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 Published or unpublished reviews evaluating any dPROM will be considered for inclusion.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 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.

Patients With a History of Oronasal Fistula Repair Exhibit Lower Oral Health Measured With Patient-Centric Outcomes Measures

2020 ◽  
pp. 105566562098133
Author(s):  
Alyssa Fritz ◽  
Diana S. Jodeh ◽  
Fatima Qamar ◽  
James J. Cray ◽  
S. Alex Rottgers
Keyword(s):  
Quality Of Life ◽  
Oral Health ◽  
Cleft Palate ◽  
Fistula Repair ◽  
Old Patients ◽  
Oronasal Fistula ◽  
Patient Reported ◽  
History Of ◽  
The Impact

Introduction: Oronasal fistulae following palatoplasty may affect patients’ quality of life by impacting their ability to eat, speak, and maintain oral hygiene. We aimed to quantify the impact of previous oronasal fistula repair on patients’ quality of life using patient-reported outcome psychometric tools. Methods: A cross-sectional study of 8- to 9-year-old patients with cleft palate and/or lip was completed. Patients who had a cleft team clinic between September 2018 and August 2019 were recruited. Participants were divided into 2 groups (no fistula, prior fistula repair). Differences in the individual CLEFT-Q and Child Oral Health Impact Profile-Short Form 19 (COHIP-SF 19) Oral Health scores between the 2 groups were evaluated using a multivariate analysis controlling for Veau classification and syndromic diagnosis. Results: Sixty patients with a history of cleft palate were included. Forty-two (70%) patients had an associated cleft lip. Thirty-two (53.3%) patients had no history of fistula and 28 (46.7%) patients had undergone a fistula repair. CLEFT-Q Dental, Jaw, and Speech Function were all higher in patients without a history of a fistula repair; however, none of these differences were statistically significant. The COHIP-SF 19 Oral Health score demonstrated a significantly lower score in the fistula group, indicating poorer oral health ( P = .05). Conclusions: One would expect that successful repair of a fistula would result in improved function and patient satisfaction, but the consistent trend toward lower CLEFT-Q scores and significantly increased COHIP-SF 19 Oral Health scores in our study group suggests that residual effects linger and that the morbidity of a fistula may not be completely treated with a secondary correction.

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 Prognostic value of patient-reported quality of life for survival in oesophagogastric cancer: analysis from the population-based POCOP study

2021 ◽  
Author(s):  
J. J. van Kleef ◽  
W. P. M. Dijksterhuis ◽  
H. G. van den Boorn ◽  
M. Prins ◽  
R. H. A. Verhoeven ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Real World ◽  
Prognostic Value ◽  
Advanced Disease ◽  
Population Based ◽  
Summary Score ◽  
Patient Reported ◽  
The Impact ◽  
Oesophagogastric Cancer

Abstract Background Accumulating evidence of trials demonstrates that patient-reported health-related quality of life (HRQoL) at diagnosis is prognostic for overall survival (OS) in oesophagogastric cancer. However, real-world data are lacking. Moreover, differences in disease stages and tumour-specific symptoms are usually not taken into consideration. The aim of this population-based study was to assess the prognostic value of HRQoL, including tumour-specific scales, on OS in patients with potentially curable and advanced oesophagogastric cancer. Methods Data were derived from the Netherlands Cancer Registry and the patient reported outcome registry (POCOP). Patients included in POCOP between 2016 and 2018 were stratified for potentially curable (cT1-4aNallM0) or advanced (cT4b or cM1) disease. HRQoL was measured with the EORTC QLQ-C30 and the tumour-specific OG25 module. Cox proportional hazards models assessed the impact of HRQoL, sociodemographic and clinical factors (including treatment) on OS. Results In total, 924 patients were included. Median OS was 38.9 months in potentially curable patients (n = 795) and 10.6 months in patients with advanced disease (n = 129). Global Health Status was independently associated with OS in potentially curable patients (HR 0.89, 99%CI 0.82–0.97), together with several other HRQoL items: appetite loss, dysphagia, eating restrictions, odynophagia, and body image. In advanced disease, the Summary Score was the strongest independent prognostic factor (HR 0.75, 99%CI 0.59–0.94), followed by fatigue, pain, insomnia and role functioning. Conclusion In a real-world setting, HRQoL was prognostic for OS in patients with potentially curable and advanced oesophagogastric cancer. Several HRQoL domains, including the Summary Score and several OG25 items, could be used to develop or update prognostic models.

