Aspects Of Patient Experience Research Articles

Which aspects of patient experience are the ‘moment of truth’ in the healthcare context: a multicentre cross-sectional study in China

ObjectiveThis study aimed to examine the differential magnitude of associations between specific dimensions of patient experience and overall patient satisfaction.DesignA descriptive, cross-sectional design was used to collect patient experience and...

Patients' Satisfaction with Remote Asthma Medical Follow-Up Before and During the COVID-19 Pandemic.

Background: The COVID-19 pandemic forced the change of health care services, favoring the use of remote consultations. Objective: To assess the differences in asthma medical follow-up before and during the COVID-19 pandemic and to evaluate patients' satisfaction regarding remote consultations. Methods: A cross-sectional, observational, web-based study, including 335 Portuguese patients with self-reported physician-diagnosed asthma, was conducted. The survey was available between February and May 2021 and included questions about patients' sociodemographic and clinical characteristics and follow-up (consultations' type and satisfaction in 2019 and 2020). Satisfaction was assessed using 10 statements on different aspects of patient experience (Likert scale 1-5), with a total score between 10 and 50. Results: The 335 patients included had a median [P25-P75] age of 27 [21-43] years and 75% had uncontrolled asthma. Overall, fewer participants had consultations during the pandemic compared to 2019 (161 vs. 185; p < 0.001). Most patients had ≥1 face-to-face consultation both in 2020 and 2019 (131 vs. 184; p < 0.001). In 2020, there was an increase in the proportion of participants reporting ≥1 remote (telephonic plus video) consultation (40% vs. 3%; p < 0.001). This increase was mainly attributed to the use of telephonic consultation (38% vs. video 3%, p < 0.001). Patients' satisfaction was similar in 2020 and 2019 for face-to-face consultations (44 [38-47] and 44 [39-48], p = 0.136). In 2020, satisfaction with remote consultations was slightly lower than with face-to-face (43 [37-46] vs. 44 [38-47], p < 0.001). Conclusions: Even though patients were slightly more satisfied with face-to-face consultations, remote consultations can be an alternative in follow-up services for patients with asthma in the near future.

Patient Experience of Interpersonal Processes of Care and Subsequent Utilization of Hormone Therapy for Non-Metastatic Breast Cancer

Abstract Purpose: We examined the association between patient experience of care and utilization of hormone therapy (HT) in the treatment of non-metastatic hormone-receptor positive (HR+) breast cancer. Methods: Patients newly diagnosed with non-metastatic breast cancer were recruited from 2006 to 2010 for a longitudinal multisite cohort study in New York, NY, Detroit, MI, and Northern California. Of 1,145 patients surveyed, 797 had HR+ tumors eligible for HT and all necessary data. We assessed patient experience 4 to 8 weeks after recruitment using 6 subscales of the Interpersonal Processes of Care (IPC) survey: compassion, discrimination, and hurriedness in communication, as well as concern elicitation, result explanation, and patient-centered decision-making. Subscales ranged from 1 to 5 where higher values indicated better experiences. HT for 5 years is standard care for HR+ breast cancer so utilization was defined as time from diagnosis to HT initiation and time from HT initiation to early discontinuation before 5 years as calculated from follow-up survey responses. We evaluated the relationship between patient experience and utilization using Cox proportional hazard models, controlling for education, income, insurance, marital status, social support, site of care, age at diagnosis, stage, grade, tumor size, Charlson comorbidity index, and chemotherapy. Results: Median age at diagnosis was 59 years (interquartile range 51–66) with the majority diagnosed at clinical stage 1 (54%) and with low or moderate grade disease (78%). Less hurried communication was associated with increased probability of HT initiation (Hazards Ratio (HR) 1.15; 95% Confidence Interval (CI) 1.03, 1.30; p = 0.018). Conversely, more patient-centered decision-making was associated with increased probability of early discontinuation (HR 1.29; CI, 1.03, 1.63; p = 0.028). All other associations were null. Conclusion: While unhurried communication was associated with initiation of hormone therapy, patient-centered decision-making was associated with early discontinuation. Different aspects of patient experience may have vastly different relationships with patient utilization of health services. Actionable assessments of patient experience may require measurement along multiple dimensions.

