Reduce Symptom Burden Research Articles

Palliative Care in the Midst of Adversity: Insights from a Low-Income Country.

The integration of palliative care into conventional healthcare services has demonstrated significant benefits in alleviating serious health-related suffering (SHRS), reducing symptom burden, and lowering healthcare expenditure for patients and families. Despite Lebanon's initial steps towards palliative care development, its integration remains inadequate, particularly due to the country's socio-political and economic challenges. This paper examines the current landscape of palliative care services in Lebanon, including their geographical distribution and care models, while addressing the obstacles impeding their progress. Data on palliative care services were gathered from the presentations of stakeholders at the 2023 National Palliative Care Conference. Currently, three nonprofit organizations provide home-based palliative care primarily for end-of-life patients, while seven hospitals offer palliative care through inpatient consultation teams, three of which have specialized palliative care wards and two outpatient clinics. Hospital-based palliative care services are primarily located in the capital city Beirut and operate within private healthcare facilities. Notably, only home-based services are provided free of charge, while hospital-based care is not reimbursed, thus limiting access to palliative care for only those who can afford it. The political and economic instability, inadequate policies and insufficient reimbursement, shortage of trained expertise and essential medicines like morphine, and inconsistent health education are some of the challenges that Lebanon faces in developing palliative care. A multilevel coordinated response and advocacy are crucial to drive policy reforms, enhance education, promote public awareness, and improve clinical practice ensuring quality and equitable palliative care access to all.

Environmental Enrichment and Health Outcomes Among Low-Grade Glioma Brain Tumor Survivors.

BACKGROUND: Brain tumor survivors who received radiotherapy (RT) are at a disproportionately increased risk of accelerated aging and symptom burden. We aim to examine the association between environmental enrichment (EE) and health outcomes among low-grade glioma survivors who received brain RT. METHODS: The study used a cross-sectional cohort design, enrolling participants approximately 5 years from diagnosis. The construct of EE consisted of social network, physical activity, employment status, and financial stability. Berkman-Syme Social Network Index, International Physical Activity Questionnaire, Vocational Index Scale, and a Socioeconomic Questionnaire were used to measure the construct of EE. Health outcome measures included the Montreal Cognitive Assessment, Symbol Digit Modality Test, clinical brain magnetic resonance images (pre-RT, approximately 2-3 years after RT, and approximately 5 years after RT), Karnofsky Performance Status Scale, and the MD Anderson Symptom Inventory Brain Tumor Module. Ordinal logistic regression estimated the association between levels of EE and health outcomes. RESULTS: Thirty-nine participants completed the study and experienced varying levels of EE. The median age was 44 years old, ranging from 26 to 78 years old. Nineteen individuals were diagnosed with oligodendroglioma, and 18 were diagnosed with astrocytoma. Thirteen participants had low EE, 17 had moderate EE, and 9 had high EE. Although not statistically significant, we observed patterns of increasing health outcomes (Montreal Cognitive Assessment, Symbol Digit Modality Test, and Karnofsky Performance Status Scale) related to increasing levels of EE. CONCLUSION: This study is an initial exploration into the role of EE in health outcomes and survivorship programs for persons with glioma. Future research should assess EE before treatment or at the time of diagnosis and be longitudinal to accurately ascertain the association between EE and health outcomes. Comprehensive neuro-oncology survivorship programs structured to facilitate EE may reduce symptom burden, promote neuroplasticity, and improve cognitive and functional outcomes after brain radiation.

JAK Inhibitors for Myelofibrosis: Strengths and Limitations.

The landscape of myelofibrosis (MF) has changed since the discovery of the JAK2 V617F mutation and subsequent development of JAK inhibitors (JAKis). However, treatment with JAKis remain a challenge. In this review we critically analyze the strengths and limitations of currently available JAK inhibitors. In MF patients, JAK inhibitors have been associated with reduced symptom burden and spleen size, as well as improved survival. However, durability of response and development of treatment resistance remain an issue. Recently, there has been increased efforts to optimize treatment with the development of highly selective JAK inhibitors, as well as use of combination agents to counter disease resistance through targeting aberrant signaling pathways. Treatment of MF patients with JAKi therapy can be challenging but the development of more potent and selective JAK inhibitors, as well as combination therapies, represent exciting treatment advances in this field.

Sex- and age-specific differences in the use of antiarrhythmic therapies among atrial fibrillation patients: a nationwide cohort study.

