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OBJECTIVE: To assess the impact of treatment with orthodontic aligners (OA) on oral health-related quality of life (OHRQoL) in patients with trisomy 21 (T21) compared to non-syndromic patients. MATERIALS AND METHODS: The sample consisted of 30 patients, both sexes, aged between 11 and 35 years, divided into two groups: T21 (n = 10, patients with T21, treated prospectively) and CONTROL (n = 20, control group, non-syndromic patients, from the Orthodontic Laboratory of UNOPAR). In both groups, patients were treated with Invisalign orthodontic aligners (Align Technology), following the same treatment parameters. Participants, assisted by their caregivers, when necessary, answered Oral Health Impact Profile (OHIP-14) instrument and the patient's guardians answered the Oral Health Scale for People with Down's syndrome (OHDS) instrument, before (T0) and after 30 (T1), 180 (T2), and 365 (T3) days from the start of treatment. Friedman tests with Bonferroni correction and Mann-Whitney tests were used (p < .05). RESULTS: For the OHDS instrument, it was observed that for the eating and communication domains and an overall score, the treatment with OA positively impacted the lives of T21 patients (p < .05). Regarding the OHIP-14 instrument, the intragroup evaluation showed that in the CONTROL group, there was no significant difference between the evaluated times; while for the T21 group, there was a significant positive impact (p < .05). CONCLUSION: The results showed that the treatment with aligners positively impacted the OHRQoL of T21 patients, and these results were perceived by caregivers, mainly in relation to issues related to eating and communication.
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BACKGROUND AND AIMS: Arginase 1 deficiency (ARG1-D) is a ultrarare disease with manifestations that cause mobility and cognitive impairment that progress over time and may lead to early mortality. Diseases such as ARG1-D have a major impact also outside of the health care sector and the aim of this study was to estimate the current burden of disease associated with ARG1-D from a societal perspective. METHODS: The study was performed as a web-based survey of patients with ARG1-D and their caregivers in four European countries (France, Portugal, Spain, United Kingdom). The survey was distributed at participating clinics and included questions on e.g. symptoms (including the Gross Motor Function Classification System, GMFCS, and cognitive impairment), health care use, medication, ability to work, caregiving, and impact on health-related quality-of-life (HRQoL) using the EQ-5D-5L. RESULTS: The estimated total mean societal cost per patient and year was £63,775 (SD: £49,944). The cost varied significantly with both mobility impairment (from £49,809 for GMFCS level 1 to £103,639 for GMFCS levels 3-5) and cognitive impairment (from £43,860 for mild level to £99,162 for severe level). The mean utility score on the EQ-5D-5L for patients was 0.498 (SD: 0.352). The utility score also varied significantly with both mobility impairment (from 0.783 for GMFCS level 1 to 0.153 for GMFCS level 3-5) and cognitive impairment (from 0.738 for mild level to 0.364 for severe level). CONCLUSIONS: Similar to other studies of rare diseases, the study is based on a limited number of observations. However, the sample appear to be reasonably representative when comparing to previous studies of ARG1-D. This study shows that ARG1-D is associated with a high societal cost and significant impact on HRQoL. Earlier diagnosis and better treatment options that can postpone or withhold progression may therefore have a potential for improved HRQoL and savings for the patient, caregiver, and society.
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Costo de Enfermedad , Calidad de Vida , Humanos , Estudios Transversales , Masculino , Femenino , Persona de Mediana Edad , Adulto , Europa (Continente) , Arginasa , Cuidadores/psicología , Cuidadores/economía , Limitación de la Movilidad , Anciano , Disfunción Cognitiva , Índice de Severidad de la Enfermedad , Adulto JovenRESUMEN
CONTEXT: Understanding former professional football players engagement with health promoting behaviors (physical exercise, high quality diet, and good sleep hygiene) will be helpful for developing lifestyle interventions to improve their feelings of well-being, a relatively understudied facet of health among this population. OBJECTIVE: Examine associations among health-promoting behaviors and subjective outcomes related to well-being among former National Football League (NFL) players. DESIGN: Cross-sectional. SETTING: Online or hard-copy survey. PATIENTS OR OTHER PARTICIPANTS: Former NFL players. MAIN OUTCOME MEASURES: Self-reported health-promoting behaviors (exercise frequency, diet quality, sleep duration and disturbance) and factors related to well-being (PROMIS ® Meaning and Purpose [MP], Self-Efficacy [SE], Ability to Participate in Social Roles and Activities [SRA]). Multivariable linear regression models were fit for each well-being-related factor with health-promoting behaviors as explanatory variables alongside select demographic, behavioral, and functional covariates. Models were fit for the full sample and separately for individual age groups: <30 years; 30-39 years; 40-49 years; 50-59 years; 60-69 years; and 70+ years. RESULTS: A total of 1,784 former NFL players (aged 52.3±16.3 years) completed the survey. Lower sleep disturbance was associated with better MP (ß[standard error]=-0.196[0.024]), SE (ß[standard error]=-0.185[0.024]), and SRA (ß[standard error]=-0.137[0.017]) in the full sample and almost all the individual age groups. More frequent moderate-to-vigorous exercise was associated with higher MP (ß[standard error]=0.068[0.025]) and SRA (ß[standard error]=0.151[0.065]) in the full sample, and with better MP, SE, and SRA among select middle-aged groups (between 40-69 years old). Diet quality, resistance training exercise frequency, other wellness activity frequency, and sleep duration were not associated with well-being-related factors in the full-group and sparse significant associations were observed in individual age group models. CONCLUSIONS: Lower sleep disturbance and more frequent moderate-to-vigorous exercise frequency may be important targets for improving overall health and well-being among former NFL players.
