The Broader Effects of Delayed Progression to End-Stage Kidney Disease: Delaying the Inevitable or a Meaningful Change?

A global rise in the prevalence of patients with chronic kidney disease (CKD) with end-stage kidney disease (ESKD) has led to a considerable and increasing burden to health systems, patients, and society. Sodium-glucose cotransporter 2 (SGLT2) inhibitors are proven to reduce incidence of cardio-renal outcomes, including onset of ESKD. Recent post hoc analyses of SGLT2 inhibitor trials extrapolate substantial delays in the average time to ESKD over a patient's lifetime. In this article, we explore the possible real-world effects of such a delay by considering the available evidence reporting outcomes following onset of ESKD. From the patient perspective, a delay in reaching ESKD could substantially improve health-related quality of life and result in additional life years without the need for kidney replacement therapies, a target relevant to all CKD subpopulations. Furthermore, should a patient initiate dialysis at an older age as a result of CKD progression, the time spent in receipt of dialysis, and therefore associated healthcare costs, may also be reduced. A delay in progression may also lead to changes in the management of ESKD, such as increased election of conservative care in preference to dialysis, particularly in elderly populations. For younger patients with CKD, those who reach ESKD while employed face considerable work impairment and productivity loss, as may families and care partners of working age. Therefore, a delay to the onset of ESKD will reduce the proportion of their working lives affected by productivity losses or unemployment due to medical reasons. In conclusion, optimised treatment of CKD may lead to a shift in treatment options, but proper and timely implementation is essential for the realisation of improved outcomes.

Oral health-related quality of life in Fanconi anemia: a cross-sectional study.

PURPOSE: To evaluate the oral health-related quality of life (OHRQoL) of individuals diagnosed with Fanconi anemia (FA). METHODS: A cross-sectional study was conducted with FA patients from two Brazilian referral centers. Participants underwent a complete dental, periodontal, and oral mucosa examination, as well as assessment of resting salivary flow. The short version of the Oral Health Impact Profile (OHIP-14) questionnaire was administered. Descriptive and bivariate analyses were performed, followed by multivariate analysis to examine the impact of independent variables on OHRQoL. RESULTS: The study included 20 (57.1%) males and 15 (42.9%) females, with a mean age of 18.9 years. Oral leukoplakia (OL) was found in 18 individuals. The overall OHIP-14 score was 9.9 ± 10.5. Individuals aged ≥ 16 years had higher OHIP-14 scores, indicating worse OHRQoL for physical pain (p = 0.007), psychological discomfort (p = 0.001), physical disability (p = 0.03), psychological disability (p = 0.001), handicap (p = 0.004), and overall score (p = 0.007). Females reported more negative OHRQoL than males for physical pain (p = 0.02), psychological discomfort (p = 0.03), psychological disability (p = 0.009), and overall score (p = 0.02). Individuals with OL had an overall OHIP-14 score 1.83 times higher than those without OL (95% CI: 1.02-3.28; p = 0.04). Lower salivary flow correlated with higher overall OHIP-14 scores (95% CI: 0.14-0.84; p = 0.01). CONCLUSION: This study represents the first attempt to evaluate OHRQoL in individuals with FA. The presence of OL and reduced salivary flow were identified as predictors of a negative impact on OHRQoL. It is imperative to integrate patients' quality of life in the clinical treatment protocols for the FA population.

Smoking and Health-Related Quality of Life in Patients With Multiple Sclerosis From Latin America.

BACKGROUND: Tobacco smoking is an important, modifiable, environmental risk factor for multiple sclerosis (MS) with a relevant impact on health-related quality of life (HRQOL). We aimed to assess the use of tobacco in individuals with MS from Latin America (LATAM), and its impact on HRQOL. METHODS: We conducted a cross-sectional study based on a LATAM web-based survey. Demographics, social and clinical data, information on physical disability, and HRQOL scores were collected using the MS Impact Scale-29 (MSIS-29), the Fatigue Severity Scale (FSS), and the Hospital Anxiety and Depression Scale-Anxiety (HADS-A). Individuals with MS were classified at the time of the survey as follows: never-smokers (ie, patients who reported they had never smoked), past smokers (those who had smoked tobacco but not during the past year), or current smokers. For the analysis, groups were compared. RESULTS: 425 patients (74.6% female) from 17 LATAM countries were included, mean age 43.6 ± 11 years and median Expanded Disability Status Scale score 2. There were 122 (28.7%) current smokers, 178 (41.9%) past smokers, and 125 (30.4%) never-smokers. Current smokers had significantly higher MSIS-29 physical (physical worsening), FSS (fatigue), and HADS-A (anxiety) scores compared with past and never-smokers after being adjusted for covariables. No significant differences were observed in any of the other analyzed demographic, clinical, and therapeutic variables. Thirty percent of the current and past smokers groups had never had their neurologists discuss smoking cessation with them. CONCLUSIONS: Individuals with MS who were current smokers had higher fatigue and anxiety scores and worse HRQOL compared with past and never-smokers.

