Using same-day diaries from 394 older couples in the Panel Study of Income Dynamics (PSID), this paper develops and explores several new measures of diary quality. Two overarching questions are explored: 1) How do diary quality measures reflecting the data collection process enhance understanding of time use in later life? and 2) How well do same-day diaries from couples match up in terms of husbands’ and wives’ reports of time spent (actively engaged) together? We found a summary measure of diary quality indicated only 13.8% of diaries were lower quality. Lower quality diaries were more likely to be obtained from older adults (ages 70+ vs. 50–69) and first (vs. second) interviews. Joint activities from diaries of lower quality were less likely than those from higher quality diaries to be matched to an activity on a spouse’s same-day diary. However, such a measure did not predict time spent in common activities nor did its inclusion have any effect on predictors of time use. We also found that among activities described as joint by at least one respondent, up to 76% had a matching record in the spouse’s diary. The quality of matches appeared to be quite good, with the majority of matched activities having overlapping times reported by spouses and being described as joint by both spouses. Very similar estimates of joint time were reported by husbands and wives (about 5–5½ hours). Implications of findings for future methodological and substantive investigations are discussed.
Time use; survey methods; data quality
For cancer patients on Phase I trials, one of the most important physician decisions is whether or not patients are deriving benefit from therapy. With an increasing number of cytostatic treatment agents, the criteria to determine patient response to Phase I treatment has become harder to define. Physicians are increasingly looking to patient-reported outcomes (PROs) such as quality of life (QOL) to help evaluate treatment response. Electronic daily diary (EDD) devices can be used by patients to report their QOL over extended periods of time, thereby providing a more accurate picture of how patients are affected by treatment on a daily basis. However, questions remain about how to integrate this patient-reported information into decisions about Phase I treatment. This study investigated how physicians use patients’ daily QOL reports to evaluate patient response to Phase I treatment. Data were collected over a 4-month period from Phase I patients (N = 30) and physicians (N = 3) in an NCI-designated comprehensive cancer center. Patients completed daily QOL reports using EDD devices and physicians were provided with a summary of patients’ QOL before each visit. After the visit, doctors recorded their treatment decision and also rated the importance of four biomedical factors (Toxicity, Imaging, Labs, and Performance Status) and QOL in their treatment decision for that visit. Although physicians rated QOL as being very important in evaluating treatment response, in practice, when predictors of their decisions were analyzed, results showed they relied exclusively on biomedical data (Toxicity, Imaging) to make Phase I treatment decisions. Questions remain about the utility and effective integration of QOL and biomedical data in clinical decision-making processes in Phase I clinical trials.
Patient-Reported Outcomes; Quality of Life; Clinical Trials; Quality of Life; Treatment Decision-Making
Clinical trials are increasingly being designed to collect data directly from patients through the use of paper diaries or electronic diaries (e-diaries). E-diaries can be advantageous over paper diaries, but actual benefits may depend on the particular features of a given e-diary. The objective of this study was to determine which e-diary system features are most important to consider when selecting such a tool.
A 42-question survey was distributed to 295 site coordinators participating in four diabetes clinical trials, using e-diary systems provided by three different vendors. The survey gathered information about the site coordinators' experience with the e-diary system used. Analyses included a comparison of global satisfaction rating scores and individual survey item responses among the different e-diaries utilized and correlation of individual survey items with the global satisfaction rating for each system.
The survey was completed by 131 site coordinators (44% response rate). Mean global satisfaction rating scores varied from 3.4 to 7.2 (p < 0.0001). Individual survey items such as technical problems that cannot be resolved easily, the ability of the help line to fully address problems, and organization and user-friendliness of the e-diary's data management Web site were most closely correlated with the global satisfaction rating. The site coordinators' prior e-diary experience and years of job experience did not significantly correlate with the global satisfaction rating.
