scholarly journals Neuromyelitis optica spectrum disorder

2019 ◽  
Vol 6 (4) ◽  
pp. e580 ◽  
Author(s):  
Janine Beekman ◽  
Aysha Keisler ◽  
Omar Pedraza ◽  
Masayuki Haramura ◽  
Athos Gianella-Borradori ◽  
...  
Keyword(s):  
Physical Health ◽  
Negative Impact ◽  
Emotional Health ◽  
Short Form ◽  
Financial Burden ◽  
Treatment Options ◽  
Well Being ◽  
Psychological Resilience ◽  
Sf 36 ◽  
Negative Impacts

ObjectiveTo gain insights into NMOSD disease impact, which may negatively affect QoL of patients, their families, and social network.MethodsThe current study used validated instruments to assess physical, emotional, and socioeconomic burden of NMOSD on QoL among 193 patients.ResultsA majority of patients reported an initial diagnosis of a disease other than NMOSD. Overall, two-thirds of patients reported NMOSD as having a strong negative impact on physical health (Short Form-36 [SF-36] score 27.1 ± 39.1), whereas emotional well-being was relatively unimpaired on average (SF-36 score 54.0 ± 44.9). A subset of patients reported having the highest category of emotional health despite worse physical health or financial burden, suggesting psychological resilience. Pain (r = 0.61) and bowel/bladder dysfunction (r = 0.41) imposed the greatest negative physical impact on overall QoL. In turn, ability to work correlated inversely with worsened health (r = −0.68). Increased pain, reduced sexual function, inability to work, and reduced QoL had greatest negative impacts on emotional well-being. Dissatisfaction with treatment options and economic burden correlated inversely with QoL.ConclusionsCollectively, the current findings advance the understanding of physical, emotional, social, and financial tolls imposed by NMOSD. These insights offer potential ways to enhance QoL by managing pain, enhancing family and social networks, and facilitating active employment.

scholarly journals Development and validation of the disease-specific QOL-CD quality of life questionnaire for patients with Cushing’s disease

2020 ◽  
Vol 48 (6) ◽  
pp. E4
Author(s):  
Michael D. Cusimano ◽  
Tony Q. Huang ◽  
Anthony Marchie ◽  
Harley S. Smyth ◽  
Kalman Kovacs
Keyword(s):  
Quality Of Life ◽  
Physical Health ◽  
General Health ◽  
Emotional Health ◽  
Well Being ◽  
Cushing's Disease ◽  
Sf 36 ◽  
Generic Measures ◽  
Disease Specific

OBJECTIVECushing’s disease (CD) patients experience a range of debilitating symptoms that impair quality of life (QOL) as assessed using generic measures. These generic measures are inadequate to capture the disease-specific burden of illness. The development of the CD-specific QOL-CD measure of QOL using items generated by CD patients and healthcare professionals will provide a holistic assessment of patient outcomes and efficacy of novel therapies.METHODSA total of 96 CD patients participated. A list of 177 items (version 1.0) was generated by treated CD patients (n = 9), caregivers (n = 2), healthcare providers (n = 7), and results of a MEDLINE search. Item reduction was performed through content analysis and dual scaling. Patients’ rating of importance was incorporated to reduce to a final version of 56 items (version 3.0). Evidence for test-retest reliability was sought through administering the QOL-CD 1 week apart and Cronbach’s α of each subscale. Construct validity was assessed through extreme group analysis and comparison with the normal Canadian population. Concurrent validity was sought through comparison with the SF-36, Functional Assessment of Cancer Therapy–Brain (FACT-Br), and Karnofsky Performance Status (KPS). Perioperative testing was conducted on CD patients (n = 25) against nonfunctioning pituitary adenoma controls (n = 25) through pre- and postoperative testing.RESULTSA total of 96 CD patients (86 females and 10 males; mean age 45.23 ± 14.16 years) participated. The QOL-CD was feasible (mean completion time 15 minutes, with 70% believing accurate capture of QOL), reliable (CD 1 week apart: r = 0.86; control 1 week apart: r = 0.83; Cronbach’s α: general health = 0.73, emotional health = 0.85, physical health = 0.78, mental status = 0.82, social well-being = 0.63, medical treatment = 0.54), and valid (extreme group testing p < 0.001; SF-36 and QOL-CD general health: r = 0.56, social well-being: r = 0.21, emotional health: r = 0.61, total score: r = 0.58; FACT-Br and QOL-CD physical health: r = 0.47, social well-being: r = 0.21, emotional health: r = 0.34, total score: r = 0.68; KPS and QOL-CD general health: r = 0.32, total score: r = 0.14). Perioperative testing of CD patients (n = 25) demonstrated improvement in all subscales postoperatively, with a significant difference in emotional health (p < 0.001) and physical health (p < 0.001).CONCLUSIONSThe QOL-CD questionnaire has been developed for patients with CD and has demonstrated evidence for validity and reliability.

