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https://www.readbyqxmd.com/read/29667314/the-diary-of-a-nonagenarian-centenarian-woman-with-dementia-memory-loss-life-changes-and-community-care-in-japan
#1
Sayuri Suwa, Saori Otani, Mayuko Tsujimura, Kotoko Nogawa, Yoko Shiya
AIM: This study aimed to explore the experiences and thoughts of a nonagenarian-centenarian woman with dementia living alone, through detailed analysis of her unsolicited diary. DATA SOURCE: After receiving consent from Aki (a pseudonym), her family and caregivers, copies of her diaries, hand-written in Japanese, were provided for analysis. METHODS: The content of the diaries was broadly organized into themes and qualitative content analysis carried out for each theme along a sequential timeline...
April 2018: International Journal of Nursing Practice
https://www.readbyqxmd.com/read/29666126/domains-of-health-related-quality-of-life-in-age-related-macular-degeneration-a-qualitative-study-in-the-chinese-cultural-context
#2
Wei Bian, Junli Wan, Graeme Smith, Shiying Li, Mingqiong Tan, Fengjiao Zhou
OBJECTIVE: To explore which areas of health-related quality of life were affected in Chinese patients, and to identify whether the areas are well covered by validated questionnaires. DESIGN: A qualitative study based on semistructured interviews was conducted. A qualitative thematic analysis following the approach of Colaizzi was used to analyse the interview data for significant statements and phrases. The themes and subthemes organised from the analysis were then compared by using the following current instruments: National Eye Institute Visual Function Questionnaire (NEI-VFQ-25), Macular Disease Quality of life Questionnaire (MacDQoL) and Low-Luminance Questionnaire (LLD)...
April 17, 2018: BMJ Open
https://www.readbyqxmd.com/read/29664508/oral-self-mutilation-in-lesch-nyhan-syndrome-case-report
#3
Andrés Campolo González, Alex Vargas Díaz, Daniel Fontboté Riesco, Marta Hernández Chávez
INTRODUCTION: Lesch-Nyhan syndrome (LNS) is an inherited recessive X-related disorder caused by the deficiency of the enzyme hypoxanthin-guanine phosphorribosyl transferase (HPRT). Compul sive self-mutilation and dystonia occurs before the first year of age and is expressed by persistent bites on the oral mucosa, lips, tongue, fingers, and shoulders. The dental intervention performed on most of these patients is multiple tooth extraction to prevent serious secondary lesions. OBJECTIVE: To present a clinical case of LNS and describe pediatric dentistry management in patients with self-mutilating behavior...
February 2018: Revista Chilena de Pediatría
https://www.readbyqxmd.com/read/29664216/subgroups-of-dutch-homeless-young-adults-based-on-risk-and-protective-factors-for-quality-of-life-results-of-a-latent-class-analysis
#4
Astrid M Altena, Mariëlle D Beijersbergen, Jeroen K Vermunt, Judith R L M Wolf
It is important to gain more insight into specific subgroups of homeless young adults (HYA) to enable the development of tailored interventions that adequately meet their diverse needs and to improve their quality of life. Within a heterogeneous sample of HYA, we investigated whether subgroups are distinguishable based on risk- and protective factors for quality of life. In addition, differences between subgroups were examined regarding the socio-demographic characteristics, the use of cognitive coping strategies and quality of life...
April 17, 2018: Health & Social Care in the Community
https://www.readbyqxmd.com/read/29663815/canakinumab-as-monotherapy-for-treatment-of-familial-mediterranean-fever-first-report-in-central-and-eastern-europe-region
#5
M Jesenak, K Hrubiskova, L Kapustova, M Kostkova, P Banovcin
Autoinflammatory disorders (AID) are characterized by spontaneous attacks of acute inflammation with a broad spectrum of clinical symptoms. Ongoing inflammation and reoccurrence of acute flares can lead to the development of amyloidosis. One group of AID is represented by monogenic periodic fever syndromes while familial Mediterranean fever (FMF) is the most common form of AID from this group. Its prevalence in Central and Eastern Europe was reported to be very low. We report a case of FMF patient with a very severe clinical course of FMF and intolerance to colchicine, which is a gold standard for FMF treatment...
