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 European Multicentre Bronchiectasis Audit and Research Collaboration (EMBARC): experiences from a successful ERS Clinical Research Collaboration

Breathe ◽  
2017 ◽  
Vol 13 (3) ◽  
pp. 180-192 ◽  
Author(s):  
James D. Chalmers ◽  
Megan Crichton ◽  
Pieter C. Goeminne ◽  
Michael R. Loebinger ◽  
Charles Haworth ◽  
...  
Keyword(s):  
Clinical Trials ◽  
Clinical Research ◽  
Research Collaboration ◽  
Clinical Care ◽  
Research Priorities ◽  
Chronic Obstructive ◽  
List Type ◽  
European Respiratory Society ◽  
Obstructive Pulmonary Disease ◽  
Research Education

In contrast to airway diseases like chronic obstructive pulmonary disease or asthma, and rare diseases such as cystic fibrosis, there has been little research and few clinical trials in bronchiectasis. Guidelines are primarily based on expert opinion and treatment is challenging because of the heterogeneous nature of the disease.In an effort to address decades of underinvestment in bronchiectasis research, education and clinical care, the European Multicentre Bronchiectasis Audit and Research Collaboration (EMBARC) was established in 2012 as a collaborative pan-European network to bring together bronchiectasis researchers. The European Respiratory Society officially funded EMBARC in 2013 as a Clinical Research Collaboration, providing support and infrastructure to allow the project to grow.EMBARC has now established an international bronchiectasis registry that is active in more than 30 countries both within and outside Europe. Beyond the registry, the network participates in designing and facilitating clinical trials, has set international research priorities, promotes education and has participated in producing the first international bronchiectasis guidelines. This manuscript article the development, structure and achievements of EMBARC from 2012 to 2017.Educational aimsTo understand the role of Clinical Research Collaborations as the major way in which the European Respiratory Society can stimulate clinical research in different disease areasTo understand some of the key features of successful disease registriesTo review key epidemiological, clinical and translational studies of bronchiectasis contributed by the European Multicentre Bronchiectasis Audit and Research Collaboration (EMBARC) project in the past 5 yearsTo understand the key research priorities identified by EMBARC for the next 5 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.

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.

Improving Cancer Care Through the Patient Experience: How to Use Patient-Reported Outcomes in Clinical Practice

2017 ◽  
pp. 695-704 ◽  
Author(s):  
Kathi Mooney ◽  
Donna L. Berry ◽  
Meagan Whisenant ◽  
Daniel Sjoberg
Keyword(s):  
Patient Experience ◽  
Cancer Care ◽  
Patient Reported Outcomes ◽  
Clinical Care ◽  
Population Data ◽  
Population Level ◽  
Clinical Work ◽  
Aggregated Data ◽  
Individual Level ◽  
Patient Reported

Poorly controlled symptoms are common and debilitating during cancer treatment and can affect functional status and quality of life, health care resource utilization, treatment adherence, and cancer survivorship. Historically, the patient experience, including symptoms during treatment, has not been tracked or documented in the patient health record. Measurement of patient-reported outcomes (PROs), including symptoms, is an essential component to cancer care focused on the illness impact to the patient and family. PROs can be useful at the individual level for monitoring and promoting symptom care both in the clinic and remotely and at the population level for aggregating population data for use in research and quality improvement initiatives. Implementation of PROs in cancer clinical care requires a carefully thought out process to overcome challenges related to integrating PROs into existing electronic health records and clinical work flow. Issues with implementing PRO collection may include making decisions about measurement tools, modes of delivery, frequency of measurement, and interpretation that are guided by a clarification of the purpose for collecting PROs. We focus on three aspects of PRO use: (1) improving care for individual patients, (2) analyzing aggregated data to improve care and outcomes overall, and (3) considerations in implementing PRO collection.

scholarly journals Clinical Cancer Advances 2020: Annual Report on Progress Against Cancer From the American Society of Clinical Oncology

2020 ◽  
Vol 38 (10) ◽  
pp. 1081 ◽  
Author(s):  
Merry Jennifer Markham ◽  
Kerri Wachter ◽  
Neeraj Agarwal ◽  
Monica M. Bertagnolli ◽  
Susan Marina Chang ◽  
...  
Keyword(s):  
Surgical Treatment ◽  
Clinical Research ◽  
Cancer Treatment ◽  
Annual Report ◽  
Research Priorities ◽  
The Past ◽  
Clinical Cancer ◽  
Number Of Patients ◽  
Systemic Therapies

