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BackgroundThe Organisation for Economic Co-operation and Development (OECD) Patient-Reported Indicator Surveys (PaRIS) initiative aims to support countries in improving care for people living with chronic conditions by collecting information on how people experience the quality and performance of primary and (generalist) ambulatory care services. This paper presents the development of the conceptual framework that underpins the rationale for and the instrumentation of the PaRIS survey. METHODS: The guidance of an international expert taskforce and the OECD Health Care Quality Indicators framework (2015) provided initial specifications for the framework. Relevant conceptual models and frameworks were then identified from searches in bibliographic databases (Medline, EMBASE and the Health Management Information Consortium). A draft framework was developed through narrative review. The final version was codeveloped following the participation of an international Patient advisory Panel, an international Technical Advisory Community and online international workshops with patient representatives. RESULTS: 85 conceptual models and frameworks were identified through searches. The final framework maps relationships between the following domains (and subdomains): patient-reported outcomes (symptoms, functioning, self-reported health status, health-related quality of life); patient-reported experiences of care (access, comprehensiveness, continuity, coordination, patient safety, person centeredness, self-management support, trust, overall perceived quality of care); health and care capabilities; health behaviours (physical activity, diet, tobacco and alcohol consumption), sociodemographic characteristics and self-reported chronic conditions; delivery system characteristics (clinic, main healthcare professional); health system, policy and context. DISCUSSION: The PaRIS conceptual framework has been developed through a systematic, accountable and inclusive process. It serves as the basis for the development of the indicators and survey instruments as well as for the generation of specific hypotheses to guide the analysis and interpretation of the findings.
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BACKGROUND: Case-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. RESULTS: We 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. CONCLUSIONS: Our 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.
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Clínicos Gerais , Humanos , Risco Ajustado , Diferença Mínima Clinicamente Importante , Medidas de Resultados Relatados pelo Paciente , Atenção Primária à SaúdeRESUMO
Aim: Recently, a patient-reported experience measure (PREM) was developed in Slovenia to assess patients' experiences with outpatient specialist healthcare clinics. The aim of this study was to evaluate the psychometric properties (including factor structure, reliability, convergent validity, and response distribution) of the questionnaire. Methods: The sample consisted of 8,406 adult participants treated in 171 specialist clinics from different medical fields. Participants voluntarily and anonymously responded to either the paper or online survey. Results: Descriptive statistics show meaningful response patterns with a general tendency towards favourable assessments. The psychometric analyses of the scales evaluating doctor's and nurses' work, respectively, generally showed a good fit of the unidimensional factor model as well as the Rasch model, high factor loadings and very good to satisfactory reliability. The Rasch scaling showed that these scales were most informative for patients with relatively unfavourable experience ratings. Conclusions: The results are similar to those found in previous evaluations of PREMs in other countries. Given its good psychometric properties, the Slovenian PREM can be recommended for healthcare evaluations in Slovenia and as a model for the development of similar PREMs in other countries.
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BACKGROUND: The CaReQoL Asthma assesses the care-related quality of life outcomes of pulmonary rehabilitation retrospectively in patients with severe asthma. The questionnaire comprises five domains (physical functioning; social functioning; coping with asthma; knowledge about asthma; medication). AIM: To investigate construct and criterion validity of the CaReQoL Asthma, as well as its responsiveness and minimal important change (MIC), in comparison with other health measures (AQLQ, ACQ and FEV1). METHODS: Eighty three adults with severe refractory asthma filled out the CaReQoL Asthma at 6 and 12 months after a 12-week personalized multidisciplinary pulmonary rehabilitation program in a tertiary asthma centre, either in Switzerland or The Netherlands. Construct validity and responsiveness were assessed by testing pre-defined hypotheses about associations with changes in AQLQ, ACQ and FEV1 scores. Criterion validity and MIC was assessed using Global Perceived Effect (GPE). Factor analyses, Cronbach's alpha, Spearman's correlations, paired t-tests and Student-Newman-Keuls tests were performed. RESULTS: Cronbach's alphas of the questionnaire domains ranged from 0.82 to 0.95. Good construct validity and responsiveness were found; 84% of the assessed correlations confirm pre-defined hypotheses and reflect both weak and moderate to strong correlations. Good criterion validity was also identified, with CaReQol scores discriminating better than other health measures between levels of GPE at 6 months post-rehabilitation. The MIC for the total score was estimated at 0.84. CONCLUSION: These study results suggest that the CaReQoL Asthma is a valid and responsive instrument and shows to be a comprehensive and tailored questionnaire for evaluating and monitoring outcomes of pulmonary rehabilitation in patients with severe refractory asthma. In order to further substantiate the reliability and validity of the CaReQoL Asthma, as well as to monitor outcomes of pulmonary rehabilitation in patients with severe asthma, it is recommended to use the CaReQoL Asthma in addition to other disease specific instruments.