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PURPOSE: Both metabolic syndrome (MetS) and cognitive dysfunction impair health-related quality of life (HRQOL). This study aims to determine whether individuals experiencing both MetS and cognitive dysfunction have lower HRQOL. METHODS: This cross-sectional study enrolled 567 participants who attended outpatient clinics at a medical center in northern Taiwan. MetS was diagnosed according to the modified criteria for the Asian population. Cognitive function was categorized as normal, mild cognitive dysfunction, and advanced cognitive dysfunction according to the score of the Montreal Cognitive Assessment, Taiwanese version. HRQOL was assessed using the SF-36v2® Health Survey (SF-36v2). The associations of the comorbidity status of MetS and cognitive dysfunction with HRQOL were analyzed using linear regression models, adjusting for age, sex, marital status, education level, income groups, and activities of daily living. RESULTS: Out of 567 participants, 33 (5.8%) had MetS with mild cognitive dysfunction, and 34 (6.0%) had MetS with advanced cognitive dysfunction. Participants with both MetS and advanced cognitive dysfunction exhibited the lowest scores in the physical component summary and almost all scales of HRQOL. MetS exacerbated the inverse association between mild cognitive dysfunction and the mental component summary. For those with MetS, the scores on scales of role physical, bodily pain, vitality, and social functioning worsened as cognitive function deteriorated (all Ptrend<0.05). CONCLUSION: As the severity of comorbidity between MetS and cognitive dysfunction varies, patients exhibited poorer performance in different aspects of HRQOL. Future research is needed to find solutions to improve HRQOL for patients with both MetS and cognitive dysfunction.
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Background: Personality has an impact on the health-related quality of life (HRQoL) of older adults. However, the relationship and mechanisms of the 2 variables are controversial, and few studies have been conducted on older adults. Objective: The aim of this study was to explore the relationship between personality and HRQoL and the mediating and moderating roles of sleep quality and place of residence in this relationship. Methods: A total of 4123 adults 60 years and older were from the Psychology and Behavior Investigation of Chinese Residents survey. Participants were asked to complete the Big Five Inventory, the Brief version of the Pittsburgh Sleep Quality Index, and EQ-5D-5L. A backpropagation neural network was used to explore the order of factors contributing to HRQoL. Path analysis was performed to evaluate the mediation hypothesis. Results: As of August 31, 2022, we enrolled 4123 older adults 60 years and older. Neuroticism and extraversion were strong influencing factors of HRQoL (normalized importance >50%). The results of the mediation analysis suggested that neuroticism and extraversion may enhance and diminish, respectively, HRQoL (index: ß=-.262, P<.001; visual analog scale: ß=-.193, P<.001) by increasing and decreasing brief version of the Pittsburgh Sleep Quality Index scores (neuroticism: ß=.17, P<.001; extraversion: ß=-.069, P<.001). The multigroup analysis suggested a significant moderating effect of the place of residence (EQ-5D-5L index: P<.001; EQ-5D-5L visual analog scale: P<.001). No significant direct effect was observed between extraversion and EQ-5D-5L index in urban older residents (ß=.037, P=.73). Conclusions: This study sheds light on the potential mechanisms of personality and HRQoL among older Chinese adults and can help health care providers and relevant departments take reasonable measures to promote healthy aging.
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Personalidad , Calidad de Vida , Humanos , Masculino , Estudios Transversales , Calidad de Vida/psicología , Femenino , Anciano , China/epidemiología , Persona de Mediana Edad , Análisis de Mediación , Anciano de 80 o más Años , Encuestas y Cuestionarios , Calidad del Sueño , Pueblos del Este de AsiaRESUMEN
BACKGROUND: Cancer therapies predispose survivors to a high symptom burden. This study utilized mobile health (mHealth) technology to assess the feasibility of collecting daily symptoms from adult survivors of childhood cancer to evaluate symptom fluctuation and associations with future health-related quality-of-life (HRQOL). METHODS: This prospective study used an mHealth platform to distribute a 20-item cancer-related symptom survey (5 consecutive days each month) and an HRQOL survey (the day after the symptom survey) over 3 consecutive months to participants from the Childhood Cancer Survivor Study. These surveys comprised a PROMIS-29 Profile and Neuro-QOL assessed HRQOL. Daily symptom burden was calculated by summing the severity (mild, moderate, or severe) of 20 symptoms. Univariate linear mixed-effects models were used to analyze total, person-to-person, day-to-day, and month-to-month variability for the burden of 20 individual symptoms. Multivariable linear regression was used to analyze the association between daily symptom burden in the first month and HRQOL in the third month, adjusted for covariates. RESULTS: Out of the 60 survivors invited, 41 participated in this study (68% enrollment rate); 83% reported their symptoms ≥3 times and 95% reported HRQOL in each study week across 3 months. Variability of daily symptom burden differed from person-to-person (74%), day-to-day (18%), and month-to-month (8%). Higher first-month symptom burden was associated with poorer HRQOL related to anxiety (regression coefficient: 6.56; 95% CI: 4.10-9.02), depression (6.32; 95% CI: 3.18-9.47), fatigue (7.93; 95% CI: 5.11-10.80), sleep (6.07; 95% CI: 3.43-8.70), pain (5.16; 95% CI: 2.11-8.22), and cognitive function (-6.89; 95% CI: -10.00 to -3.79) in the third month. CONCLUSIONS: Daily assessment revealed fluctuations in symptomology, and higher symptom burden was associated with poorer HRQOL in the future. Utilizing mHealth technology for daily symptom assessment improves our understanding of symptom dynamics and sources of variability.