Quality of Sleep and Mental Symptoms Contribute to Health-Related Quality of Life after COVID-19 Pneumonia, a Follow-Up Study of More than 2 Years.

A follow-up study was designed to assess correlations among physical signs, quality of sleep, common mental symptoms, and health-related quality of life after moderate to severe COVID-19 pneumonia. Daily changes in dyspnoea and pulse oximetry were recorded (200 days), and four evaluations (in >2 years) were performed on quality of sleep, mental symptoms, cognitive performance, and health-related quality of life. In a single center, 72 adults participated in the study (52.5 ± 13.7 years old), with no psychiatry/neurology/chronic lung/infectious diseases, chronic use of corticosteroids/immunosuppressive therapy, or pregnancy. Daily agendas showed delayed decreases in dyspnoea scores compared to pulse oximetry and heart rate recordings; however, changes in pulse oximetry were minimal. Slight changes in cognitive performance were related to the general characteristics of the participants (obesity and tobacco use) and with the severity of acute disease (MANCOVA, p < 0.001). Health-related quality of life gradually improved (MANCOVA, p < 0.004). During recovery, bad quality of sleep and mental symptoms (mainly attention/concentration) contributed to the subscores on health perception and vitality in the health-related quality of life assessment. Early mental support services including sleep hygiene could be beneficial during rehabilitation after acute COVID-19.

Physical Performance, Body Composition, and Oral Health in Community-Residing Older Adults: A Cross-Sectional Study.

Physical activity is essential for healthy aging. This study aimed to identify an association between physical performance, body fat percentage (%BF), and the perception of oral health-related quality of life (OHRQoL) in independent older adults. METHOD: A group of active older adults was selected from a government-sponsored reunion center in Mexico City. OHRQoL was assessed using the General Oral Health Index (GOHAI), and nutritional status was assessed using the Mini Nutritional Assessment (MNA) tool. A short physical performance battery (SPPB) was applied, and, for body composition, DXA (dual X-ray absorptiometry) was conducted. Data were analyzed using logistic regression models, and marginal probabilities were obtained. RESULTS: This study involved 366 participants; their mean age was 73.9 (±6.2) years, and 24.9% had type 2 diabetes mellitus (T2DM). OHRQoL information revealed that pain or discomfort in the oral cavity was perceived by 63.9% of the older adults during the previous three months. The SPPB score was low in 159 (43.44%) participants. The logistic regression model revealed that age (OR = 1.13, p < 0.001), T2DM (OR = 2.10, p = 0.009), the risk of malnutrition/malnutrition (OR = 1.76, p = 0.047), high %BF (OR = 1.09, <0.001), and poor OHRQoL (OR = 1.96, p = 0.009) were associated with deteriorated physical performance. CONCLUSION: OHRQoL self-perception, excess body fat, and nutritional status impacted physical performance. Aging well requires a comprehensive approach.

Neuropsychiatric drugs and a neurophysiological marker as predictors of health-related quality of life in patients with phantom limb pain.

OBJECTIVE: To explore the relationship between sociodemographic, clinical, and neurophysiological variables and health-related quality of life (HR-QOL) of patients with phantom limb pain. METHODS: This is a cross-sectional analysis of a previous clinical trial. Univariate and multivariate linear and logistic regression analyses were used to model the predictors of HR-QOL. We utilized a sequential modeling approach with increasing adjustment levels, controlling for age and sex, and other relevant clinical variables (time since amputation, level of amputation, and pain). HR-QOL was assessed by the SF-36 Health Survey and its eight subdomains. RESULTS: We analyzed baseline data from 92 patients with lower-limb amputations. They were mostly male (63%), 45.2 ± 15.6 years, with a mean time since amputation of 82.7 ± 122.4 months, and an overall SF-36 score of 55.9 ± 21.5. We found an association between intracortical facilitation in the affected hemisphere (ICF), gabapentin usage, and HR-QOL. ICF is a predictor of better HRQOL, whereas gabapentin usage was associated with a poorer HR-QOL, with the main model explaining 13.4% of the variance in the outcome. For the SF-36 subdomains, ICF was also a positive predictor for social functioning, bodily pain, and vitality, while medication usage was associated with lower scores in mental health, general health perception, bodily pain, and vitality. CONCLUSION: We found firsthand two new independent predictors of HR-QOL in individuals with PLP, namely, the neurophysiological metric ICF and gabapentin usage. These results highlight the role of the motor cortex excitability in the HR-QOL and stress the need for treatments that favor the neuroplastic adaptation after amputation, for which ICF may be used as a possible marker.

