scholarly journals Updates in rare and not-so-rare complications of acromegaly: focus on respiratory function and quality of life in acromegaly

F1000Research ◽  
2020 ◽  
Vol 9 ◽  
pp. 791
Author(s):  
Fabienne Langlois ◽  
Gabriela M. Suarez ◽  
Maria Fleseriu
Keyword(s):  
Quality Of Life ◽  
Growth Hormone ◽  
Complex Disease ◽  
Current Knowledge ◽  
Sleep Apnea Syndrome ◽  
Poor Quality ◽  
Patient Treatment ◽  
Major Treatment

Acromegaly is a complex disease with excessive growth hormone and insulin-like growth factor 1 (IGF-1) causing multisystem effects, particularly cardiovascular, respiratory, and metabolic. Psychological concerns and poor quality of life (QoL) are also major disease consequences. This review is intended for clinicians and focuses on the latest developments related to respiratory and QoL effects of long-term growth hormone excess. Along with biochemical disease control, patient treatment satisfaction and outcomes have become major treatment objectives; current knowledge and tools to evaluate and manage this aspect of the disease are described. Sleep apnea syndrome and other derangements of lung function and apparatus, from pathophysiology to treatment, and evaluation tools and determinants of QoL in patients with acromegaly are discussed.

scholarly journals Multicenter, Observational Study of Lanreotide Autogel for the Treatment of Patients with Acromegaly in Routine Clinical Practice in Germany, Austria and Switzerland

2020 ◽  
Author(s):  
Sylvère Störmann ◽  
Jochen Schopohl ◽  
Catharina Bullmann ◽  
Christoph Terkamp ◽  
Mirjam Christ-Crain ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Growth Hormone ◽  
Growth Factor ◽  
Real World ◽  
Insulin Like Growth Factor ◽  
Biochemical Control ◽  
Factor I ◽  
Lanreotide Autogel

Abstract Background Evidence from controlled trials has shown that lanreotide autogel is effective in achieving biochemical and symptom control in patients with acromegaly. However, it is important to better understand the real-world patient population receiving lanreotide autogel treatment. Methods In this non-interventional study the long-term treatment response to lanreotide autogel in adult patients with acromegaly from office-based centers or clinics in Germany, Austria and Switzerland was studied. Assessments included growth hormone and insulin-like growth factor-I levels, symptoms, quality of life, lanreotide plasma levels and tumor somatostatin receptor subtype expression. The primary endpoint was achievement of full biochemical control, defined as growth hormone ≤2.5 µg/L and insulin-like growth factor I normalization at month 12. Results 76 patients were enrolled from 21 sites. 7/51 (13.7%) patients of the efficacy population had full biochemical control at baseline, 15/33 (45.5%) at month 12 and 10/26 (38.5%) at month 24 of treatment. At 12 months of treatment higher rates of biochemical control were observed in the following subgroups: older patients (>53 years [median]), females, treatment-naïve patients, and patients with a time since diagnosis of longer than 1.4 years (median). No clinically relevant differences in acromegaly symptoms or quality of life scores were observed. Median fasting blood glucose and glycated hemoglobin levels remained unchanged throughout the study. No new safety signals were observed. Overall tolerability of treatment with lanreotide autogel was judged by 80.8% of the enrolled patients at month 12 as ‘very good’ or ‘good’. Conclusion Treatment with lanreotide autogel in a real-world setting showed long-term effectiveness and good tolerability in patients with acromegaly.

Long-term symptom burden and quality of life in metastatic melanoma patients treated with checkpoint inhibitors.

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. e23090-e23090
Author(s):  
Maha Mamoor ◽  
Jessica A. Lavery ◽  
Robert Sidlow ◽  
Lauren J. Rogak ◽  
Bridgette Thom ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Metastatic Melanoma ◽  
Median Time ◽  
Checkpoint Inhibitors ◽  
Symptom Burden ◽  
Patient Treatment ◽  
Cancer Center ◽  
Cross Sectional Survey

