Using patient-reported outcome measurement to improve patient care.

Patients at the center of care is often the stated focus of clinicians and healthcare services. The quality and safety movement has shown that effective organization of care is needed, in addition to professional skills. This movement has provided professionals and others with methods to improve both organization and practice for patients. These methods include measurement to give those carrying out improvement feedback about the effects of their changes. New types of measures that enable patients to report treatment outcomes can now be use in quality improvement and quality reporting to bring a renewed focus on making care more patient-centered. Although used for some time in research, these measures are relatively new tools for quality improvement and not all research measures are suitable for everyday feedback or improvement projects. The purpose of the paper is to provide an introduction to the use and value of patient-reported outcome measures in quality improvement and to give practical guidance and resources for using PROMs for quality improvement. It draws on the authors' experiences using patient reported outcomes measures for quality research and improvement and their workshop at the 2016 Tokyo ISQUA conference, as well as on reviews and guidance documents about the use of PROMs. It does not provide a comprehensive and systematic review of research, but an overview and introduction to PROMs for quality improvement.

Risk factors for patient-reported errors during cancer follow-up: Results from a national survey in Denmark.

Due to an increased cancer survival, more cancer patients are referred to follow-up after primary treatment. Knowledge of patient safety during follow-up is sparse. OBJECTIVE: To examine patient-reported errors during cancer follow-up and identify factors associated with errors. DESIGN: A national survey on cancer patients' experiences of treatment and aftercare was conducted in 2012, about two years following cancer diagnosis (N=6914). Associations between patient-reported errors during follow-up and covariates were examined using multiple logistic regression. Qualitative responses were analysed using text analysis. RESULTS: This study included 3731 patients, representing a response rate of 64%. Overall, 27.6% of patients reported at least one error during cancer follow-up. 11.7% reported that important information was missing at follow-up consultations; 9.8% were not called in for a follow-up as expected; 16.7% reported that the doctor/nurse handling the follow-up consultation were ill-prepared on their course of disease. Other errors were reported by 4.7%. Patients who reported errors in follow-up were more likely to report an error or complication during primary cancer treatment, not having one health professional with oversight and responsibility for their overall follow-up pathway, be younger, have a diagnosis of rare cancer, poorer self-rated health and high usage of healthcare services. CONCLUSION: Workflows related to handling of test results, referrals, bookings and medical records have to be improved. Introduction of one particular healthcare professional responsible for the patients' follow-up may result in fewer patient-reported errors however interventions are needed to examine this. Patients prone to errors should be subject to particular attention.

Being Young and Getting Cancer: Development of a Questionnaire Reflecting the Needs and Experiences of Adolescents and Young Adults with Cancer.

PURPOSE: Cancer is the leading cause of nonaccidental deaths among adolescents and young adults (AYAs). In Denmark, there are substantial gaps in knowledge concerning how AYAs with cancer perceive their diagnostic and therapeutic trajectory and report health-related outcomes. The aim of this study is to describe the development of a questionnaire targeting AYAs with cancer aiming to evaluate treatment and survivorship from the perspective of the patients. METHODS: Identification of themes and development of items included in the questionnaire were based on a synthesis of literature and qualitative interviews with AYAs in an iterative process involving both a professional advisory panel and a youth panel. During the development process, items were validated through cognitive interviews. RESULTS: The final questionnaire contained 151 closed- and open-ended items divided into 6 sections regarding: (1) "Time before treatment," (2) "Being told about your illness," (3) "Being a young patient," (4) "Your treatment," (5) "Receiving help living with and after Cancer," and (6) "How are you feeling today?." One hundred one items were specifically developed for this study, while 50 were standardized validated indexes. The questionnaire combined different types of items such as needs, preferences, experiences, and patient-reported outcomes. CONCLUSION: This is one of few developed questionnaires aiming to evaluate the perspective of AYAs with cancer through their whole cancer trajectory. Results from the questionnaire survey are intended for quality improvements and research in AYA cancer care. The study highlights the importance of an extensive patient involvement in all steps of a questionnaire development process.

[Cancer patients' experiences contribute to more patient-centred care]. / Kræftpatienters oplevelser bidrager til øget patientcentrering.

