Quality Of Life Measurement Tools Research Articles

Palliative care needs of stroke patients at a tertiary care center in South India.

Stroke survivors have palliative care needs in multiple domains, which are overlooked. Accurate estimation of these is pivotal in ensuring proper rehabilitation and planning interventions to improve quality of life (QoL). We aimed to assess the palliative care needs of stroke patients in various domains in a structured manner at the neurology service of a tertiary care center in South India. Seventy-five consecutive stroke patients presenting to the neurology service were recruited over six months with assessment across various domains including symptom burden, physical domain, activities of daily living (ADL), psychiatric/psychological domain, and QoL at baseline and with follow-up at one month and three months. Despite improvement in the conventional stroke impairment measures among stroke survivors, there were significant unmet needs across various domains; 98% were severely or entirely dependent on ADL at three-month follow-up; and pain and insomnia were the most frequent (33% incidence) troubling symptoms encountered. There were substantial mental health related issues. The QoL measurement tools employed were the stroke impact assessment questionnaire (SIAQ), a novel tool and the World Health Organization Quality Of Life Brief Version (WHO-QOL-BREF). SIAQ scores at one month showed that 19 patients (42.22%) had their QoL severely affected, and 36 patients (80%) showed the same trend at the three-month follow-up. WHO-BREF scores showed that 27 (62%) did not report good QoL, and 32 (73%) were found not to be satisfied with their health at a one-month follow-up. There is a significant burden of unmet palliative care needs among stroke survivors in India across various domains.

Comparison of pain intensity measurements among patients with low-back pain

<p>Pain intensity is the most frequently assessed health domain in clinical studies among patients with low-back pain. Visual analogue scale (VAS) and Numeric rating scale (NRS) have been the mostly used measurement tools for pain intensity. We proposed to correlate these instruments to a generic health-related quality of life measurement tool in order to show the scale with superior clinical relevance.</p>. <p>We used cross-sectional, convenience sampling. 120 patients with chronic low-back pain administered the 29-item Patient Reported Outcomes Measurement Information System Profile with NRS included, and the VAS scale in the National Institute of Mental Health, Neurology and Neurosurgery. We determined the correlation between PROMIS domain T-scores and VAS and NRS scores.</p>. <p>We performed Spearman rank correlation test to calculate the correlation coefficient. We found VAS scales measuring pain had weak to moderate correlations with all PROMIS health domains (r = 0.24&ndash;0.55). Therefore, we compared correlation of PROMIS domain scores with PROMIS pain intensity numeric rating scale and VAS scales. PROMIS domains had moderate to strong correlations with pain intensity scale (r = 0.45&ndash;0.71). PROMIS physical function short form [r = &ndash;0.65, 95% CI (&ndash;0.75) &ndash; (&ndash;0.55)] and PROMIS pain interference short form (r = 0.71, 95% CI 0.63 &ndash; 0.79) had the strongest correlation with pain intensity item.</p>. <p>NRS has showed greater correlation with PROMIS domain T-scores than VAS scale. This may prove that NRS has greater connection to another health domains, thus it correlated more to health-related quality of life than visual scale. We recommend NRS to use in further clinical studies conducted among patients with low-back pain.</p>.

Sexual quality of life in patients with pemphigus: A case-control study.

Pemphigus, an autoimmune blistering disease that affects the skin and mucous membranes, significantly impairs the quality of life (QoL) of affected individuals. While there are a variety of QoL measurement tools available for assessing this disease, there is a lack of studies that specifically evaluate the sexual QoL of patients with pemphigus. This case-control study aims to investigate the impact of the disease on sexual activity as well as its overall effect on QoL. Fifty pemphigus patients, who were referred to the Dermatology Department at the University Hospital of Brescia in the period March 2019-September 2021, completed several QoL surveys, including the 36-item Short Form Health survey (SF-36), the 12-Item General Health Questionnaire (GHQ-12), the Autoimmune Bullous Disease Quality of Life (ABQOL) and either the International Index of Erectile Function (IIEF) or the Female Sexual Function Index (FSFI). The severity of the disease was assessed using the Pemphigus Disease Area Index (PDAI). Differences in QoL surveys between the case and control groups were analysed using either the t-test or the Wilcoxon-Mann-Whitney test. The correlation between QoL surveys in pemphigus patients and disease severity were analysed using Spearman's coefficient (r). The results revealed a marked impairment in overall QoL among patients with pemphigus compared to the healthy control subjects. Significant differences were observed in various domains of QoL, including physical health, mental well-being, social functioning and, notably, sexual health. Furthermore, disease severity as evaluated by the PDAI showed correlations with specific aspects of health status, and disease-specific QoL demonstrated associations with nearly all domains of health status. No significant correlations were found between sexual activity, mucosal involvement or steroid therapy and PDAI scores or disease-specific QoL measures. These findings emphasize the significant impact of pemphigus on patients' well-being, with particular attention to the impaired sexual activity.

