scholarly journals Quality of Life and Its Determinants in Patients With Adrenal Insufficiency: A Survey Study From Three Tertiary Centers in the United States

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. A92-A93
Author(s):  
Dingfeng Li ◽  
Malavika Suresh ◽  
Tobias Else ◽  
Sarah Brand ◽  
Oksana Hamidi ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Adrenal Insufficiency ◽  
Replacement Therapy ◽  
Financial Burden ◽  
The United States ◽  
Survey Study ◽  
Current Evidence ◽  
Adrenal Crisis ◽  
The Usa

Abstract Context: Quality of life (QoL) is impaired in patients with chronic adrenal insufficiency (AI) despite standard glucocorticoid (GC) replacement therapy. Current evidence on the determinants of QoL is scarce and limited in very few European countries, and how it relates to AI subtypes remains underexplored. Objective: We conducted the first survey study in patients with AI in the USA to determine the correlations between clinical parameters, adverse outcomes, patient education, socioeconomic factors, and QoL in different subtypes of AI. Design, Setting and Participants: Cross-sectional survey study of 529 patients with AI between 2015 and 2020, at three tertiary centers in the USA. Intervention: Patient-centered questionnaires. Main Outcome Measures: QoL scores using Short-Form 36. Results: Of 529 participants, 223 (42.2%) had primary AI (PAI), 190 (35.9%) had secondary AI (SAI), and 116 (21.9%) had glucocorticoid induced AI (GIAI). Median age at the time of survey was 58 years (IQR: 43–68), 342 (64.8%) were women and 483 (91.3%) were Caucasians. Median duration of AI was 6 years (IQR: 3–14.5), longest in patients with PAI (11 vs 4 years in SAI and GIAI, p=0.0001). Overall, Physical Composite Summary (PCS) score was lower than the Mental Composite Summary (MCS) (38.1±12.9 vs 46.5±11.8). Across the eight dimensions, each individual decade- and sex-adjusted Z-score (using the normative data of USA population) in patients with PAI was significantly higher than that of the other two AI subtypes (all p<0.05), although all Z-scores were still below 0. In multivariate analyses, patients were more likely to report a worse PCS score (<40) if they were women (OR: 3.3, CI 95%: 1.8–6.0), had SAI or GIAI (OR: 2.5, CI 95%: 1.4–4.3), had shorter duration of AI (<6 years) (OR: 2.0, CI 95%: 1.1–3.6), were treated with >25 mg hydrocortisone equivalent daily (OR: 2.3, CI 95%: 1.2–4.6), had more comorbidities related to GC excess (OR: 2.3, CI 95%: 1.3–4.0), reported higher financial burden due to AI (OR: 2.1, CI 95%: 1.3–3.6), and reported difficulties with AI management (OR: 2.5, CI 95%: 1.2–5.2). Women (OR: 2.1, CI 95%: 1.08–4.0), shorter duration of AI (OR: 2.4, CI 95%: 1.4–4.3), higher financial burden due to AI (OR: 2.3, CI 95%: 1.3–4.0), reporting difficulties with AI management (OR: 2.6, CI 95%: 1.4–4.9), and lack of family support during adrenal crisis (OR: 9.1, CI 95%: 2.3–33.3), were predictors of a worse MCS score (<40). Conclusions: Patients with AI have substantially impaired QoL despite GC replacement therapy. Certain determinants of QoL are modifiable and achievable, such as avoiding GC over-replacement, offering detailed hands-on education in self-management, more comprehensive insurance coverage, and more robust domestic support. Our study calls for a multidimensional effort from patients, clinicians, and society to improve QoL in this vulnerable patient population.

scholarly journals MON-164 Determinants of Quality of Life in Primary and Secondary Adrenal Insufficiency from Two Large Tertiary Care Centers in the United States

2020 ◽  
Vol 4 (Supplement_1) ◽  
Author(s):  
Dingfeng Li ◽  
Natalia Genere ◽  
Majlinda Xhikola ◽  
Emma Behnken ◽  
Tiffany Abbondanza ◽  
...  
Keyword(s):  
Quality Of Life ◽  
United States ◽  
Adrenal Insufficiency ◽  
The United States ◽  
Comfort Level ◽  
Adrenal Crisis ◽  
Secondary Adrenal Insufficiency ◽  
Number Of Patients ◽  
Duration Of Disease

