Patient Related Outcome Measures最新文献

Purpose: Achieving and maintaining symptom control is a key treatment goal in ulcerative colitis (UC). Bowel urgency is an important symptom of UC, thus measurement of urgency is critical. This research explored the patient experience of UC and "remission" in UC, with a focus on urgency, and cognitively debriefed the Urgency Numeric Rating Scale (NRS), including score interpretation and examination of meaningful improvement.

Patients and methods: Semi-structured hybrid concept elicitation and cognitive debriefing interviews with adults with moderately-severely active UC were conducted to explore experiences of UC and urgency, as well as examine meaningful improvement and score interpretation of the Urgency NRS. Purposive sampling was used to identify 20 eligible adult participants with UC. Concept elicitation data were analyzed using thematic analysis, and a deductive approach was used to analyze cognitive debriefing data. Thematic analysis was also applied to meaningful change-related data.

Results: Twenty participants were interviewed (average age = 42.6 years old, 50% male); 14 with moderately active (70.0%) and 6 with severely active UC (30.0%). Disease remission was not consistently defined by participants and description varied in terms of definition (absence vs not complete absence of symptoms), duration (months vs days) and key symptoms to consider. Urgency was a prominent symptom for all participants, with 8 (40.0%) identifying it as the most bothersome aspect of UC. No issues were identified with the Urgency NRS. Participants were able to define different levels of urgency severity, describe how they relate to daily life impacts, and score them differently on the Urgency NRS. Participants were also able to reflect urgency improvement on the NRS and discuss how small changes in numeric ratings of urgency can reflect meaningful change in the symptom burden of their UC.

Conclusion: The Urgency NRS is a content valid and interpretable measure to assess bowel urgency severity.

Purpose: Patient-oriented research (POR) and patient engagement (PE) has highlighted the value of incorporating patients' ideas and priorities in health research. Using the guiding principles of POR and PE, the current study conducted PE sessions to gain insight on the perceptions of mothers regarding the costs of infant feeding.

Methods: Four patient engagement sessions were held with mothers residing in Newfoundland and Labrador between November 2019 and January 2020. Mothers were targeted through the Brighter Futures Coalition of St. John's, a not-for-profit community organization. PE sessions were designed in a two-hour format, allowing the research team to engage mothers and identify costs of infant feeding from a mothers' perspective.

Results: Through the guiding principles of patient-oriented research and patient engagement, our research team successful engaged with mothers in discussions surrounding the costs of infant feeding. The sessions allowed for an in-depth discussion surrounding monetary costs (eg, incidentals of breast or formula feeding), the associated costs of infant feeding and the workplace (eg, perceived productivity) and environment impacts (eg, single use plastics). During each session, evaluations were provided to solicit feedback on whether the goals and expectations of mothers had been met, and whether they felt their opinions were heard and understood.

Conclusion: By conducting patient engagement sessions, informed by patient-oriented research guiding principles, we were able to successfully recruit and engage mothers in discussions that led to a better understanding of their perspectives on the costs of infant feeding.

Background: Prostate cancer is a disease of the prostate gland. It is a recognized tumour in men and is common worldwide. It is the second most frequent cancer and the fifth leading cause of death in males worldwide. Worldwide, prostate cancer screening continues to be a highly contested topic with a variety of differences in recommendations for screening uptake. However, for men considered to be at risk, screening continues to be the most effective method for lowering death through early identification of prostate cancer.

Objective: To determine prostate cancer screening practice and associated factors among adult men in public health facilities of Hossana Town, Ethiopia.

Methods: Facility-based cross-sectional design was used. All adult men, whose age >40 years attending public health facilities found in Hossana town were included in this study. From each public health facility, representative numbers of participants who fulfilled inclusion criteria were included in the study. A total of 422 sample sizes of adult men were used. A consecutive sampling technique was used to select study participants in each health facility. An interviewer-administered questionnaire was employed to collect data. Both descriptive and advanced analyses were performed using SPSS software version 26.0. In bivariable analysis, variables with a 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 7.2% (30) of the participants were screened for prostate cancer in this study. Ever heard about prostate cancer [AOR=26 (7.06-96.90)], family history of prostate cancer [AOR=15.5(5.18-46.77)] and awareness of anyone who has undergone prostate cancer screening [AOR= 6.8(1.95-23.64)] were identified independent predictors for prostate screening practice.