This survey highlights features of e-diaries for sponsors to consider in clinical trials, including the importance of minimizing technical problems, assessing vendors' help line capabilities, and choosing an e-diary system with an efficient and user-friendly data-management Web site.
clinical trials; diabetes; electronic diary; patient diary
In psychological research, efforts to capture day-today human experience
traditionally relied on pen-and-paper diaries and questionnaires. Some
current studies, however, incorporate handheld computers, which provide
researchers with many options and advantages in addition to providing
more reliable data. One advantage of using handheld computers is
the programmability of the electronic diary, which, compared to old-fashioned
paper diaries, affords the researchers with a wealth of possibilities. An
important possibility is to construct a built-in mechanism
in the computer-administered questionnaires that would allow transparent
branching, in which question presentation is contingent on participants’ answers
to previous questions. The major hurdle in implementing
such an approach is the limitations of the platform used for
such assessments: inexpensive “low-end” handheld devices. We
propose a high-level specification which enables non-programming
researchers to “branch” their questionnaires without
modifications to the source code in a highly user-friendly fashion, with
backtracking capability and very modest hardware requirements. A finite
state automaton approach was implemented, we believe for the first
time, to create an auto-trigger mechanism for the real-time evaluation
of the conditions. This solution provides our investigators with the
capacity to administer efficient assessments that are dynamically customized
to reflect participants’ behaviors without the need
for any post-production programming.
The aim of this study was to examine barriers to the use of electronic diaries within the clinic setting and to determine outcome differences between patients who used electronic diaries to monitor their progress with summary data feedback and patients who monitored their progress with paper diaries without summary data feedback.
One hundred thirty-four (n=134) chronic pain patients were asked to monitor their pain, mood, activity interference, medication use, and pain location on either a paper or electronic diary immediately before each monthly clinic visit for 10 months. Patients and their treating physicians in the electronic diary group (n=67) were able to observe changes in their ratings while patients using the paper diaries (n=67) had no feedback about their data entry.
Most participants believed that completing pain diaries was beneficial, yet only 23% of patients in the experimental condition felt that the data from the electronic diaries improved their care and less than 15% believed that their doctor made a change in their treatment based on the summary diary information.
In general, treating physicians were positive about the use of electronic diaries, although they admitted that they did not regularly incorporate the summary data in their treatment decision-making either because they forgot or they were too busy. Future studies in understanding barriers to physicians’ and patients’ use of diary data to impact treatment outcome are needed in order to improve care for persons with chronic pain.
Electronic diaries; PDA; chronic pain; treatment helpfulness; barriers; patient satisfaction
Introduction and hypothesis This study aims to measure self-report urinary incontinence questions' reproducibility and agreement with bladder diary.
Methods Data were analyzed from the Reproductive Risk of Incontinence Study at Kaiser. Participating women reporting at least weekly incontinence completed self-report incontinence questions and a 7-day bladder diary. Self-report question reproducibility was assessed and agreement between self-reported and diary-recorded voiding and incontinence frequency was measured. Test characteristics and area under the curve were calculated for self-reported incontinence types using diary as the gold standard.
Results Five hundred ninety-one women were included and 425 completed a diary. The self-report questions had moderate reproducibility and self-reported and diary-recorded incontinence and voiding frequencies had moderate to good agreement. Self-reported incontinence types identified stress and urgency incontinence more accurately than mixed incontinence.
Conclusions Self-report incontinence questions have moderate reproducibility and agreement with diary, and considering their minimal burden, are acceptable research tools in epidemiologic studies.
Reproducibility of results; Sensitivity and specificity; Stress urinary incontinence; Urinary incontinence, classification; Urgency urinary incontinence
To determine how variable stool consistency is in patients with irritable bowel (IBS) and assess the relationship between stool consistency and gastrointestinal symptoms.
Individuals with a physician diagnosis of IBS were recruited by advertisement. Enrollment questionnaires included the Rome III Diagnostic Questionnaire and IBS Symptom Severity Scale. Then 185 patients meeting Rome criteria for IBS rated the consistency (using the Bristol Stool Scale) of each bowel movement (BM) for 90 days and whether the BM was accompanied by pain, urgency, or soiling. Each night they transferred BM ratings from a paper diary to an internet form and also reported the average daily intensity of abdominal pain, bloating, bowel habit dissatisfaction, and life interference of bowel symptoms. Only the longest sequence of consecutive days of diary data was used in analysis (average of 73 days).
