Patient Related Outcome Measures最新文献

Objective: The objectives of this study were to 1) assess the content validity of generic preference-based measures (GPBMs), and (2) examine the convergent validity of the EuroQol 5 Dimension 5 Level (EQ-5D-5L), against the Patient Generated Index (PGI) in Amyotrophic Lateral Sclerosis (ALS).

Methods: Participants were recruited from 3 clinical sites across Canada. The PGI, EQ-5D-5L and Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R) were administered through an online or hardcopy survey and scores compared for convergent validation. Domains nominated by participants as important to their health-related quality of life were generated using the PGI, classified using the International Classification of Functioning, Disability and Health (ICF) and mapped onto GPBMs to determine content coverage.

Results: Fifty-two participants (N=28 female; 61.3 ± 11.6 mean age ± standard deviation (SD); 3.5 ± 2.9 mean ± SD years since diagnosis) completed this study. The top three ICF domains identified by participants were recreation and leisure, lower limb mobility, and interpersonal relationships. The Quality of Well-Being Self-Administered (QWB-SA) scale had the highest content coverage (87%) and the Health Utilities Index 3 (HUI3) had the lowest (33%). Two domains were covered by all GPBMs and no GPBM included all domains identified as important by participants. A moderate correlation coefficient of 0.52 between the PGI and EQ-5D-5L was found.

Conclusion: The majority of GPBMs covered only approximately half of the domains important to individuals with ALS suggesting the need for an ALS specific preference-based measure to better reflect the health-related quality of life of this population.

Background: Functional disability is defined as limitations in performing socially defined roles and tasks expected within a sociocultural and physical environment. Functionality is a result of good mental health care. This study aimed to assess the magnitude and determinants of functional disability among patients with a mood disorders treated at St Paul's Hospital outpatient psychiatry clinic, Addis Ababa, Ethiopia in 2019.

Methods: This was a cross-sectional study. We used consecutive sampling to select respondents. Data were collected through face-to-face interviews using the 12-item World Health Organization Disability Assessment Schedule version 2.0. Data were entered into EpiData 3.1 and exported to SPSS 22.0 for analysis. Linear regression analysis was used to identify significant variables associated with outcomes.

Results: This study enrolled 235 respondents with a 100% nonresponse rate, and 62.5% were diagnosed with major depressive disorder. Mean disability score was 30.2%±32.4%. Nearly a quarter of respondents had had difficulties every day with day-to-day activity for the past 30 days. Current level of improvement (no change, β=10.5, 95% CI 3.85-17.2), relapse (β=6.15, 95% CI 1.34-10.9) and self-stigma (β=4.36, 95% CI 1.39-7.33) were strong predictors of disability score (P<0.05).

Conclusion: This study found a mean disability score of 30.2%. Current level of improvement and self-stigma were variables associated with disability, so working with stakeholders to focus on patients' clinical improvement from their illness and self-stigma will be vital to enhance their functionality.

Purpose: According to World Health Organization (WHO), cataract is the leading cause of blindness and visual impairment throughout the world. Post-operative refractive error is one of the commonest reasons for poor visual outcome after cataract surgery especially in developing countries where the standard modern biometry equipments are not available. The objective of this study was to assess the refractive outcome of cataract surgery done at University of Gondar (UoG) Tertiary Eye Care and Training Center, North West Ethiopia.

Methods: A descriptive cross-sectional study was done on 66 patients who had undergone manual small incision cataract surgery (MSICS) and fulfilled the inclusion criteria at UoG Tertiary Eye Care and Training Center from July 15 2019 to October 15 2019.

Results: From 90 post-operatively refracted eyes, 58 (64.4%) eyes achieved a target refraction of ±1.00 Diopter (D). The right and left eyes achieved mean post-operative refraction SE of -0.073±1.45D and -0.93±1.70 D, respectively. But only 54 (60%) eyes were implanted with the calculated IOL power and for the remaining 40% the calculated IOL was not available at the store. And the target (Good) post-operative uncorrected visual acuity (UCVA) and best corrected visual acuity (BCVA) was achieved in 66.7% and 82.2% eyes, respectively.

Conclusion: The post-operative refractive outcome after cataract surgery at the center is low. For over one-third of operated eyes, the calculated IOL was not implanted due to the absence of the required IOL power at the store and, therefore, a wide range of IOL power should be available at the center.

Background: Testicular cancer and its treatment can have major short- and long-term effects on the health-related quality of life of those affected. This systematic review aims to summarise patient-reported outcome (PRO) data concerning health-related quality of life, functional impacts and common side-effects of treatments for testicular cancer.

Methods: We systematically searched Medline OVID, CINAHL, PubMed, Embase and the Patient-Reported Outcomes Over Time In Oncology (PROMOTION) databases from inception to 25 March 2020, using "testicular cancer" and "PRO" search terms developed in conjunction with a medical librarian. Two authors screened abstracts and full-text articles for studies that reported primary PRO data related to the treatment of testicular cancer including at least 50 participants. We excluded psychosocial data as this was included in our companion review. Data were extracted by three reviewers, and quality was assessed by two reviewers using QUAL-SYST. Studies with a quality of score over 65% were included in our narrative synthesis.