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INTRODUCTION: In December 2019, COVID-19 emerged in Wuhan, Hubei Province, China, and rapidly spread worldwide. On December 2022, the Chinese government ended the zero-COVID policy, leading to a surge in cases and significantly impacting daily life. IBD patients face heightened infection risks and substantial effects on their quality of life during the pandemic. METHODS: This cross-sectional study collected demographic, COVID-19-related, and HRQoL data from 224 IBD patients who had previously received treatment at Nanjing BenQ Medical Center. Participants completed an online survey between January 9, 2023, and January 23, 2023. The SIBDQ was used to assess HRQoL. Statistical analysis was performed using SPSS version 26. RESULTS: The study found that UC patients reported higher HRQoL compared to CD patients (p = 0.037). Patients who perceived themselves as less susceptible to COVID-19 had higher scores (p = 0.006 and p = 0.009). Those whose work or study was unaffected also had higher scores (p < 0.001 and p = 0.002). Additionally, irregular medication adherence was associated with lower HRQoL scores (p = 0.014 and p = 0.007). Multivariate linear regression results showed that IBD patients whose work or study was affected during the COVID-19 pandemic scored lower than those who were not affected (p = 0.038; 95% CI, -7.96 to -0.25). Patients who discontinued IBD medication scored higher than those with irregular medication use (p = 0.020; 95% CI, 1.00 to 10.90). CONCLUSIONS: This study highlights the significant impact of the COVID-19 pandemic on the HRQoL of IBD patients. The findings emphasize the need for integrated care addressing both the physical and psychological aspects of IBD.
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COVID-19 , Enfermedades Inflamatorias del Intestino , Calidad de Vida , Humanos , COVID-19/epidemiología , COVID-19/psicología , Masculino , Femenino , Estudios Transversales , China/epidemiología , Adulto , Persona de Mediana Edad , Enfermedades Inflamatorias del Intestino/psicología , Enfermedades Inflamatorias del Intestino/tratamiento farmacológico , SARS-CoV-2 , Cumplimiento de la Medicación/estadística & datos numéricos , Cumplimiento de la Medicación/psicología , Encuestas y Cuestionarios , Adulto Joven , Política de SaludRESUMEN
Introduction: Hidradenitis suppurativa (HS) is a chronic inflammatory disorder affecting the pilosebaceous unit in intertriginous body areas, and recent research suggests an association with periodontitis. Aim: To assess oral health-related quality of life (OHRQoL) in patients with HS diagnosed additionally with periodontitis and to compare it to patients with periodontitis alone. Material and methods: The study involved 55 HS patients, with 25 in the HS + P group (both HS and periodontitis) and matched controls in the periodontitis-only group (P group). Outcomes were assessed using the Oral Health Impact Profile (OHIP-14) questionnaire. Results: No significant difference was observed in the mean OHIP-14 total score between the HS + P group and the P group. Patients with HS + P were less likely to undergo the dental evaluation and floss their teeth less frequently compared to the P group. Conclusions: The findings reveal that the coexistence of HS in patients with periodontitis does not significantly influence OHRQoL. Lower dental evaluation frequency and less frequent flossing in HS+P patients suggest reduced attention to oral health practices.