Abstract Background: Patients with primary adrenal insufficiency (PAI) and secondary adrenal insufficiency (SAI) report impaired quality of life. Predictors of adverse outcomes include duration of disease, supraphysiologic glucocorticoid (GC) use, and presence of other comorbidities. There is limited evidence to suggest that quality of life is disproportionately affected in one subtype of adrenal insufficiency. Objective: To identify determinants of quality of life in patients with PAI vs SAI. Method: Survey study of patients with the diagnosis of AI between 2015 and 2019 was evaluated at two large tertiary medical centers in the United States. Collected variables included data on circumstances of AI diagnosis, symptoms, management, burden of disease, and overall well-being. Patients with AI due to exogenous glucocorticoid use were excluded. Results: Patients with PAI (n=310, 65% women) were diagnosed at a younger age (37 ± 19 vs 48 ± 16 years, p<.01) than patients with SAI (n=255, 57% women). Patients with SAI were more likely not to understand their diagnosis (13% vs 4% in PAI, p<.01), or to report a discordant diagnosis (16% vs 9% in PAI, p=.02). Patients with PAI were on a higher dose of daily GC (23.8 mg vs 18.5 mg hydrocortisone (HC) equivalent, p <.01), with higher number of patients on HC> 25 mg/day (33% vs 15%, p<.01). Patients with PAI reported a higher compliance with wearing medical alert ID (79% vs 64%, p=.01) and higher availability of injectable GC (74% vs 58%, p<.01). Patients with PAI reported a higher frequency of at least one adrenal crisis within the last 12 months that required self- injectable GC (32% vs 16%, p<.01), or prompted ER visits (56% vs 29%, p<.01) compared to those with SAI. Nevertheless, patients with PAI were more likely to report good general health (78% vs 65% in SAI, p<.01). When adjusted for current age, sex, duration of disease, supraphysiologic GC use, number of current symptoms and recent adrenal crises, patients with SAI had HR of 2.6 (CI 95% 1.5-4.3) for poor health, 1.6 (CI 95% 0.95-2.8) for physical limitations, 1.7 (CI 95% 1.1-2.7) for fatigue, and 2.7 (CI 95% 1.5-4.9) for social limitations compared to those with PAI. Conclusions: Patients with PAI receive higher daily GC and experience a higher number of adrenal crises when compared to patients with SAI. However, patients with PAI report a better general perception of health, possibly due to a more robust knowledge of their disease and higher comfort level managing AI. More effort is needed to ensure patients with AI are appropriately educated regarding their medical condition and therapy.

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

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.

scholarly journals Determinants of Self-reported Health Outcomes in Adrenal Insufficiency: A Multisite Survey Study

2020 ◽  
Author(s):  
Dingfeng Li ◽  
Natalia Genere ◽  
Emma Behnken ◽  
Majlinda Xhikola ◽  
Tiffany Abbondanza ◽  
...  
Keyword(s):  
Health Outcomes ◽  
Adrenal Insufficiency ◽  
Perceived Health ◽  
Adverse Outcomes ◽  
Survey Study ◽  
Self Management ◽  
Current Evidence ◽  
Adrenal Crisis ◽  
Cross Sectional Survey ◽  
Prompt Treatment

Abstract Context Current evidence on determinants of adverse health outcomes in patients with adrenal insufficiency (AI) is scarce, especially in regards to AI subtypes. Objective To determine predictors of adverse outcomes in different subtypes of AI. Design and Setting Cross-sectional survey study at 2 tertiary centers. Participants A total of 696 patients with AI: primary AI (PAI, 42%), secondary AI (SAI, 32%), and glucocorticoid-induced AI (GIAI, 26%). Intervention Patient-centered questionnaire. Main Outcome Measures Patients’ knowledge, self-management of AI, self-perceived health, and adverse outcomes. Results The incidence rate of adrenal crisis was 24/100 patient-years with 44% experiencing at least 1 adrenal crisis since diagnosis (59% in PAI vs 31% in SAI vs 37% in GIAI, P < .0001). All patients described high degrees of discomfort with self-management and receiving prompt treatment. Patients with PAI were most likely to develop adrenal crises (adjusted OR 2.8, 95% CI 1.9-4.0) despite reporting better self-perceived health (adjusted OR 3.3, 95% CI 2.1-5.3), understanding of their diagnosis (89% vs 74-81% in other subtypes, P = .002), higher comfort with self-management (62% vs 52-61% in other sub types, P = .005), and higher likelihood to receive prompt treatment for adrenal crises in the emergency department (42% vs 19-30% in other subtypes, P < .0001). Conclusions Patients with AI reported high degrees of discomfort with self-management and treatment delays when presenting with adrenal crises. Despite better self-perceived health and understanding of diagnosis, patients with PAI experienced the highest frequency of adrenal crises. A multidimensional educational effort is needed for patients and providers to improve the outcomes of all subtypes of AI.

