BACKGROUND: Dementia caregiving is a dynamic and multidimensional process. To gain a comprehensive understanding of informal caregiving for people living with dementia (PLWD), it is pivotal to assess the quality of life (QoL) of informal caregivers.
OBJECTIVE: To evaluate whether the care-recipient relationship type predicts changes in the QoL of informal caregivers of PLWD over a two-year period.
METHODS: This was a secondary analysis of longitudinal data. The data were drawn from two waves of linked data from the National Health and Aging Trends Study (NHATS) and the National Study of Caregiving (NSOC) (2015: NHATS R5 & NSOC II; 2017: NHATS R7 & NSOC III). Caregivers were categorized into spousal, adult-child, \"other\" caregiver and \"multiple\" caregivers. QoL was assessed through negative emotional burden (NEB), positive emotional benefits and social strain (SS). Generalized estimating equation modelling was used to examine changes in caregivers\' QoL outcomes across types of relationship over time.
RESULTS: About, 882 caregivers were included who linked to 601 PLWD. After adjusting caregivers\' socio-demographics, \"other\" caregivers had lower risk of NEB and SS than spousal caregivers (OR = 0.34, P = 0.003, 95%CI [0.17, 0.70]; OR = 0.37, P = 0.019, 95%CI 0.16, 0.85], respectively), and PLWD\'s dementia status would not change these significance (OR = 0.33, P = 0.003, 95%CI [0.16, 0.68]; OR = 0.31, P = 0.005, 95%CI [0.14, 0.71], respectively).
CONCLUSIONS: The study demonstrates that spousal caregivers face a higher risk of NEB and SS over time, underscoring the pressing need to offer accessible and effective support for informal caregivers of PLWD, especially those caring for their spouses.

BACKGROUND: Erythropoietic protoporphyria (EPP) and X-linked protoporphyria (XLP) are rare disorders of heme biosynthesis characterized by severe cutaneous phototoxicity. Afamelanotide, an α-melanocyte-stimulating hormone analogue, is the only approved treatment for protoporphyria and leads to increased light tolerance and improved quality of life (QoL). However, published experience with afamelanotide in the US is limited.
METHODS: Here, we report on all adults who received at least one dose of afamelanotide at the Massachusetts General Hospital Porphyria Center from 2021 to 2022. Changes in the time to phototoxic symptom onset, QoL, and laboratory parameters were assessed before and during treatment with afamelanotide.
RESULTS: A total of 29 patients with protoporphyria were included, 26 of whom (72.2%) received ≥2 afamelanotide implants. Among the patients who received ≥2 implants, the median time to symptom onset following sunlight exposure was 12.5 min (IQR, 5-20) prior to the initiation of afamelanotide and 120 min (IQR, 60-240) after treatment (p < 0.001). Improvements in QoL during afamelanotide treatment were measured using two QoL tools, with good correlation observed between these two instruments. Finally, we found no improvements in the median levels of metal-free erythrocyte protoporphyrin, plasma protoporphyrin, or liver biochemistries during versus prior to the initiation of afamelanotide treatment.
CONCLUSIONS: This study highlights a dramatic clinical benefit of afamelanotide in relation to light tolerance and QoL in protoporphyria, albeit without improvement in protoporphyrin levels or measures of liver function.

OBJECTIVE: Sexual distress impacts the quality of life (QoL) of breast cancer patients but is often overlooked in standard care pathways. This study evaluated the prevalence and factors of sexual distress among Dutch breast cancer patients, compared them to the general population, and explored how sexual distress is discussed in clinical settings from the perspectives of patients and healthcare professionals (HCPs).
METHODS: Questionnaires containing the Female Sexual Distress Scale (FSDS) and demographic variables were distributed to women with breast cancer. The effect of breast cancer on sexual distress was assessed with a Mann-Whitney U test. Multivariable linear regression was used to analyze variables associated with FSDS. The Sexuality Attitudes and Beliefs Survey (SABS) was sent to HCPs.
RESULTS: Breast cancer patients reported significantly higher sexual distress compared to a Dutch non-breast cancer cohort, respectively 16.38 (SD 11.81) and 23.35 (SD 11.39). Factors associated with higher sexual distress were psychological comorbidities, the body image scale, and being diagnosed >10 years ago. Sexual distress was not discussed as often as patients needed. Barriers to addressing sexual distress were time constraints, HCPs\' confidence in their ability to address sexual distress, and uncertainty about who is responsible for initiation.
CONCLUSIONS: Breast cancer patients showed significantly higher sexual distress compared to the Dutch population. However, it was not frequently addressed in the consultation room. While some barriers have been identified, this study highlights the importance of further exploring obstacles to integrating discussions about sexual distress into routine care to improve QoL of breast cancer patients.