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This systematic literature review (SLR) assessed the humanistic and economic burden of focal epilepsy and primary generalized tonic-clonic seizures (PGTCS) in adults to evaluate these domains in both populations and identify evidence gaps to inform future research. A search was conducted on December 7, 2022, using MEDLINE and Embase to identify studies published from 2012 onwards reporting humanistic burden (patient-reported or caregiver-reported outcomes or utilities, qualitative evaluations), economic burden (productivity loss, caregiver and societal costs of epilepsy), and sleep-related outcomes. Of the 2830 citations identified, 136 were included. Most studies were in the focal epilepsy population; very few studies reported outcomes in the PGTCS population. The presence of epilepsy-specific instruments varied based on the domain evaluated. Epilepsy exerted considerable humanistic and economic burden. Indicators of poor disease control (e.g., high seizure frequency, resistance to anti-seizure medications, polypharmacy) increased epilepsy burden. Seizure frequency and type, disease severity, and polypharmacy also affected work productivity. Adults with epilepsy, particularly focal epilepsy, reported higher indirect costs, more sick days accrued, and early entry into retirement. Caregivers similarly reported high productivity loss and absenteeism related to caregiving duties. The results of this SLR highlight the high humanistic and economic burden of focal epilepsy and PGTCS, although limited data were available for the PGTCS population. The results include patient-reported outcome data specific to focal epilepsy and PGTCS, expanding the limited humanistic burden evidence identified in previous reviews, and show the effect of poor disease control on individuals' lives and as a driver of indirect costs. PLAIN LANGUAGE SUMMARY: Our systematic literature review identified studies that evaluated the impact of focal epilepsy and primary generalized tonic-clonic seizures on patients and their caregivers. We found that focal epilepsy negatively impacted patients' mental health and sleep and was associated with higher indirect costs and lower work productivity in people with more severe disease. The impact of primary generalized tonic-clonic seizures on patients was rarely reported, and future research is needed.
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BACKGROUND: Few studies investigate the relationship between neighborhood vulnerability and health-related quality-of-life (HRQOL) in the childhood cancer population. This study evaluated the impact of neighborhood vulnerability on HRQOL among adult survivors of childhood cancer. METHODS: This cross-sectional study included 4,393 adult survivors of childhood cancer from the St Jude Lifetime Cohort Study. At the baseline (2007-2020), HRQOL was assessed using the SF36v2's physical/mental components summaries (PCS/MCS). Neighborhood vulnerability was assessed using the overall, domain, and indicator-specific scores of the Social Vulnerability Index (SVI) and Minority Health SVI (MHSVI). Multivariable logistic regression was used to evaluate associations of neighborhood vulnerability (quartiles: Q1-Q4) with impaired HRQOL (1SD below the norm), adjusting for diagnosis, demographics, personal socioeconomic status (SES), lifestyle, and chronic health condition burden. Interactions of SVI/MHSVI with personal SES on impaired HRQOL were analyzed. RESULTS: Among survivors, 51.9% were male, averaging 30.3 years of age at evaluation and 21.5 years since diagnosis. Comparing neighborhoods with higher vs lower vulnerability (Q4 vs Q1), overall (OR = 1.60, 95%CI = 1.19-2.16) and domain-specific vulnerability (socioeconomic: OR = 1.59, 95%CI = 1.18-2.15; household composition: OR = 1.54, 95%CI = 1.16-2.06; housing/transportation: OR = 1.33, 95%CI = 1.00-1.76; medical vulnerability: OR = 1.60, 95%CI = 1.22-2.09) were significantly associated with impaired PCS, but not MCS. Residing in neighborhoods lacking urgent care clinics was significantly associated with impaired PCS (OR = 1.39, 95%CI = 1.08-1.78). Having lower vs higher personal education and living in higher vulnerability neighborhoods were associated with more impaired PCS (P interaction=0.021). CONCLUSIONS: Specific aspects of neighborhood vulnerability increase the risk for impaired physical HRQOL. Addressing these neighborhood factors is essential to enhance the HRQOL of survivors.
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PURPOSE: Studies evaluating oncological inpatient rehabilitation rarely include follow-up intervals beyond 6 months and larger proportions of patients other than those with breast cancer. Therefore, this study investigated changes in health-related quality of life (HRQoL), depression, and fear of progression of patients with breast, colorectal, or prostate cancer from the beginning to the end of oncological rehabilitation and a 9-month follow-up. METHODS: Three hundred seventy-seven patients with breast, colorectal, or prostate cancer undergoing oncological inpatient rehabilitation (median age 61 years, 49% female) completed the EORTC QLQ-C30, the PHQ-9, and the FoP-Q-SF at each measurement point. Data analysis used 3 (tumor site) × 3 (time of measurement) repeated measures ANCOVAs with patient age and time since diagnosis as covariates. At each time point, we also compared our sample to the general population on the measures used. RESULTS: Having controlled for the covariates, we found significant effects of tumor site, which were small except for Diarrhea. Effects of time of measurement were often significant and in part at least medium in size indicating improvement of HRQoL and depression during rehabilitation. At follow-up, some HRQoL domains and depression deteriorated. Women with breast cancer, in particular, showed a greater decrease in emotional functioning then. Compared to the general population, the sample's HRQoL and depression were significantly worse on most occasions. CONCLUSION: Oncological inpatient rehabilitation may improve HRQoL. The subsequent and in part differential deterioration in some HRQoL domains suggests a need for further follow-up care within survivorship programs.
