UNASSIGNED: Thrombotic thrombocytopenic purpura (TTP) is an ultra-rare blood disorder, characterized by severe ADAMTS13 deficiency. Affected individuals present with potentially life-threatening acute events and may experience sub-acute and chronic TTP manifestations often resulting in long-term organ damage. Incremental symptom prevalence before, during, and after an acute event as well as healthcare resource utilization (HCRU) and costs during and after an acute event were compared between people with TTP and matched non-TTP controls.
UNASSIGNED: This retrospective, matched study used data from Merative™ MarketScan® Commercial Database and Medicare Supplemental Database (from January 1, 2008, through September 30, 2021) to identify people with TTP (inpatient diagnosis for \"thrombotic microangiopathy (TMA)\" or \"congenital TTP,\" and ≥1 claim for plasma exchange or infusion). People with TTP were matched (1:2) with non-TTP controls on age, sex, geographic region, index year, and select Elixhauser comorbidities.
UNASSIGNED: 255 people with TTP were matched with 510 non-TTP controls. Both cohorts had a mean age of 43.9 years; 71% were female. Overall, more people with TTP reported symptoms compared with non-TTP controls prior to (51% vs 43%), during (99% vs 52%), and after an acute event (85% vs 50%; p < 0.05 for all periods). Symptom prevalence decreased following an acute event compared with during an acute event, but remained high-85% of people with TTP experienced symptoms compared with 50% of non-TTP controls. HCRU and mean costs per patient per month were significantly higher in all care settings among people with TTP compared with non-TTP controls (p < 0.05).
UNASSIGNED: Identification of patient populations may have been limited due to coding errors, as the data were obtained from an administrative claims database.
UNASSIGNED: TTP is associated with a substantial symptom burden and increased costs and HCRU during and up to almost a year after acute events, demonstrating the longitudinal burden of this disease.

UNASSIGNED: This study compared disease burden, experiences, and health-related quality of life (HRQoL) between patients with Crohn\'s perianal fistulas (CPFs) and those with Crohn\'s disease (CD) without perianal fistulas (PFs; non-PF CD).
UNASSIGNED: This cross-sectional, observational study was conducted in 3 cohorts of US patients aged 18-89 years with self-reported, physician-diagnosed CD: (1) non-PF CD; (2) CPF without PF-related surgery; and (3) CPF with PF-related surgery. Data on medical and surgical interventions, CD-specific symptoms, HRQoL (assessed using the Short Inflammatory Bowel Disease and 5-dimension EuroQol questionnaires), and fecal incontinence (assessed using Revised Faecal Incontinence Scale and Fecal Incontinence Quality of Life questionnaires) were collected via a web-enabled questionnaire.
UNASSIGNED: In total, 403 patients with CD completed the questionnaire (non-PF CD, n = 300; CPF without surgery, n = 51; CPF with surgery, n = 52). A high symptom burden was seen across cohorts. More patients with CPF underwent ≥1 CD-related surgery and experienced ≥1 failure of CD-related surgery (79% and 20%) vs non-PF CD (53% and 9%; P < .001). Overall HRQoL outcomes were worse for patients with CPF vs non-PF CD, with significantly worse Short Inflammatory Bowel Disease and 5-dimension EuroQol questionnaire scores for those without PF-related surgery (P < .01). Across all cohorts, 58% of patients reported experiencing fecal incontinence, which had a greater negative impact (higher Revised Faecal Incontinence Scale scores; lower Fecal Incontinence Quality of Life scores) in patients with CPF vs non-PF CD.
UNASSIGNED: Patients with CPF experience substantial HRQoL burden, reflecting the impact of symptoms and medical/surgical interventions. These results may help to inform comprehensive care strategies to improve patient HRQoL.