Global status of research on gastrointestinal cancer patients’ quality of life: A bibliometric and visual analysis from 2003 to 2023

ObjectiveTo analyze the current research status, hotspots, and frontiers in the field of Gastrointestinal (GI) cancer and quality of life (QoL) through the bibliometrics method, and to provide references and guidance for future research. MethodsLiterature related to GI cancer and QoL from April 1, 2003 to March 31, 2023 was retrieved from the Web of Science Core Collection database. CiteSpace 6.2.R1 was performed for collaboration analysis, keyword co-occurrence analysis, and document co-citation analysis. ResultsA total of 1224 publications were included in this study. There has been a significant increase in the number of publications in this field over the past two decades. The United States, the Karolinska Institute and the University of Amsterdam, and Pernilla Lagergren are the most prolific country, institution, and author, respectively. The links between most of the research constituents were relatively thin (centrality <0.1). The keyword analysis indicates that the benefits of physical activity on QoL, the levels of psychological distress and its relationship with QoL, as well as the development and validation of QoL measurement tools have been the research hotspots. Open-label/double-blind trials exploring therapeutic interventions and more targeted new drugs or more effective drug combinations, and longitudinal studies determining the direction of the association between psychological distress and QoL at different time points, may be emerging trends in this field. ConclusionThe cooperation among countries, institutions, and authors in this field should be strengthened. In addition, the health benefits of light physical activity, interventions for QoL, trajectory and direction of the relationship between psychological distress and QoL may be the focus of future research.

Effect of Resistance Exercise with Moderate and Low Intensity on Quality of Life and Mental Health in Maintenance Hemodialysis Patients

It was to explore the effects of resistance exercise with moderate and low intensity on quality of life (QoL) and mental health of patients with maintenance hemodialysis (MHD). From June 2022 to December 2022, 90 patients receiving MHD treatment in Blood Purification Center of XXX Hospital were randomly divided into observation group and controls, with 45 patients in each group. The controls received routine hemodialysis care, and observation group received resistance exercise with moderate and low inte in addition to routine hemodialysis care. QoL measurement tool adopted 36-Item Short Form Health Survey (SF-36), Hamilton Rating Scale for Depression (HAMD), and Hamilton Anxiety Scale (HAMA) to evaluate patients. The physical function was 67.64±25.62 and mental health was 71.68±28.55 in controls, and those was 71.11±25.42 and 73.48±13.59 in observation group; in terms of physical function and mental health in QoL, observation group was obviously higher; and HAMD and HAMA scores in observation group were clearly lower as against controls (P &lt; 0.05). The effect of resistance exercise with moderate and low inte was obvious on the physical function and mental state of QoL in MHD patients, but not obvious on other aspects. Resistance exercise with moderate and low inteis beneficial to improve patients’ mental health.

CLFM-Qol: a specific quality of life measurement tool for children from 11 to 15 years with low-flow malformations.

Low-flow malformations (LFMs) are rare diseases with a significant impact on health-related quality of life (HRQoL), especially in children. No disease-specific questionnaire is available for children with LFMs. To develop and validate a specific HRQoL questionnaire for children from 11 to 15 years old suffering from LFMs. A preliminary questionnaire based on a verbatim from focus groups was created and sent to children from 11 to 15 years old suffering from LFMs, together with a dermatology specific and a generic HRQoL questionnaire (cDLQI and EQ-5D-Y). A total of 75 from 201 included children responded to the questionnaires. The final version of the questionnaire (cLFM-QoL) included 15 questions and was not divisible into subscales. It demonstrated excellent internal consistency (cronbach 0.89), convergent validity and readability (SMOG 6.04). cLFM-QoL mean score (+ SD) was 12.9/45 (8.03) for all grades of severity, for mild 8.22/45 (7.5), moderate 14.03/45 (8.35), severe 12.35/45 (6.59) or very severe patients 20.7/45 (3.39) (p 0.006). cLFM-QoL is a validated short and easy to use specific questionnaire with excellent psychometric capacities. It will be suitable for any children 11 to 15 with LFMs, in daily practice or clinical trials.

