Patient-reported Feedback Research Articles

Acceptability of Audiovestibular Assessment in the Home-A Patient Survey.

The COVID-19 pandemic dramatically changed health service delivery with vulnerable patients advised to isolate and appointments provided virtually. This change affected recruitment into an observational cohort study, undertaken at a single site, where participants with mitochondrial disorders were due to have specialist hospital-based audiovestibular tests. To ensure study viability, the study protocol was amended to allow home-based assessment for vulnerable participants. Here, we report outcomes of an online survey of participants who underwent home-based assessment, related to the experience, perceived benefits, and drawbacks of home audiovestibular assessments. Seventeen participants underwent home-based neuro-otological assessment, due to the need to isolate during COVID-19. Following the assessment, 16 out of 17 participants completed an anonymised online survey to share their experiences of the specialist home-based assessment. One hundred percent of participants rated the home-based assessment 'very positively' and would recommend it to others. Sixty-three percent rated it better than attending hospital outpatient testing settings. The benefits included no travel burden (27%) and reduced stress (13%). A majority reported no drawbacks in having the home visit. The patient-reported feedback suggests a person-centred approach where audiovestibular assessments are conducted in their homes is feasible for patients, acceptable and seen as beneficial to a vulnerable group of patients.

Feasibility of home dose optimization of apomorphine sublingual film in Parkinson's disease patients with OFF episodes: results from the dose-optimization phase of an open-label, randomized crossover study.

Dose optimization of sublingual apomorphine (SL-APO), a dopamine agonist for the treatment of OFF episodes in patients with Parkinson's disease (PD), has been performed under clinical supervision in clinical trials. SL-APO may be a candidate for home dosing optimization which would be less burdensome for patients. To evaluate the feasibility and safety of home optimization of SL-APO in patients with PD and OFF episodes. A multicenter, randomized, crossover study comparing SL-APO with subcutaneous apomorphine was conducted, comprising an open-label dose-optimization phase and a treatment phase. This non-comparative analysis focuses on the outcomes of the dose-optimization phase with SL-APO only. Patients with PD and OFF episodes received SL-APO at an initial dose of 10 mg in the clinic (open-label). Further optimization could continue at home in 5 mg increments during subsequent OFF episodes (maximum dose of 30 mg). Optimization and tolerability were assessed daily by patient-reported feedback via telephone. Patients reporting a FULL ON returned to the clinic for a dose-confirmation visit (DCV). In patients with inadequate response as determined during the DCV, the dose could be further optimized at home. Home optimization was continued by 81.4% (83/102) of patients. Of these, 80.7% identified an effective, tolerable dose. Mean time between initial clinic visit and DCV 1 was 6.8 days, and the final optimized dose of SL-APO was 30 mg (mode). In total, 62.7% of patients reported ⩾1 adverse event; the most common included nausea (31.4%), dizziness (9.8%), somnolence (8.8%), dyskinesia (7.8%), and fatigue (5.9%). The safety profile in this study in which most patients performed home dose optimization was consistent with the study utilizing clinic-based optimization. After the first clinic dose, home dose optimization of SL-APO appears feasible in patients with PD and OFF episodes, with most patients identifying their optimal SL-APO dose at home. This study is registered with EudraCT (2016-003456-7): Clinical Trials register - Search for eudract_number:2016-003456-70.

Embedding electronic patient-reported outcome measures into routine care for patients with stage III MELanoma (ePROMs-MEL): protocol for a prospective, longitudinal, mixed-methods pilot study

IntroductionThe benefits of patient-reported feedback, using questionnaires that allow patients to report how they feel and function without any interpretation from healthcare professionals, are well established. However, patient-reported outcomes measures...

Patient feedback and evaluation measures of a physical activity initiative: Exercise is Medicine program.