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.

scholarly journals Feasibility Study Protocol: Investigating The Impact of Bleed Events On Anticoagulated Patients Diagnosed With Atrial Fibrillation Using Patient Reported Outcome Measures

2021 ◽  
Author(s):  
Hayley A Hutchings ◽  
Kirsty Lanyon ◽  
Steven Lister ◽  
Raza Alikhan ◽  
Claire Fegan ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Atrial Fibrillation ◽  
Outcome Measures ◽  
Major Bleeding ◽  
Structured Interview ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Patient Reported ◽  
The Impact

Abstract BackgroundAtrial fibrillation (AF) is the most common cardiac arrhythmia. Oral anticoagulation therapies (OATs) are often prescribed in conjunction with medications to restore normal heart rate rhythm which can limit the risk of an AF-related stroke and systemic thromboembolism. However, they are associated with the serious side effect of bleeding. Both clinically relevant non-major bleeding (CRNMB) and major bleeding while anticoagulated are believed to have a significant impact on patient quality of life (QoL). There is currently limited research into the effect bleeding has on QoL. The aim of this study is to evaluate the feasibility of identifying and recruiting patients diagnosed with AF, who are taking OATs and have recently experienced a bleed and collecting information on their QoL.MethodsWe will recruit a minimum of 50 patients to this cross sectional, observational study. We will recruit from general practices, secondary care and through an online AF forum. We will ask participants to complete three validated patient-reported outcome measures (PROMs: EQ5D, AFEQT and PACT-Q), approximately four weeks following a bleed and again 3 months later. We will randomly select a subset of 10 participants (of those who agree to be interviewed) to undergo a structured interview with a member of the research team to explore the impact of bleeding on their QoL and to gain feedback on the three PROMs used. We will undertake a descriptive analysis of the PROMs and demographic data. We will analyse the qualitative interviews thematically to identify key themes. DiscussionWe aim to establish if it is possible to recruit patients and use PROMs to collect information regarding how patient QoL is affected when they experience either a CRNMB or major bleed, while taking OATs for the management of AF. We will also explore the appropriateness or otherwise of the three identified PROMs for assessing quality of life following a bleed. Trial registrationThe trial has been adopted onto the NIHR Portfolio (I.D. #47771) and registered with www.ClinicalTrials.gov (#NCT04921176) retrospectively registered in June 2021.

scholarly journals Quality of Life-related “Patient-reported Outcome Measures” in Oral Submucous Fibrosis Patients

2018 ◽  
Vol 19 (3) ◽  
pp. 331-338 ◽  
Author(s):  
Monal Yuwanati ◽  
Rima S Gondivkar
Keyword(s):  
Quality Of Life ◽  
Outcome Measures ◽  
Functional Impairment ◽  
Oral Submucous Fibrosis ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Patient Reported ◽  
Submucous Fibrosis ◽  
The Impact

ABSTRACT Aim The aim of this study was to explore the patients’ perspectives about the impact of oral submucous fibrosis (OSF) on life quality. Materials and methods Thirty clinically diagnosed OSF patients with a wide degree of disease severity and diverse range of sociodemographic profile were included in this study. Fourteen participants were interviewed and four focus group discussions were conducted in nonclinical settings. The audio recordings were anonymized, transcribed, and translated in English from Marathi language. Data were analyzed using an in-depth narrative thematic analysis method. Results Four main themes evolved from the interviews: (1) discomfort and functional impairment; (2) psychological wellness; (3) physical wellness, and (4) social wellness. Majority of the participants discussed about discomfort and functional impairment. Participants also reported greater impact of OSF on psychological and social wellness. Conclusion This study demonstrated the impact of OSF on different aspects of participant’s life. “Discomfort and functional impairment” was noticed to be the most recognized theme by our participants. However, OSF also has impacts on other important domains, namely psychological, social, and physical wellness. Clinical significance The patient-reported outcome (PRO) measure (PROM) reflects an integral aspect of general health and well-being and thus can be used to elucidate the impact of OSF on the quality of life (QoL) of affected individuals. These patients’ perspectives should be taken into consideration along with thorough clinical examination to decide and effectively manage the overall health care needs of the OSF patients. How to cite this article Gondivkar SM, Bhowate RR, Gadbail AR, Sarode SC, Gondivkar RS, Yuwanati M, Patil S. Quality of Life-related “Patient-reported Outcome Measures” in Oral Submucous Fibrosis Patients. J Contemp Dent Pract 2018;19(3):331-338.

scholarly journals The Impact of Nail Psoriasis and Treatment on Quality of Life: A Systematic Review

2021 ◽  
pp. 1-7
Author(s):  
Claire R. Stewart ◽  
Leah Algu ◽  
Rakhshan Kamran ◽  
Cameron F. Leveille ◽  
Khizar Abid ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Outcome Measures ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Nail Psoriasis ◽  
Percent Improvement ◽  
Patient Reported ◽  
The Impact ◽  
Nail Involvement

At least 80% of patients with psoriasis will have nail involvement during their lifetimes. Understanding quality of life (QoL) impact of this condition and associated treatments is of utmost importance. Study objectives were to review the available literature describing patient-reported QoL outcomes in nail psoriasis and relationship with disease severity and treatment. A literature search was performed for English-language articles published prior to August 1, 2020. Articles were included in the review if primary data and validated patient-reported outcome measures assessing QoL were presented, and nail involvement was specifically examined. Fifteen studies were included in the final analysis. Patients with nail psoriasis had higher Psoriasis Area Severity Index and Dermatology Life Quality Index scores than those with psoriasis without nail involvement. The largest percent improvement in QoL score was associated with adalimumab. Studies investigating topicals, intralesionals, and systemic treatments were excluded since only biologic studies utilized validated patient-reported outcome measures. This review affirms that nail psoriasis is physically and emotionally distressing, warranting prompt treatment. Increased efforts are needed to address the impact of treatment on patient QoL using validated outcome measures that assess cosmetic, physical, and social problems.

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