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

2018 ◽  
Vol 7 (4) ◽  
pp. 534-543 ◽  
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.

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

2019 ◽  
Vol 104 (11) ◽  
pp. 5073-5083 ◽  
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.

Emotional state, cognitive functioning and quality of life of adult women with Turner syndrome in Lithuania

2019 ◽  
Vol 45 ◽  
pp. 37-42 ◽  
Author(s):  
L. Lašaitė ◽  
R. Krikščiūnienė ◽  
B. Žilaitienė ◽  
R. Verkauskienė
Keyword(s):  
Quality Of Life ◽  
Cognitive Functioning ◽  
Turner Syndrome ◽  
Emotional State ◽  
Adult Women

scholarly journals Impact of transition on quality of life in patients with congenital adrenal hyperplasia diagnosed during childhood

2017 ◽  
Vol 6 (7) ◽  
pp. 422-429 ◽  
Author(s):  
Anne Bachelot ◽  
Magaly Vialon ◽  
Amandine Baptiste ◽  
Isabelle Tejedor ◽  
Caroline Elie ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Congenital Adrenal Hyperplasia ◽  
Psychological Health ◽  
Adult Patients ◽  
Adrenal Hyperplasia ◽  
Adult Care ◽  
Related Quality ◽  
The Impact

Background Health-related quality of life (QoL) in adult patients with congenital adrenal hyperplasia (CAH) has been variously reported. However, there is no study evaluating the impact of transition on quality of life. Methods Adult patients with classic or non-classic CAH diagnosed during childhood CAH, born between 1970 and 1990, were recruited from the registers of Pediatric departments belonging to the French reference center for endocrine rare disease. Primary end point was the QoL (WHOQOL-BREF). Results Seventy-three patients were included in the study, among them 59/73 were transferred to adult endocrinologist by their pediatricians for transition. WHOQOL-BREF scores were similar between patients with or without transition to specialist adult services, except for environment dimension score, which was slightly higher in CAH patients without transition. However, CAH patients with a regular follow-up had a better physical health, psychological health and environment score and item global QoL than the group without regular follow-up after transition. Conclusion Regular medical follow-up in adulthood is associated with the transition between pediatric and adult care and is associated with better QoL in adults with CAH.

scholarly journals QOLP-27. USE OF THE NEURO-QOL COGNITIVE FUNCTION SHORT-FORM AS A TOOL FOR ASSESSING PATIENT-PERCEIVED NEUROCOGNITION FOLLOWING RADIOTHERAPY

2020 ◽  
Vol 22 (Supplement_2) ◽  
pp. ii180-ii181
Author(s):  
Sung Choi ◽  
Emily Kowalski ◽  
Rahul Khairnar ◽  
Mark Mishra
Keyword(s):  
Quality Of Life ◽  
Cognitive Function ◽  
Neurological Disorders ◽  
Short Form ◽  
Minimum Clinically Important Difference ◽  
Primary Objective ◽  
Study Cohort ◽  
Tumor Type

Abstract The Quality-of-Life in Neurological Disorders (Neuro-QOL) instruments are a practical set of validated tools utilized to measure a core set of health-related quality-of-life parameters that are relevant to patients with neurological disorders. The tools can be completed in approximately 1-minute. The primary objective of this study was to evaluate the feasibility of utilizing the eight-question Neuro-QoL Cognitive Function- Short Form (NCF-SF) tool (v2.0) to assess cognitive outcomes in patients with primary and secondary brain tumors undergoing radiotherapy. Patients completed the NCF-SF at baseline and during follow-up visits. Raw scores were converted to a standardized T-score that has been normalized to have mean score of 50 and standard deviation (SD) of 10. Descriptive statistical analyses were performed to assess the prevalence of baseline cognitive impairment (defined as &gt; 1 SD below the normative mean), and to assess longitudinal changes in Neuro-QOL scores. A minimum clinically important difference (MCID) was defined as a change from baseline of &gt;7.5, based on previously published literature. Ninety-one patients completed NCF-SF at baseline and at least one follow-up visit. The mean baseline score for the study cohort was 49.9 (SD 9.2). Nineteen percent of patients (n=17/91) had impaired function at baseline. Baseline scores did not differ based on tumor type (p=0.79): Glioma/ependymoma 49.6 (n=35); brain metastases 49.1 (n=24); Meningioma/benign 50.7 (n=32). Following radiation, 15% and 22% of patients experienced a MCID decline at 1- (n=60) and 3- months (n=65), respectively. However, 17% and 20% of patients demonstrated a MCID improvement at 1- and 3-months, respectively. In conclusion, this represents the first study to utilize the NCF-SF to measure cognitive function in patients undergoing brain radiotherapy. Use of NCG-SF was feasible, and identified patients with meaningful changes in cognitive function over time. Future clinical trials may consider use of Neuro-QOL to assess patient-perceived cognitive function.

