scholarly journals Quality of life in 70 women with disorders of sex development

2006 ◽  
Vol 155 (6) ◽  
pp. 877-885 ◽  
Author(s):  
Trine H Johannsen ◽  
Caroline P L Ripa ◽  
Erik L Mortensen ◽  
Katharina M Main
Keyword(s):  
Quality Of Life ◽  
Disorders Of Sex Development ◽  
Diagnostic Procedures ◽  
Well Being ◽  
Structured Interview ◽  
Life Assessment ◽  
Hormone Deficiency ◽  
Hopkins Symptom Checklist ◽  
Sex Development

Objective: The aim of this study was to assess the quality of life and psychosocial well-being in women with disorders of sex development (DSD). Design: An open case-control study. Methods: Social and psychiatric information was collected via a structured interview from 70 Danish women diagnosed with DSD, 70 controls matched on sex, age, and school education, and six women with isolated genital malformations. Quality of life and mental distress were assessed by ‘Quality of Life-Assessment of Growth Hormone Deficiency in Adults’ (QoL-AGHDA) and three symptom scales from the ‘Hopkins Symptom Checklist’ (SCL-90-R; i.e. somatization, depression, and anxiety) respectively. For both measures, higher scores reflected poorer outcomes. Results: Present relationships and having children were less frequent in patients than in controls (P = 0.02 and P < 0.001 respectively). Previous suicidal thoughts (P = 0.002) and a higher frequency of psychological/psychiatric counseling for severe problems (P = 0.06) were more frequently reported in patients than in controls. The mean QoL-AGHDA score was significantly higher in patients than in controls (5.5 vs 2.9; P = 0.002), especially for congenital adrenal hyperplasia (CAH) females (P = 0.01) and virilized 46,XX and 46,XY females (P = 0.04). The total SCL score was higher in patients than in controls (mean 23.2 vs 20.0), reaching significance for anxiety (mean 6.3 vs 4.3, P = 0.03) with highest score in CAH (P = 0.01). Conclusion: An impaired quality of life and more affective distress were observed especially in CAH patients and virilized 46,XX and 46,XY females. This may be caused by trauma from distressing diagnostic procedures, the chronic illnesses per se, and psychosocial consequences of the disorders.

scholarly journals Seven years of growth hormone (GH) replacement improves quality of life in hypopituitary patients with adult-onset GH deficiency

2017 ◽  
Vol 176 (2) ◽  
pp. 99-109 ◽  
Author(s):  
Mariam Elbornsson ◽  
Alexandra Horvath ◽  
Galina Götherström ◽  
Bengt-Åke Bengtsson ◽  
Gudmundur Johannsson ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Growth Hormone ◽  
Gh Deficiency ◽  
Well Being ◽  
Life Assessment ◽  
Hormone Deficiency ◽  
First Year ◽  
Adult Onset ◽  
Gh Replacement

Objective Few studies have determined the effects of long-term growth hormone (GH) replacement on quality of life (QoL). This study investigated the effects of 7 years of GH replacement on QoL. Design A prospective, single-center, open-label study of 95 adults (mean age 52.8 years; 46 men) with adult-onset GH deficiency (GHD). Methods QoL was measured using Quality of Life-Assessment for Growth Hormone Deficiency in Adults (QoL-AGHDA) and Psychological General Well-Being (PGWB) scores. Results The GH dose was gradually increased from 0.13 mg/day to 0.42 mg/day. IGF-I SD score increased from −1.49 at baseline to 0.35 at study end. The GH replacement induced sustained improvements in total QoL-AGHDA and PGWB scores. GHD women had a more marked improvement in total QoL-AGHDA score than GHD men after 5 and 7 years. Most of the improvement in QoL was seen during the first year, but there was a small further improvement also after one year as measured using QoL-AGHDA. All QoL-AGHDA dimensions improved, but the improvement in memory and concentration as well as tenseness occurred later than that of other dimensions. Correlation analysis demonstrated that the patients with the lowest baseline QoL had the greatest improvement in QoL. Conclusions Seven years of GH replacement improved QoL with the most marked improvements in GHD women and in patients with low baseline QoL. Most, but not all, of the improvement in QoL was seen during the first year. Some QoL-AGHDA dimensions (memory and concentration, tenseness) responded at a slower rate than other dimensions.

