Care Outcome Measures Research Articles

Using normalization process theory to evaluate the use of patient-centred outcome measures in specialist palliative home care—a qualitative interview study

BackgroundStandardised use of patient-centred outcome measures (PCOMs) improves aspects of quality of care. Normalization Process Theory (NPT) considers the social (inter-)actions of implementation processes operationalised through four constructs: coherence-building, cognitive participation, collective action and reflexive monitoring. The aim of the study was to identify barriers and enablers for the successful use of PCOMs in specialist palliative home care (SPHC) using NPT, to collect clinically meaningful and reliable data to improve patient outcomes.MethodsQualitative study using semi-structured interviews with palliative care professionals from German SPHC teams who participated in a study using PCOMs. Data were analysed using Framework analysis, and contextualised within NPT.ResultsSeventeen interviews across five teams were conducted. Some teams already had an understanding of what PCOMs are and how to use them, based on previous experience. In other teams, this understanding developed through the perception of the benefits (coherence). Participation and engagement depended on individuals and was decisive for coherence-building. The attitude of the management level also played a major role (cognitive participation). Integration of PCOMs into everyday clinical practice varied and depended on the manifestation of the first two constructs and other already established routines (collective action). In the context of appraisal, both positive (e.g. focus on patient) and negative aspects (e.g. additional work) of using PCOMs were mentioned (reflexive monitoring).ConclusionsAlthough benefits of using PCOMs were partly recognised, not all teams continued standardised use. Here, not only the social (inter-)actions, but also the influence of the context (working environment) were decisive. Future implementation strategies should consider integrating PCOMs in existing electronic patient records, education sessions supporting coherence-building, internal facilitators/local champions, and ensuring frequent data analyses as it is beneficial and increases the readiness of using PCOMs.

Exploring patient perspectives on electronic patient-reported outcome measures in home-based cancer palliative care: A qualitative study.

Electronic patient-reported outcomes (ePROMs) enhance symptom management and patients' engagement in palliative cancer care. However, integrating them into this setting brings challenges, including patients' familiarity with technological devices and declining health status. Prioritizing the patient's acceptability and feasibility is crucial for their adoption. However, more knowledge is needed about patients' perspectives on the adoption of ePROMs in the community, especially for home-based palliative care. Explore patient viewpoints on utilizing ePROMs for symptom reporting in home-based oncology palliative care. A qualitative interpretative approach was used to evaluate patients' points of view on using ePROMs in this specific care setting. Semistructured interviews were carried out. Data were analyzed using a reflexive thematic analysis. A total of 25 patients receiving oncological home palliative care from the advanced palliative care unit of the Fondazione IRCCS Istituto Nazionale dei Tumori in Milan, Italy, were invited to participate. Twenty interviews were conducted, as five patients declined due to deteriorating health. Four themes were identified: (1) strategic value of ePROMs and subjective appreciation; (2) enhancing patient centeredness through ePROMs; (3) exploring and addressing concerns about the use of ePROMs and (4) intersecting factors influencing the efficacy of ePROMs. Despite initial reticence, home palliative care patients consider ePROMs as potentially valuable allies monitoring symptoms, enhancing their quality of life, and amplifying their voices on less explored aspects of care. Continuous dialog between healthcare professionals and patients is crucial for addressing patient skepticism about ePROMs and their impact on the human aspect of care.

Involving Patients and Clinicians in the Design of Wireframes for Cancer Medicines Electronic Patient Reported Outcome Measures in Clinical Care: Mixed Methods Study.