scholarly journals Quality of Life and Mental Health in Kidney Transplant Recipients During the COVID-19 Pandemic

2021 ◽  
Vol 12 ◽  
Author(s):  
Concetta De Pasquale ◽  
Maria Luisa Pistorio ◽  
Pierfrancesco Veroux ◽  
Rossella Gioco ◽  
Alessia Giaquinta ◽  
...  
Keyword(s):  
Kidney Transplant ◽  
Negative Impact ◽  
Emotional Health ◽  
Well Being ◽  
Transplant Recipients ◽  
Kidney Transplant Recipients ◽  
Phone Calls ◽  
Middlesex Hospital ◽  
Sf 36 ◽  
Psychopathological Disorders

Introduction: The COVID-19 pandemic has led to an increase in mental distress such as phobic anxieties, depressive reactions, hypochondriac concerns, and insomnia. Among the causes are risk of infection and prolonged isolation. This study aimed to analyze psychopathological variables and dysfunctional lifestyles related to adequate therapeutic compliance in kidney transplant recipients.Methods: Eighty-nine kidney transplant recipients were evaluated using an online protocol including a questionnaire concerning habits, lifestyle and psychophysical well-being in the COVID-19 period, the Middlesex Hospital Questionnaire (MHQ) and the SF-36 Health Survey to evaluate the perception of their physical and emotional health.Results: Of these recipients, 28.6% reported changes in their emotional state. Sleep quality deteriorated for 16.1%. Anxiety (M = 5.57, r = 0.33; p &lt; 0.05) and phobia (M = 6.28, r = 0.26; p &lt; 0.05) correlated with concerns related to physical health. There was no negative impact on relational and socialization aspects, which were likely well compensated by the use of remote technologies such as video phone calls, Zoom meetings and use of computers (r = 0.99; r = 0.80; p &lt; 0.05).Conclusions: It would be interesting to maintain this remote visit and interview mode to monitor, on a clinical and psychological level, kidney transplant recipients in subsequent follow-ups (12–18 months), to check for any psychopathological disorders and/or changes in their resilience capacity in the Coronavirus emergency.

Quality of life of patients with Sjogren’s disease with ongoing therapy with diseasemodifying antirheumatic drugs

2020 ◽  
pp. 33-38
Author(s):  
E. Yu. Gan ◽  
L. P. Evstigneeva
Keyword(s):  
Quality Of Life ◽  
Short Form ◽  
Life Quality ◽  
Well Being ◽  
Disease Modifying Antirheumatic Drugs ◽  
Antirheumatic Drugs ◽  
Sf 36 ◽  
Disease Modifying ◽  
Sjögren’S Disease

Purpose of the study. Assessing the association between the life quality of patients with Sjogren’s Disease and ongoing therapy with various disease-modifying antirheumatic drugs.Material and methods. The study was conducted on the basis of the regional rheumatology center of the consultative diagnostic clinic of the Sverdlovsk Regional Clinical Hospital No. 1. This work is based on the results of a simultaneous study of 74 patients with primary Sjogren’s Disease (SD), distributed in three comparison groups receiving various disease-modifying antirheumatic drugs chlorambucil, methotrexate and hydroxychloroquine. The diagnosis of SD was carried out according to European-American criteria AECGC (2002) [18]. In order to analyze the quality of life of patients with SD, the 36-Item Short Form Health Survey (SF‑36) was used. Statistical data processing was carried out using Statistica 7.0 program.Results. Assessment of the quality of life of patients with SD, which is an integrative criterion of human health and well-being, revealed the absence of statistically significant differences (p > 0.05) on eight scales and two health components of the SF‑36 questionnaire in the analyzed groups that differ in the treatment of disease-modifying antirheumatic drugs chlorambucil, methotrexate and hydroxychloroquine.Conclusions. The obtained data indicate an equivalent quality of life in SD patients treated with different disease-modifying antirheumatic drugs methotrexate, chlorambucil and hydroxychloroquine, and therefore hydroxychloroquine can be considered as an alternative basic therapy in patients with SD with certain limitations and contraindications methotrexate and chlorambucil.

