European patients' views on the responsiveness of health systems and healthcare providers

BACKGROUND: Responsiveness to patients is now seen as a key characteristic of effective health systems. This study aimed to learn more about European people's views on the responsiveness of their country's health systems and healthcare providers. METHODS: Telephone survey with random samples of the populations in Germany, Italy, Poland, Slovenia, Spain, Sweden, Switzerland and the UK using random digit dialling. RESULTS: Responses were obtained from 8119 people aged 16 and over. Just over half the respondents said that doctors always listened carefully to them, gave them time for questions and provided clear explanations. Respondents from Switzerland and the UK reported consistently high rates of satisfaction with doctors' communication skills, while respondents from Poland were significantly less satisfied. Younger people were more critical than older people. Expectations of patient involvement in treatment decisions were high, particularly among younger people, with 74% indicating a desire to be actively involved. Most respondents felt they should have a choice of primary care doctor, specialist doctor and hospital, but less than half felt they had sufficient information to make an informed choice. There were significant variations between the countries in reported levels of involvement and in satisfaction with opportunities for choice. CONCLUSIONS: The results suggest that many European patients want a more autonomous role in health care decision-making. Policy-makers and clinicians should consider how to narrow the gap between public expectations and patients' experience.     

Patients' decisions for treatment of end-stage renal disease and their implications for access to transplantation

Gaining access to kidney transplantation is a complex process that involves treatment decisions made by patients. Despite several advantages of kidney transplantation, some patients choose to remain on hemodialysis for treatment of end-stage renal disease. The present study was undertaken to describe the sociocultural factors influencing patients' decisions to remain on dialysis compared to those who sought a transplant. The study also examined whether African Americans made decisions different from European Americans which would offer insights into one of many factors resulting in them receiving disproportionately fewer kidney transplants. Using a qualitative approach supplemented by a quantitative approach, interviews employing open-ended questions and a card sort technique were conducted with 79 hemodialysis patients. Patients who preferred to remain on dialysis were significantly older and more likely to be unmarried and Protestant. The relationship between treatment decisions and ethnicity was inconclusive due to multiple, interrelated covariates. The three most common reasons patients reported for remaining on dialysis included: doing well on dialysis, fear of being "cut on" from a transplant, and knowing other patients whose kidney transplant failed. This study identified sociocultural and ethnomedical beliefs and values about the body and transplantation that inform patients' treatment decisions. This study also generated data that illuminate the complexity of patients' decisions and how these affect patients' preferences regarding transplantation. The results emphasize the need for policy makers to recognize patients' decisions when accounting for alleged difficulties in gaining access to transplantation.     

Communicating with older adults about sexual issues: How are these issues handled by physicians with and without training in human sexuality?

Although sexuality is an important part of health and emotional well-being throughout the entire life cycle, including during old age, little is known about how physicians discuss or approach the topic of sexuality during later life. The present study examined the perspectives of two groups of physicians toward discussing sexuality with older patients: 17 physicians who did not have any training in human sexuality and 21 physicians who were certified as sex therapists. The interviews underwent thematic content analysis to identify and code major themes and patterns. Qualitative analysis of the interviews yielded three main themes: (a) discourse between physicians and older adults regarding sexuality, (b) diagnosing sexual dysfunction among older adults, and (c) treating sexual dysfunction among older adults. Physicians who were not trained in sex therapy did not regularly ask their older patients about sexual functioning and/or problems with sex, tended to diagnose sexual problems from a medical perspective, and offered medication as the main treatment for sexual problems. Physicians trained as sex therapists felt more comfortable discussing sex-related issues with their older patients and diagnosed sexual problems from a medical, social, dyadic and psychological perspective. Although they offered their older patients a greater variety of medication-oriented interventions than those without training in sexuality, they did not rush into such interventions and instead emphasised the importance of the psychological and relational aspects of sex. The present study highlights the importance of human sexuality training for physicians and points out the effects of such training on the discourse, diagnosis and treatment of sexual concerns in later life.     

