scholarly journals Measuring Quality of Life in Carers of People With Dementia: Development and Psychometric Evaluation of Scales measuring the Impact of DEmentia on CARers (SIDECAR)

2019 ◽  
Author(s):  
Mike C Horton ◽  
Jan Oyebode ◽  
Linda Clare ◽  
Molly Megson ◽  
Leanne Shearsmith ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Outcome Measures ◽  
Convergent Validity ◽  
Psychometric Evaluation ◽  
Measurement Properties ◽  
For Profit ◽  
People With Dementia ◽  
New Instrument ◽  
The Impact

Abstract Background and Objectives A 2008 European consensus on research outcome measures in dementia care concluded that measurement of carer quality of life (QoL) was limited. Three systematic reviews (2012, 2017, and 2018) of dementia carer outcome measures found existing instruments wanting. In 2017, recommendations were published for developing reliable measurement tools of carers’ needs for research and clinical application. The aim of this study was to develop a new instrument to measure the QoL of dementia carers (family/friends). Methods Items were generated directly from carers following an inductive needs-led approach. Carers (n = 566) from 22 English and Welsh locations then completed the items and comparator measures at three time points. Rasch, factor, and psychometric (reliability, validity, responsiveness, and minimally important differences [MIDs]) analyses were undertaken. Results Following factor analysis, the pool of 70 items was refined to three independent scales: primary SIDECAR-D (direct impact of caring upon carer QOL, 18 items), secondary SIDECAR-I (indirect impact, 10 items), and SIDECAR-S (support and information, 11 items). All three scales satisfy Rasch model assumptions. SIDECAR-D, I, S psychometrics: reliability (internal ≥ .70; test–retest ≥ .85); convergent validity (as hypothesized); responsiveness (effect sizes: D: moderate; I and S: small); MIDs (D = 9/100, I = 10/100, S = 11/100). Discussion and Implications SIDECAR scales demonstrate robust measurement properties, meeting COSMIN quality standards for study design and psychometrics. SIDECAR provides a theoretically based needs-led QoL profile specifically for dementia carers. SIDECAR is free for use in public health, social care, and voluntary sector services, and not-for-profit organizations.

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 Understanding the Link between Family Caregiver Quality of Life and the Care Provided to Older People With Dementia

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 153-154
Author(s):  
Afeez Hazzan
Keyword(s):  
Quality Of Life ◽  
Quality Of Care ◽  
Older People ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Well Being ◽  
The United States ◽  
People With Dementia ◽  
The Impact

Abstract Dementia is one of the most rapidly growing diseases in the United States. In 2018, the direct costs to American society of caring for older people with dementia was approximately $277 billion. Primary informal caregivers are mainly responsible for the care of older people with dementia including Alzheimer’s disease. Caregivers perform a myriad of duties ranging from shopping for their loved ones’ groceries, helping with medications, and managing finances. The caregiving role becomes more demanding as the disease progresses over time, and studies have shown that the quality-of-life (QoL) experienced by caregivers of older adults who have dementia is lower than the QoL of caregivers for older people who do not have dementia. To the best of our knowledge, there has been no research conducted to investigate whether lower caregiver QoL affects the level or quality of care that caregivers provide to persons with dementia. In the current study, we interviewed family caregivers living in Rochester, New York to inquire about their quality of life and the care provided to older people living with dementia. Further, caregivers completed the 36-item Short Form Health Survey (SF-36) as well as a draft questionnaire for measuring the quality of care provided to older people living with dementia. Both quantitative and qualitative findings from this study reveals important relationships between family caregiver QoL and the care provided, including the impact of social support and financial well-being. The study findings could have significant impact, particularly for the provision of much needed support for family caregivers.

scholarly journals Patient Reported Outcome Measures Assessing Health-Related Quality Of Life in Dupuytren´S Disease: A Systematic Review

2020 ◽  
Vol 5 (01) ◽  
Author(s):  
Diego Gómez Herrero ◽  
Rafael Sanjuan-Cerveró ◽  
Pedro Vazquez-Ferreiro ◽  
Francisco Javier Carrera-Hueso ◽  
Marina Sáez-Belló ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Outcome Measures ◽  
Patient Reported Outcome Measures ◽  
Measurement Properties ◽  
Health Related Quality ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

