scholarly journals A core outcome set for aphasia treatment research: The ROMA consensus statement

2018 ◽  
Vol 14 (2) ◽  
pp. 180-185 ◽  
Author(s):  
Sarah J Wallace ◽  
Linda Worrall ◽  
Tanya Rose ◽  
Guylaine Le Dorze ◽  
Caterina Breitenstein ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Consensus Statement ◽  
Outcome Measurement ◽  
Core Outcome Set ◽  
Core Outcome ◽  
International Consensus ◽  
Patient Reported ◽  
Treatment Research ◽  
Aphasia Treatment

Background A core outcome set (COS; an agreed, minimum set of outcomes) was needed to address the heterogeneous measurement of outcomes in aphasia treatment research and to facilitate the production of transparent, meaningful, and efficient outcome data. Objective The Research Outcome Measurement in Aphasia (ROMA) consensus statement provides evidence-based recommendations for the measurement of outcomes for adults with post-stroke aphasia within phases I–IV aphasia treatment studies. Methods This statement was informed by a four-year program of research, which comprised investigation of stakeholder-important outcomes using consensus processes, a scoping review of aphasia outcome measurement instruments, and an international consensus meeting. This paper provides an overview of this process and presents the results and recommendations arising from the international consensus meeting. Results Five essential outcome constructs were identified: Language, communication, patient-reported satisfaction with treatment and impact of treatment, emotional wellbeing, and quality of life. Consensus was reached for the following measurement instruments: Language: The Western Aphasia Battery Revised (WAB-R) (74% consensus); emotional wellbeing: General Health Questionnaire (GHQ)-12 (83% consensus); quality of life: Stroke and Aphasia Quality of Life Scale (SAQOL-39) (96% consensus). Consensus was unable to be reached for measures of communication (where multiple measures exist) or patient-reported satisfaction with treatment or impact of treatment (where no measures exist). Discussion Harmonization of the ROMA COS with other core outcome initiatives in stroke rehabilitation is discussed. Ongoing research and consensus processes are outlined. Conclusion The WAB-R, GHQ-12, and SAQOL-39 are recommended to be routinely included within phases I–IV aphasia treatment studies. This consensus statement has been endorsed by the Collaboration of Aphasia Trialists, the British Aphasiology Society, the German Society for Aphasia Research and Therapy, and the Royal College of Speech Language Therapists.

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

2015 ◽  
Vol 25 (3) ◽  
pp. 107-113 ◽  
Author(s):  
Linda Worrall ◽  
Sarah Wallace
Keyword(s):  
Outcome Measurement ◽  
Core Outcome Set ◽  
World Health ◽  
International Classification Of Functioning ◽  
International Consensus ◽  
Treatment Research ◽  
Aphasia Treatment ◽  
Health Organization ◽  
Qualitative Methodologies ◽  
Measurement Practices

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.

scholarly journals Prevailing outcome themes reported by people with degenerative cervical myelopathy: findings from a semi-structured interview (Preprint)

2020 ◽  
Author(s):  
Danyal Zaman Khan ◽  
Siobhan Mairead Fitzpatrick ◽  
Bryn Hilton ◽  
Angus G.K. McNair ◽  
Ellen Sarewitz ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cervical Myelopathy ◽  
Core Outcome Set ◽  
Core Outcome ◽  
Consensus Process ◽  
Outcome Set ◽  
Patient Reported ◽  
Degenerative Cervical Myelopathy ◽  
The Impact

BACKGROUND Degenerative cervical myelopathy (DCM) arises when arthritic changes of the cervical spine cause compression and a progressive injury to the spinal cord. It is common and potentially disabling. People with DCM (PwCM) to have amongst the lowest quality of life scores (SF-36) of chronic disease, although the drivers for this are not entirely understood. DCM research faces a number of challenges, including the heterogenous reporting of study data. The AO Spine RECODE-DCM project is an international consensus process that aims improve research efficiency through formation of a core outcome set (COS). A key part of COS development process is organizing outcomes into domains which represent key aspects of the disease. OBJECTIVE To facilitate this, we sought to qualitatively explore the context and impact of patient reported outcomes in DCM on people with DCM (PwCM) and their supporters. The aim was to improve understanding of patient perspective and assist the organisation of outcomes into domains for the consensus process. METHODS A single focus group was hosted by Myelopathy.org, a charity and support group for PwCM. The 40 minute session was audio-recorded and transcribed verbatim. Data was familiarized and 2 authors performed data coding independently. Codes were grouped into themes and a thematic analysis was performed guided by Braun & Clarke’s six-phase approach. The themes were subsequently reviewed with an independent PwCM stakeholder (ES), assisting in the process of capturing the true context and importance of themes. RESULTS Five PwCM (three men and two women) and three supporters (all women) participated. The average PwCM age was 53 and the median mJOA was 11 (±IQR 2), indicating these PwCM had moderate to severe DCM. 54 codes were grouped into 10 themes that captured the impact of DCM on PwCM and their supporters. These themes included: acceptance of symptoms, anticipatory anxiety, coping mechanisms/resilience, feelings of helplessness, financial consequences, lack of recognition, mental health impact, loss of life control, social reclusiveness/isolation and social stigma CONCLUSIONS This is the first study to undertake qualitative analysis of PwCM perspectives. It has highlighted a number of prevailing themes currently unmeasured in clinical research or care. The determinants of low quality of life in DCM are currently unknown, and these findings provide a novel and so far, unique perspective. These perspectives will be used to inform the development of a core outcome set for DCM which is inclusive of all relevant stakeholders, including PwCM.

