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1.  Public opinion on systems for feeding back views to the National Health Service 
Quality & safety in health care  2003;12(6):435-442.
Objectives: To explore public opinions about different systems for feeding back views about health services to the National Health Service.
Design: Questionnaire survey.
Setting: NHS Grampian, Scotland, UK.
Participants: A random sample of 10 000 adults registered with a general practitioner in Grampian was invited to opt in to the study; 2449 were sent questionnaires.
Outcome measures: Opinions about different feedback mechanisms and their likely effectiveness in three scenarios; reasons for preferring particular mechanisms.
Results: Of 1951 respondents, over 80% thought patient representatives would be a good way for people to pass on their ideas about the NHS and would help to improve it. Patient representatives were the most widely preferred course of action for two out of three scenarios. People explained their preferences for particular feedback systems mainly in terms of their ease of use, the perception that they would be listened to, and the likelihood of anything being done about what they said. However, people varied in their judgements about the likely effectiveness of different feedback systems. Preferences for particular systems varied according to the types of situation considered. Some people are reluctant to approach clinical staff with concerns about healthcare quality. A substantial minority have no confidence that their concerns would be listened to or acted upon, however they were expressed.
Conclusion: The "patient representative" function has substantial popular support and could facilitate local learning and action to improve the quality of health services from users' perspectives. Feedback systems must demonstrate their effectiveness if they are to gain and retain public confidence.
doi:10.1136/qhc.12.6.435
PMCID: PMC1758035  PMID: 14645759
2.  Training pharmacists and pharmacy assistants in the stage-of-change model of smoking cessation: a randomised controlled trial in Scotland 
Tobacco Control  1998;7(3):253-261.
OBJECTIVE—To evaluate a training workshop for community pharmacy personnel to improve their counselling in smoking cessation based on the stage-of-change model.
DESIGN—A randomised controlled trial of community pharmacies and pharmacy customers.
SETTING—All 76 non-city community pharmacies registered in Grampian, Scotland, were invited to participate. Sixty-two pharmacies (82%) were recruited.
SUBJECTS—All the intervention pharmacy personnel were invited to attend the training; 40 pharmacists and 54 assistants attended. A total of 492 customers who smoked (224 intervention, 268 controls) were recruited during the 12-month recruitment period (overall recruitment rate 63%).
MAIN OUTCOME MEASURES—The perceptions of customers and pharmacy personnel of the pharmacy support and self-reported smoking cessation rates for the two groups of customers at one, four, and nine months.
RESULTS—The intervention customer respondents were significantly more likely to have discussed stopping smoking with pharmacy personnel, 85% (113) compared with 62% (99) of the controls (p<0.001). The former also rated their discussion more highly; 34% (45) of the intervention customers compared with 16% (25) of the controls rated it as "very useful" (p = 0.048). Assuming non-responders had lapsed, one-month point prevalence of abstinence was claimed by 30% of intervention customers and 24% of controls (p = 0.12); four months' continuous abstinence was claimed by 16% of intervention customers and 11% of controls (p = 0.094); and nine months' continuous abstinence was claimed by 12% of intervention customers and 7% of controls (p = 0.089). These trends in outcome were not affected by potential confounders (sex, age, socioeconomic status, nicotine dependence, and type of nicotine replacement product used) or adjustment for clustering.
CONCLUSIONS—The intervention was associated with increased and more highly rated counselling, and a trend toward higher smoking cessation rates, indicating that community pharmacy personnel have the potential to make a significant contribution to national smoking cessation targets.


Keywords: community pharmacy; health education; smoking cessation
PMCID: PMC1763872  PMID: 9825420
3.  Palliative care at home: an audit of cancer deaths in Grampian region. 
The British Journal of General Practice  1998;48(431):1299-1302.
BACKGROUND: Ninety per cent of the last year of life of cancer patients is spent at home. Some studies have suggested that care in this setting is often suboptimal. Information on the standard of palliative care delivered at home by general practitioners (GPs) and their teams is limited, and clarification of the problems faced is needed. AIM: To audit the home-based palliative care of patients dying of cancer. METHOD: Matched postal questionnaires were sent to the GPs and nurses of 1086 successive patients dying of cancer in whatever setting in the Grampian region of Scotland some six weeks after the death to establish the professionals' perception of symptom control, communication problems, use of services, and information given to patients and relatives. RESULTS: Response rates were 88.8% for GPs (964 out of 1086) and 87.1% for nurses (325 out of 375 that were passed on to nurses). Two-thirds of patients received palliative care at home. Pain was poorly controlled in 15.7%, and poor control of other symptoms ranged from 13.8% (nausea and vomiting) to 21% (depression and dyspnoea). Communication difficulties were present in 93.7% of cases, although only 5.2% of these were of a major nature. District nurses were involved in 76.7% of cases and Macmillan nurses in 28.0%. Twenty-six per cent of referrals to district nurses were assessed as being late in the course of the illness. Patients were fully informed about the diagnosis in 66.3% of cases and about the prognosis in 55.4%. General practitioners were more likely to report the presence of communication problems between themselves and the patient (when compared with nurses: 43.9% versus 28.0%), more likely to report that patients were 'not at all informed' about self-help groups (57.5% versus 36.3%), and were less likely to report the involvement of occupational therapists (21.8% versus 39.7%). CONCLUSIONS: Levels of reporting of poor symptom control by professionals was much lower than levels reported by relatives in other studies, but there was no difference between the reporting of GPs and nurses. However, a number of areas were identified where care could be enhanced by improved teamwork and further education and training in symptom control, as well as in communication, use of services, and information provision.
