Dataset Information

Capturing patient experience: does quality-of-life appraisal entail a new class of measurement?

ABSTRACT: BACKGROUND:Two decades of research on quality-of-life (QOL) appraisal have demonstrated links between patient experience and health outcomes and have accounted for both intra-individual change and inter-individual differences in a wide range of research contexts. The present work investigates patterns across diagnostic and demographic groupings to demonstrate how population-specific circumstances drive the structure of QOL appraisal. METHODS:This secondary analysis (N?=?6448) utilized data from six patient groups: spine surgery, multiple sclerosis, heterogeneous chronically ill, heterogeneous cancer, bladder cancer, and human immunodeficiency virus (HIV). We explored patterns of inter-item correlation across patient samples, using items from the Standards of Comparison and Sampling of Experience subsections of the QOL Appraisal Profile v1 and v2. Similar matrices were compared by demographic characteristics. RESULTS:Patterns of inter-item correlations for Standards of Comparison items varied sharply across disease groups and racial groups while being similar across age, gender, and education levels. Inter-item correlation matrices for Sampling of Experience items revealed marked differences among disease groups and educational and racial categories but were similar across age and gender groups. CONCLUSIONS:Appraisal parameters showed evidence of shared and unique aspects across samples and circumstances, findings which make sense in light of sample differences in health status and demographic influences. Tools to assess patient experience and meaning may be best understood as idiometric instruments. We discuss their distinctions from psychometric and clinimetric tools at theoretical, statistical, and applied levels.

SUBMITTER: Schwartz CE

PROVIDER: S-EPMC7591682 | biostudies-literature | 2020 Oct

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Capturing patient experience: does quality-of-life appraisal entail a new class of measurement?

Schwartz Carolyn E CE Stark Roland B RB Rapkin Bruce D BD

Journal of patient-reported outcomes 20201027 1

<h4>Background</h4>Two decades of research on quality-of-life (QOL) appraisal have demonstrated links between patient experience and health outcomes and have accounted for both intra-individual change and inter-individual differences in a wide range of research contexts. The present work investigates patterns across diagnostic and demographic groupings to demonstrate how population-specific circumstances drive the structure of QOL appraisal.<h4>Methods</h4>This secondary analysis (N = 6448) util ...[more]

PMID: 33108540

Similar Datasets

Project description:Importance:Quality of life (QoL) is an important consideration in cancer medicine, especially because drugs are becoming more costly and may only result in modest gains in overall survival. However, there has been no descriptive analysis for the points at which QoL is measured in cancer trials. Objective:To estimate the prevalence of studies that measure QoL at different points and see how many studies measure QoL for the entirety of a patient's life. Design, Setting, and Participants:This cross-sectional analysis includes all articles on oncology clinical trials in the 3 highest-impact oncology journals, published between July 2015 and June 2018, that reported QoL outcomes. Main Outcomes and Measures:Data were abstracted on when QoL was assessed and the characteristics of these studies. Results:For all 149 studies that met inclusion criteria, QoL assessment was high during treatment (104 articles [69.8%]), during follow-up (81 articles [54.4%]), and after the end of the intervention (68 articles [45.6%]). In 5 of the 149 studies (3.4%), QoL was assessed until death, including in only 1 of the 74 studies on metastatic or incurable cancers. Among these 5 studies, only 1 (20%) used a drug intervention, 1 (20%) used a behavioral intervention, and 2 (40%) used a radiation intervention; only 1 of 5 was in the metastatic setting. The number of studies that reported a positive QoL outcome (ie, QoL outcome was more favorable in the intervention group than in the control group) was between 42 of 81 articles (51.9%) and 16 of 28 articles (57.1%) for most QoL assessment points but only 1 of 5 articles (20%) for studies measuring QoL until death. Conclusions and Relevance:This study found that most clinical trials assessed QoL during the treatment or intervention and often during a given amount of follow-up but infrequently assessed QoL on disease progression and rarely followed QoL until the end of the patient's life. Most studies reporting QoL until the end of life reported worse QoL outcomes for the intervention group than the control group. Future research and policy recommendations should consider not just short-term QoL outcomes but QoL outcomes throughout the patient's cancer care.

Project description:IntroductionThe aim of this study is to describe the mealtime experience using the qualitative components of the Austin Health Patient Mealtime Experience Tool (AHPMET) to complement the quantitative findings of this tool.MethodsA multiphase, cross-sectional study was undertaken across all sites of Austin Health (Victoria, Australia) between March 2020 and November 2021. Patient mealtime experience was measured using the AHPMET. Descriptive statistics and a deductive thematic analysis approach described the patients' mealtime experiences.ResultsQuestionnaire data were collected from 149 participants. Patients were most satisfied with staff interactions, and least satisfied with dimensions of food quality, specifically, flavour, presentation, and menu variety. Clinical symptoms, nutrition impact symptoms and the patient's position were barriers to consumption.DiscussionFood quality was perceived as the poorest aspect of patient satisfaction with the hospital foodservice, particularly flavour, presentation, and menu variety. Future foodservice quality improvements must prioritise improving food quality to have the greatest impact on patient satisfaction. While clinical and organisational systems have a role in improving mealtime experience and oral intake, communicating patient perceptions of the mealtime experience is critical for responding to current perceptions of hospital food quality.ConclusionMealtime experience in the hospital has a significant impact on oral intake and patients' wider perception of hospital services. Questionnaires have been used to capture patient satisfaction with foodservice in the hospital; however, no comprehensive questionnaires including qualitative questions that capture the broader mealtime experience have been validated across different hospital settings. The tool developed through this study can be implemented in any acute and subacute health service to provide feedback and improve the mealtime experience of patients. This has the capacity to improve mealtime intake, mitigate malnutrition, and improve quality of life and patient outcomes.

