Quality of Medical Follow-Up of Young Women with Turner Syndrome Treated in One Clinical Center

TPS154 Background: Approximately 30% of patients will have ≥pT3 disease and/or positive surgical margins at radical prostatectomy (RP), indicating a high risk of local recurrence. While current guidelines recommend consideration of adjuvant radiotherapy (aRT) in this setting, < 10% undergo aRT. The Decipher assay is a novel, tissue-based genomic classifier (GC) developed and validated in the post-RP setting as a predictor of metastasis. Current retrospective evidence suggests that patients with a high GC score may benefit from aRT, while observation may be safe for those with a lower GC score. However, there are no randomized prospective data evaluating the clinical utility of biomarkers in men with adverse features after RP. Here we see to determine the impact of GC test results on adjuvant treatment decisions for high-risk post-RP patients vs. clinical factors alone. Methods: Genomics in Michigan ImpactiNg Observation or Radiation (G-MINOR) is a 4-year (12-month enrollment, 3-year follow-up) prospective, cluster-crossover, unblinded, study of 350 subjects from twelve Urology practices in the Michigan Urological Surgery Improvement Collaborative (MUSIC). MUSIC is a physician-led quality improvement consortium nearly all academic and community urology practices within the state of Michigan. Each clinical center participating in this trial will be randomly assigned to either a Genomic Classifier (GC)-based strategy or control arm for a period of 3 months. Patients in both arms will receive a predicted risk of recurrence based on a validated clinical nomogram, the CAPRA-S score, enabling a head-to-head comparison of the Decipher assay with a freely-available validated prognostic tool. Random assignments will be generated centrally by a study statistician and provided to centers immediately before commencing enrollment in each 3-month period. Each center will have two GC and two UC enrollment periods, maintaining study-wide balance and blinding of assignments in subsequent periods. Patients will be followed for receipt of adjuvant therapy as well as oncologic (recurrence, metastasis, and death) and patient-reported quality of life. Clinical trial information: NCT02783950.

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Turner syndrome in Albania and the efficacy of its treatment with growth hormone

Journal of Pediatric Endocrinology and Metabolism ◽

10.1515/jpem-2014-0350 ◽

2015 ◽

Vol 28 (11-12) ◽

Cited By ~ 1

Author(s):

Petrit Hoxha ◽

Anila Babameto-Laku ◽

Gentian Vyshka ◽

Klodiana Gjoka ◽

Dorina Minxuri ◽

...

Keyword(s):

Growth Hormone ◽

Turner Syndrome ◽

Body Height ◽

Delayed Puberty ◽

Genetic Characteristics ◽

Female Patients ◽

Albanian Population ◽

The Moment

AbstractThe aim of this study was the evaluation of Turner syndrome inside the Albanian population, its clinical, cytological and genetic characteristics, the accompanying pathologies, and the efficacy of the treatment with the growth hormone. We performed a retrospective analysis of 59 patients suffering from this syndrome (aging from 5 to 23 years old). The diagnosis of female patients suffering from Turner syndrome is delayed, with a mean age at the moment of diagnosis of 13.74 years (5–23 years). The main reason for seeking medical advice was the growth retardation or a delayed puberty. Available data for 52 patients showed that the most frequent accompanying pathologies were the following: thyroid autoimmune disorders (59%), cardiovascular anomalies (43%), renal pathologies (41%), hearing impairment (4.3%) and hypertension (3.3%). Follow-up for the growth rate was possible for 52 patients out of the total of 59 patients. Twenty-five of the female patients suffering Turner syndrome and forming part of our study sample were treated with growth hormone for a period averaging 3 years and 4 months. A variety of reasons was identified as responsible for the missed treatment in 27 patients. We saw an enhanced growth (in terms of body height) within the treated subgroup, when compared with the untreated subgroup (27 patients), especially during the first 3 years of the follow-up. No side effects of this treatment were reported. Both groups of patients initiated as well a sexual hormone therapy (estrogens and progesterone) for inducing puberty at the age of 12 years. Further work is needed for an early diagnosis of this syndrome, the prompt treatment with growth hormone and the monitoring of accompanying disorders. This will ensure a better quality of life and an improvement of the longevity of patients suffering from the Turner syndrome.

