Toward a Measure of Communicative Participation for Children with Developmental Speech Disorders

2017 ◽  
Vol 38 (03) ◽  
pp. 184-190 ◽  
Author(s):  
Meghan Darling-White
Keyword(s):  
Patient Reported Outcome ◽  
Speech Disorders ◽  
Assessment Tools ◽  
Cultural Issues ◽  
Parent Proxy Report ◽  
Patient Reported ◽  
Pediatric Populations ◽  
Group 3 ◽  
Communicative Participation ◽  
Pro Tools

AbstractThe general lack of assessment tools that adequately measure communicative participation has been well documented in the adult literature. However, there has been no systematic attempt to document the availability of these assessment tools in pediatric populations. The purpose of this literature review was to investigate the availability of patient-reported outcome (PRO) tools that measure communicative participation in children. Results indicate that there are no such tools that measure communicative participation in children at this time. In an effort to inspire researchers to develop these tools, the following guidelines for the development of pediatric PRO tools are discussed: (1) consider age-based criteria for tool development and administration, (2) design and format the tool specifically for the target age group, (3) establish content validity, (4) determine whether a parent proxy-report tool is necessary, and (5) consider cross-cultural issues.

scholarly journals Long-Term Systematic Outcome Assessment of Patients Following Spine Surgery in Rwanda: The Use of Patient Reported Outcome Tools

2020 ◽  
pp. 1-11
Author(s):  
Steven Nshuti ◽  
Steven Nshuti ◽  
Beryl Guterman ◽  
David Hakizimana ◽  
Eric Buramba ◽  
...  
Keyword(s):  
Spinal Cord ◽  
Spine Surgery ◽  
Patient Reported Outcome ◽  
Severe Disability ◽  
Assessment Tools ◽  
Trauma Patients ◽  
Patient Reported ◽  
Injured Patients ◽  
Spinal Cord Injured ◽  
Trauma Group

Background: We conducted a systematic evaluation of neurological, functional, quality of life and pain outcomes of patients who underwent spine surgery in our neurosurgery unit using patient reported outcome (PRO) assessment tools. Methods: The study was performed by assessing outcome of all the patients who underwent spine surgery at our department in a cross-sectional fashion using a 5-year operative database. This was an all-inclusive spine outcome study with 2 main groups; a trauma group composed of spinal cord injured patients and a non-trauma group composed of patients with spinal degenerative diseases, spinal tumors, deformity, infection, and vascular malformations. Results: Our analysis included 197 patients who met inclusion criteria for the study. The overall study population was mainly dominated by spinal cord injured patients and spinal degenerative disease patients; 34 % and 60.9 % respectively. The average age was 42 years (range: 15-78 years) with patients in the trauma group being substantially younger than the rest of the cohort. Eighty five percent of trauma patients presented with spinal cord injury causing neurological deficit, of which 58% had no preservation of motor function below the level of injury; ASIA IS A and B (35.8% and 22% respectively). Additionally, 68% of patients in the non-trauma group underwent surgery with severe disability. Overall, 60% of all trauma patients showed improvement of their neurological status as per ASIA IS. Of note, 40% of patients with preoperative ASIA IS B and 8% of patients with preoperative ASIA IS A gained full neurological recovery postoperatively (ASIA IS E). Using the Core outcome measurement Index (COMI) from patient’s perspective, 78.6% of patients reported to have no pain significant enough to make them stop their normal daily activities. Rate of overall return to work (RTW) in the non-trauma group was 77% with 52% of patients being fully functional without condition-related work interruptions. Conclusion: Careful selection of patients for surgery is key for good outcome of patients undergoing spine surgery. In contradiction to most other patients’ groups, patients with severe disability with spinal degenerative conditions might benefit most from surgery. Postoperative outcome of spinal cord injured patients with severe neurological deficits might be better than commonly believed. Controlled prospective data is likely to draw stronger conclusions.

