Urethroplasty and Quality of Life: Psychometric Validation of a Dutch Version of the Urethral Stricture Surgery Patient Reported Outcome Measures

2017 ◽  
Vol 99 (4) ◽  
pp. 460-466 ◽  
Author(s):  
Wesley Verla ◽  
Marjan Waterloos ◽  
Nicolaas Lumen
Keyword(s):  
Quality Of Life ◽  
Outcome Measures ◽  
Urethral Stricture ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Psychometric Validation ◽  
Dutch Version ◽  
Surgery Patient ◽  
Patient Reported

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

A Review of Validated Quality-of-Life Patient-Reported Outcome Measures in Pediatric Plastic Surgery

2018 ◽  
Vol 142 (5) ◽  
pp. 694e-707e
Author(s):  
Janine M. Roller ◽  
Rebecca J. M. Courtemanche ◽  
Douglas J. Courtemanche
Keyword(s):  
Quality Of Life ◽  
Plastic Surgery ◽  
Outcome Measures ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Patient Reported

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.

scholarly journals Patient-Reported Outcome Measures (PROMs) in Pediatric Non-Malignant Hematology: A Systematic Review

Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 2180-2180
Author(s):  
Robert J Klaassen ◽  
Julia Y. Kinahan ◽  
Johann M. I. Graham ◽  
Yamilée V. Hébert ◽  
Katie O'Hearn
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Outcome Measures ◽  
Well Being ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Clinical Environment ◽  
Patient Reported ◽  
Disease Specific

Introduction: Patient reported outcome measures (PROMs) are questionnaires completed by patients or caregivers without interpretation by healthcare professionals. As such, they allow patient concerns about a variety of healthcare issues to be identified and addressed in an efficient and actionable manner. PROMs can be generic, with questions relevant to multiple disease groups or disease-specific, with questions targeting the symptoms, limitations, and feelings common to the disease group. This systematic review identified generic and disease-specific PROMs for monitoring symptoms and health-related quality of life (HRQoL) in 4 pediatric non-malignant hematologic disease groups: thalassemia, hemophilia, immune thrombocytopenia (ITP), and sickle cell disease (SCD). Methods: Databases (MEDLINE, Embase, HaPI, CINAHL, and PsycTESTS) were searched to identify publications that either validated or used PROMs as an outcome measure in the four disease groups. Articles were excluded when <30% of the population was pediatric (<18 years), when the study setting was inpatient, when the tool had not been validated, or when the article did not report the use of a PROM for monitoring symptoms or HRQoL. Notably, hemophilia records published prior to 2016 were not screened as a systematic review by Limperg et al. (2017) identified validated PROMs in the pediatric hemophilia population and was used to include relevant articles. Results: The search identified 1176 unique records, with 902 records remaining for title and abstract screening after removal of 274 hemophilia articles published prior to the systematic review. Including hemophilia records identified from the 2017 review, 217 articles met inclusion criteria incorporating 107 generic and 20 disease-specific PROMs. Of the generic tools, the most frequent categories identified include psychological well-being (26 tools), general quality of life (19 tools), and family impact (19 tools). The most frequently used tool was the PedsQL 4.0 Generic Core Scales (66 studies), appearing 33 times in SCD, 25 times in thalassemia, 5 times in ITP, and 3 times in hemophilia. Other commonly used generic tools include the Short Form Health Survey, Child Health Questionnaire, PROMIS Health Measures, and Child Behaviour Checklist (Table). Disease-specific tools identified in the review include the PedsQL SCD Module, Kids ITP Tool, Haemo-QoL, CHO-KLAT, and TranQol (Table). In addition, 10 studies reported on pain diaries and 9 of these studies were SCD focused, the other being hemophilia focused. Conclusion: This systematic review identified several generic and disease-specific PROMs that have been used in pediatric non-malignant hematology. Although generic tools have been used more frequently, many disease-specific tools have been validated and are available for use in the clinical environment. We are currently conducting focus groups with patients, parents, and clinicians to determine the optimal choice of tools for monitoring symptoms and HRQoL in the pediatric non-malignant clinical environment. Disclosures No relevant conflicts of interest to declare.

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