OBJECTIVE: Anxiety and depression are highly prevalent and impactful in epilepsy. American Academy of Neurology quality measures emphasize anxiety and depression screening and quality of life (QOL) measurement, yet usual epilepsy care QOL and anxiety/depression outcomes are poorly characterized. The main objective was to assess 6-month QOL, anxiety and depression during routine care among adults with epilepsy and baseline anxiety or depression symptoms; these were prespecified secondary outcomes within a pragmatic randomized trial of remote assessment methods.
METHODS: Adults with anxiety or depression symptoms and no suicidal ideation were recruited from a tertiary epilepsy clinic via an electronic health record (EHR)-embedded process. Participants were randomized 1:1 to 6 month outcome collection via patient portal EHR questionnaires vs. telephone interview. This report focuses on an a priori secondary outcomes of the overall trial, focused on patient-reported health outcomes in the full sample. Quality of life, (primary health outcome), anxiety, and depression measures were collected at 3 and 6 months (Quality of Life in Epilepsy-10, QOLIE-10, Generalized Anxiety Disorder-7, Neurological Disorders Depression Inventory-Epilepsy). Change values and 95 % confidence intervals were calculated. In post-hoc exploratory analyses, patient-reported anxiety/depression management plans at baseline clinic visit and healthcare utilization were compared with EHR-documentation, and agreement was calculated using the kappa statistic.
RESULTS: Overall, 30 participants (15 per group) were recruited and analyzed, of mean age 42.5 years, with 60 % women. Mean 6-month change in QOLIE-10 overall was 2.0(95 % CI -6.8, 10.9), and there were no significant differences in outcomes between the EHR and telephone groups. Mean anxiety and depression scores were stable across follow-up (all 95 % CI included zero). Outcomes were similar regardless of whether an anxiety or depression action plan was documented. During the baseline interview, most participants with clinic visit EHR documentation indicating action to address anxiety and/or depression reported not being offered a treatment(7 of 12 with action plan, 58 %), and there was poor agreement between patient report and EHR documentation (kappa=0.22). Healthcare utilization was high: 40 % had at least one hospitalization or emergency/urgent care visit reported and/or identified via EHR, but a third (4/12) failed to self-report an EHR-identified hospitalization/urgent visit.
CONCLUSIONS: Over 6 months of usual care among adults with epilepsy and anxiety or depression symptoms, there was no significant average improvement in quality of life or anxiety/depression, suggesting a need for interventions to enhance routine neurology care and achieve quality of life improvement for this group.

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OBJECTIVE: People with low socioeconomic status are disproportionately affected by kidney failure, and their adverse outcomes may stem from unmet health-related social needs. This study explored hemodialysis patient perspectives on health-related social needs and recommendations for intervention.
METHODS: Qualitative study using semistructured interviews.
METHODS: Thirty-two people with low socioeconomic status receiving hemodialysis at 3 hemodialysis facilities in Austin, Texas.
METHODS: Interviews were analyzed for themes and subthemes using the constant comparative method.
RESULTS: Seven themes and 21 subthemes (in parentheses) were identified: (1) kidney failure was unexpected (never thought it would happen to me; do not understand dialysis); (2) providers fail patients (doctors did not act; doctors do not care); (3) dialysis is detrimental (life is not the same; dialysis is all you do; dialysis causes emotional distress; dialysis makes you feel sick); (4) powerlessness (dependent on others; cannot do anything about my situation); (5) financial resource strain (dialysis makes you poor and keeps you poor; disability checks are not enough; food programs exist but are inconsistent; eat whatever food is available; not enough affordable housing; unstable housing affects health and well-being); (6) motivation to keep going (faith, support system, will to live); and (7) interventions should promote self-efficacy (navigation of community resources, support groups).
CONCLUSIONS: Limited quantitative data such as on dialysis vintage, and limited geographic representation.
CONCLUSIONS: Dialysis exacerbates financial resource strain, and health-related social needs exacerbate dialysis-related stress. The participants made recommendations to address social needs with an emphasis on increasing support and community resources for this population.
UNASSIGNED: People receiving dialysis often experience health-related social needs, such as food and housing needs, but little is known about how these impact patients\' health and well-being or how to best address them. We interviewed people receiving dialysis about how health-related social needs affect them and what they think dialysis facilities can do to help them address those needs. The participants reported that they often lose their independence after starting dialysis and health-related social needs are common, exacerbate their stress and emotional distress, and reduce their sense of well-being. Dialysis facilities may be able to enhance the experience of these patients by facilitating connections with local resources and providing opportunities for patients to support one another.