PMCID: PMC1410136  PMID: 9747545
4.  Stroke services in general practice--are they satisfactory? 
BACKGROUND: The contribution of general practice and primary care teams to stroke care has received surprisingly little attention despite research evidence on the importance of coordinated care. AIM: To determine general practitioners' (GPs') and their patients' satisfaction with hospital and community services for stroke patients in Grampian Region, Scotland. METHOD: A questionnaire survey of 138 stroke patients and their GPs was carried out six weeks after each patient was discharged home between June 1995 and January 1996. Outcomes measured were GP and patient satisfaction with services, Barthel Index, Hospital Anxiety and Depression scores, London Handicap Score, and Homsat and Hospsat scores (satisfaction with stroke services). RESULTS: Response rates of 95% (131) for GPs and 91% (125) for patients were obtained. GPs and patients were generally satisfied with services. Stroke patients were more likely to have had contact with their GP than with any other service. Adverse comments from GPs focused on problems with hospital discharge letters. At six weeks, patients received an average of 2.5 community services and 1.5 hospital services, but there was wide variation across disability groups. CONCLUSIONS: Levels of satisfaction were high, but the wide range and variation in services used by patients emphasized the complexity of the primary care of stroke patients; the need for coordination, review and effective links with hospital; and the key role of the GP.
PMCID: PMC1410073  PMID: 9463978
5.  Patient centred assessment of quality of life for patients with four common conditions 
Quality in Health Care : QHC  1999;8(1):22-29.
OBJECTIVES: To assess the reliability, validity, and responsiveness of a new quality of life measure, the patient generated index (PGI) of quality of life, in patients with four common clinical conditions. DESIGN: Prospective one year follow up study. SETTING: Outpatient departments and four general practices in Grampian, Scotland. SUBJECTS: 1746 patients consulting a general practitioner in one of four practices, or referred to outpatients from all Grampian practices over a four month period, with low back pain, menorrhagia, suspected peptic ulcer, and varicose veins. MAIN OUTCOME MEASURES: Postal questionnaire including the PGI, SF-36 health survey, and clinically derived condition specific measures of disease severity. RESULTS: Test-retest reliability was satisfactory for group comparisons (intraclass correlation coefficient 0.65). Validity was confirmed by the observed association of the PGI with the SF-36, condition specific instruments, and sociodemographic variables. For low back pain, the PGI and the SF- 36 pain scale were found to be most responsive to clinical change. For patients with menorrhagia and suspected peptic ulcer, only the condition specific instruments detected larger changes than the PGI. CONCLUSIONS: It is possible to develop a patient generated index of quality of life that not only assesses the extent to which patients' expectations are matched by reality but also satisfies criteria of reliability and responsiveness to change. Further work is required to make the PGI more acceptable and meaningful to patients, but it is believed that it offers an exciting new approach to the evaluation of medical care.
PMCID: PMC2483625  PMID: 10557665
6.  Mouthwash Use in General Population: Results from Adult Dental Health Survey in Grampian, Scotland 
ABSTRACT
Objectives
The purpose of this study was to determine the pattern of mouthwash use and to investigate the associated factors in general population.
Material and Methods
An Adult Dental Health Survey was conducted on 3,022 residents of Grampian region of Scotland (adjusted participation rate 58.2%). Participants received a questionnaire consisting of questions on oral health and behavioural factors.
Results
The majority of participants (38.1%) have never used mouthwash, 17.5% used mouthwash less than once a month, 19.4% used mouthwash once every few days and 25.1% used mouthwash daily.
Prevalence of use decreased with age (P < 0.001). Woman were more likely to use mouthwash than men (P = 0.004). Mouthwash use decreased with decrease in the level of deprivation (P < 0.001). Never-smokers were less likely to use mouthwash (40.3%) compared to smokers (53.1%) or those who stopped smoking (46.5%) (P < 0.001). Mouthwash was used by smaller proportion of people drinking alcohol on daily basis (36.6%), than by abstainers (42.2%) (P = 0.012).
