783 Scar Revisions: Are We Asking the Right Questions?

2020 ◽  
Vol 41 (Supplement_1) ◽  
pp. S225-S226
Author(s):  
Natalia Ziolkowski ◽  
Jennifer Zuccaro ◽  
Joel Fish
Keyword(s):  
Gold Standard ◽  
Clinical Care ◽  
Phase 1 ◽  
Psychosocial Impact ◽  
Inclusion Criteria ◽  
Large Area ◽  
Specific Patient ◽  
Scar Revision ◽  
Patient Reported ◽  
Time Since Injury

Abstract Introduction Scars have wide-ranging effects on the individual and as such, many seek to have their scars. Currently, there is no gold standard for conducting scar revision consults. Scar-specific patient-reported outcome measures (PROM) are questionnaires created by individuals with scars and encompass all concepts of interest (COI) important to them. PROMs can be used for quality improvement (QI) initiatives to determine if all COI are being asked of patients. SCAR-Q, a new, internationally validated, scar-PROM measuring COI related to scar appearance, symptoms and function, and psychosocial impact was used. The purpose of this QI study was to determine if COI important to patients with scars are routinely asked during scar revision consults. Methods All scar revisions consults from July 1, 2017 to June 30, 2019 were reviewed at a single pediatric hospital using an electronic database. This study represents Phase 1 of the QI study approved by the institution and follows Model for Improvement methodology. Inclusion criteria were: patient aged ≥8 years, had a cutaneous scar, and speak English. Demographic information included: gender, age; and items related to the patient’s scar including etiology, time since injury, location, interventions; COI encompassed by SCAR-Q. Results 162 electronic patient charts were reviewed with 88 meeting inclusion criteria. 45 were females (51.1%) with an average age of 12.6(SD 3.1, 8–20 years) with time since injury scar of 4.0 years (SD4.6,1 month-17 years). Burns, specifically scalds (18,45.0%) were the most common etiology (40,45%). Scars were located predominantly on the face/scalp (34,39.5%), chest (16,18.6%), and arm (15,17.4%). Most patients had no previous scar intervention at the time of the consultation (43, 51.2%). No scar revision consults encompassed all COI as defined by the SCAR-Q with appearance and Symptom/Function questions being more common than Psychosocial (Table 1). Specifically, scar color, hardness/thickness, disliking the scar were the most frequently asked questions (Table 2). Conclusions There is currently no established gold standard for conducting scar revision consults. SCAR-Q, a newly validated scar-specific PROM was used to determine if all questions that are important to individuals with scars were asked during routine scar revision consults. The most common questions asked of individuals with scars were related to appearance followed closely by symptoms/functional implications. Questions related to psychosocial impact are not routinely asked and represent a large area of improvement. Next steps include implementing a scar-specific PROM to ensure that all COI are implemented in routine clinical care. Applicability of Research to Practice This research is applicable to practice as it shows that PROM can be utilized for QI studies including identifying areas that are lacking in scar revision consults.

scholarly journals Patient Experience in Home Respiratory Therapies: Where We Are and Where to Go

2019 ◽  
Vol 8 (4) ◽  
pp. 555 ◽  
Author(s):  
Cátia Caneiras ◽  
Cristina Jácome ◽  
Sagrario Mayoralas-Alises ◽  
José Ramon Calvo ◽  
João Almeida Fonseca ◽  
...  
Keyword(s):  
Clinical Research ◽  
Patient Experience ◽  
Clinical Care ◽  
Research Priorities ◽  
Specific Patient ◽  
Quality Healthcare ◽  
Body Of Knowledge ◽  
Number Of Patients ◽  
Patient Reported ◽  
System Sustainability

The increasing number of patients receiving home respiratory therapy (HRT) is imposing a major impact on routine clinical care and healthcare system sustainability. The current challenge is to continue to guarantee access to HRT while maintaining the quality of care. The patient experience is a cornerstone of high-quality healthcare and an emergent area of clinical research. This review approaches the assessment of the patient experience in the context of HRT while highlighting the European contribution to this body of knowledge. This review demonstrates that research in this area is still limited, with no example of a prescription model that incorporates the patient experience as an outcome and no specific patient-reported experience measures (PREMs) available. This work also shows that Europe is leading the research on HRT provision. The development of a specific PREM and the integration of PREMs into the assessment of prescription models should be clinical research priorities in the next several years.

