Nationwide epidemiological survey of juvenile idiopathic arthritis during transition to young adulthood in Japan using the National Database of Designated Incurable Diseases of Japan.

Objectives We aimed to assess the unmet medical needs of young adult patients with juvenile idiopathic arthritis by evaluating real-world treatment data. Methods We analyzed data on juvenile idiopathic arthritis in the 20-29 age group from the National Database of Designated Incurable Diseases of Japan, which records severe cases or those requiring high-cost medical care registered between April 2018 and March 2020. Results Overall, 322 patients with juvenile idiopathic arthritis transitioning to adulthood were included. A high frequency of methotrexate use was observed among all juvenile idiopathic arthritis subtypes. The frequency of methotrexate use at registration was significantly higher in patients with rheumatoid factor-positive polyarthritis and those with oligoarthritis or polyarthritis than in those with systemic arthritis. The historical use percentage of any biological disease-modifying antirheumatic drug was ≥85% for all juvenile idiopathic arthritis subtypes. The proportion of patients with ≥2 biological disease-modifying antirheumatic drug prescriptions was significantly higher in patients with rheumatoid factor-positive polyarthritis than in those with systemic arthritis. Conclusions High-cost drugs were necessary for many patients with juvenile idiopathic arthritis transitioning to young adulthood and registered in the database. Further studies on the medical interventions and support for these patients are needed.

Association of the muscle mass phenotype as assessed by a grading system with the quality of life of patients with incurable cancer in palliative care.

BACKGROUND: Loss of muscle mass (MM) is common in advanced stages of cancer, with an impact on worsening quality of life (QoL). In the current study the relationship of a previously proposed simple grade system to assess MM phenotypes with QoL was investigated to strengthen its clinical significance. AIM: To verify whether the MM phenotypes, which were evaluated by using a grading system, are associated with the quality of life (QoL) of patients with incurable cancer. METHODS: Secondary data from a cohort of patients with incurable cancer in palliative care were analyzed. The grade system considers measurements of the muscle area arm and handgrip strength. Based on these measurements, patients are classified as probably non-sarcopenic (NSarc), probably sarcopenic (PSarc), and sarcopenic (Sarc). The outcome measure was QoL domains assessed by the EORTC QoL Questionnaire Core-15. Logistic regression models were used to verify the association of the domains of QoL with the MM phenotypes. RESULTS: A total of 770 patients were included, median age of 62 years and 56.6% females. The PSarc group had significantly worse scores in the QoL domains when compared to the NSarc group (physical p = 0.001, emotional p = 0.018, fatigue p < 0.001, nausea p = 0.017, insomnia p = 0.001, appetite loss p = 0.002, and global health p = 0.043). Adjusted logistic regression analysis showed an increased risk of worse QoL in the PSarc and Sarc, when compared to NSarc, respectively (odds ratio [OR], 95% confidence interval [CI]): physical (OR: 2.54, CI: 1.78-3.62 and OR: 7.18, CI: 4.24-12.17), emotional (OR: 1.61, CI: 1.15-2.24 and OR: 1.49, CI: 1.01-2.20), fatigue (OR: 1.89, CI: 1.35-2.64 and OR: 1.83, CI: 1.23-2.71), insomnia (OR: 2.01, CI: 1.43-2.83 and OR: 3.11, CI: 2.04-4.75), while appetite loss domain was associated with the PSarc (OR: 1.40, CI: 1.02-1.96), together with global health in the Sarc group (OR: 1.56, CI: 1.06-2.29). CONCLUSION: The severity of the MM phenotype was associated with a worse QoL domains. Our results highlight the importance of MM preserving to affecting QoL status. The grading system can be useful for predicting the QoL in those patients, and its usefulness can potentially impact clinical and therapeutic decision-making.

Characteristics of timely integration of palliative care into oncology hospital care for patients with incurable cancer: results of a Delphi Study.

