ABSTRACT
BACKGROUND: Value-based health care is increasingly used to facilitate a systematic approach during follow-up of patients. We developed Healthcare Monitor (HM): a structure of electronic patient-reported outcome measures (ePROs) for the longitudinal follow-up of head and neck cancer (HNC) patients. This study shares key lessons from implementation and seeks to provide insight into how patients experience HM. METHODS: We conducted a mixed-methods study using quantitative data from a nonrandomized retrospective survey of patients who received HM (n = 45) vs standard care (n = 46) and qualitative data from structured interviews (n = 15). RESULTS: Implementation of HM included significant challenges. Finding common ground among clinicians, administrators, and IT staff was most important. Qualitative findings suggest that patients experienced better doctor-patient communication and increased efficiency of the consultation using HM. Patients felt better prepared and experienced more focus on critical issues. Quantitative analysis did not show significant differences. CONCLUSIONS: Integration of HM into routine care for HNC patients may have increased patient-centered care and facilitated screening of symptoms. However, future research is needed to analyze the potential benefits more extensively.
Subject(s)
Head and Neck Neoplasms , Patient Reported Outcome Measures , Delivery of Health Care , Head and Neck Neoplasms/therapy , Humans , Medical Oncology , Retrospective StudiesABSTRACT
In this era of information technology, big data analysis is entering biomedical sciences. But what is big data, where do they come from and what can we do with it? In this commentary, the main sources of big data are explained, especially in (head and neck) oncology. It also touches upon the need to integrate various sources of clinical, pathological and quality-of-life data. It discusses some initiatives in linking of such datasets on a nation-wide scale in the Netherlands. Finally, it touches upon important issues regarding governance, FAIRness of data and the need to bring into place the necessary infrastructures needed to fully exploit the full potential of big data sets in head and neck cancer.
Subject(s)
Big Data , Medical Informatics/methods , Medical Oncology , Databases, Factual , Head and Neck Neoplasms/epidemiology , Humans , Information Dissemination , Medical Oncology/methods , Netherlands/epidemiology , Precision Medicine/methods , Quality of Health CareABSTRACT
IMPORTANCE: Patients, governments, health care providers, and insurance companies show an increased interest in health outcomes, especially in centralized medical care, such as cleft lip nose treatment. Transparent outcome reporting requires a thorough methodological design, dedicated prospective data collection process, and, preferably, no interference with the efficacy of daily practice. OBJECTIVE: To describe the implementation of an automated and prospective secondary cleft lip rhinoplasty outcome routine. DESIGN, SETTING, AND PARTICIPANTS: A prospective analytic cohort pilot study was conducted among 123 consecutive patients referred for secondary cleft lip rhinoplasty from July 1, 2014, to March 31, 2018, at an academic teaching hospital. EXPOSURES: Secondary cleft lip rhinoplasty or revision. MAIN OUTCOMES AND MEASURES: Preoperative and 3- and 12-month postoperative scores on the Nasal Obstruction Symptom Evaluation scale (range 0-100, lower scores indicate better outcome), Utrecht Questionnaire (range 0-100, lower scores indicate better outcome), and visual analog scales (range 0-10: 0, no obstruction; 10, completely blocked nose) were obtained. Data were exported for automated statistical outcome analysis that was supported by graphic output on a customized web-based dashboard. RESULTS: Of the 123 patients (68 male and 55 female; mean age, 23 years [range, 17-68 years]) included in the outcome routine, 103 patients (57 male and 46 female; mean age, 22 years [range, 17-50 years]) were eligible for surgery. The web-based dashboard provided demographic characteristics, reasons that surgery was not performed or indicated, and real-time, short- and long-term change in functional and aesthetic outcome after secondary cleft lip rhinoplasty. Among 66 patients with sufficient follow-up, mean (SD) Nasal Obstruction Symptom Evaluation sum scores after rhinoplasty improved from 30.8 (27.6), which is comparable to a moderate problem, to 19.2 (22.2), which is comparable to a very mild problem (P < .001), and mean Utrecht Questionnaire sum scores decreased from 13.1 (5.6) to 7.1 (3.3) (P < .001). CONCLUSIONS AND RELEVANCE: Routine prospective outcome monitoring provides an evidence-based response to the increasing demand for transparency in health care. The web-based dashboard used during patient counseling, selection, and management of expectations has the potential to compare results of secondary cleft lip rhinoplasty between surgeons and institutions provided that the populations share similar characteristics. The administrative interference with a busy daily practice was limited. LEVEL OF EVIDENCE: 4.
Subject(s)
Cleft Lip/surgery , Esthetics , Outcome Assessment, Health Care/methods , Patient Satisfaction , Rhinoplasty/methods , Adolescent , Adult , Aged , Female , Humans , Male , Middle Aged , Pilot Projects , Prospective Studies , ReoperationABSTRACT
BACKGROUND: Patients, governments, health care providers, and insurance companies are increasingly interested in medical performance. Transparent outcome reporting requires a thorough methodologic design, dedicated prospective data collection process, and preferably no interference with the efficacy of daily practice. The primary aim of this article is to describe how these bottlenecks are tackled with an automated prospective rhinoplasty outcome routine. The secondary aim is to motivate others by describing practical benefits encountered during implementation. METHODS: Since April 2014, 269 consecutive patients referred for functional-aesthetic (revision) rhinoplasty were included. The Nasal Obstruction Symptom Evaluation scale, the Utrecht Questionnaire, and visual analogue scales were offered to all patients before primary consultation and follow-up to translate the subjective burden of nasal problems and change herein following surgery, into data. These data were exported for real-time automated outcome analysis supported by graphic output through a customized Web-based dashboard. RESULTS: One hundred seventy-one patients proved eligible for rhinoplasty, of which 121 had sufficient follow-up. The dashboard provides an overview of demographic characteristics of different populations, reasons why rhinoplasties were not performed, and real-time short- and long-term change in functional and aesthetic outcome in both primary and revision cases. Practical benefits of the instruments used are presented and discussed. CONCLUSIONS: Routine prospective outcome monitoring provides an evidence-based response to the increasing demand for transparency in health care. The dashboard proved valuable during patient counseling, patient selection, and management of expectations and has the potential to compare rhinoplasty results between surgeons and institutions, provided that the populations share similar characteristics. CLINICAL QUESTION/LEVEL OF EVIDENCE: Therapeutic, IV.