Treatment patterns and humanistic burden of malignant pleural mesothelioma in Spain.

PURPOSE: Malignant pleural mesothelioma (MPM) is an aggressive cancer with long latency and poor prognosis. The real-world treatment patterns and humanistic burden of MPM in an international cohort of patients were recently published. Spanish data are currently lacking and are reported here. METHODS/PATIENTS: Data were collected from three sources: physician-abstracted demographic, clinical and treatment characteristics of patients with MPM; patient-completed questionnaires on treatment satisfaction, symptoms, caregiver use, and impact of the disease; and caregiver-completed questionnaire reporting their activity and its impact on their daily life. RESULTS: The 241 patients in Spain were primarily elderly (median age: 67 years), male, retired/unemployed/on long-term sick leave, and diagnosed at stage IV with unresectable disease. Exposure to asbestos was detected (54%, 101/188). First-line treatment (1L) consisted primarily of doublet chemotherapy (86%, 207/241). Of 102 patients who completed 1L at data abstraction, 67 were receiving maintenance therapy, most commonly singlet chemotherapy with pemetrexed. Best supportive care was given to 29 patients, primarily after 1L (86.2%, 25/29). Symptom burden was high and health-related quality of life was poor and declined with progression: mean (SD) EQ-5D score and EQ-5D visual analogue scale score were 0.615 (0.285) and 60.8 (17.1) in 1L and 0.497 (0.370) and 56.1 (19.5) in second line. Overall, 67% of patients (162/241) required daily assistance from their caregiver, who reported an impact on their psychological well-being. CONCLUSIONS: Patients with MPM in Spain were overall treated according to treatment guidelines at the time. Nevertheless, a considerable burden of disease was reported by patients and caregivers.

COVID-19 and long-term impact on symptoms and Health-Related Quality of Life in Costa Rica: the RESPIRA cohort study.

BACKGROUND: Evidence continues to accumulate regarding the potential long-term health consequences of COVID-19 in the population. To distinguish between COVID-19-related symptoms and health limitations from those caused by other conditions, it is essential to compare cases with community controls using prospective data ensuring case-control status. The RESPIRA study addresses this need by investigating the lasting impact of COVID-19 on Health-related Quality of Life (HRQoL) and symptomatology in a population-based cohort in Costa Rica, thereby providing a robust framework for controlling HRQoL and symptoms. METHODS: The study comprised 641 PCR-confirmed, unvaccinated cases of COVID-19 and 947 matched population-based controls. Infection was confirmed using antibody tests on enrollment serum samples and symptoms were monitored monthly for 6 months post-enrolment. Administered at the 6-month visit (occurring between 6- and 2-months post-diagnosis for cases and 6 months after enrollment for controls), HRQoL and Self-Perceived Health Change were assessed using the SF-36, while brain fog, using three items from the Mental Health Inventory (MHI). Regression models were utilized to analyze SF-36, MHI scores, and Self-Perceived Health Change, adjusted for case/control status, severity (mild case, moderate case, hospitalized) and additional independent variables. Sensitivity analyses confirmed the robustness of the findings. RESULTS: Cases showed significantly higher prevalences of joint pain, chest tightness, and skin manifestations, that stabilized at higher frequencies from the fourth month post-diagnosis onwards (2.0%, 1.2%, and 0.8% respectively) compared to controls (0.9%, 0.4%, 0.2% respectively). Cases also exhibited significantly lower HRQoL than controls across all dimensions in the fully adjusted model, with a 12.4 percentage-point difference [95%CI: 9.4-14.6], in self-reported health compared to one year prior. Cases reported 8.0% [95%CI: 4.2, 11.5] more physical limitations, 7.3% [95%CI: 3.5, 10.5] increased lack of vitality, and 6.0% [95%CI: 2.4, 9.0] more brain fog compared to controls with similar characteristics. Undiagnosed cases detected with antibody tests among controls had HRQoL comparable to antibody negative controls. Differences were more pronounced in individuals with moderate or severe disease and among women. CONCLUSIONS: PCR-confirmed unvaccinated cases experienced prolonged HRQoL reductions 6 months to 2 years after diagnosis, this was particularly the case in severe cases and among women. Mildly symptomatic cases showed no significant long-term sequelae.

