Search

BACKGROUND Although the majority of adolescent and young adult (AYA) patients with cancer desire prognostic information, to the authors' knowledge little is known regarding how preferences for prognostic communication change over time. METHODS The current study was a longitudinal, prospective, questionnaire-based cohort study of 136 AYA patients with cancer who were aged 15 to 29 years and who were treated at a large academic cancer center. Previously published scales were administered at the time of diagnosis and at 4 months and 12 months after diagnosis. RESULTS The majority of patients reported that prognostic information was very/extremely important at the time of diagnosis (85%), at 4 months (96%; P = .002 compared with baseline), and at 12 months (81%; P = .02 compared with baseline). Few patients reported that prognostic knowledge was very/extremely upsetting at baseline (7%), at 4 months (9%; P = .44 compared with baseline), or at 12 months (11%; P = .27 compared with baseline). The majority of patients were satisfied with the amount of prognostic information received throughout the year after diagnosis (81%, 86%, and 81%, respectively, at the time of diagnosis, at 4 months, and at 12 months). This percentage did not change between the time of diagnosis and 4 months (P = .16) or between diagnosis and 12 months (P = 1.00). In multivariable analysis, satisfaction with prognostic information received was associated with patient report of high-quality communication (odds ratio, 2.67; 95% CI, 1.38-5.17) and having a >75% chance of cure (odds ratio, 2.39; 95% CI, 1.24-4.61) after adjustment for patient age category, race/ethnicity, and time point of administration. CONCLUSIONS The majority of AYA patients with cancer were satisfied with prognostic disclosure over time, but a sizeable minority wanted additional information. Desire for prognostic information increased over time. Clinicians should return to prognostic discussions over time to support AYA patients with cancer.

Introduction: Myotonic dystrophy (DM) is a chronic, multisystemic, neurological condition. Patients and caregivers are uniquely suited to identify what symptoms are most important and highlight the unmet needs that are most relevant to DM. Methods: We conducted a North American, cross‐sectional study of people with DM type‐1, congenital DM, and DM type‐2 and their family members. We sent patients and caregivers separate surveys to identify and quantitate the issues of greatest importance, examine the differences between groups, and identify the most important challenges experienced by this population. Results: 1,180 people with DM and 402 family members/caregivers responded to the surveys. They reported considerable physical and cognitive symptoms, extensive diagnostic delays, and varying clinical phenotypes on the basis of DM type. Discussion: Marked disease burden and numerous unmet needs exist in DM. These needs vary based on DM type and highlight the complex clinical phenotypes of these neurological disorders. Muscle Nerve 59:457–464, 2019

To determine patient knowledge of the nature of their pain management in the ED.This was a planned sub-study of data collected during a randomised, controlled trial of the nature of the informed consent process in a single ED. Patients aged ≥18 years, with a triage pain score of ≥4, were enrolled. Forty-eight hours post-ED discharge, patients were asked if they had declined analgesia or if a range of pain management options had been administered. The primary outcome was discordance between the patient report and the ED report (proportion of cases where these reports differed).Outcome data were collected on 655 patients. There was significant discordance for all variables examined (P 0.001). Discordance for patients declining analgesia was lowest at 8.9% (95% confidence interval [CI] 6.8-11.4). Discordance for administration of pain management 'other' than analgesia was highest at 32.6% (95% CI 29.0-36.4). Discordance for the administration of oral analgesia or 'any' analgesia was 17.1% (95% CI 14.3-20.3) and 14.4% (95% CI 11.8-17.3), respectively. For both of these outcomes, patients with chest pain and lower triage pain scores were more likely to report discordant responses. With the exception of 'other' pain management, smaller proportions of patients incorrectly reported not receiving management than incorrectly reporting that they did receive it.Patients are often unaware of the nature of their pain management. They are most often unaware of management other than analgesia. Patients with chest pain and lower triage pain scores had the least knowledge of their pain management.