Cancer treatment is a key component of health care systems, and the increasing number of cancer medicines is expanding the treatment landscape. However, evidence of the impact on patients has been focused more on chemotherapy toxicity and symptom control and less on the effect of cancer medicines more broadly on patients' lives. Evolving electronic patient-reported outcome measures (ePROMs) presents the opportunity to secure early engagement of patients and clinicians in shaping the collection of quality-of-life metrics and presenting these data to better support the patient-clinician decision-making process. The aim of this study was to obtain initial feedback from patients and clinicians on the wireframes of a digital solution (patient app and clinician dashboard) for the collection and use of cancer medicines ePROMs. We adopted a 2-stage, mixed methods approach. Stage 1 (March to June 2019) consisted of interviews and focus groups with cancer clinicians and patients with cancer to explore the face validity of the wireframes, informed by the technology acceptance model constructs (perceived ease of use, perceived usefulness, and behavioral intention to use). In stage 2 (October 2019 to February 2020), the revised wireframes were assessed through web-based, adapted technology acceptance model questionnaires. Qualitative data (stage 1) underwent a framework analysis, and descriptive statistics were performed on quantitative data (stage 2). Clinicians and patients with cancer were recruited from NHS Greater Glasgow & Clyde, the largest health board in Scotland. A total of 14 clinicians and 19 patients participated in a combination of stage 1 interviews and focus groups. Clinicians and patients indicated that the wireframes of a patient app and clinician dashboard for the collection of cancer medicines ePROMs would be easy to use and could focus discussions, and they would be receptive to using such tools in the future. In stage 1, clinicians raised the potential impact on workload, and both groups identified the need for adequate IT skills to use each technology. Changes to the wireframes were made, and in stage 2, clinicians (n=8) and patients (n=16) indicated it was "quite likely" that the technologies would be easy to use and they would be "quite likely" to use them in the future. Notably, clinicians indicated that they would use the dashboard to enable treatment decisions "with around half" of their patients. This study emphasizes the importance of consulting both patients and clinicians in the design of digital solutions. The wireframes were perceived positively by patients and clinicians who were willing to use such technologies if available in the future as part of routine care. However, challenges were raised, and some differences were identified between participant groups, which warrant further research.

Case-mix adjustments for patient reported experience and outcome measures in primary care: an empirical approach to identify patient characteristics as case-mix adjusters based on a secondary analysis of an international survey among patients and their general practitioners in 34 countries

BackgroundCase-mix adjustment of patient reported experiences (PREMs) and outcomes (PROMs) of care are meant to enable fair comparison between units (e.g. care providers or countries) and to show where improvement is possible. It is important to distinguish between fair comparison and improvement potential, as case-mix adjustment may mask improvement potential. Case-mix adjustment takes into account the effect of patient characteristics that are related to the PREMs and PROMs studied, but are outside the sphere of influence of the units being compared. We developed an approach to assess which patient characteristics would qualify as case-mix adjusters, using data from an international primary care study.ResultsWe used multilevel analysis, with patients nested in general practices nested in countries. Case-mix adjustment is indicated under the following conditions: there is a main effect of the potential case-mix adjuster on the PREM/PROM; this effect does not vary between units; and the distribution of the potential case-mix adjuster differs between units. Random slope models were used to assess whether the impact of a potential case-mix adjuster varied between units. To assess whether a slope variance is big enough to decide that case-mix adjustment is not indicated, we compared the variances in the categories of a potential case-mix adjuster. Significance of the slope variance is not enough, because small variances may be significantly different from zero when numbers are large. We therefore need an additional criterion to consider a slope variance as important. Borrowing from the idea of a minimum clinically important difference (MCID) we proposed a difference between the variances of 0.25*variance (equivalent to a medium effect size). We applied this approach to data from the QUALICOPC (Quality and costs of primary care in Europe) study.ConclusionsOur approach provides guidance to decide whether or not patient characteristics should be considered as case-mix adjusters. The criterion of a difference between variances of 0.25*variance works well for continuous PREMs and PROMs, but seems to be too strict for binary PREMs and PROMs. Without additional information, it is not possible to decide whether important slope variation is the result of either differences in performance between general practices or countries, or cultural differences.

Electronic Patient Reported Outcome Measures for Optimal Remote Symptom Management in Advanced Breast Cancer: Embracing Digital Health Technology

ObjectiveTo review the use of electronic patient outcome measures (ePROMs) in advanced breast cancer (ABC) and its effectiveness in supporting remote symptom monitoring. Data SourcesAn overview of published randomized controlled trials using electronic patient-reported outcome measures (ePROMs) in ABC care. ConclusionThe use of ePROMs in ABC care combined with oncology clinical nurse specialist (CNS) interventions has shown that patient-centered care through remote monitoring of disease and treatment symptoms can improve ABC patient outcomes and experience. Implications for Nursing PracticeOncology clinical nurse specialists (CNSs) have an important role in the effective implementation of ePROMs in ABC care. CNSs are considered most appropriate to lead on and respond to ePROMs, addressing complex symptom issues and maximizing the quality of life (QoL) for the ABC patient. CNSs are a crucial link between the patient, primary and secondary level care health professionals, and the ePROM portal for ABC care.

