Counseling Parents of a Child with Meningomyelocele

1983 ◽  
Vol 4 (10) ◽  
pp. 317-321
Author(s):  
Claire O. Leonard
Keyword(s):  
Spina Bifida ◽  
Care Physician ◽  
Treatment Center ◽  
Full Time ◽  
Coordination Of Care ◽  
Prognostic Information ◽  
The Family ◽  
Social Treatment ◽  
Ongoing Support

The primary care physician has an important role in counseling families of children with meningomyelocele and providing ongoing support and coordination of care. A spina bifida treatment center will provide subspecialists in neurology, neurosurgery, orthopedics, urology, physical therapy, occupational therapy, nutrition, social work, and genetics. When the family does not live near a center, the pediatrician may fill many of these roles as well as that of team coordinator himself with the psychosocial and educational issues, as these are often forgotten by the multiple subspecialists seen by these children. The outlook for children with spina bifida is changing rapidly. The evolving medical, educational, and social treatment of individuals with meningronyelocele makes reliable prognostic information unavailable. Intelligence is usually normal and death due to renal insufficiency is extremely rare. A follow-up of surviving patients treated from 1928 to 1951 revealed that more than half were self-sufficient, full-time college students or housewives.7 With the improved outlook today, the majority of affected children can expect to become independent adults.

Sexual Abuse and Rape

1982 ◽  
Vol 4 (3) ◽  
pp. 93-98
Author(s):  
Richard M. Sarles
Keyword(s):  
Sexual Abuse ◽  
Sexually Abused ◽  
Care Physician ◽  
Abused Children ◽  
Standardized Protocol ◽  
Primary Physician ◽  
The Family ◽  
The Common ◽  
Sexually Abused Children

Sexual abuse and rape of children and adolescents are alarmingly common. The primary physician is often the first health care professional with whom the girl and the family come in contact. As such, the clinician must be aware of the common and subtle presentations of sexually abused children. It is imperative that the primary care physician follow a standardized protocol for the treatment, collection of evidence, and follow-up care of these victims and their families.

A Five-Year Outcome of Discharged Chronic Psychiatric Patients

1972 ◽  
Vol 17 (6) ◽  
pp. 433-435 ◽  
Author(s):  
A.K.M. Fakhruddin ◽  
Antony Manjooran ◽  
N.P.V. Nair ◽  
Alfred Neufeldt
Keyword(s):  
Continuity Of Care ◽  
Social Life ◽  
Psychiatric Patients ◽  
Health Clinic ◽  
Full Time ◽  
The Social ◽  
The Family ◽  
Community Mental Health Clinic ◽  
Chronic Psychiatric Patients

A five-year follow-up study was done on five hundred and eight chronic psychiatric patients, discharged from Saskatchewan Hospital, Weyburn in 1963, 1964 and 1965. One hundred and twenty-seven patients died during this period — 105 were over 65 years of age, with a mean age of 78 years, two patients had accidental deaths, and the rest died of normal causes. No patient committed suicide. Fifty-five per cent of the patients continually remained in the community during the five years. Forty-five per cent had one or more admissions and of these 74 per cent spent twelve months or less in the hospital. Fifty-four per cent were readmitted within twelve months after discharge. Twenty per cent of the patients under 65 years of age were employed full-time for forty-eight months or more. Two patients affected the social life of their family and one affected the health of the family. Continuity of care was provided to 80 per cent of the patients by the community mental health clinic. Chronic psychiatric patients can thus be kept in the community, causing minimum liability to the family and the community if continuity of care close to their residences is provided for them.

Sharing Care: The Psychiatrist in the Family Physician's Office

1997 ◽  
Vol 42 (9) ◽  
pp. 960-965 ◽  
Author(s):  
Nick Kates ◽  
Marilyn A Craven ◽  
Anne-Marie Crustolo ◽  
Lambrina Nikolaou ◽  
Chris Allen ◽  
...  
Keyword(s):  
Primary Care ◽  
Family Physicians ◽  
Primary Care Providers ◽  
Care Practice ◽  
Full Time ◽  
Care Providers ◽  
Full Time Equivalent ◽  
High Satisfaction ◽  
The Family