In the Region of Southern Denmark, Vejle Hospital has taken the first step toward measuring patient-centred care from cancer patient's perspective. Based on results from a local patient survey this article aims to evaluate how Vejle Hospital is per­forming with regard to principles for patient-centred care in different parts of the cancer trajectory. The survey provides unique data at ward level and opportunities to initiate targeted improvement efforts for cancer patients to monitor improve­ments in patient-experienced care, which is crucial to become truly patient-centred.

[Case managers experience improved trajectories for cancer patients after implementation of the case manager function]. / Koordinatorerne oplever bedre forløb for kræftpatienter efter indførelsen af forløbskoordinationsfunktionen.

Case managers are increasingly used to optimize trajectories for patients. This study is based on a questionnaire among case managers in cancer care, aiming at the clarification of the func­tion and its impact on especially patient safety, when handing over the responsibility. The results show a major variation in how the function is organized, the level of competence and the task to be handled. The responsibility has in general been nar­rowed to department level. Overall, the case managers believe that the function has optimized pathways for cancer patients and improved safety, but barriers persist.

Cancer patients' preferences of care within hospitals: a systematic literature review.

PURPOSE: Knowledge about cancer patients' preferences in health care is important because it enables care to be patient centered. However, the literature does not provide an overview. The aim of this study was to identify the dimensions of hospital-based cancer care that patients evaluate the most important using Patient-rated importance as a method. DATA SOURCE: PubMed was searched in 2013/2014. STUDY SELECTION: Studies were identified, if they were in accordance with specific search terms and focused on hospital-based cancer care. Totally, 11 studies were found. DATA EXTRACTION: The 11 studies comprised a total of 598 items. Of these, 592 items were categorized into 19 care dimensions. The highest rated quartile of items was identified as care elements patients evaluated to be the most important. Identification of the most important dimensions was done by calculating the percentages of items within each dimension that were within the highest quartile. RESULTS OF DATA SYNTHESIS: The 11 studies varied a lot in regard to aim and patient characteristics. The three most important dimensions were as follows: Rapid diagnosis and treatment; High professional standard; and Information about treatment and side(effects)/consequences. Within four dimensions, Psychosocial support, Physical facilities, Waiting time and Transparency in care, no items were within the highest quartile. CONCLUSION: Patient-rated importance was a useful method in identifying the care patients preferred. Due to a limited number of studies and great diversity within studies evaluated, interpretation of results should be cautious. However, it seems that cancer patients treated in hospitals with a curative intent find treatment-related information, professional standard and short delay of diagnosis and treatment most important.

Attention to cancer patients' safety after primary treatment is needed.

INTRODUCTION: Knowledge about patient safety issues after primary treatment of cancer is sparse. METHODS: The present article is a retrospective analysis of adverse events (AEs) after primary cancer treatment to characterise the types of AEs and their consequences. A total of 724 AEs reported from 2010 to 2013 were identified via the Danish Patient Safety Database. The International Classification for Patient Safety was used to characterise event types. Consequences were characterised as either psychical harm or delay. We focused on AEs in care transitions. RESULTS: Common event types were administrative processes (58%), communication and documentation (56%), clinical processes (42%) and medication (27%). 46% of AEs led to physical harm. 4% resulted in severe physical harm or death. 18% resulted in delay in diagnosis of relapse or new cancer, treatment or referral. 50% of all AEs were related to care transitions. The AEs in care transitions carry great potential for prevention as they often relate to inadequate administrative practices, poor communication and documentation, or to unclear transferal of responsibility for the patient. CONCLUSION: Attention to patient safety after primary cancer treatment is required. The identification of a substantial number of AEs in care transitions stresses a need for increased continuity and clear transfer of responsibility in cancer care after primary treatment. To support learning from AEs, the AE reports should provide more details on the contextual factors.

[An introduction to patient reported outcome measures in quality assessment]. / En introduktion til patient reported outcome measures i kvalitetsarbejdet.

Patient reported outcome measures (PROM) have the potential to change how we measure quality in health care as well as promoting patient centered care. PROMs are any report of the status of a patient's health condition that comes directly from the patient, without interpretation of the patient's response by a clinician or anyone else. PROMs are used on an aggregated level to measure differences in quality between providers of health care. PROMs are also used on an individual level to address the patients' most bothersome needs. National consensus on development and implementation of PROM is needed.