Project description:BackgroundChildren's oral health-related quality of life (COHQoL) measures are well known and widely used. However, rigorous systematic reviews of these measures and analyses of their quality are in absence.ObjectivesTo systematically review and quantitatively assess the quality of COHQoL measures through a scoping review.Data sourcesSystematic literature search of PubMed, CINAHL (Cumulative Index to Nursing and Allied Health Literature), EMBASE (Excerpta Medica database), HaPI (Health and Psychosocial Instruments), and DOSS (Dentistry and Oral Sciences Source).Study eligibilityThe measure's focus was COHQoL; the child age ranged from 5 to 14 years; the publication was either a research article or a systematic review and related to caries; and it was written in English or had an English abstract. Two authors independently selected the studies. Disagreements were reconciled by group discussions with a third author.AppraisalThe International Society for Quality of Life Research minimum standards for patient-reported outcome measures were used for quality appraisal.SynthesisDescriptive analysis.ResultsWe identified 18 measures. Their quality scores ranged from 9.5 to 15.0 on a scale of 16. The quality appeared to bear no relationship to the citation and use of these measures. However, elements of these measures might be more useful than others, depending on the age-specific use and primary quality concerns.LimitationsSome of the information on the minimum standards of the 18 measures cannot be found in the existing literature. Measures published without English abstract were not searched.ConclusionsThe quality of these measures is suboptimal. Researchers and practitioners in this field should exercise caution when choosing and using these measures. Efforts at improving the quality of the COHQoL measures, such as refining existing ones or developing new measures, are warranted.Knowledge transfer statementResearchers, clinician scientists, and clinicians can use the results of this study when deciding which oral health-related quality of life measure they wish to use in children.

Project description:BackgroundAtrial fibrillation is a large and growing burden across all types of healthcare. Both incidence and prevalence are expected to double in the next 20 years, with huge impact on hospital admissions, costs and patient quality of life. Patient wellbeing determines the management strategy for atrial fibrillation, including the use of rhythm control therapy and the clinical success of heart rate control. Hence, evaluation of quality of life is an emerging and important part of the assessment of patients with atrial fibrillation. Although a number of questionnaires to assess quality of life in atrial fibrillation are available, a comprehensive overview of their measurement properties is lacking.Methods and resultsWe performed a systematic review of the measurement properties of atrial fibrillation-specific health-related quality of life questionnaires. Methodological quality was assessed using the Consensus based Standards for selection of health Measurement Instruments (COSMIN) checklist, with measurement properties rated for quality against optimal criteria and levels of evidence. We screened 2,216 articles, of which eight articles describing five questionnaires were eligible for inclusion: Atrial Fibrillation 6 (AF6), Atrial Fibrillation Effect on QualiTy-of-Life (AFEQT), Atrial Fibrillation Quality of Life Questionnaire (AFQLQ), Atrial Fibrillation Quality of Life (AFQoL), and Quality of Life in Atrial Fibrillation (QLAF). Good reliability (internal consistency and test-retest reliability) was demonstrated for AF6, AFEQT, AFQLQ and AFQoL. Content, construct and criterion validity were positively rated only in AFEQT. Responsiveness was positively rated only in AFEQT, but with limited evidence. Overall, AFEQT showed strong positive evidence for 2 of 9 measurement properties, compared to one for AFQoL and none for the remaining questionnaires.InterpretationGiven the low ratings for many measurement properties, no single questionnaire can be recommended, although AFEQT performed strongest. Further studies to robustly assess reliability, validity and responsiveness of AF-specific quality of life questionnaires are required. This review consolidates the current evidence for quality of life assessment in patients with atrial fibrillation and identifies priority areas for future research.

Project description:BackgroundPhysicians' interpersonal performance is critical in medical practice, especially primary care practice. The General Practice Assessment Questionnaire (GPAQ) was developed in the United Kingdom to evaluate the quality of primary care from the viewpoint of patients. This questionnaire highlights the evaluation of interpersonal skills and interactions between physicians and patients. Though several other tools also exist to evaluate primary care quality, the GPAQ has several distinctive evaluation items, covering receptionists, access to primary care, and enablement (patients' understanding of self-care and of their own health after consultation). Our purpose was to develop and validate a Japanese version of the GPAQ.MethodsThis cross-sectional study tested the validity and reliability of the Japanese version of the questionnaire. We translated the original GPAQ into Japanese and assessed its reliability and validity among patients aged ≥20 years at five rural primary care centres located in Shimane and Okayama prefectures, Japan. We also examined its internal reliability using Cronbach's alpha coefficient and construct validity-including item-scale correlations, item-other scale correlations, and inter-scale correlations. Moreover, we examined correlations between each score and overall satisfaction using Spearman's correlation coefficient for criterion-related validity.ResultsThe translated version of the GPAQ was administered, and we received 252 responses (mean age: 68 ± 12.3 years, male: 42.9%); all data were analysed. The translated questionnaire showed good reliability and validity, with Cronbach's alphas ranging from 0.79-0.92 for all scales, and satisfactory item-scale, item-other scale, and inter-scale correlations. Correlations with overall satisfaction were strong (Spearman's correlation coefficients: 0.31-0.38) for all scales except 'continuity of care'.ConclusionsThe Japanese version of the GPAQ was acceptable, reliable, and valid. This could be a useful instrument to evaluate key areas of primary care performance in Japan, particularly physicians' communication skills. Further work is required to evaluate its utility in urban areas.

Dataset Information

Capturing patient experience: does quality-of-life appraisal entail a new class of measurement?

Publications

Capturing patient experience: does quality-of-life appraisal entail a new class of measurement?

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets