Standardised patient education in adrenal insufficiency: a prospective multi-centre evaluation

Objective Patients with adrenal insufficiency (AI) suffer from impaired quality of life and are at risk of adrenal crisis (AC) despite established replacement therapy. Patient education is regarded an important measure for prevention of AC and improvement of AI management. A standardized education programme was elaborated for patients with chronic AI in Germany. Design Longitudinal, prospective, questionnaire-based, multi-centre study. Methods During 2-h sessions, patients (n = 526) were provided with basic knowledge on AI, equipped with emergency cards and sets and trained in self-injection of hydrocortisone. To evaluate the education programme, patients from eight certified centres completed questionnaires before, immediately after and 6–9 months after training. Results 399 completed data sets were available for analysis. Questionnaire score-values were significantly higher after patient education, indicating successful knowledge transfer (baseline: 17 ± 7.1 of a maximum score of 29; after training: 23 ± 4.2; P < 0.001), and remained stable over 6–9 months. Female sex, younger age and primary cause of AI were associated with higher baseline scores; after education, age, cause of AI and previous adrenal crisis had a significant main effect on scores. 91% of patients would dare performing self-injection after training, compared to 68% at baseline. An improvement of subjective well-being through participation in the education programme was indicated by 95% of the patients 6–9 months after participation. Conclusion Patient group education in chronic AI represents a helpful tool for the guidance of patients, their self-assurance and their knowledge on prevention of adrenal crises. Repeated training and adaptation to specific needs, for example, of older patients is needed.

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EXTENSIVE EXPERTISE IN ENDOCRINOLOGY: Adrenal crisis

Acta Endocrinologica ◽

10.1530/eje-14-0824 ◽

2015 ◽

Vol 172 (3) ◽

pp. R115-R124 ◽

Cited By ~ 81

Author(s):

Bruno Allolio

Keyword(s):

Patient Education ◽

Adrenal Insufficiency ◽

Well Being ◽

Stressful Events ◽

Major Surgery ◽

Adrenal Crisis ◽

Self Administration ◽

Necrosis Factor Alpha ◽

Hydrocortisone Administration ◽

Glucocorticoid Deficiency

Adrenal crisis is a life-threatening emergency contributing to the excess mortality of patients with adrenal insufficiency. Studies in patients on chronic replacement therapy for adrenal insufficiency have revealed an incidence of 5–10 adrenal crises/100 patient years and suggested a mortality rate from adrenal crisis of 0.5/100 patient years. Patients with adrenal crisis typically present with profoundly impaired well-being, hypotension, nausea and vomiting, and fever responding well to parenteral hydrocortisone administration. Infections are the major precipitating causes of adrenal crisis. Lack of increased cortisol concentrations during infection enhances pro-inflammatory cytokine release and sensitivity to the toxic effects of these cytokines (e.g. tumour necrosis factor alpha). Furthermore, pro-inflammatory cytokines may impair glucocorticoid receptor function aggravating glucocorticoid deficiency. Treatment of adrenal crisis is simple and highly effective consisting of i.v. hydrocortisone (initial bolus of 100 mg followed by 200 mg over 24 h as continuous infusion) and 0.9% saline (1000 ml within the first hour). Prevention of adrenal crisis requires appropriate hydrocortisone dose adjustments to stressful medical procedures (e.g. major surgery) and other stressful events (e.g. infection). Patient education is a key for such dose adjustments but current education concepts are not sufficiently effective. Thus, improved education strategies are needed. Every patient should carry an emergency card and should be provided with an emergency kit for parenteral hydrocortisone self-administration. A hydrocortisone pen would hold a great potential to lower the current barriers to hydrocortisone self-injection. Improved patient education and measures to facilitate parenteral hydrocortisone self-administration in impending crisis are expected to significantly reduce morbidity and mortality from adrenal crisis.