Predictors of self-reported general health status in people experiencing homelessness with serious mental illness.

The growing homeless population in the U.S.A. is disproportionately impacted by poor mental and physical health status, including a higher incidence of acute and chronic health problems, increased hospitalizations, and premature mortality compared to the general population. This study examined the association between demographic, social, and clinical factors and perceptions of general health status among the homeless population during admission to an integrated behavioral health treatment program. The study sample included 331 adults experiencing homelessness with a serious mental illness or co-occurring disorder. Participants were enrolled in services at a day program for unsheltered homeless adults, a residential substance use treatment program for males experiencing homelessness, a psychiatric step-down respite program for those experiencing homelessness following psychiatric hospitalization, permanent supportive housing for formerly chronically homeless adults, a faith-based food distribution program, and homeless encampment sites in a large urban area. Participants were interviewed using The Substance Abuse and Mental Health Services Administration's National Outcome Measures tool and a validated health-related quality of life measurement tool, SF-36. Data were examined using in elastic net regression. The study found seven factors to be particularly strong predictors of SF-36 general health scores.Male gender, "other" sexual identity, stimulant use, and Asian race were all associated with better perceptions of health status, while transgender status, inhalant use, and number of times arrested were associated with poorer perceptions. This study suggests targeted areas for health screening within the homeless population; however, more studies are necessary to demonstrate generalizability of the results.

PDQ-8: A Simplified and Effective Tool Measuring Life Quality in Progressive Supranuclear Palsy.

The self-reported quality of life (QoL) should be carefully listened to in progressive supranuclear palsy (PSP) from the patient-centered perspective. However, there was still a lack of short QoL measurement tool in atypical parkinsonism. We aimed to test whether the short Parkinson's Disease Questionnaire-8 (PDQ-8) was effective in assessing QoL in PSP, comparing with Progressive Supranuclear Palsy Quality of Life Scale (PSP-QoL) and Parkinson's Disease Questionnaire-39 (PDQ-39). 132 patients with clinical diagnosed PSP, including PSP-Richardson syndrome (RS) subtype (n = 71) and PSP-non-RS subtype (n = 61) were recruited for clinical evaluation including QoL assessment. The detailed QoL profiles and possibility of using PDQ-8 were systemically analyzed. The determinants to the QoL were then calculated by multivariate linear regression analysis. The PSP-QoL total score summary index (SI) was 22.8 (10.1, 41.1), while the PDQ-8 and PDQ-39 total SI score were 28.1 (12.5, 46.9) and 29.5 (15.4, 49.4). Mobility, activities of daily life, cognition and communication were the main affected QoL subdomains (median SI: 40.0, 31.3, 25.0 and 25.0 respectively). PSP-RS subtype showed more severe damage physically (p<0.001) and mentally (p = 0.002) compared to other subtypes. More importantly, the strong relevance of PDQ-8 and recommended PSP QoL tools were confirmed (p<0.001). In addition, disease severity, depression and daytime sleepiness were proved to be critical determinants for QoL in PSP. PDQ-8 could be an easy, reliable, and valid tool to evaluate QoL in patients with PSP. Besides motor symptoms, more attention should be paid to non-motor impairment such as depression in PSP.

Reliability and Validity of Korean Version of Crohn's and Ulcerative Colitis Questionnaire-8.

Background Patients with inflammatory bowel disease (IBD) have a decreased quality of life (QoL), the improvement of which is a treatment goal. The CUCQ-8 is a verified simple and effective QoL measurement tool. We validated the Korean version of CUCQ-8 with the approval of its developer. Methods We investigated the correlation between the Korean version of CUCQ-8 and the IBDQ-32 in patients with IBD. Results In all, 147 subjects (male, 97 (66.0%); female, 50 (34.0%); mean age 36.2 ± 13.5 years) were analyzed. Cronbach's alpha coefficient of the CUCQ-8 was 0.833, indicating very high internal consistency. The Korean version of the CUCQ-8 showed a significant correlation with the IBDQ-32 and its subscales (correlation coefficient, >0.75). Conclusions The Korean version of the CUCQ-8 has high reliability and construct validity and can be used to evaluate the QoL of patients with IBD.