Objective: One way of strengthening ties between primary care providers and psychiatrists is for a psychiatrist to visit a primary care practice on a regular basis to see and discuss patients and to provide educational input and advice for family physicians. This paper reviews the experiences of a program in Hamilton, Ontario that brings psychiatrists and counsellors into the offices of 88 local family physicians in 36 practices. Method: Data are presented based on the activities of psychiatrists working in 13 practices over a 2-year period. Data were gathered from forms routinely completed by family physicians when making a referral and by psychiatrists whenever they saw a new case. An annual satisfaction questionnaire for all providers participating in the program was also used to gather information. Results: Over a 2-year period, 1021 patients were seen in consultation by one full-time equivalent psychiatrist. The average duration of a consultation was 51 minutes, and a family member was present for 12% of the visits. Twenty-one percent of the patients were seen for at least one follow-up visit, 75% of which were prearranged. In addition, 1515 cases were discussed during these visits without the patient being seen. All participants had a high satisfaction rating for their involvement with the project. Conclusions: Benefits of this approach include increased accessibility to psychiatric consultation, enhanced continuity of care, support for family physicians, and improved communication between psychiatrists and family physicians. This model, which has great potential for innovative approaches to continuing education and resident placements, demands new skills of participating psychiatrists.

Adult outcome after treatment of pediatric posterior fossa ependymoma: long-term follow-up of a single consecutive institutional series of 22 patients with more than 5 years of survival

2020 ◽  
Vol 26 (1) ◽  
pp. 22-26 ◽  
Author(s):  
Tryggve Lundar ◽  
Bernt Johan Due-Tønnessen ◽  
Radek Frič ◽  
Petter Brandal ◽  
Paulina Due-Tønnessen
Keyword(s):  
Proton Beam ◽  
Posterior Fossa ◽  
Adjuvant Treatment ◽  
Tumor Control ◽  
Full Time ◽  
Time Work ◽  
Long Term Follow Up ◽  
Long Term Survivors

OBJECTIVEEpendymoma is the third most common posterior fossa tumor in children; however, there is a lack of long-term follow-up data on outcomes after surgical treatment of posterior fossa ependymoma (PFE) in pediatric patients. Therefore, the authors sought to investigate the long-term outcomes of children treated for PFE at their institution.METHODSThe authors performed a retrospective analysis of outcome data from children who underwent treatment for PFE and survived for at least 5 years.RESULTSThe authors identified 22 children (median age at the time of surgery 3 years, range 0–18 years) who underwent primary tumor resection of PFE during the period from 1945 to 2014 and who had at least 5 years of observed survival. None of these 22 patients were lost to follow-up, and they represent the long-term survivors (38%) from a total of 58 pediatric PFE patients treated. Nine (26%) of the 34 children treated during the pre-MRI era (1945–1986) were long-term survivors, while the observed 5-year survival rate in the children treated during the MRI era (1987–2014) was 13 (54%) of 24 patients. The majority of patients (n = 16) received adjuvant radiotherapy, and 4 of these received proton-beam irradiation. Six children had either no adjuvant treatment (n = 3) or only chemotherapy as adjuvant treatment (n = 3). Fourteen patients were alive at the time of this report. According to MRI findings, all of these patients were tumor free except 1 patient (age 78 years) with a known residual tumor after 65 years of event-free survival.Repeat resections for residual or recurrent tumor were performed in 9 patients, mostly for local residual disease with progressive clinical symptoms; 4 patients underwent only 1 repeated resection, whereas 5 patients each had 3 or more resections within 15 years after their initial surgery. At further follow-up, 5 of the patients who underwent a second surgery were found to be dead from the disease with or without undergoing additional resections, which were performed from 6 to 13 years after the second procedure. The other 4 patients, however, were tumor free on the latest follow-up MRI, performed from 6 to 27 years after the last resection. Hence, repeated surgery appears to increase the chance of tumor control in some patients, along with modern (proton-beam) radiotherapy. Six of 8 patients with more than 20 years of survival are in a good clinical condition, 5 of them in full-time work and 1 in part-time work.CONCLUSIONSPediatric PFE occurs mostly in young children, and there is marked risk for local recurrence among 5-year survivors even after gross-total resection and postoperative radiotherapy. Repeated resections are therefore an important part of treatment and may lead to persistent tumor control. Even though the majority of children with PFE die from their tumor disease, some patients survive for more than 50 years with excellent functional outcome and working capacity.

