Patient Experience In Order Research Articles

Weight-Bearing Magnetic Resonance Imaging as a Diagnostic Tool That Generates Biomechanical Changes in Spine Anatomy.

Weight-bearing magnetic resonance imaging (MRI) is a unique modality in diagnostic imaging that allows for the assessment of spinal pathology in ways considered previously inaccessible or insufficient with the conventional MRI technique. Due to limitations in positioning within the MRI machine itself, difficulties would be posed in determining the underlying cause of a patient’s pain or neurological symptoms, as the traditional supine position utilized can, in many cases, alleviate the severity of presented symptoms. Weight-bearing MRI addresses this concern by allowing a clinician to position a patient (to a certain degree) into flexion, extension, rotation, or side-bending with an axial load that can mimic physiologic conditions in order to replicate the conditions the patient experiences in order to give clinicians a clearer understanding of the anatomical relationship of the spine and surrounding tissues that may lead to a particular presentation of symptoms. These findings can then guide treatment approaches that are better tailored to a patient’s needs in order to initiate treatment earlier and shorten the duration of treatment necessary for patient benefit. The goal of this review is to describe and differentiate weight-bearing MRI from conventional MRI as well as examine the advantages and disadvantages of either imaging modality. This will include assessing cost-effectiveness and improvements in clinical outcomes. Further, the advancements of weight-bearing MRI will be discussed, including potentially unique clinical applications in development.

Prehabilitation before elective coronary artery bypass grafting surgery: a scoping review protocol.

The objective of this scoping review is to identify and map existing preoperative interventions, referred to as prehabilitation, in adult patients at home awaiting coronary bypass grafting (CABG) surgery. This scoping review also seeks to examine the feasibility and patient experiences in order to inform clinical practice and underpin a future systematic review. As patients age, comorbidities become more common. Strategies to improve postoperative outcomes and to accelerate recovery are required in patients undergoing CABG. Prehabilitation refers to a proactive process of increasing functional capacity before surgery to improve the patient's capacity to withstand upcoming physiologic stress and thus avoid postoperative complications. This scoping review will consider any studies including adult patients at home awaiting CABG surgery. Studies will provide information on any prehabilitation intervention to optimize preoperative physical and psychological health status. Studies conducted in any setting will be included. The methodology will follow the JBI recommendations for scoping reviews. Any published or unpublished source of information will be considered. Studies published in English, German, Danish, Swedish, and Norwegian will be included, with no geographical or cultural limitations. Retrieved papers will be screened by two independent reviewers, and a standardized tool will be used to extract data from each included source. The results will be presented as a map of the data extracted in a tabular form together with a narrative summary to provide a description of the existing evidence.

Recent Legislation that Secured a 'Right to Try' Unapproved Drugs: Why the 'Fuss' Over a 'Fix' of What 'Ain’t Broke'?

The significance of the federal Trickett Wendler, Frank Mongiello, Jordan McLinn, and Matthew Bellina Right to Try Act of 2017 and its state counterparts is widely misunderstood. The legislation is both more and less than it may seem at first blush. This much is clear: at the federal level, it opens a new pathway, alongside the existing FDA-regulated pathway, for making promising investigational drugs available to seriously ill patients who lack meaningful alternative treatment options (“treatment use”). This Article aims to elucidate the real import of these laws by examining them in the detailed historical context of how treatment use has been regulated before the laws’ advent, and how that regulation had repeatedly been challenged, unsuccessfully, in all three branches of government. The decades-long history of those prior challenges, all of which fundamentally targeted the FDA’s broad gatekeeping role in the modern drug regulatory paradigm, is excavated in considerable depth. Straddling this more-less dichotomy, this Article demonstrates on the one hand why the promise of the new legislation is less than proponents’ bold claims of being life-saving and transformative. To this end, this Article contrasts the new and extant pathways in light of decision factors that matter to mainstream drug developers. Their willingness to participate along any pathway is rate-limiting. Building on this view, this Article canvasses public reports through mid-2020 of actual “right to try” patient experience in order to substantiate the expectation that it would be scant, and unconvincing of broader uptake to come. On the more side of the dichotomy, this Article analyzes the broader ramifications of these bills, even beyond the potential to incentivize questionable fringe business models. In historical context, passage of the legislation is a celebrated “first” success in a long-running series of challenges to the FDA’s broad gatekeeping authority, in this specific context of treatment use. An undercurrent of aversion toward that authority has been persistent, and naturally flows to the sympathetic context of seriously ill patients. As a number of scholars and reporters have observed, proponents of “right to try” have a broader deregulatory agenda, and their ability to have achieved a first breakthrough in the treatment use context is the greater significance of the recent legislative campaign.

