Patient Related Outcome Measures最新文献

Purpose: To understand women's perspectives, attitudes, and beliefs surrounding menopause transition and increase understanding of digital technology use for symptom management.

Patients and methods: Information was obtained using three studies of women aged 40-65 years experiencing menopause transition symptoms. The HealthyWomen online cross-sectional survey was designed to reflect an inclusive sociodemographic sample representative of the US population. BECOME was a blinded, ethnographic, qualitative research study of women's menopause transition experiences and comprised facilitator-led online asynchronous discussions, online homework entries, and audio-only teleconferences. The NODE.Health online, two-part, cross-sectional patient survey was designed to capture patient and healthcare provider (HCP) sentiment about the use of digital health technologies to address gaps in perimenopausal symptom knowledge and management.

Results: The HealthyWomen survey included 1045 participants, 37 were included in BECOME, and 100 completed the NODE.Health survey. Hot flashes, night sweats, and sleep problems were the most frequently experienced symptoms in the HealthyWomen survey, and over half of participants experiencing symptoms felt the need to seek relief. Whether menopause was considered a medical problem or natural process differed by self-identified race, culture, and ethnicity, as did the likelihood of consulting a HCP over symptoms. Participants preferred to discuss menopause transition with HCPs who did not rush them, were good listeners, and had expertise in the area. Most technology experience was with health websites, but nearly half were unsatisfied with online resources describing menopause-related symptoms. Convenience, ease of use, and accessibility were the most common reasons for pursuing digital health technology.

Conclusion: Factors such as cultural beliefs, values and attitudes towards menopause determine personal experiences. More open discussions with friends, family, and HCPs may raise awareness and reduce barriers to seeking help. To provide optimal care throughout the menopause transition, HCPs should consider patients' psychosocial and cultural backgrounds, and personal and subjective perspectives.

Background: Patient engagement is increasingly considered to be an important element in the treatment of brain disorders to optimise outcomes for patients, society, and healthcare systems. Nonetheless, scientific research examining methodologies to engage patients with brain diseases in Research and Innovation (R&I) is scarce.

Aim: To review existing scientific evidence regarding the engagement of patients with brain disorders in research and innovation.

Methods: Studies were retrieved from several bibliographic databases (publication date between January 2016 and April 2019) with pre-specified selection criteria.

Results: In total, 49 articles were identified as meeting the inclusion criteria and were reviewed systematically. Results showed that there is limited evidence available on the impact and (cost-) effectiveness of patient engagement in (brain) research and innovation. Most published studies are protocols, guidelines, and discussion articles for patient engagement in health research and innovation. Overall, there exists a general consensus to engage patients in every step of the research procedure. Relevant evidence identified includes principles of engagement, definitions of stakeholder types, key considerations for planning, conducting and disseminating engaged research, potential engagement activities, and examples of promising practices.

Discussion: Findings are inconclusive due to methodological differences. Comparison between studies was difficult due to differences in patients, form of engagements, and total duration of engagement of patients. Experiences of patient engagement mainly concern adherence to medical treatments or participation of "expert patients" in clinical trials, but very rarely the governance of R&I according to the dictates of Responsible Research and Innovation (RRI). More structuralized, well-conducted and comparable Randomized Controlled Trials (RCTs) are needed to be able to make evidence-based recommendations on how to increase effective patient engagement in research and innovation and assess the impact and (cost)-effectiveness.

Background: Light chain (AL) amyloidosis is a rare and progressive disease that affects myriad organs and systems. Patients with cardiac involvement have the highest risk of death. This report compiles findings across three cohorts of patients with AL amyloidosis to understand patterns of employment and work impacts.

Methods: Data came from three cohorts recruited through patient advocacy organizations in the US. Patients in Cohort 1 completed the SF-36v2^® Health Survey (SF-36v2), the Work Productivity and Activity Impairments - Specific Health Problem (WPAI) questionnaire, and the 12-item Kansas City Cardiomyopathy Questionnaire (KCCQ-12). The relationship between work impacts (WPAI scores) and HRQoL (SF-36v2 scores) was investigated using multivariable logistic regression and summarized according to cardiac severity using New York Heart Association (NYHA) classes estimated from KCCQ-12 scores. Changes in employment, days of missed work, and long-term disability due to AL amyloidosis were summarized for patients diagnosed in the past 24 months and stratified by NYHA class (Cohort 2). Findings were contextualized using patient interviews (Cohort 3).

Results: Work-related impacts, especially reduced productivity, were common among patients with AL amyloidosis. WPAI scores were significantly related to HRQoL (p<0.05 for all models). Among patients with cardiac involvement, the greatest degree of work impacts was observed for those in NYHA class 3 or 4. Changes in employment, missed work, and long-term disability were common among newly diagnosed patients, especially among those in NYHA class 3 or 4. Patient interviews supported the survey findings; patients described absences, reduced productivity at work, and loss of employment due to the disease and its treatment.

