In the Eye of the Beholder

2020 ◽  
pp. 35-38
Author(s):  
Elissa G. Miller
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Palliative Care ◽  
Poor Prognosis ◽  
Life Assessment ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Patient Prognosis

Quality of life is an important part of health, health care, and disease management. As disease progresses, health-related quality of life often declines and may decline significantly. Patients with a poor prognosis for survival may choose to limit disease-directed therapy based on quality of life considerations. In pediatrics, parents are often asked to determine their child’s quality of life, and in palliative care, the quality of life assessment may be used to help establish goals of care and determine the medical plan of care. This chapter discusses quality of life, how to assess it, and how to combine quality of life with patient prognosis in order to determine a plan of care.

Long-Term Effectiveness of Fingolimod for Multiple Sclerosis in a Real-World Clinical Setting

2021 ◽  
pp. 1-6
Author(s):  
Cihat Uzunköprü ◽  
Yesim Beckmann ◽  
Sabiha Türe
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Real Life ◽  
Life Assessment ◽  
Health Related Quality ◽  
Serious Adverse Events ◽  
Related Quality ◽  
Health Related

<b><i>Introduction:</i></b> The primary aim of the present study was to evaluate the long-term efficacy of fingolimod in patients with multiple sclerosis (MS); secondary aims were to describe the safety of fingolimod with the evaluation of treatment satisfaction and impact on the quality of life in real life. <b><i>Methods:</i></b> We collected clinical, demographical, neuroradiological, and treatment data, including pre- and posttreatment status health-related quality of life from 286 MS patients consecutively treated with fingolimod. Clinical assessment was based on the Expanded Disability Status Scale (EDSS), and quality of life assessment was performed with MS-related quality of life inventory (MSQOLI). The data were recorded at baseline and every 6 months for 2 years. <b><i>Results:</i></b> One hundred and fourteen males and 172 females were enrolled. The annualized relapse rate and EDSS showed a statistically significant reduction during the observation period (<i>p</i> &#x3c; 0.001). The patients also demonstrated substantial improvements in magnetic resonance imaging (MRI) outcomes (<i>p</i> &#x3c; 0.001). Health-related quality of life scores improved significantly between baseline and 24-month visit (<i>p</i> &#x3c; 0.001). No serious adverse events occurred. <b><i>Conclusion:</i></b> In our cohort, fingolimod treatment was associated with reduced relapse, MRI activity, and improved EDSS and MSQOLI scores. Additionally, fingolimod has been able to maintain its effectiveness over a considerable long period of treatment.

Accuracy of health-related quality of life assessment: What is the benefit of incorporating patients' preferences for domain functioning?

2001 ◽  
Vol 20 (2) ◽  
pp. 136-140 ◽  
Author(s):  
Kristina G. Gorbatenko-Roth ◽  
Irwin P. Levin ◽  
Elizabeth M. Altamaier ◽  
Bradley N. Doebbeling
Keyword(s):  
Quality Of Life ◽  
Life Assessment ◽  
Health Related Quality ◽  
Quality Of Life Assessment ◽  
Related Quality ◽  
Health Related

scholarly journals Oral health-related quality of life in patients with X-linked hypophosphatemia: a qualitative exploration

2021 ◽  
Author(s):  
Caroline Nguyen ◽  
Elisabeth Celestin ◽  
Delphine Chambolle ◽  
Agnès Linglart ◽  
Martin Biosse Duplan ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Oral Health ◽  
Care Pathway ◽  
Clinical Signs ◽  
Oral Health Care ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Abstract Background. X-linked hypophosphatemia (XLH) is a rare, hereditary, and lifelong phosphate wasting disorder characterized by rickets in childhood and impaired teeth mineralization. In the oral cavity, spontaneous abscesses can often occur without any clinical signs of alteration of the causal tooth. The objective of our study was to evaluate the oral care pathway and the oral health-related quality of life (OHRQoL) of patients followed in an expert oral medicine department located within a Parisian hospital and working in close collaboration with an endocrinology department expert in this pathology. Methods. This study employed a qualitative descriptive design including semi-structured interviews using guiding themes. Results. Twenty-one patients were included in the study. The topics brought up exceeded the initial objectives as the patients mostly addressed the alteration of their oral and general quality of life; a very chaotic oral health care pathway with oral health professionals not aware of their pathology; consequences on their social, professional, and school integration; access to care complicated by financial factors. Patients declared the importance of having a multidisciplinary team around them, including medical and dental professionals.Conclusions. The variety of manifestations in patients with XLH necessitates a high coordination of multidisciplinary patient care to optimize quality of life and reduce disease burden. Oral health care pathways are very chaotic for patients who have difficulty finding professionals with sufficient knowledge of the disease. OHRQoL is therefore diminished. This situation improves when patients enter a coordinated care network.

scholarly journals Investigation on the Current Situation and Health-Related Quality of Life of Children and adolescents with OI in southwest China

2021 ◽  
Author(s):  
fanyan du ◽  
lin mo
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Children And Adolescents ◽  
Endocrine Therapy ◽  
Southwest China ◽  
Healthy Children ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Abstract Background: Osteogenesis imperfecta（OI）is a chronic, non-infectious disease that accompanies the patient for life. OI will result in reduced bone mass, fractures, thereby leading to bone deformities and reduced patient the health-related quality of life (HRQoL). With the endocrine therapy and surgical orthopedic had been recommended, the disease was effectively controlled. The disease status is discrepancy in different regions. This study aims to assess the diagnosis and treatment status, evaluate the HRQoL of children and adolescents with OI in southwest China, and analyze the influencing factors, so as to provide reference for health care consideration for OI population in southwest China.Methods: This cross-sectional study was performed using the Pediatric Quality of Life InventoryTM (PedsQL TM) to assess the HRQoL of children and adolescents with OI. The demographic and clinical data were collected. This study was conducted in Children’s Hospital of Chongqing Medical University, the National Children's Regional Medical Centre (SOUTH-WEST) and the National Clinical Research for child health. Healthy children and adolescents aged 2 to 18 years lived in southwest China as a reference.Results: A total of 27 children and adolescents with OI were included in this study. The current status of diagnosis and treatment such as the treatment, education, family, BMI, pain, steep walking and friends and so on had been investigated. The PedsQLTM of OI population was lower in all dimensions, and they were significantly different in physiological and social functioning and the total score, compared with 54 healthy children and adolescents. Factors associated with HRQoL of OI patients were the steep walking and fixing a playmate at less.Conclusions: The HRQoL of children and adolescents with OI had been improved with the endocrine therapy and surgical orthopedic. But there was an imbalance around the world for the less effective management. Health care education should be more professional, effectively and continuously. Training patients to gain steep walking ability and peer companionship could be a way to improve the HRQoL of children and adolescents with OI in southwest China. The medical staff also should pay attention to their life and growth after discharge.

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