scholarly journals Use of Patient-Reported Experience Measures in Pediatric Care: A Systematic Review

2021 ◽  
Vol 9 ◽  
Author(s):  
Sumedh Bele ◽  
Lorynn Teela ◽  
Muning Zhang ◽  
Sarah Rabi ◽  
Sadia Ahmed ◽  
...  

Introduction: Patient-reported Experience Measures (PREMs) are validated questionnaires, that gather patients' and families' views of their experience receiving care and are commonly used to measure the quality of care, with the goal to make care more patient and family-centered. PREMs are increasingly being adopted in pediatric population, however knowledge gaps exist around understanding the use of PREMs in pediatrics.Objective: To identify and synthesize evidence on the use of PREMs in pediatric healthcare settings and their characteristics.Evidence Review: Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines governed the conduct and reporting of this review. An exhaustive search strategy was applied to MEDLINE, EMBASE, PsycINFO, Cochrane Library, and CINAHL databases to identify relevant peer-reviewed articles from high-income countries. Additionally, gray literature was searched to capture real-world implementation of PREMs. All the articles were screened independently by two reviewers in two steps. Data was extracted independently, synthesized, and tabulated. Findings from gray literature was synthesized and reported separately. Risk of bias for the studies identified through scientific databases was assessed independently by two reviewers using the National Institutes of Health Quality Assessment Tool for Observational Cohort and Cross-Sectional Studies.Results: The initial search identified 15,457 articles. After removing duplicates, the title and abstracts of 11,543 articles were screened. Seven hundred ten articles were eligible for full-text review. Finally, 83 articles met the criteria and were included in the analyses.Of the 83 includes studies conducted in 14 countries, 48 were conducted in USA, 25 in European countries and 10 in other countries. These 83 studies reported on the use of 39 different PREMs in pediatric healthcare settings. The gray literature retrieved 10 additional PREMs. The number of items in these PREMs ranged from 7 to 89. Twenty-three PREMs were designed to be completed by proxy, 10 by either pediatric patients or family caregivers, and 6 by pediatric patients themselves.Conclusion and Relevance: This comprehensive review is the first to systematically search evidence around the use of PREMs in pediatrics. The findings of this review can guide health administrators and researchers to use appropriate PREMs to implement patient and family-centered care in pediatrics.

Author(s):  
Sarah Jean Barton ◽  
Lucy Selman ◽  
Gary Maslow ◽  
Raymond Barfield

This chapter responds to the sparse attention paid to the connections between religion, spirituality, and pediatric quality of life in healthcare settings. Key points of spiritual distress in the context of pediatrics, including intensive care settings, diagnostic meetings, and oncology, are explored. In order to envision a robust embrace of religious and spiritual issues in pediatric care, this chapter analyzes core themes from the perspectives of caregivers and clinicians. Building on these themes as well as current best practices from the literature, this chapter proposes an expanded vision and accompanying concrete practices to improve attention to and integration of religion and spirituality in pediatric care. The chapter concludes that an expansion of creative engagement with the religious and spiritual components of pediatric healthcare would foster more interdisciplinary, holistic practices of care.


2019 ◽  
Vol 2019 ◽  
pp. 1-6 ◽  
Author(s):  
Anuj Jain ◽  
Saumya Taneja

Aim. To conduct a systematic review evaluating the cases of oral submucous fibrosis in pediatric patients. Material and Method. Systematic review was conducted using PRISMA guidelines. The article focused on oral submucous fibrosis in pediatric patients were included. A total of five manuscripts were included in our systematic review. The prevalence of OSMF in pediatric patients, gender distribution, causes, and clinical presentation were reviewed. Results. On systematically reviewing, a total of 10 cases of OSMF in pediatric patients were found. The youngest patient reported to be diagnosed with OSMF was of 2.5 years of age. Female preponderance was noticed. All the patients had the habit of areca nut chewing which subsequently led to fibrosis. Conclusion. Such a rapid increase in the rate of OSMF among pediatric population is a potential danger to the society. The habit of areca nut chewing is the major cause for this dreadful condition. Lack of health consciousness and low level of education are the major factors for initiation of this habit among children. Therefore it is imperative for the parents and school as well as government authorities to take serious actions.


