Evaluation of a rehabilitation program from the perspective of children with disabilities and their caregivers in Uruguay

2021 ◽  
pp. 1-9
Author(s):  
Cecilia Durán ◽  
María del Carmen Abreu ◽  
Juan J. Dapueto
Keyword(s):  
Quality Of Life ◽  
Outcome Measures ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Categorical Variables ◽  
Family Impact ◽  
Continuous Variables ◽  
Post Intervention ◽  
Patient Reported

PURPOSE: The aim of the study was to evaluate the Assessment and Orientation Treatment Program for children and adolescents with disabilities treated at the Center Teletón Uruguay from the perspective of the patients and their parents based on several patient reported outcome measures: health related quality of life (HRQOL), treatment satisfaction, family impact, and emotional distress. METHODS: The sample consisted of all the 126 dyads of children/adolescents with ages ranging from 2 to 18 years and their primary caregivers who entered the program from April to October 2012. A set of instruments were filled out by children and parents before and six months after the program. T test for paired samples for continuous variables and McNemar's test for categorical variables were used to assess changes pre and post intervention. RESULTS: There was a high prevalence of depression and anxiety in the caregivers. In the second evaluation, improvements that were statistically significant only for the caregivers were observed in the HRQOL of children, adolescents and caregivers. CONCLUSIONS: The patient reported outcome measures used were effective in detecting changes in several areas of the quality of life of children observed by their caregivers and in their own quality of life after the intervention.

Patient Reported Outcome Measures of Health-Related Quality of Life and Asthenia after Thyroidectomy

2021 ◽  
Vol 264 ◽  
pp. 394-401
Author(s):  
Mary Kate Luddy ◽  
Rachel Vetter ◽  
Jessica Shank ◽  
Whitney Goldner ◽  
Anery Patel ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Outcome Measures ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Health Related Quality ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

scholarly journals A systematic review of patient-reported outcome measures (PROMs) in cystic fibrosis

BMJ Open ◽  
2020 ◽  
Vol 10 (10) ◽  
pp. e033867
Author(s):  
Irushi Ratnayake ◽  
Susannah Ahern ◽  
Rasa Ruseckaite
Keyword(s):  
Quality Of Life ◽  
Cystic Fibrosis ◽  
Outcome Measures ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Cochrane Library ◽  
Life Questionnaire ◽  
Health Measurement ◽  
Patient Reported

BackgroundTo determine patient-reported outcome measures (PROMs) which may be suitable for incorporation into the Australian Cystic Fibrosis Data Registry (ACFDR) by identifying PROMs administered in adult and paediatric cystic fibrosis (CF) populations in the last decade.MethodsWe searched MEDLINE, EMBASE, Scopus, CINAHL, PsycINFO and Cochrane Library databases for studies published between January 2009 and February 2019 describing the use of PROMs to measure health-related quality of life (HRQoL) in adult and paediatric patients with CF. Validation studies, observational studies and qualitative studies were included. The search was conducted on 13 February 2019. The COnsensus-based Standards for the selection of health Measurement INstruments Risk of Bias Checklist was used to assess the methodological quality of included studies.ResultsTwenty-seven different PROMs were identified. The most commonly used PROMs were designed specifically for CF. Equal numbers of studies were conducted on adult (32%, n=31), paediatric (35%, n=34) and both (27%, n=26) populations. No PROMs were used within a clinical registry setting previously. The two most widely used PROMs, the Cystic Fibrosis Questionnaire—Revised (CFQ-R) and the Cystic Fibrosis Quality of Life Questionnaire (CFQoL), demonstrated good psychometric properties and acceptability in English-speaking populations.DiscussionWe found that although PROMs are widely used in CF, there is a lack of reporting on the efficacy of methods and timepoints of administration. We identified the CFQ-R and CFQoL as the most suitable for incorporation in the ACFDR as they captured significant effects of CF on HRQoL and were reliable and valid in CF populations. These PROMs will be used in a further qualitative study assessing patients’ with CF and clinicians’ perspectives toward the acceptability and feasibility of incorporating a PROM in the ACFDR.PROSPERO registration numberCRD42019126931.

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.

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