Nearly half of American adults fail to meet national guidelines for physical activity (PA). As a major contributor to the development of preventable chronic diseases, insufficient PA is an important target for health behaviour interventions. Exercise is Medicine (EIM) aims to increase PA levels among primary care patients through routine PA evaluation, prescription, brief counselling, and referral to community resources. PA is treated as a vital sign with the goal of increasing PA levels in prescribed manageable doses. EIM is currently being implemented in UC San Diego Health System's primary care clinics. (i) To collect and summarize patient perceptions of EIM and its components. (ii) To identify discrepancies between patient-reported feedback and primary care provider (PCP) documentation in corresponding visit notes in the electronic medical record (EMR). Patient recall of EIM components was measured using a 10-item survey distributed via MyChart. PCP documentation of EIM was tracked in the EMR system. Patient feedback (n = 316) about EIM components was positive and reinforced patients' confidence in their ability to increase PA. Approximately 70% of patients reported having a PA discussion with their PCP at their most recent visit, but only approximately 21% of these discussions were documented by PCPs using the preprogrammed smartphrase in the EMR. Overall, patients reported positive perceptions of EIM. While patient perceptions of EIM suggested that PA discussions with PCPs are happening during the majority of visits, PCP documentation fell behind. Documentation via smartphrase may need to be modified for physicians to use.

Feasibility and Acceptability of Electronic Patient-Reported Outcome Measures (e-PROMs) Collection and Feedback in Hemodialysis Patients

Feasibility and Acceptability of Electronic Patient-Reported Outcome Measures (e-PROMs) Collection and Feedback in Hemodialysis Patients

Understanding routine outcome monitoring and clinical feedback in context: Introduction to the special section

The practice of routine outcome monitoring and providing clinical feedback has been widely studied within psychotherapy. Nevertheless, there are many outstanding questions regarding this practice. Is it an evidence-based adjunct to ongoing psychotherapies, or an ineffective complication of treatment? If it is effective, through what mechanism(s) does it act? Is it effective with all patient populations, treatment types, and service delivery mechanisms, or does its impact vary across context? What choices in the implementation process affect the utility of patient-reported data feedback on psychotherapy outcomes? The studies in this special section explore these questions using a wide variety of methods and significantly expand the reach of studies on feedback. Together, these studies represent a snapshot of a maturing field of study: Initial discoveries are developed into more robust theories and applied in a wider range of contexts, while the limits of that theory are tested. They also signal directions for future clinical and research work that may improve patient care in psychosocial interventions into the future.

A pilot denture service collaboration between Den-Tech denture charity and Crisis at Christmas Dental Service (CCDS): A Plan-Do-Study-Act analysis.

Introduction The Crisis at Christmas Dental Service (CCDS) provides dental treatment for homeless and vulnerably housed people each year during the Christmas period. In 2017, Den-Tech piloted a same-day field-laboratory denture service alongside CCDS to provide new dentures, additions and repairs for people experiencing social exclusion who have limited access to dental care.Objectives To evaluate the service in terms of: (i) treatment need for denture service; (ii) patient-reported feedback; (iii) clinician-reported feedback; and (iv) learning outcomes from the pilot denture service.Methods Clinicians recorded their dental activity on a standard pro forma and records of the dentures were maintained by the Den-Tech volunteer laboratory technicians. Patient feedback was collected on standardised feedback forms at the dental reception and volunteer feedback was collected via an online survey. The team undertook a quality improvement evaluation using the Plan-Do-Study-Act methodology.Results During the seven-day treatment period in 2017, 24 dentures were produced by the Den-Tech technicians, and in 2018, 31 dentures were created for people experiencing homelessness. In 2017, feedback was collected from 353 patients who attended the service: 99.4% were satisfied with their treatment and 98.3% would have recommended the service to others. Similarly, high levels of positive feedback were received in 2018. Of the dental volunteers who responded, 97.8% of volunteers felt that the denture service benefitted the patients.Conclusions The Den-Tech denture service was well-received by patients and volunteers alike. For the first time at Crisis at Christmas, patients were able to have dental extractions and immediate replacement of these teeth without compromising their dignity and overall appearance.Learning outcomes A quality improvement project utilising real-time volunteer and patient feedback can be a useful tool in reflecting upon the challenges and successes of a service as well as supporting its continual development.