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Happiness and the role of social protection: how types of social spending affected individuals’ life satisfaction in OECD countries, 1980–2012

Journal of International and Comparative Social Policy ◽

10.1080/21699763.2019.1601586 ◽

2020 ◽

Vol 36 (1) ◽

pp. 1-24

Author(s):

Oda Nordheim ◽

Pål E. Martinussen

Keyword(s):

Life Satisfaction ◽

Social Protection ◽

Well Being ◽

Oecd Countries ◽

Social Spending ◽

Data Sets ◽

Subjective Well Being ◽

Social Expenditure ◽

Individual Determinants ◽

Negative Impacts

ABSTRACTThe growing literature on individual determinants of subjective well-being has given little attention to political factors. This paper considers the welfare state, and how social expenditure affects individuals’ self-reported life satisfaction. The statistical analysis uses indicators of subjective well-being, reflecting individuals from OECD-countries between 1980 and 2012, with data gathered from the Eurobarometer and the World Values Survey - which are analysed in comparison. The results suggest that social spending should be studied in terms of underlying branches when addressing its implications. The results find social spending to be uncorrelated with levels of subjective well-being when considered in terms of total levels. When considered as types of spending however, a majority of the elements are found to have significant impacts. The findings show mixed results among the two data sets; however, important similarities are found in the way social spending related to health care and poverty are having positive impacts, and spending associated with unemployment and labour market programmes have negative impacts. As the correlations of the underlying elements affect life satisfaction in different directions, total social spending appears to be uncorrelated with subjective well-being, although the true impact depends on which socialpolicies are being promoted through such spending.

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From Data to Causes I: Building A General Cross-Lagged Panel Model (GCLM)

Organizational Research Methods ◽

10.1177/1094428119847278 ◽

2019 ◽

Vol 23 (4) ◽

pp. 651-687 ◽

Cited By ~ 11

Author(s):

Michael J. Zyphur ◽

Paul D. Allison ◽

Louis Tay ◽

Manuel C. Voelkle ◽

Kristopher J. Preacher ◽

...

Keyword(s):

Causal Inference ◽

Structural Equation ◽

National Income ◽

Well Being ◽

Equation Modeling ◽

Data Sets ◽

Subjective Well Being ◽

Panel Model ◽

Long Run ◽

Short Run

This is the first paper in a series of two that synthesizes, compares, and extends methods for causal inference with longitudinal panel data in a structural equation modeling (SEM) framework. Starting with a cross-lagged approach, this paper builds a general cross-lagged panel model (GCLM) with parameters to account for stable factors while increasing the range of dynamic processes that can be modeled. We illustrate the GCLM by examining the relationship between national income and subjective well-being (SWB), showing how to examine hypotheses about short-run (via Granger-Sims tests) versus long-run effects (via impulse responses). When controlling for stable factors, we find no short-run or long-run effects among these variables, showing national SWB to be relatively stable, whereas income is less so. Our second paper addresses the differences between the GCLM and other methods. Online Supplementary Materials offer an Excel file automating GCLM input for Mplus (with an example also for Lavaan in R) and analyses using additional data sets and all program input/output. We also offer an introductory GCLM presentation at https://youtu.be/tHnnaRNPbXs . We conclude with a discussion of issues surrounding causal inference.

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Adrenoleukodystrophy as a Cause of Spastic Paraparesis and Hyperpigmentation

Journal of the Endocrine Society ◽

10.1210/jendso/bvab048.227 ◽

2021 ◽

Vol 5 (Supplement_1) ◽

pp. A113-A113

Author(s):

Priyanka Kesavan Chary ◽

Aziz Ur Rehman ◽

Tamis Marie Bright

Keyword(s):

