Creation of a Tool to Evaluate Supportive Care: Experiences from Socioesthetics

2021 ◽  
Author(s):  
Damien Giacchero ◽  
Guillaume Buiret ◽  
Cecile Grosjean ◽  
CHARLES TAIEB ◽  
Mahasti Saghatchian ◽  
...  
Keyword(s):  
Supportive Care ◽  
External Validation ◽  
Care Patient ◽  
Patient Reported Outcome ◽  
Measurement Properties ◽  
Research Teams ◽  
Patient Reported ◽  
The Impact ◽  
Published Research

Abstract The absence of a specific tool to evaluate the impact of Supportive care in general and socioesthetics in particular as a rendered medical service is undoubtedly at the origin of the lack of published research based on scientific standards.In this context, we developed one supportive-care patient-reported outcome [PRO] using the multistep methods following COSMIN recommendations. Its construction followed all recommended steps: elaboration of the questionnaire, measurement properties of the questionnaire, internal and external validation, test-retest validation and translation, cross-cultural adaptation and cognitive debriefing. In total, our questionnaire includes11 items. It is scored by adding each VAS, making it range from 0 to 110, with a higher benefit when the score is higher. The Cronbach’s α coefficient is 0.88 for the entire questionnaire. The questionnaire thus constructed is a reflection of the patient's feelings, and it is quite natural that the name The “patient centricity questionnaire” (PCQ) was retained and validated by the Scientific Committee. The PCQ correlated negatively and moderately with the PSS, positively and moderately with the mental dimension of the and poorly with the WB12, the physical dimension of the SF-12 and the satisfaction EVA. Constructed according to the recommendations, the PCQ meets the prerequisite for this type of questionnaire. Its short format (11 questions) and simplicity of use allow it to be used by a large number of people and provides an pragmatic answer by making available to research teams a simple, reliable, easy-to-use and validated tool. It makes possible randomized studies to prove the impact on quality of life of the Supportive care in general and socioesthetics" in particular.

scholarly journals Quality of Life After Orthognathic Surgery in Patients with Cleft: An Overview of Available Patient-Reported Outcome Measures

2021 ◽  
pp. 105566562110671
Author(s):  
Roan L. M. Ploumen ◽  
Samuel H. Willemse ◽  
Ronald E. G. Jonkman ◽  
Jitske W. Nolte ◽  
Alfred G. Becking
Keyword(s):  
Quality Of Life ◽  
Outcome Measures ◽  
Orthognathic Surgery ◽  
Quality Criteria ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Measurement Properties ◽  
Patient Reported ◽  
The Impact

Measuring the impact of orthognathic surgery on quality of life is of significant importance in patients with cleft deformities. Standardized tools such as patient-reported outcome measures (PROMs) are needed to fully comprehend patients’ needs and perceptions. Therefore, the availability of reliable, valid, and comprehensive questionnaires for patients is essential. The aim of this study is to identify PROMs measuring the impact of orthognathic surgery on quality of life in patients with cleft deformities and to evaluate the identified PROMs. A systematic search of the literature was performed according to the preferred reporting items for systematic reviews and meta-analysis guidelines. All validated PROMs, regarding the impact of orthognathic surgery on quality of life in patients with cleft deformities, were identified and assessed according to the quality criteria proposed for measurement properties of health status questionnaires. An electronic search yielded 577 articles. After a full-text review of 87 articles, 4 articles met the inclusion criteria, comprising 58 PROMs. Of these 58 PROMs, 1 PROM (the CLEFT-Q) has been validated to measure the impact of orthognathic surgery on patients with a facial cleft. Evaluation of methodological quality of the included articles and assessment of the measurement properties of the CLEFT-Q show that the CLEFT-Q scores relatively good for all available measurement properties, making it suitable for immediate use. The CLEFT-Q was found to be the only valid instrument so far to measure the impact of orthognathic surgery on the quality of life in patients with cleft deformities.