[Case managers experience improved trajectories for cancer patients after implementation of the case manager function].

Case managers are increasingly used to optimize trajectories for patients. This study is based on a questionnaire among case managers in cancer care, aiming at the clarification of the function and its impact on especially patient safety, when handing over the responsibility. The results show a major variation in how the function is organized, the level of competence and the task to be handled. The responsibility has in general been narrowed to department level. Overall, the case managers believe that the function has optimized pathways for cancer patients and improved safety, but barriers persist.

[Cancer patients' experiences contribute to more patient-centred care].

In the Region of Southern Denmark, Vejle Hospital has taken the first step toward measuring patient-centred care from cancer patient's perspective. Based on results from a local patient survey this article aims to evaluate how Vejle Hospital is performing with regard to principles for patient-centred care in different parts of the cancer trajectory. The survey provides unique data at ward level and opportunities to initiate targeted improvement efforts for cancer patients to monitor improve-ments in patient-experienced care, which is crucial to become truly patient-centred.

Does adding an appended oncology module to the Global Trigger Tool increase its value?

OBJECTIVE: To determine any additional value in the evaluation of safety levels by adding an appended oncology module to the Institute for Healthcare Improvement's Global Trigger Tool (GTT). DESIGN: Comparison of two independent retrospective chart reviews: one review team using the general GTT method and one using the general GTT method plus the appended oncology module on the same inpatient charts. SETTING: The Department of Clinical Oncology at a Danish University Hospital (1000 beds). PARTICIPANTS: All inpatients admitted to the hospital in 2010, n = 3692, biweekly sample of 10 admission charts resulting in a double review of 240 charts. MAIN OUTCOME MEASURES: Total number of identified adverse events (AEs), distribution of identified AEs in the harm categories of the National Coordinating Council for Medication Error Reporting and Prevention (NCC MERP), AEs per 100 admissions and AEs per 1000 admission days. RESULTS: No significant (95% confidence interval) difference was found between review teams using the general GTT versus the general GTT plus the appended oncology module on the total number of identified AEs, AEs per 100 admissions, AEs per 1000 admission days or in the overall distribution of identified AEs in the five NCC MERP harm categories. CONCLUSIONS: The study showed that adding the appended oncology module to the GTT did not increase its value regarding the evaluation of safety levels. This finding could be due to the measurement error of the GTT. Further studies evaluating the measurement properties and the specific additional modules to the general GTT are needed.

Current organisation of follow-up does not meet cancer patients' needs.

INTRODUCTION: For cancer patients, traditional follow-up care is considered unsuitable and unsustainable. The patient perspective seems often to be absent in the ongoing debate about alternative strategies for follow-up care. Based on a national survey from 2012, the objective of this study was to examine cancer patients' support needs regarding physiological and emotional problems during follow-up and to identify factors associated with their needs and any unmet needs. MATERIAL AND METHODS: Patients diagnosed with cancer in the period from April to September 2010 were invited to participate. A total of 4,401 patients responded (response rate = 64%). The risks in terms of prevalence rate ratios of having needs and unmet needs for both physiological and emotional problems were estimated using the Poisson regression. RESULTS: The study showed that 60% of the patients had needs for support regarding physiological and emotional problems, and half of the patients reported unmet needs. Younger patients and patients with co-morbidity were more likely to report needs and unmet needs for physiological and emotional support. Treatment complexity and setting of follow-up were not associated with unmet needs. CONCLUSION: The study underlines that the current organisation of follow-up does not meet cancer patients' needs. Several factors are associated with both needs and unmet needs. Hence, a more sustainable approach for follow-up care may consist in stratification tailored to the patients' different needs. In such an approach, more focus should be on age-specific needs and the impact of co-morbidity. FUNDING: The study is funded by the Danish Cancer Society. TRIAL REGISTRATION: The study was approved by the Danish Data Protection Agency (J. no. 2010-41-4694). According to the Danish Act on Research Ethics Review of Health Research Projects (S. 8(3) of Act No. 402 of 28 May 2003), no ethical approval was needed.

Assessment of the global trigger tool to measure, monitor and evaluate patient safety in cancer patients: reliability concerns are raised.

