patient reported outcome
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2022 ◽  
Vol 6 (1) ◽  
Author(s):  
Jonathan Davis ◽  
Kristan Olazo ◽  
Maribel Sierra ◽  
Michelle E. Tarver ◽  
Brittany Caldwell ◽  
...  

Abstract Background The Kansas City Cardiomyopathy Questionnaire (KCCQ) is a Patient-Reported Outcome Measure (PROM) used to evaluate the health status of patients with heart failure (HF) but has predominantly been tested in settings serving predominately white, male, and economically well-resourced populations. We sought to examine the acceptability of the shorter version of the KCCQ (KCCQ-12) among racially and ethnically diverse patients receiving care in an urban, safety-net setting. Methods We conducted cognitive interviews with a diverse population of patients with heart failure in a safety net system to assess their perceptions of the KCCQ-12. We conducted a thematic analysis of the qualitative data then mapped themes to the Capability, Opportunity, Motivation Model of Behavior framework. Results We interviewed 18 patients with heart failure and found that patients broadly endorsed the concepts of the KCCQ-12 with minor suggestions to improve the instrument’s content and appearance. Although patients accepted the KCCQ-12, we found that the instrument did not adequately measure aspects of health care and quality of life that patients identified as being important components of managing their heart failure. Patient-important factors of heart failure management coalesced into three main themes: social support, health care environment, and mental health. Conclusions Patients from this diverse, low-income, majority non-white population experience unique challenges and circumstances that impact their ability to manage disease. In this study, patients were receptive to the KCCQ-12 as a tool but perceived that it did not adequately capture key health components such as mental health and social relationships that deeply impact their ability to manage HF. Further study on the incorporation of social determinants of health into PROMs could make them more useful tools in evaluating and managing HF in diverse, underserved populations.


2022 ◽  
Vol 6 (1) ◽  
Author(s):  
Yanfen Guan ◽  
Allison M. Nguyen ◽  
Samantha Wratten ◽  
Sharan Randhawa ◽  
Jessica Weaver ◽  
...  

Abstract Purpose Endometriosis is a chronic disorder of the female reproductive system characterized by debilitating symptoms, particularly endometriosis-related pain (ERP). Patient-reported outcome (PRO) measures of symptoms and impacts are required to assess disease severity in ERP clinical studies and clinical practice. A content-valid instrument was developed by modifying the Dysmenorrhea Daily Diary (DysDD) to form the Endometriosis Daily Diary (EDD), an electronic PRO administered via handheld device. Methods Qualitative research with US females with ERP was conducted in three stages: (1) Development of an endometriosis conceptual model based on qualitative literature and conduct of concept elicitation (CE) interviews (N = 30). (2) Cognitive debriefing (CD) interviews (N = 30) conducted across two rounds to assess relevance and understanding of the EDD, with modifications between interview rounds. (3) Pilot testing to assess usability/feasibility of administrating the EDD daily on an electronic handheld device (N = 15). Clinical experts provided guidance throughout the study. Results The conceptual model provided a comprehensive summary of endometriosis to inform modifications to the DysDD, forming the EDD. CD results demonstrated that EDD items were relevant for most participants. Instructions, items, response scales, and recall period were well-understood. The resulting daily diary assesses severity of cyclic and non-cyclic pelvic pain, dyspareunia, impact of ERP on functioning and daily life, symptoms associated with ERP, and bowel symptoms. Participants were able to complete the diary daily and found the device easy to use. Conclusion The EDD demonstrated good content validity in females experiencing ERP. The next step is to perform psychometric validation in an ERP sample.


Diagnostics ◽  
2022 ◽  
Vol 12 (1) ◽  
pp. 199
Author(s):  
Marta Mirando ◽  
Corrado Conti ◽  
Federica Zeni ◽  
Fabio Pedicini ◽  
Antonio Nardone ◽  
...  