There was a positive relationship between flossing or brushing pattern and mouthwash use (P < 0.001). There was statistically significant relationship between mouthwash use and reasons for the last dental visit (P = 0.009).
When compared to healthy individuals, mouthwash was used by higher proportion of people reporting that they had gum disease (P = 0.001), ulcers (P = 0.001), oral infections or swelling (P = 0.002) or other problems (P = 0.025).
Conclusions
Mouthwash use in general population is associated with socio-demographic, health and behavioural factors.
doi: 10.5037/jomr.2010.1402
PMCID: PMC3886070  PMID: 24421979
mouthwashes; oral hygiene; dental plaque; epidemiology; dental health survey; population groups.
7.  Attitudes of general practitioners to prehospital thrombolysis. 
BMJ : British Medical Journal  1994;309(6951):379-382.
OBJECTIVE--To investigate reasons for general practitioners not giving thrombolytic treatment to eligible patients with acute myocardial infarction. DESIGN--Postal questionnaires were sent to 424 general practitioners. SUBJECTS--97 general practitioners who had taken part in the Grampian region early anistreplase trial, 185 whose practices in Scotland were at least 24 km from a district general hospital, and 142 who had attended postgraduate conferences at which thrombolysis had been discussed; 87, 158, and 125 respectively responded. MAIN OUTCOME MEASURES--Answers to questions about readiness to use thrombolytic treatment. RESULTS--Response rate was 87% (370/424). Almost all respondents (350) were convinced of benefits of thrombolysis for acute myocardial infarction, and 277 were convinced that there were additional benefits from its administration in the community at first opportunity. Most doctors working 16 km or more from hospital thought that giving treatment at home would appreciably save time (200/274). Most doctors agreed that they could make time to give thrombolytic treatment (278), and would be willing to record an electrocardiogram (284), and would be able to interpret it (280). Sixty four respondents (17%) reported using thrombolytic treatment in previous year. Among non-users, 150 (49%) were unwilling to use thrombolytic treatment without further training. While many non-users (210 (69%)) were willing to use thrombolytic treatment without encouragement from Department of Health, 184 (60%) were unwilling to use it unless encouraged to do so by their local cardiologist. CONCLUSIONS--The need to become better informed about thrombolysis and lack of encouragement from local cardiologists were important factors preventing wider use of thrombolytic treatment in the community by general practitioners.
PMCID: PMC2541186  PMID: 8081141
8.  'So much post, so busy with practice--so, no time!': a telephone survey of general practitioners' reasons for not participating in postal questionnaire surveys. 
The British Journal of General Practice  1998;48(428):1067-1069.
BACKGROUND: Response rates by general practitioners (GPs) to postal surveys have consistently fallen, compromising the validity of this type of research. If postal survey work is to continue we need to understand GPs' reasons for not participating and respond appropriately. AIM: To investigate GPs' reasons for not responding to postal surveys. METHOD: A qualitative study was carried out to determine GPs reasons for not participating in postal surveys, which were drawn from a telephone survey of 276 non-responders to a postal questionnaire survey. Practitioners' comments were recorded and reasons for their non-response quantified using content analysis. RESULTS: Primary reasons for GPs not replying to the postal survey were that questionnaires had got lost in paperwork (34%), that GPs were too busy for the extra work involved (21%), and that questionnaires were routinely 'binned' (16%). Higher practice workloads, including increased administration, meant that participation in research had become a low priority. GPs provided some suggestions for researchers that would increase their chances of questionnaires being returned. CONCLUSIONS: Researchers need to be aware of the pressures of service general practice and to rationalize the amount of research material sent to GPs. GPs were most likely to respond to postal surveys that had a high interest factor, that involved localized research relevant to general practice, and that incorporated a personalized approach by researchers, including good-quality explanatory information.
PMCID: PMC1410021  PMID: 9624749
9.  Annual assessment of patients aged 75 years and over: general practitioners' and practice nurses' views and experiences. 
