Development of the Assessment of Burden of COPD tool: an integrated tool to measure the burden of COPD.
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ABSTRACT:
SUBMITTER: Slok AH
PROVIDER: S-EPMC4498164 | biostudies-other | 2014
REPOSITORIES: biostudies-other
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Project description:BACKGROUND:Neurofibromatosis Type 1 (NF1) is a common genetic neurocutaneous disease, with an autosomal dominant inheritance mode. Quality of life has been shown impaired in NF1, due to severe complications, cosmetic features, and uncertainty about the disorder. METHODS:This study sought to develop a self-administered questionnaire in French to assess the burden of NF1 (BoN), then translate and linguistically and cross-culturally validate it into American English, standardized methodology applied, as outlined in the report. RESULTS:Based on several discussions with NF1 patients, a 17-item conceptual questionnaire was first produced. Of the 91 NF1 adult patients who responded to the conceptual questionnaire, 65 (64.6% females) were accessible. Subsequent confirmatory analyses generated a 15-item questionnaire grouped into four domains, demonstrating internal consistency (Cronbach's alpha: 091), discriminant validity, and high reliability. The BoN was likewise shown to significantly correlate with other validated questionnaires, such as Dermatology Life Quality Index, Perceived Stress Scale, and SF12 mental score, indicating good external validity. CONCLUSIONS:BoN is a specific tool for assessing the burden that NF1 generates on many practical aspects of the patient daily activities, beyond the notion of quality of life". Given the increasing relevance that regulatory authorities attribute to patient-reported outcomes, the BoN questionnaire provides such supplementary information while accounting for the burden of NF1 patients in the broadest sense.
| S-EPMC6500066 | biostudies-other
Project description:BACKGROUND:Albinism comprises a group of autosomal recessive diseases that are characterized by poor vision and a variable hypopigmentation phenotype. A comprehensive literature review showed that no tool can assess the burden experienced by individuals who present with albinism, although such a tool is needed and would be beneficial for clinicians and patients alike. METHOD:The questionnaire was devised using standardized methodology for developing and validating questionnaires on the quality of life of subjects according to the following chronological structure: conceptual phase, development phase, and then validation phase. A multidisciplinary working group was assembled, including experts on questionnaire design and development, dermatologists specializing in care for patients with albinism, and representatives of the Genespoir association. RESULTS:Based on an initial verbatim report, the workgroup compiled a list of items that were transcribed and reformulated into questions. During the validation phase, principal component analysis (PCA) was conducted on the 24 items, which allowed the questionnaire to be reduced to 20 questions [Q]. The standardized regression coefficients were all greater than 0.5 for their corresponding factors. Based on their normalized regression coefficients, each group of questions was linked to one of the following four dimensions, with each dimension consisting of at least three questions: "Live with" (8 Q), "Daily life" (3 Q), "Resignation" (3 Q), and "Fear of the future" (6 Q). All dimensions correlated well with the overall BoA score. Cronbach's ? was 0.92 for the entire BoA scale, confirming excellent internal coherence. Intradimensional coherences all demonstrated excellent reliability (??>?0.65). The BoA questionnaire was highly correlated with the SF12, RSES and DLQI validated questionnaires. This outcome confirmed the external validity. CONCLUSION:This questionnaire represents the first specific assessment tool for evaluating the burden of albinism. It is easy to use and relatively quick to complete, which will allow the burden to be evaluated over time with a reproducible questionnaire. To ensure that this questionnaire can be used by as many people as possible, cultural and linguistic validation in US English was conducted with the original French version.
