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.

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 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.

Muscle dysfunction is associated with poor quality of life in patients with Cushing's syndrome long-term after remission

2019 ◽  
Author(s):  
Luciana Martel ◽  
Helena Bascunana ◽  
Jordi Cuartero ◽  
Betina Biagetti ◽  
Susan M. Webb ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cushing’S Syndrome ◽  
Poor Quality ◽  
Cushing's Syndrome ◽  
Muscle Dysfunction

scholarly journals Towards a greater understanding of the psychosocial impact of the symptoms of pituitary conditions

2021 ◽  
Vol 26 (5) ◽  
pp. 236-243
Author(s):  
Alison Norman ◽  
Sue Jackson ◽  
Hannah Ferrario ◽  
Nena Percuklievska ◽  
Pat McBride
Keyword(s):  
Quality Of Life ◽  
Significant Variation ◽  
Poor Quality ◽  
Anxiety And Depression ◽  
Regression Analyses ◽  
Social Difficulties ◽  
Patient Groups ◽  
Age Range

Management of pituitary conditions can be problematic with many patients experiencing long-term psychological and social difficulties that impact on their quality of life. This study aimed to identify psychosocial symptoms associated with pituitary conditions that lead to poor quality of life and identify differences in symptomatology between patient groups. A survey using measures of psychological and social symptoms was sent to 2000 members of the Pituitary Foundation in January 2016. The survey was completed by 1062 patients (683 female), aged under 18 to over 65 years, using categorical age ranges. Physical and psychosocial symptoms including appearance issues, fatigue, anxiety and depression were reported. Using correlational and regression analyses, significant variation in symptoms were identified across gender, age range and condition type that were impairing patients' long-term functioning and impacting quality of life. There is a need for greater patient information and advice surrounding psychosocial symptoms of pituitary conditions.

scholarly journals "Living in Hell": Experiences of Iranian Families Living with Patients with Schizophrenia

2021 ◽  
Author(s):  
Parviz Molavi ◽  
Saeid Sadeghieh-Ahary ◽  
Mohsen Rezaeian ◽  
Elmira Taghizadeh ◽  
Elhameh Nasiri ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Qualitative Content Analysis ◽  
Poor Quality ◽  
Main Category ◽  
Negative Effect ◽  
Need For Support ◽  
Tremendous Impact ◽  
Sense Of Shame

Abstract Background: In addition to bearing on the patients and public, schizophrenia has a tremendous impact on families and caregivers. Its negative consequence has been studied as a burden. In this study, by doing qualitative analysis, we examined the experiences of Iranian families within the Ardabil, Iran, living with patients with schizophrenia. Method: This research was a qualitative study, and data collection was done through an in-depth, unstructured interview. Twenty family members of patients with schizophrenia were interviewed, and data were analyzed by the conventional qualitative content analysis. Results: The major themes of the interviews were classified into 3-level codes. Six subthemes were found in the experiences of patients with schizophrenia families, namely stigma, sense of shame, isolation, need for support, and lack of awareness, and poor quality of life, which were combined and classified into one main category named "living in hell".Conclusions: The findings showed that schizophrenia has an impressive negative effect on the families' welfare; thus, it highlights the necessity to provide interventions to help them adapt to this disorder. The results also highlight that caring is more demanding for families of long-term disease patients.

Thinking Beyond Language: Intervention for Severe Aphasia

2009 ◽  
Vol 19 (1) ◽  
pp. 15-22 ◽  
Author(s):  
Nina Simmons-Mackie
Keyword(s):  
Quality Of Life ◽  
Communication Training ◽  
Language Intervention ◽  
Specific Training ◽  
Environmental Support ◽  
Total Communication ◽  
Communication Partners

Abstract Purpose: This article addresses several intervention approaches that aim to improve life for individuals with severe aphasia. Because severe aphasia significantly compromises language, often for the long term, recommended approaches focus on additional domains that affect quality of life. Treatments are discussed that involve increasing participation in personally relevant life situations, enhancing environmental support for communication and participation, and improving communicative confidence. Methods: Interventions that have been suggested in the aphasia literature as particularly appropriate for people with severe aphasia include training in total communication, training of communication partners, and activity specific training. Conclusion: Several intervention approaches can be implemented to enhance life with severe aphasia.

Long term follow-up in quality of life after mitral valve surgery

2012 ◽  
Vol 60 (S 01) ◽  
Author(s):  
I Kammerer ◽  
M Höhn ◽  
AH Kiessling ◽  
S Becker ◽  
FU Sack
Keyword(s):  
Quality Of Life ◽  
Mitral Valve ◽  
Mitral Valve Surgery ◽  
Valve Surgery ◽  
Long Term Follow Up
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