Patients' reactions to their investigations: a study of 504 patients.

Five hundred and four patients who had undergone hospital investigations were interviewed to find out how much information they had been given about the tests; their reactions before, during and after the test; and any after effects. In 74% of cases the tests had been satisfactorily explained. Patients were told more about complicated procedures such as cardiac catherisation than about routine ones such as venepuncture or barium meal examinations. The comments doctors made while performing the investigations were generally reassuring and were only rarely worrying or impatient. About half the patients suffered pain or discomfort during the test and rather more complained of after effects. Only 5% of patients said they would refuse the test again, though 36% said they would agree only reluctantly. Communication lies at the heart of the problem. Hospitals should consider issuing handouts on investigations to back up the doctor''s information and to dispel myths. Staff should be more careful in concealing frightening-looking equipment, and if patients have to wait during investigations it may help reduce their anxiety if they are provided with something to occupy their time.     

AIDS and the general practitioner: views of patients with HIV infection and AIDS.

An unselected series of outpatients infected with the human immunodeficiency virus (HIV) who attended two London hospitals were interviewed to assess their relationship with their general practitioner. Although most of the 192 patients were registered with a general practitioner, the doctors of only one half knew of the diagnosis. Patients feared a negative reaction from their general practitioner or were concerned about confidentiality. Although those who had told their doctor had received favourable reactions, few general practitioners attempted to counsel or educate their patients. The patients who previously had been open about their homosexuality were not more likely to have told their general practitioner of their HIV infection. Although most did not think that general practitioners were well informed about AIDS, half of the patients wished that general practitioners could take a bigger part in their care.     

National survey of hospital patients.

OBJECTIVE--To survey patients'' opinions of their experiences in hospital in order to produce data that can help managers and doctors to identify and solve problems. DESIGN--Random sample of 36 NHS hospitals, stratified by size of hospital (number of beds), area (north, midlands, south east, south west), and type of hospital (teaching or non-teaching, trust or directly managed). From each hospital a random sample of, on average, 143 patients was interviewed at home or the place of discharge two to four weeks after discharge by means of a structured questionnaire about their treatment in hospital. SUBJECTS--5150 randomly chosen NHS patients recently discharged from acute hospitals in England. Subjects had been patients on medical and surgical wards apart from paediatric, maternity, psychiatric, and geriatric wards. MAIN OUTCOME MEASURES--Patients'' responses to direct questions about preadmission procedures, admission, communication with staff, physical care, tests and operations, help from staff, pain management, and discharge planning. Patients'' responses to general questions about their degree of satisfaction in hospitals. RESULTS--Problems were reported by patients, particularly with regard to communication with staff (56% (2824/5020) had not been given written or printed information); pain management (33% (1042/3162) of those suffering pain were in pain all or most of the time); and discharge planning (70% (3599/5124) had not been told about warning signs and 62% (3177/5119) had not been told when to resume normal activities). Hospitals failed to reach the standards of the Patient''s Charter--for example, in explaining the treatment proposed and giving patients the option of not taking part in student training. Answers to questions about patient satisfaction were, however, highly positive but of little use to managers. CONCLUSIONS--This survey has highlighted several problems with treatment in NHS hospitals. Asking patients direct questions about what happened rather than how satisfied they were with treatment can elucidate the problems that exist and so enable them to be solved.     

Who provides patients with drug information?

One hundred and fifty four patients were interviewed to determine the type and source of information that they had received about drugs that had been prescribed for them. Most had been told how often to take the drugs (145 (94%)) and how much to take each time (143 (93%)), but few had been informed about side effects (49 (32%)) and fewer had received written information (22 (14%)). Pharmacists most commonly supplied information about how often to take the drugs (105 (68%)), how much to take each time (99 (64%)), and the best way to take it (109 (71%)). Doctors most often gave information about duration of treatment (116 (75)) and possible side effects (126 (82%)). Few patients requested specific information on their own initiative. More research is needed to determine how best to communicate drug information to patients.     

How informed is signed consent?

The assurance that patients fully understand the information given to them before they sign the consent form for operation has never been validated in this country. One hundred patients were interviewed by an independent medical observer in one surgical unit in a teaching hospital between two and five days after their operation. Although all the patients interviewed were fully aware that they had had an operation, 27 did not know which organ was operated on and 44 were unaware of the exact nature of the surgical procedure. A significantly higher age group was observed in the group of patients who were unaware of the basic facts relating to their operation, and the problem was encountered most commonly in patients over the age of 60. Because of the medical and legal importance the findings of this pilot study warrant further large scale investigations.     

Patients’ Perceptions of Information and Education for Renal Replacement Therapy: An Independent Survey by the European Kidney Patients' Federation on Information and Support on Renal Replacement Therapy

Background

Selection of an appropriate renal replacement modality is of utmost importance for patients with end stage renal disease. Previous studies showed provision of information to and free modality choice by patients to be suboptimal. Therefore, the European Kidney Patients’ Federation (CEAPIR) explored European patients’ perceptions regarding information, education and involvement on the modality selection process.

Methods

CEAPIR developed a survey, which was disseminated by the national kidney patient organisations in Europe.

Results

In total, 3867 patients from 36 countries completed the survey. Respondents were either on in-centre haemodialysis (53%) or had a functioning graft (38%) at the time of survey. The majority (78%) evaluated the general information about kidney disease and treatment as helpful, but 39% did not recall being told about alternative treatment options than their current one. Respondents were more often satisfied with information provided on in-centre haemodialysis (90%) and transplantation (87%) than with information provided on peritoneal dialysis (79%) or home haemodialysis (61%), and were more satisfied with information from health care professionals vs other sources such as social media. Most (75%) felt they had been involved in treatment selection, 29% perceived they had no free choice. Involvement in modality selection was associated with enhanced satisfaction with treatment (OR 3.13; 95% CI 2.72–3.60). Many respondents (64%) could not remember receiving education on how to manage their kidney disease in daily life. Perceptions on information seem to differ between countries.

Conclusions

Kidney patients reported to be overall satisfied with the information they received on their disease and treatment, although information seemed mostly to have been focused on one modality. Patients involved in modality selection were more satisfied with their treatment. However, in the perception of the patients, the freedom to choose an alternative modality showed room for improvement.     

Effect of genetic counselling on the prevalence of Huntington's chorea.

The relative fertility of sons and daughters of patients with Huntington''s chorea was found to be a little under 0.5 if they had been told of their risk of transmitting the disease before they had started their families. The effect was much the same in those who had attended the genetic clinic at The Hospital for Sick Children on a single occasion and those who had been told of their risk directly, or indirectly through the patient''s spouse or family doctor, by the neurologist who was looking after their affected parent at the National Hospital for Nervous Diseases. If all offspring of patients were informed of their risk the effect on the prevalence of the disorder would be substantial, especially if the mutation rate is low and the reproductive fitness of patients in the past has been close to 1.0. Men and women at risk of developing the disease should not be seen on just one occasion, however: they need continued support by being seen regularly at a special neurological genetic clinic.     

Research, Informed Consent, and the Limits of Disclosure

According to this paper, respect for informed consent implies that subjects should often be told a good deal more than ethical guidelines explicitly or implicitly require. Unless subjects are informed of the researchers' personal characteristics, views, and sponsors whenever they would be likely to consider them significant, their autonomy is being overridden. However, overriding subjects' autonomy is sometimes required by the interests of researchers in not being discriminated against or suffering intrusions into their privacy. This paper resolves the conflict between informed consent and the interests of researchers by recommending that (i) subjects generally should be told of the personal characteristics of researchers when relevant as part of the researchers' job and (ii) that subjects should be told of researchers' views when conceptually connected to the research and (iii) that subjects should almost always be told about sponsorship. While the paper explicitly limits the role of informed consent, these recommendations go significantly beyond most guidelines in their requirements about what information should be disclosed.     