BACKGROUND. The new contract for general practitioners, introduced in 1990, required them to offer an annual assessment, or 'health check', to patients aged 75 years or more. AIM. A study was undertaken to collect details of practice organization of these assessments, general practitioners' and practice nurses' experience of assessments, and their views of the value of such assessments. METHOD. A nationwide postal survey of 1000 general practitioners and interview surveys with general practitioners and practices nurses from 150 practices were carried out in 1992. RESULTS. The postal survey yielded a response rate of 69% and the interview survey a practice response rate of 76%. Organization of assessments varied enormously between, and often within, practices with a variety of methods of invitation and assessment instruments being used. Of general practitioners 13% did not use a letter of any sort to invite patients to attend, and many doctors excluded certain patients from assessment, particularly those who were seen regularly or had been seen recently. However, 70% of general practitioners estimated that they had assessed over 60% of their elderly patients in the first year (1990-91). A substantial proportion of assessments were estimated to have been conducted on an opportunistic basis and few practices were doing all the assessments of those aged 75 years and over in the patients' homes. In the majority of practices, the general practitioners and practice nurses were the only personnel carrying out assessments. Only 9% of the doctors and 34% of the nurses interviewed had been specially trained to carry out the assessment; 54% of nurses said they would like more training in this area. Both doctors and nurses reported that the assessments did detect previously unknown problems, although over half of doctors reported that they rarely picked up new mental health problems. Increased referrals to social services as a direct result of the assessments were reported by 63% of doctors. The majority of doctors and nurses reported that routine assessments were useful in providing advice and reassurance to elderly people. Two thirds of doctors said they would continue to offer at least selected groups of their elderly patients routine assessments, even if not contractually obliged to do so. CONCLUSION. The findings suggest that the experiences of the first two years of this activity had convinced some general practitioners that routine assessment of elderly patients is worthwhile. However the increased demand for other services must obviously be met by an increase in resources if the effectiveness of these assessments is not to be undermined.
PMCID: PMC1238898  PMID: 8037981
10.  Biobank research and ethics: the problem of informed consent in Polish biobanks 
Introduction
The dynamic development of biobanks causes some ethical, social, and legal problems. The most discussed problems are obtaining informed consent, especially for future research, from minors and from deceased people. The aim of this article is to present the current standards held by Polish biobanks concerning obtaining a participant's informed consent in some aspects.
Material and methods
Survey was carried out by anonymous questionnaire among 59 institutions which deal with the collecting and storage of human cells and tissues in the year 2008. Twenty four filled-in copies of the questionnaires were sent back (return=41%).
Results
Almost every institution (92%) obtains written consent, but a third of the surveyed institutions (29%) do not obtain consent for the future use of the samples. The majority of the respondents (83%) support the idea of using biological materials for research purposes of a donor who died if he did not leave any written objection to such practices and 46% of respondents stated that biobanks should obtain the consent from the already mature donor who gave their samples as a child.
Conclusions
The practice and rules for obtaining informed consent for the scientific research require improvement. The possibility to use the human materials in the future, conditions for getting access to the data, the possibility of their withdrawal from the database and using the materials and data after the death of the donor should be clearly determined when the informed consent to collect the material is obtained.
doi:10.5114/aoms.2011.25568
PMCID: PMC3258806  PMID: 22291838
biobanks; research ethics; informed consent; genetic collection; management
11.  A survey on informed consent process for epidural analgesia in labor pain in Korea 
Background
There is a legal obligation to explain the procedure and use of epidural analgesia in labor primarily due to the possibility of potential risks and associated complications. The present study details on the survey carried out to ascertain the current status of obtaining informed consent (IC) for explaining the epidural analgesia in labor.
Methods
The present study is based on a survey through a telephone questionnaire that covered all the hospitals in Korea where the anesthesiologists' belonged to and are registered with Korean Society of Anesthesiologists. The questionnaire included questions pertaining to administration of epidural analgesia to a parturient, information on different steps of obtaining an IC, whether patient status was evaluated, when the consent was obtained, and the reasons behind, if the consent had not being given.
Results
A total of 1,434 respondents took part in the survey, with a response rate of 97% (1,434/1,467). One hundred seventy-four hospitals had conducted epidural analgesia on the parturient. The overall rate of obtaining IC for epidural analgesia during labor was 85%, of which only 13% was conducted by anesthesiologists. The rate of evaluating preoperative patient status was 74%, of which 45% was conducted by anesthesiologists. Almost all of the consent was obtained prior to the procedure.
Conclusions
The rate of obtaining IC for epidural analgesia in labor is relatively high (85%) in Korea. However, it is necessary to discuss the content of the consent and the procedure followed for obtaining IC during the rapid progress of labor.
doi:10.4097/kjae.2010.59.1.34
PMCID: PMC2908225  PMID: 20651996
Anesthesiologists; Epidural analgesia; Informed consent; Labor analgesia
12.  The epidemiology of infertility in Aberdeen. 
BMJ : British Medical Journal  1990;301(6744):148-152.