Patient-reported outcomes feedback report for knee arthroplasty patients should present selective information in a simple design - findings of a qualitative study

BackgroundTechnical innovation to assess patient-reported outcomes (PROs) facilitates their implementation in clinical practice. In particular, mobile applications (apps) allow PROs to be assessed outside of the clinical setting. A patient’s health status can be remotely monitored and evaluated after discharge, and their recovery process tracked. This is of particular interest for patients after knee arthroplasty, as the recovery phase after surgery usually takes place in an outpatient setting and requires a high level of patient engagement. Providing results of PRO assessments to patients in the form of a feedback report could increase patient engagement and may improve communication between health care professionals and patients. The aim of the study is to develop a PRO feedback report for mobile devices that is comprehensible and provides valuable information for patients after knee arthroplasty.ResultsIn an iterative development process, our expert group developed two preliminary feedback reports (a text-based version and a graphical display) based on previous research results and practical experience. In a second step, we discussed these reports with orthopedic patients (n = 8) in terms of comprehensibility and value using semi-structured interviews and cognitive debriefing methods. Participants assessed the reports as informative, but had some difficulties in fully comprehending all of the information provided. Based on the feedback from patients, we modified both versions and reduced complexity to increase comprehensibility.ConclusionsA PRO feedback report for patients for mobile app use has to take account of the heterogeneous user group, particularly demographics such as age and experience with mobile devices. Information should be presented in a simple way to be comprehensible and of value to patients. Technological advancements allow a simple default report to be set, something which enables patients interested in additional information to make customizations.

Tools to facilitate communication during physician-patient consultations in cancer care: An overview of systematic reviews.

Tools have been developed to facilitate communication and support information exchange between people diagnosed with cancer and their physicians. Patient-reported outcome measures, question prompt lists, patient-held records, tape recordings of consultations, decision aids, and survivorship care plans have all been promoted as potential tools, and there is extensive literature exploring their impact on patient outcomes. Eleven systematic reviews of studies evaluating tools to facilitate patient-physician communication were reviewed and summarized in this overview of systematic reviews. Across the systematic reviews, 87 publications reported on 84 primary studies involving 15,381 participants. Routine use of patient-reported outcome measures and feedback of results to clinicians can improve pain management, physician-patient communication, and symptom detection and control; increase utilization of supportive care; and increase patient involvement in care. Question prompt lists can increase the number of questions asked by patients without increasing consultation length and may encourage them to reflect and plan questions before the consultation. There is limited benefit in audio recording consultations or using patient-held records during consultations. Physicians should be supported by adequately resourced health services to respond effectively to the range of clinical and broader patient needs identified through the routine use of tools to facilitate communication.

Patient Experiences with Cardiac Surgery in Alberta, Canada: Results from a Validated Survey