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Asma , Qualidade de Vida , Humanos , Adulto , Reprodutibilidade dos Testes , Estudos Retrospectivos , Psicometria , Asma/diagnóstico , Asma/tratamento farmacológico , Inquéritos e Questionários , Medidas de Resultados Relatados pelo PacienteRESUMO
INTRODUCTION: In view of growing populations with chronic conditions, many countries are redesigning their health systems. However, little information is available about how health systems perform from the perspective of people living with chronic conditions. The Organisation for Economic Co-operation and Development (OECD) Member States therefore mandated the OECD to initiate the International Survey of People Living with Chronic Conditions (PaRIS survey), which aims to provide insight in outcomes and experiences of care as reported by people living with chronic conditions. The PaRIS-SUR consortium has been tasked by the OECD to support the development and implementation of the survey. METHODS AND ANALYSIS: As primary care services play a pivotal role in the management of chronic conditions, the PaRIS survey will be implemented in the primary care setting. Data will be collected with a survey among users of primary care services aged 45 years or older, of whom many have chronic conditions. An additional survey is conducted among their primary care providers. The nested study design will allow analysis of the patient-reported data in relation to characteristics of and care provided by primary care providers within and across countries. In 2022, the survey will be tested in a Field Trial in participating countries. Data for cross-country comparison will be collected by the Main Survey in 2023. ETHICS AND DISSEMINATION: Informed consent will be obtained from primary care providers and service users. National Project Managers search ethical approval of the survey in their country, if required. Reporting by the OECD will focus on questions for international comparison. A secured information technology platform will be developed for participants and stakeholders in countries to receive feedback and answer their own questions. Findings will also be disseminated through an international OECD flagship report, conferences, scientific papers and policy briefs, to inform strategies to improve care for people living with chronic conditions throughout the world.
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Organização para a Cooperação e Desenvolvimento Econômico , Políticas , Doença Crônica , Humanos , Inquéritos e QuestionáriosRESUMO
PURPOSE: Several patient-reported experience measures (PREMs) were developed through the years. These questionnaires are frequently found to be inappropriate for people with lower literacy levels. This paper describes the development of patient experience questionnaires for hospital patients with a wide range of literacy levels, while enabling the potential for quality improvement. METHODS: Mixed methods were used to adapt Picker Institute patient experience questionnaires: selection of items and adaptation towards language level B1 (the language level of which patients can express their own opinion and describe experiences, events and expectations) by expert panels, usability tests with patients, analysis of psychometric properties and member checking. A theory-driven approach was followed for definitive enrolment of items, meaning that the items eligible for exclusion had been carefully reviewed by the expert team and representatives of a patient council before definitive exclusion. RESULTS: A pilot study was performed in an University Medical Centre in the Netherlands among in- and outpatients after discharge. Two provisional questionnaires of 22 items, designed by an expert panel, were reduced towards a final selection of 14-15 items. This led to two short-form questionnaires, called Patient Experience Monitor (PEM) Adult Inpatient and PEM Adult Outpatient. To illustrate, the results of the PEM Adult Outpatient questionnaire are presented. CONCLUSION: PEMs are short and valid questionnaires specifically developed to measure patient experiences of hospital patients with a wide range of literacy levels. Acceptance of the questionnaires for both lower and higher educated patients are confirmed by usability tests. The respondents of the pilot study represent both groups. The developed questionnaires should be seen as a dynamic entity and part of a continuous effort to evaluate and improve patient experiences. Future studies are needed to examine the usability of these new questionnaires for quality improvement.