Chronic Myeloid Leukemia: What Every Practitioner Needs to Know in 2017

2017 ◽  
pp. 468-479
Author(s):  
Hanna Jean Khoury ◽  
Loretta A. Williams ◽  
Ehab Atallah ◽  
Rüdiger Hehlmann
Keyword(s):  
Chronic Myeloid Leukemia ◽  
Myeloid Leukemia ◽  
Kinase Inhibitors ◽  
Quantitative Polymerase Chain Reaction ◽  
Chronic Phase ◽  
Safety Net ◽  
Patient Reported Outcome ◽  
Patient Reported ◽  
Treatment Free Remission ◽  
Pro Tools

The prognosis of chronic phase chronic myeloid leukemia (CML) has improved so that life expectancy for patients responding to tyrosine kinase inhibitors (TKIs) is now equivalent to age-matched controls. Attention should be paid to comorbidities that impact survival. The success of TKI therapy can be easily and reliably assessed at well-accepted time points using quantitative polymerase chain reaction (PCR) standardized to the international scale. Patient-reported outcome (PRO) tools are readily available for use in the clinic and provide complementary information on the tolerance of TKIs. Effectively managing adverse events of TKIs can improve compliance and quality of life. Discontinuation of TKIs is the next frontier in CML. In select patients with sustained deep molecular remission, a discontinuation of TKI is associated with a durable treatment-free remission in approximately 50%. Patient engagement in their discontinuation can be achieved through a provider multi-team coaching, is complementary to the available guidelines, and may provide an additional safety net so that these discontinuations remain safe when applied in general practices.

Validated assessment tools for psychological, spiritual, and family issues

2015 ◽  
Author(s):  
Linda L. Emanuel ◽  
Richard A. Powell ◽  
George Handzo ◽  
Kelly Nichole Michelson ◽  
Lara Dhingra
Keyword(s):  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Assessment Tools ◽  
Domain Specific ◽  
Family Issues ◽  
Patient Reported ◽  
Measurement Tools ◽  
Validity Studies ◽  
And Function ◽  
Generalized State

Palliative care has a foundational commitment to integrate attention to psychological, spiritual, and family issues with biomedical matters. This requires being able to measure them. A limited number of assessment tools have been subjected to validity studies. Many measures are for service assessment, including assessments made as part of quality improvement; but a range of rigorously developed measures, including patient-reported outcome measures, is available. Those that are multidimensional and feasible in the real world of patient care are fewer. Domain-specific screening and measurement tools that focus on depression, anxiety, and a more generalized state of psychological distress as well as spirituality are described. Additional tools for measuring delirium and adjustment disorders or grief and bereavement are referenced. While rigorous, comprehensive family assessments and measures are not available, multiple measures that focus on particular aspects of family need and function are described.

scholarly journals Perspectives on the Psychosocial Management of Oromandibular Dystonia

2017 ◽  
Vol 38 (03) ◽  
pp. 173-183 ◽  
Author(s):  
Lauren Siegel ◽  
Allyson Page
Keyword(s):  
Quality Of Life ◽  
Outcome Measures ◽  
Psychosocial Functioning ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Muscle Contractions ◽  
Oromandibular Dystonia ◽  
Patient Reported ◽  
Communicative Participation

AbstractOromandibular dystonia (OMD) is a rare disorder of movement characterized by tonic muscle contractions that can result in involuntary, repetitive, and patterned muscle contractions of the lingual musculature, labial musculature, and/or muscles of mastication. As a result, dysarthria can be present that can lead to reduced speech intelligibility and have an adverse impact on psychosocial functioning. In this article, we will describe the clinical and speech characteristics of OMD and the various methods of treatment. Then we will introduce and describe patient-reported outcome measures that assess two aspects of psychosocial functioning: communicative participation and quality of life. We will describe the current state of knowledge as it relates to communicative participation and quality of life in this clinical population, and, finally, we will advocate that speech-language pathologists have a unique role in the care of individuals with OMD through the inclusion of patient-reported outcome measures to provide a comprehensive and holistic management plan.