Moving Evidence: Patients’ Groups, Biomedical Research, and Affects

Research in science and technology studies has analyzed how patients’ groups engage in practices that connect biomedicine and patient experience in order to become involved in the shaping of biomedical research. However, there has been limited attention to the affective dimensions of such practices. Based on ethnographic fieldwork with a gynecological cancer patients’ group in Sweden, this article focuses on practices that aim to influence researchers and research institutions to prioritize biomedical gynecological cancer research. It analyzes how “affects” are woven through these practices and pays attention to the entanglements of affects, biomedical research, and lay experience they involve. The article explores the relation between the gynecological cancer patients’ group and biomedical research as a set of material-semiotic practices of “moving evidence.” These practices of moving evidence (1) enact gynecological cancer as under-researched; (2) collect and produce new “evidence”; (3) “mobilize” the evidence at public events, in interactions with biomedical researchers, and in different online settings; and (4) entangle affects with biomedical and experiential evidence to enact (a lack of) gynecological cancer biomedical research as a matter of concern.

The emotional labour of quality improvement work in end of life care: a qualitative study of Patient and Family Centred Care (PFCC) in England

BackgroundThere is a growing emphasis on understanding patient experience in order to inform efforts to support improvement. This paper reports findings from an implementation study of an evidence-based intervention called Patient and Family Centred Care (PFCC) designed to tap into patient experiences as a basis for improvement. In this study the PFCC intervention was spread to a new service area (end of life care) and delivered at scale in England. The findings presented here focus specifically on one key aspect of the intervention: staff shadowing of patients, and the experiences of staff carrying out shadowing for the purposes of service improvements.MethodsThe study methods were ethnographic observations of key events, semi-structured interviews with members of participating teams and the programme implementation support team and managers, and a review of the documents used in the set up and running of the programme.ResultsOne of the key strengths of the PFCC approach is to encourage staff through shadowing to engage with patient experience of services. Many staff described the process of shadowing as a transformative experience that alerted them to immediate areas where their services could be improved. However, engaging with patient experience of end of life care services also had unintended consequences for some staff in the form of emotional labour. Furthermore, we observed difficulties encountered by staff that are not accounted for in the existing PFCC literature relating to how care service structures may unevenly distribute the amount of ‘emotional labour’ that staff members need to invest in implementing the programme.ConclusionsConnecting with patient experience is a crucial aspect of a number of quality improvement interventions that aim to help staff to engage with the lived experience of their services and reconnect their motivations for working in the health care system. However, there may be unintended consequences for health care service staff, particularly in sensitive areas of service delivery such as end of life care. The ‘emotional labour’ for staff of engaging in quality improvement work informed by patient experience should be considered in planning and supporting patient experience led quality improvement.

Being recognised as a whole person: A qualitative study of inpatient experience in mental health

Few studies address the many challenges that are faced by staff and patients in the inpatient mental health context. In particular, there is a lack of research that explores first-hand patient experiences in order to establish what treatment practices best assist patient recovery and what are the barriers to these practices. This qualitative study, which utilises a user-involved research framework, collaborates with a co-researcher patient group throughout the study. Fourteen patients, all of whom had been in inpatient treatment for at least three weeks, were recruited to the study. Study participants were interviewed in-depth in the period September 2016 to March 2017. Data underwent a thematic analysis that was inspired by interpretative phenomenological analysis. A core theme of the findings was the importance of being recognised as a whole person, and the patient–professional relationship was regarded as a fundamental factor in fostering recovery, with two underlying themes: (i) a need to have one‘s self-identity recognised and supported, and (ii) an experience of ambivalence between needing closeness and distance. This study suggests ways nurses can give priority to interpersonal interactions and relationships with hospitalised patients over task-oriented duties, highlighting the need for nurses to balance patient competing needs for both closeness and distance.