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BACKGROUND: Information on health and health care is abundant on the internet. To make informed choices, patients need reliable and easy-to-understand information about quality and availability of care providers and treatment options. However, the reliability of such Web-based information is difficult to assess. OBJECTIVE: This study aimed to test Web-based information about diabetes and dementia and specifically a new presentation format of care routes to see if people are able to understand and use the information. METHODS: Overall, 38 cognitive interviews were held; 20 people viewed the information about diabetes and 18 viewed the dementia information. Participants were asked what they would want to know about either diabetes or dementia, what choices they would want to make concerning their preferred care provider and treatment, and what information they would like to find to make these choices. They were then asked to view the relevant pages and comment on them. The interview was focused on general information about the condition, the care route, and the quality information for choosing a hospital. The interviews were transcribed verbatim and then systematically coded and ordered into themes. RESULTS: The themes that were developed for both Web pages during the analysis were information needs, findability, usability, comprehension and readability, recognizability, care route, quality information, and usefulness. Information needs were found to be very diverse and dependent on the personal situation and condition of the participant. Several participants were unable to find specific items because they were not where they expected them to be. Most participants were positive about the layout, font, and color scheme of the test pages. However, options of clicking through to another website and indications where information can be expanded and collapsed could be made clearer. Participants generally found the information easy to understand but felt a need for a more detailed explanation of the medical terms. Recognition of the information played an important role: participants assessed whether the information they found matched their experiences. The term care route meant little to most of the participants, but the layout of the care route itself was found to be clear. Not many respondents spontaneously went to the quality information, and a number of participants had difficulty understanding it. Overall, the participants thought the information on the website was useful and helpful. CONCLUSIONS: The cognitive interviews gave numerous insights into how Web-based information is processed and understood. The care route offers a clear overview of the various stages as the condition progresses, but the name care route is not clear to everyone. We gained insight into differences between subgroups of people in terms of information needs, comprehension, and use of the information because the diversity within the group of participants was lower than expected.
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Demência/terapia , Diabetes Mellitus/terapia , Telemedicina/métodos , Adulto , Idoso , Idoso de 80 Anos ou mais , Comportamento de Escolha , Feminino , Humanos , Internet , Masculino , Pessoa de Meia-Idade , Pesquisa QualitativaRESUMO
BACKGROUND: The public primary healthcare system in Greece has not been fully developed and is delivered by urban and rural health centers, outpatient departments in public hospitals and the recently established first-contact and decentralized local primary care units. The aim of this study was to develop a valid and reliable measurement tool for conducting periodic user experience evaluation surveys in public Primary HealthCare facilities in Greece such as outpatient clinics of public hospitals and health centers. METHODS: A mixed methods approach was applied. In particular, the methodology of developing and validating the tools included three steps: (a) establishment of the theoretical background/literature review, (b) qualitative study: development of the tools items and establishment of the face validity and (c) quantitative study: pilot testing and establishment of the structural validity and estimation of the internal consistency of the tools. Two patient focus groups participated in qualitative study: one visiting health centres and the other visiting the outpatient clinics of public hospitals. Quantitative study included 733 Primary Health Care services' users/patients and was conducted during August-October 2017. Exploratory and confirmatory factor analysis was performed to check for structural validity of the tools, while Cronbach's alpha coefficients were estimated to check for reliability. RESULTS: Confirmatory factor analysis confirmed almost perfectly the presumed theoretical model and the following six factors were identified through the tools: (a) accessibility (three items, e.g. opening hours), (b) continuity and coordination of care (three items, e.g. doctor asks for medical history), (c) comprehensiveness of care (three items, e.g. doctor provides advices for healthy life), (d) quality of medical care (four items, e.g. sufficient examination time), (e) facility (four items, e.g. comfortable waiting room) and (f) quality of care provided by nurses and other health professionals (four items, e.g. polite nurses). CONCLUSIONS: We have developed reliable and valid tools to measure users' experiences in public Primary HealthCare facilities in Greece. These tools could be very useful in examining differences between different types of public Primary Health Care facilities and different populations.