Patients were 89% female with average age 36.6 years. 78% had both loose/watery and hard/lumpy stools; the average was 3 fluctuations between these extremes per month. The proportion of loose/watery stools correlated r=.78 between the first and second months and the proportion of hard/lumpy stools correlated r=.85 between months. Loose/watery stools were associated with more BM-related pain, urgency, and soiling than hard/lumpy or normal stools; however, IBS-C patients had significantly more BM-unrelated abdominal pain, bloating, dissatisfaction with bowel habits, and life interference than IBS-D. Questionnaires overestimated the frequency of abnormal stool consistency and gastrointestinal symptoms compared to diaries.
Stool consistency varies greatly within individuals. However, stool patterns are stable within an individual from month to month. The paradoxical findings of greater symptom severity after individual loose/watery BMs vs. greater overall symptom severity in IBS-C implies different physiological mechanisms for symptoms in constipation compared to diarrhea. Daily symptom monitoring is more sensitive and reliable than a questionnaire.
To identify the types, frequency and impact of asthma triggers and the relationship to asthma control among adults with asthma in Europe.
Adults with self-reported physician-diagnosed asthma receiving maintenance asthma treatment and self-reported exposure to known asthma triggers completed an online questionnaire; a subset completed a diary over 3–4 weeks. Information on asthma control (Asthma Control Test™ [ACT]), asthma triggers, frequency of exposure and behaviours in response or to avoid asthma triggers and the perceived impact on daily life was captured. A post-hoc analysis evaluated the impact of high trigger burden on the frequency of severe asthma exacerbations, hospitalisations and days lost at work/study.
A total of 1202 adults participated and 177 completed the diary. Asthma was uncontrolled for the majority (76%) of participants and most (52%) reported exposure to 6–15 asthma triggers. As trigger burden increased, behavioural changes to manage trigger exposure had a significantly increased impact on daily life (p < 0.0001) and job choice (p = 0.002). Participants reporting a high trigger burden (>16) were more likely to report uncontrolled asthma than those with a low trigger burden (1–5). Participants with a high trigger burden had previously experienced on average two more severe asthma attacks during a lifetime (p < 0.001), two more hospitalisations (p < 0.001) and 3.5 more missed days at work or study in the last year due to their asthma (p < 0.001) than those with a low trigger burden.
Adults with asthma reporting a high trigger burden (>16 different triggers) experience more severe asthma attacks than those reporting lower trigger burdens.
Asthma control; asthma triggers; behaviour; exacerbation; hospitalisation; questionnaire; trigger burden
Despite their common use parental diaries of infants' cry and fuss behaviour have not been compared with objective methods of recording. To understand what is meant by the descriptions of crying and fussing in the diaries, the diaries of 10 mothers of 6 week old infants were compared with tape recordings of vocalisations made by the babies over a 24 hour period. There were moderately strong correlations between the frequency of episodes (clusters of 'negative vocalisations') on the audiotape and episodes of 'crying and fussing' in the diaries, and between the duration of episodes on the audiotape and episodes of 'crying' in the diaries. To assess the acceptability of the diaries for recording information for clinical and epidemiological research, they were then used in a population study of a wide socioeconomic group. Usable data were obtained from 91% of the sample. The results suggest that despite pronounced differences between recording methods, these diaries may provide valid and useful reports of crying and fussing in the short term.
Cognitive impairments influence the possibility of persons with dementia to remember daily events and maintain a sense of self. In order to address these problems a digital photo diary was developed to capture information about events in daily life. The device consisted of a wearable digital camera, smart phone with Global Positioning System (GPS) and a home memory station with computer for uploading the photographs and touch screen. The aim of this study was to describe professional caregiver’s perceptions on how persons with mild dementia might experience the usage of this digital photo diary from both a situation when wearing the camera and a situation when viewing the uploaded photos, through a questionnaire with 408 respondents. In order to catch the professional caregivers’ perceptions a questionnaire with the semantic differential technique was used and the main question was “How do you think Hilda (the fictive person in the questionnaire) feels when she is using the digital photo diary?”. The factor analysis revealed three factors; Sense of autonomy, Sense of self-esteem and Sense of trust. An interesting conclusion that can be drawn is that professional caregivers had an overall positive view of the usage of digital photo diary as supporting autonomy for persons with mild dementia. The meaningfulness of each situation when wearing the camera and viewing the uploaded pictures to be used in two different situations and a part of an integrated assistive device has to be considered separately. Individual needs and desires of the person who is living with dementia and the context of each individual has to be reflected on and taken into account before implementing assistive digital devices as a tool in care.