Objective: The objective of this study is to carry out a systematic review of the outcome measures reported by the patient that are used to measure the quality of life of patients with Dupuytren´s disease (DD), assessing their relevance and effectiveness. Methods: A systematic literature search was carried out in the PubMed®, Web of Sciencie®, SciELO®, EMBASE®, Google Scholar® and Cochrane® databases. We searched for peer-reviewed articles evaluating health related quality of life (HR-QoL) in patients with DD diagnosed and/or treated until April 1, 2017, for English or Spanish language. The following keywords were used: “Dupuytren´s disease (MeSH)” AND “health related quality of life (MeSH)”. The documents were eligible for inclusion if they described data on the HR-QoL domains in relation to diagnosis or treatment of DD after a revision process by two independent authors. The checklist (STROBE) was used to evaluate the quality of the works. Results: From 352 identified articles were finally selected 26 studies in the systematic review, mostly European. A total of nine outcomes measures specifically reported by the patient were identified: DASH (used in 13 of the 26 selected studies), Quick-DASH (8/26), MHQ (7/26), briefMHQ (1/26), URAM (4/26), POS-HAND/ARM (1/26), SDSS (1/26), DDSP (1/26) and CHFS (1/26) questionnaires. We analyze their quantitative results to evaluate the effectiveness and evaluate the methodological quality of the studies on the measurement properties of the results reported by patients related to health. Conclusion: More work is urgently needed in these areas before we can reach a consensus on which instrument is the best to assess functional deterioration and improvement in patients with DD.

scholarly journals Evaluating measures of quality of life in adult scoliosis: a protocol for a systematic review and narrative synthesis

2021 ◽  
Vol 10 (1) ◽  
Author(s):  
James E. Archer ◽  
Charles Baird ◽  
Adrian Gardner ◽  
Alison B. Rushton ◽  
Nicola R. Heneghan
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Outcome Measures ◽  
Study Design ◽  
Systematic Reviews ◽  
Primary Outcome ◽  
Adult Scoliosis ◽  
Measurement Properties ◽  
Narrative Synthesis

Abstract Background Adult scoliosis represents a distinct subgroup of scoliosis patients for whom the diagnosis can have a large impact on their health-related quality of life (HR-QOL). Therefore, HR-QOL patient-reported outcome measures (PROMs) are essential to assess disease progression and the impact of interventions. The objective of this systematic review is to evaluate the measurement properties of HR-QOL PROMs in adult scoliosis patients. Methods We will conduct a literature search, from their inception onwards, of multiple electronic databases including AMED, CINAHL, EMBASE, Medline, PsychINFO and PubMed. The searches will be performed in two stages. For both stages of the search, participants will be aged 18 and over with a diagnosis of scoliosis. The primary outcome of interest in the stage one searches will be studies which use PROMs to investigate HR-QOL as defined by the Core Outcome Measures in Effectiveness Trials (COMET) taxonomy, the secondary outcome will be to assess the frequency of use of the various PROMs. In stage two, the primary outcome of interest will be studies which assess the measurement properties of the HR-QOL PROMs identified in stage one. No specific measurement property will be given priority. No planned secondary outcomes have been identified but will be reported if discovered. In stage one, the only restriction on study design will be the exclusion of systematic reviews. In Stage two the only restriction on study design will be the exclusion of full-text articles not available in the English language. Two reviewers will independently screen all citations and abstract data. Potential conflicts will be resolved through discussion. The study methodological quality (or risk of bias) will be appraised using the Consensus-based Standards for the selection of Health Measurement Instruments (COSMIN) checklist. The overall strength of the body of evidence will then be assessed using the Grading of Recommendations, Assessment, Development and Evaluation (GRADE) approach. A narrative synthesis will be provided with information presented in the main text and tables to summarise and explain the characteristics and findings of the included studies. The narrative synthesis will explore the evidence for currently used PROMs in adult scoliosis patients and any areas that require further study. Discussion The review will help clinicians and researchers identify a HR-QOL PROM for use in patients with adult scoliosis. Findings from the review will be published and disseminated through a peer-reviewed journal and conference presentations. Systematic review registration This systematic review has been registered with the International Prospective Register of Systematic Reviews (PROSPERO), reference number: CRD42020219437

scholarly journals Assessing Health-Related Quality of Life in Asthma

1997 ◽  
Vol 4 (3) ◽  
pp. 145-151
Author(s):  
Elizabeth F Juniper
Keyword(s):  
Quality Of Life ◽  
Measurement Properties ◽  
Health Related Quality ◽  
Functional Impairments ◽  
Children With Asthma ◽  
Related Quality ◽  
Health Related ◽  
Adults And Children ◽  
The Impact