Validation of an AI-assisted Treatment Outcome Measure for Gender-Affirming Voice Care: Comparing AI Accuracy to Listener’s Perception of Voice Femininity

OBJECTIVESThere is currently a lack of objective treatment outcome measures for transgender individuals undergoing gender-affirming voice care. Recently, Bensoussan et al. developed an AI model that is able to generate a voice femininity rating based on a short voice sample provided through a smartphone application. The purpose of this study was to examine the feasibility of using this model as a treatment outcome measure by comparing its performance to human listeners. Additionally, we examined the effect of two different training datasets on the model’s accuracy and performance when presented with external data. METHODS100 voice recordings from 50 cisgender males and 50 cisgender females were retrospectively collected from patients presenting at a university voice clinic for reasons other than dysphonia. The recordings were evaluated by expert and naïve human listeners, who rated each voice based on how sure they were the voice belonged to a female speaker (% voice femininity [R]). Human ratings were compared to ratings generated by (1) the AI model trained on a high-quality low-quantity dataset (voices from the Perceptual Voice Quality Database) (PVQD model), and (2) the AI model trained on a low-quality high-quantity dataset (voices from the Mozilla Common Voice database) (Mozilla model). Ambiguity scores were calculated as the absolute value of the difference between the rating and certainty (0 or 100%). RESULTSBoth expert and naïve listeners achieved 100% accuracy in identifying voice gender based on a binary classification (female >50% voice femininity [R]). In comparison, the Mozilla-trained model achieved 92% accuracy and the previously published PVQD model achieved 84% accuracy in determining voice gender (female > 50% AI voice femininity). While both AI models correlated with human ratings, the Mozilla-trained model showed a stronger correlation as well as lower overall rating ambiguity than the PVQD-trained model. The Mozilla model also appeared to handle pitch information in a similar way to human raters. CONCLUSIONSThe AI model predicted voice gender with high accuracy when compared to human listeners and has potential as a useful outcome measure for transgender individuals receiving gender-affirming voice training. The Mozilla-trained model performed better than the PVQD-trained model, indicating that for binary classification tasks, quantity of data may influence accuracy more than quality of the data used for training the voice AI models.

Outcomes that matter most to burn patients: A national multicentre survey study in the Netherlands

BackgroundThe use of patient-reported outcomes to improve burn care increases. Little is known on burn patients’ views on what outcomes are most important, and about preferences regarding online Patient Reported Outcome Measures (PROMs). Therefore, this study assessed what outcomes matter most to patients, and gained insights into patient preferences towards the use of online PROMs. MethodsAdult patients (≥18 years old), 3–36 months after injury completed a survey measuring importance of outcomes, separately for three time periods: during admission, short-term (<6 months) and long-term (6–24 months) after burn injury. Both open and closed-ended questions were used. Furthermore, preferences regarding the use of patient-reported outcome measures in burn care were queried. ResultsA total of 140 patients were included (response rate: 27%). ‘Not having pain’ and ‘good wound healing’ were identified as very important outcomes. Also, ‘physical functioning at pre-injury level’, ‘being independent’ and ‘taking care of yourself’ were considered very important outcomes. The top-ten of most important outcomes largely overlapped in all three time periods. Most patients (84%) had no problems with online questionnaires, and many (67%) indicated that it should take up to 15 minutes. Patients’ opinions differed widely on the preferred frequency of follow-up. ConclusionsNot having pain and good wound healing were considered very important during the whole recovery of burns; in addition, physical functioning at pre-injury level, being independent, and taking care of yourself were deemed very important in the short and long-term. These outcomes are recommended to be used in burn care and research, although careful selection of outcomes remains crucial as patients prefer online questionnaires up to 15 minutes.

Frequency of standardized patient-reported outcome measures in routine clinical care of patients with cancer.