“Ageing in place”; assistive digital device; dementia; factor analysis; perceptions.
To examine diary-based, laboratory-based, and actigraphic measures of sleep in a group of healthy older women and men (≥75 years of age) without sleep/wake complaints and to describe sleep characteristics which may be correlates of health-related quality of life in old age.
Cross-sectional, descriptive study.
University-based sleep and chronobiology program.
Sixty-four older adults (30 women, 34 men; mean age 79)
We used diary-, actigraphic-, and laboratory-based measures of sleep, health-related quality of life, mental health, social support, and coping strategies. We used two-group t-tests to compare baseline demographic and clinical measures between men and women, followed by ANOVA on selected EEG measures to examine first-night effects as evidence of physiological adaptability. Finally, we examined correlations between measure of sleep and health-related quality of life.
We observed that healthy men and women aged 75 and older can experience satisfactory nocturnal sleep quality and daytime alertness, especially as reflected in self-report and diary-based measures. Polysomnography (psg) suggested the presence of a first-night effect, especially in men, consistent with continued normal adaptability in this cohort of healthy older adults. Continuity and depth of sleep in older women were superior to that of men. Diary-based measures of sleep quality (but not psg measures) correlated positively (small to moderate effect sizes) with physical and mental health-related quality of life.
Sleep quality and daytime alertness in late life may be more important aspects of successful aging than previously appreciated. Good sleep may be a marker of good functioning across a variety of domains in old age. Our observations suggest the need to study interventions which protect sleep quality in older adults to determine if doing so fosters continued successful aging.
sleep; successful aging; aging; health-related quality of life
It is well known that physicians' night-call duty may cause impaired performance and adverse effects on subjective health, but there is limited knowledge about effects on sleep duration and recovery time. In recent years occupational stress and impaired well-being among anaesthesiologists have been frequently reported for in the scientific literature. Given their main focus on handling patients with life-threatening conditions, when on call, one might expect sleep and recovery to be negatively affected by work, especially in this specialist group. The aim of the present study was to examine whether a 16-hour night-call schedule allowed for sufficient recovery in anaesthesiologists compared with other physician specialists handling less life-threatening conditions, when on call.
Sleep, monitored by actigraphy and Karolinska Sleep Diary/Sleepiness Scale on one night after daytime work, one night call, the following first and second nights post-call, and a Saturday night, was compared between 15 anaesthesiologists and 17 paediatricians and ear, nose, and throat surgeons.
Recovery patterns over the days after night call did not differ between groups, but between days. Mean night sleep for all physicians was 3 hours when on call, 7 h both nights post-call and Saturday, and 6 h after daytime work (p < 0.001). Scores for mental fatigue and feeling well rested were poorer post-call, but returned to Sunday morning levels after two nights' sleep.
Despite considerable sleep loss during work on night call, and unexpectedly short sleep after ordinary day work, the physicians' self-reports indicate full recovery after two nights' sleep. We conclude that these 16-hour night duties were compatible with a short-term recovery in both physician groups, but the limited sleep duration in general still implies a long-term health concern. These results may contribute to the establishment of safe working hours for night-call duty in physicians and other health-care workers.
Recent increase in the use of diary measures has prompted questions about the effect completing diaries has on participants. After extensive training, married couples completed event-contingent diaries about their couple disagreements for 15 days, focusing on emotional and behavioral aspects of marital conflict. Serving as a control for placebo effects of participation, the diary group (n = 110) and a nonrandomized control group (n = 57) also completed brief daily checklists, with minimal training, over the reporting period. Before and after the reporting period, couples engaged in videotaped conflict resolution tasks that were coded for conflict behaviors and emotions expressed. ANOVAs comparing groups indicated that completing event-contingent diaries for 15 days had no apparent effects on observed husbands' and wives' expressed emotions and behaviors during marital interactions. At the same time, parental reports on the brief daily diaries indicated minimal differences between the groups in global measures of marital functioning. Husbands' self reports in the home indicated decreasing perceptions of marital quality over the recording period, suggesting husbands' reactivity to the diary recording. Thus, although no differences in conflict tactics emerged in the laboratory, self-reports in the home suggest potential reactivity effects.
