Assessment of patient information needs: A systematic review of measures.
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ABSTRACT:
SUBMITTER: Christalle E
PROVIDER: S-EPMC6354974 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BACKGROUND:Patient empowerment has gained considerable importance but uncertainty remains about the best way to define and measure it. The validity of empirical findings depends on the quality of measures used. This systematic review aims to provide an overview of studies assessing psychometric properties of questionnaires purporting to capture patient empowerment, evaluate the methodological quality of these studies and assess the psychometric properties of measures identified. METHODS:Electronic searches in five databases were combined with reference tracking of included articles. Peer-reviewed articles reporting psychometric testing of empowerment measures for adult patients in French, German, English, Portuguese and Spanish were included. Study characteristics, constructs operationalised and psychometric properties were extracted. The quality of study design, methods and reporting was assessed using the COSMIN checklist. The quality of psychometric properties was assessed using Terwee's 2007 criteria. FINDINGS:30 studies on 19 measures were included. Six measures are generic, while 13 were developed for a specific condition (N=4) or specialty (N=9). Most studies tested measures in English (N=17) or Swedish (N=6). Sample sizes of included studies varied from N=35 to N=8261. A range of patient empowerment constructs was operationalised in included measures. These were classified into four domains: patient states, experiences and capacities; patient actions and behaviours; patient self-determination within the healthcare relationship and patient skills development. Quality assessment revealed several flaws in methodological study quality with COSMIN scores mainly fair or poor. The overall quality of psychometric properties of included measures was intermediate to positive. Certain psychometric properties were not tested for most measures. DISCUSSION:Findings provide a basis from which to develop consensus on a core set of patient empowerment constructs and for further work to develop a (set of) appropriately validated measure(s) to capture this. The methodological quality of psychometric studies could be improved by adhering to published quality criteria.
| S-EPMC4430483 | biostudies-literature
Project description:IntroductionMany Emergency Departments (ED) publish wait times; however, the patient perspective in what information is requested and the quantity of information to post is limited.MethodsWe conducted a mixed-methods study at a tertiary care academic center. First, we conducted focus groups of 7 patients. We then generated themes following content analysis to create a patient survey. We administered in-person surveys to patients in ED waiting rooms at sites randomized for survey administration. We used preassigned shifts utilized for even patient perspective representation of the 24 hours-a-day/7 days-a-week service. We included waiting room patients over 18 years of age and excluded patients directly referred to a specialty service or who did not speak French or English. We analyzed survey data using descriptive statistics.ResultsWe identified nine dominant focus group themes: wait time definition, wait time notification, communication, education, patient expectations, utilization of the ED, patient behaviour, physical comfort, and patient empowerment. Of the 240 patient questionnaires administered, 81.3% of respondents wanted to know ED wait times before hospital arrival hospital and 90.8% wanted ED wait times posted in the waiting room. Website (46.7%) was the most popular choice for publishing wait times outside the ED. Within the ED, patients had no preference regarding display modality, if times were displayed (39.6%). Overall, 76.7% stated that their satisfaction with the ED would be improved if wait times were posted.ConclusionED patients strongly supported having access to wait time information. Patients believed having wait time information will have a positive impact on their overall ED satisfaction.
| S-EPMC8084678 | biostudies-literature
Project description:Presently, there is no recommendation on how to assess functional status of chronic obstructive pulmonary disease (COPD) patients. This study aimed to summarize and systematically evaluate these measures.Studies on measures of COPD patients' functional status published before the end of January 2015 were included using a search filters in PubMed and Web of Science, screening reference lists of all included studies, and cross-checking against some relevant reviews. After title, abstract, and main text screening, the remaining was appraised using the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) 4-point checklist. All measures from these studies were rated according to best-evidence synthesis and the best-rated measures were selected.A total of 6447 records were found and 102 studies were reviewed, suggesting 44 performance-based measures and 14 patient-reported measures. The majority of the studies focused on internal consistency, reliability, and hypothesis testing, but only 21% of them employed good or excellent methodology. Their common weaknesses include lack of checks for unidimensionality, inadequate sample sizes, no prior hypotheses, and improper methods. On average, patient-reported measures perform better than performance-based measures. The best-rated patient-reported measures are functional performance inventory (FPI), functional performance inventory short form (FPI-SF), living with COPD questionnaire (LCOPD), COPD activity rating scale (CARS), University of Cincinnati dyspnea questionnaire (UCDQ), shortness of breath with daily activities (SOBDA), and short-form pulmonary functional status scale (PFSS-11), and the best-rated performance-based measures are exercise testing: 6-minute walk test (6MWT), endurance treadmill test, and usual 4-meter gait speed (usual 4MGS).Further research is needed to evaluate the reliability and validity of performance-based measures since present studies failed to provide convincing evidence. FPI, FPI-SF, LCOPD, CARS, UCDQ, SOBDA, PFSS-11, 6MWT, endurance treadmill test, and usual 4MGS performed well and are preferable to assess functional status of COPD patients.