| S-EPMC6145119 | biostudies-literature
Project description:ImportanceClinician compassion is a vital element of health care quality. Currently, there appears to be no validated and feasible method for health care organizations to measure patient assessment of clinician compassion on a large scale.ObjectiveTo develop and validate a tool for measuring patient assessment of clinician compassion that can be used in conjunction with the Clinician and Group Consumer Assessment of Healthcare Providers and Systems (CG-CAHPS) survey.Design, setting, and participantsThis prospective cohort study took place from June 1 to August 30, 2018, at a US academic health care system among a pilot cohort consisting of 3325 adult patients and a validation cohort consisting of 3483 adult patients, both of whom had an outpatient clinic visit and completed the CG-CAHPS survey.Main outcomes and measurementsAfter a comprehensive literature review, 12 candidate survey items were developed. Face and construct validity were performed. Candidate items were disseminated to patients in conjunction with the CG-CAHPS survey in a series of 2 studies: (1) exploratory factor analysis in one cohort to determine the factor structure and the most parsimonious set of items; and (2) validity testing in a second cohort using confirmatory factor analysis. Reliability was tested using Cronbach α. Convergent validity was tested with patient assessment of clinician communication and overall satisfaction questions from CG-CAHPS survey.ResultsOverall, 6493 patient responses were analyzed. The mean (SD) age was 60 (15) years, 4239 patients (65.3%) were women, and 5079 (78.2%) were white. Exploratory factor analyses identified a 5-item compassion measure to be the most parsimonious. Confirmatory factor analyses found good fit. The compassion measure demonstrated good internal consistency (α = 0.94) and convergent validity (clinician communication: ρ = 0.44; overall satisfaction: ρ = 0.52) but reflected a patient experience domain (compassionate care) distinct from what is currently captured in the CG-CAHPS survey.Conclusions and relevanceA simple 5-item tool to measure patient assessment of clinician compassion was developed and validated for use in conjunction with CG-CAHPS survey.
| S-EPMC6537812 | biostudies-literature
Project description:BACKGROUND:Leakage is a major concern for people who use a stoma, but people's experience and its impact is not well understood. This study aimed to establish a definition of leakage through clinical and user input. This information was used to develop and validate a new measurement tool to understand the impact of leakage for people using a stoma appliance, in the UK, US, France, and Denmark. METHODS:Participants were recruited from a panel of users, hosted by Coloplast, that includes people who currently use Coloplast products. Six clinicians and 41 users took part in concept elicitation interviews. The qualitative findings were used to draft items. A panel of clinical experts was organized to develop and validate items (N =?6). Cognitive debrief interviews were conducted with five users in each country, which resulted in removing some items and revising the measure. A psychometric validation was conducted with 340 people in four countries whereby participants were asked to complete a series of measures online. Full psychometric analyses including validity and reliability were conducted. RESULTS:A final tool was established consisting of three domains related to the burden of leakage: "Emotional impact," "Usual and social activities," and "Coping and control." Convergent validity was evaluated by benchmarking to existing health-related quality of life instruments (domains of SF-36 and Ostomy-Q). This showed high correlation between domains of the leakage tool and other measures, in particular for the Emotional impact domain when compared with SF-36 Emotional well-being and Ostomy-Q Confidence domain (p <?0.001). Coping and control correlated moderately well with most PROs tested for except the physical functioning domains, which showed only modest correlation (p <?0.001). Usual and social activities correlated equally well with all domains. Internal consistency was high for Emotional impact and Usual and social activities (>?0.92). CONCLUSION:The study highlights how users define leakage and its impact in a way that is meaningful to them. This information has been used to develop an instrument to measure leakage which can potentially be used by clinicians and researchers. The instrument demonstrated evidence supporting its reliability and validity as an outcome measure to assess the impact of leakage in stoma care.
| S-EPMC6295083 | biostudies-other
Project description:BackgroundThe impact of COVID-19 has been felt worldwide, yet we are still unsure about its full impact. One of the gaps in our current knowledge relates to the long-term mental and physical impact of the infection on affected individuals. The COVID-19 pandemic hit the Netherlands at the end of February 2020, resulting in over 900,000 people testing positive for the virus, over 24,000 hospitalizations, and over 13,000 deaths by the end of January 2021. Although many patients recover from the acute phase of the disease, experience with other virus outbreaks has raised concerns regarding possible late sequelae of the infection.ObjectiveThis study aims to develop an online tool to assess the long-term burden of COVID-19 in patients.MethodsIn this paper, we describe the process of development, assessment, programming, implementation, and use of this new tool: the assessment of burden of COVID-19 (ABCoV) tool. This new tool is based on the well-validated assessment of burden of chronic obstructive pulmonary disease tool.ResultsAs of January 2021, the new ABCoV tool has been used in an online patient platform by more than 2100 self-registered patients and another 400 patients in a hospital setting, resulting in over 2500 patients. These patients have submitted the ABCoV questionnaire 3926 times. Among the self-registered patients who agreed to have their data analyzed (n=1898), the number of females was high (n=1153, 60.7%), many were medically diagnosed with COVID-19 (n=892, 47.0%), and many were relatively young with only 7.4% (n=141) being older than 60 years. Of all patients that actually used the tool (n=1517), almost one-quarter (n=356, 23.5%) used the tool twice, and only a small group (n=76, 5.0%) used the tool 6 times.ConclusionsThis new ABCoV tool has been broadly and repeatedly used, and may provide insight into the perceived burden of disease, provide direction for personalized aftercare for people post COVID-19, and help us to be prepared for possible future recurrences.