OBJECTIVE--To study the prevalence of infertility, both primary and secondary, outcome of pregnancy, occupation, and uptake of medical services in a total population of women from a geographically defined area. DESIGN--A postal questionnaire survey of an age cohort of women who had completed their fertility, and who were randomly selected from the Grampian Health Board's primary care register. SETTING--Aberdeen city district. SUBJECTS--1024 Women in the age group 46-50, of whom 130 had to be excluded. Of the remaining 894 women, 766 (86%) responded to the questionnaire. MAIN OUTCOME MEASURES--Response to questionnaire on pregnancy history, the length of time taken to become pregnant each time, and whether medical advice had been sought. RESULTS--Among the 766 women contacted, 602 (79%) reported no difficulties in having children, 56 (7%) had chosen not to have children, and the remaining 108 (14%) had experienced infertility, defined as having difficulty in becoming pregnant for more than two years. In total 68 (9%) women had primary infertility, of whom 41 (5%) eventually conceived. Of the 40 (5%) with secondary infertility, 23 (3%) conceived. Overall, 52 (7%) of the population were left with an unresolved problem of infertility. Only 67 (62%) infertile women had made use of hospital services, and a further 8 (7%) had consulted their general practitioners. Among those who conceived there was no difference in the proportion who sought advice compared with those who did not. CONCLUSION--The overall prevalence of infertility was 14%, although half of these women eventually conceived. Primary infertility was more common than secondary infertility. Only 62% of infertile women attended a hospital clinic for treatment of their infertility.
PMCID: PMC1663514  PMID: 2390599
13.  Management practices of hepatitis C virus infected alcoholic hepatitis patients: A survey of physicians 
AIM: To survey gastroenterologists and hepatologists regarding their current views on treating hepatitis C virus (HCV) infected alcoholic hepatitis (AH) patients.
METHODS: A sixteen item questionnaire was electronically mailed to gastroenterologists and hepatologists. A reminder was sent after 2 mo to increase the response rate. Participation of respondents was confidential. Accessing secured web site to respond to the questionnaire was considered as informed consent. Responses received on the secured website were downloaded in an excel sheet for data analysis.
RESULTS: Analyzing 416 responses to 1556 (27% response rate) emails, 57% respondents (56% gastroenterologists) reported HCV prevalence > 20% amongst AH patients. Sixty nine percent often treated AH and 46% preferred corticosteroids (CS). Proportion of respondents with consensus (75% or more respondents agreeing on question) on specific management of HCV infected AH were: routine HCV testing (94%), HCV not changing response to CS (80%) or pentoxifylline (91%), no change in approach to treating HCV infected AH (75%). None of respondent variables: age, specialty, annual number of patients seen, and HCV prevalence could predict respondent to be in consensus on any of or all 4 questions. Further, only 4% would choose CS for treating HCV infected AH as opposed to 47% while treating HCV negative AH.
CONCLUSION: Gastroenterologists and hepatologists believe that AH patients be routinely checked for HCV. However, there is lack of consensus on choice of drug for treatment and outcome of HCV positive AH patients. Studies are needed to develop guidelines for management of HCV infected AH patients.
doi:10.4292/wjgpt.v4.i2.16
PMCID: PMC3644613  PMID: 23667769
Survey; Alcoholic hepatitis; Hepatitis C virus; Alcoholic liver disease
14.  Parental preferences for neonatal resuscitation research consent: a pilot study 
Journal of Medical Ethics  2005;31(12):721-726.
Objective: Obtaining informed consent for resuscitation research, especially in the newborn, is problematic. This study aimed to evaluate parental preferences for hypothetical consent procedures in neonatal resuscitation research.
Design: Mail-out survey questionnaire.
Setting/participants: Randomly selected parents who had received obstetrical or neonatal care at a tertiary perinatal centre.
Main outcome measures: Parental levels of comfort (Likert-type scale 1–6) regarding different methods of obtaining consent in hypothetical resuscitation research scenarios.
Results: The response rate was 34%. The respondents were a group of highly educated women with a higher family income than would be expected in the general population. In terms of results, parents valued the impact the research would have on their baby and the importance of a positive interaction with the physicians conducting the research study. Parents felt most comfortable with prospective consent in the setting of prenatal classes or prenatal visits with a physician, but they were somewhat uncomfortable with prospective consent upon admission to hospital after labour had begun. Parents were uncomfortable with waived consent, deferred consent, and opting out, no matter when during the pregnancy consent was requested.
Conclusion: This pilot study reports parental preferences for prenatal information and consent for such research trials of neonatal resuscitation. A low response rate and potentially skewed demographics of the respondents prevent generalisability of this result. Interview studies should be performed to better determine parental preferences for informed consent in a more representative population.
doi:10.1136/jme.2004.011247
PMCID: PMC1734075  PMID: 16319238
15.  Secondary prevention in coronary heart disease: baseline survey of provision in general practice 
BMJ : British Medical Journal  1998;316(7142):1430-1434.
Objective: To determine secondary preventive treatment and habits among patients with coronary heart disease in general practice.
Design: Process of care data on a random sample of patients were collected from medical records. Health and lifestyle data were collected by postal questionnaire (response rate 71%).
Setting: Stratified, random sample of general practices in Grampian.
Subjects: 1921 patients aged under 80 years with coronary heart disease identified from pre-existing registers of coronary heart disease and nitrate prescriptions.