PURPOSE: To identify elements of timely integration of palliative care (PC) into hospital oncology care from best practices. Thereafter, to assess the level of consensus among oncology and PC specialists and patient and relative representatives on the characteristics of timely integration of PC. METHODS: A three-round modified Delphi study was conducted. The expert panel consisted of 83 healthcare professionals (HCPs) from 21 Dutch hospitals (43 physicians, 40 nurses), 6 patient and 2 relative representatives. In the first round, four elements of integrated PC were considered: (1) identification of potential PC needs, (2) advance care planning (ACP), (3) routine symptom monitoring and (4) involvement of the specialist palliative care team (SPCT). In subsequent rounds, the panellists assessed which characteristics were triggers for initiating an element. A priori consensus was set at ≥ 70%. RESULTS: A total of 71 (78%) panellists completed the first questionnaire, 65 (71%) the second and 49 (54%) the third. Panellists agreed that all patients with incurable cancer should have their PC needs assessed (97%), symptoms monitored (91%) and ACP initiated (86%). The SPCT should be involved at the patient's request (86%) or when patients suffer from increased symptom burden on multiple dimensions (76%). Patients with a life expectancy of less than 3 months should be offered a consultation (71%). CONCLUSION: The expert panel agreed that timely integration of PC into oncology is important for all patients with incurable cancer, using early identification, ACP and routine symptom monitoring. Involvement of the SPCT is particularly needed in patients with multidimensional symptom burden and in those nearing death.

Palliative care patients' attitudes and openness towards psilocybin-assisted psychotherapy for existential distress.

Introduction: Patients with incurable illnesses often experience existential distress, profoundly impacting their well-being. Current medical approaches have limitations in addressing these burdens. Psilocybin, a promising psychedelic compound, may offer therapeutic benefits. This pilot survey study aimed to investigate the attitudes and openness toward psilocybin-assisted psychotherapy (PAT) among patients with incurable illnesses. The objective is to assess patients' attitudes toward PAT and identify potential barriers and concerns, including exploring the association between beliefs in psilocybin's therapeutic benefits and interest in receiving this treatment. Methods: The survey study was conducted at the Tampa General Hospital Palliative Care Outpatient office in the United States. Participants were 32 English-fluent patients, aged 18 or older, with incurable illnesses. The survey included demographic questions, a validated tool to measure existential distress, and questions about knowledge and concerns regarding psilocybin. Attitudes toward PAT and interest in its future use were assessed using Likert scale responses. Results: Among the 31 analyzed participants, 51.6% expressed interest in future psilocybin treatment, while 32.3% did not indicate interest. Belief in the psilocybin's therapeutic benefits for stress and anxiety significantly correlated with interest in use. Concerns included risk of psychosis, lack of trained providers, and potential for exploitation. No demographic factors were associated with interest or levels of distress. Conclusions: This pilot study provides insights into the attitudes and concerns toward PAT among patients with incurable illnesses. Over half of participants expressed interest. However, concerns regarding its use were identified, with patients' concern for the risk of exploitation associated with PAT as an especially novel concern documented in this patient population. This highlighted the need for further education of risks and benefits or PAT by trained clinicians and rigorous training of clinicians with the establishment of safeguards against exploitation. Further research is necessary to explore the potential benefits of PAT and related non-psilocybin psychedelic compounds in addressing existential distress among patients with incurable illnesses.

Carboplatin in Patients With Metastatic Castration-Resistant Prostate Cancer Harboring Somatic or Germline Homologous Recombination Repair Gene Mutations: Phase II Single-Arm Trial.