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Continuidade da Assistência ao Paciente , Ambiente de Instituições de Saúde , Acessibilidade aos Serviços de Saúde , Satisfação do Paciente , Atenção Primária à Saúde , Relações Profissional-Família , Qualidade da Assistência à Saúde , Instituições de Assistência Ambulatorial , Análise Fatorial , Grécia , Hospitais Públicos , Humanos , Ambulatório Hospitalar , Projetos Piloto , Pesquisa Qualitativa , Reprodutibilidade dos Testes , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Patient reported outcomes (PROs) provide information on a patient's health status coming directly from the patient. Measuring PROs with patient reported outcome measures (PROMs) has gained wide interest in clinical practice for individual patient care, as well as in quality improvement, and for providing transparency of outcomes to stakeholders through public reporting. However, current knowledge of selecting and implementing PROMs for these purposes is scattered, and not readily available for clinicians and quality managers in healthcare organizations. The objective of this study is to develop a framework with tools to support the systematic selection, implementation and evaluation of PROs and PROMs in individual patient care, for quality improvement and public reporting. METHODS: We developed the framework in a national project in the Netherlands following a user-centered design. The development process of the framework contained five iterative components: (a) identification of existing tools, (b) identification of user requirements and designing steps for selection and implementation of PROs and PROMs, (c) discussing a prototype of the framework during a national workshop, (d) developing a web version, (e) pre-testing of the framework. A total of 40 users with different perspectives (clinicians, patient representatives, quality managers, purchasers, researchers) have been consulted. RESULTS: The final framework is presented as the PROM-cycle that consists of eight steps in four phases: (1) goal setting, (2) selecting PROs and PROMs, (3) developing and testing of quality indicator(s), (4) implementing and evaluating the PROM(s) and indicator(s). Users emphasized that the first step is the key element in which the why, for whom and setting of the PROM has to be defined. This information is decisive for the following steps. For each step the PROM-cycle provides guidance and tools, with instruments, checklists, methods, handbooks, and standards supporting the process. CONCLUSION: We developed a framework to support the selection and implementation of PROs and PROMs. Each step provides guidance and tools to support the process. The PROM-cycle and its tools are publicly available and can be used by clinicians, quality managers, patient representatives and other experts involved in using PROMS. Through periodic evaluation and updates, tools will be added for national and international use of the PROM-cycle.
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BACKGROUND: Accurate patient expectations are important to optimise treatment success, especially for complex conditions such as chronic pain. Communication may be the key to managing patient expectations. This study aimed to explore whether health care provider communication influences patient expectations and which communication aspects are most important. METHODS: We conducted secondary analyses on data that had been collected between September and November 2012. 2603 patients suffering from chronic pain were invited to complete a survey. RESULTS: Although 69.9% of patients achieved or surpassed their treatment goal, 30.2% of patients were unsatisfied. Even though overall health care provider communication and shared decision making were unrelated to patient expectations, several affective communication aspects were related. These aspects were attentive listening, taking enough time, building patient's trust in the physician's competence and giving patients the feeling that the physician is doing all he or she can (p's < 0.05). CONCLUSIONS: Even though treatment goals are not always explicitly discussed, patients still form expectations regarding treatment outcomes. Affective communication may be more important for managing patient expectations than sharing information. Building a good therapeutic relationship by showing affective communication may be important to increase the accuracy of patient expectations.