2019 ◽  
Author(s):  
Irushi Ratnayake ◽  
Susannah Ahern ◽  
Rasa Ruseckaite

BACKGROUND Patients with cystic fibrosis (CF) can struggle with burdensome symptoms and treatment regimens that negatively affect every aspect of their life. As physiological parameters can fail to capture these complications, the assessment of health-related quality of life (HRQOL) has gained prominence. HRQOL can be measured using standardized patient questionnaires called patient-reported outcome measures (PROMs). The Australian Cystic Fibrosis Data Registry (ACFDR) collects clinical data on adult and pediatric patients with CF. The incorporation of PROMs into the ACFDR would enable monitoring of HRQOL trends, benchmarking of HRQOL outcomes, and support of HRQOL research in CF. OBJECTIVE Prior to incorporation of a PROM in the ACFDR, this systematic review was planned to evaluate whether any suitable PROMs are currently being used for CF. METHODS This systematic review will be conducted in compliance with the PRISMA-P (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocols) guidelines. MEDLINE, EMBASE, Scopus, CINAHL (Cumulative Index of Nursing and Allied Health Literature), PsycINFO, and Cochrane Library databases were searched for articles published between January 2009 and February 2019 on the use of PROMs to measure HRQOL in adult and pediatric patients with CF. Study designs such as observational studies, reviews and validation studies were included. Studies describing randomized controlled trials, dissertations, books, guideline statements, and abstracts were excluded. The COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) risk of bias checklist was used to assess the methodological quality of included studies. A descriptive synthesis of the results will be undertaken in line with the outcomes of this study. RESULTS As of July 2019, the search has been conducted and 4530 records were screened. After two phases of screening, 97 studies were included in the final review and subjected to data extraction. Reviewers are currently in the process of critical appraisal. CONCLUSIONS This review will identify any PROM(s) that may be used to measure HRQOL in the ACFDR. CLINICALTRIAL PROSPERO International Prospective Register of Systematic Reviews CRD42019126931; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=126931


10.2196/15467 ◽  
2020 ◽  
Vol 9 (5) ◽  
pp. e15467
Author(s):  
Irushi Ratnayake ◽  
Susannah Ahern ◽  
Rasa Ruseckaite

Background Patients with cystic fibrosis (CF) can struggle with burdensome symptoms and treatment regimens that negatively affect every aspect of their life. As physiological parameters can fail to capture these complications, the assessment of health-related quality of life (HRQOL) has gained prominence. HRQOL can be measured using standardized patient questionnaires called patient-reported outcome measures (PROMs). The Australian Cystic Fibrosis Data Registry (ACFDR) collects clinical data on adult and pediatric patients with CF. The incorporation of PROMs into the ACFDR would enable monitoring of HRQOL trends, benchmarking of HRQOL outcomes, and support of HRQOL research in CF. Objective Prior to incorporation of a PROM in the ACFDR, this systematic review was planned to evaluate whether any suitable PROMs are currently being used for CF. Methods This systematic review will be conducted in compliance with the PRISMA-P (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocols) guidelines. MEDLINE, EMBASE, Scopus, CINAHL (Cumulative Index of Nursing and Allied Health Literature), PsycINFO, and Cochrane Library databases were searched for articles published between January 2009 and February 2019 on the use of PROMs to measure HRQOL in adult and pediatric patients with CF. Study designs such as observational studies, reviews and validation studies were included. Studies describing randomized controlled trials, dissertations, books, guideline statements, and abstracts were excluded. The COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) risk of bias checklist was used to assess the methodological quality of included studies. A descriptive synthesis of the results will be undertaken in line with the outcomes of this study. Results As of July 2019, the search has been conducted and 4530 records were screened. After two phases of screening, 97 studies were included in the final review and subjected to data extraction. Reviewers are currently in the process of critical appraisal. Conclusions This review will identify any PROM(s) that may be used to measure HRQOL in the ACFDR. Trial Registration PROSPERO International Prospective Register of Systematic Reviews CRD42019126931; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=126931


Author(s):  
Ashley N. Marshall ◽  
Hayley J. Root ◽  
Tamara C. Valovich McLeod ◽  
Kenneth C. Lam