BACKGROUND: Approximately 20%-25% of patients with metastatic castration-resistant prostate cancer (mCRPC) harbor a deleterious germline or somatic mutation in the homologous recombination repair (HRR) pathway genes, which is involved in the repair of double-stranded DNA damage. Half of these mutations are germline, while the remaining are exclusively somatic. While polyadenosine 5'diphosphoribose [poly (ADP-ribose)] polymerase inhibitors, such as olaparib and rucaparib, are effective in this subgroup, their widespread use is limited due to the associated high cost, especially in resource-constrained settings. Notably, platinum agents like carboplatin have exquisite sensitivity to cells with defective DNA repair machinery. Carboplatin, a conventional, inexpensive chemotherapeutic agent, offers a potential alternative treatment in such patients. Several retrospective small case series support this hypothesis. However, there are no prospective clinical trials of carboplatin in patients with mCRPC with HRR mutations. OBJECTIVE: The primary objective is to assess the objective response rate of 3 weekly carboplatin treatments in patients with mCRPC harboring deleterious mutations in the HRR pathway genes and previously treated with a taxane or a novel antiandrogen agent. The secondary objectives include progression-free survival, health-related quality of life, and safety profile of carboplatin. METHODS: Patients diagnosed with mCRPC harboring HRR pathway mutations previously treated with docetaxel or novel antiandrogen agents (abiraterone, enzalutamide, apalutamide, or darolutamide) or both will be eligible. Genes involved directly or indirectly in the HRR pathway will be tested. In this single-arm phase II study, we will screen approximately 200 patients to enroll 49 patients, and carboplatin (dosing at the area under curve=5) will be administered every 3 weeks until progression or intolerable side effects. The primary end point will be assessed as the proportion of patients with a reduction of serum prostate-specific antigen by more than 50% from enrollment. Secondary outcomes include progression-free survival-soft-tissue disease progression (by response evaluation criteria in solid tumors, version 1.1, and bone lesion progression using Prostate Cancer Clinical Trials Working Group 3 criteria), health-related quality of life during carboplatin treatment using the Functional Assessment of Cancer Therapy-Prostate questionnaire and the European Organisation for Research and Treatment of Cancer questionnaire and safety profile of carboplatin (National Cancer Institute's Common Terminology Criteria for Adverse Events version 5.0). RESULTS: The trial started enrollment in September 2023. This trial is ongoing, and 12 patients have been recruited to date. All 49 participants will be enrolled according to plan. CONCLUSIONS: This prospective phase II trial represents a critical step toward addressing the therapeutic gap in patients with mCRPC harboring HRR pathway mutations, particularly in demographic regions with limited access to poly (ADP-ribose) polymerase inhibitors. Outcomes from this study will inform clinical practice and guide future phase III randomized trials, ultimately improving patient outcomes globally. TRIAL REGISTRATION: Clinical Trials Registry of India CTRI/2023/04/051507; https://ctri.nic.in/Clinicaltrials/pmaindet2.php?EncHid=Njc0NjU=&Enc=&userName=. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/54086.

The mental health and well-being implications of a mesothelioma diagnosis: A mixed methods study.

PURPOSE: Mesothelioma is an incurable, asbestos-related cancer with a poor prognosis. There is scant evidence about the mental health and well-being impacts on patients and carers living with the illness. This study aimed to investigate mesothelioma's impact on mental health and well-being and the scale of mental health conditions in patients and informal carers. METHODS: A mixed-methods design was used: a cross-sectional survey of mesothelioma patients and informal carers plus semi-structured interviews with patients and carers. The survey used validated scales collecting data on mental health aspects of mesothelioma: the EQ5D to assess health-related quality-of-life; the Hospital Anxiety and Depression scale; the PCL-5 to assess Posttraumatic Stress; and the Posttraumatic Growth Inventory. The datasets were integrated during analysis. RESULTS: 96 useable survey responses were received. A clinical level of depression was reported by 29 participants (30.21%), of anxiety by 48 (50%), of posttraumatic distress disorder by 32 (33.33%), and of posttraumatic growth by 34 (35.42%). Carers had worse scores than patients. Three main themes were developed from interviews with 10 patients and 11 carers: 'Prognosis', 'Support from services', and 'Social connections and communication'. CONCLUSIONS: Healthcare professionals delivering a mesothelioma diagnosis require regular training in communication skills plus updating in current treatment options, so they provide an appropriate mix of realism and hope. Better signposting to mental health support is needed for patients and carers. Our introduction of posttraumatic growth into the mesothelioma literature is novel. We recommend specialist nurses are trained to recognise, understand, and foster posttraumatic growth.

Burden, Depression and Quality of Life in Carers of Newly Diagnosed Advanced Cancer Patients in Egypt.