Advanced gynecological cancer patients endure numerous symptoms resulting from both the disease itself and the treatments they undergo. This symptom burden significantly impacts the quality of life for both patients and their caregivers, as well as escalating medical costs. Palliative care presents a solution to alleviate these challenges. However, in Korea, there exists a low level of awareness regarding palliative care and consequently, a low utilization rate. Providing timely palliative care to advanced gynecological cancer patients in Korea necessitates a comprehensive understanding of their symptom burden, palliative care knowledge, and palliative care needs. However, no previous studies have addressed this critical issue. The purpose of this study is to determine the impact of advanced gynecological cancer on palliative care needs in Korea according to patient demographic and clinical characteristics, symptom burden, and palliative care knowledge. This study was a descriptive cross-sectional study of data from 115 participants with stage III or IV gynecological cancer, collected through an online questionnaire. The main variables were symptom burden (Functional Assessment of Cancer Therapy-General), palliative care knowledge (Palliative Care Knowledge Scale), and palliative care needs (Problems and Needs in Palliative Care questionnaire-short version). Multiple hierarchical regression analyses were used to determine the relationships between variables. Palliative care needs were divided into perceived problems and requests for professional support. The most common perceived problems were financial problems, psychological issues, and physical symptoms, and the most frequent requests for professional support were financial problems, psychological issues, and the need for information. The perceived problem score increased with age, not having surgical experience, and significant symptom burden. Additionally, the requests for professional support score rose in cases of ovarian cancer, not having surgical history, substantial symptom burden, and limited palliative care knowledge. Advanced gynecological cancer patients have palliative care needs that differ according to patient characteristics, symptom burden, and palliative care knowledge. Identifying factors influencing palliative care needs can aid clinicians in identifying target groups in need of palliative care and providing them with professional palliative care.

UNASSIGNED: Patients receiving renal dialysis often experience a wide range of symptoms. These symptoms contribute to a significant symptom burden that significantly affects patients\' quality of life and serves as a significant predictor of healthcare resource utilization and patient prognosis. It is necessary to synthesize existing evidence to draw reliable conclusions to deepen the understanding of symptom burden.
UNASSIGNED: A systematic review and meta-analysis were conducted to identify the relevant factors of symptom burden in patients receiving renal dialysis.
UNASSIGNED: The systematic review and meta-analysis was conducted by searching nine databases for studies reporting the correlates between symptom burden and demographic variables, disease factors, and psychosocial factors from inception to 24 June 2024. After two researchers independently conducted literature search, data extraction, and quality evaluation, meta-analysis was conducted using R Language and Stata 15.1 Software. This study has been registered in the PROSPERO.
UNASSIGNED: Sixty-two studies were included in this review. Results showed that the symptom burden of renal dialysis patients was positively correlated with age, gender, working status, medical cost, dialysis age, quality of sleep, nutritional status, comorbidities, depression, anxiety, disease uncertain, avoidance coping and resignation coping, and negatively correlated with marital status, income, serum sodium, quality of life, social support, subjective well-being, and self-management ability.
UNASSIGNED: Our findings reveal that many factors, including demographic, disease-related, and psychosocial variables, affect symptom burden. The results can supply information for health promotion and relief symptom burden for patients receiving renal dialysis.Registered number: CRD42024507577.

Background: Despite physical and emotional distress in patients with gynecologic malignancies, palliative care (PC) is underutilized. Objectives: We characterize referral practices, symptom burden and functional status at the time of initial PC encounter for patients with gynecologic cancer. Design: Data were extracted from the standardized Quality Data Collection Tool for Palliative Care (QDACT-PC). We describe symptom burden and performance status. Results: At initial specialty PC encounter, patients with gynecologic cancers reported a mean of 3.3 moderate/severe symptoms. Outpatients experienced the most moderate/severe symptoms (mean 3.9) versus inpatient (mean 2.1) or home (mean 1.5). A total of 72.7% of patients had significantly impaired functional status (palliative performance scale [PPS] <70) at initial encounter. Inpatients had a more impaired functional status (mean PPS 48.8) than outpatients (mean PPS 67.0). Conclusions: The symptom burden for gynecologic cancer patients at initial PC encounter is high. Despite better functional status, patients referred in the outpatient setting had the highest symptom burden.