IntroductionResearch shows that a better patient experience may be associated with better outcomes. Most investigations, however, have only examined patients’ overall rating of care, which does not identify individual aspects of care which may be improved. Additionally, little is known about the experience of specific clinical groups in acute care.
 Objectives and ApproachThe study objective was to examine the experience of patients undergoing cardiac surgery across Alberta. Surveys were completed within 6 weeks of hospital discharge, and linked with inpatient administrative records. Study eligibility was determined using Canadian Classification of Intervention (CCI) procedure codes, to include patients who underwent coronary artery bypass graft (CABG), valve replacement, and/or percutaneous coronary intervention (angioplasty). The survey contained 56 questions and assessed multiple aspects of care. Results for each question were classified as percentage in “top box”, where “top box” represented the best possible result (e.g. nurses “always” explaining things in a way patients could understand).
 ResultsFrom April 2014 to March 2017, 1,921 patients completed a survey following cardiac surgery. This included 1,117 angioplasty only (58.2%), 409 CABG only (21.3%), 308 valve replacements (16.0%) and 87 (4.5%) who underwent multiple procedures. Patients were predominantly male (74.2%), over 50 years of age (88.6%) and admitted to hospital urgently (72.7%). The top three performing questions were nurses treating patients with courtesy and respect (91.4% reporting “always”), receiving written information about symptoms to watch out for after leaving hospital (90.9% “yes”), and discussion with hospital staff about help needed once leaving hospital (90.2% “yes”). The three poorest performing questions were hospital room quietness at night (48.6% “always”), staff describing possible side effects of new medications (51.4% “always”), and hospital room/bathroom cleanliness (64.9% “always”).
 Conclusion/ImplicationsOur results provide patient-reported feedback about the perceived strengths and areas for improvement associated with cardiac surgery in Alberta. By linking completed surveys with administrative data, we are able to examine the experience of specific clinical groups, while eliminating additional survey burden for patients.

Improving the Usefulness and Use of Patient Survey Programs: National Health Service Interview Study.

BackgroundA growing body of evidence suggests a concerning lag between collection of patient experience data and its application in service improvement. This study aims to identify what health care staff perceive to be the barriers and facilitators to using patient-reported feedback and showcase successful examples of doing so.ObjectiveThis study aimed to apply a systems perspective to suggest policy improvements that could support efforts to use data on the frontlines.MethodsQualitative interviews were conducted in eight National Health Service provider locations in the United Kingdom, which were selected based on National Inpatient Survey scores. Eighteen patient-experience leads were interviewed about using patient-reported feedback with relevant staff. Interviews were transcribed and underwent thematic analysis. Staff-identified barriers and facilitators to using patient experience feedback were obtained.ResultsThe most frequently cited barriers to using patient reported feedback pertained to interpreting results, understanding survey methodology, presentation of data in both national Care Quality Commission and contractor reports, inability to link data to other sources, and organizational structure. In terms of a wish list for improved practice, staff desired more intuitive survey methodologies, the ability to link patient experience data to other sources, and more examples of best practice in patient experience improvement. Three organizations also provided examples of how they successfully used feedback to improve care.ConclusionsStaff feedback provides a roadmap for policy makers to reconsider how data is collected and whether or not the national regulations on surveys and patient experience data are meeting the quality improvement needs of local organizations.

Lymphoma InterVEntion (LIVE) \u2013 patient-reported outcome feedback and a web-based self-management intervention for patients with lymphoma: study protocol for a randomised controlled trial

BackgroundPatients with lymphoma are at risk of experiencing adverse physical and psychosocial problems from their cancer and its treatment. Regular screening of these symptoms by the use of patient-reported outcomes (PROs) could increase timely recognition and adequate symptom management. Moreover, self-management interventions intend to enhance knowledge and skills and empower patients to better manage their disease and related problems. The objective of the Lymphoma InterVEntion (LIVE) trial is to examine whether feedback to patients on their PROs and access to a web-based, self-management intervention named Living with lymphoma will increase self-management skills and satisfaction with information, and reduce psychological distress.Methods/designThe LIVE randomised controlled trial consists of three arms: (1) standard care, (2) PRO feedback, and (3) PRO feedback and the Living with lymphoma intervention. Patients who have been diagnosed with Hodgkin lymphoma, non-Hodgkin lymphoma, including chronic lymphocytic leukaemia, as registered in the Netherlands Cancer Registry in various hospitals will be selected for participation. Patients are invited via their haemato-oncologist 6 to 15 months after diagnosis. The PRO feedback includes a graphical overview of patients’ own symptom and functioning scores and an option to compare their scores with those of other patients with lymphoma and a normative population of the same age and sex. The Living with lymphoma intervention is based on cognitive behavioural therapy components and includes information, assignments, assessments, and videos. Changes in outcomes from baseline to 16 weeks, 12, and 24 months post intervention will be measured. Primary outcomes are self-management skills, satisfaction with information, and psychological distress. Secondary outcomes are health-related quality of life, illness perceptions, fatigue, and health care use.Discussion/designThe results of the LIVE trial will provide novel insights into whether access to PRO feedback and the Living with lymphoma intervention will be effective in increasing self-management skills and satisfaction with information, and reducing distress. The LIVE trial is embedded in a population-based registry, which provides a unique setting to ascertain information on response, uptake, and characteristics of patients with lymphoma in web-based intervention(s). When effective, PRO feedback and Living with lymphoma could serve as easily and widely accessible interventions for coping with lymphoma.Trial registrationNetherlands Trial Register, identifier NTR5953. Registered on 14 July 2016.