Erectile Dysfunction ◽

Lower Extremity ◽

Adrenal Insufficiency ◽

Adrenal Glands ◽

Spastic Paraparesis ◽

Well Being ◽

Adrenal Crisis ◽

Lower Extremity Weakness ◽

Mri Brain ◽

Work Up

Abstract Background: X-linked Adrenoleukodystrophy (X-ALD) is caused by an abnormal gene mutation on the X chromosome which codes for an abnormal ABC transporter, preventing transport of very long chain fatty acids (VLCFAs) into peroxisomes for beta oxidation. These VLCFAs, unable to be broken down, thus accumulate in the CNS, adrenal cortex, and Leydig cells of the testes. The clinical presentation depends upon the anatomical involvement, which most often includes the CNS and adrenal glands, and can be a cause of adrenomyeloneuropathy (AMN) or adrenal insufficiency. Case Report: We report a 44 year old male who presented with 9 years of progressive spastic paraparesis. Physical exam was significant for lower extremity spasticity, 3/5 bilateral lower extremity weakness, and hyperpigmentation. His initial work-up for autoimmune disease, MRI brain, and lumbar puncture were unremarkable, and genetic testing for Hereditary Spastic Paraparesis was negative. However, due to advancing symptoms over the years with progression of spasticity, polyneuropathy, development of erectile dysfunction and significant hyperpigmentation, re-evaluation with MRI brain and EMG revealed diffuse symmetrical cerebral and cerebellar volume loss and axonal motor peripheral neuropathy, respectively. Due to hyperpigmentation, further work-up for VLCFAs was positive and presence of the ABCD1 mutation confirmed the diagnosis of X-ALD. Evaluation of adrenal glands yielded high ACTH of >2000 pg/mL (normal: 7.2–63.3) and low AM cortisol of 2.5 ug/dL (normal: 6.2–19.4). Insignificant increase of cortisol from 2.5 ug/dL to 2.7 ug/dL with cosyntropin confirmed primary adrenal insufficiency as the cause of hyperpigmentation with elevated ACTH. Surprisingly, his testosterone level was normal at 542 (normal: 250–1100 ng/dL) and suggestive of Leydig cell-sparing and neuropathy-induced erectile dysfunction. The patient was started on hydrocortisone for adrenal insufficiency with improvement in his fatigue and feelings of well-being. He received physical therapy and is being monitored closely for progression of AMN by Neurology. Conclusion: Our case suggests that ALD should be considered in the differential diagnosis of unexplained paraparesis with associated hyperpigmentation in males. Moreover, timely diagnosis and medical intervention can prevent life-threatening adrenal crisis in such patients.

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A Systematic Review and Meta-Analysis of Subjective Age and the Association With Cognition, Subjective Well-Being, and Depression

The Journals of Gerontology Series B ◽

10.1093/geronb/gbaa069 ◽

2020 ◽

Cited By ~ 1

Author(s):

Felicia Alonso Debreczeni ◽

Phoebe E Bailey

Keyword(s):

Systematic Review ◽

Depressive Symptoms ◽

Meta Analysis ◽

Well Being ◽

Data Sets ◽

Subjective Well Being ◽

Subjective Age ◽

Scientific Databases ◽

Social Scientific ◽

And Gender

Abstract Objectives A systematic review and meta-analysis were conducted to quantify the degree to which subjective age is associated with cognition, subjective well-being, and depression. Method A systematic search was performed in three electronic social scientific databases, PsycINFO, Scopus, and Web of Science in May 2018. A manual forward and backward citation search of articles meeting the criteria for inclusion, including a mean participant age of 40+ years, was conducted in November 2019. Twenty-four independent data sets were included in the meta-analysis. Results Overall, a younger subjective age was related to enhanced subjective well-being and cognitive performance, and reduced depressive symptoms (r = .18). This association was stronger among collectivist (r = .24) than individualist (r = .16) cultures. Mean chronological age across samples (ranging from 55 to 83 years), type of subjective age scoring, and gender did not influence the strength of the overall association. Further analysis revealed that subjective age was individually associated with depressive symptoms (r = .20), subjective well-being (r = .17), and cognition (r = .14), and none had a stronger association with subjective age than the other. Discussion The results indicate a small yet significant association between subjective age and important developmental outcomes.

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Exploring Subjective Well-Being Factors with Support Vector Machine

International Journal of Engineering & Technology ◽

10.14419/ijet.v7i3.36.29100 ◽

2018 ◽

Vol 7 (3.36) ◽

pp. 164

Author(s):

Du Ni ◽

Ming K. Lim ◽

Zhi Xiao ◽

Xiaodong Feng

Keyword(s):

Support Vector Machine ◽

National Level ◽

Well Being ◽

Support Vector ◽

Data Sets ◽

Subjective Well Being ◽

Linear Regression Models ◽

Healthy Life ◽

Specific Factors ◽

Country Specific

National-level Subjective well-being (SWB) is known to be associated with six traditional factors, that is, GDP per capita, social support, healthy life expectancy, social freedom, generosity, and absence of corruption, but debates persist about the variability of these six factors. Whether the predicting in SWB is based only on these six factors or not? Are there any country-specific factors? Thus, we examined these two questions with the data sets from World Happiness Report and OECD database for U.S.. By control-ling the other factors except only one, we employed Support Vector Machine (SVM) to identify the weight of each factor without worrying about the limitations caused by the small size of the sample in years. We found that another three factors (protein con-sumption, fruit consumption and physician ratio among all employee) in addition to the six traditional factors can also affect na-tional-level SWB in U.S.; Moreover, the power of SVW in prediction is as high as 95.08%, which is much greater than that present-ed by the linear regression models (74.3%).