Severe rigid hip flexion-abduction contracture in cerebral palsy: a case report and review of the literature.

INTRODUCTION: severe, rigid hip abduction deformity in individuals with cerebral palsy (CP) is an exceptionally uncommon condition. This posture hinders the positioning in the wheelchair and the completion of basic activities of daily living (ADL). Addressing such severe deformities can be quite challenging. MATERIAL AND METHODS: a 14-year-old male, with spastic-dystonic quadriplegic CP, developed rigid and severe flexion-abduction contractures in both hips, characterized by 90 degrees of flexion and 100 degrees of abduction. These contractures severely impeded his ability to comfortably use a wheelchair and even pass through doorways. Performing basic ADLs became a significant challenge for both the patient and his caregivers. RESULTS: the treatment approach involved a two-stage surgical procedure, one for each hip, with a two-month interval between them. An extensive release of the fascia latae, gluteus maximus, external rotators, and hip flexors; in combination with a proximal femur osteotomy were performed. To maintain the corrections achieved, long-leg casts connected with two bars were employed, followed by orthotic support and physiotherapy. Following the procedure, lower limb adduction was achieved, and the patient and caregivers were highly satisfied, as ADLs and basic caregiving had been greatly facilitated. CONCLUSIONS: while the available literature on the management of severe rigid abduction hip contractures in non-ambulatory CP patients is limited, and treatment options are often complex, the present case underscores the effectiveness of a comprehensive approach involving soft tissue release and bone surgery. Achieving a more favorable wheelchair positioning and facilitating basic ADLs and care represents a significant success for patients and families.

INTRODUCCIÓN: la deformidad severa y rígida en abducción de cadera en individuos con parálisis cerebral (PC) es una condición infrecuente. Esta postura dificulta el posicionamiento en la silla de ruedas y la realización de actividades básicas de la vida diaria (AVD). El tratamiento de estas deformidades tan severas puede ser todo un reto. MATERIAL Y MÉTODOS: varón de 14 años, con PC tetrapléjica espástica-distónica, que desarrolló contracturas rígidas y severas de flexión-abducción en ambas caderas, caracterizadas por 90 grados de flexión y 100 grados de abducción. Estas contracturas impedían gravemente su capacidad para utilizar cómodamente una silla de ruedas e incluso pasar por las puertas. La realización de actividades básicas de la vida diaria se convirtió en un reto importante tanto para el paciente como para sus cuidadores. RESULTADOS: el tratamiento consistió en una intervención quirúrgica en dos fases, una para cada cadera, con un intervalo de dos meses entre ellas. Se realizó una amplia liberación de la fascia lata, el glúteo mayor, los rotadores externos y los flexores de la cadera; en combinación con una osteotomía proximal del fémur. Para mantener las correcciones conseguidas, se emplearon escayolas de pierna larga conectadas con dos barras, seguidas de soporte ortésico y fisioterapia. Tras la intervención, se consiguió la aducción de los miembros inferiores y el paciente y los cuidadores se mostraron muy satisfechos, ya que se habían facilitado en gran medida las AVD y los cuidados básicos. CONCLUSIONES: aunque la bibliografía disponible sobre el tratamiento de las contracturas rígidas graves de la cadera en abducción en pacientes no deambulantes con PC es limitada, y las opciones de tratamiento suelen ser complejas, el presente caso subraya la eficacia de un enfoque integral que incluye la liberación de los tejidos blandos y la cirugía ósea. Conseguir una posición más favorable en la silla de ruedas y facilitar las AVD básicas y los cuidados representa un éxito significativo para los pacientes y sus familias.

General and Specific Quality of Life Course of Individuals with Different Levels of Stroke Severity: A One-Year Prospective Longitudinal Study.