scholarly journals The Family Psychoeducation Fidelity Scale: Psychometric Properties

2020 ◽  
Vol 47 (6) ◽  
pp. 894-900 ◽  
Author(s):  
I. Joa ◽  
J. O. Johannessen ◽  
K. S. Heiervang ◽  
A. A. Sviland ◽  
H. A. Nordin ◽  
...  
Keyword(s):  
Psychometric Properties ◽  
Internal Consistency ◽  
Interrater Reliability ◽  
Review Process ◽  
Trial Registration ◽  
Family Psychoeducation ◽  
Time Points ◽  
The Family ◽  
Fidelity Scale

Abstract This study examined psychometric properties and feasibility of the Family Psychoeducation (FPE) Fidelity Scale. Fidelity assessors conducted reviews using the FPE fidelity scale four times over 18 months at five sites in Norway. After completing fidelity reviews, assessors rated feasibility of the fidelity review process. The FPE fidelity scale showed excellent interrater reliability (.99), interrater item agreement (88%), and internal consistency (mean = .84 across four time points). By the 18-month follow-up, all five sites increased fidelity and three reached adequate fidelity. Fidelity assessors rated feasibility as excellent. The FPE fidelity scale has good psychometric properties and is feasible for evaluating the implementation of FPE programs. Trial registration ClinicalTrials.gov Identifier: NCT03271242.

scholarly journals Oncological evaluation in the perioperative period using cfDNA with BRAF V600E mutation in patients with colorectal cancer

2021 ◽  
Vol 11 (1) ◽  
Author(s):  
Keita Tanaka ◽  
Yoichiro Yoshida ◽  
Teppei Yamada ◽  
Takaomi Hayashi ◽  
Hideki Shimaoka ◽  
...  
Keyword(s):  
Colorectal Cancer ◽  
Perioperative Period ◽  
Radical Resection ◽  
Braf V600e ◽  
Tumor Diameter ◽  
Prognostic Information ◽  
A Prospective Study ◽  
Digital Polymerase Chain Reaction ◽  
The Relationship

AbstractThe detection of circulating cell-free DNA (cfDNA) by liquid biopsy is reported to provide prognostic information in colorectal cancer (CRC). Although the frequency of BRAF V600E mutation in CRC is less than 10%, it is associated with poor responses to conventional chemotherapy. We conducted a prospective study to investigate the relationship between the perioperative mutant allele frequency (MAF) of BRAF V600E and tumor recurrence, and to evaluate the possibility of early detection of recurrence. Among 362 patients who underwent radical resection, cfDNA was extracted from the perioperative blood of 11 CRC patients with BRAF V600E mutation and analyzed using the digital polymerase chain reaction (dPCR) system. The median follow-up time was 22 months, and there were four cases of recurrence. Although there was no correlation between recurrence and the perioperative MAF of BRAF V600E, tumor diameter was correlated with the MAF (p = 0.024), and the MAF increased with time in two patients from whom additional samples were obtained prior to recurrence. In this study, we identified a correlation between the pathological tumor diameter and the MAF, but it was difficult to predict recurrence by measuring cfDNA with BRAF V600E mutation in the perioperative period of radical resection of CRC.

scholarly journals The prognostic value of left ventricular mechanical dyssynchrony in predicting incident atrial fibrillation and ischemic stroke in the general population

2020 ◽  
Vol 41 (Supplement_2) ◽  
Author(s):  
A Saed Alhakak ◽  
S.R Biering-Sorensen ◽  
R Mogelvang ◽  
G.B Jensen ◽  
P Schnohr ◽  
...  
Keyword(s):  
Ischemic Stroke ◽  
General Population ◽  
Mechanical Dyssynchrony ◽  
Left Ventricular ◽  
Composite Outcome ◽  
Prognostic Information ◽  
Left Ventricular Mechanical Dyssynchrony ◽  
Multivariable Adjustment ◽  
Incremental Prognostic Information