BACKGROUND: Countries around the world are currently aiming to improve patient safety by means of the Institute for Healthcare Improvement global trigger tool (GTT), which is considered a valid tool for evaluating and measuring patient safety within organisations. So far, only few data on the measurement properties and utility of the GTT have been published. AIMS: To determine and evaluate the effect of interrater variation between review teams on the standard outcome measures of the GTT and to assess and quantify measurement error of the GTT. METHODS: Retrospective chart reviews were conducted on identical charts by two independent review teams in 2010 at a department of oncology in a university hospital. Standard GTT outcome measurements were obtained and compared between teams using statistical process control (SPC) charts. A Bland-Altman plot assessed measurement error and limits of agreement. RESULTS: Only 31% of adverse events (AE) were identified by both teams, and further differences in categorisation of identical events was found. Moderate interrater agreement (κ=0.45) between teams gave rise to different conclusions on the patient safety process when monitoring using SPC charts. The Bland-Altman plot suggests little systematic error but large random error. CONCLUSIONS: Review teams may identify different AE and reach different conclusions on the safety process when using the GTT on identical charts. Tracking true change in the safety level is difficult due to measurement error of the GTT. The results do not encourage further use of the GTT until additional evaluation studies on the measurement properties of the GTT have been conducted.

Uncertain added value of Global Trigger Tool for monitoring of patient safety in cancer care.

INTRODUCTION: Monitoring patient safety is a challenging task. The lack of a golden standard has contributed to the recommendation and introduction of several methods. In 2000 the Danish Lung Cancer Registry (DLCR) was established to monitor the clinical management of lung cancer. In 2008 the Global Trigger Tool (GTT) was recommended in Denmark as a tool for the monitoring of patient safety. Ideally, the recommendation of a new tool should be preceded by a critical assessment of its added value. MATERIAL AND METHODS: Data on complications related to lung cancer surgery from the Department of Cardiothoragic Surgery at Odense University Hospital were collected using the DLCR and the GTT in 2008. The capacity of these two methods to identify complications is compared and discussed. RESULTS: A total of 59 complications were registered in the DLCR, while 58 complications were registered using the GTT. The two methods were equally good at identifying complications, but the DLCR seemed to be borderline significantly better at detecting arrhythmia, while the GTT was significantly better at detecting "other events". CONCLUSION: Nearly half of the adverse events identified with the GTT were complications which were also registered by type in the DLCR. The two methods were almost equally good at identifying specific types of complications, but the GTT identified more "other events". The majority of these events were well-known to clinicians. The comparison illustrates why the implementation of new methods should be preceded by critical assessment. In this case, it is crucial to assess whether the current method should be modified by the addition of more patient safety indicators rather than by introducing a new method that partly duplicates existing data.

Safety hazards in cancer care: findings using three different methods.

BACKGROUND: Patients with cancer are at risk of injury during treatment. Some injuries are preventable, but prevention requires knowledge about the hazards. Aims To identify hazards and injuries relating to Danish patients with cancer (types and severity) and to test three different methods of identifying cancer-specific hazards. METHODS: Adverse events in cancer care were identified through reports from healthcare staff to the Danish Patient Safety Database, a retrospective chart review using the Global Trigger Tool, and reports to the Danish Cancer Society from patients with cancer and their relatives. Events were typed using the draft International Classification for Patient Safety. Severity was assessed by Safety Assessment Coding, the National Coordinating Council for Medication Error Reporting and Prevention (NCC MERP) and qualitative assessment. RESULTS: 2429 cancer-related adverse event reports were found on the Danish Patient Safety Database, 260 adverse events were identified using the Global Trigger Tool, and 151 safety events were reported by patients and their relatives. Cancer-specific adverse events and general safety problems were identified. In most cases injury to patients was temporary but severe and permanent injury occurred with a relatively high frequency. CONCLUSION: Patients with cancer are at risk of injury from cancer treatment procedures and as a consequence of problems related to administrative processes and communication. Types of identified events varied according to the methods used, and each method added new information. Further research on patient safety in cancer care and safety-enhancing activities is needed.

[Quality management in Danish health care--from development to control?]. / Regulering af kvalitet i sundhedsvaesenet--fra udvikling til kontrol?