ABSTRACT Despite a call to incorporate PROMs into all aspects of health care, little is known about which instruments are best-suited for a pediatric patient population with sport-related injury. The objective of this article was to perform a systematic review of the currently available evidence to determine which patient-reported outcome measures (PROMs) are used for pediatric patients with sports-related injuries, and to identify the associated psychometric properties and considerations for clinical utility. We conducted a literature search for articles on PROMs used in the pediatric population through electronic databases and via a manual search of reference lists and authors between 1990 and 2020. Articles were grouped based off of the PROM(s) included, and considerations for clinical utility and psychometric properties were extracted from each article. Thirty-nine articles were included in this review, from which twenty-two PROMs were identified - twelve PROMs were developed specifically for the pediatric population, four were modified versions of an adult scale, and six instruments were adult measures used in a pediatric population. Of the PROMs included in this review, the Oxford Ankle Foot Questionnaire for Children (OxAFQ-C) and the Pediatric Quality of Life Inventory (PedsQL) were the most comprehensive in their development and assessment. Several outcome measures used for pediatric patients had missing or inadequate measurement properties and considerations for clinical utility, particularly in regards to readability, responsiveness and interpretability. Clinicians and researchers should consider the measure's feasibility, acceptability, appropriateness and psychometric psychometric properties when selecting a PROM for use with the pediatric population.


2021 ◽  
Vol 9 ◽  
Author(s):  
Jimena Fuentes-Servín ◽  
Azalia Avila-Nava ◽  
Luis E. González-Salazar ◽  
Oscar A. Pérez-González ◽  
María Del Carmen Servín-Rodas ◽  
...  

Background and Aims: The determination of energy requirements is necessary to promote adequate growth and nutritional status in pediatric populations. Currently, several predictive equations have been designed and modified to estimate energy expenditure at rest. Our objectives were (1) to identify the equations designed for energy expenditure prediction and (2) to identify the anthropometric and demographic variables used in the design of the equations for pediatric patients who are healthy and have illness.Methods: A systematic search in the Medline/PubMed, EMBASE and LILACS databases for observational studies published up to January 2021 that reported the design of predictive equations to estimate basal or resting energy expenditure in pediatric populations was carried out. Studies were excluded if the study population included athletes, adult patients, or any patients taking medications that altered energy expenditure. Risk of bias was assessed using the Quality Assessment Tool for Observational Cohort and Cross-Sectional Studies.Results: Of the 769 studies identified in the search, 39 met the inclusion criteria and were analyzed. Predictive equations were established for three pediatric populations: those who were healthy (n = 8), those who had overweight or obesity (n = 17), and those with a specific clinical situation (n = 14). In the healthy pediatric population, the FAO/WHO and Schofield equations had the highest R2 values, while in the population with obesity, the Molnár and Dietz equations had the highest R2 values for both boys and girls.Conclusions: Many different predictive equations for energy expenditure in pediatric patients have been published. This review is a compendium of most of these equations; this information will enable clinicians to critically evaluate their use in clinical practice.Systematic Review Registration:https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=226270, PROSPERO [CRD42021226270].


Author(s):  
Terri Rebmann ◽  
Rachel L. Charney ◽  
Rebecca L. Eschmann ◽  
M. Colleen Fitzpatrick

Abstract Objective: To assess non-pediatric nurses’ willingness to provide care to pediatric patients during a mass casualty event (MCE). Methods: Nurses from 4 non-pediatric hospitals in a major metropolitan Midwestern region were surveyed in the fall of 2018. Participants were asked about their willingness to provide MCE pediatric care. Hierarchical logistical regression was used to describe factors associated with nurses’ willingness to provide MCE pediatric care. Results: In total, 313 nurses were approached and 289 completed a survey (response rate = 92%). A quarter (25.3%, n = 73) would be willing to provide MCE care to a child of any age; 12% (n = 35) would provide care only to newborns in the labor and delivery area, and 16.6% (n = 48) would only provide care to adults. Predictors of willingness to provide care to a patient of any age during an MCE included providing care to the youngest-age children during routine duties, reporting confidence in calculating doses and administering pediatric medications, working in the emergency department, being currently or previously certified in PALS, and having access to pediatric-sized equipment in the unit or hospital. Conclusion: Pediatric surge capacity is lacking among nurses. Increasing nurses’ pediatric care self-efficacy could improve pediatric surge capacity and minimize morbidity and mortality during MCEs.


2021 ◽  
pp. 019459982198960
Author(s):  
Tiffany V. Wang ◽  
Nat Adamian ◽  
Phillip C. Song ◽  
Ramon A. Franco ◽  
Molly N. Huston ◽  
...  