Quality of life of patients in renal replacement therapy in Brazil: comparison of treatment modalities

Purpose

This study aimed to analyze and compare the quality of life of renal replacement therapy patients undergoing hemodialysis, peritoneal dialysis and those with renal transplantation in Brazil. In addition, we aimed to verify factors associated with patients?? quality of life and the relationship between quality of life and treatment modality, socioeconomic and demographic conditions as well as aspects related to the disease and health services.

Methods

A representative sample of the dialysis units and transplant centers was obtained. Structured questionnaires were used to interview 3,036 patients in one of three treatment modalities: hemodialysis, peritoneal dialysis and renal transplant. Information was collected about socioeconomic and demographic characteristics and quality of life measures.

Results

There were significant differences between renal transplants and both forms of dialysis for all dimensions of the SF-36. Hemodialysis patients showed better results in the dimensions of functional capacity, physical aspects and social aspects, compared to peritoneal dialysis patients. Renal transplant patients had the best mean score in the physical component of quality of life. There were no significant differences among treatment groups regarding the mental component of quality of life. The physical and mental components were associated with comorbidities and age; however, older patients had better mental quality of life but worse physical quality of life. Patients in a higher socioeconomic class and patients that were not hospitalized also reported better quality of life. Unmarried and male patients presented better physical quality of life. The dialysis units and transplant centers influenced the patients?? quality of life.

Conclusions

Renal transplant patients have the best quality of life of the three treatment modalities. It is necessary to increase access to renal transplants.     

Exploring the personal reality of disability and recovery: a tool for empowering the rehabilitation process

People experiencing disability and chronic disease often feel powerless, relinquishing medical control to "more knowledgeable" professionals. This article presents qualitative and quantitative results from three individual patients experiencing an emerging procedure called Recovery Preference Exploration (RPE). To inspire greater patient involvement, self-direction, and individual choice, we instructed participants to create an imagined recovery path, exposing recovery preferences while learning about clinical rehabilitation concepts. Results uncovered important values and feelings about disability, providing a richer context for patient evaluation and treatment goal modification. Applying mixed methods, RPE is presented as an explanatory process for quantifying recovery preferences in a way that stimulates rich narrative of how people see different types of disabilities. RPE shows promise for increasing depth of discussions among patients, family, and clinicians. RPE may promote greater quality of life through patient empowerment by directed learning, increased communication, and enhanced self-knowledge.     

Trust relations in health care: developing a theoretical framework for the "new" NHS

PURPOSE: This paper seeks to address how and why trust relations in the NHS may be changing and presents a theoretical framework for exploring them in future empirical research. DESIGN/METHODOLOGY/APPROACH: This paper provides a conceptual analysis. It proposes that public and patient trust in health care in the U.K. appears to be shaped by a variety of factors. From a macro perspective, any changes in levels of public trust in health care institutions appear to derive partly from top-down policy initiatives that have altered the way in which health services are organised and partly from broader social and cultural processes. A variety of policy initiatives, including the introduction of clinical governance and the resulting use of performance management to scrutinise and change clinical activity, increasing patient choice and involvement in decision-making regarding their care, are examined for how they have changed the context for trust relations within the NHS. FINDINGS: It is argued that these policy initiatives have produced a new context for trust relations within the NHS, shifting the inter-dependence and distribution of power between patients, clinicians, and mangers and changing their vulnerability to each other and to health care institutions. The paper presents a theoretical framework based on current policy discourses which illustrates how new forms of trust relations may be emerging in this new context of health care delivery, reflecting a change in motivations for trust from affect based to cognition based trust as patients, clinicians and managers become more active partners in trust relations. The framework suggests that trust relations in all three types of relationship in the "new" modernised NHS might, in general, be particularly characterised by an emphasis on communication, providing information and the use of "evidence" to support decisions in a reciprocal, negotiated alliance. ORIGINALITY/VALUE: The paper examines the drivers for change in trust in health care relations in the U.K. and develops a theoretical framework for the emergence of new trust relations that can be subsequently explored through empirical research.     