Main outcome measures: Treatment with aspirin, β blockers, and angiotensin converting enzyme inhibitors. Management of lipid concentrations and hypertension according to local guidelines. Dietary habits (dietary instrument for nutritional evaluation score), physical activity (health practice indices), smoking, and body mass index.
Results: 825/1319 (63%) patients took aspirin. Of 414 patients with recent myocardial infarction, 131 (32%) took β blockers, and of 257 with heart failure, 102 (40%) took angiotensin converting enzyme inhibitors. Blood pressure was managed according to current guidelines for 1566 (82%) patients but lipid concentrations for only 133 (17%). 673 of 1327 patients (51%) took little or no exercise, 245 of 1333 (18%) were current smokers, 808 of 1264 (64%) were overweight, and 627 of 1213 (52%) ate more fat than recommended.
Conclusion: In terms of secondary prevention, half of patients had at least two aspects of their medical management that were suboptimal and nearly two thirds had at least two aspects of their health behaviour that would benefit from change. There seems to be considerable potential to increase secondary prevention of coronary heart disease in general practice.
Key messages Patients with coronary heart disease can benefit from both medical and lifestyle secondary prevention measures This study found that half of patients with coronary heart disease in general practice had at least two missed opportunities for effective medical interventions Nearly two thirds of patients with coronary heart disease in general practice had two or more high risk lifestyle factors that would benefit from change There seems to be plenty of opportunity for improving secondary prevention of coronary heart disease in general practice
PMCID: PMC28543  PMID: 9572757
16.  Patient consent to observation. Responses to requests for written consent in an academic family practice unit. 
Canadian Family Physician  1995;41:1367-1372.
OBJECTIVE: To examine patient rates of consent to observation and response to being asked for written consent. DESIGN: Patients were asked to provide written consent for a supervising physician to observe a resident performing a physical examination, or for both direct observation and videotaping of the visit. After the visit, all patients were interviewed, and patients who had given written consent completed a questionnaire. SETTING: The family practice unit at a teaching hospital affiliated with the University of Toronto. PARTICIPANTS: A representative sample of new and returning patients. MAIN OUTCOME MEASURES: Patient consent to observation or videotaping. RESULTS: Most patients (92.2%) agreed to be observed. Of those asked only for consent to observe, 97.3% agreed. Of those asked for consent to observe and videotape, 85.2% agreed. When specifically asked, 22% of patients who agreed to observation expressed concerns. CONCLUSION: We must devise clear policies and procedures for obtaining patient consent that are both sensitive to patients' concerns and administratively effective.
PMCID: PMC2146340  PMID: 7580386
17.  Bias from requiring explicit consent from all participants in observational research: prospective, population based study 
BMJ : British Medical Journal  2005;331(7522):942.
Objective To evaluate the differences between adults who consent to participate in observational research, and those who do not.
Design Prospective, population based cohort study.
Setting Primary and secondary care throughout Scotland.
Participants 187 adults (aged ≥ 16 years) resident in Scotland at the time of their first diagnosis of a brain arteriovenous malformation in 1999-2002.
Intervention Postal consent form sent via participants' general practitioner.
Main outcome measures Differences between consenters and non-consenters in demographic and clinical features at first presentation, and outcome during follow-up.
Results 111 adults (59%) consented to participate in the study. These consenters were not significantly different from non-consenters in age, sex, or socioeconomic status at first presentation. However, consenters were significantly more likely than non-consenters to present alive and independent, and with a seizure. During follow-up, consenters were significantly more likely to receive interventional treatment. Although consenters' survival was significantly better, they were more likely to have a seizure during follow-up. Presentation with intracranial haemorrhage conferred a higher risk of subsequent haemorrhage when the whole cohort was analysed, but not when it was restricted to consenters.
Conclusions We have found differences between adults who consent to participate in observational records-based research and those who do not, or cannot, consent. Blanket requirements for explicit consent for the use of individuals' identifiable data can bias disease registers, epidemiological studies, and health services research.
doi:10.1136/bmj.38624.397569.68
PMCID: PMC1261192  PMID: 16223793
18.  Continuing educational requirements for general practitioners in Grampian. 
A postal questionnaire about educational requirements achieved an 81% response from all general practitioners in Grampian. A majority of respondents felt that it was important to keep up-to-date and they were setting aside a number of hours per week to do this. Evening meetings, intensive two to three day courses and week long refresher courses were still popular, as was the idea of small groups resourced by a consultant. Newer forms of continuing education, for example, audio and videotape and distance learning were not popular. Journals still remained an important way of keeping up-to-date. These results help in planning the rational use of postgraduate resources for the future.
PMCID: PMC1712007  PMID: 2560002
19.  A study of public opinion on the use of tissue samples from living subjects for clinical research 
Journal of Clinical Pathology  2004;57(2):135-138.