342 Background: Patient-reported outcomes (PROs) assess a patient’s self-reported health status, including disease symptoms, treatment experience, functional outcomes, and quality of life. Incorporation of PROs has been linked to improved patient symptom control and increased shared decision making. Standardized PRO measures (PROMs) are becoming more frequent as an endpoint for clinical trials, however their use is less frequent in routine care for patients with cancer. The goal of this study was to assess the utilization of PROMs and identify barriers to their use. Methods: US-licensed oncologists/hematologists convened at one of three live meetings in 2023 to review recent clinical updates. Respondent demographics were collected ahead via an online survey. During the meetings, participants responded to queries on their use and perceptions of PROs and PROMs. Responses were captured via audience response system technology; not all participants answered every question. Pooled data were summarized using descriptive statistics. Results: Of the 146 respondents, 77.4% self-identified as community-setting providers, spent 84.3% of their time seeing patients, saw an average of 19.8 patients/day, and averaged 17.7 years of experience. Respondents found PROs to be most useful in early detection/management of treatment toxicities and symptoms (63.8%) and tailoring of clinical/supportive care (56%). The majority of PROs are typically recorded through informal verbal inquiries, while 18.1% and 10.9% of respondents use validated and non-validated PROMs, respectively. Few respondents (11.3%) administer PROMs to every patient at every visit, while over one-third (38.3%) never administer PROMs. Within the practice, medical assistants and nurses are most likely to be the provider administering PROMs. PROMs are most commonly administered when the patient is in the office and are infrequently administered through other means. Lack of time to administer or review PRO surveys (45.1%), and lack of reimbursement (38.9%) and EMR integration (38.9%) were the most common reported barriers to using PROMs in the respondents’ practices. Conclusions: Despite the majority of respondents finding PROs useful in practice, a minority use formal measures to record PROs. Further, usage is infrequent across patient visits. Lack of time, lack of reimbursement, and logistic barriers are the most common reasons for not using PROMs in routine care. These barriers may be overcome by efforts or guideline changes from regulatory agencies, payors, or clinical guideline organizations. Future work will assess how physicians are using PROMs in treatment selection for their patients with cancer.

Patient and healthcare professional perspectives on implementing patient-reported outcome measures in gender-affirming care: a qualitative study

ObjectivesPatient and healthcare professional perspectives are needed to develop a gender-affirming care patient-reported outcome measure (PROM) implementation plan. We aimed to identify top considerations relevant to gender-affirming care PROM implementation...

Demonstrating the Value of Ambulatory Care Nursing Through Measurement of Nurse-Sensitive Clinical Quality Indicators in the 2023 Magnet® Application Manual.

The ANCC Magnet Recognition Program's® mission and vision is to continually elevate patient care and transform healthcare globally through an environment where nurses and the interprofessional team flourish. Reflecting the larger shifts in the healthcare delivery system from inpatient to ambulatory care settings, the Commission on Magnet® continues to emphasize the contributions of nurses in ambulatory care settings in the 2023 Magnet Application Manual®. This Magnet® Perspectives column will discuss the valuable role of ambulatory care nurses across the continuum of care and review new requirements in the 2023 Magnet Application Manual for measurement of nurse-sensitive outcomes in the ambulatory care setting using nationally benchmarked measures. In addition, potential sources of nationally benchmarked ambulatory data and selection of ambulatory care outcome measures will be discussed.