scholarly journals Dental patient reported outcome and oral health-related quality of life measures: protocol for a systematic evidence map of reviews

BDJ Open ◽  
2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Tara Beecher ◽  
Patrice James ◽  
John Browne ◽  
Zelda Di Blasi ◽  
Máiréad Harding ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Oral Health ◽  
Real World ◽  
Grey Literature ◽  
Patient Reported Outcome ◽  
Measurement Properties ◽  
Dental Patient ◽  
Patient Reported ◽  
The Impact

Abstract Aims This research synthesis protocol addresses the question: what is the evidence concerning measurement properties of dental patient reported outcome measures (dPROMs), and regarding the real-world value of dPROMs, and where are the gaps in this evidence? Evidence mapping will systematically examine reviews of quantitative dPROMs used to assess the impact of oral health on the quality of life of dental patients and research participants. Evidence gaps where future research or systematic reviews are required will be identified. Materials and methods This protocol accords with the PRISMA-P guideline. Open Science Framework Registration 10.17605/OSF.IO/RZD3N. Biomedical and grey literature databases will be searched, adapting the same search strategy. Published or unpublished reviews evaluating any dPROM will be considered for inclusion. There will be no restriction by date, setting, or language. AMSTAR2 and ROBIS will evaluate risk of bias. Psychometric criteria will be adapted from COSMIN. Data will be summarised separately for specific populations and conditions. Discussion The findings will enable clinicians and researchers to identify methodologically robust dPROMs, appropriate for use with relevant populations and conditions. Implications for real-world practice and research will be discussed.

scholarly journals Measurement properties of patient-reported outcome measures (PROMs) in hyperhidrosis: a systematic review

2021 ◽  
Author(s):  
Michaela Gabes ◽  
Helge Knüttel ◽  
Gesina Kann ◽  
Christina Tischer ◽  
Christian J. Apfelbacher
Keyword(s):  
Systematic Review ◽  
Clinical Trials ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Measurement Properties ◽  
High Quality ◽  
High Quality Evidence ◽  
Patient Reported ◽  
Quality Evidence

Abstract Purpose To critically appraise, compare and summarize the quality of all existing PROMs that have been validated in hyperhidrosis to at least some extend by applying the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) methodology. Thereby, we aim to give a recommendation for the use of PROMs in future clinical trials in hyperhidrosis. Methods We considered studies evaluating, describing or comparing measurement properties of PROMs as eligible. A systematic literature search in three big databases (MEDLINE, EMBASE and Web of Science) was performed. We assessed the methodological quality of each included study using the COSMIN Risk of Bias checklist. Furthermore, we applied predefined quality criteria for good measurement properties and finally, graded the quality of the evidence. Results Twenty-four articles reporting on 13 patient-reported outcome measures were included. Three instruments can be further recommended for use. They showed evidence for sufficient content validity and moderate- to high-quality evidence for sufficient internal consistency. The methodological assessment showed existing evidence gaps for eight other PROMs, which therefore require further validation studies to make an adequate decision on their recommendation. The Hyperhidrosis Disease Severity Measure-Axillary (HDSM-Ax) and the short-form health survey with 36 items (SF-36) were the only questionnaires not recommended for use in patients with hyperhidrosis due to moderate- to high-quality evidence for insufficient measurement properties. Conclusion Three PROMs, the Hyperhidrosis Quality of Life Index (HidroQoL), the Hyperhidrosis Questionnaire (HQ) and the Sweating Cognitions Inventory (SCI), can be recommended for use in future clinical trials in hyperhidrosis. Results obtained with these three instruments can be seen as trustworthy. Nevertheless, further validation of all three PROMs is desirable. Systematic review registration PROSPERO CRD42020170247

scholarly journals Patient-Reported Outcome Measures for Post-mastectomy Breast Reconstruction: A Systematic Review of Development and Measurement Properties