scholarly journals The Newcastle ENDOPREM™: a validated patient reported experience measure for gastrointestinal endoscopy

2021 ◽  
Vol 8 (1) ◽  
pp. e000653
Author(s):  
Laura J Neilson ◽  
Linda Sharp ◽  
Joanne M Patterson ◽  
Christian von Wagner ◽  
Paul Hewitson ◽  
...  
Keyword(s):  
Psychometric Properties ◽  
Patient Experience ◽  
Clinical Care ◽  
Phase 1 ◽  
Cognitive Interviews ◽  
Phase 2 ◽  
Phase 3 ◽  
Gi Endoscopy ◽  
Patient Reported ◽  
Experience Measure

ObjectivesMeasuring patient experience of gastrointestinal (GI) procedures is a key component of evaluation of quality of care. Current measures of patient experience within GI endoscopy are largely clinician derived and measured; however, these do not fully represent the experiences of patients themselves. It is important to measure the entirety of experience and not just experience directly during the procedure. We aimed to develop a patient-reported experience measure (PREM) for GI procedures.DesignPhase 1: semi-structured interviews were conducted in patients who had recently undergone GI endoscopy or CT colonography (CTC) (included as a comparator). Thematic analysis identified the aspects of experience important to patients. Phase 2: a question bank was developed from phase 1 findings, and iteratively refined through rounds of cognitive interviews with patients who had undergone GI procedures, resulting in a pilot PREM. Phase 3: patients who had attended for GI endoscopy or CTC were invited to complete the PREM. Psychometric properties were investigated. Phase 4 involved item reduction and refinement.ResultsPhase 1: interviews with 35 patients identified six overarching themes: anxiety, expectations, information & communication, embarrassment & dignity, choice & control and comfort. Phase 2: cognitive interviews refined questionnaire items and response options. Phase 3: the PREM was distributed to 1650 patients with 799 completing (48%). Psychometric properties were found to be robust. Phase 4: final questionnaire refined including 54 questions assessing patient experience across five temporal procedural stages.ConclusionThis manuscript gives an overview of the development and validation of the Newcastle ENDOPREM™, which assesses all aspects of the GI procedure experience from the patient perspective. It may be used to measure patient experience in clinical care and, in research, to compare patients’ experiences of different endoscopic interventions.

scholarly journals Validation of novel patient-centred juvenile idiopathic arthritis-specific patient-reported outcome and experience measures (PROMs/PREMs)

2020 ◽  
Author(s):  
Laura E Lunt ◽  
Stephanie Shoop-Worrall ◽  
Nicola Smith ◽  
Gavin Cleary ◽  
Janet McDonagh ◽  
...  
Keyword(s):  
Juvenile Idiopathic Arthritis ◽  
Clinical Care ◽  
Patient Reported Outcome ◽  
Paediatric Rheumatology ◽  
Major Step ◽  
Specific Patient ◽  
Children And Young People ◽  
Face To Face ◽  
Patient Reported

Abstract Background: Measuring the outcomes that matter to children and young people (CYP) with juvenile idiopathic arthritis (JIA), is a necessary precursor to patient-centred improvements in quality of clinical care. We present a two-centre validation of novel JIA patient-reported outcome and experience measures (PROM and PREM) developed as part of the CAPTURE-JIA project. Methods: CYP with JIA were recruited from paediatric rheumatology clinics, completing the CAPTURE-JIA PROM and PREM, CHAQ and CHU 9D. A subset participated in face-to-face interviews and completed the PROM/PREM one week later. The OMERACT filter was applied and the three domains of validation assessed. Truth assessments included cognitive interviewing, sensitivity analysis and Spearman’s correlations. Discrimination assessments included specificity and reliability testing. Feasibility was assessed using time to form completion and proportion of missing data. Results: Eighty-two CYP and their families were recruited; ten cognitive interviews and fifteen PROM/PREM test/retests were conducted. Truth: CYP and parents understood the PROM/PREM and felt important areas were covered. PROM criteria had high sensitivities (> 70%) against similar items on the CHU 9D, with the exception of fatigue (58%). Correlations between similar PROM and CHU 9D criteria were moderate to very strong (coefficients 0.40–0.82.) Discrimination: high specificities (> 70%) on corresponding PROM and CHU 9D domains. Feasibility: median completion times for PROM sixty seconds (IQR 38–75) and PREM forty-nine seconds (IQR 30–60) respectively. Conclusion: The CAPTURE-JIA PROM and PREM are valid and feasible in UK paediatric rheumatology clinics. Embedding routine collection into clinical care would be a major step towards improving quality of care.