scholarly journals Psychosocial Impact of Dysarthria: The Patient-Reported Outcome as Part of the Clinical Management

2019 ◽  
Vol 19 (1) ◽  
pp. 12-21 ◽  
Author(s):  
Cyril Atkinson-Clement ◽  
Alban Letanneux ◽  
Guillaume Baille ◽  
Marie-Charlotte Cuartero ◽  
Lauriane Véron-Delor ◽  
...  
Keyword(s):  
Neurological Disorders ◽  
Speech Intelligibility ◽  
Discriminant Validity ◽  
Short Form ◽  
Neurological Diseases ◽  
Patient Reported Outcome ◽  
Psychosocial Impact ◽  
Assessment Tools ◽  
Psychosocial Consequences ◽  
Patient Reported

Background: Dysarthria in neurological disorders can have psychosocial consequences. The dysarthric speaker’s perspective towards the disorder’s psychosocial impact is essential in its global assessment and management. For such purposes, assessment tools such as the Dysarthria Impact Profile (DIP) are indispensable. Objective: We aimed to confirm the relevance of using the DIP to quantify the psychosocial consequences of dysarthria in neurological diseases. Methods: We studied 120 participants, 15 healthy controls and 105 patients with different kinds of dysarthria induced by several neurological disorders (Parkinson’s disease [PD], Huntington’s disease, dystonia, cerebellar ataxia, progressive supranuclear palsy [PSP], multiple system atrophy, lateral amyotrophic sclerosis). All participants underwent a cognitive evaluation and a speech intelligibility assessment and completed three self-reported questionnaires: the 36-Item Short Form Health Survey, the Voice Handicap Index (VHI), and the DIP. Results: The psychometric properties of the DIP were confirmed, including internal consistency (α = 0.93), concurrent validity (correlation with the VHI: r = –0.77), and discriminant validity (accuracy = 0.93). Psychosocial impact of dysarthria was revealed by the DIP for all patients. Intelligibility loss was found strongly correlated with the psychosocial impact of dysarthria: for a similar level of intelligibility impairment, the DIP total score was similar regardless of the pathological group. However, our findings suggest that the psychosocial impact measured by the DIP could be partially independent from the severity of dysarthria (indirectly addressed here via speech intelligibility): the DIP was able to detect patients without any intelligibility impairment, but with a psychosocial impact. Conclusions: All patients reported a communication complaint, attested by the DIP scores, despite the fact that not all patients, notably PD, ataxic, and PSP patients, had an intelligibility deficit. The DIP should be used in clinical practice to contribute to a holistic evaluation and management of functional communication in patients with dysarthria.

scholarly journals Development of the HOOSglobal to Assess Patient-Reported Outcomes in Patients Undergoing Hip Preservation Procedures

2018 ◽  
Vol 46 (4) ◽  
pp. 940-946 ◽  
Author(s):  
Cale A. Jacobs ◽  
Michael R. Peabody ◽  
Stephen T. Duncan ◽  
Ryan D. Muchow ◽  
Ryan M. Nunley ◽  
...  
Keyword(s):  
Los Angeles ◽  
Short Form ◽  
Periacetabular Osteotomy ◽  
Patient Reported Outcome ◽  
Harris Hip Score ◽  
Level Of Evidence ◽  
Patient Reported ◽  
Orthopaedic Community ◽  
Pro Tools ◽  
Modified Harris Hip Score