Conclusion: Patients with AL amyloidosis, particularly those with more advanced disease, experience impacts across a range of employment-related outcomes. These findings highlight the need for more effective treatments and interventions which may improve functioning and patient outcomes, while reducing indirect costs associated with the disease.

Purpose: To identify factors that contribute to adverse events among older adults during short stays at skilled nursing facilities (SNFs) for rehabilitation (ie, up to 100 resident days). Adults aged 65 years and older are at serious risk for adverse events throughout their continuum of care. Over 33% of older adults admitted to SNFs experienced an adverse event (eg, falls) within the first 35 days of their stay.

Design: A scoping review.

Setting and participants: Older adults admitted for short stays in SNFs.

Methods: Eligibility criteria were peer-reviewed original articles published between 1 January 2015 and 30 May 2021, written in English, and containing any of the following key terms and synonyms: "skilled nursing facilities", "adverse events", and "older adults". These terms were searched in PubMed, MEDLINE, CINAHL, EBSCOHost, and the ProQuest Nursing and Allied Health Database. We summarized the findings using the Joanna Briggs Institute and PRISMA-ScR reporting guidelines. We also used the Capability-Opportunity-Motivation-Behavior (COM-B) model of health behavioral change as a framework to guide the content, thematic, and descriptive analyses of the results.

Results: Eleven articles were included in this scoping review. Intrinsic and extrinsic contributors to adverse events (ie, falls, medication errors, pressure ulcers, and acute infections) varied for each COM-B domain. The most frequently mentioned capacity-related intrinsic contributors to adverse events were frailty and reduced muscle strength due to advancing age. Inappropriate medication usage and polypharmacy were the most common capacity-related extrinsic factors. Opportunity-related extrinsic factors contributing to adverse events included environmental hazards, poor communication among SNF staff, lack of individualized resident safety plans, and overall poor care quality owing to racial bias and organizational and administrative issues.

Conclusion: These findings shed light on areas that warrant further research and may aid in developing interventional strategies for adverse events during short SNF stays.

Introduction: Most people on hemodialysis (HD) report a high symptom burden. Fatigue and lack of energy are prominent, interfering with daily life and associated with poor outcome. Prolonged recovery time after each of the thrice weekly dialysis treatments is common. The impact of HD therapies, like expanded hemodialysis (HDx), on patient reported recovery time and symptom burden is unclear.

Methods: A dialysis unit decided to perform regular assessments of patient-reported symptom burden, using the POS-S Renal Symptom questionnaire and the "Recovery time from last dialysis session" question as part of routine patient focused care. At a similar time, a clinical evidence-based decision was taken to switch the in-center dialysis cohort from regular high-flux dialysis membrane to medium cut-off (MCO) membrane, introducing HDx therapy.

Results: Quarterly assessment of patient-reported symptom burden was well accepted. A sustained clinically relevant reduction in post-dialysis recovery time was observed following the therapy switch. In patients providing data up to 12 months (N = 58), median recovery time decreased from 210 min (IQR 7.5-600) to 60 min (0-210; p = 0.002) and 105 min (0-180; p = 0.001) at 6 and 12 months, respectively. Thirty-six percent of individuals reported a recovery time longer than 360 minutes at the initial assessment, which decreased to 9% at 12 months. The POS-S Renal total symptom score showed a decrease at 6 months but no difference from baseline at 12 months. The "fatigue/lack of energy" symptom showed a sustained improvement; the percentage of participants scoring its impact as "severe" or "overwhelming" decreased from 28% at baseline to 16% at 12 months. Changes in other symptoms were more variable.

Conclusion: Regular assessment of patient reported symptoms is feasible in routine dialysis practice and can help in evaluating the impact of clinical interventions. Observations suggest that HDx therapy may reduce post-dialysis recovery time and improve perceived fatigue level.

Purpose: The full utility of general health Patient-Reported Outcomes Measurement Information System^® (PROMIS) surveys in the eye care setting has not been previously demonstrated. This report demonstrates the feasibility of implementing PROMIS in an eye care clinic.

Patients and methods: Over 2 months, general health and functioning PROMIS surveys were offered to all patients in an optometric clinic in Rochester, NY. Demographic and clinical variables were recorded along with percent completion and time to completion of the survey.

Results: Across 651 patients, 258 chose to attempt PROMIS. Patients with low visual acuity were less likely to attempt the survey (p=0.049), and younger patients were more likely to complete the survey (p=0.025); no other patient characteristics were found to differ between those who did and did not participate in, nor complete, PROMIS. A total of 193 patients completed the survey (74.8%) in a mean time of 6.36 minutes (range = [1.43, 51.92] minutes; standard deviation = 5.62 minutes). Time to completion did not vary significantly across any groups.