Aims: To assess public opinion on the use of tissue samples from living adults and children for clinical research.
Methods: A questionnaire study of 100 healthy volunteers (100% response rate) from a Newcastle NHS dental practice. The issues investigated were the types of tissues that individuals were prepared to donate for research, the type of research donors would be prepared to consent to, and attitudes to research on children’s tissues.
Results: Eighteen per cent of the participants said that they would not give consent for research to be carried out on their tissues, 50% would not give consent for the donation of a child’s tissues. Only 26% of subjects said that they would give consent for research on genetic cloning compared with 82% for cancer research. Sex differences existed in the responses.
Conclusions: Greater research attention needs to be given to public opinion on the use of tissue from living subjects for medical research to facilitate drafting of new legislation.
doi:10.1136/jcp.2003.9886
PMCID: PMC1770207  PMID: 14747435
living subjects; tissue; clinical research; public opinion
20.  Funeral directors, mortuaries and necropsies: implications for necropsy consent rates and the prevention of infection. 
Journal of Clinical Pathology  1996;49(3):217-222.
AIM: To evaluate the attitudes and experiences of funeral directors in relation to necropsies. METHODS: All 1631 members of the National Association of Funeral Directors were surveyed by postal questionnaire about the purposes of necropsies, the technical and administrative problems associated with necropsied cases and their relations with relatives, mortuaries and pathology departments. RESULTS: In total, 123 funeral directors completed the questionnaire (8% response rate). Workload, proportion of cases necropsied and type of mortuary did not influence answers. Necropsies were considered important for the assessment of treatment outcome, identification of inherited disease and junior pathologist training, but not for medical audit. There was strong support for more education about necropsies. The areas of necropsy practice most frequently discussed with relatives related to concerns about funeral delay and the involvement of the coroner or equivalent authority. Funeral directors occasionally counselled relatives for or against giving necropsy consent. The commonest technical problems associated with necropsies were difficulties in embalming, leakage of body fluids and scalpel penetration in visible areas. Few administrative problems were reported; the commonest was inflexibility in body collection times. There was strong support for a national code of practice to cover relations between funeral directors and mortuaries despite general satisfaction with relations with local pathology departments. CONCLUSIONS: Although the relation among the funeral profession, mortuaries and pathology departments is largely satisfactory, a national code of practice for funeral directors and mortuaries is desirable.
PMCID: PMC500401  PMID: 8675732
21.  Ephedra Use in a Select Group of Adolescent Athletes 
Ephedra-containing dietary supplements are consumed to improve sports performace, but may carry risks of cardiac and neurological adverse events. Little is known of their use by young athletes. Our aim was to determine the prevalence and patterns of ephedra use among high school athletes. An anonymous survey was performed in Rochester, Minnesota on high school athletes who participated in fall sports during 2003-04. Parental consent was obtained for athletes under age 18 years. Surveys were distributed at preparticipation examinations and in- school survey stations. The response rate to the survey was 68.2%, or 311 respondents out of a possible 456 with consent (or 26% of all 1197 athletes eligible prior to the consent process). Seven of 311 (2.3%) respondents used dietary supplements containing ephedra. Only one of seven users (14.3%) knew that the supplements they used contained ephedra. Ephedra use was more common in boys (five) than girls (two). Ephedra use was only found in 17 and 18-year-olds. The most common sports among ephedra users were football, track and field, and weightlifting. This study suggests that Ephedra use was infrequent among the young athletes in this population. However, ephedra users were generally unaware that the dietary supplements they consumed contained ephedra. Users were more likely to participate in football, track and field, and weightlifting. Ephedra users were likely to obtain supplements from their peers, and were largely uninformed of the content of their supplements.
Key PointsEphedra is an herbal stimulant used as an ergogenic aide.Adolescent ephedra users most commonly obtain it from their friends.Adolescent athletes are likely to take ephedra unknowningly.
PMCID: PMC3842141  PMID: 24353458
Ephedrine; sports; supplements; performance enhancement, ergogenic
22.  Has Retail Chicken Played a Role in the Decline of Human Campylobacteriosis?▿  
Between 2001 and 2006, the incidence of human Campylobacter infections decreased by 10 and 27% in Scotland and the Grampian region of Scotland, respectively. Contemporaneous collection and analyses of human and retail-chicken isolates from Grampian were carried out over a 10-week period in 2001 and again in 2006 in order to determine whether the fall in the incidence of human infections was related to the retail-chicken exposure route. Rates of carriage of Campylobacter on chicken carcasses from retail outlets in Grampian in 2001 and 2006 were estimated. Chicken-derived Campylobacter isolates from 2001 (n = 84) and 2006 (n = 105) and human-derived isolates from patients with clinical cases of infection in 2001 (n = 172) and 2006 (n = 119) were typed by multilocus sequence typing. We found no evidence for statistically significant changes in prevalence and counts per carcass. We found by rarefaction that although the degree of diversity in humans tended to be higher than that in chickens, these differences were not significant. The genetic distance between chicken and human isolates from 2001 according to sequence type, clonal complex (CC), or allele composition was not significant, whereas the distances between 2006 isolates at the CC and allele levels were significant. This difference was attributable to a lower proportion of CC-21's being found in retail-chicken isolates from 2006 than in chicken isolates from 2001. We conclude that human exposure to Campylobacter via retail chicken is important and that changes in the population structure of campylobacters in this reservoir need to be taken into account in investigating human infection.