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Dor Crônica/terapia , Comunicação , Pessoal de Saúde , Relações Médico-Paciente , Adulto , Idoso , Dor Crônica/psicologia , Tomada de Decisões , Feminino , Pesquisa sobre Serviços de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Medidas de Resultados Relatados pelo Paciente , Satisfação do Paciente , Adulto JovemRESUMO
BACKGROUND: Many survey studies in health care adjust for demographic characteristics such as age, gender, educational attainment and general health when performing statistical analyses. Whether the effects of these demographic characteristics are consistent between patient groups remains to be determined. This is important as the rationale for adjustment is often that demographic sub-groups differ in their so-called 'response tendency'. This rationale may be less convincing if the effects of response tendencies vary across patient groups. The present paper examines whether the impact of these characteristics on patients' global rating of care varies across patient groups. METHODS: Secondary analyses using multi-level regression models were performed on a dataset including 32 different patient groups and 145,578 observations. For each demographic variable, the 95% expected range of case-mix coefficients across patient groups is presented. In addition, we report whether the variance of coefficients for demographic variables across patient groups is significant. RESULTS: Overall, men, elderly, lower educated people and people in good health tend to give higher global ratings. However, these effects varied significantly across patient groups and included the possibility of no effect or an opposite effect in some patient groups. CONCLUSION: The response tendency attributed to demographic characteristics - such as older respondents being milder, or higher educated respondents being more critical - is not general or universal. As such, the mechanism linking demographic characteristics to survey results on patient experiences with quality of care is more complicated than a general response tendency. It is possible that the response tendency interacts with patient group, but it is also possible that other mechanisms are at play.
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Satisfação do Paciente/estatística & dados numéricos , Qualidade da Assistência à Saúde , Risco Ajustado , Adulto , Idoso , Grupos Diagnósticos Relacionados , Escolaridade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Análise de Regressão , Fatores Sexuais , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Patient-reported outcome measures (PROMs) are increasingly used in health care. To capture the patient's perspective, patient involvement in PROM development is needed. As earlier research showed varying degrees of patient involvement in PROM development, this study aimed to investigate why PROM developers do or do not involve patients, how patients can be successfully involved and what the negative aspects and benefits of patient involvement are. METHODS: PROM developers who, according to an earlier scoping review, involved patients in at least two phases of PROM development or did not involve patients at all, were contacted for a telephone interview. The interviews were recorded, transcribed and analysed using a general inductive approach. RESULTS: From the PROM developers who involved patients, 21 developers were interviewed and three answered questions via e-mail. Most developers considered patient involvement necessary to create a valid questionnaire and relied on guidelines, personal experience and practical considerations for choosing a qualitative method. Negative aspects of patient involvement were mainly time investment and budget impact. One developer who did not involve patients was interviewed. Two developers sent back answers via e-mail. These developers did not involve patients because of limited resources or because no benefits were expected. CONCLUSION: Although PROM developers agree that patient involvement is necessary, a lack of resources can be a stumbling block. Most developers rely on guidelines, personal experience or practical considerations for choosing a qualitative method. Although this may be a good place to start, to optimize patient involvement developers should explicitly think about which methods would suit their study.
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Participação do Paciente , Medidas de Resultados Relatados pelo Paciente , Desenvolvimento de Programas , Feminino , Humanos , Entrevistas como Assunto , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Dying in the preferred setting is an indicator of good palliative care quality. Most people prefer to die at home. But does the quality of care as perceived by their relatives vary depending on the care setting that is the place of death? The aim is to compare (from the relatives perspective) whether there are perceived differences in the quality of palliative care between the settings in which people die. METHODS: Multivariate linear regression analyses have been carried out using an existing dataset containing information collected using the relatives' version of the Consumer Quality Index (CQ-index) Palliative Care. The dataset includes 1368 relatives of patients with a wide variety of conditions who died in various locations: at home, in hospital, in residential care for the elderly, a hospice, palliative care unit or in another institution (e.g. institutions for people with intellectual disabilities or mental healthcare institutions). The relatives were the first contacts (family members or other people close to the patient) and they received the survey between 6 weeks and 6 months after the bereavement. RESULTS: Based on the raw data, differences between locations in terms of the perceived quality of care initially appeared inconsistent. The multivariate regression analyses however showed that relatives of people who died at home were generally the most positive about the palliative care that the patient and they themselves received when the patient was dying. The care provided by hospices also received a relatively good rating. In hospitals and in residential settings for care of the elderly, the care was rated less highly by the relatives. CONCLUSIONS: The quality of palliative care as experienced from the relatives' perspective is highest when the patient dies at home or in a hospice. This is an argument for letting people die at home, if they so wish, as far as possible and feasible.