Abstract Background Left ventricular mechanical dyssynchrony (LVMD) is a predictor of many cardiovascular outcomes including ventricular arrhythmias. However, the prognostic value of LVMD in predicting incident atrial fibrillation (AF) in participants from the general population is currently unknown. Purpose The aim of this study was to investigate if LVMD can be used to predict AF and ischemic stroke in the general population. Methods A total of 1282 participants (mean age 57±16 years, 42% male) from the general population underwent a health examination including two-dimensional speckle tracking echocardiography. LVMD was calculated as the standard deviation of the regional time-to-peak strain from the three apical views. The primary endpoint was incident AF at follow-up. All participants with known AF and prior stroke at baseline were excluded (n=84). The secondary endpoint consisted of the composite of AF and ischemic stroke. Results During a median follow-up of 16 years, 148 participants (12%) were diagnosed with incident AF and 88 (7%) experienced an ischemic stroke, resulting in 236 (19%) experiencing the composite outcome. The risk of AF increased incrementally with increasing tertile of LVMD, being approximately 2-fold higher in the 3rd tertile as compared to the 1st tertile (HR 1.79; 95% CI (1.22–2.63), p=0.003; figure). LVMD was a univariable predictor of AF with 7% increased risk per 10ms increase in LVMD (per 10ms: HR 1.07; 95% CI (1.03–1.12), p<0.001). The association remained significant even after multivariable adjustment for age, sex, body mass index, hypertension, diabetes, previous ischemic heart disease, systolic blood pressure, diastolic blood pressure, heart rate, smoking, plasma proBNP, left ventricular ejection fraction <50%, global longitudinal strain, left atrial volume index (LAVI) and E/e' (per 10ms increase: HR 1.06; 95% CI (1.01–1.12), p=0.018). LVMD was also a univariable predictor of the composite outcome of AF and ischemic stroke (per 10ms increase: HR 1.07; 95% CI (1.04–1.11), p<0.001). After multivariable adjustment for the same clinical and echocardiographic parameters, LVMD remained an independent predictor of the composite outcome (per 10ms: HR 1.07; 95% CI (1.03–1.11), p=0.001). Additionally, LVMD provided incremental prognostic information with regard to predicting AF as assessed by a significant increase in the net reclassification improvement (NRI) index beyond the CHARGE-AF score (continuous NRI, 0.300; 95% CI, 0.022–0.503). Furthermore, LVMD provided additional incremental prognostic information, when added to both the CHARGE-AF score and the LAVI (continuous NRI, 0.269; 95% CI, 0.004–0.499). Conclusion In a low risk general population, LVMD provides novel prognostic information on the long-term risk of AF and ischemic stroke. In addition, LVMD provides incremental prognostic information beyond the CHARGE-AF score and LAVI in predicting AF in the general population. Funding Acknowledgement Type of funding source: None

scholarly journals COPD Clinical Control: predictors and long-term follow-up of the CHAIN cohort

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Myriam Calle Rubio ◽  
◽  
Juan Luis Rodriguez Hermosa ◽  
Juan P. de Torres ◽  
José María Marín ◽  
...  
Keyword(s):  
Triple Therapy ◽  
Clinical Status ◽  
Airflow Limitation ◽  
Psychological Status ◽  
Prognostic Information ◽  
Clinical Control ◽  
All Cause Mortality ◽  
Long Term Follow Up

Abstract Background Control in COPD is a dynamic concept that can reflect changes in patients’ clinical status that may have prognostic implications, but there is no information about changes in control status and its long-term consequences. Methods We classified 798 patients with COPD from the CHAIN cohort as controlled/uncontrolled at baseline and over 5 years. We describe the changes in control status in patients over long-term follow-up and analyze the factors that were associated with longitudinal control patterns and related survival using the Cox hazard analysis. Results 134 patients (16.8%) were considered persistently controlled, 248 (31.1%) persistently uncontrolled and 416 (52.1%) changed control status during follow-up. The variables significantly associated with persistent control were not requiring triple therapy at baseline and having a better quality of life. Annual changes in outcomes (health status, psychological status, airflow limitation) did not differ in patients, regardless of clinical control status. All-cause mortality was lower in persistently controlled patients (5.5% versus 19.1%, p = 0.001). The hazard ratio for all-cause mortality was 2.274 (95% CI 1.394–3.708; p = 0.001). Regarding pharmacological treatment, triple inhaled therapy was the most common option in persistently uncontrolled patients (72.2%). Patients with persistent disease control more frequently used bronchodilators for monotherapy (53%) at recruitment, although by the end of the follow-up period, 20% had scaled up their treatment, with triple therapy being the most frequent therapeutic pattern. Conclusions The evaluation of COPD control status provides relevant prognostic information on survival. There is important variability in clinical control status and only a small proportion of the patients had persistently good control. Changes in the treatment pattern may be relevant in the longitudinal pattern of COPD clinical control. Further studies in other populations should validate our results. Trial registration: Clinical Trials.gov: identifier NCT01122758.