diary; marital conflict; reactivity
In a study looking at the relationship of life stress events to health status, 500 individuals randomly selected from family practices in Hamilton, Ontario were asked to keep a health diary for three days every two weeks over a two year period. The compliance with diary keeping was remarkably high (85%), partly due to a novel method of reinforcing compliance. The present study involved reviewing these health diaries for symptoms of sore throat during the three month period January to March 1979. Over 2,700 diaries representing 8,148 person/days were reviewed; 48% recorded at least one symptom and 5.2% of all diaries recorded sore throat on at least one day. Eight to 16% of those individuals recording sore throat as a symptom contacted a health professional and/or took prescribed drugs.
Although the group under study included only adults, the low medical contact rate of patients with sore throats raises questions about the effectiveness of any approach to sore throat/pharyngitis adopted in office practice.
Three hundred and sixty-nine patients in an MRC study of combination chemotherapy and radiotherapy for small-cell lung cancer of limited extent were asked to complete a Daily Diary Card which enabled an assessment of their quality of life to be made during and after treatment. The information derived from the card suggests that although cytotoxic chemotherapy has an adverse effect upon quality of life, this impairment only affects the first 2 or 3 days following each course of treatment, although there is also a small deterioration which may be associated with the 'nadir' effect of the blood counts about 10 days after each course. These results should assist physicians in counselling patients about the likely effects of treatment. Just over half of the patients (196) were subsequently randomised to either a further six courses of maintenance chemotherapy or no further chemotherapy, and it is also shown that the patients allocated to no maintenance chemotherapy experienced a gradually deteriorating quality of life, as opposed to the brief but more severe adverse effects which occurred following each course in the maintenance chemotherapy group; this supports the hypothesis of a palliative effect in this latter group. The findings demonstrate that the Daily Diary Card is a sensitive instrument capable of yielding useful information.
Most patients who complain of recurrent headaches have migraine, muscle contraction headache, or both. At a patient's first office visit for headache, the family physician should carry out a physical and neurological examination. The type of headache and factors that can precipitate it may then be explained, and the patient should be advised to take only simple analgesics for pain, as soon as he recognizes the first symptom of headache. A daily diary can help reveal specific factors that precipitate the patient's headaches. He can also benefit from educational material, and be taught relaxation techniques to ease headache pain. At least one follow up office visit is necessary in order to emphasize and review instructions from the previous assessment, and to give the patient an opportunity to consider the explanation and problems and voice any remaining concerns or questions.
The aim of this study was to evaluate a short food frequency questionnaire (FFQ) against a four-day precoded food diary (PFD) with regard to frequency of food intake among Norwegian 9- and 13-year-olds.
Subjects and design
A total of 733 9-year-olds and 904 13-year-olds completed first a short FFQ and one to two weeks later a four-day PFD. The short FFQ included questions about 23 food items, including different drinks, fruits, vegetables, bread, fish, pizza, sweets, chocolate and savoury snacks. The PFD covered the whole diet.
When comparing mean intake from the PFD with comparable food items in the FFQ, all food items showed that increasing intake measured with the PFD corresponded with increasing intake with the short FFQ. However, participants reported a significantly higher frequency of intake for most foods with the short FFQ compared with PFD, except for soft drinks with sugar and sweets. The median Spearman correlation coefficient between the two methods was 0.36 among the 9-year-olds and 0.32 among the 13-year-olds. Often eaten foods such as fruits and vegetables had higher correlations than seldom eaten foods such as pizza and potato chips. The median correlation coefficients for drinks alone were higher (r=0.47) for both age groups.
Results indicate that the short FFQ was able to identify high and low consumers of food intake and had a moderate capability to rank individuals according to food intake. Drinks, fruits and vegetables had better correlations with the PFD than infrequently eaten food items.
short food frequency questionnaire; evaluation; relative validation; children; adolescents
Background and Purpose
Complete information on migraine-related disabilities facilitate the making of appropriate treatment decisions. Although the accessibility and ease of use of the Headache Impact Test-6 (HIT-6) make it a very promising instrument, there are few data available for comparing HIT-6 scores with the actual amount of disability.