Conclusion: Our relatively high completion rate among those who attempted PROMIS indicates that PROMIS surveys are feasible to implement in an optometry clinic. While most patients completed the survey in little time, the large range of time to completion may indicate that some patients had difficulty completing the survey. Furthermore, the significant difference in visual acuity between those who participated in the survey and those who did not highlights the need to address the way PROMIS is delivered in order to foster greater inclusion.

Background: The minimal clinically important difference (MCID) is an important instrument in the interpretation of changes in patient-reported outcome measures (PROM). To our knowledge, no MCID of the Western Ontario Osteoarthritis of the Shoulder Index (WOOS) score has ever been reported and no studies have reported an MCID for the Oxford Shoulder Score (OSS) based on patients with glenohumeral osteoarthritis, treated with an anatomical total shoulder arthroplasty (aTSA). The aim of this study was to determine MCID for WOOS and OSS in a cohort of patients with glenohumeral osteoarthritis treated with an aTSA.

Methods: All patients treated with an aTSA for glenohumeral osteoarthritis at our institution between March 2017 and February 2019 were included. Each patient completed the WOOS and the OSS preoperatively and one year postoperatively. At one year, the patients were asked to rate their overall improvement on a 7-point scale. We used an anchor-based method as our primary method to calculate the MCID, supported by two different distribution-based methods.

Results: A total of 45 primary aTSA were included. The MCID of WOOS was 12.3 according to the anchor-based method and 14.2 and 10.3 according to the two distribution-based methods. The MCID of OSS was 4.3 according to the anchor-based method and 5.8 and 4.3 according to the two distribution-based methods.

Conclusion: The anchor-based method is considered superior to the distribution-based method, and therefore we advocate to use this as MCID. For patients with glenohumeral osteoarthritis treated with an aTSA, the MCID values were 12.3 points for WOOS and 4.3 points for OSS. To our knowledge, this is the first study to report a MCID value for WOOS and the first study to report a MCID value for OSS in this subgroup of patients.

Background: The tobacco pandemic is one of the world's most serious public health concerns, killing more than 8 million lives per year. The worst burden is in low- and middle-income countries. Unless appropriate action is taken, the burden may worsen. Health workers are among the actors to implement smoke cessation interventions. However, the level of intervention practices towards smoke cessation was not defined.

Objective: To determine health workers' practice towards smoke cessation interventions based on 5A's model and associated factors in public hospitals.

Methods: Facility-based cross-sectional design was used. All public hospitals found in the Hadiya zone were included in the study. From each public hospital, representative number of health workers, who fulfil inclusion criteria, were included in the study. A total of 323 sample size of health workers were used. A self-administered questionnaire was employed to collect data. Both descriptive and advanced analyses were performed using SPSS software version 20.0. In bivariable analysis, variables with p-value < 0.25 were considered for multivariable analysis. Finally, odds ratio with 95% CI and p-value < 0.05 were used to declare factors as significantly associated with the outcome variable.

Results: About 97% of health care workers had poor practice on smoking cessation interventions. About 7.4% (23) health workers reported as they were current smokers. Moreover, only 28% of health workers asked their patients about smoking status. Being females, having <10 years of service, training and having good knowledge was significantly associated with the outcome variable.

Conclusion: Majority of the healthcare workers surveyed did not provide smoking cessation interventions. Identified statistically significant factors with the practice of smoke cessation interventions in this study were sex, knowledge, training and service years. Therefore, strategies should be designed and implemented to improve and equip the health workers towards practising of smoke cessation interventions by instituting smoke cessation programs.

Background: Chronic heart failure is one of the most important public health concerns in the industrialized and developing world having increasing prevalence. Measuring quality of life using rigorous statistical methods may be helpful to provide input for decision-makers and the development of guidelines. This study aimed to assess health-related quality of life and associated factors among heart failure patients attending the University of Gondar Specialized Hospital.

Methods: A cross-sectional study was employed to select 469 heart failure patients who have follow-up at the University of Gondar Specialized Hospital consecutively from March 01 to 30, 2020. Data were entered to Epi Info 7 and exported to STATA version 15 for further statistical analysis. The quality-of-life domains were measured with World Health Organization Quality of Life BREF. Structural equation modeling was employed to estimate the relationships among exogenous, mediating, and endogenous variables simultaneously.

Results: Chronic heart failure patients had a significantly lower mean score in physical health domain (31.70 mean score), environmental health domain (38.35 mean score), and in overall quality of life domain (41.61 mean score) moderate in social relation domain (46.22 mean score), and in psychological health domain (50.21 mean score) of health-related quality of life (p-value <0.0001). Age had a direct positive effect on health-related quality of life. Residency also had a direct negative effect on both physical and environmental health-related quality of life domain. Duration of heart failure had a direct negative effect on psychological health.

Conclusion: The finding of this study indicated that poor health-related quality of life in the physical health domain, moderately poor in overall health-related quality of life, and moderate health-related quality of life in the psychological health domain among Chronic heart failure patients. Age, residence, marital status, income, and duration of HF were significantly associated factors for quality of life among HF patients.