Clinical judgement, case complexity and symptom scores as predictors of outcome in depression: an exploratory analysis

BackgroundClinical guidelines for depression in adults recommend the use of outcome measures and stepped care models in routine care. Such measures are based on symptom severity, but response to treatment is likely to also be influenced by personal and contextual factors. This observational study of a routine clinical sample sought to examine the extent to which “symptom severity measures” and “complexity measures” assess different aspects of patient experience, and how they might relate to clinical outcomes, including disengagement from treatment.MethodsSubjects with symptoms of depression (with or without comorbid anxiety) were recruited from people referred to an established Primary Care Mental Health Team using a stepped care model. Each participant completed three baseline symptom measures (the Personal Health Questionnaire (PHQ), Generalised Anxiety Disorder questionnaire (GAD) and Clinical Outcomes in Routine Evaluation (CORE-10)), and two assessments of “case complexity” (the Minnesota-Edinburgh Complexity Assessment Measure (MECAM) and a local complexity assessment). Clinician perception of likely completion of treatment and patient recovery was also assessed. Outcome measures were drop out and clinical improvement on the PHQ.Results298 subjects were recruited to the study, of whom 258 had a sufficient dataset available for analysis. Data showed that the three measures of symptom severity used in this study (PHQ, GAD and CORE-10) seemed to be measuring distinct characteristics from those associated with the measures of case complexity (MECAM, previous and current problem count). Higher symptom severity scores were correlated with improved outcomes at the end of treatment, but there was no association between outcome and complexity measures. Clinicians could predict participant drop-out from care with some accuracy, but had no ability to predict outcome from treatment.ConclusionsThese results highlight the extent to which drop-out complicates recovery from depression with or without anxiety in real-world settings, and the need to consider other factors beyond symptom severity in planning care. The findings are discussed in relation to a growing body of literature investigating prognostic indicators in the context of models of collaborative care for depression.

Patient Satisfaction with CIMZIA® (Certolizumab Pegol) AutoClicks® in the UK

IntroductionThe CIMZIA® AutoClicks® pre-filled pen (CZP PFP) was developed to overcome barriers to self-injection, by improving self-injection confidence, reducing fear associated with needle use, and supporting patients with impaired dexterity. The purpose of this research was to gather feedback on injection experience and the usefulness of training materials.MethodsEligible patients with rheumatoid arthritis (RA), axial spondyloarthritis (axSpA) or psoriatic arthritis (PsA) were at least 18 years of age and initiated onto the CZP PFP. Routine self-injection training and support were provided by trained specialist nurses. Patient experience (pain and skin reactions, confidence, satisfaction, and ease of use) was evaluated at visits 1–3 using an amended version of the self-injection assessment questionnaire (SIAQ) v2.0. Nurse and patient feedback on the training materials, and nurse opinions on patient self-injection after self-injection at visit 1, were also collected.ResultsOf 355 patients invited to participate, 196 provided informed consent and 79 participated in all three visits. Patients generally found the CZP PFP easy to use, and self-confidence and satisfaction were high. From visit 1 to visit 3, there was a numerical trend towards improvement in all three aspects of patient experience, most notably in both confidence and satisfaction. After self-injection at visit 1, confidence around safe patient self-injection was higher among nurses than among patients. Meanwhile, “pain and skin reactions” remained low at all visits. Patients thought the training materials contained sufficient information and were easy to understand and useful.ConclusionAfter training, patients generally found the device easy to use and showed high confidence and satisfaction with self-injection. Some patients may have been competent (based on nurse opinion), but initially lacked self-confidence. Increasing self-injection experience, together with patient training and continued support, may have facilitated high patient confidence and satisfaction, thereby potentially overcoming some of the barriers to self-injection.Electronic Supplementary MaterialThe online version of this article (10.1007/s12325-020-01257-6) contains supplementary material, which is available to authorized users.