scholarly journals Patients with psychiatric diagnoses have lower quality of life than other patients with juvenile rheumatic disease: a prospective study

Rheumatology ◽  
2021 ◽  
Author(s):  
Silja Kosola ◽  
Heikki Relas
Keyword(s):  
Quality Of Life ◽  
Disease Activity ◽  
Transition Phase ◽  
University Hospital ◽  
Psychiatric Diagnoses ◽  
Adult Care ◽  
The Difference ◽  
Lower Hrqol

Abstract Introduction Transition of adolescents with chronic diseases from pediatric healthcare to adult care requires attention to maintain optimal treatment results. We examined changes in health-related quality of life (HRQoL) and disease activity among juvenile idiopathic arthritis (JIA) patients with or without concomitant psychiatric diagnoses after transfer to an adult clinic. Methods We prospectively followed 106 consecutive patients who were transferred from the New Children’s Hospital to the Helsinki University Hospital Rheumatology outpatient clinic between April 2015 and August 2019 and who had at least one follow-up visit. HRQoL was measured using 15D, a generic instrument. Results The patients’ median age at transfer was 16 years and disease duration 4.0 years. Patients were followed for a median of 1.8 years. Disease activity and overall HRQoL remained stable, but distress (dimension 13 of 15D) increased during follow up (P=0.03). At baseline, patients with at least one psychiatric diagnosis had lower overall 15D scores (0.89±0.14 vs. 0.95±0.05, P&lt;0.01) and higher disease activity (Disease Activity Score 28; 1.88±0.66 vs. 1.61±0.31, P=0.01) than patients without psychiatric diagnoses. The difference in overall 15D persisted over the study period. Conclusions Transition phase JIA patients with psychiatric diagnoses had lower HRQoL than other JIA patients. Despite reduced disease activity and pain, HRQoL of patients with psychiatric diagnoses remained suboptimal at the end of follow-up. Our results highlight the necessity of comprehensive care and support for transition phase JIA patients.

scholarly journals Determinants of Medical Care for Young Women with Turner Syndrome

2009 ◽  
Vol 94 (9) ◽  
pp. 3408-3413 ◽  
Author(s):  
Marie Devernay ◽  
Emmanuel Ecosse ◽  
Joël Coste ◽  
Jean-Claude Carel
Keyword(s):  
Young Adult ◽  
Turner Syndrome ◽  
Low Socioeconomic Status ◽  
Short Form ◽  
Medical Center ◽  
Lipid Level ◽  
Adult Women ◽  
Adult Care ◽  
Gh Treatment

Context: Turner syndrome is associated with reduced life expectancy. Lifelong follow-up is strongly recommended, but follow-up during the transition between pediatric and adult care has been little evaluated. Objective: Our objective was to evaluate the medical follow-up of a population-based cohort of young adult patients. Design, Setting, and Patients: A questionnaire study was conducted with a national cohort of 568 women, aged 22.6 ± 2.6 yr (range, 18.3–31.2), a mean of 6 yr after stopping GH treatment (StaTur cohort). Main Outcome Measures: We assessed the proportion of patients with adequate follow-up at seven medical assessments over 4 yr and its determinants. Results: Most participants were followed by gynecologists or general practitioners. Medical assessments were performed in 16% (audiometry) to 68% (lipid level determinations) of participants, with little consistency in individual patients. Only 20 of 568 patients (3.5%) underwent all assessments in the 4-yr period. Multivariate analysis identified the type of physician as the only factor consistently associated with follow-up, which was more adequate with endocrinologists than with other physicians. Other variables associated with at least one adequate follow-up assessment were paternal socioeconomic class, education level, number of Turner syndrome disease components, size of the medical center following the patient in childhood, and physical health dimensions of Short Form 36 questionnaire. Conclusions: By contrast with the intensive medical follow-up in childhood, follow-up was grossly inadequate during the transition phase. During this phase, patients should be sent to physicians specializing in Turner syndrome and particular attention should be paid to patients with lower levels of education and from families of low socioeconomic status. This study finds adherence to recommended follow-up for young adult women with Turner syndrome is incomplete even when there is good access to care.

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