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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.

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.

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.

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. 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. 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. 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.

Introduction:International psychosocial support guidelines reflect consensus on support principles and interventions. However, no consensus exists on what recipients consider important elements of service delivery. Within two contexts – after a potentially traumatic event (PTE) and people with Spinal Muscular Atrophy (SMA)–the aims were to contribute to (1) understanding which psychosocial support aspects are considered important by recipients and relevant stakeholders; (2) developing instruments to test and integrate those aspects in practice, in order to evaluate the quality of psychosocial support from the recipient’s perspective.Method:Concept mapping was used to achieve consensus on key themes of psychosocial support. These were operationalized in surveys and pilot-tested, conforming to the Consumer Quality Index. This determines the importance and needs for improvement.Results:Concept mapping resulted in eight key themes within the PTE context and six in the SMA context. PTE survey (N= 132) results showed key themes “an approach that starts from the needs and capacities of the affected one” and “monitoring individuals affected and initiating follow-up where needed” were most important. Key theme “providing information on common emotional reactions” received the highest score of perceived need for improvement. SMA survey (N= 57) results showed key themes “an approach that incorporates all aspects of a human being” and “a respectful approach and awareness of personal boundaries” as most important. The perceived need for improvement of the key theme “availability and accessibility of quality information” was ranked the highest.Conclusion:The similarities between both contexts support the notion that there are universal aspects of psychosocial support. Simultaneously, the context-specific idiosyncrasies found underscore the necessity to adapt to context. The surveys have the potential to contribute to a growing toolbox of quality evaluation instruments.

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 FEV 1 ). 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 FEV 1 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.

Background Educational attainment is strongly related to specific health outcomes. The pathway in which individual patient-provider interactions contribute to (re)producing these inequalities has yet to be studied. In this article, the focus is on differences between less and more highly educated patients in their preferences for and experiences with patient-centred care., e.g. shared decision making, receiving understandable explanations and being able to ask questions. Methods Data are derived from several Consumer Quality-index (CQ-index) studies. The CQ-index is a family of standardized instruments which are used in the Netherlands to measure quality of care from the patient’s perspective. Results The educational level of patients is directly related to the degree of importance patients attribute to specific aspects of patient-centred care. It has a minor influence on the experienced level of shared decision making, but not on experiences regarding other aspects of patient-centred care. Conclusions All patients regard patient-centred care as important and report positive experiences. However, there is a discrepancy between patient preferences for patient-centred care on one hand and the care received on the other. Less educated patients might receive ‘too much’, and more highly educated patients ‘too little’ in the domains of communication, information and shared decision making.

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.

Background Comparisons of patient experiences between providers are increasingly used as an index of performance. The present study describes the ability of patient experience surveys to discriminate between healthcare providers for various patient groups and quality aspects, and reports the sample sizes required for reliable (comparisons of) provider scores. Method The consumer quality index is a family of surveys that are tailored to specific patient groups. Data was used from patients who underwent cataract surgery, patients who underwent hip or knee surgery, patients suffering from spinal disc herniation and patients suffering from varicose veins. Multi-level regression models were fitted to assess the proportion of variance in patient experiences that is attributable to providers for various quality aspects. Results The proportion of variance in patient experiences that is attributable to providers varied from 0.001 to 0.054. The required sample size for reliable estimates at the provider level varied from 41 to 1967 per provider. Differences in discriminative power between patient groups and/or quality aspects were inconsistent, with one exception: for all groups, the discriminative power of experiences regarding change in physical functioning was particularly limited. Conclusions From a statistical point of view, the discriminative power appears limited. The sample sizes required for reliable estimates are often substantial and deserve careful consideration when setting up measurements. Future research should evaluate the discriminative power by validating differences between providers in patient experiences with other indices and should explore other, more sensitive measures of patient experiences regarding treatment-related changes in physical functioning.

IntroductionIn 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 analysisAs 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 disseminationInformed 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.