暂无摘要。

BACKGROUND: Kidney failure at any age has a significant impact on quality of life (QoL) but the overall symptom burden for children and young people (CYP) is poorly described. Kidney failure has no cure and whilst transplantation is the preferred management option, it is not always possible, with patients requiring supportive care at the end of their lives.
OBJECTIVE: To use the literature to understand the symptom burden for CYP with kidney failure who are approaching end-of-life.
METHODS: Using three databases, a systematic literature review was performed to identify eligible studies to extract data on symptoms experienced in CYP aged < 21 years with kidney failure. Data extraction was completed by two authors using a pre-designed proforma. Study quality assessment was undertaken using the BMJ AXIS tool.
RESULTS: A total of 20,003 titles were screened to yielding 35 eligible studies including 2,862 CYP with chronic kidney disease (CKD), of whom 1,624 (57%) had CKD stage 5. The studies included a median of 30 (range 7-241) patients. Symptoms were subcategorised into eight groups: sleep, mental health, gastrointestinal, dermatology, ear, nose and throat (ENT), neurology, multiple symptoms, and ophthalmology. The prevalences of the most commonly reported symptoms were: restless leg syndrome 16.7-45%, sleep disordered breathing 20-46%, hypersomnia 14.3-60%, depression 12.5-67%, anxiety 5.3-34%, overall gastrointestinal symptoms 43-82.6%, nausea and vomiting 15.8-68.4%, abdominal pain 10.5-67.4%, altered appetite or anorexia 19-90%, xerosis 53.5-100%, pruritis 18.6-69%, headache 24-76.2% and ophthalmological symptoms 26%. Within each subgroup, the symptom definitions used were heterogeneous, the methods of assessment were varied and some symptoms, such as pain and constipation, were poorly represented.
CONCLUSIONS: There is a marked lack of evidence relating to the symptom burden for CYP with CKD. This study highlights the high symptom prevalence, particularly in relation to sleep, mental health, headache, dermatological and gastrointestinal symptoms. There is a need for consensus recommendations on the evaluation and management of symptoms for CYP with CKD approaching end-of-life.
UNASSIGNED: CRD42022346120.

UNASSIGNED: Elexacaftor/tezacaftor/ivacaftor (ETI) has reduced many symptoms of cystic fibrosis (CF).
UNASSIGNED: We sought to identify the impact of ETI on both symptoms and treatment decisions among adults with CF.
UNASSIGNED: Participants were enrolled in a cross-sectional study. Surveys were sent via a RedCap link. Semistructured interviews were administered remotely via Microsoft Teams. Interviews were audio recorded and professionally transcribed.
UNASSIGNED: We assessed Cystic Fibrosis Questionnaire-Revised (CFQ-R) subscales for physical, respiratory, emotion, and treatment, and analyzed semistructured interviews covering CF treatment regimens and daily living. Quantitative and qualitative results were analyzed separately and via a mixed-methods convergence coding matrix.
UNASSIGNED: Twenty-four adults with CF taking ETI were included. CFQ-R subscale scores (mean scores/standard deviation) were physical (82.1/22.8), respiratory (83.7/11.2), emotion (65.3/14.2), and treatment (57.5/20.1). Three themes about decision-making for non-ETI-treatments emerged: (1) How I\'m feeling, (2) Not noticing a difference, and (3) Uncertainty about long-term impact of modifying treatment regimens, and we found participants weighed each of these factors in their treatment decisions. Key findings from mixed-methods analysis show that among individuals experiencing higher CFQ-R scores for physical and respiratory compared to emotion and treatment, there were statements indicating that while those participants were experiencing better physical health, many continued their burdensome treatment regimens.
UNASSIGNED: With little long-term data on the impact of reducing non-ETI treatments, participants weighed how they were feeling, treatment efficacy beliefs, and risk tolerance when making treatment decisions.
The impact of Trikafta on CF health, health-related quality of life, and treatment adherence People with cystic fibrosis may be experiencing many health benefits from taking Trikafta, leading some people to cut back on or stop their other non-Trikafta treatments. We explored the impact of Trikafta on CF health, health-related quality of life, and treatment adherence for people with CF currently taking Trikafta. We compared health-related quality of life subscales from the CF Questionnaire-Revised questionnaire focused on physical symptoms, respiratory symptoms, treatment burden, and emotional well-being to assess whether people with CF were experiencing improved physical and respiratory health compared to emotional health and feelings of treatment burden. We found that many people were feeling better physically, but were still experiencing poor mental health and high treatment burden. We then looked at results from open-ended interviews to see if our qualitative data could explain the differences in the health-related quality of life scores. We found that while people were feeling better physically, many people were still continuing with the pre-Trikafta treatment regimens which may explain why physical health and respiratory health scores were higher than emotional well-being and treatment burden scores. At this time, we believe that more research is needed to guide treatment decisions related to cutting back or stopping burdensome treatment regimens.