Conclusion: In this study, prostate cancer screening practice is low. Ever heard about prostate cancer, family history of prostate cancer and awareness of anyone who has undergone prostate cancer screening were independent predictors of prostate cancer screening practice. Intervention measures aiming to increase awareness about prostate cancer and prostate cancer screening should be done.

Background: Breast cancer survivors are primarily followed up to monitor the effectiveness of treatment and complications and to detect recurrences. Many breast cancer survivors may experience prolonged adverse physical and psychological effects, which should also be addressed at follow-ups. The objective of this study was to develop a brief symptom assessment tool for breast cancer survivors to be used as a guideline for the survivors and all health care professionals conducting the routine follow-up. The second objective was to describe the women's individual experiences with follow-ups.

Methods: A literature review, a focus group of 6 healthcare professionals using a nominal group technique process, and the experience and feedback via qualitative interviews with 16 breast cancer survivors was used to develop the Breast Cancer Survivors Symptom Assessment Checklist (BCS-SC).

Results: The BCS-SC consists of a set of 13 symptoms/burdens and one question. On a scale from 0 (no symptom) to 10 (worst imaginable), survivors indicated the extent to which they experience each symptom. All survivors perceived the annual follow-ups as important, but none prepared for them. Eight of the 16 survivors reported that they had 2 or more of the symptoms/burdens listed in the BCS-SC. However, only one of the survivors had mentioned her symptom to the doctor at follow-up.

Conclusion: The BCS-SC is a comprehensive assessment tool for symptoms/burdens that are common among breast cancer survivors and can aid efforts to optimize their follow-up. Furthermore, the BCS-SC allows for a more patient-initiated and focused consultation, leading to more patient-centered quality care.

We briefly review the history of measuring perceptions of health and quality of life, followed by an examination of conceptual issues related to terminology that have led to potentially conflicting ontologies. Then, we discuss challenges posed by the lack of consensus on common meaning and the proliferation of measures. Next, we suggest a solution grounded in an ontology adopted by the National Institutes of Health (NIH) funded Patient-Reported Outcomes Measurement Information System (PROMIS) project. We conclude by discussing issues associated with mapping the PROMIS domain framework onto other familiar ontologies and recommend a way forward for PROMIS to provide a sustainable ontological structure to enable coherent common measurement.

Background: Doctors constitute a significant proportion of a very large number of medical interactions. They are known to vary in the quality of their work, with some having an exceptionally beneficial effect on patients' physical health. In a qualitative study, we interviewed medical doctors on their opinions and experiences of exceptionally good doctors. Their responses and the results from previous research are used as a basis for this proposed cross-sectional survey directed to members of the public on their encounters with exceptionally good doctors. The primary aim of this cross-sectional study is to describe the characteristics of exceptional doctors as reported by a large representative sample of adult patients.

Methods and analysis: A mixed qualitative and quantitative anonymous cross-sectional survey of 500 Amazon Mechanical Turk (MTurk) respondents, who have met one or more exceptionally good doctors in their life, will be conducted. Information requested will include reasons for nominating a particular doctor; experience of how that doctor differs from other and average doctors; and 34 5-point Likert scale questions on the characteristics of that doctor and the same Likert questions for the average doctor. An opportunity to report their experience in free-text form will be provided. Sample size will be sufficient to obtain a margin of error of 4%. The authors will provide descriptive statistics, including graphs of the Likert scale question responses; conduct factor analysis for internal validity; investigate satisficing and logical inconsistencies; and explore whether there are multiple types of exceptionally good doctors.

Discussion: Previous surveys of patients' perceptions of doctors exist though none have focused on exceptionally good doctors. The expected results will include a list of characteristics that are important to patients in determining exceptionally good doctors.