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Família/psicologia , Cuidados Paliativos/normas , Percepção , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Modelos Lineares , Masculino , Pessoa de Meia-Idade , Psicometria/instrumentação , Psicometria/métodos , Qualidade da Assistência à Saúde/normas , Inquéritos e QuestionáriosRESUMO
BACKGROUND: The Care-Related Quality of Life survey for Chronic Heart Failure (CaReQoL CHF) is a newly developed patient-reported outcome measure (PROM) that measures care-related quality of life in patients diagnosed with chronic heart failure. This study describes the psychometric properties of the questionnaire and its relationship with disease severity and global rating of quality of care. METHOD: Insurance companies selected patients with a recorded diagnosis of chronic heart failure and for whom the hospital submitted a billing statement in the last year. Exploratory factor analysis, Cronbach's alpha and item-rest correlation were used to construct the CaReQoL CHF. Construct validity was assessed by examining the mean values of the CaReQoL CHF scales for the categories of the widely-used New York Heart Association (NYHA) functional classification and by correlating the global rating of quality of care with the CaReQoL CHF scales. RESULTS: One thousand eighteen patients with chronic heart failure filled out the CaReQoL CHF (RR: 35.7%). The CaReQoL CHF consists of 20 items and three scales: social and emotional problems, physical limitations, and being in safe hands. The mean scores of the three scales differed significantly for the NYHA categories, particularly for the social-emotional problems and physical limitation scales. The 'being in safe hands' scale showed a moderate positive correlation with the global rating of quality of care. CONCLUSIONS: The CaReQoL CHF is a concise and valid PROM that matches patients' priorities in healthcare. It adds a new element to existing quality of life questionnaires for patients with chronic heart failure, that is 'being in safe hands' scale. This scale is relevant for patients because they experience anxiety and tension about their condition. Future research should determine whether the CaReQoL CHF can help healthcare providers in daily practice to focus treatment on outcomes of care that are relevant to individual patients.
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Doença Crônica , Insuficiência Cardíaca , Qualidade de Vida , Inquéritos e Questionários/normas , Idoso , Idoso de 80 Anos ou mais , Análise Fatorial , Feminino , Insuficiência Cardíaca/terapia , Humanos , Masculino , Pessoa de Meia-Idade , New York , Avaliação de Resultados em Cuidados de Saúde , PsicometriaRESUMO
BACKGROUND: Patient-reported outcome measures (PROMs) are increasingly used to establish the value of health care. In order to reflect value, PROMs should measure outcomes that matter to patients. However, patients are not always involved in the development of PROMs. This study therefore aimed to investigate whether PROMs, which were developed without patient involvement, are relevant to patients and whether the level of importance allocated towards aspects of these PROMs varies between patient groups. METHODS: All patients from 20 Dutch hospitals undergoing hip or knee surgery in 2014 were invited to a PROMs survey. Participants were asked to rate the importance of each of the items in the HOOS-Physical Function Short form or the KOOS-Physical Function Short form, the EQ-5D and the NRS pain. RESULTS: Most outcomes were considered important. However, 77.7% of hip surgery patients rated being able to run as unimportant. Being able to kneel (32.7%) or squat (39.6%) was not important to a considerable minority of knee surgery patients. Pain, especially during rest, was considered very important by both hip (68.2%) and knee (66.5%) surgery patients. Patients who were older, male, experienced overall bad health and psychological health considered many items from the PROMs less important than other patients. DISCUSSION: Patients differ in what they consider important. Health-care professionals should explore patients' preferences and discuss which treatment options best fit patients' preferences. Additionally, if PROMs are used in performance measurement, further research is needed to look at whether and how variation in patient preferences can be taken into account.