A qualitative study of emergency physicians’ perspectives on PROMS in the emergency department

IntroductionThere is a growing emphasis on including patients' perspectives on outcomes as a measure of quality care. To date, this has been challenging in the emergency department (ED) setting. To...

Can we use patient-reported feedback to drive change? The challenges of using patient-reported feedback and how they might be addressed

The resolve to put patients at the heart of the National Health Service (NHS) has been ubiquitous in the aftermath of the Francis Report, and the policy agenda is beginning...

Web-based Comparative Patient-reported Outcome Feedback to Support Quality Improvement and Comparative Effectiveness Research in Total Joint Replacement.

Introduction:Patient-reported outcomes (PROs) are rarely included in quality monitoring systems, surgeon comparative feedback reports, or registries. We present the design and implementation of a secure website in a federally funded research program—Function and Outcomes Research for Comparative Effectiveness in Total Joint Replacement (FORCE-TJR)—to return comparative PRO reports to participating surgeons, in addition to including traditional quality measures, in order to monitor and improve quality and health outcomes.Methods:The surgeon-specific comparative PRO reports were designed and structured based on user input for content, data elements, integration, and display. Three questions are addressed regarding the knee and hip joint symptom profiles of patients before TJR, as well as outcomes of surgery. The website is organized with a hierarchical structure to display data at national, practice, and individual surgeon levels, and provides a comprehensive site-level executive summary and surgeon-level data reports that can be downloaded.Early Results:As of September 2014, over 22,000 patients were enrolled from more than 130 surgeons in 22 states. The reporting website was launched in September 2012 and has been updated quarterly for all surgeons to review their site- and individual-specific outcomes data compared to national benchmarks.Discussion:In this novel system, quarterly comparative surgeon feedback extends beyond traditional measures of complication rates to include PROs of pain relief and functional gain. We anticipate that this enhanced data will facilitate patient-centered quality improvement (QI) and outcomes research from the registry. As the Centers for Medicare & Medicaid Services (CMS) and other insurers consider future implementation of PROs, surgeons will increasingly need comparative data by which to self-monitor their practice outcomes.

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Improving the Care of Children With Advanced Cancer by Using an Electronic Patient-Reported Feedback Intervention: Results From the PediQUEST Randomized Controlled Trial