A Systematic Framework for Analyzing Patient-Generated Narrative Data: Protocol for a Content Analysis.

BackgroundPatient narrative data in online health care forums (communities) are receiving increasing attention from the scientific community for implementing patient-centered care. Natural language processing (NLP) methods are gaining more and more attention because of the enormous data volume. However, state-of-the-art NLP still cannot meet the need of high-resolution analysis of patients’ narratives. Manual qualitative analysis still plays a pivotal role in answering complicated research questions from analyzing patient narratives.ObjectiveThis study aimed to develop a systematic framework for qualitative analysis of patient-generated narratives in online health care forums.MethodsOur systematic framework consists of 4 phases: (1) data collection, (2) data preparation, (3) content analysis, and (4) interpretation of the results. Data collection and data preparation phases are constructed based on text mining methods for identifying appropriate online health forums for data collection, differentiating posts of patients from other stakeholders, protecting patients’ privacy, sampling, and choosing the unit of analysis. Content analysis phase is built on the framework method, which facilitates and accelerates the identification of patterns and themes by an interdisciplinary research team. In the end, the focus of interpretation of the results phase is to measure the data quality and interpret the findings regarding the dimensions and aspects of patients’ experiences and concerns in their original contexts.ResultsWe demonstrated the usability of the proposed systematic framework using 2 case studies: one on determining factors affecting patients’ attitudes toward antidepressants and another on identifying the disease management strategies in patient with diabetes facing financial difficulties. The framework provides a clear step-by-step process for systematic content analysis of patient narratives and produces high-quality structured results that can be used for describing patterns or regularities in patients’ experiences, generating and testing hypotheses, and identifying areas of improvement in the health care systems.ConclusionsThe systematic framework is a rigorous and standardized method for qualitative analysis of patient narratives. Findings obtained through such a process indicate authentic dimensions and aspects of patient experiences and shed light on patients’ concerns, needs, preferences, and values, which are the core of patient-centered care.International Registered Report Identifier (IRRID)RR1-10.2196/13914

What matters to people with chronic conditions when accessing care in Australian general practice? A qualitative study of patient, carer, and provider perspectives

BackgroundResearch underpinning the patient experience of people with chronic conditions in Australian general practice is not well developed. We aimed to ascertain the perspectives of key stakeholders on aspects of patient experience, more specifically with regards to accessing general practice in Australia.MethodsUsing a qualitative design, semi-structured interviews were conducted by telephone and face-to-face with people living with one or more chronic conditions, informal carers, and primary care providers between October 2016 and October 2017. Participants were recruited and selected from three demographically representative primary health networks across Sydney, Australia. Interview transcripts and researcher’s reflective fieldnotes were coded and analyzed for key themes of access. Analysis and interpretation of data were guided by Levesque’s model of access, a conceptual framework to evaluate access broadly and from corresponding patient- and provider-side dimensions.ResultsA total of 40 interviews were included in the analysis. Most participants had attended their general practices for 10 years or more and had regular primary care providers. People with chronic conditions reported access barriers predominantly in their ability to reach services, which were related to illness-related disabilities (limited mobility, chronic pain, fatigue, frailty) and limitations in the availability and accommodation of health services to address patient preferences (unavailability of after-hours services, lack of alternative modes of service delivery). While cost was not a major barrier, we found a lack of clarity in the factors that determined providers’ decisions to waive or reduce costs for some patients and not others.ConclusionsPeople managing chronic conditions with a long-term primary care provider experienced access barriers in general practice, particularly in their ability to physically reach care and to do so on a timely basis. This study has important policy and practice implications, as it highlights patients’ experiences of accessing care and possible areas for improvement to appropriately respond to these experiences. Themes identified may be useful in the design of a patient experience survey tool specific to this population. While it incorporates perspectives from patients, carers and providers, this study could be further strengthened by including perspectives from culturally and linguistically underrepresented patient groups and more carers.