e23090 Background: Patients with metastatic melanoma (MMel) who achieve durable long-term responses to checkpoint inhibitors (CI) represent a new type of cancer survivor, but their long-term quality of life (QOL) is poorly described. We measured symptom burden and long-term QOL in MMel patients treated with CIs at Memorial Sloan Kettering Cancer Center (MSK). Methods: Between February and August 2018 we performed a cross-sectional survey of adult patients with MMel treated with CI at MSK beginning at least 12 months prior to this study. Surveys were self-administered online using RedCap. We assessed patient treatment experience and QOL using the PRO-CTCAE bank, EORTC, EQ-5D, and Fatigue Severity Scale. We performed chart abstraction to assess extent of cancer burden, ECOG status, Charlson Comorbidity Index (CCI), concurrent medical conditions, and immune-related adverse events (irAEs) developing during or after treatment. For analysis, we dichotomized age (< 65 vs ≥65) and months from CI initiation (< 25 vs ≥25). Results: We enrolled 107 patients (39% survey response rate); 106 completed surveys. Participants were 57.0% male and 93.5% white, with median age 60.5 years (IQR: 51.1, 67.5 years). 79.4% had a CCI of 0 at start of CI; preexisting autoimmune disorders were rare. Median time since CI initiation was 36.4 months (range: 14.2, 133.9 months). Median length of CI treatment was 7.3 months (IQR: 2.1, 24.3 months); 15 patients were on treatment at the time of survey completion. Among those off treatment at the time of survey completion, median time off treatment was 27.1 months (IQR: 16.7, 40.4 months). The most common irAEs were rash (34.6%), colitis (24.3%), thyroiditis (19.6%), hepatitis (18.7%), and hypophysitis (13.1%). irAEs did not differ by age. Few patients reported symptoms at time of survey, most commonly aching joints (18%), fatigue (14%), aching muscles (13%), and difficulty sleeping (11%). Few (< 12%) had difficulty with physical, role, emotional, cognitive, or social functioning and almost none (1%) reported anxiety, depression or pain on the EQ-5D. QOL was excellent, with a median of 83.3% on the EQ-5D global health score and no differences based on toxicities or time from treatment. Conclusions: Long-term survivors of MMel patients report few burdensome symptoms after CI therapy and have excellent QOL.

scholarly journals The Association between Hope and Quality of Life among Adolescents with Chronic Diseases: A Systematic Review

2020 ◽  
Vol 26 (3) ◽  
pp. 323-328
Author(s):  
Ai Mardhiyah ◽  
Koshy Philip ◽  
Henny Suzana Mediani ◽  
Iyus Yosep
Keyword(s):  
Quality Of Life ◽  
Chronic Diseases ◽  
English Language ◽  
Protective Factor ◽  
Current Knowledge ◽  
Future Studies ◽  
Long Term Impact ◽  
The Relationship

Purpose: Hope has been identified as a protective factor that contributes to achieving a better quality to life, especially in patients with chronic disease. The purpose of this review was to synthesize current knowledge about the relationship between hope and quality of life among adolescents living with chronic illnesses.Methods: We searched major English-language databases (PsycINFO, PubMed, and CINAHL) for studies from January 1, 2002 to July 12, 2019. Studies were included if they provided data on hope and its relationship with quality of life among adolescents with chronic diseases.Results: In total, five articles were selected from the 336 studies that were retrieved. All five studies reported a positive correlation between hope and quality of life, such that people with a higher level of hope had a better quality of life. Hope was found to have direct and indirect effects on quality of life in adolescents with chronic diseases.Conclusion: Healthcare professionals should make more efforts to enhance hope in adolescents with chronic diseases in order to improve their quality of life. Future studies exploring how hope develops in adolescents with chronic diseases and the long-term impact of hope on quality of life are necessary.

PROFIL KUALITAS HIDUP DAN TEKANAN DARAH PASIEN HIPERTENSI RAWAT JALAN DI RSUD ULIN BANJARMASIN

2018 ◽  
Vol 4 (2) ◽  
pp. 106
Author(s):  
Riza Alfian ◽  
Nani Lisdawati ◽  
Aditya Maulana Perdana Putra ◽  
Ratih Pratiwi Sari ◽  
Fahma Lailani
Keyword(s):  
Quality Of Life ◽  
Blood Pressure ◽  
Poor Quality ◽  
Term Treatment ◽  
Survey Method ◽  
Inclusion Criteria ◽  
Long Term Treatment ◽  
Blood Pressure Data

Hypertension is one of the main factors of coronary heart disease and stroke. The prevalence of hypertension in South Kalimantan Province occupied a second prevalence of 30,8%. Hypertension is a chronic disease that requires long-term treatment. Furthermore, long-term treatment of anti-hypertension patients also have the possibility of side effects that also affect the quality of life of patients. Uncontrolled blood pressure can aggravate the incidence of hypertension and develop into a more dangerous disease that affects the quality of life of patients. The purpose of this study was to determine the description of blood pressure and quality of life of outpatient hypertensive patients at RSUD Ulin Banjarmasin. This research was conducted by using survey method. Sampling was done by consecutive sampling method. Samples meeting the inclusion criteria were 61 patients. The sample inclusion criteria were outpatients ages 18-65 with hypertension diagnoses, and were willing to follow the study. Exclusion criteria were patients with uncooperative, illiterate and deaf conditions. Data collection was done by interviewing and filling out the EQ-5D questionnaire. Blood pressure data were taken from medical records. The data of the research are presented in descriptive form. Based on this research can be concluded that the value of systolic blood pressure and diastolic mean of research sample is 153,82 ± 17,62 and 86,16 ± 10,52 mmHg. The study sample was dominated by patients with level II hypertension (52,5%). Furthermore the quality of life of the average sample was dominated by the category of poor quality of life (73,8%).