Atrial fibrillation (AF) patients frequently require active rhythm control therapy to maintain sinus rhythm and reduce symptom burden. Our study assessed whether antiarrhythmic therapies (AATs) are used disproportionately between men and women after new-onset AF. The nationwide Finnish anticoagulation in atrial fibrillation (FinACAF) registry-based linkage study covers all patients with new-onset AF in Finland during 2007-2018. Study outcomes included initiation of AATs in the form of antiarrhythmic drugs (AAD), cardioversion, or catheter ablation. The study population constituted of 229 565 patients (50% females). Women were older than men (76.6 ± 11.8 vs. 68.9 ± 13.4 years) and had higher prevalence of hypertension or hyperthyroidism, but lower prevalence of vascular disease, diabetes, renal disease, and cardiomyopathies than men. Overall, 17.6% of women and 25.1% of men were treated with any AAT. Women were treated with AADs more often than men in all age groups (adjusted subdistribution hazard ratio (aSHR) 1.223, 95%-CI 1.187-1.261). Cardioversions were also performed less often on women than on men aged <65 years (aSHR 0.722, 95%-CI 0.695-0.749), more often in patients ≥75 years (aSHR 1.166, 95%-CI 1.108-1.227), while no difference between the sexes existed in patients aged 65-74 years. Ablations were performed less often in women aged <65 years (aSHR 0.908, 95%-CI 0.826-0.998) and ≥75 years (aSHR 0.521, 95%-CI 0.354-0.766), whereas there was no difference in patients aged 65-74 years. Women used more AAD than men in all age groups but underwent fewer cardioversion and ablation procedures when aged <65 years.

Review article: The role of the gut-brain axis in inflammatory bowel disease and its therapeutic implications.

Treatments targeting the gut-brain axis (GBA) are effective at reducing symptom burden in irritable bowel syndrome (IBS). The prevalence of common mental disorders and IBS-type symptom reporting is significantly higher in inflammatory bowel disease (IBD) than would be expected, suggesting potential GBA effects in this setting. Manipulation of the GBA may offer novel treatment strategies in selected patients with IBD. We present a narrative review of the bi-directional effects of the GBA in IBD and explore the potential for GBA-targeted therapies in this setting. We searched MEDLINE, EMBASE, EMBASE Classic, PsychINFO, and the Cochrane Central Register of Controlled Trials for relevant articles published by March 2024. The bi-directional relationship between psychological well-being and adverse longitudinal disease activity outcomes, and the high prevalence of IBS-type symptom reporting highlight the presence of GBA-mediated effects in IBD. Treatments targeting gut-brain interactions including brain-gut behavioural treatments, neuromodulators, and dietary interventions appear to be useful adjunctive treatments in a subset of patients. Psychological morbidity is prevalent in patients with IBD. The relationship between longitudinal disease activity outcomes, IBS-type symptom reporting, and poor psychological health is mediated via the GBA. Proactive management of psychological health should be integrated into routine care. Further clinical trials of GBA-targeted therapies, conducted in selected groups of patients with co-existent common mental disorders, or those who report IBS-type symptoms, are required to inform effective integrated models of care in the future.

Hospice Administrators' and Providers' Perspectives on Providing Upstream Palliative Care: Facilitators, Barriers, and Policy Prescriptions.

Background: Among patients with serious illness, palliative care before hospice enrollment is associated with improved quality of life, reduced symptom burden, and earlier transitions to hospice. However, fewer than half of eligible patients receive specialty palliative care referrals. As most hospice clinicians and administrators have experience in specialty palliative care, several emerging programs propose engaging hospice clinicians to provide early palliative care. Objective: We sought to identify barriers and facilitators to upstream palliative care. Design: We conducted a key informant qualitative study among hospice administrators and clinicians. Setting/Subjects: We conducted semi-structured interviews with 23 hospice administrators and clinicians in eight states from March to August 2022. We identified participants using snowball and purposive sampling using states that participate in Medicare Advantage's value-based insurance design Model. Results: Respondents indicated that barriers to early palliative care included inadequate staffing and reimbursement. Hospice clinicians providing community-based palliative care can address access barriers and improve transitions to hospice. Respondents expressed desire for payer guidance in identifying eligible patients but were cautious about payers acting as direct palliative care providers. However, payers could facilitate uptake by broadening and specifying coverage of services to include goals of care conversations and symptom management. Routine referrals initiated by objective measures could potentially increase access. Conclusions: Utilizing hospice providers to provide upstream palliative care can increase access, improve outcomes, and ease the transition to hospice.