To determine whether the disability measured using the HIT-6 questionnaire realistically reflects the amount of disability as extracted from a headache diary, which would help when deciding a management plan, 130 patients with migraine without aura were instructed to complete a headache diary on the days on which headache occurred. Each diary booklet also contained questions on the resulting disability, and comprised five items originating from the Migraine Disability Assessment Scale. After submitting their diaries, the participants completed the HIT-6 for the same time period.
Disability as recorded in diaries was present for a mean of 2.7 days per month, and its duration differed significantly with HIT-6 score: 0.9, 2.6, and 4.6 days per month for littleto-no impact, moderate impact, and severe impact, respectively. The summed disability score from diaries was also related to the HIT-6 score. Headache frequency was the only headache characteristic that contributed significantly to the HIT-6 score.
This study demonstrates that the HIT-6 could be useful for assessing headache-related disability in migraine patients, especially given that the questionnaire is both simple and ease of use.
migraine; disability; Headache Impact Test-6; Migraine Disability Assessment Scale; diary
To compare coital diaries and face‐to‐face interviews (FFIs) in measuring sexual behaviour among women at high risk of HIV. To assess the effect of differing levels of support from researchers on reporting in coital diaries and FFIs.
Three groups of 50 women were randomly selected from a cohort of food and recreational facility workers participating in a microbicide trial feasibility study and received differing levels of researcher support. Minimum support involved delivering and collecting coital diaries weekly; medium support included a weekly FFI and discussion of concerns; intensive support also included an unscheduled mid‐week visit when diaries were checked and concerns addressed. All respondents participated in an exit FFI, including questions on sexual behaviour over the four‐week study period and study acceptability.
Sexual behaviours were generally reported more frequently in coital diaries than weekly or exit interviews. Vaginal and anal sex, male and female condom use, vaginal cleaning and lubrication, sex during menstruation and sex with irregular and regular partners were reported more frequently in coital diaries than exit interviews. In coital diaries, level of support was associated with reporting of vaginal sex and cleaning. In exit interviews, support level was associated with reporting of vaginal sex, vaginal cleaning and sex with regular, irregular and commercial partners. Women with minimum support reported least satisfaction with the research process. Women with intensive support were most likely to report that they informed someone about their study participation and that they completed diaries daily.
Compared with FFIs, coital diaries resulted in higher reporting of socially stigmatised activities, and sexual behaviour reporting varied less by level of support. More researcher support enhanced study acceptability.
sexual behaviour research methods; microbicides; diaries; HIV; developing countries
The purpose of the study is to determine the validity of an original patient symptom diary in recording symptoms of posterior vitreous detachment (PVD).
In this prospective cohort study, all patients presenting to the Hotel Dieu hospital emergency eye clinic between September 2008 and July 2009 diagnosed with acute PVD were offered enrollment in the study. Patients were given the Queen’s University posterior vitreous detachment patient diary at the initial visit after detailed eye examination, assessment of risk factors for retinal tears and detachments and a thorough explanation of their presenting complaints to record their symptoms related to PVD. At a random point during their six-week follow up, the patients were verbally asked the same questions being recorded in the diary over the phone. At the six-week follow up visit, the diaries were collected and the verbal results were compared with the written results.
There was substantial to near perfect agreement between the verbal questions and written answers. Cohen’s kappa scores for flash frequency, flash intensity, floater frequency, and floater type were 0.6229, 0.6389, 0.6495, and 0.8603, respectively.
The Queen’s University posterior vitreous detachment patient diary is a useful tool for investigating the quantity, quality and change in symptoms of patients presenting with PVD in the first 6 weeks of initial presentation.
Cohen’s kappa; Inter-rater agreement statistics; Krippendorff’s alpha; Posterior vitreous detachment; Symptom diary; Validation
Chemotherapy-induced nausea and vomiting (CINV) are major adverse effects of cancer chemotherapy. This study investigated: (1) the impact of CINV on patients' health-related quality of life (HRQL) in daily clinical practice; (2) the association between patient characteristics and type of antiemetics and CINV; and (3) the role of CINV in physicians' decisions to modify antiemetic treatment.