Incentive schemes to increase dementia diagnoses in primary care in England: a retrospective cohort study of unintended consequences

The UK government introduced two financial incentive schemes for primary care to tackle underdiagnosis in dementia: the 3-year Directed Enhanced Service 18 (DES18) and the 6-month Dementia Identification Scheme (DIS). The schemes appear to have been effective in boosting dementia diagnosis rates, but their unintended effects are unknown. To identify and quantify unintended consequences associated with the DES18 and DIS schemes. A retrospective cohort quantitative study of 7079 English primary care practices. Potential unintended effects of financial incentive schemes, both positive and negative, were identified from a literature review. A practice-level dataset covering the period 2006/2007 to 2015/2016 was constructed. Difference-in-differences analysis was employed to test the effects of the incentive schemes on quality measures from the Quality and Outcomes Framework (QOF); and four measures of patient experience from the GP Patient Survey (GPPS): patient-centred care, access to care, continuity of care, and the doctor-patient relationship. The researchers controlled for effects of the contemporaneous hospital incentive scheme for dementia and for practice characteristics. National practice participation rates in DES18 and DIS were 98.5% and 76% respectively. Both schemes were associated not only with a positive impact on QOF quality outcomes, but also with negative impacts on some patient experience indicators. The primary care incentive schemes for dementia appear to have enhanced QOF performance for the dementia review, and have had beneficial spillover effects on QOF performance in other clinical areas. However, the schemes may have had negative impacts on several aspects of patient experience.

Patient experience and utility of genetic information: a cross-sectional study among patients tested for cancer susceptibility and thrombophilia

We evaluated whether genetic tests with evidence of clinical and personal utility (i.e. APC and BRCA1/2 tests) are associated with higher satisfaction and a more positive perception of care experience than those with undefined utility (i.e. tests for thrombophilia). A cross-sectional survey was performed through telephone interviews to patients tested for deleterious variants in APC or BRCA1/2 genes, or for inherited thrombophilia (FV Leiden and/or FIIG20210A) during a 5-year period (2008–2012). Three aspects of patient experience were assessed: effective communication through pre- and post-test genetic counselling; collaboration between caregivers on the management of patient care; and impact of genetic testing on quality of life. Overall 237 patients had telephone interviews. Multivariate logistic regression analyses showed that patients tested for APC or BRCA1/2 variants were more likely to be satisfied with both pre- and post-test counselling than those tested for inherited thrombophilia (APC vs. thrombophilia, p = 0.039 and 0.005; BRCA1/2 vs. thrombophilia, p = 0.030 and <0.001). Patients tested for APC were more likely to report an improvement in quality of life than those for thrombophilia (OR = 2.97, 95%CI 1.14, 7.72; p = 0.025). A positive association was observed between patients who underwent BRCA1/2 testing, and self-perceived improvement in quality of life (OR = 1.41, 95%CI 0.74, 2.69; p = 0.294). Tests of undefined clinical and personal utility are associated with a lower degree of patient satisfaction with genetic counselling and no clear opinions on changes in quality of life compared with those with well-defined utility.

To what extent does patient experience account for variation in patient satisfaction with a healthcare system?