scholarly journals Impact of informal cancer caregiving across the cancer experience: A systematic literature review of quality of life

2019 ◽  
Vol 18 (2) ◽  
pp. 220-240 ◽  
Author(s):  
Carol Y. Ochoa ◽  
Natasha Buchanan Lunsford ◽  
Judith Lee Smith
Keyword(s):  
Quality Of Life ◽  
Literature Review ◽  
Systematic Literature Review ◽  
Active Treatment ◽  
Financial Burden ◽  
The United States ◽  
Original Research ◽  
Cancer Caregivers

AbstractObjectiveInformal caregiving may likely increase as the number of cancer survivors grows. Caregiving responsibilities can impact caregivers’ quality of life (QOL). Understanding the current state of the science regarding caregiving QOL could help inform future research and intervention development.MethodsA systematic literature review in PubMed/Medline examined research on QOL among informal cancer caregivers and related psychosocial health outcomes. Original research articles in English, published between 2007 and 2017 about caregivers (aged >18 years) of adult cancer patients in the United States were included. Abstracted articles were categorized according to caregiving recipient's phase of survivorship (acute, middle to long-term, end of life/bereavement).ResultsOf 920 articles abstracted, 60 met inclusion criteria. Mean caregiver age ranged from 37 to 68 with the majority being female, non-Hispanic white, with at least a high school degree, and middle income. Almost half of the studies focused on caregivers who provided care for survivors from diagnosis through the end of active treatment. Studies examined physical health, spirituality, psychological distress, and social support. Differences in QOL were noted by caregiver age, sex, and employment status.Significance of ResultsAdditional research includes the examination of the needs of diverse cancer caregivers and determines how additional caregiver characteristics (e.g., physical functioning, financial burden, etc.) affect QOL. This includes studies examining caregiver QOL in the phases following the cessation of active treatment and assessments of health systems, support services, and insurance to determine barriers and facilitators needed to meet the immediate and long-term needs of cancer caregivers.

Impact of quality of life on employment and marital status in long-term cancer survivors treated in a referral center in Mexico.

2018 ◽  
Vol 36 (7_suppl) ◽  
pp. 122-122
Author(s):  
Yuly Andrea Remolina Bonilla ◽  
Alejandra Armengol Alonso ◽  
Raul Rogelio Trejo rosales
Keyword(s):  
Quality Of Life ◽  
Cancer Survivors ◽  
Cancer Treatment ◽  
Marital Status ◽  
Financial Burden ◽  
Metastatic Cancer ◽  
Multivariate Logistic Regression Analysis ◽  
The United States ◽  
History Of

