Assessing Health-Related Quality of Life in the Greek Home Health Care Setting

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.

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

10.21203/rs.3.rs-842097/v1 ◽

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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Association Between Functional Health Literacy and Postoperative Recovery, Health Care Contacts, and Health-Related Quality of Life Among Patients Undergoing Day Surgery

JAMA Surgery ◽

10.1001/jamasurg.2018.0672 ◽

2018 ◽

Vol 153 (8) ◽

pp. 738 ◽

Cited By ~ 31

Author(s):

Maria Hälleberg Nyman ◽

Ulrica Nilsson ◽

Karuna Dahlberg ◽

Maria Jaensson

Keyword(s):

Quality Of Life ◽

Health Care ◽

Day Surgery ◽

Postoperative Recovery ◽

Functional Health ◽

Functional Health Literacy ◽

Health Related Quality ◽

Related Quality ◽

Health Related

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Quality of sleep and health-related quality of life among health care professionals treating patients with coronavirus disease-19

International Journal of Social Psychiatry ◽

10.1177/0020764020942800 ◽

2020 ◽

pp. 002076402094280 ◽

Cited By ~ 4

Author(s):

Jelena Stojanov ◽

Marina Malobabic ◽

Goran Stanojevic ◽

Milos Stevic ◽

Vuk Milosevic ◽

...

Keyword(s):

Quality Of Life ◽

Health Care ◽

Mental Status ◽

Health Care Professionals ◽

Short Form ◽

Health Related Quality ◽

Quality Of Sleep ◽

Related Quality ◽

Health Related

Background: Health care professionals exposed to coronavirus disease 2019 (COVID-19) are facing high levels of stress. Aim: The aim was to evaluate the quality of sleep (QoS) and health-related quality of life (HRQoL), among health care professionals treating patients with COVID-19, as well as quantifying the magnitude of symptoms of depression and levels of anxiety. Methods: We included 201 health care professionals in a cross-sectional, web-based study by applying 7-item Generalized Anxiety Disorder (GAD-7) Scale, Zung Self-rating Depression Scale, 36-item Health Survey of the Medical Outcomes Study Short Form (SF36), Pittsburgh Sleep Quality Index (PSQI) and additional survey constructed for the purpose of the study. Results: Health care workers who treated COVID-19 patients were more afraid of becoming infected or of transmitting the infection to a family member with a significantly low self-assessment of their mental status. Poor QoS and HRQoL correlated with high health anxiety and severe depressive symptoms and several demographic characteristics. Multiple linear regression analysis showed that higher scores on GAD-7 (beta = .71, p < .01) and lower scores on mental health (MH) subscale on SF36 questionnaire (beta = –.69; p < .01) were independent predictors of the higher PSQI score (adjusted R2 = .61, p < .01 for overall model). Higher scores on GAD-7 (beta = .68, p < .01) and worse self-perceived mental status (beta = .25; p < .05) were independent predictors of the lower SF36 scores (adjusted R2 = .73, p < .01 for overall model). Conclusion: The major MH burden of health care professionals treating infected patients during the COVID-19 pandemic indicates that they need psychological support.

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