Background: Patient experience and patient satisfaction, the two recognized indicators for assessing the quality of healthcare, are related, but distinct concepts. While there is existing evidence concerning a statistically significant association between these two concepts, research on the extent to which patient experience accounts for variation in patients’ overall satisfaction with health services has produced contradictory results. Objectives: The primary aim of this paper was to determine the extent to which satisfaction with a healthcare system is explained by patient experience. A secondary objective was to identify the aspects of patient experience that relate most strongly to satisfaction with health services.Methods: The study was a secondary analysis of quantitative data from the 2006 Consumer Assessment of Healthcare Providers and Systems (CAHPS) Survey. Multivariate regression analysis was used to assess the association between global satisfaction and CAHPS domains of patient-reported experience with healthcare. Pearson product moment correlation coefficients were computed to ascertain the aspects of patients’ experiences that have strong association with their overall satisfaction. Findings: Much (67.4%) of the variation in overall patient satisfaction was accounted for by patient experience. Factors related to patient-professional relationship related strongly with patients’ overall satisfaction with health servicesConclusion: Patient experience of care is a major determinant of patients’ overall satisfaction with a healthcare system and the two concepts are not marginally related.

Survey Instruments to Assess Patient Experiences With Access and Coordination Across Health Care Settings: Available and Needed Measures.

Improving access can increase the providers a patient sees, and cause coordination challenges. For initiatives that increase care across health care settings, measuring patient experiences with access and care coordination will be crucial. Map existing survey measures of patient experiences with access and care coordination expected to be relevant to patients accessing care across settings. Preliminarily examine whether aspects of access and care coordination important to patients are represented by existing measures. Structured literature review of domains and existing survey measures related to access and care coordination across settings. Survey measures, and preliminary themes from semistructured interviews of 10 patients offered VA-purchased Community Care, were mapped to identified domains. We identified 31 existing survey instruments with 279 items representing 6 access and 5 care coordination domains relevant to cross-system care. Domains frequently assessed by existing measures included follow-up coordination, primary care access, cross-setting coordination, and continuity. Preliminary issues identified in interviews, but not commonly assessed by existing measures included: (1) acceptability of distance to care site given patient's clinical situation; (2) burden on patients to access and coordinate care and billing; (3) provider familiarity with Veteran culture and VA processes. Existing survey instruments assess many aspects of patient experiences with access and care coordination in cross-system care. Systems assessing cross-system care should consider whether patient surveys accurately reflect the level of patients' concerns with burden to access and coordinate care, and adequately reflect the impact of clinical severity and cultural familiarity on patient preferences.

Key drivers of patient experience in ambulatory paediatric cardiology.

Patient experience is becoming a central focus of healthcare. A broad range of studies on how to increase patient satisfaction ratings exists; however, they lack the specificity to adequately guide physicians and hospitals on how to improve patient experience. The objective of this study was to define the aspects of patient experience within paediatric cardiologist practices that can serve as predictors of excellent patient satisfaction. From 1 January, 2013 to 28 February, 2015 (26 months), outpatients who visited paediatric cardiologists were asked to complete a 39-question patient satisfaction survey regarding their experience. Surveys were collected over a 26-month period by Press Ganey, an independent provider of patient satisfaction surveys. Participants were asked to rate their experience on a 1-5 Likert-scale: a score of 1 demonstrated a "poor" experience, whereas a score of 5 demonstrated a "very good" experience. This retrospective study of 2468 responses determined that cheerfulness of the practice (r=0.85, p<0.001), a cohesive staff (r=0.83, p<0.001), and a care provider explaining problems and conditions (r=0.81, p<0.001) were key aspects of a paediatric cardiologist's practice that can be used as predictors of overall patient satisfaction. Awareness of how doctors can personalise a patient's experience is vital to achieve greater patient satisfaction and, ultimately, better patient outcomes.

