Child Neurology (General Pediatric Neurology)

Background: Tuberous sclerosis complex (TSC) is a neurocutaneous syndrome that can present with many disabling neurological symptoms, the most common being seizures. Although it is a chronic systemic syndrome, healthcare utilization and long-term outcome of subjects with TSC are not well defined. The goal of this study was to evaluate the direct cost and long-term outcome of TSC compared to other forms of epilepsy and healthy controls. Methods: Our provincial health care database was interrogated to determine use of medical services by patients with TSC, epilepsy and healthy controls from 1996-2011. Data on demographics, outcomes and health care utilization were analyzed. Results: 1004 TSC, 41,934 with epilepsy and 41,934 controls were identified. The prevalence of TSC was 1/7,872 compared to 1/189 for epilepsy. TSC experienced more hospitalizations, medical visits and prescription drug use, resulting in higher total health care costs. Their most common admission diagnosis was seizures and age at death was significantly lower: 61,3 years old for TSC vs 69,6 and 76,6 years old for epilepsy and controls, (p<0,001). Conclusions: TSC subjects have a significantly higher burden of disease than other subjects with epilepsy. These results stress the need for specialized services in this population through the lifespan.

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Long-term outcome of brief augmented psychodynamic interpersonal therapy for psychogenic nonepileptic seizures: Seizure control and health care utilization

Epilepsia ◽

10.1111/j.1528-1167.2010.02656.x ◽

2010 ◽

Vol 51 (7) ◽

pp. 1169-1176 ◽

Cited By ~ 86

Author(s):

Rebecca Mayor ◽

Stephanie Howlett ◽

Richard Grünewald ◽

Markus Reuber

Keyword(s):

Health Care ◽

Health Care Utilization ◽

Seizure Control ◽

Care Utilization ◽

Term Outcome ◽

Interpersonal Therapy ◽

Long Term Outcome ◽

Psychogenic Nonepileptic Seizures ◽

Nonepileptic Seizures

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Faculty Opinions recommendation of Long-term outcome of brief augmented psychodynamic interpersonal therapy for psychogenic nonepileptic seizures: seizure control and health care utilization.

Faculty Opinions – Post-Publication Peer Review of the Biomedical Literature ◽

10.3410/f.8949956.9509054 ◽

2011 ◽

Author(s):

Roderick Duncan

Keyword(s):

Health Care ◽

Health Care Utilization ◽

Seizure Control ◽

Care Utilization ◽

Term Outcome ◽

Interpersonal Therapy ◽

Long Term Outcome ◽

Psychogenic Nonepileptic Seizures ◽

Nonepileptic Seizures

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Chronic abdominal wall pain: Clinical features, health care costs, and long-term outcome

Clinical Gastroenterology and Hepatology ◽

10.1016/s1542-3565(04)00124-7 ◽

2004 ◽

Vol 2 (5) ◽

pp. 395-399 ◽

Cited By ~ 61

Author(s):

C COSTANZA

Keyword(s):

Health Care ◽

Abdominal Wall ◽

Clinical Features ◽

Health Care Costs ◽

Term Outcome ◽

Long Term Outcome ◽

Abdominal Wall Pain ◽

Chronic Abdominal Wall Pain ◽

Care Costs

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Integration of VA and CMHC Care: Utilization and Long-Term Outcome

Psychiatric Services ◽

10.1176/ps.38.7.735 ◽

1987 ◽

Vol 38 (7) ◽

pp. 735-740

Author(s):

Matthew J. Friedman ◽

Alan N. West ◽

Austen Clark

Keyword(s):

Care Utilization ◽

Term Outcome ◽

Long Term Outcome

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Early Initiation of Anti-TNF is Associated with Favourable Long-term Outcome in Crohn’s Disease: 10-Year-Follow-up Data from the Swiss IBD Cohort Study

Journal of Crohn s and Colitis ◽

10.1093/ecco-jcc/jjz057 ◽

2019 ◽

Vol 13 (10) ◽

pp. 1292-1301 ◽

Cited By ~ 12

Author(s):

Roy Frei ◽

Nicolas Fournier ◽

Jonas Zeitz ◽

Michael Scharl ◽

Bernhard Morell ◽

...

Keyword(s):