English validation of the Living with long term conditions scale

Abstract Background The English version of the living with long term conditions (LwLTCs) scale is a comprehensive person-centred measure that evaluates the complex process of living with long term conditions. Objectives To present the psychometric properties of the LwLTCs scale in an English-speaking population in people with different long term conditions. Methods An observational and cross-sectional study, with a convenience sample of 577 people living with osteoarthritis, diabetes mellitus type 2, chronic kidney disease, chronic obstructive pulmonary disease, chronic heart failure, and Parkinson's disease. Data collection was conducted between December 2021 and June 2022 across the United Kingdom via primary care surgeries and voluntary organisations. Psychometric properties including feasibility, internal consistency, confirmatory factor analysis, reproducibility, and content validity were tested. Results 44.7% were female, the age range was 37-97 years (98 ± 9.65), 71.1% were married and 76.4% were retired. Internal consistency was excellent for the total score (ordinal alpha =0.90) but confirmatory factor analysis showed that the fit of the 5-domain structure improved significantly if items 2, 5, 10, 16, 18 and 23 were removed and item 24 reallocated. Conclusions This is the first validation study of the LwLTCs scale in an English-speaking population living with different long term conditions. Having a reliable and valid healthcare and social care outcome measure is essential to identify comprehensive and complex needs of people living with long term conditions. A shorter version of the LwLTCs scale is recommended to facilitate the implementation of person-centred pathways and more comprehensive care plans and evaluation in the national healthcare system. Key messages • Innovative comprehensive scale to evaluate the daily living. • Reliable and valid health and social care outcome measure.

Achieving consensus on priority items for paediatric palliative care outcome measurement: Results from a modified Delphi survey, engagement with a children’s research involvement group and expert item generation

Background: There is no validated outcome measure for use in children’s palliative care outside sub-Saharan Africa. Stakeholders must be involved in the development of such measures to ensure face and content validity. Aim: To gain expert stakeholder consensus on items for inclusion in a paediatric palliative care outcome measure to establish face and content validity. Design: This study was conducted in two phases following Rothrock and COSMIN guidance on patient-reported outcome measure development. Phase 1: Three-round modified Delphi survey to establish consensus on priority items. Phase 2: Item generation meeting with key stakeholders to develop initial measure versions. A young person’s advisory group was also consulted on priority outcomes. Setting and participants: Delphi survey: Parents and professionals with experience of caring for a child with a life-limiting condition. Young person’s advisory group: young people age 10–20 years. Item generation meeting: bereaved parents, academics and clinicians. Results: Phase 1: Delphi survey (n = 82). Agreement increased from Kendall’s W = 0.17 to W = 0.61, indicating movement towards consensus. Agreement between professional and parent ranking was poor (Cohen’s kappa 0.13). Professionals prioritised physical symptoms, whereas parents prioritised psychosocial and practical concerns. Advisory group: Children (n = 22) prioritised items related to living a ‘normal life’ in addition to items prioritised by adult participants. Phase 2: Five age/developmental stage appropriate child and proxy-reported versions of C-POS, containing 13 items, were drafted. Conclusions: This study highlights the importance and feasibility of involving key stakeholders in PROM item generation, as important differences were found in the priority outcomes identified by children, parents and professionals.

Using "Real-World Data" to Study Cleft Lip/Palate Care: An Exploration of Speech Outcomes from a Multi-Center US Learning Health Network.

To assess the ability of a cleft-specific multi-site learning health network registry to describe variations in cleft outcomes by cleft phenotypes, ages, and treatment centers. Observed variations were assessed for coherence with prior study findings. Cross-sectional analysis of prospectively collected data from 2019-2022. Six cleft treatment centers collected data systematically during routine clinic appointments according to a standardized protocol. 714 English-speaking children and adolescents with non-syndromic cleft lip/palate. Routine multidisciplinary care and systematic outcomes measurement by cleft teams. Speech outcomes included articulatory accuracy measured by Percent Consonants Correct (PCC), velopharyngeal function measured by Velopharyngeal Competence (VPC) Rating Scale (VPC-R), intelligibility measured by caregiver-reported Intelligibility in Context Scale (ICS), and two CLEFT-Q™ surveys, in which patients rate their own speech function and level of speech distress. 12year-olds exhibited high median PCC scores (91-100%), high frequency of velopharyngeal competency (62.50-100%), and high median Speech Function (80-91) relative to younger peers parsed by phenotype. Patients with bilateral cleft lip, alveolus, and palate reported low PCC scores (51-91%) relative to peers at some ages and low frequency of velopharyngeal competency (26.67%) at 5 years. ICS scores ranged from 3.93-5.0 for all ages and phenotypes. Speech Function and Speech Distress were similar across phenotypes. This exploration of speech outcomes demonstrates the current ability of the cleft-specific registry to support cleft research efforts as a source of "real-world" data. Further work is focused on developing robust methodology for hypothesis-driven research and causal inference.