Teaching medical students how to break bad news

PROGRAM OBJECTIVE: To teach medical students to break bad news to patients and their families empathically and competently. SETTING: Seven teaching hospitals affiliated with the University of Toronto since 1987. PARTICIPANTS: All medical students in their third preclinical year. PROGRAM: The course presents a 6-point protocol to guide students in breaking bad news and comprises 2 half-day (3-hour) teaching sessions. Each session incorporates a video presentation, a discussion period and small-group teaching, consisting of exercises followed by 4 different role-playing scenarios conducted with the use of standardized patients. The course was evaluated through 2 questionnaires, 1 administered before and 1 after the course, which measured changes in the students'' attitude and strategy. Questionnaires were administered during 5 of the years since the course was started. A total of 914 precourse and 503 postcourse questionnaires were completed, of which 359 matched pairs of precourse and postcourse questionnaires were analysed to study any changes due to the course. OUTCOMES: Precourse questionnaires showed that 68% of the students had thought about the task of breaking bad news often or very often. Of the 56% of students who had seen clinicians performing this task, 75% felt that they had seen good examples. The proportion of the students who had a plan for how to conduct such an interview rose from 49% before the course to 92% after it, and the proportion who felt they might be reasonably competent in breaking bad news rose from 23% before the course to 74% after it. CONCLUSIONS: The subject of breaking bad news is important to medical students, and it is practicable to design a course to teach the basic techniques involved. Most students perceive such a course as enjoyable and useful and find that it increases their sense of competence and their ability to formulate a strategy for such situations.     

Patients' and general practitioners' satisfaction with information given on discharge from hospital: audit of a new information card.

OBJECTIVE--To determine the attitudes of patients discharged from hospital and their general practitioners to a new information card giving details about admission, diagnosis, and treatment and to assess the completeness of the information on the card. DESIGN--Consecutive patients discharged from the care of three consultant physicians over 16 weeks. SETTING--One general medical ward in a large teaching hospital. PATIENTS--A total of 275 consecutive discharges of 258 patients were studied. The mean age of patients was 60 years and mean duration of admission five days. INTERVENTION--At discharge from the ward all study patients received an information card and a copy of the card in the form of an interim discharge letter to be delivered to their general practitioner. Patients and general practitioners were asked to complete a questionnaire giving their views on the legibility, helpfulness, quality, and quantity of the information they received. Copies of all the information cards were scrutinised for completeness. MAIN RESULTS--The results were based on 208 (76%) forms returned by patients and 214 (78%) forms returned by general practitioners. Information was considered very helpful or quite helpful according to 170 (83%) forms from patients and 197 (92%) forms from general practitioners; sufficient information was provided according to 160 and 182 forms. Most patients and nearly all general practitioners thought it was a good idea to provide this information for patients at discharge. According to 125 forms from patients and 188 from general practitioners the information card was very easy or quite easy to read; 155 patients had read it at least twice and 149 were likely to refer to it again. OTHER RESULTS--The written information about the patient, the diagnosis, and what the patient had been told was generally well completed, although the date of discharge was omitted from 42 (15%) cards. Details of drugs prescribed at discharge were generally thorough. CONCLUSIONS--Giving an information card to all patients at discharge was feasible and favoured by most patients and their general practitioners. Having made minor changes in design, we think that we have produced an information card that is a convenient size and will improve communication between patients, their general practitioners, and hospital doctors. We now issue this card routinely to all patients discharged from our ward and hope that it might be widely adopted.     