Development and implementation of a digital remote symptom monitoring program (RESPONSe) to support patients undergoing IV chemotherapy at a community ambulatory cancer clinic in Richmond, BC, Canada.

406 Background: We identified delays in accessing symptom management during treatment as an existing care gap at the Richmond Cancer Clinic. Patient-reported outcome measures (PROMs) have been demonstrated to communication, quality of life, and reduce symptom burden and acute care utilization. The RESPONSe program was initiated to address this gap by implementing a digital remote symptom monitoring (RSM) system paired with a supporting Symptom Management Nurse (SMN). Methods: We designed a digital RSM system to collect PROMs at specific timepoints during the first 6 months of IV chemotherapy initiation, with automated triaging logic to flag symptoms of concern that would result in a phone call from the SMN. Routine surveys include baseline, health-checks on days 3 and 10 post-chemotherapy, and pre-doctor’s-appointment; with optional health checks available anytime. Through competitive procurement, SeamlessMD was selected as the technology partner. From Aug 2023 to Jan 2024, multiple design cycles with dry run testing were held to incorporate branching logic, COSTARS oncology symptom specific questionnaires, automatic triaging flags, immediate self—management tips and links to educational resources. Concurrent development of SMN clinical workflows included in-person patient enrolment, digital dashboard monitoring and integration with the clinical chart. Results: From Jan 22-Apr 30, 2024, 32 patients have been enrolled with 42% over the age of 70. 90% of patients completed the baseline survey, 79% of patients completed at least 1 post-treatment health check and 45% completed at least 1 pre-doctors’-appointment survey. An average of 22 library resources were accessed per patient. Through the system, 19 severe and 34 moderate symptoms were identified. The dashboard prompted 63 telephone calls from the SMN, with a further 28 follow-up calls required. Early 3-month patient experience surveys (n=8) indicate high satisfaction, with 100% of patients saying they would recommend the program to others undergoing treatment. 87.5% of patients felt the system was very helpful in communicating their issues to the clinical team, with 100% reporting very high/extreme satisfaction with the support provided by the SMN. Additionally, 67% of patients felt very satisfied with the RESPONSe program overall. Conclusions: The RESPONSe program demonstrates the potential of digital RSM systems in improving patient-centered care and assisting with symptom reporting and management. Initial results suggest high engagement and patient satisfaction, showing this is a feasible approach in community oncology settings. We will be reviewing acute care utilization to assess the impact of the RESPONSe program on emergency room visits and hospitalization.

Patient and provider perceptions of the benefits and limitations of implementing ePRO-driven remote symptom monitoring into real-world cancer care settings.

325 Background: Remote symptom monitoring (RSM) utilizes electronic patient-reported outcomes (ePROs) to facilitate the monitoring and management of treatment-related symptoms outside of traditional healthcare appointment settings. Research suggests benefits surrounding the implementation of RSM; however, there is a literature gap regarding patient and provider perceptions of its implemented use. Methods: This qualitative study included patients and providers from the University of Alabama at Birmingham (UAB) and the Mitchell Cancer Institute (MCI) in Mobile, Alabama, who participated in semi-structured interviews aimed at gaining insight into the experiences of and perceptions surrounding RSM utilization. Interviews occurred over the phone, via digital videoconference, or in person, and were transcribed and inductively coded using NVivo software alongside a constant comparative method to establish a grounded coding schema. Results: Forty patients (20 UAB; 20 MCI) and 30 oncology providers (16 UAB; 14 MCI) identified 25 benefits across 3 overarching themes. Patients and providers found RSM Facilitated Proactive Management enabling early symptom identification and intervention, which helped to reduce symptom burden. Both groups also noticed RSM Improved Therapeutic Alliance, by fostering the relationship between the patient and their care team and enhancing the patient’s sense of safety and security through continued and sincere communication. Patients and providers also discussed how RSM Promoted Self-Efficacy and Management among Patients by allowing patients to feel involved and in control of their care, while giving them an inclination to be active members in their care. Providers felt that more active patient involvement in care contributed to a more accurate and thorough reporting of symptoms. Patients and providers also noted drawbacks regarding RSM, including lack of need in cases of no or mild symptoms. Conclusions: Patients and providers recognized the impact RSM had on patient care during cancer treatment. However, given some of the perceived limitations, patient and provider evaluations should continue to ensure successful implementation in future clinical trials. Clinical trial information: NCT04809740 .

