Statement of the American Society of Clinical Oncology: genetic testing for cancer susceptibility, Adopted on February 20, 1996.

As the leading organization of physicians who treat people with cancer, the American Society of Clinical Oncology (ASCO) recognizes that cancer specialists must be fully informed of the range of issues involved in genetic testing for cancer risk. The newly discovered and still developing ability to identify individuals at highest risk for cancer holds the promise of improved prevention and early detection of cancers. It also poses potential medical, psychological, and other personal risks that must be addressed in the context of informed consent for genetic testing. ASCO firmly believes that any physician who offers genetic testing should be aware of, and able to communicate, the benefits and limits of current testing procedures, and the range of prevention and treatment options available to patients and their families. For these reasons, ASCO endorses the following principles: ASCO affirms the role of clinical oncologists in documenting a family history of cancer in their patients, providing counseling regarding familial cancer risk and options for prevention and early detection, and recognizing those families for which genetic testing may serve as an aid in counseling. To the greatest extent possible, genetic testing for cancer susceptibility should be performed in the setting of long-term outcome studies. ASCO endorses the formulation and implementation of a national cooperative study/registry with appropriate confidentiality to define the clinical significance of mutations in known cancer susceptibility genes. ASCO is committed to providing educational opportunities for physicians concerning methods of quantitative cancer risk assessment, genetic testing, and pre- and post-test genetic counseling so that oncologists may more responsibly integrate genetic counseling and testing into the practice of clinical and preventive oncology. Oncologists must assure that informed consent has been given by the patient as an integral part of the process of genetic predisposition testing, whether such testing is offered on a clinical or research basis. ASCO recommends that cancer predisposition testing be offered only when: 1) the person has a strong family history of cancer or very early age of onset of disease; 2) the test can be adequately interpreted; and 3) the results will influence the medical management of the patient or family member. As clinical testing becomes more widely available, the Society encourages oncologists to utilize laboratories committed to the validation of testing methodologies, and to facilitate families' participation in long-term outcome studies. ASCO recommends that oncologists include in pre- and post-test counseling discussion of possible risks and benefits of cancer early detection and prevention modalities, which have presumed but unproven efficacy for individuals at the highest hereditary risk for cancer. ASCO endorses efforts to strengthen regulatory authority over laboratories that provide cancer predisposition tests that will be utilized to inform clinical decisions. These regulatory requirements should include appropriate oversight of the products used in genetic testing, interlaboratory comparisons of reference samples, as well as quality control mechanisms. ASCO endorses all efforts including legislation to prohibit discrimination by insurance companies or employers based on an individual's inherited susceptibility to cancer. All individuals at hereditary risk for cancer should have access to appropriate genetic testing and associated medical care, which should be covered by public and private third-party payers. ASCO endorses continued support of patient-oriented research to analyze the psychological impact of genetic testing of at-risk populations.

Download Full-text

Benign paroxysmal vertigo of childhood: Long-term outcome

Cephalalgia ◽

10.1177/0333102410382797 ◽

2010 ◽

Vol 31 (4) ◽

pp. 439-443 ◽

Cited By ~ 31

Author(s):

Benjamin Krams ◽

Bernard Echenne ◽

Julie Leydet ◽

François Rivier ◽

Agathe Roubertie

Keyword(s):

Patient Outcome ◽

Complete Recovery ◽

Homogeneous Condition ◽

Term Outcome ◽

Long Term Outcome ◽

Family Medical History ◽

History Of ◽

Attacks Of Vertigo ◽

Epidemiological Link

Introduction Benign paroxysmal vertigo (BPV) is characterized by recurrent attacks of dizziness in a healthy child. Complete recovery typically takes place during childhood, and an epidemiological link with migraine has been pointed out. Nevertheless, data concerning long-term patient outcome are scarce. Subjects and methods We analyzed the clinical data of 17 patients diagnosed with BPV between 1991 and 2008 in our neuropediatric department; we particularly focused on family medical history and long-term patient outcome by reviewing their medical files and by interviewing the families with a standardized questionnaire administered by phone. Results Thirteen families responded to the questionnaire, performed 1.1 to 24.5 years after onset. Among 10 patients older than 11 years of age, five continue to suffer attacks of vertigo. Median age at recovery was six years. Nine subjects exhibited migraine, including all six aged 15 years or older. There was a first-degree history of migraine in eight out of 13 children. Conclusion BPV may not be a homogeneous condition, as some children have a poorer prognosis than others. The strong link with migraine, already noticed by previous authors, led us to discuss the pathophysiology of this condition.