scholarly journals Validation of novel patient-centred juvenile idiopathic arthritis-specific patient-reported outcome and experience measures (PROMs/PREMs)

2020 ◽  
Vol 18 (1) ◽  
Author(s):  
Laura E. Lunt ◽  
Stephanie Shoop-Worrall ◽  
Nicola Smith ◽  
Gavin Cleary ◽  
Janet McDonagh ◽  
...  
Keyword(s):  
Juvenile Idiopathic Arthritis ◽  
Clinical Care ◽  
Patient Reported Outcome ◽  
Paediatric Rheumatology ◽  
Major Step ◽  
Specific Patient ◽  
Children And Young People ◽  
Face To Face ◽  
Patient Reported

Abstract Background Measuring the outcomes that matter to children and young people (CYP) with juvenile idiopathic arthritis (JIA), is a necessary precursor to patient-centred improvements in quality of clinical care. We present a two-centre validation of novel JIA patient-reported outcome and experience measures (PROM and PREM) developed as part of the CAPTURE-JIA project. Methods CYP with JIA were recruited from paediatric rheumatology clinics, completing the CAPTURE-JIA PROM and PREM, CHAQ and CHU 9D. A subset participated in face-to-face interviews and completed the PROM/PREM 1 week later. The OMERACT filter was applied and the three domains of validation assessed. Truth assessments included cognitive interviewing, sensitivity analysis and Spearman’s correlations. Discrimination assessments included specificity and reliability testing. Feasibility was assessed using time to form completion and proportion of missing data. Results Eighty-two CYP and their families were recruited; ten cognitive interviews and fifteen PROM/PREM test/retests were conducted. Truth: CYP and parents understood the PROM/PREM and felt important areas were covered. PROM criteria had high sensitivities (> 70%) against similar items on the CHU 9D, with the exception of fatigue (58%). Correlations between similar PROM and CHU 9D criteria were moderate to very strong (coefficients 0.40–0.82.) Discrimination: high specificities (> 70%) on corresponding PROM and CHU 9D domains. Feasibility: median completion times for PROM 60 s (IQR 38–75) and PREM 49 s (IQR 30–60) respectively. Conclusion The CAPTURE-JIA PROM and PREM are valid and feasible in UK paediatric rheumatology clinics. Embedding routine collection into clinical care would be a major step towards improving quality of care.

scholarly journals Validation of novel patient-centred juvenile idiopathic arthritis-specific patient-reported outcome and experience measures (PROMs/PREMs)

2020 ◽  
Author(s):  
Laura E Lunt ◽  
Stephanie Shoop-Worrall ◽  
Nicola Smith ◽  
Gavin Cleary ◽  
Janet McDonagh ◽  
...  
Keyword(s):  
Juvenile Idiopathic Arthritis ◽  
Clinical Care ◽  
Patient Reported Outcome ◽  
Paediatric Rheumatology ◽  
Major Step ◽  
Specific Patient ◽  
Children And Young People ◽  
Face To Face ◽  
Patient Reported