Patient perspectives on functioning are often overlooked in oncology practice. This study externally validates the ELderly Functional Index (ELFI), a patient-reported measure for assessing multidimensional functioning, in older patients with gastrointestinal cancer receiving chemotherapy. The study compares ELFI scoring methods, evaluates its diagnostic value with geriatric oncology tools, and proposes a cut-off point for clinical use.
Danish patients aged ≥70 years with gastrointestinal cancer undergoing chemotherapy from a prospective, observational study were included. Two ELFI scoring methods, item-based and domain-based, were compared. Internal consistency reliability, validity, and correlations between ELFI, its component scales, and measures of functioning/frailty (including Eastern Cooperative Oncology Group Performance Status [ECOG-PS], Geriatric-8 [G8], Vulnerable Elders Survey-13 [VES-13], Timed-Up-and-Go [TUG], and 30-s chair stand test [30CST]) were investigated. Sensitivity and specificity analyses evaluated the ability of ELFI to predict frailty outcomes and identified frailty thresholds. Receiver operating characteristic analyses assessed the diagnostic ability of ELFI, alongside other measures, for oncological outcomes and frailty differentiation. Equipercentile equating methods enabled ECOG-PS, ELFI, and G8 mapping.
One hundred fifty-four patients (median age 73.5 years, range 70-85) undergoing curative- or palliative-intent chemotherapy (49%) were included. ELFI demonstrated good internal consistency (Cronbach\'s alpha = 0.82) and acceptable convergent, structural, and discriminant validity. ELFI showed moderate to very strong correlations with its component scales (r = 0.40-0.93), and weaker correlations with frailty measures (r = 0.02-0.60). ELFI score < 80 indicated frailty risk, with almost fivefold risk of ECOG-PS 2 at follow-up (odds ratio[OR] = 4.8, 95% confidence interval [CI] 1.4-15.9), and predicted G8, VES-13, TUG, and 30CST frailty at follow-up, not completing planned chemotherapy (OR = 3.1; 95%CI 1.5-6.2), mono-therapy (OR = 3.5; 95%CI 1.5-8.1), initial dose reduction (OR = 4.9; 95%CI 2.0-12.1), and shorter overall survival (hazard ratio = 2.0, 95%CI 1.4-3.0). A preliminary crosswalk between ECOG-PS, ELFI, and G8 was established.
ELFI was validated as a concise patient-reported measure of functional status in older patients with cancer and its relationship to frailty. ELFI demonstrated comparable predictive ability to other tools for oncological outcomes. Both scoring methods yielded similar results, with the domain-based method (ELFI v2.0) endorsed for consistency. ELFI v2.0 score of 80 was suggested as the frailty threshold in this population, supporting its clinical utility.

Early identification of patients at risk for malnutrition followed by individualized nutrition interventions is a central step to the provision of appropriate nutrition care. However, a health care professional (HCP)-based nutrition screening is not always consistently integrated into routine care. Patient-reported (PR) nutrition screening could thus potentially alleviate the burden on the HCPs and contribute to a greater number of patients who are identified and treated for malnutrition.
In 2021 a Quality Improvement Project (QIP) at our out-patient oncology clinic was undertaken to implement the change from a HCP-based nutrition screening to a PR-screening. This was followed by a retrospective analysis in which the primary outcome measure was the rate of nutrition consultations initiated for patients undergoing cancer therapy.
In total n = 1657 patient data sets derived from comparable time periods before and after the QIP were analyzed and compared. Both groups had a comparable mean age and gender distribution. The most common diagnosis in both groups was gastrointestinal tumors. The change in routine care from a HCP-based nutrition screening to a PR-screening led to a significant increase in nutrition consultation rates (RD = 19%; p < 0.001; 95% CI 14.4%-23.5%) and screening rates (RD = 30.5%; p < 0.001; 95% CI 26.2%-34.7%).
The change to PR-screening potentially facilitates an increase in nutrition screening rates. This in turn leads to an increased rate of patients identified at risk for malnutrition and thus referrals for nutrition consultations. Our findings indicate that a PR nutrition screening tool could play a role in closing the care gap and contribute to reducing rates of malnutrition among this population where screening is not consistently integrated into routine care.