OBJECTIVES: To compare the course of generic and specific health-related quality of life (HRQOL) of individuals with stroke, and its physical, mental, and social domains, at three, six, and 12 months after hospital discharge, considering the levels of stroke severity. METHODS: This is a longitudinal study, in stroke individuals, assessed during hospital admission by the National Institutes of Health Stroke Scale (NIHSS), and divided into mild (NIHSS ≤3) or moderate/severe (NIHSS ≥4) disease. At three, six, and 12 months after hospital discharge, the individuals were assessed for generic (Short Form Health Survey-36: total score and physical and mental domains) and specific (Stroke Specific Quality of Life Scale: total score and social domain) HRQOL. A 2 × 2 repeated measures analysis of variance (ANOVA) with post-hoc was applied. RESULTS: 146, 122, and 103 individuals were assessed at three, six and 12 months, respectively HRQOL courses showed different behaviors according to stroke severity (3.37≤F ≤ 4.62; 0.010≤p ≤ .036). Individuals with mild stroke showed significant changes in the physical domain, with a reduction between three and six months, and an increase between six and 12. Moderate/severe individuals showed a significant increase in all HRQOL variables between three and six months, and a maintenance of values for almost all variables, except for physical domain, which improved significantly between three and six months, and got significantly worse between six and 12. CONCLUSIONS: HRQOL during the first year after stroke showed distinct trajectories, being stroke severity an important factor in identifying stroke subjects at risk of HRQOL decline. CLINICAL IMPLICATIONS: These results demonstrate the importance of considering not only the phase of the stroke, the severity, and the general and specific HRQOL, but also the physical, social, and mainly the mental domain, which has long been neglected, when assessing this population.

The EORTC QLQ43 and FACT H&N questionnaires of quality of life at 1 and 5 years after treatment and dental care in head and neck cancer patients: a pilot study.

PURPOSE: This study aimed to examine health-related quality of life (HRQoL) in head and neck cancer patients at 1 and 5 years after successful treatment of their tumors, and to explore the usefulness of 2 instruments for assessing the need of dental care services. METHODS: This cross-sectional pilot study included 20 adult patients with head and neck cancer who completed the Functional Assessment of Cancer Therapy-Head and Neck (FACT H&N) Symptom Index and the European Organization for Research and Treatment of Cancer Quality of Life Head and Neck Module (EORTC QLQ-H&N43) after 1 and 5 years of treatment. RESULTS: Mean (standard deviation, SD) scores of the FACT H&N Symptom Index were higher (better HRQoL) at 5 years than at 1 year (24.1 [4.4] vs. 21.1 [6.4]; p = 0.236). Only three of the ten items of FACT H&N (swallow, pain in mouth/throat or neck, and solid foods) evaluated oral health. In the EORTC QLQ-H&N43 questionnaire, scores were lower at 5 years (better HRQoL) in almost all multi- and single-item symptoms. This questionnaire includes four multi-item scales (pain in the mouth, social eating, swallowing, and problems with teeth) measuring dental and orthodontic needs. CONCLUSION: HRQoL in patients with head and neck cancer improved with the length of follow-up. The EORTC QLQ-H&N43 has more items addressing oral health compared to the FACT H&N Symptom Index and may be more adequate to assess the need of dental therapy in clinical practice.

Acute clinical outcomes predict both generic and specific health-related quality of life six and 12 months after stroke: A one-year prospective study developed in a middle-income country.

OBJECTIVE: To identify acute predictors of generic and specific health-related quality of life (HRQoL) six and 12 months after stroke in individuals from a middle-income country. MATERIAL AND METHODS: This was a prospective study. The dependent outcomes assessed during six and 12 months after stroke included both generic and specific HRQoL (Short Form Health Survey-36 [SF-36] and stroke-specific quality of life [SSQOL]). The predictors were age, sex, education level, length of hospital stay, current living arrangement, stroke severity, functional independence, and motor impairment. RESULTS: 122 (59.9±14 years) and 103 (59.8±14.71 years) individuals were evaluated six and 12 months after stroke, respectively. Functional independence and sex were significant acute predictors of both generic and specific HRQoL. Functional independence was the strongest predictor (0.149≤R2≤0.262; 20.01≤F≤43.96, p<0.001), except for generic HRQoL at 12 months, where sex was the strongest predictor (R2=0.14; F=17.97, p<0.001). CONCLUSION: Generic and specific HRQoL in chronic individuals six and 12 months after stroke, from a middle-income country, can be predicted based on functional independence, the strongest predictor, assessed in the acute phase, except for generic HRQoL at 12 months. Functional independence can be modified by rehabilitation strategies and thus should be considered for HRQoL prognoses at chronic phase.

Oral Health-Related Quality of Life in a Paediatric Population in the Dominican Republic.