Results: A total of 1831 records were identified via our database searches and 41 met inclusion criteria. Of these, 35 included participants who had chemotherapy. Twenty-eight different PRO measures were used across the 41 studies. Of the 41 studies, 29 had quality scores over 65% and were included in our narrative synthesis. We found that chemotherapy was generally associated with a higher side-effect burden than other treatments, and higher burden was associated with higher doses of chemotherapy. Hearing problems, peripheral neuropathy, and Raynaud's phenomena were particularly common side-effects. Problems with sexual functioning were associated with chemotherapy, radiotherapy and surgery.

Discussion: While many studies found that between-treatment differences resolved within the first 12 months since diagnosis, there were many long-term and dose-dependent impacts associated with chemotherapy and radiotherapy across PRO domains. Offering information about these aspects, and information about expected survival outcomes, will help inform, prepare, and empower patients to make decisions about treatment aligned with their preferences and personal situations.

Introduction: In patients with COPD, the COPD Assessment Test (CAT), Clinical COPD Questionnaire (CCQ), Hospital Anxiety and Depression Scale (HADS) and EuroQol 5D (EQ-5D-3L) are widely used patient reported outcome measures (PROMs) of respiratory symptoms, anxiety, depression and quality of life. Despite established validity, responsiveness and minimal important change (MIC), the reproducibility and especially important agreement parameters remain unreported in these frequently used PROMs. The aim of this study was to investigate the inter-day test-retest reliability and agreement of the CAT, CCQ, HADS and EQ-5D-3L in patients with severe and very severe COPD (FEV1 <50%) eligible for hospital-based pulmonary rehabilitation.

Patients and methods: Fifty patients (22 females, mean [SD] age 67 [9] yrs.; FEV₁ 32[9] %; 6-minute walk distance 347 [102] meters; CAT 21 [6] points; BMI: 26 [6] kg/m²) completed the questionnaires (CAT, CCQ, HADS, EQ-5D-3L) in combination with functional performance test instructed by one assessor on test-day one (T1) and by another assessor 7-10 days later on test-day two (T2).

Results: The inter-day test-retest reliability ICC was 0.88 (LL_95CI: 0.80) for CAT; 0.69 (LL_95CI: 0.46) for CCQ; 0.86 (LL_95CI: 0.75) and 0.90 (LL_95CI: 0.82) for HADS-anxiety (A) and depression (D) and 0.87 (LL_95CI: 0.76) for EQ-5D-VAS. The corresponding agreements within a single measurement (standard error of measurement, SEM) and for repeated measurement errors (smallest real difference, SRD) were respectively 2.1 and 2.9 points for CAT; 0.5 and 0.7 points for CCQ total; 1.3 and 1.9 points for HADS-A; 0.9 and 1.3 points for HADS-D and 6.8 and 9.7 VAS-score for EQ-5D-3L, respectively. Ceiling/flooring effect was present in <5% for all questionnaires.

Conclusion: In patients with severe and very severe COPD, the CAT, CCQ, HADS and EQ-5D-3L questionnaires presented moderate to excellent inter-day test-retest reliability, and no floor or ceiling effect was documented for any of the questionnaires. Only CAT and HADS had an acceptable SRD below the established MIC for assessing change over time on group level, and none of the PROMS were fit to assess individual changes over time.

Background: Patient-centered care is a practice of caring for patients in ways that are valuable to the individual patient and families. Implementation of the practice is a common problem worldwide. In Ethiopia, the available information is limited and is largely skewed to certain dimensions of the practice.

Objective: To assess the patient-centered health care practice and associated factors among public and private general hospitals of Addis Ababa 2020.

Methods: An institution-based comparative cross-sectional study was conducted in two public, and seven private general hospitals located in Addis Ababa from April 08 to May 20, 2020. A multistage sampling technique was employed to select the study participants. Data were collected using an interviewer-administered structured questioner, then entered into Epi-data version 3.1, and finally analyzed using SPSS version 25. Multivariable logistic regression was used to identify independent predictors of clients' perceived patient-centered care. Statistical significance was declared at p-value <0.05 and adjusted odds ratio with 95% confidence interval.

Results: A total of 570 patients were involved with 99.8% response rate. About 49% (95% CI: 45.0-53.1) of patients rated the practice as good. It was 27.8% (95% CI: 22.5-33.1), and 70.2% (95% CI: 64.6-75.4) for public, and private hospitals, respectively Hospital type (AOR:0.21; 95% CI: 0.13-0.35), service easiness (AOR:3.3; 95% CI: 2.0-5.8), hospital attractiveness (AOR:2.3; 95% CI: 1.2,4.5), privacy to access care (AOR:2.0; 95% CI: 1.1,4.1), information on plan of care (AOR:2.3; 95% CI; 1.1,4.6), information on medication (AOR:3.1; 95% CI; 1.5,6.3), and perceived intimacy with the provider (AOR: 0.4; 95% CI;0.2,0.8) were the factors associated with the practice.