Patients and methods
This prospective, multicenter study was conducted in nine general hospitals in the Netherlands. During three consecutive chemotherapy cycles, patients used a diary to record episodes of nausea, vomiting and antiemetic use. For each cycle, these ratings were made 1 day prior to and 7 days after having received chemotherapy. The influence of CINV on patients' HRQL was evaluated with the Functional Living Index-Emesis (FLIE) questionnaire at day 6 of each treatment cycle. (Changes in) antiemetic use were recorded by the treating nurse. Patient inclusion took place between May 2005 and May 2007.
Two hundred seventy-seven patients were enrolled in the study. Acute and delayed nausea during the first treatment cycle was reported by 39% and 68% of the patients, respectively. The comparable figures for acute and delayed vomiting were 12% and 23%. During the first and subsequent treatment cycle, approximately one-third of the patients indicated that CINV had a substantial impact on their daily lives. Female patients and younger patients reported significantly more CINV than male and older patients. At all treatment cycles, patients receiving treatment with moderately emetogenic chemotherapy, containing anthracycline, reported more acute nausea than patients receiving highly emetogenic chemotherapy. Acute vomiting was associated significantly with change in (i.e., additional) antiemetic treatment. Delayed CINV did not influence antiemetic treatment.
CINV continues to be a problem that adversely affects the daily lives of patients. CINV is worse in women and in younger patients. In daily clinical practice, acute CINV, but not delayed CINV, results in changes in antiemetic treatment. In view of the effects of not only acute, but also delayed CINV on daily life, more attention should be paid to adjustment of antiemetic treatment to cover CINV complaints, later during the chemotherapy cycle.
Chemotherapy-induced nausea and vomiting; Antiemetics; Symptom management
To understand the impact of Crohn’s disease (CD) on various aspects of daily life from the perspective of patients living with CD. Awareness of the disease and biologic therapies, patient satisfaction and adherence, and physician (provider) relationships were also assessed.
CD is a chronic, inflammatory, autoimmune disorder of the gastrointestinal tract that substantially impacts patients’ physical and emotional well-being. For patients eligible for biologic therapy, anti-tumor necrosis factor agents represent an important addition to the available therapies for CD.
The study sample included biologic-naïve and biologic-experienced patients who had self-reported moderate to severe CD, were under the care of a specialist, and agreed to film a video diary and participate in a focus group. Data from the videos and group interviews were collected from May to June of 2009 and summarized qualitatively by grouping similar answers and quotations.
Of the 44 participants who submitted video diaries, 23 were biologic-experienced and 21 were biologic-naïve. Participants stated that CD caused fear and embarrassment, that they were reluctant to share the full impact of CD with family and providers, and that they relied on their provider for treatment decisions. Many participants accepted a new state of normalcy if their current medication helped their most bothersome symptoms without providing sustained remission. Participants receiving biologic therapy generally were more informed, more satisfied, and more likely to adhere to treatment regimens.
Participants’ responses suggest a need for more patient education and more collaborative relationships between patients and providers (physicians) regarding treatment decisions.
Crohn’s disease; patient perspective; quality of life
Objectives—The study was performed in order to investigate how end-of-life decisions are influenced by cultural and sociopolitical circumstances and to explore the compliance of doctors with patient wishes
Participants and measurement—Five hundred and thirty-five physicians were surveyed in Sweden (Umeå), Germany (Rostock and Neubrandenburg), and in Russia (Arkhangelsk) by a questionnaire. The participants were recruited according to availability and are not representative. The questionnaire is based on the one developed by Molloy and co-workers in Canada which contains three case vignettes about an 82-year-old Alzheimer patient with an acute life-threatening condition; the questionnaire includes different levels of information about his treatment wishes. We have added various questions about attitudes determining doctors' decision making process (legal and ethical concerns, patient's and family wishes, hospital costs, patient's age and level of dementia and physician's religion).