Introduction: During the summer of 2019 and within the framework of a social dentistry program carried out in the low-income town of San Francisco de Macorís (Dominican Republic), a descriptive study was carried out on oral health-related quality of life (OHRQoL), aiming to find out the oral health status of a population of children in the aforementioned Dominican city. Objective: The aim of this study was to describe the oral health status of a child population and its relationship with the quality of life perceived by these children in the aforementioned population of San Francisco de Macorís in order to develop an specific oral health program taking into account not only the existing oral health status but also the perceptions and feelings of the child population in this regard. Method: A descriptive cross-sectional study was carried out on a representative sample of children who were examined on their oral health status, following WHO guidelines, by professionals from the University of Seville (Spain) together with professionals from private practice (USA) and students from the Universidad Católica Nordestana (UCNE, Dominican Republic). Likewise, the children's parents voluntarily completed the Oral Quality of Life questionnaire COHIP-19 in its culturally adapted Spanish version. Results: For this purpose, 94 children with a mean age of 10.34 (SD 3.38) were observed in our study following WHO recommendations for oral health studies and evaluating OHQoL using the specific questionnaire validated in Spanish COHIP-19 in its short format (SF). The results show a state of oral health with a significant prevalence of caries (80.9%) and a DMFT of 1.70 (SD 1.90). The OHQoL perceived by these children shows that pain, bad breath or feeling sad because of the condition of their teeth were the factors with the worst evaluation score. Conclusions: The conclusion that mainly emerges from this study is that caries continues to be the main problem to be solved (more than other variables studied, such as malocclusion or fluorosis), and this ailment also causes pain, dysfunction, and bad breath and is therefore perceived as a problem to be solved in the children of this Dominican city.

Validación del cuestionario EORTC QLQ-CR29 para evaluación de la calidad de vida relacionada a la salud de personas adultas con cáncer colorrectal en Chile

Introducción: Personas con cáncer colorrectal (CCR) pueden presentar efectos adversos, perjudicando la calidad de vida relacionada a la salud (CVRS). Objetivo: Validar el módulo QLQ CR29 para evaluación de la CVRS, en Chile. Materiales y método: Estudio transversal que incluyó 170 personas con CCR. Se analizaron la consistencia interna y validez de constructo del instrumento con test de hipótesis. Resultados: 117 personas (68,8%) fueron evaluadas antes de la cirugía y 53 (31,2%) después de la cirugía. La consistencia interna del QLQ CR29 fue α = 0,838. Fueron comprobadas las hipótesis planteadas: Los pacientes evaluados antes de la cirugía se quejaron más de "sangre/mucosidad en las heces", "dolor abdominal", "pérdida de cabello" e "hinchazón abdominal", mientras que los pacientes evaluados después presentaron más "incontinencia fecal" (p < 0,05). Antes de la cirugía, los pacientes con cáncer de recto CCR presentaron mayores valores de "frecuencia urinaria", "frecuencia de deposiciones", "dolor en las nalgas", "problemas con el gusto" y "vergüenza"; mientras que aquellos con cáncer de colon que se quejaban más de "sangre/mucosidad en las heces" (p < 0,05). Después de la cirugía, los pacientes con cáncer de recto tenían mayor "frecuencia de deposiciones", "eliminación de gases" y "vergüenza" (p = 0,004) en comparación con los con cáncer de colon (p < 0,05). Los pacientes ostomizados presentaron más "incontinencia fecal" y "vergüenza" (p < 0,001). Fueron observadas correlaciones positivas y negativas bajas entre la mayoría de las dimensiones del QLQ CR29 con las dimensiones del QLQ C30. Conclusión: La versión chilena del módulo QLQ CR29 es adecuada para evaluar la CVRS en personas con CCR.

Introduction: People with colorectal cancer (CRC) can present adverse effects, impairing the quality of life related to health (HRQoL). Objective: To validate the QLQ-CR29 module for the assessment of HRQoL, in Chile. Materials and method: Cross-sectional study that included 170 people with CRC. The internal consistency and construct validity (hypothesis tests) were analyzed. Results: 117 patients (68.8%) were evaluated before surgery and 53 (31.2%) after tumor resection. The internal consistency of the QLQCR29 was α = 0.838. The proposed hypotheses were confirmed: The patients evaluated before surgery complained more of "blood/mucus in the stool", "abdominal pain", "hair loss" and "abdominal swelling", while the patients evaluated after presented more "fecal incontinence" (p < 0.05). Before surgery, patients with rectal cancer presented higher values of "urinary frequency", "frequency of stools", "pain in the buttocks", "taste problems" and "embarrassment"; while those with colon cancer complained more of "blood/mucus in stool" (p < 0.05). After surgery, patients with CCR had higher "stool frequency", "flatus" and "embarrassment" (p = 0.004) compared with those with colon cancer (p < 0.05). Ostomized patients presented more "fecal incontinence" and "embarrassment" (p < 0.001). Low significant correlations were observed between most of the dimensions of the QLQ CR29 with the dimensions of the QLQ C30. Conclusion: The Chilean version of the QLQ CR29 module is adequate to assess HRQoL in people with CRC.