scholarly journals Relationships between Physical and Social Behavioural Changes and the Mental Status of Homebound Residents in Hong Kong during the COVID-19 Pandemic

2020 ◽  
Vol 17 (18) ◽  
pp. 6653
Author(s):  
Ben Y. F. Fong ◽  
Martin C. S. Wong ◽  
Vincent T. S. Law ◽  
Man Fung Lo ◽  
Tommy K. C. Ng ◽  
...  
Keyword(s):  
Mental Health ◽  
Hong Kong ◽  
Physical Health ◽  
Negative Impact ◽  
Severe Depression ◽  
Social Contact ◽  
Well Being ◽  
Full Time ◽  
Online Questionnaire ◽  
Physical Strain

In Hong Kong, social distancing has been adopted in order to minimise the spread of COVID-19. This study aims to examine the changes in physical health, mental health, and social well-being experienced by local residents who were homebound during the pandemic. An online questionnaire in both Chinese and English versions was completed by 590 eligible participants from 24 April to 13 May 2020. The questionnaire found that individuals aged 18 to 25 years spent more time resting and relaxing but experienced more physical strain. Working status was associated with social contact, with participants working full-time jobs scoring higher in “maintaining social communication via electronic means” and “avoiding social activities outside the home”. Additionally, approximately one third of the participants (29.7%) had moderate to severe depression, and participants aged 18 to 25 were found to have higher scores in PHQ-9. Changes in physical health and social contact were significantly associated with developing depressive symptoms. From the results, it is clear that the COVID-19 pandemic has the potential to exert a negative impact on the mental health status of individuals.

The increasing toll of racism and discrimination on California agricultural workers and their families under the Trump administration

Ethnicities ◽  
2021 ◽  
pp. 146879682110182
Author(s):  
Alvaro Medel-Herrero ◽  
Monica Torreiro-Casal ◽  
Joseph D Hovey ◽  
Karla Rascon-Garcia ◽  
Suzette Smiley-Jewell ◽  
...  
Keyword(s):  
Immigration Policy ◽  
Emotional Health ◽  
Well Being ◽  
Agricultural Workers ◽  
Public Programs ◽  
Healthcare Facilities ◽  
Community Attitudes ◽  
Potential Impact ◽  
Negative Impacts ◽  
Trump Administration

Over 800,000 Mexican agricultural workers are employed in California each year, of which approximately 400,000 are estimated to be undocumented immigrants. Previous studies have found President Trump to be distinct in his anti-immigrant rhetoric and explicit verbal attacks of immigrants and refugees, which predicts hostile community attitudes towards immigrants and minorities. We convened 19 focus groups (FG) in diverse regions of California to gather information from Latina/o agriculture workers on the potential impact(s) of the Trump administration’s anti-immigrant rhetoric and immigration policy on this population. Widespread racism and discrimination were overwhelmingly noted in all FG sessions. Participants reported being the targets of increasingly hostile behavior, including hate crimes, that they attributed to anti-immigration rhetoric. Therefore, participants also reported an increasing sense of fear and psychological distress that led them to avoid community participation. Perceptions of racist and intentionally harmful policies contributed to reduced interactions with healthcare facilities and prompted both documented and undocumented participants to withdraw themselves and their children from public programs. For FG participants, the Trump administration’s anti-immigrant rhetoric and immigration policy severely impacted their community resulting in profound negative impacts on their economic well-being, education, and physical and emotional health.

scholarly journals Age Variations in Perceived COVID-19 Threats, Negative Impacts, and Associations with Well-Being

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 933-933
Author(s):  
Tara Gruenewald ◽  
Anthony Ong ◽  
Danielle Zahn
Keyword(s):  
Sleep Quality ◽  
Disease Severity ◽  
Negative Impact ◽  
Well Being ◽  
Poor Sleep ◽  
Older Individuals ◽  
Poor Sleep Quality ◽  
Age Variations ◽  
Age Variation ◽  
Negative Impacts

