Incorporation Of Patient-reported Outcome Measures Research Articles

Editor's Spotlight/Take 5: The Price-Quality Mismatch: Are Negotiated Prices for Total Joint Arthroplasty Associated With Hospital Quality in a Large California Health System?

Editor's Spotlight/Take 5: The Price-Quality Mismatch: Are Negotiated Prices for Total Joint Arthroplasty Associated With Hospital Quality in a Large California Health System?

Patient-Reported Outcome Measures in Physiotherapy: An Overview

High-quality patient-centered health care involves incorporating patient choice in the treatment plan. Patient engagement corresponds with the quality of life (QoL) and satisfaction, which can be achieved by including patient-reported outcome measures (PROMs) in physiotherapy practice. PROMs are instruments to evaluate health outcomes from the perspective of the patient and to determine whether the management plan enhances their QoL. PROMs in regular practice offer a structured way for clinicians to track patient symptoms, determine clinical outcomes, and facilitate collaborative decision-making. During the patient assessment, it aids in establishing a consistent framework, confirming the clinical results, and ascertaining the validity of the evaluation to the desired treatment. PROM data can be collected in several ways, including in-person interviews, questionnaires, and diaries. The use of PROMs in research increases both the research process as well as the validity of its findings. Integrating PROMs into physiotherapy management is an opportunity to rightly understand the patient’s QoL trajectory and broaden the range of PROMs estimated in shared decision-making. Although PROM administration by clinicians helps for tracking patients, for guiding treatment considerations, and for providing a more central viewpoint for patients, its usage remains unclear by including patients in shared decision-making. However, establishing a patient-centered, comprehensive prototype of treatment requires the regular application of authorized PROMs. Incorporation of PROMs in physiotherapy practice can facilitate a multidimensional and patient-centered evaluation of the disease, identify unfulfilled needs, direct physiotherapist attention to these needs, and better inform policymakers in the light of identifying patient goals.

Psychosocial symptoms of ventricular arrhythmias: Integrating patient-reported outcomes into clinical care.

Patient-reported outcome measures (PROMs) are a valuable metric for assessing the quality of life and overall well-being in patients with ventricular arrhythmias (VAs) and/or implantable cardioverter-defibrillators (ICDs). The incorporation of PROMs into the workflow of a VA clinic not only allows for more patient-centered care but also may improve detection and treatment of clinically relevant anxiety or depression symptoms. Awareness of the factors known to correlate with adverse PROM scores may guide PROM administration and subsequent referral to mental health services. Further, change or stability in PROM scores can be used as a gauge to guide the effectiveness of cardiac and psychological treatment in certain populations that are the focus of this manuscript: patients with ICDs (with and without shocks), cardiac arrest survivors, and those with inherited arrhythmia syndromes.

Use of PROM during follow-up of patients with ovarian cancer: the PROMova study protocol

BackgroundThere is a paucity of high-level evidence on the optimal follow-up of patients with ovarian cancer after primary treatment. A debate is ongoing on the extent to which follow-up should...

Patient-Reported Outcome Measures in Cystic Fibrosis: Protocol for a Systematic Review.

BackgroundPatients 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.ObjectivePrior 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.MethodsThis 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.ResultsAs 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.ConclusionsThis review will identify any PROM(s) that may be used to measure HRQOL in the ACFDR.Trial RegistrationPROSPERO International Prospective Register of Systematic Reviews CRD42019126931; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=126931

Routinely measuring symptom burden and health-related quality of life in dialysis patients: first results from the Dutch registry of patient-reported outcome measures.