CONTEXT: The goal of palliative care (PC) is to improve the quality of life (QoL) of patients with life-limiting illnesses as well as their families. Ideally, PC is integrated early in the course of life-limiting illnesses. Less attention has been paid to the need for early PC for family caregivers (FCs) in lower-income settings. OBJECTIVES: This observational cross-sectional study was conducted to explore the burden experienced by FCs of newly diagnosed incurable cancer patients in Egypt and characterize its relation to depression and QoL. METHODS: Ninety-five adult FCs of adult patients with newly diagnosed incurable cancer completed the 22-item Zarit Burden Interview (ZBI-22), Patient Health Questionnaire (PHQ-9), and Short Form 12 (SF-12) to assess caregiving burden, depression, and QoL among FCs, respectively. RESULTS: The median (IQR) ZBI-22 score was 17(11-24) and 34% of FCs had significant burden (ZBI-22 score > 20). Assistance with late loss activities of daily living and availability for longer caregiving duration were associated significantly with higher caregiving burdens (P = 0.004 and 0.047, respectively). FCs with significant burden had significantly higher PHQ-9 scores (P = 0.0003). There was a significant negative correlation between ZBI-22 scores and the bodily pain, general health, mental health, physical function, role emotional, and social function subscales/items of SF-12. CONCLUSIONS: A substantial proportion of Egyptian FCs of incurable cancer patients experience significant burden early in the course of the disease. This burden is associated with depressive symptoms and worse QoL dimensions, physical, psychological, and social. In a lower-income setting, early PC interventions for FCs of incurable cancer patients are needed.

Patients' perception of the benefits of palliative systemic therapy for advanced cancer.

BACKGROUND: Patients with advanced cancer who misunderstand their prognosis and chance of cure tend to overestimate the likely benefits of palliative systemic therapy. AIM: To determine patient perceptions of palliative systemic therapy benefits in advanced cancer. METHODS: We surveyed 104 outpatients with advanced cancer receiving systemic anticancer therapy and their treating oncologists. Patients recorded their understanding of treatment impact on chance of cure and symptoms. Life expectancy was estimated by patients and oncologists. A visual analogue scale (0-10) was used to record how patients and oncologists valued quality of life (QOL) and length of life (LOL) (<4 QOL most important; 4-7 QOL and LOL equal; >7 LOL most important). Patient-oncologist discordance was defined as a ≥4-point difference. RESULTS: The main reasons patients selected for receiving treatment were to live longer (54%) and cure their cancer (36%). Most patients reported treatment was very/somewhat likely to prolong life (84%) and improve symptoms (76%), whereas 20% reported treatment was very/somewhat likely to cure their cancer. 42% of patients selected a timeframe for life expectancy (choice of four timeframes between <1 year and ≥5 years); of these, 62% selected a longer timeframe than their oncologist. When making treatment decisions, 71% of patients (52% of oncologists) valued QOL and LOL equally. Patient-oncologist discordance was 21%, mostly because of oncologists valuing QOL more than their patients (70%). CONCLUSION: At least 20% of patients receiving systemic therapy for advanced cancer reported an expectation of cure. Most patients and oncologists value QOL and LOL equally when making treatment decisions.

Validation of the Bengali version of the Caregiver Collusion Questionnaire: A tool for measuring collusion among caregivers of terminally ill patients.

Background: In palliative care settings, collusion or "conspiracy of silence" frequently interferes with communication and interpersonal relationships among patients, caregivers, and healthcare professionals. The "Caregiver Collusion Questionnaire" is the only tool available for assessing caregiver collusion. The purpose of the study is to translate and adapt the English version of this instrument into Bengali, followed by standard validation. Methods: The study was carried out in two stages. Four independent translators conducted forward and backward translations of the English version of the "Caregiver Collusion Questionnaire" into Bengali. The Bengali version of the instrument was finalized following expert committee reviews, pre-testing, and cognitive debriefing. The final validation was carried out among 71 caregivers of patients with advanced incurable illnesses admitted to the palliative medicine and internal medicine departments of two Bangladeshi hospitals. In the final phase, the validity (content, face, and construct validity) and reliability (interclass item-wise correlation coefficient) of the translated tool were assessed. Result: 60% of the participants fully understood 19 items, whereas 40% struggled with one or more items. The expert committee expressed their satisfaction with the face and content validity of the translated version. The Bengali version also had quite good reliability (α = 0.62). Seven components were identified using principal component analysis with the distribution of Varimax Rotation distribution. Items under each factor had adequate factor loading, ranging from 0.4 to 0.8. Conclusion: The Bengali version of the "Caregiver Collusion Questionnaire" was found valid reliable and culturally acceptable for measuring caregiver collusion among the Bengali-speaking people. Based on the scale, the reasons for collusion can be identified and measures can be taken for breaking the collusion.