2020 ◽  
Vol 28 (1) ◽  
pp. 386-404 ◽  
Author(s):  
C. F. Davies ◽  
R. Macefield ◽  
K. Avery ◽  
J. M. Blazeby ◽  
S. Potter
Keyword(s):  
Systematic Review ◽  
Breast Reconstruction ◽  
Content Validity ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Measurement Properties ◽  
Future Studies ◽  
Patient Reported ◽  
Eortc Qlq

Abstract Background Breast reconstruction (BR) is performed to improve outcomes for patients undergoing mastectomy. A recently developed core outcome set for BR includes six patient-reported outcomes that should be measured and reported in all future studies. It is vital that any instrument used to measure these outcomes as part of a core measurement set be robustly developed and validated so data are reliable and accurate. The aim of this systematic review is to evaluate the development and measurement properties of existing BR patient-reported outcome measures (PROMs) to inform instrument selection for future studies. Methods A PRISMA-compliant systematic review of development and validation studies of BR PROMs was conducted to assess their measurement properties. PROMs with adequate content validity were assessed using three steps: (1) the methodological quality of each identified study was assessed using the COSMIN Risk of Bias checklist; (2) criteria were applied for assessing good measurement properties; and (3) evidence was summarized and the quality of evidence assessed using a modified GRADE approach. Results Fourteen articles reported the development and measurement properties of six PROMs. Of these, only three (BREAST-Q, BRECON-31, and EORTC QLQ-BRECON-23) were considered to have adequate content validity and proceeded to full evaluation. This showed that all three PROMs had been robustly developed and validated and demonstrated adequate quality. Conclusions BREAST-Q, BRECON-31, and EORTC QLQ-BRECON-23 have been well-developed and demonstrate adequate measurement properties. Work with key stakeholders is now needed to generate consensus regarding which PROM should be recommended for inclusion in a core measurement set.

scholarly journals Systematic review: measurement properties of patient-reported outcome measures evaluated with childhood brain tumor survivors or other acquired brain injury

2019 ◽  
Vol 7 (3) ◽  
pp. 277-287
Author(s):  
Kim S Bull ◽  
Samantha Hornsey ◽  
Colin R Kennedy ◽  
Anne-Sophie E Darlington ◽  
Martha A Grootenhuis ◽  
...  
Keyword(s):  
Brain Tumor ◽  
Acquired Brain Injury ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Measurement Properties ◽  
Conflicting Evidence ◽  
Reliable Assessment ◽  
Patient Reported ◽  
Responsiveness To Change

Abstract Background Survivors of childhood brain tumors or other acquired brain injury (ABI) are at risk of poor health-related quality of life (HRQoL); its valid and reliable assessment is essential to evaluate the effect of their illness on their lives. The aim of this review was to critically appraise psychometric properties of patient-reported outcome measures (PROMs) of HRQoL for these children, to be able to make informed decisions about the most suitable PROM for use in clinical practice. Methods We searched MEDLINE, EMBASE, and PsycINFO for studies evaluating measurement properties of HRQoL PROMs in children treated for brain tumors or other ABI. Methodological quality of relevant studies was evaluated using the consensus-based standards for the selection of health status measurement instruments checklist. Results Eight papers reported measurement properties of 4 questionnaires: Health Utilities Index (HUI), PedsQL Core and Brain Tumor Modules, and Child and Family Follow-up Survey (CFFS). Only the CFFS had evidence of content and structural validity. It also demonstrated good internal consistency, whereas both PedsQL modules had conflicting evidence regarding this. Conflicting evidence regarding test-retest reliability was reported for the HUI and PedsQL Core Module only. Evidence of measurement error/precision was favorable for HUI and CFFS and absent for both PedsQL modules. All 4 PROMs had some evidence of construct validity/hypothesis testing but no evidence of responsiveness to change. Conclusions Valid and reliable assessment is essential to evaluate impact of ABI on young lives. However, measurement properties of PROMs evaluating HRQoL appropriate for this population require further evaluation, specifically construct validity, internal consistency, and responsiveness to change.