| S-EPMC4902414 | biostudies-literature
Project description:BACKGROUND:The purpose of this study was to identify and analyse currently available knowledge on information needs of people with diabetes mellitus, also considering possible differences between subgroups and associated factors. METHODS:Twelve databases including MEDLINE, EMBASE and the Cochrane Library were searched up until June 2015. Publications that addressed self-reported information needs of people with diabetes mellitus were included. Each study was assessed by using critical appraisal tools, e.g. from the UK National Institute for Health and Care Excellence. Extraction and content analysis were performed systematically. RESULTS:In total, 1993 publications were identified and 26 were finally included. Nine main categories of information needs were identified, including 'treatment-process', 'course of disease', 'abnormalities of glucose metabolism' and 'diabetes through the life cycle'. Differences between patient subgroups, such as type of diabetes or age, were sparsely analysed. Some studies analysed associations between information needs and factors such as participation preferences or information seeking. They found, for example, that information needs on social support or life tasks were associated with information seeking in Internet forums. CONCLUSION:Information needs in people with diabetes mellitus, appear to be high, yet poorly investigated. Research is needed regarding differences between diverse diabetes populations, including gender aspects or changes in information needs during the disease course. SYSTEMATIC REVIEW REGISTRATION:The review protocol has been registered at Prospero ( CRD42015029610 ).
| S-EPMC5813383 | biostudies-literature
Project description:BackgroundThere is growing interest in using patient-reported outcome measures to support value-based care in colorectal surgery. To draw valid conclusions regarding patient-reported outcomes data, measures with robust measurement properties are required.ObjectiveThe purpose of this study was to assess the use and quality of patient-reported outcome measures in colorectal surgery.Data sourcesThree major databases were searched for studies using patient-reported outcome measures in the context of colorectal surgery.Study selectionArticles that used patient-reported outcome measures as outcome for colorectal surgical intervention in a comparative effectiveness analysis were included. Exclusion criteria included articles older than 11 years, non-English language, age <18 years, fewer than 40 patients, case reports, review articles, and studies without comparison.Main outcome measuresThis was a quality assessment using a previously reported checklist of psychometric properties.ResultsFrom 2007 to 2018, 368 studies were deemed to meet inclusion criteria. These studies used 165 distinct patient-reported outcome measures. Thirty were used 5 or more times and were selected for quality assessment. Overall, the measures were generally high quality, with 21 (70%) scoring ≥14 on an 18-point scale. Notable weaknesses included management of missing data (14%) and description of literacy level (0%).LimitationsThe study was limited by its use of original articles for quality assessment. Measures were selected for quality analysis based on frequency of use rather than other factors, such as impact of the article or number of patients in the study.ConclusionsPatient-reported outcome measures are widely used in colorectal research. There was a wide range of measures available, and many were used only once. The most frequently used measures are generally high quality, but a majority lack details on how to deal with missing data and information on literacy levels. As the use of patient-reported outcome measures to assess colorectal surgical intervention increases, researchers and practitioners need to become more knowledgeable about the measures available and their quality.