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Participação do Paciente , Medidas de Resultados Relatados pelo Paciente , Satisfação do Paciente , Qualidade de Vida/psicologia , Artroplastia de Quadril/psicologia , Artroplastia do Joelho/psicologia , Feminino , Humanos , Masculino , Dor/psicologia , Sistema de Registros , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Patient-reported outcome measures (PROMs) measure patients' perspectives on health outcomes and are increasingly used in health care. To capture the patient's perspective, it is essential that patients are involved in PROM development OBJECTIVE: This article reviews in what ways and to what extent patients are involved in PROM development and whether patient involvement has increased over time. SEARCH STRATEGY: Literature was searched in PubMed, EMBASE, MEDLINE and the Cochrane Methodology Register. INCLUSION CRITERIA: Studies were included if they described a new PROM development. DATA EXTRACTION: Basic information and information regarding patient involvement in development phases was recorded. MAIN RESULTS: A total of 189 studies, describing the development of 193 PROMs, were included. Most PROMs were meant for chronic disease patients (n = 59) and measured quality of life (n = 28). In 25.9% of the PROM development studies, no patients were involved. Patients were mostly involved during item development (58.5%), closely followed by testing for comprehensibility (50.8%), while patient involvement in determining which outcome to measure was minimal (10.9%). Some patient involvement took place in the development of most PROMs, but in only 6.7% patients were involved in all aspects of the development. Patient involvement did not increase with time. CONCLUSIONS: Although patient involvement in PROM development is essential to develop valid patient-centred PROMs, patients are not always involved. When patients are involved, their level of involvement varies considerably. These variations suggest that further attention to building and/or disseminating consensus on requirements for patient involvement in PROM development is necessary.
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Participação do Paciente/métodos , Medidas de Resultados Relatados pelo Paciente , Doença Crônica , Humanos , Participação do Paciente/estatística & dados numéricos , Qualidade de Vida , Inquéritos e QuestionáriosRESUMO
OBJECTIVE: To examine the added value of measuring and possibly presenting patient experiences at the department level, in addition to the hospital level, and to explore the possibility that patient experiences differ according to the 'type' of hospital department. DESIGN: Secondary analysis of data from a widely used survey on patient experiences of Dutch inpatient hospital care [Consumer Quality Index (CQI) Inpatient Hospital Care]. SETTING: Inpatient hospital care experience survey of patients of 78 Dutch hospitals. PARTICIPANTS: A total of 15 171 randomly selected inpatients from 78 Dutch hospitals, who had at least one night of hospitalization between October 2006 and October 2007. MAIN OUTCOME MEASURES: Explained variance in patient experiences at the department level, compared with the explained variance at the hospital level. Significant differences in patient experiences between types of departments, expressed in regression coefficients. Patient experiences were measured using validated quality indicators, calculated from specific survey items. RESULTS: Adding the department level to the analyses of patient experiences is statistically worthwhile for a number of quality indicators of the CQI Inpatient Hospital Care, and will enable the presentation of more detailed results within hospitals. Furthermore, the results indicated that there are some systematic differences in patient experiences between specific types of hospital departments across hospitals. However, the proportion of variance in experiences explained by both department and hospital is limited (max. 14%). CONCLUSIONS: Analyses of quality information on patient experiences of inpatient hospital care should not only take the hospital level, but also at the more specific department level into account.
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Administração Hospitalar/normas , Pacientes Internados , Satisfação do Paciente/estatística & dados numéricos , Indicadores de Qualidade em Assistência à Saúde/estatística & dados numéricos , Adolescente , Adulto , Idoso , Feminino , Departamentos Hospitalares/normas , Humanos , Masculino , Pessoa de Meia-Idade , Países Baixos , Avaliação de Resultados em Cuidados de Saúde , Qualidade da Assistência à Saúde , Adulto JovemRESUMO
BACKGROUND: In the search for more straightforward ways of summarizing patient experiences and satisfaction, there is growing interest in the Net Promoter Score (NPS): How likely is it that you would recommend our company to a friend or colleague? OBJECTIVE: To assess what the NPS adds to patient experience surveys. The NPS was tested against three other constructs already used in current surveys to summarize patient experiences and satisfaction: global ratings, recommendation questions and overall scores calculated from patient experiences. To establish whether the NPS is a valid measure for summarizing patient experiences, its association with these experiences should be assessed. METHODS: Associations between the NPS and the three other constructs were assessed and their distributions were compared. Also, the association between the NPS and patient experiences was assessed. Data were used from patient surveys of inpatient hospital care (N = 6018) and outpatient hospital care (N = 10 902) in six Dutch hospitals. RESULTS: Analyses showed that the NPS was moderately to strongly correlated with the other three constructs. However, their distributions proved distinctly different. Furthermore, the patient experiences from the surveys showed weaker associations with the NPS than with the global rating and the overall score. CONCLUSIONS: Because of the limited extent to which the NPS reflects the survey results, it seems less valid as a summary of patient experiences than a global rating, the existing recommendation question or an overall score calculated from patient experiences. In short, it is still unclear what the NPS specifically adds to patient experience surveys.