Patient Satisfaction in Croatian Nationwide Mammography Screening Program

Mammographic screening programs are essential in timely detection and effective treatment of breast cancer. Since 2006, Croatia implemented a national MSP which asks for a regular biannual mammography for all women 50 - 69 years of age. First-visit screening attendance in the country is estimated at 58.3% with the trend of gradually decreasing re-attendance rates. Since patient satisfaction with the screening procedure may influence subsequent adherence, this study aimed to assess patient satisfaction in order to predict and improve patient re-attendance rate, a first-time effort of such kind in Croatia. 201 random patients undergoing mammography screening procedure at four facilities in Croatia were asked to complete an anonymous questionnaire which specifically evaluated the following aspects of patient experience: patient attitude, facility surroundings, staff attitude and pre-examination information transfer, associated physical pain, psychological discomfort, and finally overall patient impressions and satisfaction. The majority of our examinees expressed high satisfaction with MSP and an intention to re-screen; patient attitude, facility environment and staff attitude were deemed overly positive, whereas the majority of patients estimated the physical and psychological pain associated tolerable. These results suggest that patient satisfaction is not a critical factor influencing future adherence rate in MSP, and other components of the program should be evaluated and improved.

Using patient experiences as an outcome of integrated care. How to measure it?

Introduction: When is integrated care successful? Many studies have focused on clinicians’ perspective whether initiatives to sustain integrated care are successfully implemented and whether the initiatives have an effect. One of the primary aims in integrated care is to deliver a person-focused and population-based care. The foremost to assess whether integrated care initiatives enhance clinical integration, are the patients themselves. The Region of Southern Denmark has initiated a project focusing on the patient perspective, so that clinical integration is based on both patient and clinical perspective on the micro level. Moreover, the project deliver important knowledge to both the meso level and the macro level enhancing normative integration. In this project, clinical integration is composed by health care being hospital admissions and outpatient treatments, and social care being home care and rehabilitation.The purpose of this project is to identify how patients conceptualize clinical integration and how this resembles key features for clinical integration identified by clinicians. Further, we want to develop a patient questionnaire measuring their experience of clinical integration.Method: We performed a qualitative literature review to identify articles and reports concerning patient experiences in clinical pathways entailing clinical integration in-between health care and social care. Based on the literature we developed a semi-structured interview guide and conducted 12 patient interviews. Inclusion criteria for respondents were, ≥ 18 years, able to read and speak Danish, and having experienced a clinical pathway that included services from both health and social care. The study population include patients being admitted to hospital acute or scheduled, patients in outpatient clinical pathways, and patients with chronic and transitory conditions.Data from the semi-structured interviews will be analyzed using grounded theory identifying themes that are important to patients in inter-sectorial clinical pathways. The identified themes will be compared to themes identified in the literature and the three subscales of the Nijmegen Continuity Questionnaire (NCQ)(2).Based on the comparison of themes, we will develop a questionnaire and do a pilot test.Progress report: We searched the literature for articles and reports surveys measuring different aspects of patient experiences on clinical integration. Several questionnaires measured patient experiences on selected themes such as hospital care coordination, patient education, or for selected patient groups. We found a number of reports describing qualitative studies of patient experiences in clinical integration in-between health care, social care and primary care. These reports provided the background for the interview guide together with the NCQ. We choose the NCQ as inspiration for the development of the survey because it had elements general to all patients in inter-sectorial clinical pathways. The NCQ is translated from Dutch to Danish in a forward-backward procedure(3).Patients for the qualitative semi-structured interviews were recruited from hospital departments specialized in orthopaedic surgery, neurology, cardiology, general medicine, and pulmonary medicine. From social care, we recruited patients with clinical pathways related to diabetes and oncology.Discussion: It is challenging to identify themes that are sensitive to changes in clinical integration involving health care and social care. In other surveys of patient experiences, the quantitative data often provide a picture of general high patient satisfaction. We will try to take into account that some item must be very specific to be able to detect differences. In future assessment it would be beneficial to use both quantitative and qualitative data of patient experiences.There is a risk of selection bias in the population that we wish to interview. However, in the selection process, we tried to included a population that reflects the general population with regard to age, socio-economic level and gender. However, the interviewed patients are in general older and do have comorbidity.The data analysis is ongoing and results will be presented at the conference.