Development and validation of a quality of life measurement scale specific to hereditary hemorrhagic telangiectasia: the QoL-HHT

BackgroundHereditary hemorrhagic telangiectasia (HHT) disease is a rare genetic disorder with symptoms and complications that can significantly affect patients’ daily lives. To date, no scale has been validated to assess the specific symptoms of this disease on the quality of life (QOL) of HHT patients. This makes it difficult for clinicians to accurately measure the quality of life of patients with HHT. The present study aims to develop and validate a QOL measurement tool specific to HHT disease: the QOL questionnaire in HHT (QoL-HHT).MethodsA quantitative, non-interventional, multi-center study involving HHT patients in twenty French HHT expert centers was conducted. A calibration sample of 415 HHT patients and a validation sample of 228 HHT patients voluntarily participated in the study. Data were analyzed using exploratory factor analysis (EFA), confirmatory factor analysis (CFA), Exploratory Structural Equation Modeling (ESEM) analyses, reliability analyses, and correlational analyses.ResultsThe EFA, CFA and ESEM results allowed us to provide evidence of the factorial structure of a questionnaire composed of 24 items measuring 6 domains of QOL: Physical limitations, social relationships, concern about bleeding, relationship with the medical profession, experience of symptoms, and concern about the evolution of the disease. Cronbach’s alpha coefficients (> 0.70) demonstrated reliable internal consistency of all the QoL-HHT scores (dimensions). The results of the test–retest provided further evidence of the reliability of the QOL-HHT scores over time. Correlational analyses provided evidence for the convergent validity of the QoL-HHT scores.ConclusionsWe developed a simple and quick self-assessment tool to measure quality of life specific to HHT disease. This study demonstrated reliability and validity of our QoL-HHT scores. It is a very promising tool to evaluate the impact of HHT disease on all aspects of the quality of life of HHT patients in order to offer them individualized medico-psycho-social support.Trial registration: ClinicalTrials, NCT03695874. Registered 04 October 2018, https://www.clinicaltrials.gov/ct2/show/NCT03695874

Health-related Quality of Life Measurement Tools for Lymphedema: A Review of the Literature.

A systematic literature review search was conducted for clinical lymphedema studies published between January 1, 1984, and February 1, 2020, using Pubmed database. All clinical lymphedema studies which used HRQoL instruments as outcome measures were identified. One thousand seventy-six studies were screened-of which, 288 studies were individually assessed. Thirty-nine HRQoL instruments were identified in these clinical lymphedema studies. Of these, there are eight lymphedema-specific questionnaires that cover all HRQoL domains, all of which have been validated for use in lymphedema. We contrasted the two most popular questionnaires [LYMQOL and Upper Limb Lymphedema (ULL)-27] and compared their features. There is currently no ideal lymphedema HRQoL measurement tool available based on the COSMIN criteria. However, our review suggested that LYMQOL and ULL-27 are the most used and most validated instruments at present, but each has their own limitations. We recommend the use of LYMQOL and ULL-27 for future studies to allow direct HRQoL comparison to current literature. Further research is required to develop an optimal HRQoL questionnaire that can ultimately become the gold standard HRQoL instrument for lymphedema.

Quality of life and its demographic predictors among workers at a plastic factory in Malaysia: a cross-sectional study

Quality of life (QOL) is an individualized measure that reflects a person’s subjective feelings towards the different aspects of his or her life and incorporates them into his overall health evaluation. The WHOQOL-BREF is a QOL measurement tool that has been validated in worldwide and local studies, with good reliability and sensitivity. WHOQOL-BREF questionnaire was used to evaluate the QOL of 89 workers at a plastic factory in Selangor, Malaysia. These were compared using t-test and Spearman’s bivariate correlation test to assess for significant correlations and predictors of performance in the different domains. The performance of the sample, both overall and for individual domains, was significantly lower than reported in previous studies. Local workers, highly educated workers, workers with shorter employment, and workers who did not take overtime performed significantly better than their respective counterparts. Also, lower education, foreign nationality, longer employment at the factory, overtime, and crushing jobs were associated with lower QOL scores. Studies evaluating QOL in industrial workers in Malaysia are scarce. Our sample is more diverse than the previous similar studies from Malaysia, and hence it offers new insights into the QOL of plastic industrial workers in the country.