scholarly journals A systematic review of patient-reported outcome measures in paediatric otolaryngology

2017 ◽  
Vol 132 (1) ◽  
pp. 2-7 ◽  
Author(s):  
J Powell ◽  
S Powell ◽  
A Robson
Keyword(s):  
Outcome Measures ◽  
English Language ◽  
Health Assessment ◽  
Paediatric Population ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Specific Patient ◽  
Patient Reported ◽  
The Impact

AbstractBackground:Recently, there has been increased emphasis on the development and application of patient-reported outcome measures. This drive to assess the impact of illness or interventions, from the patient's perspective, has resulted in a greater number of available questionnaires. The importance of selecting an appropriate patient-reported outcome measure is specifically emphasised in the paediatric population. The literature on patient-reported outcome measures used in paediatric otolaryngology was reviewed.Methods:A comprehensive literature search was conducted using the databases Medline, Embase, Cumulative Index to Nursing and Allied Health Literature, and PsycInfo, using the terms: ‘health assessment questionnaire’, ‘structured questionnaire’, ‘questionnaire’, ‘patient reported outcome measures’, ‘PROM’, ‘quality of life’ or ‘survey’, and ‘children’ or ‘otolaryngology’. The search was limited to English-language articles published between 1996 and 2016.Results:The search yielded 656 articles, of which 63 were considered relevant. This included general paediatric patient-reported outcome measures applied to otolaryngology, and paediatric otolaryngology disease-specific patient-reported outcome measures.Conclusion:A large collection of patient-reported outcome measures are described in the paediatric otolaryngology literature. Greater standardisation of the patient-reported outcome measures used in paediatric otolaryngology would assist in pooling of data and increase the validation of tools used.

scholarly journals Patient-reported outcome measures following revision knee replacement: a review of PROM instrument utilisation and measurement properties using the COSMIN checklist

BMJ Open ◽  
2021 ◽  
Vol 11 (10) ◽  
pp. e046169
Author(s):  
Shiraz A Sabah ◽  
Elizabeth A Hedge ◽  
Simon G F Abram ◽  
Abtin Alvand ◽  
Andrew J Price ◽  
...  
Keyword(s):  
Health Status ◽  
Knee Joint ◽  
Joint Replacement ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Measurement Properties ◽  
Knee Joint Replacement ◽  
Cosmin Checklist ◽  
Patient Reported

ObjectivesTo identify: (1) patient-reported outcome measures (PROMs) used to evaluate symptoms, health status or quality of life following discretionary revision (or re-revision) knee joint replacement, and (2) validated joint-specific PROMs, their measurement properties and quality of evidence.Design(1) Scoping review; (2) systematic review following the COnsensus-based Standards for selection of health status Measurement INstruments (COSMIN) checklist.Data sourcesMEDLINE, Embase, AMED and PsycINFO were searched from inception to 1 July 2020 using the Oxford PROM filter unlimited by publication date or language.Eligibility criteria for selecting studiesStudies reporting on the development, validation or outcome of a joint-specific PROM for revision knee joint replacement were included.Results51 studies reported PROM outcomes using eight joint-specific PROMs. 27 out of 51 studies (52.9%) were published within the last 5 years. PROM development was rated ‘inadequate’ for each of the eight PROMs studied. Validation studies were available for only three joint-specific PROMs: Knee Injury and Osteoarthritis Outcome Score (KOOS), Lower Extremity Activity Scale (LEAS) and Western Ontario and McMaster Universities Arthritis Index (WOMAC). 25 out of 27 (92.6%) measurement properties were rated insufficient, indeterminate or not assessed. The quality of supporting evidence was mostly low or very low. Each of the validated PROMs was rated ‘B’ (potential for recommendation but require further evaluation).ConclusionJoint-specific PROMs are increasingly used to report outcomes following revision knee joint replacement, but these instruments have insufficient evidence for their validity. Future research should be directed toward understanding the measurement properties of these instruments in order to inform clinical trials and observational studies evaluating the outcomes from joint-specific PROMs.