122 Background: Worldwide there is an increasing number of cancer survivors (CS); in the United States in 2016 there were more than 15 million CS and are predicted to increase to 20 million in 2026. In Mexico (GLOBOCAN 2012), new cancer cases were 148.000 and at least 69.000 will survive. Therefore, it is necessary to focus on cancer survivor’s quality of life (QOL) and its effects in social aspects. Methods: A cross-sectional study was performed including 205 CS with history of non-metastatic cancer (aged ≤65 years, ≥ 2 years from diagnosis and off chemo- or radiotherapy). The QOL-CS questionnaire developed by City of Hope Medical Center was used to measure QOL. Participants reported employment and marital status changes during or after cancer treatment. The aim of this study was to evaluate QOL in CS and its association with employment and marital status. A multivariate logistic regression analysis was conducted to estimate odds ratios (OR). Results: Of the 205 CS 70.2% were women and 29.8% men. Median age at the time of the study was 56 years. Median survival time from diagnosis was 83.6 months. 37.1% had history of invasive breast, 18% colorectal and 8.8% testicular cancers. Disease-related marital status changes presented in 15.6%, 26.8% lost or changed work and 36.6% decreased their work hours. Distress about initial diagnosis, cancer treatment, family and financial burden had the worst score in the QOL-CS. We found no differences in QOL between gender, income, age at diagnosis or type of tumor, but having received chemotherapy was associated with worst QOL (OR 7.33 CI 95% 1.99-26.96 p = 0.003) as well as self-reported neuropathy (OR 2.34 CI 95% 1.06-5.19 p = 0.032). Those with low QOL-CS scores (≤6) were more likely to have a disease-related change in employment (OR 2.34 CI 95% 1.19-4.61 p = 0.014). Disease-related marital status changes were higher in who experienced work status variations (OR 3.87 CI 95% 1.21-12.4 p = 0.023). Conclusions: this is one of the first studies in Mexican CS that associate QOL with relevant social roles. In this cohort having received chemotherapy has the greatest impact in QOL. CS with low QOL were more likely to have changes in employment and therefore, in the marital status.

scholarly journals The Quality of Life, Psychological Health, and Occupational Calling of Korean Workers: Differences by the New Classes of Occupation Emerging Amid the COVID-19 Pandemic

2020 ◽  
Vol 17 (16) ◽  
pp. 5689
Author(s):  
Young-Jae Kim ◽  
Seung-Woo Kang
Keyword(s):  
Quality Of Life ◽  
Psychological Health ◽  
Short Form ◽  
Well Being ◽  
The United States ◽  
Online Questionnaire ◽  
Medical Needs ◽  
The Usa ◽  
The Government

This study aimed to create new classifications for occupations that have emerged from the COVID-19 pandemic in Korea, based on Reich’s classifications for the United States. We examined Korean workers’ occupational calling, psychological health, and quality of life. An online questionnaire was administered and data from 1029 Korean workers were analyzed. The questionnaire comprised the Korean version of the Multidimensional Calling Measure to assess occupational calling, the Psychosocial Well-being Index-short form for psychological health, and the Control, Autonomy, Self-realization, and Pleasure (CASP-19) scale for quality of life. We created a Korean-adapted version of the classes of occupation based on those created by the COVID-19 situation in the USA. Our results showed that Korean workers had a high perceived calling to work, and different classes showed different levels of quality of life and psychological health. We need a health concentration management system for essential groups or personal safety protection equipment should be provided. Education on infection control should be offered and effective medical system processes should be in place. We need to develop technology to respond to medical needs online, remotely, or telephonically. The government should implement policies to ensure job security and to improve wages and welfare.

scholarly journals Would Cortisol Measurements Be a Better Gauge of Hydrocortisone Replacement Therapy? Congenital Adrenal Hyperplasia as an Exemplar

2020 ◽  
Vol 2020 ◽  
pp. 1-9
Author(s):  
Peter C Hindmarsh ◽  
John W Honour
Keyword(s):  
Quality Of Life ◽  
Congenital Adrenal Hyperplasia ◽  
Adrenal Insufficiency ◽  
Replacement Therapy ◽  
Plasma Cortisol ◽  
Poor Quality ◽  
Adrenal Hyperplasia ◽  
Mortality And Morbidity ◽  
Glucocorticoid Replacement Therapy

There is an increase in mortality and morbidity as well as poor quality of life in patients with congenital adrenal hyperplasia (CAH) and other causes of adrenal insufficiency. Glucocorticoid replacement therapy should aim to replace the missing cortisol as close as possible to the normal circadian rhythm using hydrocortisone. Dosing should be based on the individual’s absorption and clearance of the drug. Adequacy of dosing should be checked using 24-hour profiles of plasma cortisol with samples drawn preferably every hour or at least every 2 hours. Measurement of cortisol should be the preferred method of assessing replacement therapy as it is over- and undertreatment with hydrocortisone, both of which can occur over a 24-hour period, which leads to the problems observed in patients with CAH and adrenal insufficiency.

scholarly journals Markedly Improved Success Rate of Endoscopically Assisted Third Ventriculostomy Is Achieved by Routine Placement of External Lumbar Drain