BACKGROUND: While music-based therapy (MBT) has been shown to improve motor and non-motor features in multiple sclerosis (MS), benefits of tango have never been assessed.
OBJECTIVE: To evaluate the benefits of tango classes on quality of life (QoL), mood, fatigue, gait, balance, perception of cognitive disorder and sexuality in people with MS.
METHODS: 7 participants (age 41.14 ± 14.27 years, disease duration 14.14 ± 7.6 years) and respective partners undertook one-hour weekly classes for 20 weeks. Participants had early-stage MS (EDSS<3.5). They were assessed for mood (ZUNG rating scale; Beck Depression Inventory -II); balance (Berg Balance Test; Tinetti scale), cognition (MS Neuropsychological Screening Questionnaire), SD (Multiple Sclerosis Intimacy and Sexuality Questionnaire), fatigue (Fatigue Severity Scale) and QoL (36-Item Short Form Survey).
RESULTS: Group comparison of pre-post change scores showed a general improvement in all the outcome measures, which was significant in mood, SD, cognition and QoL.
CONCLUSIONS: Tango classes provides benefits to pwMS, especially on non-motor symptoms. Follow-up assessment is required to confirm the durability of these effects.

Bone metastases are a common and debilitating consequence of advanced cancer, often necessitating palliative radiation therapy (RT) for pain relief. Reirradiation (reRT) of bone metastases is often considered after lack of pain relief following an initial course of RT, after a partial but unsatisfying pain response to an initial course of radiotherapy, or after pain recurrence following a complete or partial pain response to an initial course of RT. The NCIC CTG SC.20 trial, a landmark multicenter, randomized, non-blinded, controlled non-inferiority trial, addressed the critical question of optimal dose fractionation for reRT in this patient population. This trial compared the efficacy and toxicity of a single 8 Gy fraction to multiple fractions totaling 20 Gy in 850 patients with painful bone metastases requiring reRT. The primary endpoint was overall pain response at 2 months, with secondary endpoints of quality of life (QoL) measures, functional interference, and toxicity profiles assessed using patient-reported questionnaires and the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30. The intention-to-treat analysis revealed no significant difference in pain response between the two arms, meeting the pre-specified non-inferiority criteria. The per-protocol analysis suggested a potential benefit for a subset of patients receiving multiple fractions, although this was not statistically robust. Acute toxicities were more prevalent in the multiple fractions arm, with implications for patient comfort and healthcare utilization. Importantly, responders to reRT reported significant improvements in functional interference and QoL. The trial\'s findings support the use of a patient-centric approach to palliative RT, highlighting the viability of a single 8 Gy fraction as a less toxic and more convenient treatment option, albeit with consideration for individual patient circumstances. These results have significant implications for clinical practice, potentially reducing healthcare burdens while optimizing patient convenience during palliative care for painful bone metastases.

Background Studies evaluating the quality of life (QoL) among oral cancer patients in the Indian population are scarce. Regular follow-ups and QoL assessment in oral squamous cell carcinoma (OSCC) patients can aid in comprehensive support strategies to improve their QoL outcomes. Aim and objectives This study aimed to assess the QoL of oral cancer patients and correlate the QoL with demographic and treatment parameters.  Materials and methods The study included oral cancer patients who had previously reported to the Department of Oral and Maxillofacial Surgery. QoL assessment was done using the EORTC QLQ-C30 and QLQ-HN43 questionnaires before and after treatment. The clinico-demographic details, treatment data, follow-up data, and recorded mean QoL were procured from the patient records in Dental Information Archival Software. Assessment of QoL was done before treatment and at intervals of one month, three months, six months, 12 months, 24 months, and 36 months postoperatively after treatment. Statistical analysis was performed using IBM SPSS Statistics for Windows, Version 23 (released 2015; IBM Corp., Armonk, New York, United States). A repeated measures analysis of variance (ANOVA) was utilized for comparing the average QoL scores and frequency of follow-ups across various intervals. Chi-square tests assessed differences in mean QoL among genders, across different sites, and between primary closure and graft placement. The significance was set at a p-value of less than 0.05. Results A total of 90 OSCC patients had reported to the department. A preoperative assessment of QoL was done for 90 (100%) patients. Out of these patients, surgery has been performed on 41 (45%). Twenty-five out of 41 (60%) patients had responded to regular follow-up, and QoL was assessed for these patients. After the immediate postoperative phase, only 12 (48%) had reported after three months. Only six (24%) had a 12-month follow-up, five (20%) had a two-year follow-up, and one (4%) had a three-year follow-up. There was a constant decrease in the number of follow-ups after the treatment of OSCC (p=0.00). Prior to treatment, the mean QoL index was 4.64. Females had a slightly higher preoperative QoL of 4.76 compared to males, with a score of 4.67 (p=0.157). Immediately after the treatment of OSCC, a decline in QoL scores was noted, with a mean score of 4.25 (p=0.32). Patients who underwent primary closure after excision had a mean post-op QoL score of 4.9, while patients who underwent graft placement had a mean score of 4.6 (p=0.157). Conclusion This study highlights the enduring impact of oral cancer on a patient\'s quality of life and emphasizes the need for ongoing research to explore specific interventions that can contribute to sustained improvement in QoL. It emphasizes personalized, holistic care approaches for such patients.