Results—Swedish physicians chose fewer life-prolonging interventions as compared with the Russian and the German doctors. Swedish physicians would perform cardiopulmonary resuscitation (CPR) in the event of a cardiac arrest less frequently, followed by the German doctors. More than half the Russian physicians decided to perform CPR irrespective of the available information about the patient's wishes. Level of dementia emerged as the most powerful determining attitude-variable for the decision making in all three countries.
Conclusions—The lack of compliance with patient wishes among a substantial number of doctors points to the necessity of emphasising ethical aspects both in medical education and clinical practice. The inconsistency in the treatment decisions of doctors from different countries calls for social consensus in this matter.
Key Words: End-of-life decision • DNR order • advance directive • physicians • cross-cultural comparison • survey
Though urinary incontinence (UI) is a bothersome condition for the individual patient, the patients tend not to inform their physician about UI and the physician tend not to ask the patient. Recently different initiatives have been established in Danish general practices to improve the management of UI. The aim of this study was to identify the handling of urinary incontinence (UI) in Danish general practices after distribution of clinical guidelines and reimbursement for using a UI diary.
In October 2001, a questionnaire was sent to 243 general practitioners (GPs) in Frederiksborg County following distribution of clinical guidelines in July 1999 (UI in general practice) and September 2001 (UI in female, geriatric, or neurological patients). A policy for a small reimbursement to GPs for use of a fluid intake/voiding diary in the assessment of UI in general practice was implemented in October 2001. Information concerning monthly reimbursement for using a voiding diary, prescribed drugs (presumably used for treating UI), UI consultations in outpatient clinics, and patient reimbursement for pads was obtained from the National Health Service County Registry.
Of the 132 (54%) GPs who replied, 87% had read the guidelines distributed 2 years before, but only 47% used them daily. The majority (69%) of the responding GPs had read and appreciated 1–3 other UI guidelines distributed before the study took place. Eighty-three percent of the responding GPs sometimes or often actively asked their patients about UI, and 92% sometimes or often included a voiding diary in the UI assessment. The available registry data concerning voiding diary reimbursement, prescribed UI drugs, UI consultations in outpatient clinics, and patient reimbursement for pads were insufficient or too variable to determine significant trends.
GPs management of UI in a Danish county may be reasonable, but low response rate to the questionnaire and insufficient registry data made it difficult to evaluate the impact of different UI initiatives.
BACKGROUND--Quality of life (QOL) is commonly measured in asthma clinical trials by a questionnaire given before and after treatment. A structured asthma QOL daily diary provides more restricted information but on a daily basis. The validity and use of such a QOL diary was examined in a clinical trial in which two asthma treatments were compared. METHODS--The effects of low dose inhaled steroid (400 micrograms beclomethasone dipropionate, BDP) combined with the long acting beta 2 agonist salmeterol (100 micrograms) (n = 220) was compared with high dose inhaled steroid (1000 micrograms BDP) (n = 206) in asthmatic outpatients in a double blind, parallel group study. Outcome measures consisted of a combined diary for peak expiratory flow (PEF) rate, symptoms, and problems, and an asthma-specific QOL questionnaire, the Living with Asthma Questionnaire. RESULTS--The QOL diary correlated with the QOL questionnaire for both cross sectional and longitudinal assessments. Cross sectional correlations with PEF were higher for the QOL questionnaire than the QOL diary, but longitudinal correlations with PEF were higher for the diary than the questionnaire. Treatment with low dose steroid/salmeterol compared with high dose steroid produced better lung function, better QOL as measured by diary, and reduced night time wakenings, but treatment differences were not obtained with the QOL questionnaire nor for daytime symptoms. Diary assessed QOL was a better predictor of low PEF than diary assessed symptoms. Compliance with diary completion was good but there were floor or ceiling effects in the QOL diary records of about 25% of patients. CONCLUSIONS--Structured QOL diaries are valid instruments that appear to be more responsive to longitudinal change in clinical trials than a QOL questionnaire, but QOL questionnaires provide a more sensitive cross sectional measure of disease severity. Floor and ceiling effects are found in some patients' QOL diaries which limit their usefulness. QOL diary problem events occur during the troughs of a peak flow graph, while symptoms are more widely distributed with respect to peak flow.