Background: The creation of a single patient-reported outcome (PRO) platform validated across hip preservation, osteoarthritis (OA), and total hip arthroplasty (THA) populations may reduce barriers and streamline the routine collection of PROs in clinical practice. As such, the purpose of this study was to determine if augmenting the Hip disability and Osteoarthritis Outcome Score–Joint Replacement (HOOS, JR) with additional HOOS questions would result in a PRO platform that could be used across a wider spectrum of hip patient populations. Hypothesis: The HOOS, JR would demonstrate a notable ceiling effect, but by augmenting the HOOS, JR with additional HOOS questions, a responsive PRO platform could be created. Study Design: Cohort study (diagnosis); Level of evidence, 2. Methods: Using preoperative and postoperative HOOS responses from a sample of 304 patients undergoing periacetabular osteotomy (PAO), additional items were identified to augment the HOOS, JR. The psychometric properties of a newly created PRO tool (HOOSglobal) were then compared with the HOOS, JR and other PRO instruments developed for patients with hip OA and/or undergoing THA. Results: By augmenting the HOOS, JR with 2 additional questions, the HOOSglobal was more responsive than all other included PRO tools and had significantly fewer maximum postoperative scores than the HOOS, JR ( P < .0001), HOOS–Physical Function Short form ( P < .0001), Western Ontario and McMaster Universities Osteoarthritis Index ( P = .02), University of California, Los Angeles activity scale ( P = .0002), and modified Harris Hip Score ( P = .04). The postoperative HOOSglobal score threshold associated with patients achieving the patient acceptable symptom state (PASS) was 62.5. Conclusion: The HOOSglobal is a valid and responsive PRO tool after PAO and may potentially provide the orthopaedic community with a PRO platform to be used across hip-related subspecialties. For patients undergoing PAO, a postoperative HOOSglobal score ≥62.5 was associated with patients achieving the PASS.

scholarly journals Patient-reported outcome measures in the recovery of adults hospitalised with community-acquired pneumonia: a systematic review

2019 ◽  
Vol 53 (3) ◽  
pp. 1802165 ◽  
Author(s):  
Harry J. Pick ◽  
Charlotte E. Bolton ◽  
Wei Shen Lim ◽  
Tricia M. McKeever
Keyword(s):  
Systematic Review ◽  
Outcome Measures ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Community Acquired Pneumonia ◽  
Assessment Tools ◽  
Post Discharge ◽  
Wide Range ◽  
Patient Reported ◽  
Prisma Statement

Symptomatic and functional recovery are important patient-reported outcome measures (PROMs) in community-acquired pneumonia (CAP) that are increasingly used as trial end-points. This systematic review summarises the literature on PROMs in CAP.Comprehensive searches in accordance with the PRISMA statement were conducted to March 2017. Eligible studies included adults discharged from hospital following confirmed CAP and reporting PROMs.15 studies (n=5644 patients) were included; most were of moderate quality. Studies used a wide range of PROMs and assessment tools. At 4–6 weeks post-discharge, the commonest symptom reported was fatigue (45.0–72.6% of patients, three studies), followed by cough (35.3–69.7%) and dyspnoea (34.2–67.1%); corresponding values from studies restricted by age <65 years (two studies) were lower: fatigue 12.1–25.7%, cough 19.9–31.9% and dyspnoea 16.8–27.5%. Functional impairment 4 weeks post-discharge was reported in 18–51% of patients (two studies), while median time to return to normal activities was between 15 and 28 days (three studies).Substantial morbidity is reported by patients up to 6 weeks post-discharge. There is weak methodological consistency across existing studies. A core set of PROMs for use in future studies is suggested.

P1453THE DEVELOPMENT OF A NEW PATIENT-REPORTED OUTCOME MEASURE TO EVALUATE THE QUALITY OF DIALYSIS THERAPY

2020 ◽  
Vol 35 (Supplement_3) ◽  
Author(s):  
Ikuto Masakane ◽  
Minoru Ito
Keyword(s):  
Mental Health ◽  
Life Satisfaction ◽  
Physical Symptoms ◽  
Patient Reported Outcome ◽  
Dialysis Therapy ◽  
Group 4 ◽  
Patient Reported ◽  
Group 3 ◽  
Group 1