scholarly journals Quality of Life and Psychological Well-Being in Child and Adolescent with Disorders of Sex Development

2020 ◽  
Vol 0 (0) ◽  
pp. 0-0
Author(s):  
Birsen Şentürk Pilan ◽  
Burcu Özbaran ◽  
Didem Çelik ◽  
Tuğçe Özcan ◽  
Samim Özen ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Disorders Of Sex Development ◽  
Well Being ◽  
Child And Adolescent ◽  
Psychological Well Being ◽  
Sex Development

P–478 Quality of life assessment in women undergoing assisted reproduction. A study of FertiQol and HADS

2021 ◽  
Vol 36 (Supplement_1) ◽  
Author(s):  
N Figueras-Puigderrajols ◽  
A Ballesteros ◽  
D Guerra
Keyword(s):  
Quality Of Life ◽  
Depression Scale ◽  
Well Being ◽  
Self Esteem ◽  
Mobile App ◽  
Life Assessment ◽  
Fertility Treatment ◽  
Anxiety And Depression ◽  
Gamete Donation

Abstract Study question The present study aims to explore infertility-related psychosocial outcomes, including fertility quality of life (QoL), as well as anxiety and depression levels, in women diagnosed with infertility. Summary answer Differences on fertility-related QoL appeared when comparing treatment types (gamete donation vs own gamete). Furthermore, statistically significant associations were found between QoL and anxious-depressive symptomatology. What is known already Those who wish to have children and do not achieve their objective just like other peers can see their goals and expectations with pessimism, generating concern and a series of negative emotions. Several psychological implications of infertility have been described, such as increased levels of stress, anxiety, depression, decreased self-esteem, mood and hope, or poor relationship adjustment. The emotional impact of infertility in people’s life cycle can be so strong that reducing it only to biological aspects would lead to a dangerous situation of neglect. For this reason, QoL assessment in ART becomes an important need. Study design, size, duration FertiQol stands as the most widely used tool to assess infertility-related QoL, overcoming the limitations of other instruments that only target specific medical conditions. The present is a multi-site cross-sectional study over patients with infertility (n = 104), aiming to explore their fertility-QoL, as well as their anxiety and depression levels, which are symptoms that have been previously associated.Questionnaire administration, and sociodemographic and medical data gathering took place between January 2019 and December 2020. Participants/materials, setting, methods Participants were 104 female patients (M.age= 39.8) undergoing or expecting a fertility treatment. The FertiQol Spanish version was administered through mobile app, and its paper version distributed at medical/psychological appointments. QoL was self-reported through FertiQol, assessing the influence of infertility problems in various areas (e.g. impact on self-esteem, emotions, general health, family, partners, social relationships, work, life projects...). Additionally, HADS (Hospital Anxiety and Depression Scale) was provided as a measurement of anxiety and depression levels. Main results and the role of chance Regarding treatments, 50.6% of participants were currently undergoing gamete donation while 44.3% were undergoing treatments that involved using their own gametes. After comparing QoL between these treatment types, results showed that patients who underwent egg donation, compared to those who used their own eggs, reported statistically significantly lower scores of QoL in the Social Subscale (p = .03), but not in the other psychological outcomes. Also, statistically significant negative correlations were found between HADS and all core FertiQol subscales (p&lt; .05). Results are consistent with previous studies showing similar associations between fertility QoL and anxiety and depression, as well as with increased psychological negative implications of gamete donation. The majority of participants reported non-pathological scores of anxiety and depression when considering the cut off value of 8 for HADS, thus suggesting the presence of a relatively healthy sample. The number of treatments that patients had previously taken and the years of infertility were not associated with any of the psychological variables. Limitations, reasons for caution Some limitations to consider are presence of co-morbid diagnosis, differences in medication, or patient’s cultural backgrounds.Also, conclusions should be interpreted cautiously since the design doesn’t allow causal inferences. Further investigations should consider a continuous assessment to explore changes in psychological well-being at different points of intervention, specially with gamete donation. Wider implications of the findings: The great advantage we’ve seen so far when using FertiQol is the possibility to identify more accurately the true impact on other aspects of patient’s well-being besides the emotional area.ART professionals, including psychologists and counselors,will have more information within a small amount of time about QoL when using this tool. Trial registration number 1503-BCN–019-DG

scholarly journals Multidisciplinary Management of Disorders of Sex Development in Indonesia, A Prototype in Developing Country