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Neoplasias de la Mama , Neoplasias Colorrectales , Depresión , Progresión de la Enfermedad , Miedo , Pacientes Internos , Neoplasias de la Próstata , Calidad de Vida , Humanos , Masculino , Femenino , Persona de Mediana Edad , Estudios Longitudinales , Anciano , Depresión/etiología , Neoplasias de la Mama/rehabilitación , Neoplasias de la Mama/psicología , Miedo/psicología , Pacientes Internos/psicología , Pacientes Internos/estadística & datos numéricos , Neoplasias de la Próstata/rehabilitación , Neoplasias de la Próstata/psicología , Neoplasias Colorrectales/rehabilitación , Neoplasias Colorrectales/psicología , Adulto , Neoplasias/psicología , Neoplasias/rehabilitación , Encuestas y Cuestionarios , Estudios de Seguimiento , Anciano de 80 o más AñosRESUMEN
OBJECTIVES: This crossover randomized controlled clinical trial (RCT) aimed to evaluate the clinical applicability of three-dimensional printed dentures (CAD-3DPs) by comparing two fabricated complete dentures, CAD-3DPs and conventional complete dentures (CCDs), and assess the non-inferiority of CAD-3DPs. The hypothesis was that CAD-3DPs would be inferior to CCDs in terms of the oral health-related quality of life (OHRQoL) and patient satisfaction. METHODS: This single-blind RCT was conducted at two university hospitals. The participants included adult patients with edentulous maxillary and mandibular arches, who had existing complete dentures and were willing to use new complete dentures. Eighteen participants were assigned to two groups: CCD-CAD-3DP and CAD-3DP-CCD, based on the order of denture delivery. Both sets of maxillary and mandibular CCDs and CAD-3DPs were delivered to all the participants. The OHRQoL using Oral Health Impact Profile for Edentulous Patients (OHIP-EDENT-J) was considered the primary outcome. General satisfaction using a 100-mm visual analog scale was also evaluated as a suboutcome. RESULTS: Based on the non-inferior test on the total score of the OHIP-EDENT and each score of the seven conceptual subdomains, the lower limit of the 95 % confidence interval was < 2.65 in seven domains. Therefore, CAD-3DP was judged to be non-inferior to CCD. Patient satisfaction was not significantly different between the CCD and CAD-3DP groups (p > 0.05). CONCLUSIONS: This RCT revealed that CAD-3DP is comparable to CCD based on the OHIP-JDENT scores and patient satisfaction. CLINICAL SIGNIFICANCE: CAD-3DP is clinically applicable and comparable to CCD in terms of patient-reported outcomes.
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Background: Parkinson's Disease significantly impacts health-related quality of life, with the Parkinson's Disease Questionnaire-39 extensively used for its assessment. However, predicting such outcomes remains a challenge due to the subjective nature and variability in patient experiences. This study develops a machine learning model using accessible clinical data to enable predictions of life-quality outcomes in Parkinson's Disease and utilizes explainable machine learning techniques to identify key influencing factors, offering actionable insights for clinicians. Methods: Data from the Parkinson's Real-world Impact Assessment study (PRISM), involving 861 patients across six European countries, were analyzed. After excluding incomplete data, 627 complete observations were used for the analysis. An ensemble machine learning model was developed with a 90% training and 10% validation split. Results: The model demonstrated a Mean Absolute Error of 4.82, a Root Mean Squared Error of 8.09, and an R2 of 0.75 in the training set, indicating a strong model fit. In the validation set, the model achieved a Mean Absolute Error of 11.22, a Root Mean Squared Error of 13.99, and an R2 of 0.36, showcasing moderate variation. Key predictors such as age at diagnosis, patient's country, dementia, and patient's age were identified, providing insights into the model's decision-making process. Conclusions: This study presents a robust model capable of predicting the impact of Parkinson's Disease on patients' quality of life using common clinical variables. These results demonstrate the potential of machine learning to enhance clinical decision-making and patient care, suggesting directions for future research to improve model generalizability and applicability.
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BACKGROUND: Patients with open fractures often experience complications during their injury. The treatments incur high costs. Interdisciplinary cooperation between different medical disciplines may improve treatment outcomes. Such cooperation has not yet been envisaged in the German health care system. OBJECTIVE: The aim of the study is to improve the treatment of fractures with open soft tissue damage or postoperative complications in terms of duration and sustainability in a region in northwest Germany. Largely standardized diagnostics and therapy are intended to optimize processes in hospitals. In addition, a reduction in the duration of treatment and treatment costs is to be achieved. METHODS: Using a digital platform, physicians from 31 hospitals present patient cases to an interdisciplinary group of experts from the fields of plastic surgery, infectiology, hygiene, and others. The group of experts from the environment of the University Hospital Münster promptly makes a joint treatment recommendation for the individual case. The plan is to examine 3300 patients with open fractures or surgical complications. As consortium partners, there are also 3 statutory health insurance companies. The extent to which the therapy recommendations are effective and contribute to cost reduction in the health care system will be empirically investigated in a stepped-wedge cluster-randomized design. In addition, medical and nonmedical professional groups involved in the project will be asked about their work in the project (in total, 248 clinic employees). The primary outcome is the complication rate of open fractures or the occurrence of postoperative complications. As secondary outcomes, the number of antibiotics administered, limb function, and quality of life will be assessed. The health economic evaluation refers to the costs of health services and absenteeism. For the work-related evaluation, workload, work engagement, work-related resources, readiness for technology, and ergonomic aspects of the new telemedical technology will be collected. In addition, clinic employees will give their assessments of the success of the project in a structured telephone interview based on scaled and open-ended questions. RESULTS: The project started in June 2022; data collection started in April 2023. As of mid-June 2024, data from 425 patients had been included. In total, 146 members of staff had taken part in the questionnaire survey and 15 had taken part in the interviews. CONCLUSIONS: Standardized treatment pathways in the standard care of patients with open fractures and postoperative infections will be established to reduce complications, improve chances of recovery, and reduce costs. Unnecessary and redundant treatment steps will be avoided through standardized diagnostics and therapy. The interdisciplinary treatment perspective allows for a more individualized therapy. In the medium term, outpatient or inpatient treatment centers specialized in the patient group could be set up where the new diagnostic and therapeutic pathways could be competently applied. TRIAL REGISTRATION: German Clinical Trials Register DRKS00031308; https://drks.de/search/de/trial/DRKS00031308. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/57820.