Proposal of a nutrition screening algorithm for patients with incurable cancer receiving palliative care: Data from a prospective cohort.

OBJECTIVE: To propose and evaluate the clinical utility of a new nutrition screening algorithm, NutriPal, to detect the degree of nutritional risk in patients with incurable cancer receiving palliative care. METHODS: It is a prospective cohort conducted in an oncology palliative care unit. The NutriPal algorithm was used in a three-step process: (i) administration of the Patient-Generated Subjective Global Assessment short form; (ii) calculation of the Glasgow Prognostic Score; and (iii) application of the algorithm to classify patients into four degrees of nutritional risk. The higher the degrees of NutriPal, the worse the nutritional risk, comparing nutritional measures, laboratory data, and overall survival (OS). RESULTS: The study included 451 patients that were classified using the NutriPal. They were allocated to the degrees: 1 (31.26%), 2 (27.49%), 3 (21.73%), and 4 (19.71%). Statistically significant differences were found in most of the nutritional and laboratory parameters and in OS with each increment in the NutriPal degrees, and OS was reduced (log-rank <0.001). In addition, NutriPal was able to predict a 120-day mortality: there was a significantly higher risk of death in the patients classified as degrees 4 (hazard ratio [HR], 3.03; 95% confidence interval [95% CI], 2.18-4.19), 3 (HR, 2.01; 95% CI, 1.46-2.78), and 2 (HR, 1.42; 95% CI; 1.04-1.95) than in those classified as degree 1. It also showed good predictive accuracy (concordance statistic, 0.76). CONCLUSION: The NutriPal is associated to nutritional and laboratory parameters and can predict survival. It could therefore be incorporated into clinical practice for patients with incurable cancer receiving palliative care.

Rotationplasty type BIIIb as an effective alternative to limb salvage procedure in adults: Two case reports.

BACKGROUND: Rotationplasty is often performed for malignant tumors, but type BIIIb rotationplasty is rarely reported, and there needs to be more evidence of the procedure and treatment. The purpose of this case study was to report a new direction in the use of type BIIIb rotationplasty in treating patients with limb salvage and long-term non-healing infections. CASE SUMMARY: Case 1: A 47-year-old man underwent radiotherapy for hemangioendothelioma in his left thigh, resulting in a femoral fracture. Despite the use of plates, intramedullary nailing, and external fixators, the femoral bone failed to unite due to infectious nonunion. Multiple operations were unable to control the infection, leaving the patient immobile. We performed a modified tibia-pelvic-constrained hip rotationplasty, utilizing a constrained prosthetic hip between the tibia and pelvis following a femur resection. Two years post-surgery, the patient was able to walk with the prosthetic device without any signs of recurring infection. The corresponding functional scores were 72 points for the Musculoskeletal Tumor Society (MSTS), 53 for the Functional Mobility Assessment (FMA), 93 for the Toronto Extremity Salvage Score (TESS), and 56 for the MOS 36-item short form health survey (SF-36). Case 2: A 59-year-old woman presented with liposarcoma in her left thigh. Magnetic resonance imaging revealed tumors in the medial, anterior, and posterior femur muscles, encircling the femoral vessels and nerves. Fortunately, there were no symptoms of sciatic dysfunction, and the tumor had not invaded the sciatic nucleus. After one year of follow-up, the patient expressed satisfaction with limb preservation post-type BIIIb rotationplasty. The corresponding functional scores were 63 points for the MSTS, 47 for the FMA, 88 for the TESS, and 52 for the SF-36. CONCLUSION: Our study suggests that type BIIIb rotationplasty may be an alternative to amputation in patients with incurable infections. For malignant tumors of the lower extremities without invasion of the sciatic nerve, type BIIIb rotationplasty remains an excellent alternative to amputation. This surgical method may prevent amputation, improve functional outcomes, and facilitate biological reconstruction.