Abstract Background: Measuring the outcomes that matter to children and young people (CYP) with juvenile idiopathic arthritis (JIA), is a necessary precursor to patient-centred improvements in quality of clinical care. We present a two-centre validation of novel JIA patient-reported outcome and experience measures (PROM and PREM) developed as part of the CAPTURE-JIA project. Methods: CYP with JIA were recruited from paediatric rheumatology clinics, completing the CAPTURE-JIA PROM and PREM, CHAQ and CHU 9D. A subset participated in face-to-face interviews and completed the PROM/PREM one week later. The OMERACT filter was applied and the three domains of validation assessed. Truth assessments included cognitive interviewing, sensitivity analysis and Spearman’s correlations. Discrimination assessments included specificity and reliability testing. Feasibility was assessed using time to form completion and proportion of missing data. Results: Eighty-two CYP and their families were recruited; ten cognitive interviews and fifteen PROM/PREM test/retests were conducted. Truth: CYP and parents understood the PROM/PREM and felt important areas were covered. PROM criteria had high sensitivities (>70%) against similar items on the CHU 9D, with the exception of fatigue (58%). Correlations between similar PROM and CHU 9D criteria were moderate to very strong (coefficients 0.40-0.82.) Discrimination: high specificities (>70%) on corresponding PROM and CHU 9D domains. Feasibility: median completion times for PROM sixty seconds (IQR 38-75) and PREM forty-nine seconds (IQR 30-60) respectively. Conclusion: The CAPTURE-JIA PROM and PREM are valid and feasible in UK paediatric rheumatology clinics. Embedding routine collection into clinical care would be a major step towards improving quality of care.

Screening for cancer-associated dysphagia: The development of two rapid tools for use in observational studies and routine care.

2018 ◽  
Vol 36 (4_suppl) ◽  
pp. 164-164
Author(s):  
Michael Borean ◽  
Kishan Shani ◽  
M. Catherine Brown ◽  
Judy Chen ◽  
Mindy Liang ◽  
...  
Keyword(s):  
Observational Studies ◽  
Clinical Care ◽  
Phase 1 ◽  
Rapid Screening ◽  
Phase 2 ◽  
Patient Acceptability ◽  
Symptom Monitoring ◽  
Thoracic Radiation ◽  
Patient Reported ◽  
Screening Question

164 Background: Dysphagia as a cancer symptom can be associated with significant morbidity. We developed dysphagia screener tools for use in observational studies (Phase 1) and routine symptom monitoring in clinical care (Phase 2). Methods: Various dysphagia or odynophagia screening questions, selected after an expert panel reviewed content, criterion, and construct validity, were compared to either FACT-E Swallowing Index Cut-Off Values (SICV) or to questions adapted from the Patient Reported Outcomes for Common Terminology Criteria for Adverse Events (PRO-CTCAE). Sensitivity, specificity and patient acceptability were assessed. Results: In developing a tool for observational studies (Phase 1; n = 178 esophageal cancer patients), the screening question, “How are you currently eating?” had the highest sensitivities and specificities against various SICV cut-offs, with the best optimal cut-off associated with the clinical outcome of weight loss (80% sensitivity, 75% specificity). When developing a rapid screening tool for routine symptom monitoring (Phase 2; 255 head and neck, gastro-esophageal, and patients undergoing thoracic radiation), a single question screener (“Do you experience any difficulty or pain upon swallowing?”) versus a PRO-CTCAE-like gold standard generated sensitivities between 86-94% and specificities between 93-100%. The screening question (+/- follow-up questions where indicated) had a median completion time of under 2 minutes, and > 90% of patients were happy to complete the survey on an electronic tablet, did not feel that survey completion made their clinic visit more difficult, and did not find the questions upsetting or distressful. Conclusions: Two screener tools (for prospective observational studies “How are you currently eating?”, and for routine clinical monitoring “Do you experience any difficulty or pain upon swallowing?”) can effectively screen dysphagia symptoms without increasing cancer outpatient clinic burden.

scholarly journals Study protocol for the validation of a new patient-reported outcome measure (PROM) of listening effort in cochlear implantation: the Listening Effort Questionnaire-Cochlear Implant (LEQ-CI)

BMJ Open ◽  
2019 ◽  
Vol 9 (7) ◽  
pp. e028881 ◽  
Author(s):  
Sarah E Hughes ◽  
Frances Rapport ◽  
Alan Watkins ◽  
Isabelle Boisvert ◽  
Catherine M McMahon ◽  
...  
Keyword(s):  
Cochlear Implant ◽  
Phase 1 ◽  
Well Being ◽  
Patient Reported Outcome ◽  
Test Theory ◽  
Measurement Properties ◽  
Listening Effort ◽  
Specific Patient ◽  
Patient Reported ◽  
Will Self