BACKGROUND: Wilson disease (WD) is a genetic disorder of copper metabolism that leads to copper accumulation in various organs, primarily the liver and brain, resulting in heterogenous hepatic, neurologic, and psychiatric symptoms. Diagnosis can occur at any age, requiring lifelong treatment, which can involve liver transplantation. This qualitative study aims to understand the wider patient and physician experience of the diagnosis and management of WD in the US.
METHODS: Primary data were collected from 1:1 semi structured interviews with US-based patients and physicians and thematically analyzed with NVivo.
RESULTS: Twelve WD patients and 7 specialist WD physicians (hepatologists and neurologists) were interviewed. Analysis of the interviews revealed 18 themes, which were organized into 5 overarching categories: (1) Diagnosis journey, (2) Multidisciplinary approach, (3) Medication, (4) The role of insurance, and (5) Education, awareness, and support. Patients who presented with psychiatric or neurological symptoms reported longer diagnostic journeys (range 1 to 16 years) than those presenting with hepatic symptoms or through genetic screening (range 2 weeks to 3 years). All were also affected by geographical proximity to WD specialists and access to comprehensive insurance. Exploratory testing was often burdensome for patients, but receipt of a definitive diagnosis led to relief for some. Physicians emphasized the importance of multidisciplinary teams beyond hepatology, neurology, and psychiatry and recommended a combination of chelation, zinc, and a low-copper diet; however, only half the patients in this sample were on a chelator, and some struggled to access prescription zinc due to insurance issues. Caregivers often advocated for and supported adolescents with their medication and dietary regimen. Patients and physicians recommended more education and awareness for the healthcare community.
CONCLUSIONS: WD requires the coordination of care and medication among several specialists due to its complex nature, but many patients do not have access to multiple specialties due to geographical or insurance barriers. Because some patients cannot be treated in Centers of Excellence, easy access to reliable and up-to-date information is important to empower physicians, patients, and their caregivers in managing the condition, along with general community outreach programs.

BACKGROUND: Drug-related problems can negatively influence treatment outcome and well-being for patients with rheumatic diseases. Thus, it is important to support patients in preventing or resolving drug-related problems as quickly as possible. To effectively develop interventions for this purpose, knowledge on the frequency and character of drug-related problems is needed. Therefore, this study aims to quantify and characterize drug-related problems reported by patients with inflammatory rheumatic diseases along their treatment process.
METHODS: A prospective observational study was conducted in a Dutch outpatient pharmacy. Adult patients with rheumatic diseases that were prescribed medication by a rheumatologist were questioned about experienced DRPs by telephone 4 times in 8 weeks using a structured interview-guide. Patient-reported DRPs were scored on uniqueness (i.e., if a specific DRP was reported in multiple interviews by one individual, this was counted as one unique DRP) and were categorized using a classification for patient-reported DRPs and analysed descriptively.
RESULTS: In total, 52 participants (median age 68 years (interquartile range (IQR) 62-74), 52% male) completed 192 interviews with 45 (87%) participants completing all 4 interviews. The majority of patients (65%) were diagnosed with rheumatoid arthritis. Patients reported a median number of 3 (IQR 2-5) unique DRPs during interview 1. In subsequent interviews, patients reported median numbers of 1 (IQR 0-2), 1 (IQR 0-2) and 0 (IQR 0-1) unique DRPs for interviews 2-4 respectively. Participants reported a median number of 5 (IQR 3-9) unique DRPs over all completed interviews. Unique patient-reported DRPs were most frequently categorized into (suspected) side effects (28%), medication management (e.g., medication administering or adherence) (26%), medication concerns (e.g., concerns regarding long-term side-effects or effectiveness) (19%) and medication effectiveness (17%).
CONCLUSIONS: Patients with rheumatic diseases report various unique DRPs with intervals as short as two weeks. These patients might therefore benefit from more continuous support in-between contact moments with their healthcare provider.

People with early-onset colorectal cancer, under the age of 50, are more likely to experience diagnostic delay and to be diagnosed at later stages of the disease than older people. Advanced stage diagnosis potentially requires invasive therapeutic management at a time of life when these patients are establishing intimate relationships, raising families, building careers and laying foundations for financial stability. Barriers to timely diagnosis at primary care level have been identified but the patient perspective has not been investigated.
Personal accounts of cancer care are increasingly accessed as rich sources of patient experience data. This study uses mixed methods, incorporating quantitative content analysis and qualitative thematic analysis, to investigate patients\' accounts of early-onset colorectal cancer diagnosis published on prominent bowel cancer support websites in the United Kingdom, Australia and New Zealand.
Patients\' perceptions (n = 273) of diagnostic barriers at primary care level were thematically similar across the three countries. Patients perceived that GPs\' low suspicion of cancer due to age under 50 contributed to delays. Patients reported that their GPs seemed unaware of early-onset colorectal cancer and that they were not offered screening for colorectal cancer even when \'red flag\' symptoms were present. Patients described experiences of inadequate information continuity within GP practices and across primary, specialist and tertiary levels of care, which they perceived contributed to diagnostic delay. Patients also reported tensions with GPs over the patient-centredness of care, describing discord related to symptom seriousness and lack of shared decision-making.
Wider dissemination of information about early-onset colorectal cancer at primary care level is imperative given the increasing incidence of the disease, the frequency of diagnostic delay, the rates of late-stage diagnosis and the dissatisfaction with patient experience reported by patients whose diagnosis is delayed. Patient education about diagnostic protocols may help to pre-empt or resolve tensions between GPs\' enactment of value-based care and patients\' concerns about cancer. The challenges of diagnosing early-onset colorectal cancer are significant and will become more pressing for GPs, who will usually be the first point of access to a health system for this growing patient population.