Validation of Bengali version of Edmonton Symptom Assessment Scale-Revised (ESAS-r Bengali): A multidimensional symptom assessment tool for patients with advanced incurable diseases receiving palliative care.

Objective: Routine symptom assessment represents the cornerstone of symptom management of patients with advanced incurable diseases in palliative care. At present, there is no validated tool to assess symptoms among the Bengali-speaking population with incurable diseases. The aim of the study is to translate, culturally adapt, and validate the Edmonton Symptom Assessment Scale (Revised) into Bengali language. Methods: The study was conducted in two phases. Forward and backward translations of the English version of the Edmonton Symptom Assessment Scale (Revised) into Bengali were conducted by four independent translators. After obtaining reviews from an expert committee, pre-testing and cognitive debriefing the Bengali version of the tool was finalized. The final validation was conducted among 110 patients admitted to the Palliative Medicine Department of Bangabandhu Sheikh Mujib Medical University, Dhaka, Bangladesh. Validity (content, face, and construct validity) and reliability (internal consistency) were assessed in the final validation phase. Result: All participants responded to all items. Seventy percent of the participants completely understood all questions but 30% had difficulty with three questions. The expert committee expressed their satisfaction regarding the face and content validity of the questionnaire. The Bengali version also had high reliability (α = 0.862). Principal component analysis with the distribution of varimax rotation of Edmonton Symptom Assessment Scale (Revised) Bengali ranged from 0.41 to 0.83. Conclusion: After the translation and cross-cultural adaptation, the Bengali version of the Edmonton Symptom Assessment Scale (Revised) achieved good levels of validity and reliability. It can be used as a symptom assessment tool for Bengali speaking population receiving palliative care.

The Next Best Thing: Three Key Conversations to Convey Prognosis Over the Course of an Incurable Cancer.

INTRODUCTION: Waiting until a person is very near end of life to discuss limited life expectancy risks lower goal-concordant care and increased utilization of medical interventions with lower likelihood of benefit at the end of life. Medical training on communication skills in serious illness often focuses on early and late conversations regarding prognosis, with no guidance on navigating the conversations occurring in the middle of the illness course. GOAL OF THE REVIEW: We propose a new framework for identifying and discussing prognosis at various points along the cancer course, as a continuum from beginning to end, that is prompted by changes in clinical status and number of available remaining cancer directed interventions. DISCUSSION: SPIKES is a framework utilized for early conversations in a cancer course. REMAP is a framework utilization for late conversations in a cancer course. There is a gap in guidance on how to navigate conversations that occur between the early and late phases of a cancer course. We describe 3 general phases of care during a cancer course ("early," "middle," and "late"), with each phase warranting specific communication skills in order to improve patient understanding of prognosis, goal concordant care, and best practices for healthcare utilization in the acute and end of life care settings. CONCLUSION: Framing prognosis by available medical interventions through a framework of "early," "middle," and "late" adds clarity to the phase of illness, expectations around delivery of information to the patient, and framing of recommendations at each given phase.

Integrated Short-term Palliative Rehabilitation to improve quality of life and equitable care access in incurable cancer (INSPIRE): a multinational European research project.

Background: Disability related to incurable cancer affects over a million Europeans each year and people with cancer rank loss of function among the most common unmet supportive care needs. Objectives: To test the clinical and cost-effectiveness of an integrated short-term palliative rehabilitation intervention, to optimise function and quality of life in people affected by incurable cancer. Design: This is a multinational, parallel group, randomised, controlled, assessor blind, superiority trial. Methods: The INSPIRE consortium brings together leaders in palliative care, oncology and rehabilitation from partner organisations across Europe, with complementary expertise in health service research, trials of complex interventions, mixed-method evaluations, statistics and economics. Partnership with leading European civil society organisations ensures citizen engagement and dissemination at the highest level. We will conduct a multinational randomised controlled trial across five European countries, recruiting participants to assess the effectiveness of palliative rehabilitation for people with incurable cancer on the primary outcome - quality of life - and secondary outcomes including disability, symptom burden and goal attainment. To support trial conduct and enhance analysis of trial data, we will also conduct: comparative analysis of current integration of rehabilitation across oncology and palliative care services; mixed-method evaluations of equity and inclusivity, processes and implementation for the intervention, at patient, health service and health system levels. Finally, we will conduct an evidence synthesis, incorporating INSPIRE findings, and a Delphi consensus to develop an international framework for palliative rehabilitation practice and policy, incorporating indicators, core interventions, outcomes and integration methods. Scientific contribution: If positive, the trial could produce a scalable and equitable intervention to improve function and quality of life in people with incurable cancer and reduce the burden of care for their families. It could also upskill the practitioners involved and motivate future research questions. The intervention could be adapted and integrated into different health systems using existing staff and services, with little or no additional cost.