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Pesquisas sobre Atenção à Saúde , Satisfação do Paciente/estatística & dados numéricos , Qualidade da Assistência à Saúde , Adulto , Idoso , Feminino , Hospitais , Humanos , Masculino , Pessoa de Meia-Idade , Países BaixosRESUMO
BACKGROUND: Global ratings of healthcare by patients are a popular way of summarizing patients' experiences. Summary scores can be used for comparing healthcare provider performance and provider rankings. As an alternative, overall scores from actual patient experiences can be constructed as summary scores. This paper addresses the statistical and practical characteristics of overall scores as an alternative to a global rating in summarizing patient survey results. METHODS: Data from a 2010 patient experience survey for approximately 12,000 nursing home residents (7.5% of all Dutch nursing home residents at the time) from 464 nursing homes in the Netherlands (25% of the Dutch nursing homes) was used. Data was collected through specifically designed standardized interview surveys. The respondents' scores for 15 established quality indicators (or composites) for nursing home care were used to calculate overall scores for each nursing home, using four different strategies. The characteristics of the overall scores were compared against each other and with the respondents' global rating. RESULTS: The individual indicators showed stronger associations with each of the four overall strategies than with the global ratings. Furthermore, the dispersion of the overall scores across nursing homes was greater. Differences between overall scores appeared limited. CONCLUSIONS: Overall scores proved more valid than global ratings as a summary of the indicator scores, and also showed more pronounced differences between nursing homes. Because of the limited statistical differences between the strategies, and for practical reasons, a straightforward averaging of quality indicator scores may be preferred as an overall score.
Assuntos
Satisfação do Paciente , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Coleta de Dados , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Países Baixos , Casas de Saúde/normas , Satisfação do Paciente/estatística & dados numéricos , Qualidade da Assistência à Saúde/normas , Qualidade da Assistência à Saúde/estatística & dados numéricos , Adulto JovemRESUMO
BACKGROUND: Previous research showed inconsistent results regarding the relationship between the age of patients and preference statements regarding GP care. This study investigates whether elderly patients have different preference scores and ranking orders concerning 58 preference statements for GP care than younger patients. Moreover, this study examines whether patient characteristics and practice location may confound the relationship between age and the categorisation of a preference score as very important. METHODS: Data of the Consumer Quality Index GP Care were used, which were collected in 32 general practices in The Netherlands. The rank order and preference score were calculated for 58 preference statements for four age groups (0-30, 31-50, 51-74, 75 years and older). Using chi-square tests and logistic regression analyses, it was investigated whether a significant relationship between age and preference score was confounded by patient characteristics and practice location. RESULTS: Elderly patients did not have a significant different ranking order for the preference statements than the other three age groups (r = 0.0193; p = 0.41). However, in 53% of the statements significant differences were found in preference score between the four age groups. Elderly patients categorized significantly less preference statements as 'very important'. In most cases, the significant relationships were not confounded by gender, education, perceived health, the number of GP contacts and location of the GP practice. CONCLUSION: The preferences of elderly patients for GP care concern the same items as younger patients. However, their preferences are less strong, which cannot be ascribed to gender, education, perceived health, the number of GP contacts and practice location.