Factors Associated With Withdrawal From Dialysis Therapy in Incident Hemodialysis Patients Aged 80 Years or Older

ObjectivesAmong kidney disease patients ≥80 years progressing to end-stage renal disease, there is growing interest in conservative nondialytic management approaches. However, among those who have initiated hemodialysis, little is known about the impact of withdrawal from dialysis on mortality, nor the patient characteristics associated with withdrawal from dialysis.Study designHistorical cohort study.Setting and participantsWe examined 133,162 incident hemodialysis patients receiving care within a large national dialysis organization from 2007 to 2011.MeasuresWe identified patients who withdrew from dialysis, either as a listed cause of death or censor reason. Incidence rates and subdistribution hazard ratios for withdrawal from dialysis as well as 4 other censoring reasons were examined across age groups. In addition, demographic and clinical characteristics associated with withdrawal from dialysis therapy among patients ≥80 years old was assessed using logistic regression analysis.ResultsAmong 17,296 patients aged ≥80 years, 10% of patients withdrew from dialysis. Duration from the last hemodialysis treatment to death was 10 [interquartile range 6-16] days in patients with available data. Withdrawal from dialysis was the second and third most common cause of death among patients aged ≥80 years and <80 years, respectively. Among patients ≥80 years, minorities were much less likely than non-Hispanic whites to stop dialysis. Other factors associated with higher odds of dialysis withdrawal included having a central venous catheter compared to an arteriovenous fistula at dialysis start, dementia, living in mid-west regions, and less favorable markers associated with malnutrition-inflammation-cachexia syndrome such as higher white blood cell counts and lower body mass index, albumin, and normalized protein catabolic rate.Conclusion/ImplicationsAmong very-elderly incident hemodialysis patients, dialysis therapy withdrawal exhibits wide variations across age, race and ethnicity, regions, cognitive status, dialysis vascular access, and nutritional status. Further studies examining implications of withdrawal from dialysis in older patients are warranted     

Provider-patient relations and treatment choice in the era of fiscal incentives: the case of the end-stage renal disease program

Debates about the extent to which patients can and should participate in medical decision making take on new urgency as cost-containment efforts give patients more financial incentives. The Health Care Financing Administration's recent proposal to enable dialysis patients to "price shop" aroused consternation among nephrologists. A working seminar elucidated their fears about professional incomes and about increased patient autonomy.     

An easy way to measure quality of physician-patient interactions

This article describes a simple method for rating the patient-clinician interaction from the perspective of the older adult patient, with the goal of improving patient outcomes. A measure for rating the quality of an interaction with a patient who is bothered by a problem is called the Functional Education Index or FNXEI. Usually, sicker patients are known to be less satisfied with their medical care. What is unique about the FNXEI is that it is not affected by a patient's overall health, giving clinicians an accurate account of their interactions with patients. Considering this, the FNXEI becomes a useful tool for improving care because it has face validity and specificity about the type of care clinicians are providing for their older adult patients.     

"A waste of time": Hispanic women's attitudes toward physical activity

Despite a lack of studies on Hispanic midlife women's physical activity, the existing studies have indicated that Hispanics' ethnic-specific attitudes toward physical activity contributed to their lack of physical activity. However, little is still clearly known about Hispanic midlife women's attitudes toward physical activity. The purpose of this study was to explore Hispanic midlife women's attitudes toward physical activity using a feminist perspective. The study was a 6-month qualitative online forum among 23 Hispanic women who were recruited through Internet communities/groups. The data were collected using 17 online forum topics on attitudes toward physical activity and ethnic-specific contexts. The data were analyzed using thematic analysis. Three major themes emerged from the data analysis process: (a) "family first, no time for myself," (b) "little exercise, but naturally healthy," and (c) "dad died of a heart attack." Although some of the women perceived the importance of physical activity due to their family history of chronic diseases, the study participants thought that physical activity would be a waste of time in their busy daily schedules. These findings provided directions for future health care practice and research to increase physical activity among Hispanic midlife women.     

Clinicians’ Implicit Ethnic/Racial Bias and Perceptions of Care Among Black and Latino Patients

PURPOSE

We investigated whether clinicians’ explicit and implicit ethnic/racial bias is related to black and Latino patients’ perceptions of their care in established clinical relationships.

METHODS

We administered a telephone survey to 2,908 patients, stratified by ethnicity/race, and randomly selected from the patient panels of 134 clinicians who had previously completed tests of explicit and implicit ethnic/racial bias. Patients completed the Primary Care Assessment Survey, which addressed their clinicians’ interpersonal treatment, communication, trust, and contextual knowledge. We created a composite measure of patient-centered care from the 4 subscales.