| S-EPMC8029646 | biostudies-literature
Project description:Optimal management of osteoarthritis requires active patient participation. Understanding patients' perceived health information needs is important in order to optimize health service delivery and health outcomes in osteoarthritis. We aimed to review the existing literature regarding patients' perceived health information needs for OA.A systematic scoping review was performed of publications in MEDLINE, EMBASE, CINAHL and PsycINFO (1990-2016). Descriptive data regarding study design and methodology were extracted and risk of bias assessed. Aggregates of patients' perceived needs of osteoarthritis health information were categorized.30 studies from 2876 were included: 16 qualitative, 11 quantitative and 3 mixed-methods studies. Three areas of perceived need emerged: (1) Need for clear communication: terms used were misunderstood or had unintended connotations. Patients wanted clear explanations. (2) Need for information from various sources: patients wanted accessible health professionals with specialist knowledge of arthritis. The Internet, whilst a source of information, was acknowledged to have dubious reliability. Print media, television, support groups, family and friends were utilised to fulfil diverse information needs. (3) Needs of information content: patients desired more information about diagnosis, prognosis, management and prevention.Patients desire more information regarding the diagnosis of osteoarthritis, its impact on daily life and its long-term prognosis. They want more information not only about pharmacological management options, but also non-pharmacological options to help them manage their symptoms. Also, patients wanted this information to be delivered in a clear manner from multiple sources of health information. To address these gaps, more effective communication strategies are required. The use of a variety of sources and modes of delivery may enable the provision of complementary material to provide information more successfully, resulting in better patient adherence to guidelines and improved health outcomes.
| S-EPMC5901923 | biostudies-literature
Project description:PurposeTo perform a systemic literature search to identify Chinese cross culturally adapted and new designed Patient Reported Outcome Measures (PROMs) used for hip assessment, then a standardized evaluation of available instruments in order to provide evidence of high-quality PROMs for clinical use and adoption in future hip registries.MethodsA Systematic Review of the following databases: PUBMED, CINAHL, EMBASE, CNKI was performed to identify relevant PROMs. Instruments underwent standardized assessment and scoring using the EMPRO tool by two independent reviewers. Inter-rater reliability was assessed using intra-class correlation coefficients (ICC).Results2188 articles were retrieved, with seven articles fitting the inclusion criteria consisting of six hip PROMs. Five PROMs were cross culturally adapted and one was originally designed in Mandarin Chinese. Total scores (/100) after EMPRO evaluation: Osteoarthritis of Knee and Hip Quality of Life (OAKHQOL): 55; Copenhagen Hip and Groin Outcome Score (HAGOS): 52; International Hip Outcome Tool (SC-iHOT-33): 45; Hip Disability and Osteoarthritis Outcome Score (HOOS): 37; Questionnaire on the Perceptions and Functions of Patients about Total Hip Arthroplasty (QPFPTHA): 36; Oxford Hip Score (OHS): 35. ICC values were 0.73 for the SC-iHOT-33 and ranged between 0.83-0.93 for the other PROMs indicating good to excellent inter-rater agreement.ConclusionAmong the commonly used hip-specific PROMs found in arthroplasty registries, none of the Chinese adapted versions evaluated by EMPRO is currently rated acceptable for clinical use. Only OAKHQOL and HAGOS reached acceptability threshold. Further research on the attributes of cross-cultural adaptation, interpretability and burden assessment would be helpful.
| S-EPMC8452074 | biostudies-literature
Project description:BackgroundPatient-reported outcome measures (PROMs) are measures of the outcome of treatment(s) reported directly by the patient or carer. There is increasing international policy interest in using these to assess the impact of clinical care.AimsTo identify suitably validated PROMs for asthma and examine their potential for use in clinical settings.MethodsWe systematically searched MEDLINE, EMBASE and Web of Science databases from 1990 onwards to identify PROMs for asthma. These were critically appraised, then narratively synthesised. We also identified the generic PROMs commonly used alongside asthma-specific PROMs.ResultsWe identified 68 PROMs for asthma, 13 of which were selected through screening as being adequately developed to warrant full-quality appraisal: 8 for adults, 4 for children and 1 for a child's caregiver. The PROMs found to be sufficiently well validated to offer promise for use in clinical settings were the Asthma Quality of Life Questionnaire (AQLQ) and mini-AQLQ for adults, and Pediatric Asthma Quality of Life Questionnaire for children. Rhinasthma was considered promising in simultaneously assessing the impact of asthma and rhinitis in those with coexistent disease. We identified 28 generic PROMs commonly used in conjunction with asthma-specific instruments.ConclusionsWe identified asthma PROMs that offer the greatest potential for use in clinical settings. Further work is needed to assess whether these are fit-for-purpose for use in clinical practice with individual patients. In particular, there is a need to ensure these are validated for use in clinical settings, acceptable to patients, caregivers and clinicians, and yield meaningful outcomes.