Quality of life in neuropathic pain: a literature review

Introduction: Neuropathic pain may develop after injury to the central nervous system, peripheral or both, when deleterious changes occur along the nociceptive modulatory pathways of the central nervous system. Proper management requires an interdisciplinary approach, as it can impact quality of life. Objectives: This review of the literature aims to assess the impact of pharmacological and non-pharmacological factors in the quality of life of patients with chronic neuropathic pain. Methodology: A systematized virtual search was carried out in PubMed®, collected articles between January 2010 and May 2020 using the terms “neuropathic pain”, “treatment”, “human” and “systematic review” using the filters of “systematic reviews ”E“ published in the last 10 years ”. All articles were formed by two independent reviewers and tabulated in a spreadsheet using Microsoft Excel® software. Results: Non-pharmacological interventions were addressed by most articles. Some articles addressed pharmacological interventions, with painful diabetic peripheral neuropathy being the main etiology. The most used quality of life measurement tools were: Medical Outcomes Study 36 (SF-36); EuroQol-5 Dimension (EQ-5D) and Beck Depression Inventory Score (BDI). Conclusion: The scarcity of high-quality studies that measure quality of life through validated tools is an obstacle to credible analysis of the impact of interventions on the life of chronic pain patients, however, in a preliminary way, cognitive behavioral therapy and the use of Spray THC/CBD oromucous has the potential to have a beneficial impact on quality of life.

1556 Does Surgical Intervention Improve Quality of Life for Patients with Chronic Ear Disease in Nepal?

Abstract Aim To assess change in quality of life (QoL) pre- and post-surgery for patients with chronic ear disease (CED) in Nepal. Hearing loss is the fourth leading cause of disability world-wide with 90% of those affected living in low and middle-income countries. A huge yet treatable contributor to this is chronic suppurative otitis media (CSOM). The Chronic Ear Survey is a sensitive and disease specific QoL measurement tool in patients with CSOM exploring activity restriction, symptoms and utilisation of medical services. Method This study was conducted at the Brinos Ear Care Centre in Nepalgunj, Nepal. A modified Chronic Ear Survey (mCES) was translated into Nepali and administered to patients before surgery and at post-operative follow up by community ear care assistants. The Mann-Whitney U test was used for statistical analysis. Results The mCES was administered to 64 patients pre-operatively and 28 patients post-operatively. Disease specific QOL in patients with CSOM was demonstrated to be better overall in patients post-surgery and specifically in the domains of activity limitation and symptoms. No significant change was demonstrated in utilisation of medical services (p &amp;lt; 0.1) Conclusions Surgical intervention for patients with CSOM in Nepal improves ear specific QOL. This manifests specifically in a reduction in severity of symptoms and fewer restrictions on activity. Surgery in this population does not significantly change healthcare seeking behaviour and this must be explored further in the context of access to surgery and attitudes towards healthcare in this population.

POS-604 MIDDLE MOLECULE CLEARANCE & EXPANDED DIALYSIS: WHAT IS THE IMPACT ON PATIENT-REPORTED SYMPTOM BURDE, THROUGH THE LENS OF THE LONDON EVALUATION OF ILLNESS (LEVIL)