scholarly journals Long-term outcomes after critical illness: recent insights

Critical Care ◽  
2021 ◽  
Vol 25 (1) ◽  
Author(s):  
Anne-Françoise Rousseau ◽  
Hallie C. Prescott ◽  
Stephen J. Brett ◽  
Björn Weiss ◽  
Elie Azoulay ◽  
...  
Keyword(s):  
Public Health ◽  
Quality Of Life ◽  
Intensive Care ◽  
Current Knowledge ◽  
Hospital Readmissions ◽  
Long Term Outcomes ◽  
Health Related ◽  
Post Intensive Care Syndrome

AbstractIntensive care survivors often experience post-intensive care sequelae, which are frequently gathered together under the term “post-intensive care syndrome” (PICS). The consequences of PICS on quality of life, health-related costs and hospital readmissions are real public health problems. In the present Viewpoint, we summarize current knowledge and gaps in our understanding of PICS and approaches to management.

scholarly journals Diagnosis and Management of Neuroendocrine Disorders of Survivors of Brain Tumors

2021 ◽  
pp. 1-9
Author(s):  
Dana Erickson ◽  
Diane Donegan
Keyword(s):  
Quality Of Life ◽  
Growth Hormone ◽  
Brain Tumors ◽  
Hormone Deficiency ◽  
Adult Growth ◽  
Adults And Children ◽  
Receive Treatment ◽  
High Level

Advances in the treatment of brain tumors have led to an increase in the number of survivors of this disease. Consequently, the long-term complications associated with past and current treatments are becoming more apparent. Of relevance to patients who receive treatment of brain tumors are the potential neuroendocrine complications that develop either acutely or several years following treatment. Presentation may differ between adults and children (e.g., short stature or adult growth hormone deficiency) but in both settings can complicate treatment and impact quality of life. The risk for the development of these complications depends on the location of the tumor (proximity to the pituitary/hypothalamus) and/or the treatment delivered (chemotherapy/surgery/radiation). Given the potential overlap in symptoms attributable to the underlying brain tumor and neuroendocrine dysfunction, a high level of suspicion, appropriate investigation, and administration of treatment may reduce morbidity and mortality for patients with brain tumors experiencing neuroendocrine dysfunction.

scholarly journals Recognising and understanding cryopyrin-associated periodic syndrome in adults

2019 ◽  
Vol 28 (18) ◽  
pp. 1180-1186 ◽  
Author(s):  
René Williams ◽  
Philip Hawkins ◽  
Thirusha Lane
Keyword(s):  
Quality Of Life ◽  
Interleukin 1 ◽  
Poor Quality ◽  
Periodic Syndrome ◽  
Familial Cold Autoinflammatory Syndrome ◽  
Hereditary Autoinflammatory Diseases ◽  
Cinca Syndrome ◽  
Wells Syndrome

Cryopyrin-associated periodic syndrome (CAPS) is a group of rare hereditary autoinflammatory diseases characterised by recurrent flares of mild to severe systemic inflammation and fever. CAPS is the umbrella term for a spectrum of individual conditions, namely familial cold autoinflammatory syndrome (FCAS), Muckle-Wells syndrome (MWS) and neonatal-onset multisystem inflammatory disease (NOMID), also known as chronic infantile neurologic, cutaneous and articular (CINCA) syndrome. The flare symptoms include fever, fatigue, rashes, headaches, arthralgia and myalgia that can last for a few hours or for several days. These symptoms are debilitating, contributing to poor quality of life for patients if left untreated. Serious life-changing complications such as hearing loss, blindness and AA amyloidosis resulting in kidney failure can occur. Until recently, treatment of the disease was symptomatic using non-steroidal anti-inflammatory and immunosuppressant drugs with limited success. In contrast, biological treatments targeting interleukin 1 (IL-1) have proved remarkably effective, often associated with complete and sustained disease remission, vastly improved quality of life and avoidance of serious long-term complications.

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