scholarly journals Patient-Reported Quality of Supportive Care Among Patients With Colorectal Cancer in the Veterans Affairs Health Care System

2014 ◽  
Vol 32 (8) ◽  
pp. 809-815 ◽  
Author(s):  
Michelle van Ryn ◽  
Sean M. Phelan ◽  
Neeraj K. Arora ◽  
David A. Haggstrom ◽  
George L. Jackson ◽  
...  
Keyword(s):  
Colorectal Cancer ◽  
Supportive Care ◽  
Cancer Care ◽  
Quality Measurement ◽  
Veterans Affairs ◽  
Health Administration ◽  
Patient Centered ◽  
Patient Reported ◽  
The Impact

Purpose High-quality supportive care is an essential component of comprehensive cancer care. We implemented a patient-centered quality of cancer care survey to examine and identify predictors of quality of supportive care for bowel problems, pain, fatigue, depression, and other symptoms among 1,109 patients with colorectal cancer. Patients and Methods Patients with new diagnosis of colorectal cancer at any Veterans Health Administration medical center nationwide in 2008 were ascertained through the Veterans Affairs Central Cancer Registry and sent questionnaires assessing a variety of aspects of patient-centered cancer care. We received questionnaires from 63% of eligible patients (N = 1,109). Descriptive analyses characterizing patient experiences with supportive care and binary logistic regression models were used to examine predictors of receipt of help wanted for each of the five symptom categories. Results There were significant gaps in patient-centered quality of supportive care, beginning with symptom assessment. In multivariable modeling, the impact of clinical factors and patient race on odds of receiving wanted help varied by symptom. Coordination of care quality predicted receipt of wanted help for all symptoms, independent of patient demographic or clinical characteristics. Conclusion This study revealed substantial gaps in patient-centered quality of care, difficult to characterize through quality measurement relying on medical record review alone. It established the feasibility of collecting patient-reported quality measures. Improving quality measurement of supportive care and implementing patient-reported outcomes in quality-measurement systems are high priorities for improving the processes and outcomes of care for patients with cancer.

Patient-Reported Outcome Measures to Inform Care of People With Dementia—A Systematic Scoping Review

2020 ◽  
Author(s):  
Darshini R Ayton ◽  
Madeleine L Gardam ◽  
Elizabeth K Pritchard ◽  
Rasa Ruseckaite ◽  
Joanne Ryan ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Outcome Measures ◽  
Scoping Review ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
System Level ◽  
Patient’S Perspective ◽  
Patient Reported ◽  
The Impact

Abstract Background and Objectives Patient-reported outcome measures (PROMs) captures the patient’s perspective regarding quality of life, daily functioning, symptom severity, and overall health, and how these may be impacted by health care or other interventions. PROMs are used in clinical quality registries (CQRs) for a number of diseases to assess the patient’s perspective of the impact of clinical care on quality-of-life. This scoping review aimed to identify dementia-specific PROMs, determine how the PROMs are being used, and whether they are used within dementia registries. Research Design and Methods Three electronic databases were searched using Medical Subject Heading terms for dementia, quality of life, and patient-reported outcomes. Data were extracted on the PROMs used and the methods and mode of administering the PROM. Results Seven dementia-specific PROMs were identified, however none were used in a dementia registry. All the PROMs were used at the patient level to identify patient needs and health service impacts. Three PROMs were also used at a system level to examine difference in care models. The majority of the PROMs were administered via a researcher or clinician and were predominantly completed by a proxy. Discussion and Implications PROMs provide an opportunity for a patient with dementia to share experiences and perspectives of care. A number of dementia-specific PROMs exist, yet none are used in dementia registries and the majority of studies utilize PROMs via a proxy. The use of PROM for patients with dementia, particularly in the context of dementia registries, requires further exploration and consideration.

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