2017 ◽  
Vol 3 (1) ◽  
pp. 17 ◽  
Author(s):  
Nurin Aisyiyah Listyasari ◽  
Ardy Santosa ◽  
Achmad Zulfa Juniarto ◽  
Sultana MH Faradz
Keyword(s):  
Quality Of Life ◽  
Disorders Of Sex Development ◽  
Multidisciplinary Management ◽  
Improve Quality ◽  
Gender Assignment ◽  
Androgen Excess ◽  
Comprehensive Management ◽  
Sex Development ◽  
Management Protocol

Background : Disorder of sex development (DSD) patients require comprehensive management to improve quality of life. A standardized management protocol for patients in Indonesia is not yet available resulting in patients infrequently received a proper diagnosis. This study reported a multidisciplinary management DSD in Indonesia based on minimal diagnostic facilities and expertise in developing country.Objectives : The purpose of the study is to review the management of DSD patients in Indonesia relates to providing appropriate gender assignment and to improving patients quality of life.Methodology : We analyzed the records of DSD patient admitted to the division of Human Genetics Center for Biomedical Research (CEBIOR) Faculty of Medicine Diponegoro University, Semarang, Indonesia from May 2004 - December 2015. Data were collected and analyzed for physical examination, family pedigree karyotyping, hormonal assays and  psychosocial.  Other examination such as ultrasonography, Xray and Cytoscopy were also recorded for selected cases. Bimonthly, Sexual Adjustment Team (SAT) meeting was recorded.Results : From the total 617 DSD cases we found 426 cases (69,04 %) with 46, XY DSD, 117 cases (18,96%) with 46,XX DSD and 74 cases (12%) with sex chromosome DSD. Most of the patients in the group of 46, XY DSD are Unknown Male Undervirilization (UMU) with 256 cases (60.09%). As the majority cases of 46, XX DSD was Congenital Adrenal Hyperplasia with 81 cases (69.23%). The remaining cases were Androgen Action Disorder (AAD) with 140 cases (32.86%), 46, XY DSD Gonadal Dysgenesis with 30 cases (7.04%), Androgen Excess Disorders with 3 cases (2.56%), Defect of Mullerian Development with 19 cases (16,24%), 3 cases (2.56%) of Androgen Excess and 3 cases (2.56%) of 46, XX Gonadal Dysgenesis.Conclusion : Comprehensive management for DSD Patients help patient in diagnosis, gender assignment and support patient to improve quality of life. This multidisciplinary of DSD team is the only team in Indonesia that can be used as a model for other center in Indonesia as well as other developing countries with minimal diagnostic facilities.

scholarly journals Patient-reported outcomes at discontinuation of anti-angiogenesis therapy in the randomized trial of chemotherapy with bevacizumab for advanced cervical cancer: an NRG Oncology Group study

2020 ◽  
Vol 30 (5) ◽  
pp. 596-601
Author(s):  
Dana Chase ◽  
Helen Q Huang ◽  
Bradley J Monk ◽  
Lois Michelle Ramondetta ◽  
Richard T Penson ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cervical Cancer ◽  
Patient Reported Outcomes ◽  
Performance Status ◽  
Well Being ◽  
Treatment Discontinuation ◽  
Life Assessment ◽  
Recurrent Cervical Cancer ◽  
Patient Reported