| S-EPMC8015936 | biostudies-literature
Project description:BackgroundNovel population-based integrated care services are being developed to adequately serve the growing number of elderly people. Suitable, reliable and valid measurement instruments are needed to evaluate the quality of care delivered.ObjectiveTo develop a measure to evaluate the quality of integrated care from the perspective of elderly people, the Patient Assessment of Integrated Elderly Care (PAIEC), and then to assess its psychometric properties.Methods/designAfter the Patient Assessment of Chronic Illness Care was adapted to the PAIEC, a cross-sectional postal-survey study was performed among 223 elderly people who received integrated elderly care and support. We assessed the factor structure, internal consistency, known groups and divergent validity using robust nonparametric tests.ResultsMean age of participants was 83 years (standard deviation 4.7), and 69% was female. The original five-factor model was rejected; a good fit was found for a three-factor model, when excluding the item on patients' satisfaction with care. The PAIEC and its subscales showed good internal consistency (ordinal alphas > 0.90). Known-groups validity was supported regarding number of medications, prevalence of chronic conditions and home care received. No differences were found between groups based on sociodemographic aspects. Divergent validity was supported by low correlations (Spearman's rank correlation coefficients < 0.30) between PAIEC scales and measures of quality of life, complexity of care needs and frailty.ConclusionThe PAIEC seems to have considerable potential as a reliable and valid measurement instrument that evaluates quality of integrated care and support from the perspective of elderly people.
| S-EPMC5042070 | biostudies-literature
Project description:BACKGROUND:Numerous instruments have been developed to assess patient reported outcomes; most approaches however focus on a single condition. With the increasing prevalence of multimorbidity, this might no longer be appropriate. Moreover, a more comprehensive approach that facilitates shared decision making and stimulates self-management is most likely more valuable for clinical practice than a questionnaire alone. This study aims to transform the Assessment of Burden of Chronic Obstructive Pulmonary Disease (COPD) (ABC)-tool into the Assessment of Burden of Chronic Conditions (ABCC)-tool for COPD, asthma, and diabetes mellitus type 2 (DM2). The tool consists of a scale, a visualisation of the outcomes, and treatment advice. METHODS:Requirements for the tool were formulated. Questionnaires were developed based on a literature study of existing questionnaires, clinical guidelines, interviews with patients and healthcare providers, and input from an expert group. Cut-off points and treatment advice were determined to display the results and to provide practical recommendations. RESULTS:The ABCC-scale consists of a generic questionnaire and disease-specific questionnaires, which can be combined into a single individualized questionnaire for each patient. Results are displayed in one balloon chart, and each domain includes practical recommendations. CONCLUSIONS:The ABCC-tool is expected to facilitate conversations between a patient and a healthcare provider, and to help formulate treatment plans and care plans with personalised goals. By facilitating an integrated approach, this instrument can be applied in a variety of circumstances and disease combinations.
| S-EPMC6958572 | biostudies-literature
Project description:Psychologic factors affect how patients with COPD respond to attempts to improve their self-management skills. Learned helplessness may be one such factor, but there is no validated measure of helplessness in COPD.We administered a new COPD Helplessness Index (CHI) to 1,202 patients with COPD. Concurrent validity was assessed through association of the CHI with established psychosocial measures and COPD severity. The association of helplessness with incident COPD exacerbations was then examined by following subjects over a median 2.1 years, defining COPD exacerbations as COPD-related hospitalizations or ED visits.The CHI demonstrated internal consistency (Cronbach alpha = 0.75); factor analysis was consistent with the CHI representing a single construct. Greater CHI-measured helplessness correlated with greater COPD severity assessed by the BODE (Body-mass, Obstruction, Dyspnea, Exercise) Index (r = 0.34; P < .001). Higher CHI scores were associated with worse generic (Short Form-12, Physical Component Summary Score) and respiratory-specific (Airways Questionnaire 20) health-related quality of life, greater depressive symptoms, and higher anxiety (all P < .001). Controlling for sociodemographics and smoking status, helplessness was prospectively associated with incident COPD exacerbations (hazard ratio = 1.31; P < .001). After also controlling for the BODE Index, helplessness remained predictive of COPD exacerbations among subjects with BODE Index </= median (hazard ratio = 1.35; P = .01), but not among subjects with higher BODE Index values (hazard ratio = 0.93; P = .34).The CHI is an internally consistent and valid measure, concurrently associated with health status and predictively associated with COPD exacerbations. The CHI may prove a useful tool in analyzing differential clinical responses mediated by patient-centered attributes.