Cohort Study ◽

Crohn’S Disease ◽

Crohn's Disease ◽

Rank Test ◽

Optimal Timing ◽

Term Outcome ◽

Long Term Outcome ◽

Medical Visits

Abstract Background and Aims The optimal timing of treatment escalation in Crohn’s disease [CD] remains a challenging issue, and very little is known about its long-term development following early versus late administration of anti-TNF antibodies. The long-term outcome of Swiss CD patients was comparatively assessed in an up to 10-year follow-up, using patients participating in the Swiss Inflammatory Bowel Disease Cohort Study [SIBDCS]. Methods Prospectively collected SIBDCS patient data, including disease history, baseline characteristics at enrolment, and course of disease, were analysed in patients with early versus late [<24 versus ≥24 months after diagnosis] and no anti-TNF treatment. Results A reduced risk of developing bowel stenosis was found in patients who received early anti-TNF treatment. This association was seen in patients overall and also in the subgroups of CD patients without pre-existing complications [Log-rank test: p < 0.001]. Furthermore, osteoporosis and anaemia were observed significantly less frequently in patients who received early anti-TNF treatment, compared with either patients who received treatment late [p < 0.001 and p = 0.046, respectively] or were never [p < 0.001 for both] treated with anti-TNF antibodies. Patients with early anti-TNF administration sought medical consultations significantly less often, including gastroenterologists in private practice [p = 0.017], ambulatory [outpatient] hospital visits [p = 0.038], and a composite of any medical visits [p = 0.001]. The percentage of patients unable to work was lowest for early-anti-TNF–treated patients, in comparison with patients who were treated late or never [3.6% vs 8.8% vs 3.7%, p = 0.016]. Conclusions In CD patients within the SIBDCS, early anti-TNF administration was found to be associated with several indicators of a more favourable long-term outcome.

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Discussions of lifestyle habits as an integral part of care management: a cross-sectional cohort study in patients with established rheumatoid arthritis in Sweden

Rheumatology Advances in Practice ◽

10.1093/rap/rkz039 ◽

2019 ◽

Vol 3 (2) ◽

Cited By ~ 3

Author(s):

Karina Malm ◽

Stefan Bergman ◽

Ann Bremander ◽

Ingrid Larsson ◽

Maria L E Andersson ◽

...

Keyword(s):

Physical Activity ◽

Health Care ◽

Care Management ◽

Postal Questionnaire ◽

Lifestyle Habits ◽

Term Outcome ◽

Cross Sectional ◽

Long Term Outcome ◽

Drinking Habits

Abstract Objectives The primary aim was to determine whether patients with RA recalled having discussions concerning lifestyle habits during their health-care visits. The secondary aim was to study the association between patients' reported lifestyle and their wish to discuss it. Methods A postal questionnaire sent to 1542 eligible patients from the Better Anti-Rheumatic Pharmacotherapy (BARFOT) study included questions on lifestyle habits (physical activity, diet, smoking and alcohol), on whether these were discussed during health-care visits and on whether there was an interest in such discussions. Results A total of 1061 patients (68%) responded [mean age 67 (s.d. 13) years, 73% women]. Half of the patients (49%) recalled discussions on physical activity, and 23% recalled discussions about diet. Those who reported health-enhancing levels of physical activity were more likely to discuss physical activity with their health professionals. Likewise, patients who reported having a non-traditional mixed diet were more likely to discuss diet. Smoking was discussed with 25% of the patients, more often with current smokers than with non-smokers (32 vs 17%; P < 0.001). Alcohol was discussed with 17% of the patients. Of those patients who reported having hazardous drinking habits, 77% had not discussed alcohol use with any health professional. Conclusion Discussions about lifestyle were recalled by half of the patients with established RA. There is a need for improvement, because lifestyle habits may affect the long-term outcome in a chronic disease, such as RA. Patient education concerning lifestyle habits should be an integral part of care management and an interactive process.

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Ethical decision-making for children with neuromuscular disorders in the COVID-19 crisis

Neurology ◽

10.1212/wnl.0000000000009936 ◽

2020 ◽

Vol 95 (6) ◽

pp. 260-265 ◽

Cited By ~ 2

Author(s):

Naomi T. Laventhal ◽

Robert J. Graham ◽

Sonja A. Rasmussen ◽

David K. Urion ◽

Peter B. Kang

Keyword(s):

Health Care ◽

Young Adults ◽

Ethical Decision Making ◽

Neuromuscular Disorders ◽

Respiratory Illness ◽

Standards Of Care ◽

Term Outcome ◽

Long Term Outcome ◽

Children And Young Adults

The sudden appearance and proliferation of coronavirus disease 2019 has forced societies and governmental authorities across the world to confront the possibility of resource constraints when critical care facilities are overwhelmed by the sheer numbers of grievously ill patients. As governments and health care systems develop and update policies and guidelines regarding the allocation of resources, patients and families affected by chronic disabilities, including many neuromuscular disorders that affect children and young adults, have become alarmed at the possibility that they may be determined to have less favorable prognoses due to their underlying diagnoses and thus be assigned to lower priority groups. It is important for health care workers, policymakers, and government officials to be aware that the long-term prognoses for children and young adults with neuromuscular disorders are often more promising than previously believed due to a better understanding of the natural history of these diseases, benefits of multidisciplinary supportive care, and novel molecular therapies that can dramatically improve the disease course. Although the realities of a global pandemic have the potential to require a shift from our usual, highly individualistic standards of care to crisis standards of care, shifting priorities should nonetheless be informed by good facts. Resource allocation guidelines with the potential to affect children and young adults with neuromuscular disorders should take into account the known trajectory of acute respiratory illness in this population and rely primarily on contemporary long-term outcome data.

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