IntroductionListening effort may be defined as the cognitive resources needed to understand an auditory message. A sustained requirement for listening effort is known to have a negative impact on individuals’ sense of social connectedness, well-being and quality of life. A number of hearing-specific patient-reported outcome measures (PROMs) exist currently; however, none adequately assess listening effort as it is experienced in the listening situations of everyday life. The Listening Effort Questionnaire-Cochlear Implant (LEQ-CI) is a new, hearing-specific PROM designed to assess perceived listening effort as experienced by adult CI patients. It is the aim of this study to conduct the first psychometric evaluation of the LEQ-CI’s measurement properties.Methods and analysisThis study is a phased, prospective, multi-site validation study in a UK population of adults with severe-profound sensorineural hearing loss who meet local candidacy criteria for CI. In phase 1, 250 CI patients from four National Health Service CI centres will self-complete a paper version of the LEQ-CI. Factor analysis will establish unidimensionality and Rasch analysis will evaluate item fit, differential item functioning, response scale ordering, targeting of persons and items, and reliability. Classical test theory methods will assess acceptability/data completeness, scaling assumptions, targeting and internal consistency reliability. Phase 1 results will inform refinements to the LEQ-CI. In phase 2, a new sample of adult CI patients (n=100) will self-complete the refined LEQ-CI, the Speech, Spatial and Qualities of Hearing Scale, the Nijmegen Cochlear Implant Questionnaire and the Fatigue Assessment Scale to assess construct validity.Ethics and disseminationThis study was approved by the Abertawe Bro Morgannwg University Health Board/Swansea University Joint Study Review Committee and the Newcastle and North Tyneside 2 Research Ethics Committee, Ref: 18/NE/0320. Dissemination will be in high-quality journals, conference presentations and SEH’s doctoral dissertation.

mHealth Apps for Musculoskeletal Rehabilitation: State of the Practice Review (Preprint)

2021 ◽  
Author(s):  
Shíofra Ryan
Keyword(s):  
Digital Health ◽  
Clinical Care ◽  
Exercise Adherence ◽  
Self Management ◽  
Home Exercise ◽  
Cross Sectional ◽  
Specific Patient ◽  
Patient Reported ◽  
Mhealth Apps ◽  
Musculoskeletal Rehabilitation

BACKGROUND The number of mobile health (mHealth) apps released for musculoskeletal (MSK) injury treatment and self-management of home-exercise programmes (HEPs) has risen rapidly in recent years as digital health interventions are explored and researched in more detail. As this number grows, it is becoming increasingly difficult for users to navigate the market and select the most appropriate app for their use-case. It is also unclear as to what features developers of these apps are harnessing to support patient self-management, and how they fit into clinical care pathways. OBJECTIVE The objective of this study was to scope the current market of mHealth apps for MSK rehabilitation and to report on the app features, claims, evidence-base and functionalities. METHODS A cross-sectional study of apps for MSK rehabilitation was performed across both major app stores: iOS App Store and Google Play Store. Four search terms were used; physiotherapy rehabilitation, physical therapy rehabilitation, rehabilitation exercise and therapeutic exercise, to identify apps which were then cross-referenced against set selection criteria by four reviewers. Each reviewer, where possible, downloaded the app and accessed supplementary literature available on the product to assist in data extraction. RESULTS A total of 1322 apps were identified. After application of the inclusion/exclusion criteria and removal of duplicates, 144 apps were included in the study. Over half of the included apps (56.3%) had been released within the past three years. Three quarters (74.3%) of the apps made no reference to evidence supporting the design or efficacy of the app, with only 11.1% providing direct citations to research. The majority of apps did utilise exercise pictures (95.8%) or videos (67.4%), however comparatively few harnessed additional features to encourage engagement and support self-management such as an adherence log (45.8%), communication portal (22.2%), patient reported outcome capture (25%), or direct feedback (39.6%). Of note, and somewhat concern, many of these apps prescribed generic exercises (64.6%) in the absence of individualised input to the user, with few providing specific patient education (34%), and safety advice or disclaimers (26.4%). CONCLUSIONS The cohort of apps included in this study contained a large heterogeneity of features meaning it is difficult for users to identify the most appropriate or effective app. Many apps are missing the opportunity to offer key features which could promote exercise adherence and encourage self-management in musculoskeletal rehabilitation. Furthermore, very few developers currently offering products on the market are providing evidence to support the design and efficacy of their technologies.