Impact of genetic counseling and DNA testing on individuals with colorectal cancer with a positive family history: a population-based study

What is the impact of a genetic evaluation for colorectal cancer susceptibility? We previously reported a study of individuals diagnosed with colorectal cancer at 60 years of age or less in a five-county area of New York including Rochester. Subjects reporting at least one first- or second-degree relative with colorectal cancer were invited to receive genetic counseling and DNA testing. Of the 37 persons tested, we previously reported that 6 were found to have deleterious mutations in MSH2 or MLH1. A mutation has since been found in a seventh subject in another laboratory. To evaluate the impact of the testing experience, we followed-up on 36 of these 37 subjects at 3 and 12 months after communicating their DNA test result. We ascertained their knowledge of colon cancer, whether they told relatives their test result, their surveillance behavior, and their mental health. Three months after receiving their result, subjects knew more about colon cancer if they had more cancer of all types in their family (p = 0.02). At 12 months, they knew more if they had been found to have a mutation (p < 0.001), were younger when DNA tested (p < 0.01), or were younger when diagnosed with cancer (p < 0.03). All but 1 of those found to have an abnormality told relatives. Relatives of 3 subjects in whom a mutation had been found came to us to be tested themselves. At 12 months, surveillance for colon and endometrial cancer was more adherent if there were more total cancers in the family (p < 0.05) or if the testee were more worried about cancer (p < 0.05). Self-assessed mental health at 12 months was better for those who were married (p < 0.05). This study suggests that individuals undergoing a genetic evaluation for an inherited susceptibility to colorectal cancer pursue recommended surveillance and inform relatives of their result.     

Usefulness of letters from hospitals to general practitioners.

In an investigation of the communication between specialist hospital departments and general practitioners 97 general practitioners were asked to say how important selected items of information that the hospital could pass on would be for management of a patient receiving chemotherapy. In addition, the records of 68 patients were examined for coverage of these topics. General practitioners considered technical topics to be more important than social ones. Hospital letters covered technical topics well, apart from details of possible side effects, but did not do the same even for the two social topics that most doctors considered to be essential--namely, what patients have been told about their diagnosis and prognosis. Letters from hospitals to general practitioners cover technical topics well but should include more information relating to the social aspects of the patient''s disease.     

Prescription information leaflets: a pilot study in general practice.

Leaflets containing information about medicines were issued to 56 patients prescribed penicillins and 43 patients prescribed non-steroidal anti-inflammatory drugs. The patients were interviewed between four and 10 days later and their responses compared with those of 65 patients prescribed penicillin and 33 prescribed nonsteroidal anti-inflammatory drugs who did not receive a leaflet. Patients who received a leaflet were more likely to be completely satisfied with their treatment and with the information they had been given. They were also more likely to know the name of their medicine and much more aware of potential unwanted effects. Although there was no evidence that knowledge increased the incidence of adverse effects, when these did occur they were more likely to be recognised as being due to the medicine. Further studies of other leaflets are warranted, including leaflets for drugs that are taken long term.     

Severe adult burn survivors. What information about skin allografts?

During the acute phase of a severe burn, surgery is an emergency. In this situation, human skin allografts constitute an effective temporary skin substitute. However, information about the use of human tissue can not be given to the patients because most of the allografted patients are unconscious due to their injury. This study explored the restitution of information on skin donation to patients who have been skin allografted and who have survived their injury. A qualitative study was conducted due to the limited number of patients in ability to be interviewed according to our medical and psychological criteria. 12 patients who had been treated between 2002 and 2008 were interviewed. Our results show that 10 of them ignored that they had received skin allografts. One of the two patients who knew that they had received allografts knew that skin had been harvested from deceased donor. All patients expressed that there is no information that should not be delivered. They also expressed their relief to have had the opportunity to discuss their case and at being informed during their interview. Their own experience impacted their view in favor of organ and tissue donation.     

Women's understanding of abnormal cervical smear test results: a qualitative interview study.