IntroductionTo describe patient-reported outcomes and toxicities at time of treatment discontinuation secondary to progression or toxicities in advanced/recurrent cervical cancer patients receiving chemotherapy with bevacizumab.MethodsSummarize toxicity, grade, and health-related quality of life within 1 month of treatment discontinuation for women receiving chemotherapy with bevacizumab in GOG240.ResultsOf the 227 patients who received chemotherapy with bevacizumab, 148 discontinued study protocol treatment (90 for disease progression and 58 for toxicity). The median survival time from treatment discontinuation to death was 7.9 months (95% CI 5.0 to 9.0) for those who progressed versus 12.1 months (95% CI 8.9 to 23.2) for those who discontinued therapy due to toxicities. The most common grade 3 or higher toxicities included hematologic, gastrointestinal, and pain. Some 57% (84/148) of patients completed quality of life assessment within 1 month of treatment discontinuation. Those patients who discontinued treatment due to progression had a mean decline in the FACT-Cx TOI of 3.2 points versus 2.2 in patients who discontinued therapy due to toxicity. This was a 9.9 point greater decline in the FACT-Cx TOI scores than those who discontinued treatment due to progression (95% CI 2.8 to 17.0, p=0.007). The decline in quality of life was due to worsening physical and functional well-being. Those who discontinued treatment due to toxicities had worse neurotoxicity and pain.DiscussionPatients who discontinued chemotherapy with bevacizumab for toxicity experienced longer post-protocol survival but significantly greater declination in quality of life than those with progression. Future trial design should include supportive care interventions that optimize physiologic function and performance status for salvage therapies.

scholarly journals Quality of Life in Children with Disorders of Sex Development

2017 ◽  
Vol 88 (5) ◽  
pp. 324-330 ◽  
Author(s):  
Nalini M Selveindran ◽  
Syed Zulkifli Syed Zakaria ◽  
Muhammad Yazid Jalaludin ◽  
Rahmah Rasat
Keyword(s):  
Quality Of Life ◽  
Family Income ◽  
Disorders Of Sex Development ◽  
School Functioning ◽  
Control Group ◽  
Evidence Based Treatment ◽  
Sex Development ◽  
Longitudinal Outcome ◽  
And Gender

Background/Aims: Disorders of sex development (DSD) are a heterogeneous group of rare conditions. Evidence-based treatment is challenged by a lack of clinical longitudinal outcome studies. We sought to investigate the quality of life of children with DSD other than congenital adrenal hyperplasia. Methods: The participants (aged 6–18 years) were 23 patients raised as males and 7 patients raised as females. Control data were obtained from representatives of the patients’ siblings matched for age and gender. The Pediatric Quality of Life InventoryTM Version 4.0 (PedsQL) Generic Core Scales were used as the study tool. Results: In comparison with the reference data, the patient group had significantly lower overall PedsQL (p < 0.01) and school functioning (p < 0.01) scores. Also, the total PedsQL score was significantly lower in patients with DSD who were of female social sex as compared to the controls who were females. Family income, surgical procedures, degree of virilization, and mode of puberty did not influence the PedsQL scores. Conclusion: This study revealed a poorer quality of life for patients with DSD as compared to the age-matched control group. This highlights the need for a skilled multidisciplinary team to manage this group of patients.

Quality-of-life assessment in patients who had been surgically treated for cerebellar pilocytic astrocytoma in childhood

2002 ◽  
Vol 96 (2) ◽  
pp. 229-234 ◽  
Author(s):  
Alfredo Pompili ◽  
Marco Caperle ◽  
Andrea Pace ◽  
Valerio Ramazzotti ◽  
Laura Raus ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Life Experience ◽  
Well Being ◽  
Complete Recovery ◽  
Life Assessment ◽  
Control Group ◽  
Karnofsky Performance Scale ◽  
Content Type ◽  
Fine Print

Object. After radical surgery for childhood cerebellar astrocytomas, patients are considered to be cured. Long-term follow up demonstrates that these patients survive, with most of them leading a normal life. The study reported here was aimed at assessing the quality of life (QOL) of these adults, which is defined as a person's sense of well-being, as derived from his or her current experience of life as a whole. Methods. Twenty patients who had undergone surgery between 1970 and 1985 were enrolled in the study. In four patients ventriculoperitoneal shunts were in place; two of these patients had required more than six shunt revisions. At present, all patients have clear neuroimaging studies and their Karnofsky Performance Scale (KPS) scores are as follows: 70 in three, 80 in seven, 90 in six, and 100 in four. A QOL questionnaire was administered to the patients and to a control group consisting of 20 healthy volunteers of matching age and sex. The chi-square test was applied to compare patients and controls. Traditional questions on the level of education, work, whether the patients have their own families, and whether they possessed a driver's license were asked at the end of the questionnaire. In all the dimensions assessed except one (sex life), the difference between patients and control volunteers was significant, socializing and adolescence being the most striking ones. This was also true when the three patients with the lowest KPS scores and the worst QOL results were excluded. Conclusions. By traditional standards, these patients appear to fare quite well. Nevertheless, their self-reported life experience is unsatisfying when compared with the control group. The authors conclude that psychosocial factors are critical to complete recovery and the QOL of children who undergo successful operations for benign cerebellar astrocytoma.