2018: Bratislavské Lekárske Listy
https://www.readbyqxmd.com/read/29663569/spiritual-and-religious-coping-and-depression-among-family-caregivers-of-pediatric-cancer-patients-in-latin-america
#6
Luciano Magalhães Vitorino, Luís Carlos Lopes-Júnior, Gabriela Hernandes de Oliveira, Mariane Tenaglia, Andressa Brunheroto, Paulo José Oliveira Cortez, Giancarlo Lucchetti
OBJECTIVE: Several studies have shown that spiritual/religious beliefs are associated with mental health and quality of life. However, so far, no study assessed the relationship between spiritual/religious coping (SRC) and depressive symptoms in family caregivers (FCs) of pediatric cancer patients, particularly in Latin America. This study aimed to investigate whether Positive and Negative SRC strategies are associated with depressive symptoms in FCs of pediatric cancer patients in Brazil...
April 16, 2018: Psycho-oncology
https://www.readbyqxmd.com/read/29661333/sleep-disorders-in-the-elderly
#7
REVIEW
Kathleen Yaremchuk
Although some physiologic changes in sleep are a normal part of the aging process, other sleep complaints made by elderly patients can indicate a primary or secondary sleep disorder. It is important to recognize the difference between normal age-related changes and what may require further testing to make an accurate diagnosis. Proper diagnosis and treatment of sleep disorders can improve the quality of life and safety for the elderly and their families.
May 2018: Clinics in Geriatric Medicine
https://www.readbyqxmd.com/read/29661332/voice-disorders-in-the-elderly
#8
REVIEW
Karen M Kost, Robert T Sataloff
Presbyphonia is more common than appreciated by most physicians, and it is associated with undesirable vocal characteristics such as hoarseness, weakness, breathiness, instability, and tremulousness. Hearing impairment in the patient or his or her friends, family, and associates exacerbates the problem, resulting in depression and social withdrawal, further reducing quality of life. Moreover, voice weakness and instability are all too often misinterpreted as reflecting intellectual instability. Expert diagnosis, medical treatment, voice therapy and training, and occasionally surgery usually can maintain or restore vocal stability and "youth...
May 2018: Clinics in Geriatric Medicine
https://www.readbyqxmd.com/read/29658817/racial-and-ethnic-differences-in-advance-care-planning-results-of-a-statewide-population-based-survey
#9
Melissa A Clark, Sharina D Person, Anna Gosline, Atul A Gawande, Susan D Block
BACKGROUND: Few studies have focused on racial and ethnic differences in advance care planning other than advance directives among population-based samples of adults across the lifespan. METHODS: Using data from a statewide random-digit dial telephone survey of adults 18 years or older (n = 1851), we investigated racial and ethnic differences in (1) designation of a healthcare agent (HCA); and (2) communication of goals, values, and preferences for end-of-life care with healthcare providers, a HCA, or other family members and friends...
April 16, 2018: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/29658754/family-rituals-in-pediatric-epilepsy-links-to-parental-competence-and-adaptation
#10
Teresa P Mendes, Carla A Crespo, Joan K Austin
This cross-sectional study examined the associations between family ritual meaning and 3 indicators of parental adaptation (anxious and depressive symptoms and quality of life) via 2 dimensions of parental competence-satisfaction and efficacy-in parents of children with epilepsy. Two hundred Portuguese parents of children diagnosed with epilepsy for at least 6 months completed self-report measures assessing the main study variables. Our results showed that when parents reported stronger family ritual meaning, they also reported higher levels of parental satisfaction and efficacy, which were in turn were associated with lower psychological distress (anxious and depressive symptoms) and better quality of life of parents...