What Are the Risk Factors of Negative Patient Experience? A Cross-Sectional Study in Chinese Public Hospitals.

Hospitals are struggling to involve patients and learn from their experience. The risk factor of patient experience is increasingly recognized as a critical component in improving patient experience. Our study explored risk factors of negative patient experience in order to improve the health-service quality of public hospitals. We conducted a cross-sectional study in Hubei province, China. A total of 583 respondents were surveyed by the Outpatient Experience Questionnaire with good validity and reliability in July 2015. T-tests were conducted to compare the experience scores among different outpatient groups. Multiple linear regression was performed to determine the significant factors that influenced the outpatient experience. Outpatients between 18 and 44 years old had the lowest experience scores (65.89 ± 0.79), whereas outpatients completely paying out-of-pocket had the lowest experience scores (64.68 ± 0.81) among all participants. Outpatients with poor self-rated health status had the lowest experience scores (66.14 ± 1.61) among different self-rated health status groups. While age, type of payment, and self-rated health status were significantly risk factors that influenced outpatient experience in the multiple linear regression. Thus, health-care providers should pay more attention to outpatients who are young (age <45), completely out-of-pocket and poor health status, and provide precision health care to improve outpatient experience.

Gut disruption impairs rehabilitation in patients curatively operated for pancreaticoduodenal cancer - a qualitative study

BackgroundHow patients recover and resume everyday life after curative hepato-pancreato-biliary (HPB) surgery with intestinal reconstruction has, to our knowledge, not previously been investigated. We wanted to explore the patient experience in order to develop our capability to support their rehabilitation and identify interventional gaps in the current post-surgical care of these patients. Therefore, the aim of the present study was to explore patients’ experiences of their gut, digestion, recovery and uptake of everyday life after HPB surgery with intestinal reconstruction.MethodsA qualitative explorative study with semi-structured interviews with 12 patients. We analysed data using qualitative content analysis with an inductive approach.ResultsTwo main themes with six sub-themes emerged from the analysis: 1. “Disrupted gut” covering the sub-themes: the weakened body; fighting cachexia; re-aligning to the altered body. 2. “Recovery work” with the sub-themes: the value of municipal rehabilitation programmes; reclaiming the sociality of meals; going back to work. The patients described overarching digestive changes, predominantly diarrhea and nausea. Diarrhea and nausea challenged rehabilitation efforts and limited patients’ participation in social activities. Patients toiled to regain strength and every-day life as it was before surgery. Current municipal rehabilitation programmes facilitated these efforts.ConclusionsThe patients articulated an overarching experience of gut disruption, predominantly presenting as nausea, diarrhea and difficulty eating. This challenged their recovery work and uptake of every-day life. Specialised follow-up at expert centres might mitigate the sequelae of gut disruption after HPB surgery. We suggest that follow-up programmes systematically monitor the experienced symptoms of gut disruption with HPB-specific PROMS. Furthermore, research into the pathophysiology of cachexia and novel interventions for reducing cachexia and weakness after curative HPB surgery is relevant.

The four Ps of patient experience: A new strategic framework informed by theory and practice

This article proposes a new strategic framework to assist healthcare organizations in achieving great patient experiences in the healthcare setting. We synthesize models of practice and literature relevant to the patient experience in order to propose the four Ps of patient experience. Key levers used in this model are: (a) trained autonomous physicians, (b) multidisciplinary partners, (c) alternative places of care delivery matched to patient conditions and needs, and (d) standardized yet flexible processes. Healthcare leaders will be able to use the proposed framework to develop detailed strategies toward improving patient satisfaction and experiences.

A Conceptual Model for Emergency Department Patient Experience.

Emergency department (ED) patient experience continues to be a growing area of focus for ED physicians, administrators, and regulatory agencies. Recent literature has suggested a strong correlation between positive ratings of patient experience and important health system goals, including improved clinical outcomes and care quality, increased staff satisfaction, and reduced medicolegal risk. However, given the myriad of factors driving ED patient experience, identifying effective and synergistic interventions can present a challenge, especially in the setting of limited ED resources. Utilizing the themes identified in a recent systematic review of the ED patient experience literature, we developed a conceptual “logic model” of ED patient experience in order to provide a broadly applicable framework for practical intervention and to guide further study of ED patient experience interventions. The logic model was modified in an iterative fashion through review by local patient and staff groups as well as a national interest group until arriving at the current, comprehensive version. Here, we describe the creation of the logic model and, with the aim of providing a framework for readers to develop similar models for their practice settings, provide a case discussion of its use by an ED medical director.