OBJECTIVE: To describe how women interpret their experiences of diagnosis and treatment of a cervical abnormality and how healthcare services for such women can be improved. DESIGN: Qualitative study using detailed individual interviews. SETTING: Australian gynaecology clinics. SUBJECTS: 29 Women who had a cervical cytological abnormality and who attended a gynaecologist. MAIN OUTCOME MEASURES: Women''s views on their diagnosis and their information needs. RESULTS: Most women wanted to participate in decisions about their care but found it difficult to get the information they required from doctors because they were confused by what their doctors told them and felt unable to ask questions in the consultation. Medical terms such as wart virus and precancer were difficult to understand. Not being able to see their cervix also made it hard for women to understand what their abnormality meant and what treatment entailed. Most women tried to make sense of their abnormality in the context of their everyday lives. For some women their gynaecological care was not consistent with the way they understood their abnormality. CONCLUSIONS: The inherent power structure of medical practice combined with time pressures often make it difficult for doctors to give the detailed information and reassurance patients need when a diagnosis is distressing or when investigation and treatment are strange and upsetting.     

Reconsidering detached concern: the case of intensive-care nurses

The concept of detached concern, as proposed by Renée Fox in Experiment Perilous (1959), is often used in the literature today in a way she did not intend. Rather than viewing detachment and concern as dualities, scholars frequently conceive of them as dichotomous, emphasizing detachment over concern. We reconsider detached concern here through the stories 37 intensive-care nurses told about their most memorable patients. While many described efforts to keep emotionally distant from patients, they also expressed concern for patients they felt connected to, especially those who were a first for them, who were long-term primary patients, who surprised them, or who died. The care nurses provide for these patients is shaped sociologically by their training and institutional contexts and is not an aberration or indicative of their losing control of their feelings. Instead, it is evidence of the dual nature of detached concern and of the importance of viewing the concept as describing more than emotional detachment.     

Looking to score: the dissociation of goal influence on eye movement and meta-attentional allocation in a complex dynamic natural scene

Several studies have reported that task instructions influence eye-movement behavior during static image observation. In contrast, during dynamic scene observation we show that while the specificity of the goal of a task influences observers' beliefs about where they look, the goal does not in turn influence eye-movement patterns. In our study observers watched short video clips of a single tennis match and were asked to make subjective judgments about the allocation of visual attention to the items presented in the clip (e.g., ball, players, court lines, and umpire). However, before attending to the clips, observers were either told to simply watch clips (non-specific goal), or they were told to watch the clips with a view to judging which of the two tennis players was awarded the point (specific goal). The results of subjective reports suggest that observers believed that they allocated their attention more to goal-related items (e.g. court lines) if they performed the goal-specific task. However, we did not find the effect of goal specificity on major eye-movement parameters (i.e., saccadic amplitudes, inter-saccadic intervals, and gaze coherence). We conclude that the specificity of a task goal can alter observer's beliefs about their attention allocation strategy, but such task-driven meta-attentional modulation does not necessarily correlate with eye-movement behavior.     

Patients' attitudes to induction and labour.

An attempt was made to ascertain patients'' attitudes towards planned induction and labour. Twenty per cent of patients had not heard of induction before their pregnancy, and those who had had most probably heard about it from relations and friends rather than the media. Most patients had no firm opinions on induction of labour but were usually glad to have their pregnancy ended. Many considered that they had not been given enough information by the medical staff on their induction. The amount of pain experienced by patients at amniotomy was related to the "favourability" of the cervix. Possibly women with a low cervical score should be given more premedication or inhalation analgesia at amniotomy. Most patients found injections of narcotic agents adequate analgesia in labour. Those patients who did not receive adequate analgesia were principally those who had either very short or quite long labours. Patients with long labours may benefit from more liberal use of analgesia, but no satisfactory form of analgesia seems to be available for patients who are likely to deliver within two or three hours of induction.     