Clinical usefulness of the Patient-Generated Subjective Global Assessment and modified Glasgow Prognostic Score in decision making concerning the indication of enteral nutritional therapy in patients with incurable cancer receiving palliative care.

OBJECTIVES: This study aimed to identify the clinical usefulness of assessing nutritional status using validated tools for the indication of enteral nutrition for patients with incurable cancer in palliative care. METHODS: In this prospective cohort study, patients were assessed for nutritional risk using the Patient-Generated Subjective Global Assessment and for cancer cachexia (CC) using the modified Glasgow Prognostic Score upon enrollment and after ∼30 d. The outcome was stable or improved Karnofsky Performance Status. Logistic regression models were used, providing the odds ratio (OR) and 95% confidence interval (CI). RESULTS: A total of 180 patients participated. The only nutritional status parameter that was associated with function was CC. The less severe the CC, the more likely Karnofsky Performance Status was to remain stable or improve over 30 d (non-cachectic: OR = 1.95; 95% CI, 1.01-3.47; malnourished: OR = 1.06; 95% CI, 1.01-1.42). Furthermore, white skin color (OR = 1.79; 95% CI, 1.04-2.47), higher educational level (OR = 1.39; 95% CI, 1.13-2.78), and inadequate calorie intake (OR = 1.96; 95% CI, 1.02-2.81) were also associated with the outcome. CONCLUSIONS: Using the modified Glasgow Prognostic Score to identify the existence and severity of CC, which is associated with function, has the potential to help clinical decision making concerning the indication of enteral nutrition in patients with incurable cancer receiving palliative care.

Motor imagery brain-computer interface rehabilitation system enhances upper limb performance and improves brain activity in stroke patients: A clinical study.

This study compared the efficacy of Motor Imagery brain-computer interface (MI-BCI) combined with physiotherapy and physiotherapy alone in ischemic stroke before and after rehabilitation training. We wanted to explore whether the rehabilitation effect of MI-BCI is affected by the severity of the patient's condition and whether MI-BCI was effective for all patients. Forty hospitalized patients with ischemic stroke with motor deficits participated in this study. The patients were divided into MI and control groups. Functional assessments were performed before and after rehabilitation training. The Fugl-Meyer Assessment (FMA) was used as the primary outcome measure, and its shoulder and elbow scores and wrist scores served as secondary outcome measures. The motor assessment scale (MAS) was used to assess motor function recovery. We used non-contrast CT (NCCT) to investigate the influence of different types of middle cerebral artery high-density signs on the prognosis of ischemic stroke. Brain topographic maps can directly reflect the neural activity of the brain, so we used them to detect changes in brain function and brain topological power response after stroke. Compared the MI group and control group after rehabilitation training, better functional outcome was observed after MI-BCI rehabilitation, including a significantly higher probability of achieving a relevant increase in the Total FMA scores (MI = 16.70 ± 12.79, control = 5.34 ± 10.48), FMA shoulder and elbow scores (MI = 12.56 ± 6.37, control = 2.45 ± 7.91), FMA wrist scores (MI = 11.01 ± 3.48, control = 3.36 ± 5.79), the MAS scores (MI = 3.62 ± 2.48, control = 1.85 ± 2.89), the NCCT (MI = 21.94 ± 2.37, control = 17.86 ± 3.55). The findings demonstrate that MI-BCI rehabilitation training could more effectively improve motor function after upper limb motor dysfunction after stroke compared with routine rehabilitation training, which verifies the feasibility of active induction of neural rehabilitation. The severity of the patient's condition may affect the rehabilitation effect of the MI-BCI system.