Traditionally used high flux (HF) dialyzers are incapable of clearing toxins of larger middle molecular weight, which are mainly responsible for chronic systemic inflammation, cardiovascular adversity, and poor clinical outcomes in the hemodialysis (HD) population. The recent advent of medium cut-off dialyzers (MCO)–termed expanded dialysis (HDx), have been proven to clear these hard-to-reach toxins while selectively retaining valuable proteins–a step in the right direction as we strive to improve patient care. However, there is no literature focusing on the direct impact of HDx on patient-reported symptoms and quality of life (QoL); a mortality risk in itself. Historically used cross-sectional QoL and symptom measurement tools are unable to properly assess and track the variabilities of symptom burden and are not responsive to short-term changes. The London Evaluation of Illness (LEVIL) is a patient-reported symptoms measurement tool meant for iterative use, and captures fluctuations in real-time. Symptom domains measured by LEVIL include general well-being, energy, sleep quality, bodily pain, appetite, and breathing; domains relevant to the chronic kidney disease population. We report on the impact of 12 weeks of HDx therapy on symptom burden and QoL in patients undergoing conventional HD, measured by LEVIL. A single-centred interventional pilot study in the prevalent chronic HD population-London Health Sciences Centre where 22 participants completed the study. The study was 14 weeks in length; the first 2 weeks patients completed the LEVIL questionnaire with each dialysis session using their HF dialyzer to establish baseline symptom scores. Patients were then changed to Theranova (Baxter–MCO dialyzer) for 12-weeks, continuing the complete LEVIL with each HD session. Bloodwork for CBC, lytes, urea, Cr, Ca, Phos, Alb, CRP, B2M, Free-Light-Chains (FLC) were drawn at the beginning and end of the study. Baseline results were stratified into two groups. Those with an average baseline LEVIL score (scale of 0=poor, 100=excellent) of 70 or above were grouped as “HIGH baseline,” while those with a LEVIL score of <70 were labeled “LOW baseline.” When all six symptom domains were combined, resulting in an “overall” QoL score, 73% of patients had a LOW baseline score (mean 51.5±10.2). There was a significant improvement in overall QoL in this group after 8 (mean 64.6±16.2, p=0.0013) and 12 weeks of HDx therapy (mean 67.2±16.6, p=0.0001). There was no impact on overall QoL in those with a HIGH baseline score. There were no significant differences in lab values other than a reduction of FLC in both groups, most significantly in Kappa-FLC in those with LOW baseline scores (p=0.0182). Domain-specific results also showed that patients with LOW baseline scores benefited after 8 weeks of therapy in the domains of general well-being (p=0.0008) and energy (p=0.0011). Sleep quality improved after just 4 weeks of therapy (p=0.0098). HDx improves QoL and symptom burden in those with LOW baseline LEVIL scores, significantly impacting general well-being, energy, and sleep quality. LEVIL can identify patients who may benefit from HDx and proves to capture the response to treatment after 8 weeks in the domains that most significantly impact HD patients’ QoL. Could this be the ‘magic wand’ to improve patient care?

How Do you Focus on Quality of Life When Kids Cannot Go to School or Outside?

Purpose of ReviewThis paper seeks to explore the definitions of quality of life and its application to pediatric research and clinical practice. This paper also highlights some of the imperfections in evaluating patient-reported outcomes designed to measure quality of life in pediatrics. Additionally, this paper explores some of the unique challenges in promoting quality of life during the COVID-19 pandemic.Recent FindingsThere are numerous different measurement scales to examine quality of life in children of different ages, and with a variety of disease states.SummaryDespite the number of quality of life measurement tools, not every patient population has a validated measure, including patients with palliative care needs. There is no consensus on how to incorporate findings from patient-reported outcomes into clinical practice recommendations. Professional organizations offer guidance and resources for families to encourage focus on quality of life during the COVID-19 pandemic.

Psychometric Properties of the ICECAP-O Quality of Life Measurement Tool When Self-reported by Community-dwelling Older People With Mild and Moderate Dementia.

To evaluate interventions designed to improve the quality of life of people with dementia (PWD), there is a need for psychometrically validated instruments. We tested the psychometric properties of the ICEpop CAPability measure for Older people (ICECAP-O) as a self-report measure of quality of life with PWD. We used data from a randomized controlled trial of Tai Chi with 83 community-dwelling older people with mild and moderate dementia. The ICECAP-O was found to be valid with correlations in the expected directions for fear of falls (r=-0.36, P=0.001) and age (r=0.12, P=0.29), sensitive to change (mean difference=0.051, P=0.04, d=0.51), and have an adequate factorial structure. The ICECAP-O is a valid, generic measure of quality of life for use with PWD without a proxy.

Meaning and Status of Health-related Quality of Life Recognized by Medical Professionals: a Qualitative Study.