Download Full-text

The natural history of glycogen storage disease types VI and IX: Long-term outcome from the largest metabolic center in Canada

Molecular Genetics and Metabolism ◽

10.1016/j.ymgme.2014.09.005 ◽

2014 ◽

Vol 113 (3) ◽

pp. 171-176 ◽

Cited By ~ 43

Author(s):

Anne Roscher ◽

Jaina Patel ◽

Stacy Hewson ◽

Laura Nagy ◽

Annette Feigenbaum ◽

...

Keyword(s):

Natural History ◽

Glycogen Storage Disease ◽

Storage Disease ◽

Glycogen Storage ◽

Term Outcome ◽

Long Term Outcome ◽

History Of

Download Full-text

Abstract TP366: National Institutes of Health Stroke Scale (NIHSS) is a Potent Predictor of Outcome in Acute Intracerebral Hemorrhage

Stroke ◽

10.1161/str.47.suppl_1.tp366 ◽

2016 ◽

Vol 47 (suppl_1) ◽

Author(s):

Suzie Kazaryan ◽

Nerses Sanossian ◽

David S Liebeskind ◽

Sidney Starkman ◽

Marc Eckstein ◽

...

Keyword(s):

Intracerebral Hemorrhage ◽

Strong Predictor ◽

Final Diagnosis ◽

Term Outcome ◽

Long Term Outcome ◽

Acute Cerebral Ischemia ◽

History Of ◽

Acute Intracerebral Hemorrhage ◽

Ich Score

Background: Although the NIHSS is a well-validated tool in assessing neurological deficit and predicting long-term outcome in acute cerebral ischemia, its utility in ICH has not been extensively studied. As NIHSS is routinely obtained in cases of stroke prior to imaging, it is often available in ICH patients to potentially assist physicians in triage, prognostication, and risk-adjustment. Methods: We analyzed consecutive patients enrolled in the NIH Field Administration of Stroke Therapy-Magnesium (FAST-MAG) phase 3 trial whose final diagnosis was ICH. Trained study nurses performed the NIHSS in the Emergency Department (ED) shortly after arrival and the modified Rankin Scale (mRS) at 90 days. Primary outcomes were disability or death (mRS 3-6) and mortality. Candidate potential predictor variables, including NIHSS, ICH Score, and GCS, those with threshold of p<0.10 were candidate parameters for backward selection logistic regression to determine independent predictors of disability or death and of mortality. Results: Among the 384 ICH patients, age was mean 65 (±13); female 34%; race white 78%, black 10%, Asian 10%; Hispanic ethnicity 33%; and history of hypertension 78%. The ED NIHSS and GCS was performed a median 148 minutes (IQR 121-180) after last known well. Initial NIHSS was median 16 (IQR 9-16), GCS 15 (IQR 10-15), and ICH Score 1(IQR 0-2). NIHSS correlated with ICH Score (r=0.780) and GCS (r=0.860). At 90 days, median mRS was 4 (IQR 2-6), disability or death (mRS 3-6) was present in 70%, and mortality occurred in 26%. In predicting disability or death at 90 days, c statistics were: NIHSS 0.81, ICH Score 0.81, and GCS 0.72. NIHSS≥14 showed 72% sensitivity and 75% specificity. For mortality by 90 days, c statistics were: NIHSS 0.78, ICH Score 0.80, and GCS 0.73. NIHSS≥19 had 80% sensitivity and 70% specificity. On multivariate analysis age (OR 1.07, 95%CI 1.04-2.0) and NIHSS (OR 1.18, 95%CI 1.13-1.23) were independent predictors of disability and death. Conclusions: The initial NIHSS is a strong predictor of disability and death and good predictor of mortality after intracerebral hemorrhage, performing as well as the ICH Score and better than the GCS. Consideration should be given to routine performance and documentation of the NIHSS in ICH patients.