BACKGROUND: No phase 3 studies have yet been conducted for patients with non-clear cell (CC) renal cell carcinoma (RCC) exclusively due to the rare occurrence of the disease and the heterogenicity in tumor morphology. Consequently, there is no evidence of the optimal treatment, and new approaches are needed. One approach is individualizing treatment based on the gene sequencing of tumor tissue. Additionally, recent studies involving the patient-reported outcomes (PROs) of patients treated for metastatic cancer have shown significant benefits for quality of life, median overall survival, and overall survival. The use of gene sequencing and PROs can be of great importance to patients with rare cancer types, including patients with non-CC RCC, and should be investigated in clinical trials, especially for cases where evidence based on phase 3 studies is difficult to obtain.
OBJECTIVE: We describe the INDIGO study, in which patients, based on gene analyses, will be allocated into 4 treatment arms containing 14 treatments and use electronic PROs. We aim to improve the treatment of patients with non-CC RCC. The end points in the study will be the overall response rate (complete and partial) in the total patient population, which will be based on the RECIST (Response Evaluation Criteria in Solid Tumors) version 1.1 criteria, and the time to treatment failure.
METHODS: INDIGO is a prospective phase 2 trial, and 30 patients will be enrolled. The patients will receive systemic treatment based on genetic analyses of their tumor tissue. All patients will receive electronic questionnaires in a dedicated app-a questionnaire regarding symptoms and side effects and another regarding health-related quality of life. Depending on the treatment regimen, the patients will be seen by a medical doctor every third, fourth, or sixth week, and the effect of the systemic treatment will be evaluated every 6 weeks via a computed tomography scan. The study has been approved by the Danish Medicines Agency and the National Committee on Health Research Ethics (approval number: H-19041833), complies with good clinical practice guidelines, follows the General Data Protection Regulation, and is registered at the Capital Region of Denmark.
RESULTS: Recruitment started in March 2020, and at the time of submitting this paper (June 2022), a total of 9 patients have been enrolled.
CONCLUSIONS: We aim to explore methods for improving the treatment outcomes of patients with non-CC RCC, and the INDIGO study will contribute further data on personalized medicine for rare types of RCC and provide new knowledge on the active use of electronic PROs.
BACKGROUND: ClinicalTrials.gov NCT04644432, https://clinicaltrials.gov/ct2/show/NCT04644432 ; European Union Drug Regulating Authorities Clinical Trials Database 2019-001316-38, https://tinyurl.com/2p8mb4aw.
UNASSIGNED: DERR1-10.2196/36632.

Health care utilization after coronary artery bypass graft (CABG) surgery is high and is partly of an unplanned nature. eHealth applications have been proposed to reduce care consumption, which involve and assist patients in their recovery. In this way, health care expenses could be reduced and quality of care could be improved.
The aim of this study was to evaluate if an eHealth program can reduce unplanned health care utilization and improve mental and physical health in the first 6 weeks after CABG surgery.
A single-blind randomized controlled trial was performed, in which patients scheduled for nonacute CABG surgery were included from a single center in the Netherlands between February 2020 and October 2021. Participants in the intervention group had, alongside standard care, access to an eHealth program consisting of online education videos and video consultations developed in conjunction with the Dutch Heart Foundation. The control group received standard care. The primary outcome was the volume and costs of a composite of unplanned health care utilization, including emergency department visits, outpatient clinic visits, rehospitalization, patient-initiated telephone consultations, and visits to a general practitioner, measured using the Medical Technology Assessment Medical Consumption Questionnaire. Patient-reported anxiety and recovery were also assessed. Intention-to-treat and \"users-only\" analyses were used.
During the study period, 280 patients were enrolled and randomly allocated at a 1:1 ratio to the intervention or control group. The intention-to-treat analysis consisted of 136 and 135 patients in the intervention and control group, respectively. At 6 weeks, the primary endpoint had occurred in 43 of 136 (31.6%) patients in the intervention group and in 61 of 135 (45.2%) patients in the control group (hazard ratio 0.56, 95% CI 0.34-0.92). Recovery was faster in the intervention group, whereas anxiety was similar between study groups. \"Users-only\" analysis yielded similar results.
An eHealth strategy comprising educational videos and video consultations can reduce unplanned health care utilization and can aid in faster patient-reported recovery in patients following CABG surgery.
Netherlands Trial Registry NL8510; https://trialsearch.who.int/Trial2.aspx?TrialID=NL8510.
RR2-10.1007/s12471-020-01508-9.