Percepción parental de calidad de vida relacionada con salud oral en niños de 6 a 10 años

Introducción: La caries es una de las enfermedades crónicas que más afecta a la humanidad, los niños son un grupo de alto riesgo de presentarla. La Calidad de Vida Relacionada con Salud Oral (CVRSO) se refiere a la percepción de las condiciones bucales de uno mismo y la manera en que los factores afectados impactan el bienestar y desempeño en las actividades diarias, el desarrollo de indicadores de esta se ve limitado por el nivel cognitivo de los niños, lo que genera el P-CPQ para determinar la percepción parental. Objetivo: determinar la percepción parental de la calidad de vida relacionada con la salud bucal de los niños de 6 a 10 años. Materiales y Métodos: se realizó un estudio observacional descriptivo con componente analítico. Se llevó a cabo una encuesta a 98 padres, el P-CPQ modificado que consta de 23 preguntas que abarcan las subescalas de síntomas orales, limitaciones funcionales, bienestar emocional y bienestar social. Resultados: Relacionando los resultados del cuestionario con la presencia de caries en dientes permanentes se reportó el aumento de caries con la edad; el sexo femenino predominó entre los participantes con caries siendo el 63,8%. La puntuación media fue de 13,6 (DE=13,1). Se presentó una asociación estadísticamente significativa entre la percepción parental de CVRSO de los niños y la presencia de caries dental en dientes permanentes (p=0,004). Conclusiones: Se concluyó que la presencia de caries en dientes permanentes en niños de 6 a 10 años puede disminuir significativamente la CVRSO en las dimensiones de síntomas orales, limitaciones funcionales y bienestar social.

Introduction: Caries is one of the chronic diseases that most affects humanity; children are a high-risk group for developing it. Oral Health Related Quality of Life (OHRQL) refers to the perception of one's own oral conditions and the way in which the affected factors impact well-being and performance in daily activities. The development of indicators of this is limited by the cognitive level of the children, which led to the P-CPQ to determine parental perception. Objective: to determine the parental perception of the quality of life related to the oral health of children from 6 to 10 years old. Materials and Methods: This was a descriptive and observational study with an analytical component. A survey of 98 parents was conducted, using the modified P-CPQ which consists of 23 questions covering the subscales of oral symptoms, functional limitations, emotional well-being, and social well-being. Results: Relating the results of the questionnaire with the presence of cavities in permanent teeth, an increase in cavities with age was reported; the female sex predominated among the participants with cavities, being 63.8%. The mean score was 13.6 (SD=13.1). There was a statistically significant association between parental perception of children's OHRQL and the presence of dental caries in permanent teeth (p=0.004). Conclusions: The presence of caries in permanent teeth in children aged 6 to 10 years can significantly reduce OHRQLin the dimensions of oral symptoms, functional limitations and social well-being.

Improving Quality of Life and Psychosocial Health for Penile Cancer Survivors: A Narrative Review.

Treatment of penile cancer (PC) focuses on organ preservation, employing various surgical and non-surgical approaches. These interventions may lead to disfigurement, impacting patients' functional outcomes and psychosocial well-being. We reviewed studies related to penile health and PC up to February 2024, limited to studies published in English. Studies employing health-related quality of life (HRQoL) assessments have identified a detrimental association between aggressive treatment and overall health status, physical functioning, and relationships. In contrast, organ-sparing demonstrates improved measures related to HRQoL and sexual function. Assessment through validated questionnaires reveals diverse voiding outcomes, and varying impacts on QoL and sexual activity, emphasizing the necessity for multidisciplinary personalized care. Studies highlight substantial variations in sexual function, with patients reporting adaptations, reduced satisfaction, and concerns about body image and sexual well-being. Furthermore, unmet needs include challenges in patient-clinician communication, obtaining information, and accessing psychosocial support. Patient experiences underscore the importance of timely diagnosis, treatment access, and addressing psychological consequences. Organ-sparing approaches have higher QoL preservation and sexual function. Individualized support, including sexual therapy, support groups, and family counseling, is essential for post-treatment rehabilitation. Timely diagnosis and comprehensive care are paramount in addressing the multifaceted impact of PC on patients and families.