Abstract P6-12-05: Metastatic breast cancer collateral damage project (MBCCD): Development and preliminary results of the survey of health, impact, needs, and experiences (SHINE)

Abstract Rationale: People living with metastatic breast cancer face unique challenges, which have not been well characterized. The aim of the MBCCD was to characterize the MBC patient experience in order to identify and address potential areas of need in this underserved population. Method: We crowdsourced input and gathered free-text data from 353 people living with MBC to document the breadth of challenges affecting quality of life. From the responses, we developed a new measure (SHINE) with 79 patient-driven items regarding the experience of MBC, including verbatim statements from crowdsourcing data. Validated quality of life scales, clinical information, and demographic data were also collected. Participants were recruited from Dr. Susan Love Research Foundation's Army of Women® and other advocacy organizations; 515 completed the questionnaire. Confirmatory and exploratory factor analyses were conducted to assess model fit for SHINE and to identify subscales. Next, differences in MBC-specific concerns and experiences as a function of age, marital status, financial status, education, children, metastatic site location(s), and current medical treatment were examined with ANOVAs and t-tests. Results: Factor analyses indicated good model fit (CFI=.96, RMSEA=.05, SRMR=.04) for a 36-item scale of MBC-specific concerns and experiences with nine subscales: 1) Employment/achievement, 2) Finances, 3) Insurance, 4) Mortality/uncertainty, 5) Activity disruption, 6) Concern for others, 7) Social isolation/withdrawal, 8) Self-concept disruption, 9) Benefit finding. A within-subjects ANOVA revealed that participants were most bothered by mortality/uncertainty concerns, followed by activity disruption, financial, employment/achievement, and insurance concerns, respectively (F(4,508)=111.38, p&amp;lt;0.01). Additionally, participants endorsed strongest agreement with benefit finding, followed by concern for others, self-concept disruption, and social isolation/withdrawal (F(4,508)=101.53, p&amp;lt;.01). Participants younger than 50 years and those with lower financial status reported higher concerns on all subscales (ps&amp;lt;0.01), except for benefit finding (ps&amp;gt;0.18). Participants with a child under 18 living at home, those on combination therapies, and those with metastases to multiple sites or bone only reported higher concerns on several subscales (ps&amp;lt;0.05). Being married was significantly associated with higher concern for others and lower concern about finances (ps&amp;lt;0.02). Education was not significantly related to any subscale. Conclusions: Several important concerns and experiences related to MBC are not captured adequately in existing measures. This study developed a new measure (SHINE), which reliably assessed these disease-specific concerns and experiences in 515 adults living with MBC. Concerns regarding mortality and uncertainty were most prominent. Specific demographic and medical characteristics modified responses on eight subscales, but not on the benefit finding subscale. Findings can aid the development of supportive care efforts that address areas of need (e.g., concerns about mortality and uncertainty) in this understudied medical population. Citation Format: Stanton A, Williamson T, Clague DeHart J, Jorge A, Eshraghi L, Cooper Ortner H, Love S. Metastatic breast cancer collateral damage project (MBCCD): Development and preliminary results of the survey of health, impact, needs, and experiences (SHINE) [abstract]. In: Proceedings of the 2017 San Antonio Breast Cancer Symposium; 2017 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2018;78(4 Suppl):Abstract nr P6-12-05.

Challenges to Ethically Managing Parkinson Disease: An Interview Study of Patient Perspectives.

