scholarly journals Patient-Reported Outcome Measures and Clinical Outcomes in Children with Foregut Anomalies

Children ◽  
2021 ◽  
Vol 8 (7) ◽  
pp. 587
Author(s):  
Isabel I. Sreeram ◽  
Chantal A. ten Kate ◽  
Joost van Rosmalen ◽  
Johannes M. Schnater ◽  
Saskia J. Gischler ◽  
...  

Increasing numbers of children and adults with chronic disease status highlight the need for a value-based healthcare system. Patient-reported outcome measures (PROMs) are essential to value-based healthcare, yet it remains unclear how they relate to clinical outcomes such as health and daily functioning. We aimed to assess the added value of self-reported PROMs for health status (HS) and quality of life (QoL) in the long-term follow-up of children with foregut anomalies. We evaluated data of PROMs for HS and/or QoL among eight-year-olds born with congenital diaphragmatic hernia (CDH), esophageal atresia (EA), or congenital lung malformations (CLM), collected within the infrastructure of a multidisciplinary, longitudinal follow-up program. Clinical outcomes were categorized into different outcome domains, and their relationships with self-reported HS and QoL were assessed through multivariable linear regression analyses. A total of 220 children completed HS and/or QoL self-reports. In children with CDH and EA, lower cognition was significantly associated with lower self-reported HS. Due to the low number of cases, multivariable linear regression analysis was not possible in children with CLM. HS, QoL, and clinical outcomes represent different aspects of a child’s wellbeing and should be measured simultaneously to facilitate a more holistic approach to clinical decision making.

Informatics ◽  
2021 ◽  
Vol 8 (3) ◽  
pp. 56
Author(s):  
Deepika Verma ◽  
Kerstin Bach ◽  
Paul Jarle Mork

The field of patient-centred healthcare has, during recent years, adopted machine learning and data science techniques to support clinical decision making and improve patient outcomes. We conduct a literature review with the aim of summarising the existing methodologies that apply machine learning methods on patient-reported outcome measures datasets for predicting clinical outcomes to support further research and development within the field. We identify 15 articles published within the last decade that employ machine learning methods at various stages of exploiting datasets consisting of patient-reported outcome measures for predicting clinical outcomes, presenting promising research and demonstrating the utility of patient-reported outcome measures data for developmental research, personalised treatment and precision medicine with the help of machine learning-based decision-support systems. Furthermore, we identify and discuss the gaps and challenges, such as inconsistency in reporting the results across different articles, use of different evaluation metrics, legal aspects of using the data, and data unavailability, among others, which can potentially be addressed in future studies.


2019 ◽  
Vol 47 (4) ◽  
pp. 870-875 ◽  
Author(s):  
Jody M. Litrenta ◽  
Brian H. Mu ◽  
Austin W. Chen ◽  
Itay Perets ◽  
Victor Ortiz-Declet ◽  
...  

Background: The success of hip arthroscopy has led to increased application in younger populations. However, hip arthroscopy remains a challenging procedure, and its safety and efficacy in the adolescent population have been controversial. Most existing literature on outcomes in such patients contains only short-term follow-up, and a paucity of evidence is available regarding long-term outcomes in adolescents. Purpose: To report on clinical outcomes at a minimum 5-year follow-up in patients younger than 18 years who underwent arthroscopic treatment of labral tears. Study Design: Case series; Level of evidence, 4. Methods: Data were prospectively collected and retrospectively reviewed on all patients younger than 18 years who underwent hip arthroscopy in a tertiary hip preservation setting at a single institution. Patients were excluded if they had previous ipsilateral hip conditions or surgery. All patients underwent either labral repair or debridement for treatment of a labral tear. Patient-reported outcome measures were recorded at 3 months and at 1, 2, or a minimum of 5 years. These included the modified Harris Hip Score (mHHS), Nonarthritic Hip Score, Hip Outcome Score–Sports Specific Subscale (HOS-SSS), visual analog scale, and patient satisfaction. Additionally, the abbreviated International Hip Outcome Tool and Short Form Health Survey were collected at latest follow-up. Results: The study included 44 hips in 32 patients that underwent arthroscopic labral repair (86.4%) or labral debridement (13.6%) between April 2008 and April 2011, with latest follow-up at a mean of 69.2 months (range, 60.0-89.9 months) postoperatively. The average age at surgery was 16.3 years (range, 14.2-17.9 years), and 39 hips from female patients. Statistically significant improvements were seen in all patient-reported outcome measures from preoperative to minimum 5-year follow-up. Improvements were noted at 1-year follow-up and maintained at minimum 5-year follow-up. At the latest follow-up, the Patient Acceptable Symptomatic State was achieved in 95.5% of patients for the mHHS and 72.7% for the HOS-SSS. Two patients subsequently underwent secondary arthroscopy on the ipsilateral hip; however, the survivorship of all hips was 100%. Conclusion: Hip arthroscopy for the treatment of labral tears in adolescents remains a technically challenging procedure that should be approached with appropriate caution. The results of the present study on a population treated in a specialized hip preservation center demonstrate that hip arthroscopy is a safe procedure with stable improvement in patient-reported outcome measures at 5 years.