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Fracturas Abiertas , Humanos , Fracturas Abiertas/cirugía , Alemania , Extremidad Inferior/cirugía , Extremidad Inferior/lesiones , Infección de la Herida Quirúrgica/economía , Infección de la Herida Quirúrgica/terapia , Infección de la Herida Quirúrgica/prevención & control , Grupo de Atención al Paciente , Complicaciones Posoperatorias/epidemiología , Femenino , MasculinoRESUMEN
BACKGROUND: Parkinson's disease (PD) substantially contributes to poor functional outcomes, loss in productivity, and poor health-related quality of life (HRQoL). Despite the existence of various scales, there is a notable gap in existing HRQoL reviews with regard to the availability of Arabic validated scales. As a response to this gap, the aim of our scoping review is to identify validated scales, focusing on their psychometric validation procedures, to contribute valuable insights to the understanding of HRQoL among the Arabic-speaking people with PD. METHODS: A scoping review was conducted at the end of December 2022, using the Medline and Embase databases. The focus of this review was on examining the psychometric properties and validation procedures of included scales. Articles were included in the full-text screening process if they focused on people with PD of any age, included a scale measuring HRQoL in Arabic, and were written in English, French, or Arabic. RESULTS: After applying inclusion/exclusion criteria, 10 studies were selected to analyze HRQoL scales validated in people with PD. However, the PDQ-39 is the only HRQol PD specific scales validated in the Arabic language. Five studies validated in people with PD were identified in the context of instrument validation (3 generic, 1 specific validated in 2 studies). CONCLUSION: There are several HRQoL measurement scales for people with PD. However, only one specific HRQoL instrument has been validated in Arabic for people with PD. For the remaining instruments identified they were just used in people with PD without being validated in this population.
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Enfermedad de Parkinson , Psicometría , Calidad de Vida , Humanos , Enfermedad de Parkinson/psicología , Encuestas y Cuestionarios/normas , Traducciones , Reproducibilidad de los ResultadosRESUMEN
In this cross-sectional study, we aimed to identify subgroups of job satisfaction and health-related quality of life (HRQoL) in Chinese male nurses and examine the factors associated with subgroup profiles. A convenience sample of 626 Chinese male nurses were enrolled from January to October 2021. Latent profile analysis was performed to identify profiles based on self-esteem, psychological resilience, social support, neuroticism, perceived prejudice, occupational stress, job satisfaction, and HRQoL. Chi-squared tests were used to examine predictors of profiles. Results indicated that a three-profile model provided the best fit: low job satisfaction and health (9.90%), moderate job satisfaction and health (64.06%), and high job satisfaction and health (26.04%). The average number of monthly night shifts was negatively correlated with the male nurses' subgroups. Psychological resilience, social support, and neuroticism were the key factors associated with the HRQoL of male nurses, while perceived prejudice, occupational stress, and self-esteem were the key factors associated with job satisfaction. Nurse administrators could improve their job satisfaction and health by reducing perceived prejudice, and job stress, increasing organizational support and resilience.