Download Full-text

Relevance of Family History of Suicide in the Long-Term Outcome of Bipolar Disorders

The Journal of Clinical Psychiatry ◽

10.4088/jcp.v68n1007 ◽

2007 ◽

Vol 68 (10) ◽

pp. 1517-1521 ◽

Cited By ~ 17

Author(s):

Soledad Romero ◽

Francesc Colom

Keyword(s):

Family History ◽

Bipolar Disorders ◽

Term Outcome ◽

Long Term Outcome ◽

History Of

Download Full-text

Long-Term Outcomes After Reversible Cerebral Vasoconstriction Syndrome

Stroke ◽

10.1161/strokeaha.119.027703 ◽

2020 ◽

Vol 51 (2) ◽

pp. 670-673 ◽

Cited By ~ 4

Author(s):

Rosalie Boitet ◽

Solène de Gaalon ◽

Claire Duflos ◽

Grégory Marin ◽

Jérôme Mawet ◽

...

Keyword(s):

Thunderclap Headache ◽

Reversible Cerebral Vasoconstriction Syndrome ◽

Long Term Outcomes ◽

Term Outcome ◽

Long Term Outcome ◽

Follow Up Study ◽

Cerebral Vasoconstriction ◽

History Of

Background and Purpose— We aimed to further investigate the long-term outcomes after reversible cerebral vasoconstriction syndrome (RCVS). Methods— A longitudinal follow-up study was conducted in 173 RCVS patients. Results— Of the 172 patients who completed a mean follow-up of 9.2±3.3 years, 10 had a recurrent RCVS that was benign in all. Independent predictors of relapse were having a history of migraine and having exercise as a trigger for thunderclap headache during initial RCVS. After new delivery, the rate of postpartum RCVS was 9%. Conclusions— Overall, long-term outcome after RCVS is excellent.

Download Full-text

The Natural History Of The Overactive Bladder Ana Detrusor Overactivity. A Review Of The Evidence Regarding The Long-Term Outcome Of The Overactive Bladder

The Journal of Urology ◽

10.1097/01.ju.0000050305.05345.40 ◽

2003 ◽

Vol 169 (3) ◽

pp. 843-848 ◽

Cited By ~ 38

Author(s):

STEPHEN GARNETT ◽

PAUL ABRAMS

Keyword(s):

Natural History ◽

Overactive Bladder ◽

Detrusor Overactivity ◽

Term Outcome ◽

Long Term Outcome ◽

History Of

Download Full-text

The Natural History of Untreated Dorsal Wrist Ganglia and Patient Reported Outcome 6 Years after Intervention

Journal of Hand Surgery (European Volume) ◽

10.1016/j.jhse.2007.05.007 ◽

2007 ◽

Vol 32 (5) ◽

pp. 502-508 ◽

Cited By ~ 49

Author(s):

J. J. DIAS ◽

V. DHUKARAM ◽

P. KUMAR

Keyword(s):

Surgical Excision ◽

Patient Reported Outcome ◽

Postal Questionnaire ◽

Term Outcome ◽

Long Term Outcome ◽

Treatment Groups ◽

Patient Reported ◽

History Of ◽

Term Benefit

We have evaluated the long-term outcome of excision, aspiration and no treatment of dorsal wrist ganglia prospectively in 236 (83%) of 283 patients who responded to a postal questionnaire at a mean of 70 months. The resolution of symptoms was similar between the treatment groups ( p>0.3). Pain and unsightliness improved in all three treatment groups. The prevalence of weakness and stiffness altered only slightly in all three treatment groups. More patients with a recurrent, or persistent ganglion complained of pain, stiffness and unsightliness ( p<0.0001). Patient satisfaction was higher after surgical excision ( p<0.0001), even if the ganglion recurred. Twenty-three of 55 (58%) untreated ganglia resolved spontaneously. The recurrence rate was 58% (45/78) and 39% (40/103) following aspiration and excision, respectively. Eight out of 103 patients had complications following surgery. In this study, neither excision nor aspiration provided significant long-term benefit over no treatment.