Author(s):  
Gareth S. Turnbull ◽  
Claire Marshall ◽  
Jamie A. Nicholson ◽  
Deborah J. MacDonald ◽  
Nicholas D. Clement ◽  
...  

Abstract Introduction The Olympia femoral stem is a stainless steel, anatomically shaped, polished and three-dimensionally tapered implant designed for use in cemented total hip arthroplasty (THA). The primary aim of this study was to determine the long-term survivorship, radiographic outcome, and patient-reported outcome measures (PROMs) of the Olympia stem. Patients and methods Between May 2003 and December 2005, 239 patients (264 THAs) underwent a THA with an Olympia stem in our institution. Patient-reported outcome measures were assessed using the Oxford Hip Score (OHS), EuroQol-5 dimensions (EQ-5D) score, and patient satisfaction at mean 10 years following THA. Patient records and radiographs were then reviewed at a mean of 16.5 years (SD 0.7, 15.3–17.8) following THA to identify occurrence of complications or revision surgery for any cause following surgery. Radiographs were assessed for lucent lines and lysis according to Gruen’s zones Results Mean patient age at surgery was 68.0 years (SD 10.9, 31–93 years). There were 156 women (65%, 176 THAs). Osteoarthritis was the indication for THA in 204 patients (85%). All cause stem survivorship at 10 years was 99.2% (95% confidence interval [CI], 97.9%–100%) and at 15 years was 97.5% (94.6%–100%). The 15-year stem survival for aseptic loosening was 100%. Analysis of all-cause THA failure demonstrated a survivorship of 98.5% (96.3%–100%) at 10 years and 95.9% (92.4%–99.4%) at 15 years. There were 9 THAs with non-progressive lucent lines in a single Gruen zone and 3 had lines in two zones, and no patient demonstrated signs for lysis. At a mean of 10-year (SD 0.8, 8.7–11.3) follow-up, mean OHS was 39 (SD 10.3, range 7–48) and 94% of patients reported being very satisfied or satisfied with their THA. Conclusions The Olympia stem demonstrated excellent 10-year PROMs and very high rates of stem survivorship at final follow-up beyond 15 years.


10.2196/15588 ◽  
2020 ◽  
Vol 3 (1) ◽  
pp. e15588 ◽  
Author(s):  
Jill Meirte ◽  
Nick Hellemans ◽  
Mieke Anthonissen ◽  
Lenie Denteneer ◽  
Koen Maertens ◽  
...  

Background Patient-reported outcome measures (PROMs) are important in clinical practice and research. The growth of electronic health technologies provides unprecedented opportunities to systematically collect information via PROMs. Objective The aim of this study was to provide an objective and comprehensive overview of the benefits, barriers, and disadvantages of the digital collection of qualitative electronic patient-reported outcome measures (ePROMs). Methods We performed a systematic review of articles retrieved from PubMED and Web of Science. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines were followed during all stages. The search strategy yielded a total of 2333 records, from which 32 met the predefined inclusion and exclusion criteria. The relevant ePROM-related information was extracted from each study. Results Results were clustered as benefits and disadvantages. Reported benefits of ePROMs were greater patient preference and acceptability, lower costs, similar or faster completion time, higher data quality and response rates, and facilitated symptom management and patient-clinician communication. Tablets were the most used ePROM modality (14/32, 44%), and, as a platform, Web-based systems were used the most (26/32, 81%). Potential disadvantages of ePROMs include privacy protection, a possible large initial financial investment, and exclusion of certain populations or the “digital divide.” Conclusions In conclusion, ePROMs offer many advantages over paper-based collection of patient-reported outcomes. Overall, ePROMs are preferred over paper-based methods, improve data quality, result in similar or faster completion time, decrease costs, and facilitate clinical decision making and symptom management. Disadvantages regarding ePROMs have been outlined, and suggestions are provided to overcome the barriers. We provide a path forward for researchers and clinicians interested in implementing ePROMs. Trial Registration PROSPERO CRD42018094795; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=94795