scholarly journals OP0252 CIRCULATING COLLAGEN TURNOVER MARKERS ARE SPECIFICALLY CHANGED IN VERY EARLY SYSTEMIC SCLEROSIS

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 159.1-159
Author(s):  
R. Dobrota ◽  
S. Jordan ◽  
P. Juhl ◽  
B. Maurer ◽  
M. O. Becker ◽  
...  
Keyword(s):  
Systemic Sclerosis ◽  
Roc Analysis ◽  
Cox Regression ◽  
Classification Criteria ◽  
Full Time ◽  
Research Support ◽  
Type Iii ◽  
Turnover Markers ◽  
Full Time Employee

Background:Timely diagnosis of patients with very early systemic sclerosis (veSSc) is essential for their personalized and optimal management. We hypothesise that changes in serum-based extracellular matrix (ECM) turnover biomarkers are already detectable in patients with veSSc, even before occurrence of specific clinical signs.Objectives:To investigate circulating ECM turnover markers as potential biomarkers for veSSc.Methods:Patients with veSSc, n=42, defined as presence of Raynaud’s syndrome and at least one of puffy fingers, positive antinuclear antibodies or pathological nailfold capillaroscopy, who did not meet any classification criteria for SSc, were compared to healthy controls (HC, n=29). Longitudinal assessment, data and sera collection were conducted by EUSTAR standards. ECM-degradation (BGM, C3M, C4M, C6M) and ECM-formation biomarkers (PRO-C3, PRO-C4, PRO-C5) were measured in serum using ELISA assays. The statistical analyses included Mann-Whitney U, Spearman correlation and ROC analysis. Using Kaplan-Meier plots and univariable Cox regression, we explored if biomarkers can predict progression towards definite SSc (fulfillment of ACR/EULAR criteria or minimum two points increase in the criteria score) during the longitudinal follow-up.Results:Compared to HC, veSSc patients showed a deregulated turnover of type III and IV collagen, with higher degradation (higher C3M, C4M, both p<0.0001 and PRO-C3, p=0.004, Figure 1a, resulting in lower turnover ratios PRO-C3/C3M and PRO-C4/C4M, both p<0.0001). The biglycan degradation biomarker BGM was also higher in veSSc (p=0.006), whereas the degradation biomarker for type VI collagen, C6M, was lower than in HC (p=0.002). In the ROC analysis, biomarkers of type III and IV collagen distinguished between veSSc and HC: C3M, AUC=0.95, p<0.0001; C4M, AUC=0.97, p<0.0001; turnover ratios PRO-C3/C3M, AUC=0.80, p<0.0001; PRO-C4/C4M, AUC=0.97; p<0.0001 (Figure 1b).Median follow up was 4.5 years (range 0.5-7.9 years), mean age was 50±2.2 years, 88% female gender, 24% with puffy fingers, 92% were ANA positive, 64% had an abnormal capillaroscopy, none had organ involvement or skin fibrosis. 14/42 veSSc patients fulfilled the ACR/EULAR classification criteria at follow-up (time to fulfilment of criteria ranged between 0.5 and 6.8 years from inclusion) and in addition, 18/42 veSSc patients gained at least two classification criteria-points. This resulted in 14, respectively 18 progressors for the longitudinal analysis. However, in univariable Cox regression, the baseline levels of the markers did not predict progression over time.Conclusion:ECM turnover is already altered in veSSc patients compared to HC. Biomarkes of type III and IV collagen distinguished between veSSc patients and HC, which may indicate them as potential biomarkers for the detection of veSSc in addition to the established immunological and capillaroscopic criteria.Disclosure of Interests:Rucsandra Dobrota: None declared, Suzana Jordan: None declared, Pernille Juhl Employee of: Nordic Bioscience, Britta Maurer Grant/research support from: AbbVie, Protagen, Novartis, congress support from Pfizer, Roche, Actelion, and MSD, Speakers bureau: Novartis, Mike O. Becker: None declared, Carina Mihai: None declared, Anne-Christine Bay-Jensen Shareholder of: Nordic Bioscience A/S, Employee of: Full time employee at Nordic Bioscience A/S., Morten Karsdal Shareholder of: Nordic Bioscience A/S., Employee of: Full time employee at Nordic Bioscience A/S., Anne Sofie Siebuhr Employee of: Nordic Bioscience, Oliver Distler Grant/research support from: Grants/Research support from Actelion, Bayer, Boehringer Ingelheim, Competitive Drug Development International Ltd. and Mitsubishi Tanabe; he also holds the issued Patent on mir-29 for the treatment of systemic sclerosis (US8247389, EP2331143)., Consultant of: Consultancy fees from Actelion, Acceleron Pharma, AnaMar, Bayer, Baecon Discovery, Blade Therapeutics, Boehringer, CSL Behring, Catenion, ChemomAb, Curzion Pharmaceuticals, Ergonex, Galapagos NV, GSK, Glenmark Pharmaceuticals, Inventiva, Italfarmaco, iQvia, medac, Medscape, Mitsubishi Tanabe Pharma, MSD, Roche, Sanofi and UCB, Speakers bureau: Speaker fees from Actelion, Bayer, Boehringer Ingelheim, Medscape, Pfizer and Roche