Profiling of kidney involvement in systemic lupus erythematosus by deep learning using the National Database of Designated Incurable Diseases of Japan.

BACKGROUND: Kidney involvement frequently occurs in systemic lupus erythematosus (SLE), and its clinical manifestations are complicated. We profiled kidney involvement in SLE patients using deep learning based on data from the National Database of Designated Incurable Diseases of Japan. METHODS: We analyzed the cross-sectional data of 1655 patients with SLE whose Personal Clinical Records were newly registered between 2015 and 2017. We trained an artificial neural network using clinical data, and the extracted characteristics were evaluated using an autoencoder. We tested the difference of population proportions to analyze the correlation between the presence or absence of kidney involvement and that of other clinical manifestations. RESULTS: Data of patients with SLE were compressed in a feature space in which the anti-double-stranded deoxyribonucleic acid (anti-dsDNA) antibody titer, antinuclear antibody titer, or white blood cell count contributed significantly to distinguishing patients. Many SLE manifestations were accompanied by kidney involvement, whereas in a subgroup of patients with high anti-dsDNA antibody titers and low antinuclear antibody titers, kidney involvement was positively and negatively correlated with hemolytic anemia and inflammatory manifestations, respectively. CONCLUSION: Although there are various combinations of SLE manifestations, our study revealed that some of them are specific to kidney involvement. SLE profiles extracted from the objective analysis will be useful for categorizing SLE manifestations.

Incurable Blindness: The Final Frontier in Vision Restoration.

Blindness with no light perception is clinically irreversible. This cross-sectional hospital-based study analyzed patients presenting with no light perception in at least one eye. Between 2010 and 2022, 60,668 (1.85%) such patients were identified, of which 3,476 (5.73%) had bilateral and 57,192 (94.27%) had unilateral blindness. The major causes were glaucoma (21.8%), trauma (17.7%), phthisis bulbi (13.1%), retinal diseases (10.6%), anophthalmos (7.8%), and optic atrophy (4.9%). The majority of the affected individuals were adults (89.9%) and male (64%), and affected individuals were more likely to be from the lower socio-economic strata (3.14%) and from a rural location (1.99%). Despite recent therapeutic advances in ophthalmology, many patients with blindness cannot be restored to sight. Although preventive measures can mitigate sight loss to some extent, regenerative therapies, retinal and ciliary body transplantation, and whole eyeball transplantation need to be developed as sight restorative procedures to help those who currently have no hope of regaining vision.

'I am still valuable' - A qualitative study of incurable cancer patients coping in hospice care.

BACKGROUND: Knowledge of the experiences of coping in patients with incurable cancer is essential for high-quality palliative and end-of-life care. AIM AND OBJECTIVE: To describe the coping experiences of patients with incurable cancer in hospice care to better develop patient-centred care. METHODS: The data for this qualitative study were collected through semi structured interviews, with patients with incurable cancer in hospice care (N = 20) and analysed with inductive content analysis. Ethical and organisational approvals were obtained, and the participants received both verbal and written information before consenting to participate. RESULTS: The patients' coping was enhanced with their involvement in treatment-related decisions. Valuing day-to-day living and coping with emotional stressors helped them accept their own life situations. Accepting their increasing fragility was enhanced by their self-reappraisal. The patients found security in the possibility of receiving support when they needed it. Although the ordinariness of dying in hospice care settings was sometimes too much to bear, they understood dying to be a part of the natural cycle of life. They questioned the responsiveness of healthcare services because they felt that they were not always heard. STUDY LIMITATIONS: Because this study was limited to a specific population of cancer patients in hospice care, the results might not be generalised to other patient groups with chronic diseases or other palliative care settings. CONCLUSIONS: The experiences of patients in hospice care of coping with incurable cancer were reminiscent of the common coping process descriptions. Surprisingly, even though participants voiced that they had accepted their situation, dying itself was something they did not find crucial to discuss. The crucial aspects - without being in denial - dealt more with focusing on positive thinking and facing life.