BackgroundThe use of patient-reported outcome measures (PROMs) is becoming increasingly important in healthcare. However, incorporation of PROMs into routine nephrological care is challenging. This study describes the first experience with PROMs in Dutch routine dialysis care. MethodsA pilot study was conducted in dialysis patients in 16 centres. Patients were invited to complete PROMs at baseline and 3 and 6 months. PROMs consisted of the 12-item short-form and Dialysis Symptom Index to assess health-related quality of life (HRQoL) and symptom burden. Response rates, HRQoL and symptom burden scores were analysed. Qualitative research methods were used to gain insight into patients’ views on using PROMs in clinical practice.ResultsIn total, 512 patients (36%) completed 908 PROMs (24%) across three time points. Response rates varied from 6 to 70% among centres. Mean scores for physical and mental HRQoL were 35.6 [standard deviation (SD) 10.2] and 47.7 (SD 10.6), respectively. Patients experienced on average 10.8 (SD 6.1) symptoms with a symptom burden score of 30.7 (SD 22.0). Only 1–3% of the variation in PROM scores can be explained by differences between centres. Patients perceived discussing their HRQoL and symptom scores as insightful and valuable. Individual feedback on results was considered crucial.ConclusionsThe first results show low average response rates with high variability among centres. Dialysis patients experienced a high symptom burden and poor HRQoL. Using PROMs at the individual patient level is suitable and may improve patient–professional communication and shared decision making. Further research is needed to investigate how the collection and the use of PROMs can be successfully integrated into routine care to improve healthcare quality and outcomes.

Evidence‐Based Medicine in Otolaryngology, Part 6: Patient‐Reported Outcomes in Clinical Practice

The assessment of patient-reported outcome measures (PROMs) in the outpatient setting is gaining momentum in clinical and research venues. Implementing this data capture into one's practice, however, is not a one-size-fits-all venture, and it is critical to determine when, how, and where to include these patient-centered assessments. This installment of the "Evidence-Based Medicine in Otolaryngology" series provides insight into the implementation process and experiences with successful incorporation of PROMs into clinical practice. Specifically, 4 differing clinical scenarios and collection techniques are described, including data acquisition protocols, formats for clinician data usage, and applications of PROM results in clinical and research scenarios.

Montreal Accord on Patient-Reported Outcomes (PROs) use series – Paper 5: patient-reported outcomes can be linked to epidemiologic measures to monitor populations and inform public health decisions

BackgroundA comprehensive picture of population health status can be captured by the incorporation of patient-reported outcome measures into population health monitoring. ObjectiveThe aim of the study was to identify the current state, opportunities, and future research related to the utilization of patient-reported outcome measures for population health monitoring in Canada. DiscussionsPatient-reported outcome measures can help to identify community health needs in public health topics including injury, chronic disease, and communicable disease. They are currently collected in major national surveys in Canada, while electronic medical records, personal health records, and online patient communities could facilitate rapid and cost-effective collection of population-based data. Their effective use requires well-validated measurements and consideration to the factors affecting validity and reproducibility and the modes of administering questionnaires. Methodologically, relevant public health application of patient-reported outcome measures includes analysis assessing measurement comparability across sociodemographically and clinically diverse population and the influence of physical and social environment. Research is needed to develop and apply analytical methods, harmonize patient-reported outcome measures across data sources and health jurisdictions, and link these measures to traditional epidemiologic indicators. Achieving these goals will benefit from collaboration among governmental agencies and expert groups.

Setting the Agenda for Patient-centered Care: Incorporation of Patient-reported Outcome Measures

Setting the Agenda for Patient-centered Care: Incorporation of Patient-reported Outcome Measures

A Cross-Sectional Investigation of Fatigue, Mucositis, Hand-Foot Syndrome and Dysgeusia in Advanced Renal Cell Carcinoma Treatment: Final Results From the FAMOUS Study

BackgroundThe management of symptoms associated with treatment of metastatic renal cell carcinoma (mRCC) is crucial to ensure treatment adherence and outcome. The perception of symptoms can vary between the treating physician and patient, leading to assumptions and subsequent changes in treatment, potentially affecting treatment effectiveness. The aim of the present cross-sectional study was to evaluate the perception of the common symptoms of fatigue, mucositis, hand-foot syndrome, and dysgeusia in patients with mRCC receiving systemic therapies in routine practice. Patients and MethodsGerman patients receiving first-line systemic treatment for mRCC and their physicians were independently queried about the incidence and severity of fatigue, mucositis, hand-foot syndrome, and dysgeusia. Patients also completed the Functional Assessment of Cancer Therapy–General questionnaire to assess their quality of life (QOL). The effect of the 4 symptoms on QOL was analyzed using linear regression modeling. ResultsA total of 63 matching questionnaires were completed by both physicians and patients with first-line treatment. The incidence and severity of symptoms differed between the patients and physicians. Patients rated the severity of symptoms significantly higher than did the physicians. A greater severity of symptoms correlated with a lower QOL. In multivariate regression analysis, fatigue adversely affected overall QOL. ConclusionPhysicians underestimated the severity of common symptoms in patients with mRCC. The incorporation of patient-reported outcome measures into routine practice might increase awareness of patients' overall QOL and thereby potentially improve treatment adherence. A thorough evaluation of fatigue, its potential underlying causes, and active measures to manage fatigue could potentially improve patients' QOL.