Scoping review of outcome measures in cleft care used in research and reports.

Treatment outcome measures are critical in the decision making of best practices in the OFC field. OFC consortium working groups provided standardization of outcome measures based on previous treatment outcome studies. However, the implementation of such standardization in OFC centres worldwide is unknown. This study presented mapped outcome measures in cleft care using a structured review method complemented by quantitative overview of the relevant published research to provide initial guidelines for the implementation of treatment outcome standardization. A scoping review of the literature of treatment outcomes in cleft care following Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews guidelines was performed. The selected indexed paper in outcome measures mapped following the international consortium in standard set of outcome measures in cleft care. Three hundred and sixty-five articles were filtered. The most discussed domains of cleft care were dental and oral health, appearance and speech/communication. Overall, the majority of publications were produced in high-income countries. The current review indicates that there are inequalities of treatment outcome studies among the domain of cleft care. In addition, there are also inequalities of published articles from HIC versus LMIC in treatment outcomes. This information can be used to develop targeted interventions aimed at encouraging cleft centres worldwide to adapt standardized outcome measures.

Clinical Integration of Digital Patient-Reported Outcome Measures in Primary Health Care for Chronic Disease Management: Protocol for a Systematic Review.

Health measurement guides policies and health care decisions are necessary to describe and attain the quintuple aim of improving patient experience, population health, care team well-being, health care costs, and equity. In the primary care setting, patient-reported outcome measurement allows outcome comparisons within and across settings and helps improve the clinical management of patients. However, these digital patient-reported outcome measures (PROMs) are still not adapted to the clinical context of primary health care, which is an indication of the complexity of integrating these tools in this context. We must then gather evidence of their impact on chronic disease management in primary health care and understand the characteristics of effective implementation. We will conduct a systematic review to identify and assess the impact of electronic PROMs (ePROMs) implementation in primary health care for chronic disease management. Our specific objectives are to (1) determine the impact of ePROMs in primary health care for chronic disease management and (2) compare and contrast characteristics of effective ePROMs' implementation strategies. We will conduct a systematic review of the literature in accordance with the guidelines of the Cochrane Methods Group and in compliance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines for its reporting. A specific search strategy was developed for relevant databases to identify studies. Two reviewers will independently apply the inclusion criteria using full texts and will extract the data. We will use a 2-phase sequential mixed methods synthesis design by conducting a qualitative synthesis first, and use its results to perform a quantitative synthesis. This study was initiated in June 2022 by assembling the research team and the knowledge transfer committee. The preliminary search strategy will be developed and completed in September 2022. The main search strategy, data collection, study selection, and application of inclusion criteria were completed between October and December 2022. Results from this review will help support implementation efforts to accelerate innovations and digital adoption for primary health care and will be relevant for improving clinical management of chronic diseases and health care services and policies. PROSPERO International Prospective Register of Systematic Reviews CRD42022333513; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=333513. DERR1-10.2196/48155.

Barriers and Best Practices for the Use of Patient-Reported Outcome Measures in Emergency Medicine.

Patient-reported outcome measures are commonly used in clinical trials and have been incorporated into routine clinical care in select specialties but have not been widely implemented in emergency medicine research and clinical care. We describe measurement-related barriers to patient-reported outcome measure use in the emergency department; administrative and practical considerations; implications of developing novel emergency medicine-specific patient-reported outcome measures; and key considerations for the use of patient-reported outcome measures in emergency medicine research and clinical care. Despite the unique barriers of the ED environment, potential solutions include the use of ED-validated patient-reported outcome measures when available; adapting existing short-form, multidimensional patient-reported outcome measures previously validated in diverse populations, ideally using computer-adapted testing; and collecting responses during anticipated wait times. With this work, we aim to inform barriers and best practices to the use of patient-reported outcome measures in emergency medicine research and clinical care to support future, more widespread implementation of patient-reported outcome measures within emergency care. The successful adoption of patient-reported outcome measures for diverse ED patient populations within the unique constraints of the acute care environment may help researchers, clinicians, and policymakers improve the quality and patient-centeredness of acute care.

Patient-reported outcome measurement in palliative care: A hermeneutic narrative review.