This study investigated the current ethical issues in relation to recognizing and managing Parkinson disease (PD) from the patient’s perspective.Methods:Twelve patients living with PD who were from the medical school’s Patients as Educators program were recruited. Semistructured interviews were conducted to record patient experiences in order to identify potential ethical issues in relation to recognizing and managing PD. Thematic analysis was applied to the interview transcripts.Results:Four key themes emerged from the interviews. These were information giving, coping, identity, and future medical treatment. These data indicate variable experiences in relation to communication between patient and health-care professional, better support for both planning end-of-life decisions and in coping with the disease’s impacts on their identity. Patients with PD also struggle with access to support services and support for main carer.Implications:To ensure ethical practice in supporting patients with PD, these emerging themes need further investigation; and management guidelines relevant to PD must be informed by research in this area to ensure ethical care of patients with PD, their carers, and families.

Pain and quality of life in leprosy patients in an endemic area of Northeast Brazil: a cross-sectional study.

BackgroundPain emerges as a challenge in the treatment of leprosy patients. In this study, we describe the prevalence and type of pain in patients with leprosy, and its effect on patients’ quality of life in an endemic area of Northeast Brazil.FindingsA cross-sectional survey of 260 patients attending leprosy reference centres in Sergipe, Northeast Brazil was conducted. Individuals were assessed for the presence and type of pain, skin sensory loss, peripheral nerve enlargement, touch and pinprick sensations, mechanical allodynia and nerve palpation. Participants completed the Douleur Neuropathique 4 questionnaire, and we also used the Brief Pain Inventory scale and the World Health Organization Quality of Life-BREF instrument to arrive at our results. One hundred and ninety-five (75 %) patients reported pain, mostly of the neuropathic type. Pain was moderate in 84 (43.1 %) and severe in 94 (48.2 %) participants. The presence of pain was associated with disability (p = 0.001), leprosy reactions (p = 0.004) and lower quality of life. Most patients with neuropathic pain were treated with steroids, despite their low efficacy for this type of pain.ConclusionPain is highly prevalent among leprosy patients and is associated with low quality of life. Leprosy management should include a systematic assessment of the type of pain a patient experiences in order to provide adequate treatment.Electronic supplementary materialThe online version of this article (doi:10.1186/s40249-016-0113-1) contains supplementary material, which is available to authorized users.

How nurses and their work environment affect patient experiences of the quality of care: a qualitative study.

BackgroundHealthcare organisations monitor patient experiences in order to evaluate and improve the quality of care. Because nurses spend a lot of time with patients, they have a major impact on patient experiences. To improve patient experiences of the quality of care, nurses need to know what factors within the nursing work environment are of influence. The main focus of this research was to comprehend the views of Dutch nurses on how their work and their work environment contribute to positive patient experiences.MethodsA descriptive qualitative research design was used to collect data. Four focus groups were conducted, one each with 6 or 7 registered nurses in mental health care, hospital care, home care and nursing home care. A total of 26 nurses were recruited through purposeful sampling. The interviews were audiotaped, transcribed and subjected to thematic analysis.ResultsThe nurses mentioned essential elements that they believe would improve patient experiences of the quality of nursing care: clinically competent nurses, collaborative working relationships, autonomous nursing practice, adequate staffing, control over nursing practice, managerial support and patient-centred culture. They also mentioned several inhibiting factors, such as cost-effectiveness policy and transparency goals for external accountability. Nurses feel pressured to increase productivity and report a high administrative workload. They stated that these factors will not improve patient experiences of the quality of nursing care.ConclusionsAccording to participants, a diverse range of elements affect patient experiences of the quality of nursing care. They believe that incorporating these elements into daily nursing practice would result in more positive patient experiences. However, nurses work in a healthcare context in which they have to reconcile cost-efficiency and accountability with their desire to provide nursing care that is based on patient needs and preferences, and they experience a conflict between these two approaches. Nurses must gain autonomy over their own practice in order to improve patient experiences.

Integrating Evidence-Based Practice into a Therapeutic Exercise Course: Real-Time Patient Experience

Athletic training students need real-time patient experiences in order to transfer the knowledge and skills learned in the classroom into clinical practice. The objective is to present a description of an assignment that could be incorporated into a therapeutic exercise course giving the student an opportunity to evaluate a patient, design a program utilizing evidence-based practice (EBP), and work with the patient in a 1-on-1 capacity over a period of time to implement the program. Students may not always have the opportunity in the clinical education environment to develop a rehabilitation program for a patient based on their own evaluation of the patient and utilize EBP concepts in the development of a program. This assignment involves utilizing patient evaluation techniques, including the use of a patient-rated outcome measures instrument, as well as the use of clinician-based measures, to develop a rehabilitation program. The program must be anchored in sound evidence and patient needs, incorporating multiple facets (eg, range of motion exercises, strengthening exercises) within the limitations of the injury/condition. Students report increased confidence in their ability to design a rehabilitation program, as well as their ability to utilize EBP in the clinical setting. They also develop problem-solving skills and cultivate professional attributes (communication skills, interpersonal skills) through this activity. In conclusion, this assignment is 1 way to infuse EBP concepts into a classroom assignment that requires real-time patient care experience over a period of time.