Abstract The COVID-19 pandemic represents an unprecedented threat to individual and public health, psychosocial, and economic well-being, although COVID-19 threats and impacts may vary by age and other demographic characteristics. Although greater age is a risk factor for greater COVID-19 disease severity, we know little about the association between age and perceived and experienced COVID-19 threats and their association to well-being. These associations were examined in an ongoing 3-wave investigation of over 1,700 U.S. adults (age 18-89; 53.1% female). Wave 1 analyses indicate no significant age variation in perceived threat of COVID-19 infection, with older and younger individuals reporting similar levels of COVID-19 infection threat. However, greater age was associated with lower perceived negative impact on financial and needed resources (r=-.10**), lower perceptions of COVID-19 induced harm to mental well-being (r=-.17**), and more favorable well-being profiles. Greater perceived COVID-19 threat and negative impact on resources and well-being were linked to greater feelings of stress (β’s=.45 to .68***), loneliness (β’s=.24 to .49***), social well-being (β’s=-.19 to -.36***), and poor sleep quality (β’s=.34 to .51***). These associations did not vary with age with the exception that older individuals showed stronger links between COVID-19 threat and impacts and poorer sleep quality. Ongoing analyses are examining whether these associations persist over time. Despite older adults’ greater risk of COVID-19 disease severity and mortality, older age did not appear to be linked to greater perceived COVID-19 threat or impacts, nor linkages to ill-being, with the possible exception of potential greater vulnerability to poor sleep quality.

scholarly journals Perceived functioning, well-being and psychiatric symptoms in patients with stable schizophrenia treated with long-acting risperidone for 1 year

2005 ◽  
Vol 187 (2) ◽  
pp. 131-136 ◽  
Author(s):  
W. Wolfgang Fleischhacker ◽  
Jonathan Rabinowitz ◽  
Georg Kemmler ◽  
Mariëlle Eerdekens ◽  
Angelika Mehnert
Keyword(s):  
Mental Component Summary ◽  
Psychiatric Symptoms ◽  
Short Form ◽  
Mental Component Summary Score ◽  
Well Being ◽  
Psychotic Symptoms ◽  
Open Label ◽  
Sf 36 ◽  
Patient Reported ◽  
Long Acting

BackgroundThe extent to which antipsychotics improve patients' well-being is uncertain.AimsTo examine psychopathology and patient-rated functioning and well-being in patients treated with risperidone.MethodIn a 1-year, open-label, international multicentre trial of long-acting risperidone in 615 stable adult patients with schizophrenia, self-rated functioning and well-being were measured every 3 months using the Short Form 36-item questionnaire (SF–36). Psychopathology was quantified using the Positive and Negative Syndrome Scale (PANSS).ResultsSignificant improvements were found on the SF–36 mental component summary score and vitality and social functioning scales. PANSS and mental component summary scores were moderately correlated.ConclusionsPatient-reported functioning and well-being appear to differ from investigator-rated psychotic symptoms. Patient-rated well-being should be assessed with symptoms to help measure treatment outcomes.

Development and Testing of the UK SF-12

1997 ◽  
Vol 2 (1) ◽  
pp. 14-18 ◽  
Author(s):  
Crispin Jenkinson ◽  
Richard Layte
Keyword(s):  
Health Status ◽  
Short Form ◽  
Community Sample ◽  
Mental Component Summary Score ◽  
Well Being ◽  
Summary Score ◽  
Sf 36 ◽  
Patient Groups ◽  
The Uk ◽  
Component Scores