Recent years have witnessed the rise of patient-reported outcome measures (PROMs) in palliative care (PC), particularly those focused on the standardized measurement of symptom burden. These measures seek to evaluate the quality of PC through the quantification of various aspects of potential suffering (e.g., sleeplessness, loss of appetite, and pain). Further, drawing on patient experience, they provide a framework for evaluating the effectiveness of, and at times expanding, PC services. The aim of this paper is to provide a theoretically informed normative critique of PROMS-PC through a critical engagement with heterogeneous literatures. A hermeneutic narrative review underpinned by a view of "knowing" as an ongoing social accomplishment and inspired by complexity theory. This narrative review highlights some limitations to the development of PROMs, including the use of proxies to complete them, and how the outcomes may not always reflect either the character of PC or the key aspects of practice and experience therein. In their current form, PROMs have the potential to skew understandings of service quality, for example, by privileging one aspect of quality, that is, physical symptoms over other aspects of quality such as communication with care providers.

Conscientious use of patient-reported outcome measures in supportive care

PurposePatient-reported outcome measures (PRO) are critical tools to developing an understanding of cancer patients’ experience. This paper presents some of the lesser-understood implications of using patient-reported outcome measures in clinical research.MethodsThis study uses a combination of literature sources, real-world examples from supportive care studies, and statistical simulations to demonstrate the operating characteristics of patient-reported measures.ResultsIt is demonstrated that care must be taken in the analysis of PROs as the assumptions of the most common mean-based approaches are often violated including linearity, normally distributed errors, interference with asymptotic convergence via boundary values, and more. Further, the implications of subjective discretization are shown to reduce the apparent statistical power of PRO-based studies.ConclusionsPRO-based studies must be designed conscientiously as each PRO item will demonstrate a varying degree of subjectivity in a given population. Sample sizes of randomized studies using PROs must be inflated to account for this. Analyses should consider using ordinal statistical models until such time as the assumptions of mean-based models can be verified.

Development and Evaluation of Rehabilitation Service Areas for the United States

BackgroundGeographic areas have been developed for many healthcare sectors including acute and primary care. These areas aid in understanding health care supply, use, and outcomes. However, little attention has been given to developing similar geographic tools for understanding rehabilitation in post-acute care. The purpose of this study was to develop and characterize post-acute care Rehabilitation Service Areas (RSAs) in the United States (US) that reflect rehabilitation use by Medicare beneficiaries.MethodsA patient origin study was conducted to cluster beneficiary ZIP (Zone Improvement Plan) code tabulation areas (ZCTAs) with providers who service those areas using Ward’s clustering method. We used US national Medicare claims data for 2013 to 2015 for beneficiaries discharged from an acute care hospital to an inpatient rehabilitation facility (IRF), skilled nursing facility (SNF), long-term care hospital (LTCH), or home health agency (HHA). Medicare is a US health insurance program primarily for older adults. The study population included patient records across all diagnostic groups. We used IRF, SNF, LTCH and HHA services to create the RSAs. We used 2013 and 2014 data (n = 2,730,366) to develop the RSAs and 2015 data (n = 1,118,936) to evaluate stability. We described the RSAs by provider type availability, population, and traveling patterns among beneficiaries.ResultsThe method resulted in 1,711 discrete RSAs. 38.7% of these RSAs had IRFs, 16.1% had LTCHs, and 99.7% had SNFs. The number of RSAs varied across states; some had fewer than 10 while others had greater than 70. Overall, 21.9% of beneficiaries traveled from the RSA where they resided to another RSA for care.ConclusionsRehabilitation Service Areas are a new tool for the measurement and understanding of post-acute care utilization, resources, quality, and outcomes. These areas provide policy makers, researchers, and administrators with small-area boundaries to assess access, supply, demand, and understanding of financing to improve practice and policy for post-acute care in the US.

Women’s experiences with using patient-reported outcome and experience measures in routine perinatal care in the Netherlands: a mixed-methods study

ObjectivesTo gain insight into the experiences of women with completing and discussing patient-reported outcome measures (PROM) and patient-reported experience measures (PREM), and tailoring their care based on their outcomes.DesignA mixed-methods...