2019 ◽  
Vol 4 (4) ◽  
pp. 2473011419S0037
Author(s):  
Andrew Schwartz ◽  
Shuo Niu ◽  
Faris Mirza ◽  
Ashley Thomas ◽  
Sameh Labib

Category: Ankle, Arthroscopy, Sports, Trauma Introduction/Purpose: Talar osteochondral lesion (TOCL) is a common problem in the young athletic population, mostly related to trauma. TOCL surgical treatment algorithm remains controversial, though results are improving as we gain experience. The results of TOCL surgical treatment on function and return to sport are promising, but quantified return to sport metrics remain largely unknown. Methods: A total of 156 consecutive patients following TOCL chondroplasty (10/1/2000-5/31/2018) by a single practice were retrospectively reviewed and included in this study. There were 54.5% female with a mean age 38.2 years, and mean follow-up 40.2 months following the index surgery. Patients were divided into four groups according to the type of chondroplasty performed: Antegrade arthroscopic drilling and/or microfracture (antegrade, 83 patients), retrograde arthroscopic drilling (retrograde, 35 patients), osteochondral autograft transfer (OATS, 26 patients), and allograft cartilage implantation (allograft, 12 patients). VAS scores for pain and function at the final clinic visit were collected. Patient-reported outcome measures including the short form-12 (SF-12), The Foot and Ankle Disability Index Sports Module (FADI-sports), Tegner score, Marx scale, Naal’s Sports inventory are also actively being collected. Results: Nearly 75% of patients are satisfied with surgical intervention of TOCLs. Allograft transplant was the least satisfying (71.4%), while OATS was the most satisfying (90%). Each surgical intervention yielded significantly decreased pain and increased function postoperatively (all p<0.001). Currently, 57 patients (36%) provided patient-reported outcome measures, with an average follow up of 79.8 months (Table 1). All surgical interventions trended toward decreased Tegner score, though only antegrade drilling showed a significant decrease (p<0.001). Based on Naal’s sports inventory, 85.7% of surgically treated patients reported participating in sport activities, on average 3 times/week and 50.6 minutes/session. Conclusion: Traditionally, TOCLs presented a difficult problem that is marred by unsatisfactory surgical outcomes in typically active patients. As our surgical understanding has evolved, we’ve continued to improve on outcomes. Our patients demonstrated a 74.5% satisfaction rate, a statistically significant improvement in pain and function, and a high rate of return to sport with little difference between surgical interventions at a long-term follow-up.


2019 ◽  
Vol 7 (4) ◽  
pp. 484-492
Author(s):  
Claire Tilbury ◽  
Claudia S Leichtenberg ◽  
Bart L Kaptein ◽  
Lennard A Koster ◽  
Suzan H M Verdegaal ◽  
...  

Background: Compliance rates with patient-reported outcome measures (PROMs) collected alongside arthroplasty registries vary in the literature. We described the feasibility of a routinely collected set PROMs alongside the Dutch Arthroplasty Register. Methods: The longitudinal Leiden Orthopaedics Outcomes of OsteoArthritis Study is a multicenter (7 hospitals), observational study including patients undergoing total hip or total knee arthroplasty (THA or TKA). A set of PROMs: Short Form-12, EuroQol 5 Dimensions, Hip/Knee injury and Osteoarthritis Outcome Score, Oxford Hip/Knee Score was collected preoperatively and at 6, 12, 24 months, and every 2 years thereafter. Participation rates and response rates were recorded. Results: Between June 2012 and December 2014, 1796 THA and 1636 TKA patients were invited, of whom 1043 THA (58%; mean age 68 years [standard deviation, SD: 10]) and 970 TKA patients (59%; mean age 71 years [SD 9.5]) participated in the study. At 6 months, 35 THA/38 TKA patients were lost to follow-up. Response rates were 90% for THA (898/1000) and 89% for TKA (827/932) participants. At 1 and 2 years, 8 and 18 THA and 17 and 11 TKA patients were lost to follow-up, respectively. The response rates among those eligible were 87% (866/992) and 84% (812/972) for THA and 84% (771/917) and 83% (756/906) for TKA patients, respectively. The 2-year questionnaire was completed by 78.5% of the included THA patients and by 77.9% of the included TKA patients. Conclusions: About 60% of patients undergoing THA or TKA complete PROMs preoperatively, with more than 80% returning follow-up PROMs. To increase the participation rates, more efforts concerning the initial recruitment of patients are needed.


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