to the ICF. Most patient-nominated items mapped to the activity component (80.0%), some items mapped to the participation component (7.7%), other items were related to impairment (7.4%), and the fourth group contained items that overlapped the activity and participation components (4.9%). Similar results were found for each of the 5 body regions and across age ranges in subgroup analyses. These results are limited to individual patients seeking musculoskeletal physical therapy. Patient-generated PSFS items were investigated. The ICF activity component was most commonly represented by patient-nominated PSFS items, the participation component was moderately represented, and impairment was least represented. Hence, the PSFS would complement impairment-based clinical outcome measures.

A-FROM in Action at the Aphasia Institute

Aphasia centers are in an excellent position to contribute to the broad definition of health by the World Health Organization: the ability to live life to its full potential. An expansion of this definition by the World Health Organization International Classification of Functioning, Disability and Health (ICF) forms the basis for a user-friendly and ICF-compatible framework for planning interventions that ensure maximum real-life outcome and impact for people with aphasia and their families. This article describes Living with Aphasia: Framework for Outcome Measurement and its practical application to aphasia centers in the areas of direct service, outcome measurement, and advocacy and awareness. Examples will be drawn from the Aphasia Institute in Toronto. A case will be made for all aphasia centers to use the ICF or an adaptation of it to further the work of this sector and strengthen its credibility.