Autologous versus allogeneic transfusion: patients' perceptions and experiences

BACKGROUND: Preoperative autologous donation is one way to decrease a patient''s exposure to allogeneic blood transfusion. This study was designed to determine patients'' perceptions about the autologous blood donation process and their experiences with transfusion. METHODS: To assess patient perception, a questionnaire was administered a few days before surgery to patients undergoing elective cardiac and orthopedic surgery in a Canadian teaching hospital. All patients attending the preoperative autologous donation clinic during a 10-month period were eligible. A convenience sample of patients undergoing the same types of surgery who had not predonated blood were selected from preadmission clinics. Patient charts were reviewed retrospectively to assess actual transfusion practice in all cases. RESULTS: A total of 80 patients underwent cardiac surgery (40 autologous donors, 40 nondonors) and 73 underwent orthopedic surgery (38 autologous donors, 35 nondonors). Of the autologous donors, 75 (96%) attended all scheduled donation appointments, 73 (93%) said that they were "very likely" or "likely" to predonate again, and 75 (96%) said that they would recommend autologous donation to others. There was little difference in preoperative symptoms between the autologous donors and the nondonors, although the former were more likely than the latter to report that their overall health had remained the same during the month before surgery (30 [75%] v. 21 [52%] for the cardiac surgery patients and 30 [79%] v. 18 [51%] for the orthopedic surgery patients). When the autologous donors were asked what they felt their chances would have been of receiving at least one allogeneic blood transfusion had they not predonated, the median response was 80%. When they were asked what their chances were after predonating their own blood, the median response was 0%. The autologous donors were significantly less likely to receive allogeneic blood transfusions (6 [15%] for cardiac surgery and 3 [8%] for orthopedic surgery) than were the nondonors (14 [35%] for cardiac surgery and 16 [46%] for orthopaedic surgery). They were, however, more likely to receive any transfusion (autologous or allogeneic) than were the nondonors (25 [63%] v. 14 [35%] for cardiac surgery and 31 [81%] v. 16 [46%] for orthopedic surgery). INTERPRETATION: Patients who underwent preoperative autologous blood donation were positive about the experience and did not report more symptoms than patients who did not donate blood preoperatively. Autologous donors overestimated their chances of receiving allogeneic blood transfusions had they not predonated and underestimated their chances after they had predonated. They were less likely to receive allogeneic transfusions, but more likely to receive any type of transfusion, than were patients who did not predonate.     

Should we tell them when their blood pressure is up?

We carried out two studies to determine the effects of feedback on subsequent blood pressure and heart rate readings in subjects without significant cardiovascular abnormalities. In both studies the subjects were randomly assigned to be told that their blood pressure was normal or was high or to receive no feedback at all; 3 minutes later another reading was taken and correct feedback provided. Study 1 was done in 114 patients who attended a family practice teaching unit for an office visit; subjects taking cardioactive medication or with chronically elevated blood pressure (diastolic pressure more than 95 mm Hg) or known low pressure (diastolic pressure less than 60 mm Hg) were excluded. Half of the subjects received feedback from a nurse and the other half from a physician. We found no effect of type of feedback or type of practitioner on subsequent readings. No adaptation of diastolic blood pressure or heart rate took place, whereas a similar rest period in the laboratory consistently triggers cardiovascular adaptation. Given the field nature of the study it was not clear whether the intervention was not powerful or whether the practitioner-patient interactions diffused the effects of an otherwise powerful intervention. Therefore, a second study with the same design was carried out in a controlled laboratory setting with 61 university students who believed they were in the adaptation phase of an experimental stress protocol. The subjects did not interact with the experimenter, who provided only the initial feedback, via intercom. The findings replicated those of study 1: type of feedback had no significant effect on subsequent blood pressure levels, and all types of feedback prevented cardiovascular adaptation. We recommend that patients be allowed to rest alone for at least 10 minutes before blood pressure is measured. Our findings suggest that practitioners need not be concerned about telling normotensive or borderline hypertensive patients that their blood pressure is elevated.