2017 ◽  
Vol 78 (02) ◽  
pp. e71-e76
Author(s):  
Justen Watkins ◽  
Marc Cabanne ◽  
Dan Miulli
Keyword(s):  
Quality Of Life ◽  
Success Rate ◽  
Financial Burden ◽  
The United States ◽  
Multicenter Trial ◽  
Third Ventriculostomy ◽  
Success Rates ◽  
Lumbar Drain ◽  
Life Issues

AbstractHydrocephalus is a major cause of patient decreased quality of life and high health care financial burden in the United States and throughout the world. The placement of ventricular shunts (ventriculoperitoneal shunt) has proven to be a safe treatment for hydrocephalus, but it is associated with a high complication rate leading to a lower quality of life and continued financial burden for patients, their families, and society as a whole. The endoscopically assisted third ventriculostomy (ETV) has been practiced as an alternative to ventricular shunting since the 1990s. Success rates vary widely and there are many factors which contribute to the varying success rates. The ETV procedure has the potential to alleviate much of the overall quality of life issues and some of the financial burdens associated with hydrocephalus provided success rates can be increased and the procedure and management techniques are adopted more widely. Common techniques have been published in the past which report associated improvements in success rates amongst individual surgeons. Here, we report a novel perioperative technique and management strategy that displays a higher than reported success rate. Our methods and results show potential to significantly improve overall ETV success rates if reproduced and subsequently adopted widely. We retrospectively studied records of 24 adult patients with hydrocephalus who were treated with an ETV procedure. Routinely, we placed an external lumbar drain postoperatively which was continued for a minimum of 2 days. There was a 95.8% success rate at 30 days. The overall success rate was 83.3%. This is significantly higher than the average of the predicted success scores calculated by the ETV success scoring system (71.8%). It is also significantly higher than previous studies' reported ETV success rates in adults. We propose additional similar studies to be performed to test the reproducibility of increased success rates using our technique, ideally through a prospective, randomized, multicenter trial.

scholarly journals Unilateral Adrenalectomy Could Be a Valid Option for Primary Nodular Adrenal Disease: Evidence From Twins

2018 ◽  
Vol 3 (1) ◽  
pp. 129-134 ◽  
Author(s):  
Aglaia Kyrilli ◽  
Maria Lytrivi ◽  
Marie Sylvie Bouquegneau ◽  
Pieter Demetter ◽  
Valerio Lucidi ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Weight Gain ◽  
Disease Control ◽  
Adrenal Insufficiency ◽  
Photon Emission ◽  
Current Evidence ◽  
Unilateral Adrenalectomy ◽  
Mild Phenotype ◽  
Adrenal Disease

Abstract Primary pigmented nodular adrenal disease (PPNAD) accounts for <1% of ACTH-independent Cushing syndrome. We describe the case of twin female patients with PPNAD who both had sustainable disease control after unilateral adrenalectomy, which corroborates current evidence in favor of unilateral adrenalectomy for a subset of patients with PPNAD. Patient A presented with a 10-kg weight gain over the past year and facial plethora. Diagnostic evaluation revealed abolition of normal cortisol rhythm with suppressed ACTH levels, normal adrenal CT and MRI imaging and a slightly left-predominant adrenal uptake on 131I iodomethyl norcholesterol scintigraphy coupled with single-photon emission CT/CT. PPNAD was confirmed after genetic testing revealed a known pathogenic PRKA1A mutation (c.709 (-7-2) del6). At that time, her twin sister (patient B) was asymptomatic. Patient A underwent successful unilateral adrenalectomy and histology confirmed PPNAD. Two years after initial onset of symptoms in patient A, patient B was seen for the same subtle symptoms of progressive weight gain. Diagnostic test results were identical, revealing the same clinical features and mutational status as patient A. Patient B also underwent unilateral adrenalectomy with a favorable outcome. Follow-up 3 years after surgery for patient A and 18 months for patient B showed sustained disease control without recurrence and uncompromised quality of life, with no adrenal insufficiency having occurred. Unilateral adrenalectomy can be a successful therapeutic approach for patients with PPNAD with a mild phenotype without the risk and the inconvenience of subsequent adrenal insufficiency, which alters quality of life.

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