Purpose: The hemophilia-specific health-related quality of life (HRQOL) questionnaire (Haemo-QOL-A) is validated for detecting QOL changes following standard therapy for hemophilia A, but has not been rigorously evaluated after gene therapy. This post hoc analysis evaluated the psychometric properties of Haemo-QOL-A in adult people with severe hemophilia A (PWSHA) receiving valoctocogene roxaparvovec (AAV5-hFVIII-SQ) in 2 clinical trials (phase 1/2, NCT02576795; phase 3, NCT03370913).

Patients and methods: Adult PWSHA (factor VIII levels ≤1 IU/dL) received 1 AAV5-hFVIII-SQ infusion (6×10¹³ vg/kg). Participants were assessed using the Haemo-QOL-A and the EuroQOL (EQ)-5D-5L and visual analog scale (VAS) questionnaires pre- and post-infusion. Psychometric analyses included convergent and discriminant validity, internal consistency, and reliability. Clinically important difference (CID) was estimated using 3-point change in EQ-5D-5L VAS as anchor.

Results: Haemo-QOL-A data were analyzed from 7 (phase 1/2, 3-year follow-up) and 16 participants (phase 3, 26-week analysis). Change in Haemo-QOL-A Total Scores correlated with EQ-5D-5L VAS score change at 26 weeks (Pearson's correlation 0.77). At 26 weeks, increased Haemo-QOL-A Physical Functioning was associated with decreased EQ-5D-5L Pain and Discomfort and decreased Anxiety and Depression (Spearman's Rank correlations -0.73 and -0.62, respectively, P <0.01). Internal consistency analysis showed good reliability for all domains (Cronbach's alpha >0.7) except Treatment Concern (Cronbach's alpha = 0.31). Anchor-based CID estimates were met for Haemo-QOL-A Total Score (≥5.5) and domain scores (≥6) for Consequences of Bleeding, Physical Functioning, Role Functioning, and Worry.

Conclusion: Our preliminary results suggest that the Haemo-QOL-A is a valid, reliable instrument for HRQOL assessment in PWSHA undergoing gene therapy. Future research should be undertaken to confirm these findings in a larger number of participants.

Introduction: Benign paroxysmal positional vertigo (BPPV) is the most frequently occurring peripheral vestibular disorder. Clinical practice guidelines (CPG) for BPPV exist; however, little is known about how affected patients perceive their condition is being managed. We aimed to leverage registry data to evaluate how adults who report BPPV are managed.

Material and methods: We retrospectively analyzed of data from 1,262 adults (58.4 ± 12.6 years old, 81.1% female, 91.1% White) who were enrolled in the Vestibular Disorders Association Registry from 2014 to 2020. The following patient-reported outcomes were analyzed by proportions for those who did and did not report BPPV: symptoms experienced, falls reported, diagnostics undertaken, interventions received (eg, canalith repositioning maneuvers [CRMs], medications), and responses to interventions.

Results: Of the 1,262 adults included, 26% reported being diagnosed with BPPV. Many adults who reported BPPV (83%) also endorsed receiving additional vestibular diagnoses or may have had atypical BPPV. Those with BPPV underwent magnetic resonance imaging and were prescribed medications more frequently than those without BPPV (76% vs 57% [χ²=36.51, p<0.001] and 85% vs 78% [χ²=5.60, p=0.018], respectively). Falls were experienced by similar proportions of adults with and without BPPV (55% vs 56% [χ²⁼=11.26, p=0.59]). Adults with BPPV received CRMs more often than those without BPPV (86% vs 48%, χ²=127.23, p<0.001). More registrants with BPPV also endorsed benefit from CRMs compared to those without BPPV (51% vs 12% [χ²=105.30, p<0.001]).

Discussion: In this registry, BPPV was often reported with other vestibular disorders. Healthcare utilization was higher than would be expected with care based on the CPG. The rates of falls in those with and without BPPV are higher than previously reported. Adults with BPPV reported significant differences in how their care is managed and their overall outcomes compared to those without BPPV.

Conclusion: Patient-reported outcomes provide useful information regarding the lived experience of adults with BPPV.