Patients' and Caregivers' Experiences Navigating the Burden of Atopic Dermatitis in Argentina.

Background and Objectives: Little is known about patients' and caregivers' experiences with atopic dermatitis (AD) in Argentina, so a survey was administered to learn more. Materials and Methods: A 53-item anonymous survey was administered in Spanish to adult AD patients (n = 334) and caregivers (n = 339) of pediatric AD patients in Argentina (total n = 673). Demographics, healthcare provider information, financial burden, disease severity, disease burden, level of disease-specific education, and experience with shared physician/patient decision making were collected. Linear and logistic regression models were used for statistical comparisons. Results: Survey respondents were overwhelmingly female (90.8%), as was the overall patient population (72.8%). Patients were seen mostly by healthcare specialists (66.8% dermatologists, 13.5% pediatricians, 7.7% allergists, and 7.2% general practitioners). Only 2.8% of respondents reported no symptoms, while 33.3%, 52.4%, and 11.5% reported mild, moderate, and severe AD disease, respectively. Anxiety/depression and pain/discomfort were the most impactful on respondents' quality of life. Caregivers of children with moderate to severe AD and adult patients with severe AD reported a significant financial burden, including using savings or not purchasing food or other essentials to afford medical care. Few people reported receiving disease-specific education or having their own treatment priorities taken into consideration. For adult patients, receiving disease education and being asked about treatment priorities were associated with higher treatment satisfaction and AD control. Discussion: Mental health, pain/discomfort, and financial worries are the most important burdens for adult AD patients and caregivers of children with AD in Argentina. We recommend prioritizing disease-specific education and shared decision making to improve AD care in Argentina.

Health-Related Quality of Life in Mexican Children and Adolescents with Non-Syndromic Craniosynostosis.

OBJECTIVE: Assess the Health-Related Quality of Life in children and adolescents with non-syndromic craniosynostosis and compare it with participants without craniosynostosis. DESIGN: Non-experimental, cross-sectional design. SETTING: The assessment was done remotely and the instrument was sent via chat or email. PATIENTS/PARTICIPANTS: Participants (ages 8-17) with non-syndromic craniosynostosis (n = 27) and without craniosynostosis (n = 26). MAIN OUTCOME MEASURE(S): We used an adapted version for the Mexican population of the Health-Related Quality of Life Questionnaire for Children and Adolescents -KIDSCREEN-52. RESULTS: All scores were in the average clinical range and both groups scored similarly in all domains except those with craniosynostosis were significantly lower in the Social Support and Peers domain (rpb = 0.48). CONCLUSIONS: Children and adolescents with non-syndromic craniosynostosis reported similar Health-Related Quality of Life as the control group, except for the Social Support domain, which should be investigated in future studies.

The impact of craniofacial and dental osteogenesis imperfecta manifestations on oral health-related quality of life of children and adolescents.

OBJECTIVE: Craniofacial and oral manifestations of Osteogenesis Imperfecta (OI) can affect the functioning of the stomatognathic system and impact the patient's quality of life. The objective of the study was to evaluate the relationship between craniofacial and oral manifestations and the Oral Health-related Quality of Life (OHRQoL) of OI children and adolescents. MATERIAL AND METHODS: A total of 30 OI patients aged eight to fourteen years old followed up at the Oral Care Center for Inherited Diseases were enrolled in the research. OHRQoL was assessed using the short form of the Child Perceptions Questionnaire (CPQ) for eight to ten-year-olds (CPQ8-10) and 11 to 14-year-olds (CPQ11-14). The relationship between the OHRQoL index and its assessment domains, OI types, and the presence of dentinogenesis imperfecta (DI), class III malocclusion, and dental agenesis were evaluated. RESULTS: The median CPQ score of patients was 5, and there was no significant difference in OHRQoL between children and adolescents, nor associated with the disease severity or the presence of DI. The oral manifestations evaluated did not directly impact the patients' OHRQoL. CONCLUSIONS: The study demonstrated that the perception of OHRQoL is similar for both adolescents and children. The oral symptom was the most relevant domain for the index among patients aged eight to fourteen years while the emotional well-being was the most impacted. CLINICAL RELEVANCE: this study makes contributions by indicating that addressing dental care for children and adolescents with OI is important in clinical management and better OHRQoL for this population.