Objective The present study aims to determine the agreement between paramedic and ED or hospital working diagnosis in dyspnoeic patients. Methods Non-consecutive written patient report forms were retrospectively audited for patients suffering from dyspnoea, who were transported to a tertiary hospital ED by ambulance paramedics. Accuracy of the paramedic working diagnosis was assessed by comparing agreement with either the primary or secondary ED diagnoses or hospital discharge diagnosis. Results The study cohort was 293 patients. Exact agreement between paramedic versus ED or hospital diagnosis was 64%, 95% CI 58–69, k = 0.58, 95% CI 0.52–0.64. Only 226 (77%) had a ‘clearly documented’ paramedic diagnosis. Among these, agreement with either ED or hospital diagnosis was 79%, and there was a trend towards more agreement as paramedic level of practice increased (74%, 78% and 87% for Basic, Intermediate and ALS paramedics, respectively, P = 0.07). Conversely, ALS paramedics were less likely to document a working diagnosis (30/98, 31%) compared with Intermediate (22/102, 23%) and BLS paramedics (15/93, 16%), P = 0.008. Diagnostic agreement varied according to medical condition, from anaphylaxis (100%) and asthma (86%) to acute pulmonary oedema (46%). Conclusions There was moderate agreement between paramedic and ED or hospital diagnosis. The number of cases with no clearly documented working diagnosis suggested that a singular working diagnosis may not always serve the complexity of presentation of some dyspnoea patients: more open descriptors such as ‘mixed disease’ or ‘atypical features’ should be encouraged.

Background Previous studies have found that adults with intellectual disabilities (ID) are hospitalised more often than the general population (GP). This study investigates hospital discharge rates and main diagnostic causes for hospitalisation among administratively defined people with ID compared with the GP in Norway. Method Data from the Norwegian Labour and Welfare Service was combined with data from the Norwegian Patient Register (Ntotal = 1 764 072 and NID = 7573) for the period 2008–2011. Data from a Norwegian patient report generator and Statistics Norway are also analysed. Results During the study period, 11% of people with ID and 11.5% of the GP were admitted to hospitals. The length of the average hospital stay was just over 4 days for both groups. Among those who were hospitalised, the majority were only admitted to hospital once during the study period: ID 66% and GP 70%. People with ID were admitted somewhat more often than people in the GP. Contrary to the GP, adults with ID were more frequently hospitalised at a younger age and less frequently at old age. The most common International Classification of Diseases diagnostic group for hospitalisation among people with ID is injury, poisoning and certain other consequences of external causes, whereas for the GP, it is diseases of the circulatory system. Conclusion This study finds that the proportion of people being hospitalised per year is statistically, but only slightly, different among adult people with ID and the GP. The results must be interpreted in light of the organisation of the health care system in Norway.

Aims The primary objectives were to describe the rate of repeat surgery for stress urinary incontinence (SUI) after release of an obstructing synthetic mid-urethral sling (MUS) and to evaluate the effect of time from sling placement to sling release on repeat surgery rates. The secondary objective was to assess rates of recurrent and persistent SUI. Methods This is a retrospective review of women who underwent synthetic MUS release (incision or excision of segment of sling) from 2005–2013. SUI rates and repeat surgery were ascertained by patient report and urinary distress inventory (UDI-6) questionnaire responses. Data analysis included descriptive statistics and multivariable logistic regression analysis. Results 107 patients were included. Median time to sling release was 22 months (IQR 5–49 months). 43.2% were transobturator slings. 15/107 patients (14%) underwent repeat surgery for SUI. On multivariable analysis, women were significantly less likely to undergo repeat surgery for SUI when sling release was performed >24 months after initial sling surgery (OR 0.12, 95% CI 0.02–0.85, P = 0.03) compared to release within 3 months. 49% and 77% reported recurrent and persistent SUI after sling release, of which 83% were significantly bothered. Conclusion The repeat surgery rate for SUI was 14%. The rate of recurrent SUI was 49%. Most of these women were significantly bothered. On multivariate analysis, longer interval to sling release was associated with decreased likelihood of repeat surgery for SUI. The reason for a low repeat surgery rate for SUI despite a high rate of bothersome SUI should be explored in future studies. Neurourol. Urodynam. © 2015 Wiley Periodicals, Inc.