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Background: Young adults represent a third of the United Kingdom prison population and are at risk of poor health outcomes, including drug and alcohol misuse, self-harm and suicide. Court diversion interventions aim to reduce the negative consequences of criminal sanctions and address the root causes of offending. However, evidence of their effectiveness has not yet been established. The Gateway programme, issued as a conditional caution, aimed to improve the life chances of young adults committing low-level offences. Participants agreed not to reoffend during the 16-week caution and, following a needs assessment, received individual support from a Gateway navigator and attended two workshops encouraging analysis of own behaviour and its consequences. Objective: To evaluate the effectiveness and cost-effectiveness of Gateway in relation to health and well-being of participants compared to usual process (court summons or a different conditional caution). Design, setting and participants: Pragmatic, multisite, parallel-group, superiority randomised controlled trial with two 6-month internal pilots and a target sample size of 334. Randomisation between Gateway and usual process was on a 1 : 1 basis. Four Hampshire Constabulary sites recruited 18- to 24-year-old residents of Hampshire and Isle of Wight who were questioned for an eligible low-level offence. Semistructured interviews were also held with a sample of Gateway programme participants, staff and police study recruiters. Main outcome measures: Primary outcome was the Warwick-Edinburgh Mental Wellbeing Scale score at 12 months. Secondary outcomes included health status, alcohol and drug use, recidivism and resource use. Results: Recruitment commenced in October 2019 and the trial stopped in April 2021. A total of 191 participants were recruited, with 109 randomised to Gateway and 82 to usual process. Due to an initial overestimation of potentially eligible young people and low retention rates, recruitment targets were adjusted, and a range of mitigating measures introduced. Although recruitment broadly met study progression criteria [35/50 (70%) Pilot 1: 64/74 (86%) Pilot 2], retention was low throughout (overall: data collected at week 4 was 50%: at week 16 it was 50%: 1-year 37%). Low retention was multifactorial, with one of the main barriers being difficulties contacting participants. It was therefore not possible to complete the randomised controlled trial or the health economics analyses. Qualitative interviews held with 58 individuals yielded rare insights into the benefits and limitations of this type of intervention, as well as barriers and facilitators in relation to recruitment in this setting. Limitations: Despite close collaboration with the police to address recruitment and consent issues, expansion of the inclusion criteria and recruitment area and introducing other measures, the researchers were unable to collect sufficient data within an acceptable timeframe. Conclusions: The Gateway study was a unique endeavour to gather evidence for a potentially life-changing intervention for an underserved population. The experience gained indicates that randomised controlled trials of interventions, with a health-related outcome, are possible in this setting but point towards the need for conservative recruitment and retention estimates in this target population. Other study designs should be considered. The qualitative evaluation provided a range of valuable lessons for those seeking to design similar interventions or conduct research in similar settings. Study registration: This study is registered as ISRCTN11888938. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Public Health Research programme (NIHR award ref: 16/122/20) and is published in full in Public Health Research; Vol. 12, No. 7. See the NIHR Funding and Awards website for further award information.
Young adults who commit low-level offences often have many health and social needs, making them vulnerable to physical and mental health problems. The Gateway programme was a conditional caution developed to address the underlying causes of low-level offending in young people aged 1824 years and hence improve their life chances. In Gateway, a mentor assessed the young person's needs and supported them, signposting to healthcare, housing or other services as required. The young people also participated in two workshops, analysing the causes and consequences of their behaviour. To find out if Gateway improved health and reoffending rates, a group of those who received a Gateway conditional caution were compared with a group of those receiving a court summons or a different conditional caution. Of the 191 participants recruited to the study, 109 were randomised to Gateway and 82 to the usual process. However, the researchers had significant difficulties getting hold of the study participants on the phone and they were unable to collect enough information from them to be able to say whether Gateway worked. The researchers introduced various changes to overcome this, but in the end had to stop the study early. As part of the study, the researchers interviewed 28 Gateway programme participants, 17 Gateway project staff and 13 police officers and staff who had been recruiting into the study. From the interviews the study discovered the perceived benefits of Gateway, how programmes like this could be improved and which factors helped or got in the way of doing research in the police setting. The Gateway study aimed to provide evidence for a potentially life-changing intervention for vulnerable young adults. Although it proved impossible to complete the study, the lessons learnt from running it should help colleagues design similar programmes or plan research studies with similar populations or in similar settings.
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Análisis Costo-Beneficio , Criminales , Humanos , Masculino , Adulto Joven , Femenino , Adolescente , Reino Unido , Criminales/psicología , Salud Mental , Estado de Salud , Evaluación de Programas y Proyectos de SaludRESUMEN
BACKGROUND: The R-Scale-PF was proposed to evaluate the health-related quality of life (HRQoL) in patients with idiopathic pulmonary fibrosis (IPF). We generated a German version of the R-Scale-PF (GR-Scale), representing the first translation of the questionnaire into another language and assessed HRQoL longitudinally in various interstitial lung diseases (ILDs) using the R-Scale-PF scoring system at a specialized ILD centre. METHODS: We have translated the questionnaire in accordance with the WHO translation guidelines and applied it to 80 ILD patients of our department, with follow-ups after 3-6 months, assessing its internal consistency, floor and ceiling effects, concurrent validity, known-groups validity, and its responsiveness to changes over time. RESULTS: At baseline, all 80 patients completed the GR-Scale. In 70 patients (87.5%), follow-up data could be obtained after 4.43 ± 1.2 months. The GR-Scale demonstrated acceptable internal consistency (Cronbach's α 0.749) and slight floor effects. Concurrent validity analysis showed weak but significant correlations with forced vital capacity (FVC; r=-0.282 p = 0.011) and diffusion capacity for carbon monoxide (DLco; r=-0.254 p = 0.025). In the follow-up analysis, moderate correlations were found with FVC (r=-0.41 p < 0.001) and DLco (r=-0.445 p < 0.001). No significant difference in the total score was found between patients with IPF (n = 10) and with non-IPF ILDs (n = 70). The GR-Scale successfully discriminated between groups of varying disease severity based on lung function parameters and the need for long-term oxygen therapy (LTOT). Furthermore, it was able to distinguish between patients showing improvement, stability or decline of lung function parameters. CONCLUSION: Our prospective observational pilot study suggests that the GR-Scales is a simple and quick tool to measure HRQoL in patients with ILDs, thus providing an important additional information for the clinical assessment of ILD patients. TRIAL REGISTRATION: Our study was retrospectively registered in the German Clinical Trial Register (DRKS) on 02.11.2022 (DRKS-ID: DRKS00030599).