Research indicates that patients with a lifetime history of suicide attempts are particularly burdened. However, investigations of their characteristics and comparisons with other patients are scarce. This study aimed to fill this research gap, using routine clinical data and guided by theoretical models. Data of N = 706 patients (54.4% women) was collected at the psychosomatic inpatient/day-clinic unit of a German university clinic. It comprised sociodemographic data and information about previous experiences (e.g., childhood abuse and neglect), symptom measures (e.g., the PHQ-9) and individual differences (e.g., the level of personality functioning assessed with the OPD-SQS). Groups were compared using independent t-tests or χ2-tests. Of the total sample, 118 patients (16.7%) reported suicide attempts. Those with a history of suicide attempts were more likely to have a migration background and a lower level of education, smoke (heavily) and use illegal substances. They reported lower levels of personality functioning, more current symptoms and traumatic previous experiences of abuse and neglect. Screening for previous suicidal behavior as well as associated factors can yield valuable information for clinical practice. Many group differences map onto previously observed specific risk factors for suicidal behavior, supporting the conceptual models and underscoring their relevance among clinical populations as well.

OBJECTIVE: The long-term effects of COVID-19 (Long COVID) include 19 symptoms ranging from mild to debilitating. We examined multidimensional correlates of Long COVID symptom burden.
METHODS: This study focused on participants who reported having had COVID in Spring 2023 (n = 656; 85% female, mean age = 55, 59% college). Participants were categorized into symptom-burden groups using Latent Profile Analysis of 19 Long-COVID symptoms. Measures included demographics; quality of life and well-being (QOL); and COVID-specific stressors. Bivariate and multivariate associations of symptom burden were examined.
RESULTS: A three-profile solution reflected low, medium, and high symptom burden, aligning with diagnosis confirmation and treatment by a healthcare provider. Higher symptom burden was associated with reporting more comorbidities; being unmarried, difficulty paying bills, being disabled from work, not having a college degree, younger age, higher body mass index, having had COVID multiple times, worse reported QOL, greater reported financial hardship and worry; maladaptive coping, and worse healthcare disruption, health/healthcare stress, racial-inequity stress, family-relationship problems, and social support. Multivariate modeling revealed that financial hardship, worry, risk-taking, comorbidities, health/healthcare stress, and younger age were risk factors for higher symptom burden, whereas social support and reducing substance use were protective factors.
CONCLUSIONS: Long-COVID symptom burden is associated with substantial, modifiable social and behavioral factors. Most notably, financial hardship was associated with more than three times the risk of high versus low Long-COVID symptom burden. These findings suggest the need for multi-pronged support in the absence of a cure, such as symptom palliation, telehealth, social services, and psychosocial support.