(1) Background: Ankle fracture results in pain, swelling, stiffness and strength reduction, leading to an altered biomechanical behavior of the joint during the gait cycle. Nevertheless, a common pattern of kinematic alterations has still not been defined. To this end, we analyzed the literature on instrumental gait assessment after ankle fracture, and its correlation with evaluator-based and patient-reported outcome measures. (2) Methods: We conducted a systematic search, according to the Preferred Reporting Items for Systematic Reviews and Meta-analyses guidelines, of articles published from January 2000 to June 2021 in PubMed, Embase and PEDro on instrumental gait assessment after ankle fracture. (3) Results: Several changes in gait occur after ankle fracture, including a reduction in step length, swing time, single support time, stride length, cadence, speed and an earlier foot-off time in the affected side. Additionally, trunk movement symmetry (especially vertical) is significantly reduced after ankle fracture. The instrumental assessments correlate with different clinical outcome measures. (4) Conclusions: Instrumental gait assessment can provide an objective characterization of the gait alterations after ankle fracture. Such assessment is important not only in clinical practice to assess patients’ performance but also in clinical research as a reference point to evaluate existing or new rehabilitative interventions.


Author(s):  
Benson S. Chen ◽  
Tomasz Galus ◽  
Stephanie Archer ◽  
Valerija Tadić ◽  
Mike Horton ◽  
...  

Abstract Purpose To identify and comprehensively evaluate studies capturing the experience of individuals affected by an inherited optic neuropathy (ION), focusing on patient-reported outcome measures (PROMs) and qualitative studies where the health status and quality of life (QoL) of these individuals have been explored. Methods Systematic review of five databases using a search strategy combining four concepts: (1) ION; (2) QoL and health status; (3) PROMs; and (4) qualitative research. Studies assessing the impact of ION on any QoL domain using a PROM or qualitative methodology were included and appraised, using criteria based on the COSMIN checklist (for PROM studies) and the CASP checklist (for qualitative studies). Results Of 1326 unique articles identified, six studies were included. Five PROMs were identified: Visual Function Index (VF-14); Hospital Anxiety and Depression Scale (HADS); a novel graphical online assessment tool (NGOAT) for reporting emotional response to vision loss; a new PROM informed by the DSM-V Criteria for Major Depressive Disorder; and an interpersonal and career ‘impact rating’ PROM. The psychometric performance of included PROMs were poorly described. Qualitative studies found that vision loss resulted in psychosocial losses including loss of social and communication skills and loss of independence and freedom. Factors that modified the response to vision loss were also identified. Conclusion The current PROMs used by individuals with ION have poor content coverage, primarily measuring activity limitation and emotional well-being, and insufficient reporting of psychometric performance. There is a need to develop a PROM for individuals ION to report their experiences of living with their condition.


Author(s):  
Bernardo Sousa-Pinto ◽  
João Fonseca ◽  
Bilun Gemicioglu ◽  
Frederico Regateiro ◽  
Nicola Scichilone ◽  
...  

Author(s):  
Matthew Scott-Young ◽  
Evelyne Rathbone ◽  
Lauren Grierson

Abstract Background According to published meta-analyses, cervical total disc replacement (CTDR) seems to be superior to anterior cervical decompression and fusion (ACDF) in most clinical parameters. Despite short-term clinical success of CTDR, there are concerns regarding long-term durability of these prostheses. Methods This prospective study involved 382 patients who received standalone CTDR or a hybrid procedure (ACDF/CTDR). A retrospective comparison between different CTDR devices was conducted regarding patient-reported outcome measures (PROMs), failure scenarios, and revision surgeries. The M6-C™ Artificial Cervical Disc (Orthofix, Lewisville, Texas) cohort was compared to the other CTDR devices clinically. Etiological reasons for revision, and the surgical technique of the revision was investigated. Results Fifty-three patients received M6-C CTDR. Eighteen patients (34%) were revised at an average of 67 months postoperatively for wear-induced osteolysis. There were three additional cases of pending revision. The PROMs of the two groups were similar, indicating that the failure mode (wear-induced osteolysis) is often asymptomatic. The demographics of the two groups were also similar, with more women undergoing revision surgery than men. There were three one-level CTDR, four two-level hybrids, seven three-level hybrids, and three four-level hybrids revised anteriorly. Sixteen patients underwent removal of the prosthesis and were treated according to the extent of osteolysis. There were four vertebrectomies, six revisions to ACDF, and six revisions to another CTDR. One patient underwent supplemental fixation using a posterior approach. The other CTDR cohort had an incidence of 3.3% at the equivalent time, and none of these were due to osteolysis or wear-related events. Conclusions There is a concerning midterm failure rate related to ultra-high-molecular-weight-polyethylene wear-induced osteolysis in the M6-C. Patients implanted with the M6-C prosthesis should be contacted, informed, and clinically and radiologically assessed.


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