| S-EPMC4373322 | biostudies-literature
Project description:BackgroundUnderstanding consumers' health information needs across all stages of the pregnancy trajectory is crucial to the development of mechanisms that allow them to retrieve high-quality, customized, and layperson-friendly health information.ObjectiveThe objective of this study was to identify research gaps in pregnancy-related consumer information needs and available information from different sources.MethodsWe conducted a systematic review of CINAHL, Cochrane, PubMed, and Web of Science for relevant articles that were published from 2009 to 2019. The quality of the included articles was assessed using the Critical Appraisal Skills Program. A descriptive data analysis was performed on these articles. Based on the review result, we developed the Pregnancy Information Needs Ontology (PINO) and made it publicly available in GitHub and BioPortal.ResultsA total of 33 articles from 9 countries met the inclusion criteria for this review, of which the majority were published no earlier than 2016. Most studies were either descriptive (9/33, 27%), interviews (7/33, 21%), or surveys/questionnaires (7/33, 21%); 20 articles mentioned consumers' pregnancy-related information needs. Half (9/18, 50%) of the human-subject studies were conducted in the United States. More than a third (13/33, 39%) of all studies focused on during-pregnancy stage; only one study (1/33, 3%) was about all stages of pregnancy. The most frequent consumer information needs were related to labor delivery (9/20, 45%), medication in pregnancy (6/20, 30%), newborn care (5/20, 25%), and lab tests (6/20, 30%). The most frequently available source of information was the internet (15/24, 63%). PINO consists of 267 classes, 555 axioms, and 271 subclass relationships.ConclusionsOnly a few articles assessed the barriers to access to pregnancy-related information and the quality of each source of information; further work is needed. Future work is also needed to address the gaps between the information needed and the information available.
| S-EPMC8902674 | biostudies-literature
Project description:BackgroundPeople with multimorbidity are increasingly engaged, enabled, and empowered to take responsibility for managing their health status. The purpose of the study was to systematically review and appraise the psychometric properties of tools measuring patient engagement in adults with multimorbidity and their applicability for use within engagement programs.MethodsPubMed, Scopus, Web of Science, and PsycInfo were searched from inception to 1 July 2021. Gray literature was searched using EBSCO host-database "Open dissertation". The reference lists of studies meeting the inclusion criteria were searched to identify additional eligible studies. The screening of the search results and the data extraction were performed independently by two reviewers. The methodological quality of the included studies was evaluated with the COSMIN checklist. Relevant data from all included articles were extracted and summarized in evidence synthesis tables.ResultsTwenty articles on eight tools were included. We included tools that measure all four dimensions of patient engagement (i.e., engagement, empowerment, activation, and participation). Their psychometric properties were analyzed separately. Most tools were developed in the last 10 years in Europe or the USA. The comparison of the estimated psychometric properties of the retrieved tools highlighted a significant lack of reliable patient engagement measures for people with multimorbidity. Available measures capture a diversity of constructs and have very limited evidence of psychometric properties that are vital for patient-reported measures, such as invariance, reliability, and responsiveness.ConclusionThis review clarifies how patient engagement, as operationalized in measures purporting to capture this concept, overlaps with, and differs from other related constructs in adults with multimorbidity. The methodological quality of psychometric tools measuring patient engagement in adults with multimorbidity could be improved.Systematic review registrationhttps://www.crd.york.ac.uk/prospero/display_record.php?RecordID=259968, identifier CRD42021259968.
| S-EPMC11294995 | biostudies-literature