March 2018: Journal of Family Psychology: JFP
https://www.readbyqxmd.com/read/29657210/refusal-of-hemodialysis-by-hospitalized-chronic-kidney-disease-patients-in-pakistan
#11
Salman Tahir Shafi, Mohammad Saleem, Roshina Anjum, Wajid Abdullah, Tahir Shafi
In Pakistan, patients with chronic kidney disease (CKD) are commonly diagnosed at a late stage. There is little information about the refusal of hemodialysis by hospitalized CKD patients who need hemodialysis (HD) and reasons for acceptance and refusal among these patients. All patients with Stage V CKD who had medical indications to undergo HD and were hospitalized at a tertiary care facility over a six-month period were invited to participate in this study. Patients were surveyed regarding acceptance or refusing of HD and reasons for their decisions...
March 2018: Saudi Journal of Kidney Diseases and Transplantation
https://www.readbyqxmd.com/read/29656703/the-ethics-of-concurrent-care-for-children-a-social-justice-perspective
#12
Kim Mooney-Doyle, Jessica Keim-Malpass, Lisa C Lindley
Recent estimates indicate that over 40,000 children die annually in the United States and a majority have life-limiting conditions. Children at end of life require extensive healthcare resources, including multiple hospital readmissions and emergency room visits. Yet, many children still suffer from symptoms at end of life-including fatigue, pain, dyspnea, and anxiety-with less than 10% of these children utilizing hospice care services. A critical barrier to pediatric hospice use was the original federal regulations associated with the hospice care that required a diagnosis of 6 months to live and the discontinuation of all curative treatments...
January 1, 2018: Nursing Ethics
https://www.readbyqxmd.com/read/29656405/the-cellie-coping-kit-for-children-with-injury-initial-feasibility-acceptability-and-outcomes
#13
M L Marsac, D Weiss, K L Kohser, J Van Allen, P Seegan, S Ostrowski-Delahanty, A McGar, F K Winston, N Kassam-Adams
PURPOSE: Physical and psychological challenges can arise from paediatric injury, which can impact child health outcomes. Evidence-based resources to promote recovery are limited. The low cost, portable Cellie Coping Kit for Children with Injury provides evidence-based strategies to help children manage injury-related challenges. This study aimed to describe intervention feasibility and explore initial outcomes (learning, quality of life [QOL], and trauma symptoms). METHODS: Three independent pilot studies were conducted...
April 15, 2018: Child: Care, Health and Development
https://www.readbyqxmd.com/read/29655942/pink1-p-k520rfsx3-mutation-identified-in-a-chinese-family-with-early-onset-parkinson-s-disease
#14
Peng Wang, Yi Guo, Chengyuan Song, Yiming Liu, Hao Deng
Parkinson's disease (PD) features selective loss of dopaminergic neurons of the substantia nigra pars compacta accompanied by the accumulation and aggregation of alpha-synuclein in Lewy bodies. PTEN induced putative kinase 1 gene (PINK1) mutations are the second most common genetic cause of autosomal recessive early-onset Parkinson's disease (EOPD). A single nucleotide deletion in PINK1 exon 8 (c.1557delG) was identified in a consanguineous Chinese family with EOPD. The homozygous deletion was co-segregated with disease in the family and resulted in a frameshift after codon 520 with a premature termination at codon 522 (p...
April 12, 2018: Neuroscience Letters
https://www.readbyqxmd.com/read/29655603/new-technologies-to-uncover-the-molecular-basis-of-disorders-of-sex-development
#15
REVIEW
Hayk Barseghyan, Emmanuèle C Délot, Eric Vilain
The elegant developmental biology experiments conducted in the 1940s by French physiologist Alfred Jost demonstrated that the sexual phenotype of a mammalian embryo depended whether the embryonic gonad develops into a testis or not. In humans, anomalies in the processes that regulate development of chromosomal, gonadal or anatomic sex result in a spectrum of conditions termed Disorders/Differences of Sex Development (DSD). Each of these conditions is rare, and understanding of their genetic etiology is still incomplete...