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Enfermedades Pulmonares Intersticiales , Calidad de Vida , Humanos , Masculino , Femenino , Anciano , Enfermedades Pulmonares Intersticiales/fisiopatología , Persona de Mediana Edad , Encuestas y Cuestionarios , Capacidad Vital , Reproducibilidad de los Resultados , Fibrosis Pulmonar Idiopática/fisiopatología , Fibrosis Pulmonar Idiopática/psicología , Alemania , TraduccionesRESUMEN
BACKGROUND: Most women experience vasomotor symptoms (VMS) during the menopausal transition. A 15-week resistance training intervention (RTI) significantly reduced moderate-to-severe VMS (MS-VMS) and improved health-related quality of life (HRQoL) and cardiovascular risk markers in postmenopausal women. Whether a short RTI could have long-term effects is unknown. We aimed to investigate whether there were intervention-dependent effects two years after a 15-week RTI on MS-VMS frequency, HRQoL, and cardiovascular risk markers in postmenopausal women. METHODS: This observational prospective cohort study is a follow-up to a randomized controlled trial (RCT) on a 15-week RTI in postmenopausal women (n = 57). The control group had unchanged low physical activity during these first 15 weeks. At the follow-up contact two years post-intervention, 35 women agreed to participate in an additional physical visit at the clinic with clinical testing, blood sampling, and magnetic resonance imaging, identical to the protocol at the baseline visit at the start of the RCT. RESULTS: Although all women showed reduced MS-VMS and increased moderate-to-vigorous physical activity (MVPA) over the 2-year follow-up compared to baseline, the groups from the original RCT (intervention group; IG, control group; CG) changed differently over time (p < 0.001 and p = 0.006, respectively) regarding MS-VMS. The IG maintained a significantly lower MS-VMS frequency than the CG at the 6-month follow-up. At the 2-year follow-up, there was no significant difference between the original RCT groups. No significant changes over time or differences between groups were found in HRQoL or cardiovascular risk markers. However, significant interactions between original RCT groups and time were found for visceral adipose tissue (p = 0.041), ferritin (p = 0.045), and testosterone (p = 0.010). CONCLUSIONS: A 15-week resistance training intervention reduced MS-VMS frequency up to six months post-intervention compared to a CG, but the effect was not maintained after two years. The RTI did neither contribute to preserved improvements of cardiovascular risk markers nor improved HRQoL after two years compared to a CG. TRIAL REGISTRATION: Clinical trials.gov registered ID: NCT01987778, trial registration date 2013-11-19.
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Enfermedades Cardiovasculares , Posmenopausia , Calidad de Vida , Entrenamiento de Fuerza , Humanos , Femenino , Entrenamiento de Fuerza/métodos , Posmenopausia/fisiología , Persona de Mediana Edad , Estudios de Seguimiento , Estudios Prospectivos , Enfermedades Cardiovasculares/prevención & control , Factores de Riesgo de Enfermedad Cardiaca , Sofocos/terapia , Sistema Vasomotor/fisiopatología , Ejercicio Físico/fisiología , Ejercicio Físico/psicología , Biomarcadores/sangreRESUMEN
BACKGROUND: Polypharmacy and inappropriate drug use are associated with adverse health outcomes in older people. Collaborative interventions between geriatricians and general practitioners have demonstrated effectiveness in improving clinical outcomes for complex medication regimens in home-dwelling patients. Since 2012, Norwegian municipalities have established municipal in-patient acute care (MipAC) units, designed to contribute towards reducing the number of hospital admissions. These units predominantly serve older people who typically benefit from multidisciplinary approaches. The primary objective of this study is to evaluate the effect of cooperative medication reviews conducted by MipAC physicians, supervised by geriatricians, and in collaboration with general practitioners, on health-related quality of life and clinical outcomes in MipAC patients ≥ 70 years with polypharmacy. Additionally, the study aims to assess the carbon footprint of the intervention. METHODS: This is a randomized, single-blind, controlled superiority trial with 16 weeks follow-up. Participants will be randomly assigned to either the control group, receiving usual care at the MipAC unit, or to the intervention group which in addition receive clinical medication reviews that go beyond what is considered usual care. The medication reviews will evaluate medication appropriateness using a structured but individualized framework, and the physicians will receive supervision from geriatricians. Following the clinical medication reviews, the MipAC physicians will arrange telephone meetings with the participants' general practitioners to combine their assessments in a joint medication review. The primary outcome is health-related quality of life as measured by the 15D instrument. Secondary outcomes include physical and cognitive functioning, oral health, falls, admissions to healthcare facilities, and mortality. DISCUSSION: This study aims to identify potential clinical benefits of collaborative, clinical medication reviews within community-level MipAC units for older patients with polypharmacy. The results may offer valuable insights into optimizing patient care in comparable municipal healthcare settings. TRIAL REGISTRATION: The study was registered prospectively on ClinicalTrials.gov 30.08.2023 with identifier NCT06020391.