Many clinicians now recognize the importance of incorporating an assessment of health-related quality of life (HRQL) into their clinical studies and practices. Conventional clinical measures provide valuable information about the status of the affected organ system but rarely capture the functional impairments (physical, emotional and social) that are important to patients in their everyday lives. To obtain a complete picture of a patient’s health status, both the conventional clinical indices and the patient's HRQL must be measured. Both adults and children with asthma are distressed by symptoms, such as shortness of breath, cough and chest tightness, and they are limited in their day-to-day activities, such as sports, employment or school work and participation in activities with friends. In addition, both adults and children with asthma are concerned about having asthma, fearful of not having their medications when they need them and frightened of having an asthma attack. They become very frustrated, and children in particular often feel different and isolated from their friends. Disease-specific HRQL questionnaires have been developed and validated for both adults and children with asthma. This paper provides a review of these questionnaires and identifies their strengths and weaknesses. The questionnaires chosen for review have good measurement properties and validity and can be used in both clinical trials and clinical practice to assess the impact of asthma on a patient’s life. Because one of the aims of treatment is to ensure that patients benefit from treatment, an essential component of clinical assessment should be evaluation of HRQL.

scholarly journals Responsiveness and Convergent Validity of QLU-C10D and EQ-5D-3L in Assessing Short-Term Quality of Life Following Esophagectomy

2021 ◽  
Author(s):  
Norma B. Bulamu ◽  
Ravi Vissapragada ◽  
Gang Chen ◽  
Julie Ratcliffe ◽  
Louise A. Mudge ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Convergent Validity ◽  
Controlled Trial ◽  
Short Term ◽  
Role Function ◽  
Emotional Function ◽  
Ceiling Effects ◽  
The Impact ◽  
Utility Scores

Abstract Aim: This study assessed the responsiveness and convergent validity of two preference-based measures; the newly developed cancer-specific EORTC Quality of Life Utility Measure-Core 10 dimensions (QLU-C10D) relative to the generic three-level version of the EuroQol 5 dimensions (EQ-5D-3L) in evaluating short-term quality-of-life outcomes/utilities after esophagectomy.Methods: Participants were enrolled in a multicentre 2×2 factorial randomised controlled trial to determine the impact of preoperative and postoperative immunonutrition versus standard nutrition in patients with esophageal cancer. Quality-of-life was assessed seven days before and 42 days after esophagectomy. Standardized Response Mean and Effect Size were calculated to assess responsiveness. Ceiling effects for each dimension were calculated as the proportion of the best level responses for that dimension. Convergent validity was assessed using Spearman’s correlation and the level of agreement was explored using Bland–Altman plots. Regression analysis was performed to identify which demographic and clinical factors influenced quality of life. Results: Respondents were 164, predominantly male (81%) with mean age of 63 years. Quality-of-life significantly reduced on both measures with large effect sizes (>80), and greater mean difference on QLU-C10D. Ceiling effects were observed with social activities (86%), mobility (67%), anxiety (55%) and pain (19%) dimensions on EQ-5D-3L. For QLU-C10D ceiling effects were observed with emotional function (53%), physical function (16%), nausea (35%), sleep (31%), bowel problems (21%) and pain (20%). A strong correlation (r=0.71) was observed between EQ-5D-3L anxiety and QLU-C10D emotional function dimensions. Good agreement (3.7% observations outside the limits of agreement) was observed between the utility scores. Blood loss and blood transfusion predicted EQ-5D-3L utility while smoking and tumour length >3cm were predictive of QLU-C10D utility. Changes in QLQ-C30 dimensions of emotional function, role function and pain were predictive of changes in EQ-5D-3L utility while changes in physical, social and role function as well as all the symptom scales were predictive of change in QLU-C10D utility. Conclusion: Although there is strong agreement between utility scores, QLU-C10D was more sensitive to short-term utility changes following esophagectomy. Cognisant of requirements by policy makers to apply generic utility measures in cost effectiveness studies, disease-specific measures should be used alongside the generic measures. Trial registrationThe trial was registered with the Australian New Zealand Clinical Trial Registry (ACTRN12611000178943) on the 15th February 2011.

scholarly journals Responsiveness and convergent validity of QLU-C10D and EQ-5D-3L in assessing short-term quality of life following esophagectomy