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Health status, quality of life and medical care in adult women with Turner syndrome

Endocrine Connections ◽

10.1530/ec-18-0053 ◽

2018 ◽

Vol 7 (4) ◽

pp. 534-543 ◽

Cited By ~ 6

Author(s):

Diana-Alexandra Ertl ◽

Andreas Gleiss ◽

Katharina Schubert ◽

Caroline Culen ◽

Peer Hauck ◽

...

Keyword(s):

Quality Of Life ◽

Medical Care ◽

Turner Syndrome ◽

Reference Population ◽

Care Quality ◽

Study Cohort ◽

Adult Women ◽

Adult Care

Background Previous studies have shown that only a minority of patients with Turner syndrome (TS) have adequate medical care after transfer to adult care. Aim of this study To assess the status of medical follow-up and quality of life (QoL) in adult women diagnosed with TS and followed up until transfer. To compare the subjective and objective view of the medical care quality and initiate improvements based on patients’ experiences and current recommendations. Methods 39 adult women with TS out of 64 patients contacted were seen for a clinical and laboratory check, cardiac ultrasound, standardized and structured questionnaires (SF-36v2 and Beck depression inventory). Results 7/39 of the patients were not being followed medically at all. Only 2/39 consulted all the specialists recommended. Comorbidities were newly diagnosed in 27/39 patients; of these, 11 related to the cardiovascular system. Patients in our cohort scored as high as the mean reference population for SF-36v2 in both mental and physical compartments. Obese participants had lower scores in the physical function section, whereas higher education was related to higher physical QoL scores. Adult height slightly correlated positively with physical health. Conclusion Medical follow-up was inadequate in our study cohort of adults with TS. Even though their medical follow-up was insufficient, these women felt adequately treated, leaving them vulnerable for premature illness. Initiatives in health autonomy and a structured transfer process as well as closer collaborations within specialities are urgently needed.

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Health-Related Quality of Life in Turner Syndrome and the Influence of Growth Hormone Therapy: A 20-Year Follow-Up

The Journal of Clinical Endocrinology & Metabolism ◽

10.1210/jc.2019-00340 ◽

2019 ◽

Vol 104 (11) ◽

pp. 5073-5083 ◽

Cited By ~ 2

Author(s):

Emily Krantz ◽

Kerstin Landin-Wilhelmsen ◽

Penelope Trimpou ◽

Inger Bryman ◽

Ulla Wide

Keyword(s):

Quality Of Life ◽

Turner Syndrome ◽

Reference Population ◽

World Health ◽

Health Related Quality ◽

Gh Treatment ◽

Related Quality ◽

Health Related

Abstract Context The factors that affect the health-related quality of life (HRQoL) of women with Turner syndrome (TS) are controversial. Objective The aim was to describe the HRQoL of women with TS with a focus on how given GH treatment and comorbidity influence HRQoL in adulthood and to compare HRQoL of women with TS with that of women in the general population. Design Longitudinal cohort study, up to 20 years. Setting The Turner Center at the Section for Endocrinology and Department of Reproductive Medicine at Sahlgrenska University Hospital, Gothenburg, Sweden. Participants Women with TS (n = 200), age range 16 to 78 years, were included consecutively and monitored every fifth year between 1995 and 2018. Women from the World Health Organization MONItoring of trends and determinants for CArdiovascular disease project were used as reference populations. Interventions and Main Outcome Measures HRQoL was measured using the Psychological General Well-Being index and the Nottingham Health Profile. Associations with somatic variables were assessed using longitudinal linear regression models. Results HRQoL was not associated with GH treatment in TS in spite of a mean 5.7 cm taller height. HRQoL was only associated with height per se in one of 13 subscales (P < 0.01). HRQoL was negatively affected by higher age, higher age at diagnosis, and hearing impairment in TS. Women with TS reported a similar HRQoL to the reference population. Conclusions No association between previous GH treatment and HRQoL was found during the up to 20 years of follow-up in women with TS. HRQoL of women with TS and the reference population was similar.