| S-EPMC2851553 | biostudies-literature
Project description:OBJECTIVE:The aim of the study was to develop a multifactorial tool for assessment of sedation in dogs. METHODS:Following a modified Delphi method, thirty-eight veterinary anaesthetists were contacted to describe the following levels of awareness: no-sedation, light, moderate, profound sedation and excitation. The answers were summarized in descriptors for each level. A questionnaire was created with all the variables obtained from the descriptors. The questionnaire was returned to the panel of anaesthetists to be used before and after real sedations in conjunction with the previous 5-point categorical scale. Data obtained were analysed using the classification-tree and random-forest methods. RESULTS:Twenty-three anaesthetists (60%) replied with descriptions. The descriptors and study variables were grouped in categories: state-of-mind, posture, movements, stimuli-response, behaviour, response-to-restraint, muscle tone, physiological data, facial-expression, eye position, eyelids, pupils, vocalization and feasibility-to-perform-intended-procedure. The anaesthetists returned 205 completed questionnaires. The levels of awareness reported by the anaesthetists were: no sedation in 92, mild (26), moderate (37) and profound in 50 cases. The classification-tree detected 6 main classifying variables: change in posture, response-to-restraint, head-elevation, response-to-toe-pinching, response-to-name, and movements. The random-forest found that the following variables: change in posture, response-to-restraint, head-elevation, response-to-name, movements, posture, response-to-toe-pinching, demeanour, righting-reflex and response-to-handclap, were classified correctly in 100% awake, 62% mild, 70% moderate and 86% of profound sedation cases. DISCUSSION AND CONCLUSION:The questionnaire and methods developed here classified correctly the level of sedation in most cases. Further studies are needed to evaluate the validity of this tool in the clinical and research setting.
| S-EPMC7112187 | biostudies-literature
Project description:BackgroundObjective assessment of symptoms in bronchiectasis is important for research and in clinical practice. The COPD Assessment Test (CAT) is a short, simple assessment tool widely used in COPD. The items included in the CAT are not specific to COPD and also reflect the dominant symptoms of bronchiectasis. We therefore performed a study to validate the CAT as an outcome measure in bronchiectasis.MethodsThe CAT was administered to two cohorts of bronchiectasis patients along with other quality of life questionnaires. Patients underwent comprehensive clinical assessment. One cohort had repeated questionnaires collected before-and-after treatment of acute exacerbations. We analyzed convergent validity, repeatability, and responsiveness of the score and calculated the minimum clinically important difference (MCID) using a combination of distribution and anchor-based methods.ResultsIn both cohorts there were positive correlations between the CAT and the St. George's Respiratory Questionnaire (r = 0.90, P < .0001 and r = 0.87, P < .0001). There was an inverse relationship between CAT and Quality of Life - Bronchiectasis Respiratory Symptoms Scale (r = -0.75, P < .0001) and Leicester Cough Questionnaire score (r = -0.77, P < .0001). Patients with more severe disease, based on the bronchiectasis severity index, had significantly higher CAT scores. CAT also correlated with FEV1 % predicted and 6-min walk distance (6MWD). CAT increased significantly at exacerbation and fell at recovery. The intraclass correlation coefficient for two measurements four-weeks apart while clinically stable was 0.88 (95% CI, 0.73-0.95, P < .0001). An MCID of 4 was most consistent.ConclusionsCAT is a valid, responsive symptom assessment tool in bronchiectasis. The MCID is estimated as 4 points.
| S-EPMC7118240 | biostudies-literature