Abstract Background and Aims There is a growing interest in Patient-Reported Outcome Measures (PROMs) as evaluation tools of medical care globally, including dialysis therapy. We developed our original PROM for patients undergoing maintenance hemodialysis (MHD), which was named the Ai-POD (Ai means love in Japanese, POD stands for Patients Oriented Dialysis). The Ai-POD is composed of 20 items relating to physical symptoms (joint pain, itching, frustration, weakness, shortness of breath, constipation, difficulty getting to sleep, asleep condition), complaints during dialysis therapy (pain of cannulation, headache, drop of blood-pressure, leg crumps, fatigue after dialysis session), dietary conditions (appetite, food enjoyment, sore or dry mouth), mental health (depressive feeling, life enjoyment) and comprehensive life satisfaction. All items are rated on a Likert scale from 0 (best) to 4 (worst) except mental health. The mental health questions are yes-no closed questions converting 0 (excellent) or 4 (bad). The sum of all 20 components ranges from 0 to 80, denoting increasing of severity. We have been collecting the data of Ai -POD from all patients in our facilities for over ten years. We examined the associations between the score of Ai-POD and prospective mortality in our patients undergoing hemodialysis therapy to assess the usefulness of the Ai-POD score. Method Three hundred ninety-six patients (262 men, 134 women; age 66 ± 12years) on MHD therapy for at least three months were evaluated with Ai-POD in October 2013 and followed up for three years. We categorized the patients into the four groups according to the quartile of the Ai-POD score and compared anthropometric measurements and laboratory measurements among the groups. The four groups are as below: Grop1 (Score: 0 ∼ 10), Group 2 (11 ∼18), Group 3 (19 ∼29), and Group 4 (29 ∼). A Cox regression analysis was used to evaluate the association between the severity of the Ai-POD score and mortality risk adjusting with several factors. Kaplan-Meire analysis and Log-rank test assessed the mortality rate for comparison among the four groups. Results The average of Ai-POD score of all patients was 19.6 ± 11.7, following a normal distribution. Among the four quartile groups, we found no differences in age, dialysis vintage and diabetes ratio, but found the statistic difference in gender ratio and serum-albumin. Compared with Group 1, the multivariable-adjusted hazard ratio for mortality was significantly increased to 2.51 (95% CI 1.03 – 7.02) and 3.00 (95% CI 1.25 – 8.46) in Group 3 and Group 4, respectively. Kaplan-Meier analysis showed higher mortality in Group 3 and 4 (16.7% and 19.1% respectively) compared with Group 1 and 2 (5.6% and 6.5% respectively) significantly (p=0.0033) (Figure). Sub-analysis with each Ai-POD item indicated that frustration, appetite, food enjoyment, and overall life satisfaction were strong independent predictors of prognosis. Conclusion The score of PROM is a significant prognostic factor, suggesting the Ai-POD score could be one of the useful tools to estimate the quality of dialysis therapy. The strategies to improve the score in each item could enhance the quality of dialysis therapy.

Patient-Reported Outcomes for Acquired Dysarthria

2012 ◽  
Vol 22 (4) ◽  
pp. 152-159 ◽  
Author(s):  
Neila J. Donovan
Keyword(s):  
Treatment Outcome ◽  
Patient Reported Outcomes ◽  
State Of The Art ◽  
Patient Reported Outcome ◽  
Speech Disorders ◽  
Motor Speech ◽  
Motor Speech Disorders ◽  
Patient’S Perspective ◽  
Standard Assessment ◽  
Patient Reported

The purpose of this article is to review the state of the art in patient-reported outcome (PRO) development for acquired dysarthria for clinicians and researchers interested in adding the patient's perspective to the information they garner from their standard assessment repertoire. In particular, the author summarizes what PROs are available at this time for researchers and clinicians treating individuals with acquired motor speech disorders. At this time, for the motor speech population, few valid and reliable PRO measures exist, and those that do are in various stages of development. Although each PRO measures a different aspect of treatment outcome, each offers an alternative to having no input from the patient's perspective at all.

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