Aims To evaluate patient-reported outcomes and continence rates 5 years after the tension-free vaginal tape (TVT) operation and to compare these with subjective and objective cure rates. Methods A total of 101 patients underwent clinical and urodynamic assessment and completed the Incontinence Outcome Questionnaire (IOQ) 5 years after the retropubic TVT operation. The IOQ results were compared with the subjective and objective cure rates. Results At 5 years 85% of patients had a negative clinical stress test. Based on clinical stress test, stable cystometry to ≥300 ml and residual volume ≤100 ml, the physician assessment of cure was 80%. Patient-reported outcome showed improvement in incontinence symptoms in 86% of patients. Eighty-three percent of patients were satisfied with the results and 92% would recommend the operation to others. The results of the IOQ correlated more with patient-reported than with physician-assessed cure rates. Conclusion Patient report high rates of satisfaction 5 years after the TVT operation. Neurourol. Urodynam. Neurourol. Urodynam. 30: 1512–1517, 2011. © 2011 Wiley Periodicals, Inc.

This clinical report demonstrates the history of a patient with progressive periodontal deterioration and illustrates how prosthodontic treatment has evolved over time. In 1974, maxillary and mandibular telescopic porcelain-fused-to-gold fixed prostheses and a semi-precision maxillary distal-extension removable partial denture represented leading edge technology. Over time, a gradual deterioration in the patient's intraoral condition occurred secondary to chronic, inflammatory periodontal disease, failed appointments, and recurrent caries. Prosthodontic treatment was also evolving. The patient's teeth were extracted and ultimately replaced with two implant-supported fixed prostheses. This clinical report is one example of how patients continually benefit from continued research in biology and materials science.

Background and Purpose The efficacy of interventions for headache is often based on patient estimates of the headache parameters of frequency, intensity and duration, which can be ascertained from interview, by questionnaire or from a headache diary. The aim of the present study was to test the accuracy of retrospective patient reports of headache frequency, intensity and duration, with respect to measures derived from a daily headache diary. Method Forty participants suffering from least one headache per month completed a daily headache diary for four weeks. At the end of the four-week period participants completed a questionnaire requiring them to estimate the frequency, usual duration and usual intensity of their headaches. Spearman rank correlation coefficients were calculated to determine the relationship between diary and questionnaire data. Results Correlation coefficients (Spearman's rho) for questionnaire and diary data for headache frequency and duration were 0.80 and 0.72, respectively, whereas that for intensity was 0.51. Conclusions The findings suggest that when compared with the use of a headache diary, patient estimations of headache frequency and duration by questionnaire are reasonably accurate. Headache intensity appears to be more difficult to remember and report, possibly because of the multidimensional nature of pain, as opposed to the temporal characteristics of frequency and duration. It is recommended that frequency and duration be preferred over intensity as outcome measures if questionnaires or retrospective reports are used. Copyright © 2004 Whurr Publishers Ltd.

Objectives: To compare proxy perceptions about change over 6 months in physical, instrumental, affective, and cognitive functioning of older persons with computed change in patient self-report and performance and patient's own perceptions about change. Design: Prospective study. Setting: Recovery from hip fracture that occurred in community-dwelling persons in Baltimore, Maryland, in 1990–91. The recovery from the sixth to the 12th month postfracture was observed. Participants: One hundred forty-one hip fracture patients aged 65 and older and a self-designated proxy for each. Measurements: For specific tasks of physical and instrumental functioning, proxy perception of change over the previous 6 months asked in the 12th month postfracture was compared with change in criterion measures (subject self-report and observed performance) from the sixth to the 12th month postfracture. For global change over the previous 6 months in each area of functioning, proxy perception was compared with the subject's own perception in the 12th month postfracture. Results: Agreement between proxy perceptions of change and change in criterion measures was poor. There was a general pattern for proxies to overstate improvement and understate deterioration in comparison with change observed in criterion measures for specific tasks of physical and instrumental functioning. Proxies' global perceptions reported subjects improving less and deteriorating more than patients' own perceptions. Conclusion: Proxy perceptions about task-specific and global changes in subjects' functional health over a short period of time are systematically different from patient report and observed performance.