scholarly journals Life Impact of Developmental Coordination Disorder: Qualitative Analysis of Patient and Therapist Experiences

2019 ◽  
Vol 12 (1) ◽  
pp. 491-494
Author(s):  
U. Ganapathy Sankar ◽  
R. Monisha
Keyword(s):  
Conceptual Framework ◽  
Health Professionals ◽  
Gold Standard ◽  
Daily Living ◽  
Assessment Tool ◽  
Developmental Coordination Disorder ◽  
Specific Patient ◽  
Patient Reported ◽  
Life Impact ◽  
Coordination Disorder

DCD are one of the more commonly occurring forms of Developmental disorder managed by therapists and their teams worldwide. The impacts of this disorder are not restricted to limitation in activity of daily living and participation in sports and academic activities with peer groups, but may also result in long term physical co morbidities, psychological, and social consequences. There is currently no gold standard assessment tool in the identification of DCD; however specific patient-reported outcome measures DCDQ remains in practice. This analysis aimed to develop a conceptual framework of life impacts of developmental coordination disorder from the experiences of caregivers and parents who have DCD Children as well as the health professionals who treat them. A qualitative investigation was done using semi-structured interviews with people (n=12) who had handling children with DCD (Caregivers/patients) and Therapists (n=6) who treat children with DCD. Interviews with caregivers were recorder and 1 therapist has been individually allotted for transcribing each phrase and codes them. The recorded and coded phrases were finally grouped in categories. Experience of health professionals ranged from 1 year to 15 years working with people with DCD. Health professionals included a pediatrician (1), physiotherapists (2), psychiatrist (1) and an occupational therapist (1). The conceptual framework derived from interview data included five themes (Physical, Occupational, Psychological, Daily Living, and Social). Therapist responses did not reveal any additional items, but majority of responses focus on physical and occupational therapy scope. The nature of life impact following DCD affects many areas of life. The findings from this research have provided an empirically derived conceptual framework from which a gold standard outcome measure can be designed for a geographic location.

Selecting a PRO-CTCAE based subset for patient reported symptom monitoring during lung cancer treatment (Preprint)

2020 ◽  
Author(s):  
Evalien Veldhuijzen ◽  
Iris Walraven ◽  
Jose Belderbos
Keyword(s):  
Lung Cancer ◽  
Clinical Practice ◽  
Cancer Patients ◽  
Treatment Modalities ◽  
European Organization ◽  
Specific Patient ◽  
Symptom Monitoring ◽  
Lung Cancer Patients ◽  
Wide Range ◽  
Patient Reported

BACKGROUND The Patient Reported Outcomes Version of the Common Terminology Criteria of Adverse Events (PRO-CTCAE) item library covers a wide range of symptoms relevant for oncology care. To enable implementation of PRO-CTCAE-based symptom monitoring in clinical practice, there is a need to select a subset of items relevant for specific patient populations. OBJECTIVE The aim of this study was to develop a PRO-CTCAE subset relevant for patients with lung cancer. METHODS The PRO-CTCAE-based subset for lung cancer patients was generated using a mixed methods approach based on the European Organization for Research and Treatment of Cancer (EORTC) guidelines for developing questionnaires, consisting of a literature review and semi-structured interviews with both lung cancer patients and health care practitioners (HCPs). Both patients and HCPs were queried on the relevance and impact of all PRO-CTCAE items. Results were summarized and, after a final round of expert review, a selection of clinically relevant items for lung cancer patients was made. RESULTS A heterogeneous group of lung cancer patients (n=25) from different treatment modalities and HCPs (n=22) participated in the study. A final list of eight relevant PRO-CTCAE items was created: decreased appetite, cough, shortness of breath, fatigue, constipation, nausea, sadness, and pain (general). CONCLUSIONS Based on literature and both professional and patient input, a subset of PRO-CTCAE items has been identified for use in lung cancer patients in clinical practice. Future work is needed to confirm the validity and effectiveness of this PRO-CTCAE lung cancer subset internationally, and in the real-world clinical practice setting.

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