Prognostic impact of SYNTAX II score in patients with cardiogenic shock complicating ST-elevation myocardial infarction: analysis of an 10-year all-comers registry

2020 ◽  
Vol 41 (Supplement_2) ◽  
Author(s):  
M Juskova ◽  
P Tasende Rey ◽  
B Cid Alvarez ◽  
B Alvarez Alvarez ◽  
J.M Garcia Acuna ◽  
...  
Keyword(s):  
Myocardial Infarction ◽  
Cardiogenic Shock ◽  
Independent Predictor ◽  
Coronary Intervention ◽  
Prognostic Impact ◽  
Cardiac Events ◽  
Prognostic Information ◽  
St Segment Elevation ◽  
All Cause Mortality

Abstract Background The SYNTAX II score (SS-II) can predict 4-year outcomes in patients with complex coronary artery disease and ST-segment elevation myocardial infarction (STEMI). Nonetheless, the prognostic value of SS-II for a cardiogenic shock (CS) in the setting of STEMI has not been assessed. Purpose This study aimed to investigate the predictive impact of SS-II in patients with CS complicating STEMI undergoing primary percutaneous coronary intervention, and whether SS-II adds prognostic information to predict major adverse cardiac events (MACE) and all-cause death in this population. Methods This prospective cohort study included 1965 consecutive patients with STEMI who underwent primary-PCI between January 2008 and December 2017. The cohort of patients with CS (n=153) was identified and divided into three groups based on SS-II tertiles [SS-II low tertile &lt;38 (n=51), ≥38 SS-II intermediate tertile &lt;47 (n=51), and SS-II high tertile ≥48 (n=51)]. Results Amongst the cohort of patients with CS mean age was 68.4±14.0 years, 69.2% were male and 51.6% presented with anterior STEMI (mean SSII was 45.1±14). In-hospital mortality was significantly higher in the high SS-II tertile (85.7% vs. 38.9% vs 24.4%, p≤0.001) compared with SS-II intermediate and low tertiles. During follow-up (median 2.5 years), SS-II was positively correlated with MACE (89.3% (high SS-II) vs. 52.8% (int SS-II) vs. 42.2% (low SS-II), p≤0.001), and with all-cause mortality (89.3% vs 44.4% vs 26.7%, p≤0.001). The SS-II was also an independent predictor of MACE (HR=1.042, 95% CI: 1.020–1.063, p=0.000) and all-cause mortality during follow-up (HR=1.056, 95% CI: 1.033–1.079, p=0.000) Conclusion In a real-world cohort of patients with STEMI related CS, the SS-II added important prognostic information, being an independent predictor of MACE and all-cause mortality during follow-up. Image 1 Funding Acknowledgement Type of funding source: None

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