The use of patient-reported outcomes becomes standard practice in the routine clinical care of lung–heart transplant patients

Objective:To assess the use of patient-reported outcome (PROs) measures in the routine clinical care of lung–heart transplant patients. We assessed whether the addition of PROs in routine clinical care affected the duration of the consultation and patient’s and clinician’s views.Method:Consecutive lung–heart transplant patients visiting the outpatient clinic, University of Alberta Hospital, completed the Chronic Respiratory Questionnaire (CRQ) and the Health Utilities Index (HUI) on touchscreen computers. Information on the patient’s responses was made available to the members of the transplant team prior to the encounter with the patient. The duration of clinical encounters was noted. At the end of every visit, clinicians completed a questionnaire on the usefulness of having PRO information available. After 6 months patients completed a survey of their experiences.Results:The final patient sample consisted of 172 patients with a mean (SD) age of 52 (13.3) years old; 47% were female; 68% were organ recipients and 32% candidates. The transplant team, comprising four pulmunologists, two nurses, and one pharmacist had an average of 9 years of practical experience in pulmunology. The mean duration of patient–clinician encounters in minutes was 15.15 (4.52). Ninety-eight percent of patients indicated that they would be happy to complete the CRQ and HUI at every clinic visit. Ninety-one percent of the assessments completed by clinicians showed complete satisfaction with the use of PROs in routine practice. Further, the clinicians developed guidelines for the use of PRO information in clinical practice.Conclusions:The incorporation of PRO measures in the routine clinical care of lung–heart transplant patients resulted in a reduction of the duration of patient–clinician encounters. The experience was well accepted by patients and clinicians. We conclude that the routine use of PROs in lung–heart transplant patients has become standard practice.

A Questionnaire Survey of Physicians' Perspectives Regarding the Assessment of Chemotherapy-induced Peripheral Neuropathy in Patients with Breast Cancer

Since there is now growing interest in the incorporation of patient-reported outcome measures in cancer clinical trials, a patient-based questionnaire, the Patient Neurotoxicity Questionnaire (PNQ) was developed to quantify the symptoms and severity of chemotherapy-induced peripheral neuropathy (CIPN). The aim of this study was to evaluate the physicians' perspectives regarding the utility and diagnostic value of PNQ. A questionnaire was sent to 61 physicians who participated in a Phase III randomized trial of adjuvant chemotherapy in breast cancer (AC followed by taxane versus taxane alone) that used the PNQ to assess CIPN. Forty-seven out of 61 physicians (77%) responded. The majority considered neurosensory symptoms the diagnostic hallmark for CIPN and most regarded interference with activities of daily living (ADLs) as definite justification for treatment modifications. For neurosensory disturbance, the majority of physicians indicated that Grade D severity (moderate to severe symptoms interfering with ADLs) should result in treatment postponement and Grade E severity (severe symptoms preventing most ADLs) should result in treatment discontinuation. Similarly, for neuromotor disturbance, over half of the physicians replied that Grade C (moderate symptoms not interfering with ADLs), D and E severity should result in dose reduction, treatment postponement and treatment discontinuation, respectively. Eighty-four percentage of the physicians reported that the use of the PNQ was helpful in the diagnosis and assessment of patients at risk of CIPN. The PNQ appears to be a useful instrument for the diagnosis and grading of CIPN, as well as for clinical decision-making regarding treatment modifications secondary to CIPN.