BACKGROUND: Vision has a key role in children\'s neuromotor, cognitive and social development. Children with visual impairment attain developmental milestones at later stages and are at higher risk of developing psychological disorders and social withdrawn.
OBJECTIVE: We performed a scoping review to summarize the mostly used instruments assessing the impact of visual impairment on quality of life, functioning and participation of children and adolescents. In addition, the main findings of the included studies are discussed.
METHODS: We searched for papers assessing quality of life, functioning and participation of children and adolescents with visual impairment from 0 to 18 years old conducted between 2000 and 2023.
RESULTS: In total, 69 studies met the inclusion criteria and were included in the review. Child self-report, caregivers-proxy and self-report questionnaires as well as interviews were used. The results showed that quality of life, functioning and participation are significantly reduced in children and adolescents with visual impairment, and that the impact depends on different factors (e.g., severity of the impairment, age).
CONCLUSIONS: Considering the significant impact of visual impairment on quality of life, functioning and participation on this population, it is fundamental to develop integrated and multi-dimensional assessment programs that evaluate the impact of visual impairment on those dimensions considering different contexts of life (e.g., family, school, leisure time). WHAT THIS PAPER ADDS?: The present review aims to give an overview of what is known about the impact of visual impairment on quality of life, functioning and participation of children and adolescents. We assumed a biopsychosocial perspective which, in line with the definition of health by the International Classification of Functioning, Disability and Health (WHO, 2001), considered how body functions and structures, functioning, participation and environmental factors dynamically interact to define the health, or the disease, status of a person at a certain moment of life. We reported the most used instruments for the assessment of quality of life, participation, and functioning, with a specific interest on Patient-Reported Outcome Measures and self-report measures. By reporting the different instruments used, we gave a broad overview about the available tools that can be used in clinical as well as in research field to assess quality of life, functioning and participation in this population. Additionally, the review of the existing literature allowed us to demonstrate that those dimensions are negatively impacted by visual impairment and thus they should be considered in the assessment programs. Specifically, there is the need to provide more integrated assessment programs that investigate the impact of visual impairment on children and adolescents\' social and emotional wellbeing, everyday functioning and social relationship, considering their subjective experience together with the one of caregivers, teachers, health care professionals, and other relevant adults involved in their life. Additionally, it is essential to plan and implement multidimensional assessment programs that consider how all areas of life are differently impacted by visual impairment.

Background Pelvic fractures caused by high-energy trauma, such as motor vehicle accidents or falls from a considerable height, commonly lead to sacral fractures. Approximately a quarter of sacral fractures are linked to neurological injury, and overlooking these fractures may result in neurological issues such as sexual dysfunction, hindered lower limb functionality, and urinary and rectal difficulties. The main goal of this study is to introduce our patient group who underwent either operative or nonoperative treatment for sacral fractures, with a follow-up period of one year, and assess their functional outcomes. Methodology This is a retrospective review of prospectively collected data from a consecutive series of patients at the Apex Trauma Centre, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow. A consecutive series of 24 patients (17-55 years old) with sacral fractures treated either operatively or nonoperatively from 2018 to 2023 was studied. A total of 20 patients were available for follow-up questionnaires, and 20 patients participated in a physical examination. Time to final follow-up averaged 27.19 months (range = 12-57 months). The personal data of each patient was collected, including gender, age, comorbidities, concomitant injuries, mechanism of injury, fracture pattern/classification, surgical or nonsurgical treatment, other surgeries, length of surgery, length of hospital stays, adverse events, complications, neurologic and/or motor deficits, bowel and bladder function, and mortality. At a minimum one-year follow-up, the Majeed score, Oswestry Disability Index (ODI) questionnaire, and Gibbon\'s classification were assessed. Results All fractures were healed. Five patients showed neurological weakness, with three patients having only paresthesia and two patients having lower limb weakness. The mean Majeed score was 75.4, representing a moderate clinical outcome. Final ODI scores averaged 10.6, representing mild disability among patients with sacrum fractures. Overall, 40% of sacrum fractures were associated with sexual dysfunction, with 30% of females and 50% of males reporting this issue. There was no significant difference (p > 0.05) between operated and conservatively managed sacrum fractures concerning ODI scores, neurological deficit, and sexual dysfunction. Conclusions Both male and female patients with traumatic sacrum fractures experienced a significant decrease in their quality of life and sexual function at least 12 months after their surgery. Sacrum fractures are associated with an increased prevalence of sexual dysfunction and bowel/bladder incontinence. Our study findings indicate that patients with sacrum fractures experience similar functional outcomes and incidences of sexual dysfunction irrespective of whether they are managed operatively or conservatively.