Objectives (1) Demonstrate true vocal fold (TVF) tracking software (AGATI [Automated Glottic Action Tracking by artificial Intelligence]) as a quantitative assessment of unilateral vocal fold paralysis (UVFP) in a large patient cohort. (2) Correlate patient-reported metrics with AGATI measurements of TVF anterior glottic angles, before and after procedural intervention. Study Design Retrospective cohort study. Setting Academic medical center. Methods AGATI was used to analyze videolaryngoscopy from healthy adults (n = 72) and patients with UVFP (n = 70). Minimum, 3rd percentile, 97th percentile, and maximum anterior glottic angles (AGAs) were computed for each patient. In patients with UVFP, patient-reported outcomes (Voice Handicap Index 10, Dyspnea Index, and Eating Assessment Tool 10) were assessed, before and after procedural intervention (injection or medialization laryngoplasty). A receiver operating characteristic curve for the logistic fit of paralysis vs control group was used to determine AGA cutoff values for defining UVFP. Results Mean (SD) 3rd percentile AGA (in degrees) was 2.67 (3.21) in control and 5.64 (5.42) in patients with UVFP ( P < .001); mean (SD) 97th percentile AGA was 57.08 (11.14) in control and 42.59 (12.37) in patients with UVFP ( P < .001). For patients with UVFP who underwent procedural intervention, the mean 97th percentile AGA decreased by 5 degrees from pre- to postprocedure ( P = .026). The difference between the 97th and 3rd percentile AGA predicted UVFP with 77% sensitivity and 92% specificity ( P < .0001). There was no correlation between AGA measurements and patient-reported outcome scores. Conclusions AGATI demonstrated a difference in AGA measurements between paralysis and control patients. AGATI can predict UVFP with 77% sensitivity and 92% specificity.


2021 ◽  
pp. 019459982199201
Author(s):  
Cullen M. Taylor ◽  
Stephen F. Bansberg ◽  
Michael J. Marino

Objective Reporting patient symptoms due to nasal septal perforation (NSP) has been hindered by the lack of a validated disease-specific symptom score. The purpose of this study was to develop and validate an instrument for assessing patient-reported symptoms related to NSP. Study Design Validation study. Setting A tertiary care center. Methods The Nasal Obstruction Symptom Evaluation (NOSE) scale was used as an initial construct to which 7 nonobstruction questions were added to measure septal perforation symptoms. The proposed NOSE-Perf instrument was distributed to consecutive patients evaluated for NSP, those with nasal obstruction without NSP, and a control group without rhinologic complaints. Questionnaires were redistributed to the subgroup with NSP prior to treatment of the perforation. Results The study instrument was completed by 31 patients with NSP, 17 with only nasal obstruction, and 22 without rhinologic complaint. Internal consistency was high throughout the entire instrument (Cronbach α = 0.935; 95% CI, 0.905-0.954). Test-retest reliability was demonstrated by very strong correlation between questionnaires completed by the same patient at least 1 week apart ( r = 0.898, P < .001). Discriminant validity was confirmed via a receiver operating characteristic ( P < .001, area under the curve = 0.700). The NOSE-Perf scale was able to distinguish among all 3 study groups ( P < .001) and between NSP and nasal obstruction ( P = .024). When used alone, the NOSE scale could not discriminate between NSP and nasal obstruction ( P = .545). Conclusions The NOSE-Perf scale is a validated and reliable clinical assessment tool that can be applied to adult patients with NSP.


2021 ◽  
pp. 014556132110079
Author(s):  
Melonie Anne Phillips ◽  
Meredith Lind ◽  
Gerd McGwire ◽  
Diana Rodriguez ◽  
Suzanna Logan

Head and neck tumors are rare in pediatric patients but should be kept in the differential when a patient presents with a new swelling or mass. One of these tumors is a myxoma, which is an insidiously growing, benign mass originating from the mesenchyme. They most commonly arise in the myocardium but can also develop in facial structures, particularly in the maxilla and mandible. When arising in facial structures, ocular, respiratory, and digestive systems can be affected based on local invasion. Complete surgical resection is curative but can lead to significant morbidity as well. Here, we present a case of a 15-month-old toddler presenting with a paranasal mass, which was ultimately diagnosed as a maxillary myxoma. This tumor is very rare in the pediatric population, especially in the toddler age-group, reminding clinicians to broaden the differential diagnosis when a patient’s course is atypical.


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