Thirty-four cases of benign osseous proliferation beneath the pontics of mandibular posterior fixed partial dentures have been reported in the dental literature. This report describes subpontic osseous hyperplasia in the posterior regions of five additional patients. Within this population, recurrence following surgical excision was documented in one patient. Continued osseous proliferation following pontic modification occurred in a second patient. Chronic irritation and functional stresses are discussed as possible etiologies. Clinical significance and treatment considerations are presented.

Finding current and relevant data from the various information technology systems throughout a hospital can be a time consuming and tedious. Patient demographics, diagnosis, laboratory results and medication use data are stored across many different information systems and these must all be accessed individually. A report was designed to bring all the information together and, after a trial period, was introduced to our clinical pharmacists. Further enhancements have been made to flag abnormal laboratory results and patients receiving warfarin. The report also calculates an estimated creatinine clearance for every patient based on their most recent serum creatinine concentration and ideal body weight. The report has reduced the amount of time pharmacists spend retrieving patient information.

2 periodontal dressings, Coe-pak and RD8 (a product under development), were assessed following periodontal surgery, using a double-blind study of randomised split-mouth design, with each patient acting as their own control. Matched sites were selected for periodontal flap surgery under local analgesia. Sites were randomly allocated to each group. The dressings were applied by a single operator and both patients and clinical assessors were blind as to the dressing employed. The dressings were assessed as to their handling properties, in addition to a 7-day post-operative assessment of the surgical sites and a subjective patient report. Maximum pain levels were relatively low (4 in a scale 0-10); subjects reported more pain and analgesics required with RD8 than with Coe-pak. This was reflected in the results of the patient assessment which indicated that 50% preferred Coe-pak, compared to 25% who preferred the RD8 dressing. The results showed RD8 to be an acceptable periodontal dressing when compared to Coe-pak. There were no statistically significant differences between treated sites in both groups with regard to post-operative plaque scores, bleeding scores or tissue healing.

Objective: The investigators sought to determine the most sensitive indicator for identifying a swallowing problem in patients with HNC who are treated with radiotherapy—patient-report of dysphagia or diet level consumed.Method: Data were taken from 113 HNC patients. Prevalence of dysphagia was determined by patient report and diet level, then broken out by gender and age. A web-based survey of clinical practice included 759 SLPs who work with HNC patients. Referral patterns and time of first intervention were queried.Results: Over the first year, prevalence of dysphagia was 8% to 20% higher (worse) by diet restriction than by report of a swallowing problem. Men reported a worse swallowing problem and more diet restrictions than did women (P = .057). Patients younger than 60 years reported worse diet levels and diet restrictions than did older patients (ns). The survey found that 70.6% of SLPs reported no institutional policy, with referrals made on a case by case basis. The prevalent trend (nearly 50%) w...

The patients with the typical clinical course and pathology of Mycosis Fungoides (MF) were found also to have Hodgkin's Disease (HD), nodular sclerosing type. In two cases, HD was diagnosed 2 years after the diagnosis of MF; in the third case, both diseases were diagnosed simultaneously. Previous claims of MF transforming into second lymphomas are reviewed. The possible significance of our observed association of MF and HD is discussed.

A comprehensive system has been developed to quantitatively analyze standard M-mode pediatric echocardiograms. It utilizes relatively inexpensive hardware together with a telephone coupling to a time-sharing computer. A complete patient report on the study is printed out upon completion, and all the data are digitally stored for future research computations. Initial and operating costs for this system are significantly less than for any comparable one available.

A case of chronic lymphocytic leukemia and Hodgkin's disease occurring simultaneously in the same patient is reported. Complete replacement of lymphatic organs by lymphatic leukemia and Hodgkin's granuloma was found on postmortem examination. The clinical picture was that of a Coombs' negative acute wasting syndrome presumably resulting from profound depletion of immunologically competent lymphocytes. The authors emphasize that unexplained fever, development of lymphopenia, reversion of a reactive PPD and the development of Coombs' negative acute wasting syndrome in chronic lymphocytic leukemia should call attention to Hodgkin's disease complicating chronic lymphocytic leukemia.