BackgroundMedical professionals must maintain their health to provide quality medical care to patients safely. However, the health-related quality of life of medical professionals is a complex issue that currently lacks a standardized evaluation approach. Therefore, the purpose of this study was to identify their perceptions of the health-related quality of life of medical professionals and explore ways to measure their quality of life as accurately.MethodsThis study explored the subjective health status and well-being of Korean medical professionals by conducting three focus group discussions (FGDs) with 12 physicians and 6 nurses (November to December 2019). In the FGD, we elicited participants' opinions on existing health-related quality of life measurement tools. Also, we analyzed transcribed data through content analysis.ResultsParticipants in this study noted the ambiguity in the current definitions of health provided by the World Health Organization. They shared various problems of their health, mainly concerning fatigue and sleep disorders due to their work pattern. Also, participants shared anxiety, burden, and fear of negative consequences due to the complexity of their work. Participants voiced the necessity of a questionnaire on health-related quality of life that reflects the working lives of medical professionals.ConclusionMedical professionals in Korea were mainly criticizing about health-related quality of life problems caused by their work characteristics. The results of this study will provide valuable information for future health-related quality of life surveys targeting medical professionals in Korea, and also help to determine the method for monitoring the health-related quality of life for health professionals. In addition, the aspects and items identified by medical professionals as important for their health-related quality of life may be used as a basis for developing a new health-related quality of life measurement tools for medical professionals.

Cognitive profile of patients with facioscapulohumeral muscular dystrophy.

ABSTRACTAlthough it is predominantly a muscular disease, impairments in the central nervous system in patients with facioscapulohumeral muscular dystrophy (FSHD) have been described in the literature.Objective:To describe the cognitive profile of patients with FSHD and to correlate the impairments found with clinical variables and quality of life.Methods:Cross-sectional and case–control study that evaluated FSHD patients using a series of cognitive assessments (Mini-Mental State Examination — MMSE, Montreal Cognitive Assessment — MoCA, verbal fluency with phonological restriction — FAS, categorical verbal fluency — FAS-cat, trail-making test — TMT, and Rey’s Verbal Auditory Learning Test); a neurological severity scale (Gardner–Medwin–Walton — GMWS); and a quality of life measurement tool (Medical Outcomes Study 36-Item Short-Form Health Survey).Results:Individuals with FSHD (13) and healthy controls (26) were paired by gender and age. Significant differences between case and control groups were found in MMSE, TMT A, and A7 (p≤0.05) and MOCA (p≤0.001) performances. A positive correlation was verified in long-term memory impairments and the age in which symptoms appear (r=-0.593, p=0.033). Regarding quality of life assessment, the emotional domain correlated to MEEM (r=0.657, p=0.015), TMT A (r=-0.601, p=0.030), and A7 (r=0.617, p=0.025) performances.Conclusions:Individuals with FSHD presented mild impairments in the performance of tasks that involve attention, planning, and long-term memory functions. Those impairments were associated neither with the disease duration nor with its neurological severity.

Perceived Physical and Psychological Health in Middle Adulthood : Links to Marital Satisfaction, Age of Marriage, and SES

Background: The life course health development approach, as a new theoretical model relating to health, dwells on psychosocial factors as well as biological factors, and it proposes that the effects of developmental timing unfolding over one’s lifespan should be considered. Based on this theoretical model, as well as empirical studies relating to marriage and health, one of the psychosocial factors that may contribute to the health of middle-aged individuals is the marital relationship. Aims: The aim of this study – conducted with individuals in middle adulthood – is to investigate the relationships between marital satisfaction, age at the time of marriage, SES (socioeconomic status) and psychological and physical health. Method: Data was collected from middle-aged individuals between 40–69 years in Turkey (160 women and 142 men). The World Health Organization Quality of Life Measurement Tool, Brief Symptom Inventory, Marriage Life Scale, and a Demographic Information Form were used to assess the participants’ perceived physical and psychological health, their marital satisfaction, their age of marriage, and SES. Results: A path analysis indicated that the age of marriage was positively related, and perceived psychological health problems were negatively related to perceived physical health. Both marital satisfaction and SES were negatively related to perceived psychological health problems. Upon examination of the mediator role of psychological health problems and SES, it was observed that both marital satisfaction and SES were related to perceived physical health through perceived psychological health problems. Also, the age of marriage was related to perceived psychological health problems via SES. Conclusion: The findings showed that marriage is an important component in the evaluation of perceived health in middle age; individuals are healthier when they get married at a more mature age and have a positive marital relationship.