PSYCHOLOGICAL WELL-BEING OF THE DYAD OF PARTNERS WITH DISABILITIES

2019 ◽  
Vol 7 ◽  
pp. 133
Author(s):  
Natalya Shipova ◽  
Ulyana Sevastyanova
Keyword(s):  
Quality Of Life ◽  
Close Relationships ◽  
Well Being ◽  
Structured Interview ◽  
Subjective Well Being ◽  
Psychological Well Being ◽  
Level Of Satisfaction ◽  
The Social ◽  
High Level

The relevance of the scientific problem and the scientific novelty are due to the social demand of society for studying problems related to the subjective well-being of people with disabilities. The focus of our attention is the psychological well-being of dyads in close relationships (romantic or marital). The aim of the study is to analyze the psychological well-being in a dyad of partners who are in close relationships. The article analyzes the characteristics inherent in close relations of couples in which one of the partners has a disability. Using the Scale of Adaptation and Cohesion (FACES-3)), the levels of adaptation and cohesion of the dyads were revealed. Methods Quality of life Enjoyment and Satisfaction Questionnaire examines quality of life and subjective well-being, assesses the degree of subjective satisfaction with emotional and social spheres, health, activity in free time. Particularly analyzed data of a semi-structured interview. Empirically revealed differences in the understanding of their own close relationships depending on the health status of the partner. Dyads, including partners with disabilities, demonstrate a high level of satisfaction, average cohesion values, partial balance. The study is complex, and now there is a clear prospect for its continuation.  

scholarly journals Does long-term GH replacement therapy in hypopituitary adults with GH deficiency normalise quality of life?

2006 ◽  
Vol 155 (1) ◽  
pp. 109-119 ◽  
Author(s):  
Maria Koltowska-Häggström ◽  
Anders F Mattsson ◽  
John P Monson ◽  
Paul Kind ◽  
Xavier Badia ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Gh Deficiency ◽  
Disease Onset ◽  
Life Assessment ◽  
Hormone Deficiency ◽  
Gh Replacement ◽  
Country Specific

Objective: To determine whether impaired quality of life (QoL) in adults with GH deficiency (GHD) is reversible with long-term GH therapy and whether the responses in QoL dimensions differ from each other. Methods: QoL was measured by the Quality of Life–Assessment for Growth Hormone Deficiency in Adults (QoL-AGHDA) in general population samples in England & Wales, The Netherlands, Spain and Sweden (n = 892, 1038, 868 and 1682 respectively) and compared with corresponding patients’ data from KIMS (Pfizer International Metabolic Database) (n = 758, 247, 197 and 484 respectively) for 4–6 years a follow-up. The subsets of patients from England and Wales, and Sweden with longitudinal data for 5 years’ follow-up were also analysed. The change of the total QoL-AGHDA scores and responses within dimensions were evaluated. Subanalyses were performed to identify any specificity in response pattern for gender, age, disease-onset and aetiology. Results: Irrespective of the degree of impairment, overall QoL improved dramatically in the first 12 months, with steady progress thereafter towards the country-specific population mean. Problems with memory and tiredness were the most serious burden for untreated patients, followed by tenseness, self-confidence and problems with socialising. With treatment, these improved in the reverse order, normalising for the latter three. Conclusions: Long-term GH replacement results in sustained improvements towards the normative country-specific values in overall QoL and in most impaired dimensions. The lasting improvement and almost identical pattern of response in each patient subgroup and independent of the level of QoL impairment support the hypothesis that GHD may cause these patients’ psychological problems.

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