The effect of living alone on the costs and benefits of surgery amongst older people

Older people who live alone are a growing, high-cost group for health and social services. The literature on how living alone affects health and the costs and benefits of healthcare has focused on crude measures of health and utilisation and gives little consideration to other cost determinants and aspects of patient experience. We study the effect of living alone at each stage along an entire treatment pathway using a large dataset which provides information on pre-treatment experience, treatment benefits and costs of surgery for 105,843 patients receiving elective hip and knee replacements in England in 2009 and 2010. We find that patients who live alone are healthier prior to treatment and experience the same gains from treatment. However, living alone is associated with a 9.2% longer length of in-hospital stay and increased probabilities of readmission and discharge to expensive destinations. These increase the costs per patient by £179.88 (3.12%) and amount to an additional £4.9 million per annum. A lack of post-discharge support for those living alone is likely to be a key driver of these additional costs.

Methods for selecting health concepts and domains from in-depth qualitative interviews for the development of patient reported outcome measures (PROMS): a case study

One fundamental step in PROM development is adequacy of item generation based on the conceptual framework of the instrument. When this framework is novel and not obvious, the US Federal Drug Administration (FDA) guidance for industry recommends cognitive patient interviews be undertaken to ensure understanding and completeness of the health domains contained in the questionnaire items. Documentation of the process by which items and domains are identified (often from patient interviews) is recommended; however, transparent methods are lacking. We propose novel and transparent methods for selecting PROM domains developed in a feasibility case study. Inductive interviews were conducted with purposefully selected patients with experience of the clinical condition/intervention. An open-ended topic guide encouraged narratives of patients' experiences. Interviews were independently conducted and thematically analysed using the same electronic software package by two researchers, with an intention to code all aspects of patient experience. Codes were listed with supporting raw data (quotes), and discussed with a third independent researcher to agree an initial set of concepts (X identical codes, Y overlapping and Z new concepts only identified by one researcher). Further interviews tested the relevance and exhaustiveness of domains, with amendments noted and discussed. A final set of domains was incorporated into an initial PROM, supplemented with domains extracted from the literature and further patient interviews to establish face validity. This is a transparent process and method for documenting PROM concept and domain selection from qualitative interviews through to questionnaire items. Reporting standards for this process are needed.

Understanding and improving patient experience: A national survey of training courses provided by higher education providers and healthcare organizations in England

Understanding and improving 'patient experience' is essential to delivering high quality healthcare. However, little is known about the provision of education and training to healthcare staff in this increasingly important area. This study aims to ascertain the extent and nature of such provision in England and to identify how it might be developed in the future. An on-line survey was designed to explore training provision relating to patient experiences. To ensure that respondents thought about patient experience in the same way we defined patient experience training as that which aims to teach staff: 'How to measure or monitor the experience, preferences and priorities of patients and use that knowledge to improve their experience'. Survey questions (n=15) were devised to cover nine consistently reported key aspects of patient experience; identified from the research literature and recommendations put forward by professional bodies. The survey was administered to (i) all 180 providers of Higher Education (HE) to student/qualified doctors, nurses and allied health professionals, and (ii) all 390 National Health Service (NHS) trusts in England. In addition, we added a single question to the NHS 2010 Staff Survey (n=306,000) relating to the training staff had received to deliver a good patient experience. Two hundred and sixty-five individuals responded to the on-line survey representing a total of 159 different organizations from the HE and healthcare sectors. Respondents most commonly identified 'relationships' as an 'essential' aspect of patient experience education and training. The biggest perceived gaps in current provision related to the 'physical' and 'measurement' aspects of our conceptualization of patient experience. Of the 148,657 staff who responded to the Staff Survey 41% said they had not received patient experience training and 22% said it was not applicable to them. While some relevant education courses are in place in England, the results suggest that specific training with regard to the physical needs and comfort of patients, and how patient experiences can be measured and used to improve services, should be introduced. Future developments should also focus, firstly, on involving a wider range of patients in planning and delivering courses and, secondly, evaluating whether courses impact on the attitudes and behaviors of different professional groups and might therefore contribute to improved patient experiences.