This article defines the concept of "quality management" and describes the development in quality management in Danish health care. We claim that a shift in form and focus of such management has occurred. When quality improvement was introduced as a concept in Danish health care approximately 20 years ago, the efforts started out as ad hoc projects driven by professionals. It has now taken the form of a strategic and top-down driven process in which the national health authorities play a central role. Three cases are used to illustrate this development: management of patient safety, the new Danish accreditation model and the Danish "star rating system".

[Quality monitoring of cancer care pathways]. / Monitorering af kvalitet i kraeftpatienters forløb.

Monitoring of the cancer patient pathway in Denmark is characterized by fragmentation along the pathway as well as across the usual dimensions of quality assessment (i.e. clinical, organizational and patient-perceived quality). There are many sources of data but no single organisation has a comprehensive overview. Especially at the beginning (the GPs) and at the end (rehabilitation) of the pathways, there are severe monitoring gaps. In the field of cancer treatment, the best data is clinical, while organizational data is patchy and patient-perceived quality is just about to gain foothold. Addressing these monitoring challenges is necessary to provide an accurate picture of the overall quality of Danish cancer care.

[User involvement in the Danish health care sector]. / Brugerinddragelse i sundhedsvaesenet.

The aim of the health services is to ensure an optimal result for its users. It is documented that involvement has a positive impact on treatment, and in many respects patients take another view on the concept of quality than does health personnel. In Denmark every fifth patient experiences insufficient involvement in his or her own course of treatment - furthermore, the patient perspective is given insufficient attention and there is a general lack of user representation and user surveys in the processes shaping the organization of the health services and cultural issues. A national strategy is needed.

[Clinical leaders' and staff's assessment of the current quality related to the patient pathways and expectations of and knowledge about accreditation--a baseline evaluation in Copenhagen County]. / Lederes og medarbejderes vurdering, forventninger og kendskab til akkreditering--en førmåling på sygehuse i Københavns Amt.

INTRODUCTION: In the preparation for accreditation in Copenhagen County the commitment of clinical leaders and staff members is crucial. The objectives of these surveys are to examine the leaders' and the staff's assessment of quality improvement and their expectations and knowledge about accreditation, as well as the staff's advice concerning the further planning. MATERIALS AND METHODS: Two surveys among clinical leaders and staff members were carried out. RESULTS: Statistically, significant differences between staff and leaders were found in many areas concerning quality improvement and knowledge about accreditation. Leaders and staff both had high expectations of the use of accreditation as a tool for quality improvement, thus no statistically significant difference between expectations were found. CONCLUSION: The overall positive expectation for accreditation as a tool for quality improvement is an excellent basis for the accreditation process. The different assessments in quality among leaders/staff and positions show the need to involve all personnel in the organization. A survey about patient experiences includes the same subjects as the survey among staff and leaders. A striking discrepancy between the evaluation of quality by patients and by the leaders and staff in specific areas was found; therefore further investigations will be carried out.

[Patient-experienced quality assessed in two national surveys]. / Patientoplevet kvalitet belyst ved to nationale undersøgelser.

INTRODUCTION: Surveys of patients' experiences can be used for other purposes than to disclose patients' overall satisfaction. They can, for example, also be used to select focus areas in the health care sector. In this article two large national surveys of patient-experienced quality are compared. The advantages and disadvantages of the applied methods and various applications of the surveys are discussed. MATERIALS AND METHODS: The Danish National Patient Satisfaction Survey was based on a questionnaire with questions about patients' experiences. The questionnaires were sent to the patients after discharge. All 62 public Danish hospitals were included. The Patient Reports Survey was based on a questionnaire with questions about whether the patient had received certain services. The questionnaire was given to each patient on the day of discharge and returned before the patient left the hospital. All medical wards were invited to participate in the survey. RESULTS: Despite differences in questions, design and methods, the two surveys showed agreement in the areas where patients experienced flaws in the quality of services. CONCLUSION: In future surveys the advantages and disadvantages of data feedback, inclusion on the basis of data registers, sample sizes and the possibility of being supplied with ward-specific data should be taken into consideration. The advantages and disadvantages of involving employees should be counterbalanced in each survey. The Danish National Patient Satisfaction Survey is suitable for external evaluation and benchmarking between hospitals, while the applied methods in the Patient Reports Survey are best suited to internal self-evaluation and quality improvement within hospital departments.