Intensive care delirium: the new black

Intensive care delirium: the new black

Understanding the context of patient experiences in order to explore adherence to secondary prevention guidelines after heart surgery

After coronary artery bypass surgery, many patients do not incorporate healthy behaviors into their postoperative lifestyle or enroll in cardiac rehabilitation, key aspects of secondary prevention. This qualitative study examined patients' post-coronary artery bypass surgery experiences to explore barriers in adhering to dietary and activity guidelines. We conducted semi-structured, in-depth interviews with 30 male patients from a military veteran's hospital, using emergent, thematic analysis to identify experiences that led to poor adherence. RESULTS were grouped according to barriers to diet, activities, and enrolling in cardiac rehabilitation. Overall, understandings of postoperative health, priorities that diverged from guidelines, and the context of household members and other health conditions impacted postoperative health behaviors. Many participants were familiar with secondary prevention guidelines. However, postoperative perceptions of health as well as the context of recovery influenced self-management. Providers must consider a patient's context when discussing secondary prevention. Venues such as cardiac rehabilitation may provide an opportunity to improve adherence to secondary prevention guidelines by expanding available class times, engaging patients' household members, or tailoring recommendations to also address other health conditions.

A simple approach to fairer hospital benchmarking using patient experience data

To determine the factors contributing most to variability in patient experience in order to present approaches for fairer benchmarking of hospitals and for quality improvement. Secondary analysis of data from a widely used survey on patient experience. Inpatients from all 24 acute hospitals in the Canton of Bern in Switzerland. Data collection followed the standardized and validated Picker Institute methodology for a period of 13 weeks in the fall/winter of 2005. Inpatients age 18 years and older (n = 14 089), discharged within the sampling period. 'Patient experience', measured by the total Picker Problem Score (PPS) and by six domain scores (care, communication, respect, cooperation, organization, discharge management). In regression analysis, the patient factors self-reported health, age and education explained the highest proportion of variability in the PPS (4.8, 2.2 and 0.7%, respectively). Multiple linear adjustment for factors associated with patients removed between 29 and 33% of variability between hospital categories. The domain score means varied from under 5% for 'respect towards the patient' to 34% for 'discharge management'. Ranking of hospitals by domain scores differed from the ranking based on the total PPS. Statistical adjustment for patient mix and additional stratification for some hospital factors make benchmarking using patient survey data fairer and more transparent. Use of our approach for presenting quality data may make interpretation easier for the different target groups and may enhance the relevance of such information for decision-making.

Patient activism and the struggle for diagnosis: Gulf War illnesses and other medically unexplained physical symptoms in the US

We examine Gulf War illnesses—which include the fatigue, joint pain, dermatitis, headaches, memory loss, blurred vision, diarrhea, and other symptoms reported by Gulf War veterans—in relation to other medically unexplained physical symptoms such as multiple chemical sensitivity, chronic fatigue syndrome, and fibromyalgia. Our intent is to examine the diagnosis negotiations involved in these mysterious diseases, by showing the different forms of legitimacy involved in such interactions. Factors involved in diagnostic legitimacy are: diagnostic legitimacy in the medical community, lay acceptance of the diagnosis, uncertainty in looking for causes, and social mobilization. We conclude by noting that research may not be able to find any cause for these diseases/conditions; hence, it may be necessary to embrace medical uncertainty, and also to accept patient experience in order to facilitate diagnosis, treatment, and recovery process. Such a change can alter patients’ expectations and taken-for-granted assumptions about medicine, and perhaps in turn reduce the frequency with which dissatisfied individuals form illness groups that mobilize to challenge what they see as an unresponsive medical system.