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Measuring quality of life in patients with heart failure

Srpski arhiv za celokupno lekarstvo ◽

10.2298/sarh0510412t ◽

2005 ◽

Vol 133 (9-10) ◽

pp. 412-416 ◽

Cited By ~ 1

Author(s):

Zorica Terzic ◽

Vesna Bjegovic ◽

Jelena Marinkovic ◽

Gordana Draganic ◽

Branimir Ljubic ◽

...

Keyword(s):

Quality Of Life ◽

Heart Failure ◽

Social Connections ◽

Clinical Center ◽

Patients With Heart Failure ◽

Heart Failure Questionnaire ◽

Costs Of Treatment ◽

Heart Disorders

INTRODUCTION The quality of life in patients with heart failure is diminished by symptoms of disease, affected social connections, frequent hospitalizations, side effects caused by medication, and costs of treatment borne by the patient himself. OBJECTIVE The objective of this research was to measure the quality of life of patients with heart failure and assess any potential changes during a six-month period. METHOD This research is a follow-up study, and comprised 56 patients who were treated from September 1998 to August 1999 at the Institute for Cardiovascular Diseases of The Clinical Center of Serbia. During the first hospitalization, an initial baseline measurement of quality of life was conducted. The measurement was then repeated after three and six months, during check-ups. The measurement was conducted by using a special questionnaire for patients suffering from heart disorders, the "Minnesota Living with Heart Failure Questionnaire." RESULTS The results showed a considerable improvement in the overall quality of life between the baseline and seeable improvement in the physical dimension of quality of life between the baseline and first measurements (F=6.797; p=0.016) and between the baseline and second measurements (F=5.351;p=0.030). CONCLUSION Thanks to the application of the special Minnesota questionnaire, it was possible to measure small but considerable changes in the patients? quality of life.

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Lipid profile in a group of patients with Turner’s syndrome at Clínica Universitaria Bolivariana in the Medellín city between 2000 and 2009*

Colombia Medica ◽

10.25100/cm.v42i1.751 ◽

2011 ◽

pp. 54-60

Author(s):

Eduar Valencia ◽

Lina María Serna ◽

Carlos Mauricio Medina ◽

Álvaro Arango

Keyword(s):

Risk Factors ◽

Cardiovascular Risk ◽

Lipid Profile ◽

Turner Syndrome ◽

Coronary Disease ◽

Cholesterol Levels ◽

Profile Control ◽

Clinical Records

Introduction: Turner syndrome patients can present lipid profile alterations, which associated with obesity, frequent in these patients, causes increased cardiovascular risk, lowering their life expectancy. This research evaluates lipid profiles of patients with Turner syndrome between 2000 and 2009 and these are associated to the karyotype and other risk factors for coronary disease. Objective: To describe the lipid profile and other cardiovascular risk factors in a group of girls with Turner syndrome. Methods: This is a descriptive and retrospective study, which evaluated the clinical records of 21 girls with Turner syndrome. We sought metabolic risk factors for coronary disease such as lipid profile, weight, body mass index, and blood pressure. Results: Age at time of diagnostics ranged between 8 months to 17 years, four patients were below 10 years of age and 17 patients were over 11 years of age. The karyotype revealed: 57.3% with 45x monosomy, 33% with 46xx-45x mosaicism, and 9.5% with 46x-qx mosaicism. None of the patients was obese; the total cholesterol levels ranged from 116 mg/dl to 225 mg/dl with a mean of 168.7. When these patients were grouped by age, we found that 25% of those younger than 10 years of age had high levels of cholesterol vs. 58.8% for those over 10 years of age. Regarding the karyotype of the six patients with 46xx-45x karyotype, five (71.4%) presented hypercholesterolemia; 95.2% of the patients were normotensive. Discussion: This research revealed Turner syndrome patients present lipid profile alterations at early ages. Conclusion: It is important to include in the follow up protocol in these patients the lipid profile control and, thus, be able to conduct early interventions to improve their quality of life.

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