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Norma B. Bulamu ◽  
Ravi Vissapragada ◽  
Gang Chen ◽  
Julie Ratcliffe ◽  
Louise A. Mudge ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Convergent Validity ◽  
Controlled Trial ◽  
Short Term ◽  
Clinical Trial Registry ◽  
Emotional Function ◽  
Ceiling Effects ◽  
Randomised Controlled ◽  
The Impact

Abstract Aim This study assessed the responsiveness and convergent validity of two preference-based measures; the newly developed cancer-specific EORTC Quality of Life Utility Measure-Core 10 dimensions (QLU-C10D) relative to the generic three-level version of the EuroQol 5 dimensions (EQ-5D-3L) in evaluating short-term health related quality of life (HRQoL) outcomes after esophagectomy. Methods Participants were enrolled in a multicentre randomised controlled trial to determine the impact of preoperative and postoperative immunonutrition versus standard nutrition in patients with esophageal cancer. HRQoL was assessed seven days before and 42 days after esophagectomy. Standardized Response Mean and Effect Size were calculated to assess responsiveness. Ceiling effects for each dimension were calculated as the proportion of the best level responses for that dimension at follow-up/post-operatively. Convergent validity was assessed using Spearman’s correlation and the level of agreement was explored using Bland–Altman plots. Results Data from 164 respondents (mean age: 63 years, 81% male) were analysed. HRQoL significantly reduced on both measures with large effect sizes (> 0.80), and a greater mean difference (0.29 compared to 0.16) on QLU-C10D. Both measures had ceiling effects (> 15%) on all dimensions at baseline. Following esophagectomy, ceiling effects were observed with self-care (86%), mobility (67%), anxiety/depression (55%) and pain/discomfort (19%) dimensions on EQ-5D-3L. For QLU-C10D ceiling effects were observed with emotional function (53%), physical function (16%), nausea (35%), sleep (31%), bowel problems (21%) and pain (20%). A strong correlation (r = 0.71) was observed between EQ-5D-3L anxiety and QLU-C10D emotional function dimensions. Good agreement (3.7% observations outside the limits of agreement) was observed between the utility scores. Conclusion The QLU-C10D is comparable to the more widely applied generic EQ-5D-3L, however, QLU-C10D was more sensitive to short-term utility changes following esophagectomy. Cognisant of requirements by policy makers to apply generic utility measures in cost effectiveness studies, the disease-specific QLU-C10D should be used alongside the generic measures like EQ-5D-3L. Trial registration: The trial was registered with the Australian New Zealand Clinical Trial Registry (ACTRN12611000178943) on the 15th of February 2011.

scholarly journals Development and Validation of Nasal Polyposis Quality of Life Questionnaire (NPQ)

2020 ◽  
Author(s):  
Ilaria Baiardini ◽  
Giovanni Paoletti ◽  
Alessia Mariani ◽  
Luca Malvezzi ◽  
Francesca Pirola ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Convergent Validity ◽  
Nasal Polyposis ◽  
Minimal Important Difference ◽  
Dimensional Structure ◽  
Life Questionnaire ◽  
Quality Of Life Questionnaire ◽  
Development And Validation ◽  
The Impact

Abstract BACKGROUND: To date, no disease-specific tool is available to assess the impact of Chronic Rhinosinusitis with Nasal Polyps (CRSwNP) on Health Related Quality of Life (HRQoL). Therefore, the purpose of this study was to develop and validate a questionnaire specifically designed to this aim: the Nasal Polyposis Quality of Life questionnaire –NPQ.METHODS: According to the current guidelines, the development and validation of the NPQ occurred in two separate steps involving different groups of patients.RESULTS: In the development process of NPQ an initial list of items of 40 items was given to 60 patients with CRSwNP; the 27 most significant items were selected and converted into questions. The validation procedure involved 107 patients (mean age 52.9±12.4). NPQ revealed a five-dimensional structure and high levels of internal consistency (Cronbach's alpha 0.95). Convergent validity (Spearman’ coefficient r=0.75; p< 0.01), discriminant validity (sensitivity to VAS score), reliability in a sample of patients with a stable health status (Interclass Coefficient 0.882) were satisfactory. Responsiveness to clinical changes was accomplished. The minimal important difference was 7. CONCLUSIONS: NPQ is the first questionnaire for the assessment of HRQoL in CRSwNP. Our results provide that the new tool is valid, reliable, and sensitive to individual changes.

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