Core Outcomes in Aphasia Treatment Research: An e-Delphi Consensus Study of International Aphasia Researchers

2016 ◽  
Vol 25 (4S) ◽  
Author(s):  
Sarah J. Wallace ◽  
Linda Worrall ◽  
Tanya Rose ◽  
Guylaine Le Dorze
Keyword(s):  
Rating Scale ◽  
Core Outcome Set ◽  
International Classification Of Functioning ◽  
Delphi Consensus ◽  
Specific Patient ◽  
Patient Reported ◽  
Delphi Exercise ◽  
Related Quality ◽  
Treatment Research ◽  
Aphasia Treatment

Purpose The purpose of this article is to identify outcome constructs that aphasia researchers consider essential to measure in all aphasia treatment research. Method Purposively sampled researchers were invited to participate in a 3-round e-Delphi exercise. In Round 1, an open-ended question was used to elicit important outcome constructs; responses were analyzed using inductive content analysis. In Rounds 2 and 3, participants rated the importance of each outcome using a 9-point rating scale. Outcomes reaching predefined consensus criteria were further analyzed using International Classification of Functioning, Disability and Health coding. Results Eighty researchers commenced Round 1, with 72 completing the entire survey. High response rates (≥ 85%) were achieved in subsequent rounds. Consensus was reached on 6 outcomes: (a) language functioning in modalities relevant to study aims, (b) impact of treatment from the perspective of the person with aphasia (PWA), (c) communication-related quality of life, (d) satisfaction with intervention from the perspective of the PWA, (e) satisfaction with ability to communicate from the perspective of the PWA, and (f) satisfaction with participation in activities from the perspective of the PWA. Conclusions Consensus was reached that it is essential to measure language function and specific patient-reported outcomes in all aphasia treatment research. These results will contribute to the development of a core outcome set.

A core outcome set for aphasia treatment research: Obstacles, risks, and benefits

Aphasiology ◽  
2014 ◽  
Vol 28 (11) ◽  
pp. 1396-1399 ◽  
Author(s):  
William D. Hula ◽  
Gerasimos Fergadiotis ◽  
Patrick J. Doyle
Keyword(s):  
Core Outcome Set ◽  
Core Outcome ◽  
Risks And Benefits ◽  
Outcome Set ◽  
Treatment Research ◽  
Aphasia Treatment

scholarly journals Sport Specialization, Club Sport Participation, Quality of Life, and Injury History Among High School Athletes

2019 ◽  
Vol 54 (10) ◽  
pp. 1061-1066 ◽  
Author(s):  
Katherine Dahab ◽  
Morgan N. Potter ◽  
Aaron Provance ◽  
Jay Albright ◽  
David R. Howell
Keyword(s):  
Quality Of Life ◽  
High School ◽  
Injury Risk ◽  
Sport Participation ◽  
Outcome Measurement ◽  
High School Athletes ◽  
Patient Reported ◽  
Club Sports ◽  
Club Sport

Context Many factors can affect the injury risk and quality of life among high school athletes. Early sport specialization and club sport participation may be components to consider when assessing the injury risk and quality of life. Objective To investigate patient-reported quality-of-life and injury-history measures among adolescent athletes at different sport-specialization levels and to compare these measures between those who did and those who did not report participating in club sports. Design Cross-sectional study. Setting High school athletic facility. Patients or Other Participants High school student athletes 13 to 18 years of age were recruited and tested during their annual preseason athletic physical examinations. Main Outcome Measure(s) Our primary grouping variables were sport-specialization level (classified as low, moderate, or high) and club sport participation (organized sport outside of traditional school athletics). Our outcome variables were the Patient-Reported Outcome Measurement Information System Pediatric Profile-37 rating, Severity Measure for Depression–Child score, and injury history. Results A total of 97 individuals participated (mean age = 15.2 ± 1.1 years; 38% female). Relatively similar proportions of individuals reported participating at each level of sport specialization (low = 34%, moderate = 40%, high = 26%). Forty-six (48%) participants stated they participated in club sports. No differences were evident in quality of life (P values = .15–.92 across domains), depression (P = .60), or injury history (P > .70) among the specialization groups. Those who described participating in club sports had a higher proportion of time-loss musculoskeletal injuries (63% versus 29%; P = .002) and of injuries requiring imaging, injection, a cast, a brace, or crutches (72% versus 46%; P = .013) than those who did not. Conclusions Although no injury-history differences were found among the sport-specialization groups, a higher proportion of club sport athletes than nonclub sport athletes reported a history of injury. Club sports are generally seen as more competitive, and the higher number of injuries seen in this setting could be related to a higher level of play among club sport athletes.