Using patients’ experiences to identify priorities for quality improvement in breast cancer care: patient narratives, surveys or both?

BackgroundPatients’ experiences have become central to assessing the performance of healthcare systems worldwide and are increasingly being used to inform quality improvement processes. This paper explores the relative value of surveys and detailed patient narratives in identifying priorities for improving breast cancer services as part of a quality improvement process.MethodsOne dataset was collected using a narrative interview approach, (n = 13) and the other using a postal survey (n = 82). Datasets were analyzed separately and then compared to determine whether similar priorities for improving patient experiences were identified.ResultsThere were both similarities and differences in the improvement priorities arising from each approach. Day surgery was specifically identified as a priority in the narrative dataset but included in the survey recommendations only as part of a broader priority around improving inpatient experience. Both datasets identified appointment systems, patients spending enough time with staff, information about treatment and side effects and more information at the end of treatment as priorities. The specific priorities identified by the narrative interviews commonly related to ‘relational’ aspects of patient experience. Those identified by the survey typically related to more ‘functional’ aspects and were not always sufficiently detailed to identify specific improvement actions.ConclusionsOur analysis suggests that whilst local survey data may act as a screening tool to identify potential problems within the breast cancer service, they do not always provide sufficient detail of what to do to improve that service. These findings may have wider applicability in other services. We recommend using an initial preliminary survey, with better use of survey open comments, followed by an in-depth qualitative analysis to help deliver improvements to relational and functional aspects of patient experience.

Exploring online support spaces: Using cluster analysis to examine breast cancer, diabetes and fibromyalgia support groups

ObjectiveThis study sought to characterize and compare online discussion forums for three conditions: breast cancer, type 1 diabetes and fibromyalgia. Though there has been considerable work examining online support groups, few studies have considered differences in discussion content between health conditions. In addition, in contrast to the extant literature, this study sought to employ a semi-automated approach to examine health-related online communities. MethodsOnline discussion content for the three conditions was compiled, pre-processed, and clustered at the thread level using the bisecting k-means algorithm. ResultsThough the clusters for each condition differed, the clusters fell into a set of common categories: Generic, Support, Patient-Centered, Experiential Knowledge, Treatments/Procedures, Medications, and Condition Management. ConclusionThe cluster analyses facilitate an increased understanding of various aspects of patient experience, including significant emotional and temporal aspects of the illness experience. Practice implicationsThe clusters highlighted the changing nature of patients’ information needs. Information provided to patients should be tailored to address their needs at various points during their illness. In addition, cluster analysis may be integrated into online support groups or other types of online interventions to assist patients in finding information.

Patient experiences of rehabilitation in rheumatology: association with process and outcome

Objective: To evaluate health-care experiences of patients following inpatient rheumatology rehabilitation and to assess the association between these experiences and aspects of health-care delivery and patient characteristics.Methods: Data were collected from 435 patients with a rehabilitation stay of ≥ 1 week at 12 institutions in Norway in 2006. At discharge, patients completed the Rehabilitation Patient Experiences Questionnaire (Re-PEQ), which includes four important aspects of patient experiences. Multiple regression analysis was used to assess associations between Re-PEQ scores, health-care process, health and sociodemographic variables.Results: A total of 412 (94.7%) patients completed the Re-PEQ; scores ranged from 69 (social environment) to 83 (care/organization) on the 0–100 scale, where 100 represents the best possible experience. The social environment scale had the largest component of variation explained by the independent variables, which included number of doctor visits, amount of group education, and individual exercise (p < 0.01). The type of institution, number of doctor visits, mental health, and gender also explained significant components of variation in the other Re-PEQ scale scores.Conclusion: Patients reported good experiences with rheumatology rehabilitation. Areas where poorer experiences emerged can help target areas for future initiatives aimed at improving the quality of care. Health and sociodemographic variables should be controlled for in studies of patient experiences.