Introduction Dental caries prevention in early childhood is crucial, necessitating timely assessments by dental professionals and parents. The oral health of children during their early years can significantly impact both the children themselves and their parents\' quality of life. This study seeks to assess the changes in oral health-related quality of life after treatment under nitrous oxide sedation in anxious preschool children, for whom treatment otherwise is quite difficult chairside. Aim The aim of this study is to assess the association between dental caries status, risk assessment, and oral health-related quality of life (OHRQoL) in 3-6-year-old children, before and after undergoing treatment under nitrous oxide inhalation sedation. Materials and methods Eighty children were assessed for caries risk and dental status using the caries risk assessment for treatment (CRAFT) tool. Nitrous oxide sedation was employed for dental treatment, and assessments were conducted pre-treatment and post-treatment. Statistical analyses performed were paired t-tests, correlation analyses, and Chi-Square tests. Results The study revealed a mean age of 4.033 ± 0.96, with a balanced gender distribution (47.5% boys, 52.5% girls). Post-treatment, significant negative correlations were observed between OHRQoL and treatment outcomes, emphasizing improved oral health-related quality of life. Associations were found between OHRQoL, pufa index, and caries risk post-treatment. Conclusion The current research suggests that treatment done under nitrous oxide sedation could improve the OHRQoL in preschool children. Integrating risk assessment and OHRQoL enhances understanding, facilitating targeted prevention and treatment strategies. Addressing untreated dental caries is imperative for optimizing the overall well-being of children in this age group.

UNASSIGNED: The quality of life (QOL) of patients with chronic obstructive pulmonary disease (COPD) is garnering increasing attention. However, faced with thousands of relevant clinical literature, it is becoming increasingly difficult for researchers and institutions to identify impactful research. Bibliometrics can help researchers quickly and methodically analyze the impact and hot trends of clinical research, strengthen teamwork, and solve related challenges. Therefore, we used bibliometrics to analyze and visualize data on the QOL of patients with COPD over the past 31 years to understand the key authors, research areas, and future trends.
UNASSIGNED: We searched the Web of Science Core Collection for literature published since the establishment of the database. The main subject terms used were \"chronic obstructive pulmonary disease\", \"quality of life\" and their different combinations. Articles were selected and exported in plain text format along with citation information. Bibliometric analysis and data visualization were performed using the R package \"bibliometrix\" and by incorporating statistical indicators such as the number of publications, citations and outputs of core authors, author collaborations, major journals, major research countries and collaborations, and key research themes.
UNASSIGNED: The bibliometric analysis included 9,219 articles. Document type is unlimited. All publications were published between 1992 and 2022, and the number of published articles increased consistently each year over the past decade, with periodic fluctuations. The European Respiratory Journal and the International Journal of Chronic Obstructive Pulmonary Disease emerged as the most frequently cited journals within this domain. Key authors contributing to this field include Wedzicha JA, Jones PW, Singh D, Holland AE, and Wouters EFM. The United States and the United Kingdom exhibited a high volume of publications, high citation rates, and relatively intense international collaboration in related areas, followed by China, Spain, Canada, and Australia in these metrics. Notably, prominent topics within this field included emphysema, pulmonary rehabilitation, dyspnea, acute exacerbation, living status, and mortality, among others. Future research in this field will focus on microorganisms, particulate matter, family rehabilitation, and Tai Chi.
UNASSIGNED: This bibliometric analysis highlights the growing importance of QOL research in the field of COPD, which can inform clinicians, researchers, and policymakers to prioritize areas for future investigation in order to develop comprehensive, patient-centered strategies. At the same time, it is suggested that researchers should pay more attention to the core authors, strengthen international collaboration and team exchanges, actively explore characteristic clinical featured treatment measures such as Tai Chi and family rehabilitation, carry out clinical research on the integration of traditional Chinese and Western medicine and self-management, focus more on the QOL, mental health and economic and social burden of patients, and ultimately enhance the well-being of individuals with chronic respiratory diseases.