April 12, 2018: Molecular and Cellular Endocrinology
https://www.readbyqxmd.com/read/29653250/pluripotent-stem-cell-based-therapy-for-parkinson-s-disease-current-status-and-future-prospects
#16
REVIEW
Kai-C Sonntag, Bin Song, Nayeon Lee, Jin Hyuk Jung, Young Cha, Pierre Leblanc, Carolyn Neff, Sek Won Kong, Bob S Carter, Jeffrey Schweitzer, Kwang-Soo Kim
Parkinson's disease (PD) is one of the most common neurodegenerative disorders, which affects about 0.3% of the general population. As the population in the developed world ages, this creates an escalating burden on society both in economic terms and in quality of life for these patients and for the families that support them. Although currently available pharmacological or surgical treatments may significantly improve the quality of life of many patients with PD, these are symptomatic treatments that do not slow or stop the progressive course of the disease...
April 10, 2018: Progress in Neurobiology
https://www.readbyqxmd.com/read/29652948/-psychoactive-substances-use-and-health-related-quality-of-life-among-school-age-adolescents
#17
Fabiola Vilugrón Aravena, Carlos Alejandro Hidalgo-Rasmussen, Temístocles Molina G, María Eugenia Gras Pérez, Silvia Font-Mayolas
Background The use of psychoactive substances among adolescents is a major social and public health concern. Aim To analyze association of substance abuse and multiple drug use with health-related quality of life (HRQOL) in adolescents attending a high school in Valparaiso, Chile. Material and Methods Analytical cross-sectional study conducted in a sample of adolescents attending high school. HRQOL was assessed using KIDSCREEN-52 questionnaire and substance use was measured using the Global school-based student health survey...
December 2017: Revista Médica de Chile
https://www.readbyqxmd.com/read/29652406/individual-importance-weighting-of-domain-satisfaction-ratings-does-not-increase-validity
#18
Julia M Rohrer, Stefan C Schmukle
Bottom-up models of life satisfaction are based on the assumption that individuals judge the overall quality of their lives by aggregating information across various life domains, such as health, family, and income. This aggregation supposedly involves a weighting procedure because individuals care about different parts of their lives to varying degrees. Thus, composite measures of well-being should be more accurate if domain satisfaction scores are weighted by the importance that respondents assign to the respective domains...
2018: Collabra. Psychology
https://www.readbyqxmd.com/read/29651314/health-behavior-and-health-related-quality-of-life-in-patients-with-a-high-risk-of-cardiovascular-disease
#19
Davorina Petek, Marija Petek-Ster, Ksenija Tusek-Bunc
Background: Health-related quality of life (HRQoL) is measuring a patient's experience of his health status and represents an outcome of medical interventions. Existing data proves that a healthy lifestyle is positively associated with HRQoL in all age groups. Patients with a high risk for cardiovascular disease typically led an unhealthy lifestyle combined with risk diseases. We aimed to analyse these characteristics and their reflection in HRQoL. Methods: A cross-sectional study in 36 family practices, stratified by location and size...
March 2018: Zdravstveno Varstvo
https://www.readbyqxmd.com/read/29651262/the-impact-of-the-parental-support-on-risk-factors-in-the-process-of-gender-affirmation-of-transgender-and-gender-diverse-people
#20
Bruna L Seibel, Bruno de Brito Silva, Anna M V Fontanari, Ramiro F Catelan, Ana M Bercht, Juliana L Stucky, Diogo A DeSousa, Elder Cerqueira-Santos, Henrique C Nardi, Silvia H Koller, Angelo B Costa
Research involving transgender and gender diverse people (TGD) increased in the last years, mostly concerning healthcare associated to this population. Few studies dedicated their analysis to the impact of parental support on transgender people, even though this is an important aspect in creating a safe environment on which these individuals can build their identity. In addition, the link between family support, TGD identity and homelessness is not completely established. Thus, due to the specificities of the family context of TGD individuals, the aim of this study is to investigate the association between family support and TGD in different moments of the process of gender affirmation...
2018: Frontiers in Psychology
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