scholarly journals BEAM study (Breathing, Education, Awareness, Movement): a randomised controlled feasibility trial of tai chi exercise in patients with COPD

2020 ◽  
Vol 7 (1) ◽  
pp. e000697
Author(s):  
Gloria Y. Yeh ◽  
Daniel Litrownik ◽  
Peter M. Wayne ◽  
Douglas Beach ◽  
Elizabeth S. Klings ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Self Efficacy ◽  
Tai Chi ◽  
Emotional Health ◽  
Outcome Measurement ◽  
Feasibility Trial ◽  
Medical Setting ◽  
Patient Reported

BackgroundDespite therapeutic advances, the management of chronic obstructive pulmonary disease (COPD) remains complex. There is growing interest in multidimensional, mind-body exercises to improve both physical and psychosocial aspects of COPD burden. Few US data are available in this population on tai chi (TC) a mind-body exercise incorporating physical activity, breathing and mindful awareness. We explored feasibility and preliminary efficacy of TC in COPD in an US academic medical setting.MethodsPatients with COPD Global Obstructive Lung Disease (GOLD) stages 2–4 were randomised to a 12-week TC programme or education control. At 12 weeks, those in TC were randomised again to continue in maintenance classes or not to further explore optimal duration. All groups were followed to 24 weeks. Feasibility/safety parameters were analysed descriptively. Preliminary between-group differences were estimated in symptoms (dyspnoea, fatigue), health-related quality-of-life (Chronic Respiratory Questionnaire CRQ), cognitive-emotional measures (mood, COPD self-efficacy) and functional status (6 min walk test, lower body strength, flexibility, physical activity).ResultsNinety-two subjects were randomised (N=61 TC, N=31 education). Mean age was 68±8 years, 66% male, mean forced expiratory volume in 1 s % predicted 57±13, 28% were GOLD stage 3–4. Overall retention was 85%. Nineteen adverse events occurred, most being study-unrelated COPD exacerbations. From baseline to 12 weeks, there were between-group improvements favouring TC, in CRQ-total (Cohen’s d effect size (ES)=0.46; adj mean diff (AMD)=0.31), CRQ-emotion (ES=0.54; AMD=0.49), Centre for Epidemiologic Studies Depression (ES=−0.37; AMD=2.39) and Patient-Reported Outcome Measurement Information System (PROMIS)-fatigue (ES=−0.34; AMD=−0.17). From baseline to 24 weeks, there was an improvement favouring TC in CRQ-dyspnoea (ES=0.41; AMD=0.46). Among TC participants, there was a positive effect of maintenance classes on self-efficacy (ES=−0.69; AMD=−0.40), 6 min walk (ES=0.56; AMD=49.26 feet), PROMIS-fatigue (ES=−0.41; AMD=−0.28) and chair stand (0.43; AMD=0.56).ConclusionTC in patients with COPD is feasible and safe. Preliminary analyses support a potential modest role in improving quality-of-life, cognitive-emotional health and function that should be further studied.Trial registration numberNCT01551953.IRB referenceBIDMC 2010P-000412; VA 2540.

scholarly journals Sensitivity and specificity of the URAM scale for Dupuytren contracture: A systematic review and meta-analysis

2020 ◽  
Author(s):  
Diego Gomez-Herrero ◽  
Rafael Sanjuan-Cervero ◽  
Pedro Vazquez-Ferreiro ◽  
Francisco Javier Carrera-Hueso ◽  
Jaime Eduardo Poquet-Jornet ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Regression Model ◽  
Outcome Measurement ◽  
Meta Analysis ◽  
Treatment Modalities ◽  
Measurement Tool ◽  
Patient Reported ◽  
Dupuytren Contracture ◽  
Meta Regression

Abstract Background The URAM (Unité Rhumatologique des Affections de la Main) scale is a patient-reported functional outcome measurement tool validated for exclusive use in Dupuytren contracture (DC) a condition in which one or more fingers become permanently bent in a flexed position. The current study´s purposes were to evaluate: How sensitive and specific is the URAM scale for defining quality of life in patients with in DC and how sensitive to change is the URAM scale after treatment. Methods We performed a meta-analysis of all relevant articles published in PubMed, Embase, Cochrane, Google Scholar, LILACS and in various gray literature databases that describe the use of the URAM. We built three models: a hierarchical summary receiver operating characteristic (HSROC) model to determine the optimal threshold for defining DC, a difference in means models to assess the magnitude of the effect of different treatment modalities, and a meta-regression model to determine the effect on patient quality of life questionnaires according to variations in Tubiana scores after treatment (URAM). Results The HSROC and bivariate models showed a sensitivity of 80.23% (95%CI: 75.66 to 84.14) and an overall specificity of 2.61% (95%CI: 1.11–6.05). The second model showed an overall difference in means of 1.95 (95%CI: -2.86 to -1.04). The coefficient obtained in the meta-regression model was − 1.666 (95%CI: -4.183 to 0.851). Conclusion The URAM scale is highly sensitive to changes in DC but has low specificity. It also showed a strong correlation with worsening of finger contracture.

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