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MON-160 The Burdens of Adrenal Insufficiency: A Survey Study from Two Tertiary Care Centers in the United States

Journal of the Endocrine Society ◽

10.1210/jendso/bvaa046.1088 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

Author(s):

Natalia Genere ◽

Dingfeng Li ◽

Majlinda Xhikola ◽

Emma Behnken ◽

Tiffany Abbondanza ◽

...

Keyword(s):

Adrenal Insufficiency ◽

Replacement Therapy ◽

Burden Of Disease ◽

General Health ◽

Well Being ◽

The United States ◽

Comfort Level ◽

Survey Study ◽

Adrenal Crisis ◽

Glucocorticoid Replacement Therapy

Abstract Background: Adrenal insufficiency (AI) is a chronic disorder necessitating life-long replacement. Patients’ quality of life and health outcomes depend on knowledge and comfort level with self-management. Objective: To determine patients’ knowledge in regards to diagnosis and management, estimate burden of disease and to identify predictors of adverse outcomes in patients with AI Methods: Survey study of patients with AI evaluated at two tertiary medical centers between 2015 and 2019. Collected variables included data on circumstances of AI diagnosis, symptoms, management, burden of disease, and overall well-being. Results: Among 785 patients (mean age at diagnosis 44.2 ± 18.0, 64% women, and 92% Caucasian), 310 (40%) had primary AI (PAI), 255 (33%) had secondary AI (SAI) not related to glucocorticoid use, and 211 (27%) had steroid-induced AI (SIAI). Patients were diagnosed with AI after presenting with symptoms for a median of 1 year (0-6), 28% with symptoms lasting >2 years, 44% visiting emergency room (ER) at least once prior to diagnosis. A third of patients reported a discordant diagnosis from their medical record. Baseline glucocorticoid replacement therapy included hydrocortisone (HC) in 447 (59%), median of 20 mg (IQR 15 - 25mg), prednisone in 190 (25%), median of 5 mg (IQR 4 - 7.5mg), other regimens in 38 (5%), and no steroids in the remainder (85, 11%); 197 (26%) patients reported daily equivalent HC dose of >25 mg. Overall, 549 (73%) of patients reported use of stress dose steroids at least once per year, higher in patients taking HC >25 mg/day (3.2 vs 2.7 times per year if HC<25mg/day, p=0.01). Improper use of stress steroids was reported in 193, 25% patients. Patients taking HC>25 mg /day reported a higher number of adrenal crises (1.6 vs 1.3 in patients on HC<25 mg/day, p=0.04). Among 314 (41%) patients who reported ER visits due to adrenal crisis, only a third received prompt glucocorticoids. One third of patients described their general health as fair or poor. Predictors of negative perceptions of overall health included SIAI (OR 6.2 and 2.5, vs PAI and SAI respectively), poor understanding of diagnosis (OR 2.6), daily HC>25 mg (OR 2.1), and presence of at least one adrenal crisis (OR 2.3) (p<0.001 for all). Conclusion: Patients with AI experience delay in diagnosis, and a third do not fully understand their diagnosis. In addition to patient education, interventions to improve general health and outcomes may include selecting a physiological glucocorticoid replacement therapy, prevention of adrenal crisis, and improving ER care.