RESULTS

Levels of explicit bias were low among clinicians and unrelated to patients’ perceptions. Levels of implicit bias varied among clinicians, and those with greater implicit bias were rated lower in patient-centered care by their black patients as compared with a reference group of white patients (P = .04). Latino patients gave the clinicians lower ratings than did other groups (P <.0001), and this did not depend on the clinicians’ implicit bias (P = .98).

CONCLUSIONS

This is among the first studies to investigate clinicians’ implicit bias and communication processes in ongoing clinical relationships. Our findings suggest that clinicians’ implicit bias may jeopardize their clinical relationships with black patients, which could have negative effects on other care processes. As such, this finding supports the Institute of Medicine’s suggestion that clinician bias may contribute to health disparities. Latinos’ overall greater concerns about their clinicians appear to be based on aspects of care other than clinician bias.Key words: race, ethnicity, communication, prejudice, patient-centered care, healthcare disparities, primary care, practice-based research     

Impoverishment and patients' "willingness" and "ability" to pay for improving the quality of health care in Palestine: an assessment using the contingent valuation method

This paper examines the impact of impoverishment on patients' preferences with respect to improving the quality of health care, by focusing on the sudden impoverishment experience that affected the Occupied Palestinian Territory (OPT) since the beginning of the second Palestinian Uprising of September 2000. Two random samples of patients (352 and 353 individuals, respectively) were interviewed about their willingness to pay for improving a set of quality attributes in delivery of primary health care, prior and after the occurrence of this crisis situation, using a contingent valuation questionnaire. Impoverishment did not seem to affect the structure of patients' preferences vis-à-vis some essential quality attributes such as "doctor-patient relationship" and "drug availability". However, preferences toward "luxury" quality attributes, e.g., "geographical proximity" and "waiting time", suffered from both income-dependent and income-independent negative impoverishment effects. We conclude that impoverishment might not only affect individuals' availability of resources but also the ability of certain groups of patients, notably women, villagers and the elderly, to adequately express their preferences toward improving the quality of health care delivery. The issue of how willingness to pay results should be interpreted in the light of our study for policy implications was discussed. The study raises strong doubts about the current policy of introducing patients' cost recovery schemes for funding primary health care in the current crisis situation of the OPT.     

International Consensus Definition of a Serious Infection in a Geriatric Patient Presenting to Ambulatory Care

Early recognition and prompt treatment of a serious infection is important to optimize prognosis in older patients. The current evidence base underpinning this early recognition in ambulatory care is scattered and haphazard, calling for new research to strengthen clinical practice. Before embarking on such studies, it is important to seek consensus on what constitutes a serious infection in older patients presenting to ambulatory care. We conducted a 4-round e-Delphi study seeking consensus among medical professionals who deliver clinical care to older patients using online questionnaires and feedback. Twenty-two specialists in emergency care, general practice, geriatrics, and infectious diseases from 10 different countries participated in our study. We constructed 18 statements from the answers to the open questions in round 1, which were then rated by the participants in 2 consecutive rounds. After assessing the level of agreement, consensus, and stability, the following definition was preferred by 94% of the participants: “A serious infection in a geriatric patient presenting to ambulatory care is an infection with a high risk of complications, functional decline, and/or mortality, requiring a prompt diagnostic and therapeutic approach in the appropriate care setting. The most important determinants of the choice of setting are the level of emergency, the geriatric profile of the patient (frailty status, functional status, and comorbidities), and the patients’ level of autonomy and personal preferences. Factors such as the feasibility of home care, the potential consequences of delayed or suboptimal treatment and infection specific treatment requirements should be weighed as well when choosing the appropriate care setting.” Based on consensus among 22 clinicians working in 10 different countries, we propose a definition for serious infections in geriatric patients presenting to ambulatory care. This will form the basis of future studies in this domain.     