This study aimed to determine whether feeding back patient-reported outcomes (PROs) to providers and families of children with advanced cancer improves symptom distress and health-related quality of life (HRQoL). This study was a parallel, multicentered pilot randomized controlled trial. At most once per week, children age ≥ 2 years old with advanced cancer or their parent completed the computer-based Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) survey consisting of age- and respondent-adapted versions of the Memorial Symptom Assessment Scale (MSAS), Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQL4.0), and an overall Sickness question. In the intervention group (n = 51), oncologists and families received printed reports summarizing PROs; e-mails were sent to oncologists and subspecialists when predetermined scores were exceeded. No feedback was provided in the control group (n = 53). Primary outcomes included linear trends of MSAS, PedsQL4.0 total and subscale scores, and Sickness scores during 20 weeks of follow-up, along with child, parent, and provider satisfaction with PediQUEST feedback. Feedback did not significantly affect average MSAS, PedsQL4.0, or Sickness score trends. Post hoc subgroup analyses among children age ≥ 8 years who survived 20 weeks showed that feedback improved PedsQL4.0 emotional (+8.1; 95% CI, 1.8 to 14.4) and Sickness (-8.2; 95% CI, -14.2 to -2.2) scores. PediQUEST reports were valued by children, parents, and providers and contributed at least sometimes to physician initiation of a psychosocial consult (56%). Although routine feedback of PROs did not significantly affect the child's symptoms or HRQoL, changes were in expected directions and improvements observed in emotional HRQoL through exploratory analyses were encouraging. Importantly, children, parents, and providers value PRO feedback.

Patient-reported feedback promotes delivery of smoking cessation advice by dental professionals

The objective is to explore the effectiveness of providing patient-reported feedback to stimulate dental professionals to adhere to guidelines for the treatment of tobacco addiction. We use three independent patient samples with intervals of 6 and 18 months. The study concerns twenty-three primary care general dental practices in the Netherlands. We use descriptive analyses and χ2 tests were carried out on data from patient questionnaires administered at baseline and again 6 and 18 months later. Exploratory analyses were carried out on data from 425, 267 and 330 smoking patients to reveal factors influencing professional actions. Practices received a smoking cessation protocol intended to guide daily dental practice and facilitate discussion. On three occasions, patient perceptions of the smoking cessation education, advice and support were reported to the practices. Patient perceptions were assessed via administration of a short questionnaire to all smoking patients visiting the practice during 1 week (i.e. baseline) and all smoking patients visiting the practice during 1 week 6 and 18 months later. We measured changes in patient-reported receipt of smoking cessation advice and support from dental professionals. Results are presented in the form of the provision of advice, support and patient education increased after 6 and 18 months. Motivational stage of the patients (i.e. contemplation and preparation), daily smoker status of patient and fewer assistants in the dental practice contributed to these changes. Feedback from patients stimulated dental professionals to adhere to national guidelines for tobacco addiction treatment. Nevertheless, no receipt of smoking cessation advice or support was still reported for about 50% of practice visits. Investigation of more long-term feedback is, therefore, recommended to gain insight into the sustainability of the observed changes and explore possibilities for raising levels of guideline adherence.

Effect of communicating depression severity on physician prescribing patterns: findings from the Clinical Outcomes in MEasurement-based Treatment (COMET) trial

ObjectiveIn this secondary analysis from the Clinical Outcomes in MEasurement-based Treatment trial (COMET), we evaluated whether providing primary care physicians with patient-reported feedback regarding depression severity affected pharmacological treatment patterns. MethodIntervention-arm physicians received their patients' 9-item Patient Health Questionnaire scores monthly. Odds of having no change in antidepressant treatment during the 6-month study period were calculated. Relationships between depression symptom status (partial or nonresponse) at month 3 and treatment changes in months 3 through 6 were assessed. ResultsAmong 503 intervention and 412 usual care (UC) patients with major depressive disorder, most received antidepressant monotherapy at baseline (79.4% UC vs. 88.4% intervention; P=.047). Few switched their baseline antidepressant (17.4%), increased their dose (12.4%) or augmented with a second medication (2%). Odds of having no change in antidepressant therapy did not differ significantly between study arms (odds ratio 1.21; 95% confidence interval 0.78–1.88; P=.392). Few month 3 partial or nonresponders had a regimen change over the following 3 months; the study arms did not differ significantly (partial responders: 4.1% UC vs. 7.7% intervention; P=.429; nonresponders: 14.6% UC vs. 15.9% intervention; P=.888). ConclusionsAmong depressed patients treated in primary care, little active management was observed. The lack of treatment modification for the majority of partial and nonresponders was notable.