doi:10.1128/AEM.01455-07
PMCID: PMC2223253  PMID: 18065605
23.  Assessing change in chronic pain severity: the chronic pain grade compared with retrospective perceptions. 
BACKGROUND: There is no standard method of measuring change in chronic pain severity. Clinical trials commonly use serial assessment scales, completed at two points in time, to estimate change in pain severity, while clinicians usually ask patients to make a retrospective assessment of change. How the two methods compare is not known. AIM: To assess different methods of measuring change in chronic pain severity, by comparing changes in scores on a serial measure of chronic pain severity using the Chronic Pain Grade (CPG) questionnaire and responders' retrospective perception of change in pain severity. DESIGN OF STUDY: Postal self-completion questionnaires. SETTING: The Grampian region of Scotland. METHOD: Postal questionnaires were sent in March and September 1998 to a random sample of 535 adults with chronic pain, drawn from responders to a postal survey of the region conducted in 1996. RESULTS: Corrected response rates of 87.5% and 90.7% were obtained. Over a six-month period poor levels of agreement were found, with responders' retrospective perceptions mirroring recorded changes in 41.8% of individuals (kappa = 0.081). A low partial correlation coefficient between the two measures (-0.209) was also found. Over a two-year period there were again poor levels of agreement, with responders' retrospective perceptions mirronng recorded changes in 35.2% of individuals (kappa = 0.071). A low partial correlation coefficient (-0.401) was again found. CONCLUSION: There was poor agreement and low correlation between two commonly used methods for assessing change in pain severity over time. This finding has important implications for both service practitioners and researchers.
PMCID: PMC1314266  PMID: 11942442
24.  A survey of infertility practices in primary care in Scotland. 
An 83% response rate was obtained to a postal questionnaire survey of general practitioners (GPs) carried out as part of a national infertility audit in Scotland. This provided information about how GPs are managing infertility and their opinions on 12 suggested criteria for good practice in a primary care setting.
PMCID: PMC1409946  PMID: 9519520
25.  The Knee Clinical Assessment Study – CAS(K). A prospective study of knee pain and knee osteoarthritis in the general population: baseline recruitment and retention at 18 months 
Background
Selective non-participation at baseline (due to non-response and non-consent) and loss to follow-up are important concerns for longitudinal observational research. We investigated these matters in the context of baseline recruitment and retention at 18 months of participants for a prospective observational cohort study of knee pain and knee osteoarthritis in the general population.
Methods
Participants were recruited to the Knee Clinical Assessment Study – CAS(K) – by a multi-stage process involving response to two postal questionnaires, consent to further contact and medical record review (optional), and attendance at a research clinic. Follow-up at 18-months was by postal questionnaire. The characteristics of responders/consenters were described for each stage in the recruitment process to identify patterns of selective non-participation and loss to follow-up. The external validity of findings from the clinic attenders was tested by comparing the distribution of WOMAC scores and the association between physical function and obesity with the same parameters measured directly in the target population as whole.
Results
3106 adults aged 50 years and over reporting knee pain in the previous 12 months were identified from the first baseline questionnaire. Of these, 819 consented to further contact, responded to the second questionnaire, and attended the research clinics. 776 were successfully followed up at 18 months. There was evidence of selective non-participation during recruitment (aged 80 years and over, lower socioeconomic group, currently in employment, experiencing anxiety or depression, brief episode of knee pain within the previous year). This did not cause significant bias in either the distribution of WOMAC scores or the association between physical function and obesity.
Conclusion
Despite recruiting a minority of the target population to the research clinics and some evidence of selective non-participation, this appears not to have resulted in significant bias of cross-sectional estimates. The main effect of non-participation in the current cohort is likely to be a loss of precision in stratum-specific estimates e.g. in those aged 80 years and over. The subgroup of individuals who attended the research clinics and who make up the CAS(K) cohort can be used to accurately estimate parameters in the reference population as a whole. The potential for selection bias, however, remains an important consideration in each subsequent analysis.
doi:10.1186/1471-2474-7-30
PMCID: PMC1435895  PMID: 16542454

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