How older adults combine medical and experiential notions of depression

Past research has suggested that patients might not accept depression treatment in part because of differences between patient and doctor understandings of depression. In this article, we use a cultural models approach to explore how older adults incorporate clinical and experiential knowledge into their model of depression. We conducted semistructured interviews about depression with 19 patients aged 65 years and older who were identified by their physicians as depressed. We found that whereas older adults viewed as helpful the doctor's ability to identify symptoms and "put it all together" into a diagnosis, they felt that this viewpoint omitted important information about the etiology and feeling of depression grounded in embodied experience and social context. Our findings suggest that more emphasis on issues related to the etiology of depression, the effect of depression on social relationships, and emotions emanating from depression might lead to more acceptable depression treatments for older adults.     

香港地区“腹膜透析优先”政策的成功实施及其对我们的启示

目的:了解香港地区腹膜透析技术应用现状及其开展"腹膜透析优先"政策的原因,并且借鉴香港地区的成功经验。方法:采用文献法搜集相关文献。结果:香港的"腹膜透析优先"政策使其80%以上的终末期肾病患者使用腹膜透析技术。结论:香港地区的成功经验值得我们借鉴,以解决我们终末期肾病治疗当前存在的问题。     

Older patients in the acute care setting: rural and metropolitan nurses' knowledge, attitudes and practices

ABSTRACT: Many studies reporting nurses' knowledge of and attitudes toward older patients in long-term care settings have used instruments designed for older people. However, nurses' attitudes toward older patients are not as positive as their attitudes toward older people. Few studies investigate acute care nurses' knowledge of and attitudes toward older patients. In order to address these shortcomings, a self-report questionnaire was developed to determine nurses' knowledge of, and attitudes and practices toward, older patients in both rural and metropolitan acute care settings. Rural nurses were more knowledgeable about older patients' activities during hospitalisation, the likelihood of them developing postoperative complications and the improbability of their reporting incontinence. Rural nurses also reported more positive practices regarding pain management and restraint usage. However, metropolitan nurses reported more positive attitudes toward sleeping medications, decision making, discharge planning and the benefits of acute gerontological units, and were more knowledgeable about older patients' bowel changes in the acute care setting.     

Patients' and clinicians' views of comparing the performance of providers of surgery: a qualitative study

Objectives

Comparison of providers'' outcomes is intended to encourage patient choice and stimulate clinicians to improve the quality of their services. Given that success will depend on how patients and clinicians respond, our aim was to explore their views of using outcome data to compare providers.

Method

Qualitative data from six focus groups with patients (n = 45) and seven meetings with surgical clinicians (n = 107) were collected during autumn 2010. Discussions audio‐taped, transcribed and a thematic analysis carried out.

Results

Patients and clinicians confirmed the value of making comparisons of the outcomes of providers publicly available. However, both groups harboured three principal concerns: the validity of the data; fears that the data would be misinterpreted by the media, politicians and commissioners, and the focus should not just be on providers but also on the performance of individual surgeons. In addition, patients felt that information on providers'' outcomes would only ever have a limited impact on their choice because there were other important factors to be taken into account: accessibility, waiting time, the size of the provider and the quality of other aspects such as cleanliness and nursing. Also patients acknowledged the importance of friends'' and relatives'' experiences and that they would seek their GP''s advice.

Conclusions

While comparisons of providers'' outcomes should be available to patients to stimulate improvements in performance, information should be directed principally to hospital clinicians and to GPs. Impact may be enhanced by providing data on individual clinicians rather than providers. The extent to which these findings are generalizable to other areas of health care is uncertain.     

Hastening Death by Selective Disclosure of Treatment Options—Beneficence or “Euthanasia by Deception”?

In this paper I make a radical claim regarding selective non-disclosure of treatment options that have some hope of prolonging a patient's life. I suggest that selective non-disclosure under such circumstances is tantamount to what might be called "euthanasia by deception." I offer a case to test the validity of my claim and to demonstrate how the failure to offer or, at least, to discuss renal dialysis in this case (and, by inference, any other form of treatment which has some hope of prolonging a patient's life) qualifies as paternalism in its most egregious form. I discuss the actions of the health care team and try to find some plausible reasons why they acted as they did. I conclude that there must be greater emphasis placed on teaching clinicians how better to incorporate frank, open and on-going discussion about the central elements of the therapeutic relationship with patients long before they lose decisional capacity.