Objectives: The 36 item short form health survey (SF-36) has proved to be of use in a variety of settings where a short generic health measure of patient-assessed outcome is required. This measure can provide an eight dimension profile of health status, and two summary scores assessing physical function and mental well-being. The developers of the SF-36 in America have developed algorithms to yield the two summary component scores in a questionnaire containing only one-third of the original 36 items, the SF-12. This paper documents the construction of the UK SF-12 summary measures from a large-scale dataset from the UK in which the SF-36, together with other questions on health and lifestyles, was sent to randomly selected members of the population. Using these data we attempt here to replicate the findings of the SF-36 developers in the UK setting, and then to assess the use of SF-12 summary scores in a variety of clinical conditions. Methods: Factor analytical methods were used to derive the weights used to construct the physical and mental component scales from the SF-36. Regression methods were used to weight the 12 items recommended by the developers to construct the SF-12 physical and mental component scores. This analysis was undertaken on a large community sample ( n = 9332), and then the results of the SF-36 and SF-12 were compared across diverse patient groups (Parkinson's disease, congestive heart failure, sleep apnoea, benign prostatic hypertrophy). Results: Factor analysis of the SF-36 produced a two factor solution. The factor loadings were used to weight the physical component summary score (PCS-36) and mental component summary score (MCS-36). Results gained from the use of these measures were compared with results gained from the PCS-12 and MCS-12, and were found to be highly correlated (PCS: ρ = 0.94, p < 0.001; MCS: ρ = 0.96, p < 0.001), and produce remarkably similar results, both in the community sample and across a variety of patient groups. Conclusions: The SF-12 is able to produce the two summary scales originally developed from the SF-36 with considerable accuracy and yet with far less respondent burden. Consequently, the SF-12 may be an instrument of choice where a short generic measure providing summary information on physical and mental health status is required. Crispin Jenkinson DPhil, Deputy Director

The glass is not half empty: optimism, pessimism, and health among older adults

2019 ◽  
Vol 32 (1) ◽  
pp. 135-139 ◽  
Author(s):  
Michael D. Barnett ◽  
Ellen A. Anderson
Keyword(s):  
Mental Health ◽  
Older Adults ◽  
Physical Health ◽  
Short Form ◽  
Well Being ◽  
Community Dwelling ◽  
Physical And Mental Health ◽  
Cross Sectional Survey ◽  
Life Orientation Test ◽  
Health And Well Being

ABSTRACTObjectives:Optimism and pessimism are distinct constructs that have demonstrated independent relationships with aspects of health and well-being. The purpose of this study was to investigate whether optimism or pessimism is more closely linked with physical and mental health among older adults.Design:Cross-sectional survey.Participants:Community-dwelling older adults (N = 272) ages 59–95 in the southern United States.Measurements:The Life Orientation Test—Revised and the Short Form 8.Results:At the bivariate level, optimism was associated with higher physical health and mental health, while pessimism was associated with lower physical health and mental health. Multiple-regression analyses as well as comparison of correlation coefficients found that pessimism was more closely associated with physical health and mental health than optimism.Conclusions:These results add to the literature suggesting that, in terms of older adults’ health and well-being, avoiding pessimism may be more important than being optimistic.

scholarly journals Psychosocial factors, disability and quality of life in chronic shoulder pain patients with central sensitization

2020 ◽  
Vol 8 (2) ◽  
Author(s):  
Prachita P. Walankar ◽  
Vrushali P. Panhale ◽  
Manali M. Patil
Keyword(s):  
Quality Of Life ◽  
Shoulder Pain ◽  
Central Sensitization ◽  
Pain Catastrophizing ◽  
Short Form ◽  
Well Being ◽  
Sf 36 ◽  
Pain Patients ◽  
Chronic Shoulder Pain

Chronic shoulder pain is a complex and multidimensional phenomenon with multiple causative factors involved in its perpetuation. Alteration of central nervous system processing along with the central sensitization is a predominant feature in chronic pain. Reduction in physical function has an impact on the psychological well-being of an individual. The aim of the study was to compare pain, kinesiophobia, catastrophizing, disability and quality of life in chronic shoulder pain patients with and without central sensitization. Eighty chronic unilateral shoulder pain patients in the age group of 40 to 60 years were recruited. Of them, 38 were chronic shoulder pain with central sensitization and 42 without central sensitization, classified on the basis of central sensitization inventory. Pain catastrophizing was measured using the pain catastrophizing scale, kinesiophobia using Tampa scale of kinesiophobia, disability using Shoulder pain and disability index and quality of life using 36-Item Short Form Health Survey questionnaire was evaluated in both the groups. Increased pain catastrophizing (p=0.000), kinesiophobia (p=0.000) and disability (p=0.000) was observed in centrally sensitized chronic shoulder pain patients. Also, physical component summary (p=0.000) and mental component summary (p=0.000) of SF-36 quality of life were reduced in chronic shoulder pain with central sensitization as compared to without central sensitization. Hence, these components should be included during assessment which will provide a holistic and multimodal approach towards the understanding, planning and management of chronic shoulder pain patients.

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