Conclusion: Even though providing patient-centered care has been the focus of quality improvement in Ethiopia, this study showed it is mostly being implemented from the traditional provider-centered approach and public hospitals were lower in practice than private hospitals.

Purpose: Deriving health utilities for rare medical conditions such as aromatic L-amino acid decarboxylase (AADC) deficiency poses challenges. The rarity of AADC deficiency and the fact that this genetic condition often presents in very young children means that robust utility values cannot be derived from the child or their parent/caregiver. Alternative approaches, eg, discrete choice experiments (DCE), are required in order to provide health utilities. The aim of the study was to generate health utilities for AADC deficiency using a DCE.

Methods: The DCE was completed online by panel participants from a UK representative sample. The DCE comprised 6 AADC deficiency attributes (2-6 levels): mobility, muscle weakness, oculogyric crises, feeding ability, cognitive impairment and screaming. These were identified from published literature, clinician input, parent interviews and expert opinion. Participants were presented with 10 choice sets specified using an orthogonal design, including a repeat task to evaluate choice consistency. Participants were presented with 5 health state vignettes prior to the DCE. These were used to elicit time trade-off (TTO) utilities. Multinomial logit models were estimated for the DCE data. The TTO utilities for the worst/best health states were used as anchors to convert indirect DCE part-worth utilities to health utilities.

Results: A total of 1596 participants completed the DCE. The majority (70.7%) gave consistent responses to the repeated choice task; only 1.7% (27) always chose the same alternative for every choice set. Five models were evaluated. There was one preference reversal ("sitting unaided"/"standing with assistance") occurring in all models; these two mobility level coefficients were set to be equal in the final model. Rescaled utilities ranged from 0.494 to 0.7279, corresponding to the worst (633233) and best (111111) health states.

Conclusion: Health utilities were derived for AADC deficiency through a DCE. These will be used for a cost-effectiveness model of an AADC deficiency treatment.

Objective: To determine among a sample of Australian cancer patients receiving outpatient oncology care: 1) the most frequently endorsed general health service improvements selected by patients; 2) for the three most endorsed general health service improvements, the proportion of participants endorsing specific health service changes; and 3) sociodemographic, disease and treatment characteristics associated with the most frequently endorsed general health service improvements.

Methods: A cross-sectional survey was conducted across six outpatient oncology treatment units located in New South Wales, Australia. Patients receiving chemotherapy for any cancer diagnosis at any of six oncology services were recruited. Participants completed an online survey which included the Consumer Preferences Survey. Logistic regression analyses were conducted to identify sociodemographic, disease and treatment characteristics associated with frequently endorsed health service improvements.

Results: A total of 879 eligible patients initiated the survey (72% consent rate). Participants selected a median of two health service improvements. The three most wanted improvements were car parking (56%), up-to-date information about treatment or condition progress (19%), and hospital catering (17%). Age was the only characteristic significantly associated with identifying car parking as a needed improvement.

Conclusion: Achieving high quality cancer care requires understanding of the views and experiences of patients about the quality of care they receive. Car parking and access to information were the two most frequently endorsed general health service changes desired by this sample of participants.

Practice implication: Future studies could examine whether enacting changes as per patient feedback improves patient perceptions of quality of care, and health outcomes.

Hip dysplasia is a significant public health issue, representing the single largest cause for total hip arthroplasty in young adults. To gain insight into patient concerns and the impact of hip dysplasia on young adults, we developed a patient-centred outcome measure, the 'Quality of Life Impact and Concerns' (QoLI&C) measure. This short report provides additional evidence on test-retest reliability and suggests refinements to the measure to enhance its research and clinical utility.

Background: The Ostomy Adjustment Scale (OAS), which consists of an overall sum score along with 34 single-item scores, has been frequently used to measure self-reported adjustment to life with an ostomy. However, it is unknown whether the OAS can be divided into meaningful thematic subscales that may make it easier to administer and to apply in a clinical feedback system.

Purpose: The purpose of this study was to specify thematic OAS subscales and evaluate their psychometric properties.

Patients and methods: A cross-sectional study was conducted with 302 patients across Norway having colostomy, ileostomy, or urostomy. The OAS items were divided into different subscales by expert nurses and patients based on clinical and theoretical considerations. The overall structural validity of this analysis of the OAS was examined using robust confirmatory factor analysis. We evaluated the overall goodness of fit using the root mean square error of approximation (RMSEA), the comparative fit index (CFI) and the Tucker-Lewis index (TLI). Factor loadings from the confirmatory factor analysis were used to calculate composite reliability values for the new OAS scales.

Results: The OAS was divided into seven subscales. The overall structure validity was acceptable with RMSEA = 0.053 (90% CI, 0.045-0.060), CFI = 0.913 and TLI = 0.904. The composite reliability values of all scales were >0.70.

Conclusions: The OAS can be divided into seven clinically meaningful subscales with acceptable psychometric properties.

Trial register: ClinicalTrials.gov Registration Number: NCT03841071. Date 18. February 2019 retrospectively registered.