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Work-life Balance Among Croatian Employees: Role Time Commitment, Work-home Interference and Well-being

Social Science Information ◽

10.1177/0539018402041002006 ◽

2002 ◽

Vol 41 (2) ◽

pp. 281-301 ◽

Cited By ~ 4

Author(s):

Branimir Šverko ◽

Lidija Arambašić ◽

Mirta Galešić

Keyword(s):

Working Hours ◽

Final Analysis ◽

Well Being ◽

Work Life ◽

Data Sets ◽

Subjective Well Being ◽

Time Commitment ◽

Internet Users ◽

On Line ◽

Antecedents And Consequences

This study explores whether work-life imbalance due to long working hours exists among employees in Croatia, and examines some of its antecedents and consequences. In studying the consequences, joint effects of the time spent at work and in home roles are considered in a broader conceptual framework which incorporates the concept of work-life interference. A questionnaire assessing individual and contextual variables, time spent at work and in home activities, intensity of work-home conflicts, and subjective well-being was applied via an on-line survey of Internet users (N = 188), and via personal interviews (N = 319). Since the two data sets did not differ significantly, they were merged in the final analysis. The results show that 75 percent of the respondents work more than 40 hours a week and 30 percent in excess of 48 hours per week. Hours spent at work and in home activities were not significantly related to subjective well-being (defined as low levels of stress symptoms and high levels of life satisfaction), thus questioning the common assumption that more hours mean worse well-being. Work-home interference variables, in particular the work-to-home conflict, account for a major part of the well-being variance.

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Conflict Avoidance in Old Age

GeroPsych ◽

10.1024/1662-9647/a000168 ◽

2017 ◽

Vol 30 (2) ◽

pp. 61-70 ◽

Cited By ~ 4

Author(s):

Lia Oberhauser ◽

Andreas B. Neubauer ◽

Eva-Marie Kessler

Keyword(s):

Social Support ◽

Perceived Social Support ◽

Well Being ◽

Cross Sectional Study ◽

Conflict Avoidance ◽

Subjective Well Being ◽

Sectional Study ◽

Cross Sectional ◽

Adult Lifespan ◽

Set Up

Abstract. Conflict avoidance increases across the adult lifespan. This cross-sectional study looks at conflict avoidance as part of a mechanism to regulate belongingness needs ( Sheldon, 2011 ). We assumed that older adults perceive more threats to their belongingness when they contemplate their future, and that they preventively react with avoidance coping. We set up a model predicting conflict avoidance that included perceptions of future nonbelonging, termed anticipated loneliness, and other predictors including sociodemographics, indicators of subjective well-being and perceived social support (N = 331, aged 40–87). Anticipated loneliness predicted conflict avoidance above all other predictors and partially mediated the age-association of conflict avoidance. Results suggest that belongingness regulation accounts may deepen our understanding of conflict avoidance in the second half of life.

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Leisure Activities and the Subjective Well-Being of Older Adults in Croatia

GeroPsych ◽

10.1024/1662-9647/a000179 ◽

2018 ◽

Vol 31 (1) ◽

pp. 31-39 ◽

Cited By ~ 1

Author(s):

Ljiljana Kaliterna Lipovčan ◽

Tihana Brkljačić ◽

Zvjezdana Prizmić Larsen ◽

Andreja Brajša-Žganec ◽

Renata Franc

Keyword(s):

Older Adults ◽

Leisure Activities ◽

Leisure Activity ◽

Later Life ◽

Perceived Health ◽

Well Being ◽

Hierarchical Regression ◽

Subjective Well Being ◽

Convenience Sample ◽

Financial Status

Abstract. Research shows that engagement in leisure activities promotes well-being among older adults. The objective of the current study was to examine the relationship between subjective well-being (flourishing) and leisure activities (total number of different activities in the previous year) in a sample of older adults in Croatia, thereby considering the variables of sex, marital status, financial status, and self-perceived health. The differences in the examined variables between the groups of older adults who reported to be engaged in new activities with those who did not were also examined. The sample of N = 169 older adults aged 60 years and above was drawn from a convenience sample of adult internet users in Croatia. Participants reported their self-perceived health and the number of leisure activities they engaged in over the previous year as well as completing the Flourishing Scale. Hierarchical regression analyses indicated that older adults who were engaged in more various leisure activities, who perceived better financial status, and who were married reported higher levels of flourishing. A comparison of the two groups of older adults with and without engagement in leisure activities showed that those engaged in at least one leisure activity were more likely to be women, reported higher levels of flourishing, and perceived their own financial status as better. This study indicated that engaging in leisure activities in later life might provide beneficial effects for the well-being of older adults.

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