Each year Clinical Cancer Advances: ASCO’s Annual Report on Progress Against Cancer highlights the most important clinical research advances of the past year, including the Advance of the Year, and identifies priority areas where ASCO believes research efforts should be focused moving forward. In 2020, ASCO names the Refinement of Surgical Treatment of Cancer as the Advance of the Year. Years of progress in developing new systemic cancer therapies has not only improved patient survival and quality of life but is now transforming surgical approaches to cancer treatment. The emergence of novel systemic therapies combined in new and better ways is significantly changing the role of cancer surgery. ASCO’s selection of Refinement of Surgical Treatment of Cancer as the 2020 Advance of the Year recognizes recent strides seen in the effectiveness of these treatments in reducing the amount of surgery, and even the need for it, while increasing the number of patients who can undergo surgery when needed. Other advances highlighted in the report include progress in cancer prevention, molecular diagnostics, and cancer treatment—surgery, radiotherapy, combination therapy, immunotherapy, and other types of therapies. The report also features ASCO's 2020 list of Research Priorities to Accelerate Progress Against Cancer. These priorities represent promising areas of research that have the potential to significantly improve the knowledge base for clinical decision-making and address vital unmet needs in cancer care. A MESSAGE FROM ASCO’S PRESIDENT Shortly before I was elected President of ASCO, I attended the 65th birthday party of a current patient. She had been diagnosed 10 years earlier with metastatic breast cancer and hadn’t been sure she wanted to move forward with further treatment. With encouragement, she elected to participate in a clinical trial of an investigational drug that is now widely used to treat breast cancer. Happily, here we were, celebrating with her now-married daughters, their husbands, and three beautiful grandchildren, ages 2, 4, and 8. Such is the importance of clinical trials and promising new therapies. Clinical research is about saving and improving the lives of individuals with cancer. It’s a continuing story that builds on the efforts of untold numbers of researchers, clinicians, caregivers, and patients. ASCO’s Clinical Cancer Advances report tells part of this story, sharing the most transformative research of the past year. The report also includes our latest thinking on the most urgent research priorities in oncology. ASCO’s 2020 Advance of the Year—Refinement of Surgical Treatment of Cancer—highlights how progress drives more progress. Surgery has played a fundamental role in cancer treatment. It was the only treatment available for many cancers until the advent of radiation and chemotherapy. The explosion in systemic therapies since then has resulted in significant changes to when and how surgery is performed to treat cancer. In this report, we explore how treatment successes have led to less invasive approaches for advanced melanoma, reduced the need for surgery in renal cell carcinoma, and increased the number of patients with pancreatic cancer who can undergo surgery. Many research advances are made possible by federal funding. With the number of new US cancer cases set to rise by roughly a third over the next decade, continued investment in research at the national level is crucial to continuing critical progress in the prevention, screening, diagnosis, and treatment of cancer. While clinical research has translated to longer survival and better quality of life for many patients with cancer, we can’t rest on our laurels. With ASCO’s Research Priorities to Accelerate Progress Against Cancer, introduced last year and updated this year, we’ve identified the critical gaps in cancer prevention and care that we believe to be most pressing. These priorities are intended to guide the direction of research and speed progress. Of course, the effectiveness or number of new treatments is meaningless if patients don’t have access to them. High-quality cancer care, including clinical trials, is out of reach for too many patients. Creating an infrastructure to support patients is a critical part of the equation, as is creating connections between clinical practices and research programs. We have much work to do before everyone with cancer has equal access to the best treatments and the opportunity to participate in research. I know that ASCO and the cancer community are up for this challenge. Sincerely, Howard A. “Skip” Burris III, MD, FACP, FASCO ASCO President, 2019-2020

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.

A person-centered e-proms multi-faceted intervention to improve patient experience and health outcomes: A multi-site implementation study in diverse ambulatory oncology practices.

2017 ◽  
Vol 35 (8_suppl) ◽  
pp. 182-182 ◽  
Author(s):  
Doris Howell ◽  
Madeline Li ◽  
Zeev Rosberger ◽  
Nicole Montgomery ◽  
Carole Mayer ◽  
...  
Keyword(s):  
Health Outcomes ◽  
Patient Experience ◽  
Clinical Care ◽  
Emergency Department Visits ◽  
Practice Change ◽  
Assessment System ◽  
Team Collaboration ◽  
Symptom Screening ◽  
Ambulatory Oncology ◽  
Patient Reported

182 Background: The Improving Patient Experience and Health Outcomes Collaborative (iPEHOC) aims to improve health outcomes through uptake of electronic patient reported outcome measures (e-PROMs) in oncology practices in Ontario and Quebec. Building on screening with the Edmonton Symptom Assessment System (ESAS), e-PROMs were triggered based on cut scores to focus multidimensional assessment and management of pain (BPI), fatigue (CFS), anxiety (GAD-7) and depression (PHQ-9). Methods: Multifaceted implementation strategies and practice change coaching facilitated the use of e-PROMs to improve symptom outcomes. A mixed-method, pre-post quasi-experimental design assessed process and impact of the intervention on symptom screening rates, symptom burden, patient experience and activation, clinician satisfaction, team collaboration and health care use. Mann-Whitney U statistics examined significance of change from baseline to the 8-month post comparison. Qualitative data explored uptake of e-PROMs in practice. Results: Over the implementation period 10,248 ESAS screens were completed in iPEHOC clinics; 17.5% triggered an additional e-PROM. A slight improvement was noted in person-centeredness of communication (mean change of 1.43 to 1.37; four-point scale of 1 = very satisfied, 4 = very dissatisfied) and in team collaboration. A significant increase in patient activation levels (p = 0.045) was related to decreased emergency department visits (2% pre/post change, p = 0.81) and hospitalization within 30 days of an e-PROMs completion (2.2% change, p = 0.034) in Ontario. Patients and clinicians perceived e-PROMs as valuable to focus communication in the clinic visit and for shared treatment planning. Focus group data suggests that patients use e-PROMs as a ‘self-check-in’, to communicate their symptoms and normalize disclosure of depression in clinical care. Conclusions: Uptake of e-PROMs in diverse settings is complex and demanding. Improving symptom management quality requires PROM data to be fed-back for ‘real-time’ use in the clinical encounter and practice change facilitation for meaningful use in routine 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.

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