Download Full-text

Association of Family History of Psychosis with Long-term Outcome in Schizophrenia – the Northern Finland Birth Cohort 1966 Study

European Psychiatry ◽

10.1016/s0924-9338(15)31856-3 ◽

2015 ◽

Vol 30 ◽

pp. 230

Author(s):

J. Käkelä ◽

J. Koskela ◽

P. Juola ◽

M. Isohanni ◽

J. Veijola ◽

...

Keyword(s):

Family History ◽

Birth Cohort ◽

Term Outcome ◽

Long Term Outcome ◽

History Of

Download Full-text

Incidence of Post-Thrombotic Syndrome Following Asymptomatic Thrombosis in Survivors of Childhood Acute Lymphoblastic Leukemia.

Blood ◽

10.1182/blood.v110.11.1631.1631 ◽

2007 ◽

Vol 110 (11) ◽

pp. 1631-1631

Author(s):

Stefan Kuhle ◽

Maria Spavour ◽

Jacqueline Halton ◽

Patricia Massicotte ◽

Irene Cherrick ◽

...

Keyword(s):

Acute Lymphoblastic Leukemia ◽

Lymphoblastic Leukemia ◽

Term Outcome ◽

Long Term Outcome ◽

Group I ◽

Arm Circumference ◽

History Of ◽

Group Ii

Abstract BACKGROUND: Asymptomatic deep venous thrombosis (DVT) are well-known complications of treatment of acute lymphoblastic leukemia (ALL) in children. However, the clinical significance of radiographically detected, asymptomatic DVT is unclear and controversial, as there are no studies on long-term outcome of asymptomatic DVT in children available. There are two likely reasons for the studies not being done in this area. First, there is a lack of defined cohorts of pediatric patients screened for DVT and secondly, there is a great deal of difficulty in following patients over many years. The study, Prophylaxis with Antithrombin Replacement in Kids with ALL treated with L-Asparaginase (PARKAA) was a multicentre randomized controlled trial in which children with ALL were screened for DVT. As survivors of childhood cancer, the PARKAA cohort continues to be followed in their respective centers. Therefore, establishment of the PARKAA cohort (1997–99) and the ability to locate these patients provided a unique opportunity to study the long-term outcome of asymptomatic DVT. OBJECTIVE: To assess the incidence of PTS in children with ALL who previously had an asymptomatic DVT. The objective were approached in two ways. Firstly, to assess the outcome of asymptomatic DVT by determining the prevalence of PTS in children with a history of ALL with radiographically diagnosed DVT (PARKAA cohort); secondly, to corroborate the findings by determining the prevalence of PTS in an unselected group of survivors of childhood ALL. METHODS: Cross-sectional study in two separate populations: Group I comprised of children enrolled in the PARKAA multicentre study who had been screened for, and diagnosed with, DVT in the upper venous system. Group II consisted of non-selected patients < 21 years with a history of ALL followed at Stollery Children’s Hospital, Edmonton. Patients were invited for a follow-up at their treatment centre (Group I) or were assessed for PTS childhood cancer survivor clinic (Group II). PTS was assessed by two of the investigators (Group I) or by the attending oncologist (Group II), respectively, using a standardized scoring sheet. RESULTS: Group I: 13 PARKAA patients with a history of ALL and objectively diagnosed DVT were assessed for PTS (4 males; median age 11.9 years; median age at diagnosis of ALL 4.4 years). 7/13 patients had PTS (54%, 95%CI 25;81). All patients with PTS had collaterals on examination, 3 also had increased arm circumference. Group II: 41 patients with a history of ALL were enrolled (61% males; median age at diagnosis 3.0 years; 28% high-risk, 67% standard risk). Mean length of follow-up since diagnosis was 9.5 years. PTS was diagnosed in 10/41 (24%; 95%CI 11–38) patients. All patients with PTS had collaterals on examination, 5 (50%) also had increased arm circumference. CONCLUSIONS: There is a clinically significant prevalence of PTS in children with a history of ALL and radiographically diagnosed DVT. A significant proportion of survivors of ALL develop PTS, indicating previously undiagnosed DVT in this population.

Download Full-text