Integrating palliative care into multiple myeloma management : Optimizing quality of life across the disease continuum.

Multiple myeloma (MM) poses significant challenges due to its complex symptomatology and evolving treatment landscape. While therapeutic advances have improved survival outcomes, holistic management of MM requires addressing the numerous physical and psychosocial needs of patients. Palliative care (PC) offers acomprehensive approach to symptom management and supportive care on aphysical, psychosocial and spiritual level; however, its role in MM remains underexplored. This retrospective single-center study examines the outcome of 22 MM patients admitted to the Division of Palliative Medicine at the Medical University of Vienna. We investigated reasons for admission, symptom severity, functional status, length of stay and overall survival. Most common reasons for palliative care unit (PCU) admission were nutritional problems (82%), fatigue (77%) and pain (68%). Median ECOG score at PCU admission was 3. The timepoint within the timeline of myeloma disease at which hospitalization took place varied greatly. Some patients were hospitalized shortly after diagnosis, other patients after many years of active disease and therapy. Median time from MM initial diagnosis to first PCU stay was 4.3years (range 0.6-23.8 years). The median length of hospital (PCU) stay was 11days (range 1-127days) and 45% of patients died during PCU hospitalization. The reduction in symptom burden as aresult of the inpatient stay in the PCU is reflected in the PERS2ON score, which was measured on the day of admission (median23 days, range 6-32days) and on the day of discharge (median16 days, range 7-20days). PC interventions effectively addressed the complex symptom burden experienced by patients with MM. Multidimensional approaches encompassing physical, psychological and social domains proved instrumental in optimizing quality of life. Integrating PC principles into MM management paradigms is essential to prioritize patient-centered care across the disease continuum.

Acceptability and timing considerations when administering patient-reported outcome measures (PROMs) among people with chronic health conditions who are culturally and linguistically diverse (CALD): a qualitative study protocol

IntroductionPatient-reported outcome measures (PROMs) are validated and standardised questionnaires that capture patients’ own reports of their symptoms, functioning and well-being. PROMs can facilitate communication between patients and clinicians, reduce symptom...

Experiences of patients with advanced chronic diseases and their associates with a structured palliative care nurse visit followed by an interprofessional case conference in primary care – a deductive-inductive content analysis based on qualitative interviews (KOPAL-Study)

BackgroundChronic, non-malignant diseases (CNMD) like chronic obstructive pulmonary disease (COPD), congestive heart failure (CHF) and dementia in advanced stages are very burdensome for patients. Timely palliative care with strong collaboration between general practitioners (GPs) and specialist palliative home care (SPHC) teams can reduce symptom burden, hospitalization rates, hospitalization costs and overall healthcare costs. The KOPAL-study on strengthening interprofessional collaboration for patients with palliative care needs tested the effect of an intervention comprising of a SPHC nurse assessment and an interprofessional case conference. This qualitative evaluative study explores patients’, proxies’ and their associates’ motivation to participate in the KOPAL-study and views on the (benefits of the) intervention.MethodsWe interviewed 13 male and 10 female patients as well as 14 proxies of patients with dementia and six associates of study participants using a semi-structured interview guide. All interviews were digitally recorded, transcribed verbatim and analysed with deductive-inductive qualitative content analysis.ResultsMotivation for participation was driven by curiosity, the aim to please the GP or to support research, respectively to help other patients. Few interviewees pointed out to have expected positive effects for themselves. The nurse visit was evaluated very positively. Positive changes concerning health care or quality of life were reported sparsely. Most study participants did not prepare for the SPHC nurse assessment. They had no expectations concerning potential benefits of such an assessment, the interdisciplinary case conference and an early integration of palliative care. The majority of interviewees reported that they did not talk about the nurse visit and the interprofessional case conference with their GPs.ConclusionOur results lead to the conclusion that SPHC nurses can serve as an advocate for the patient and thereby support the patients’ autonomy. GPs should actively discuss the results of the interdisciplinary case conference with patients and collaboratively decide on further actions. Patient participation in the interdisciplinary case conference could be another way to increase the effects of the intervention by empowering patients to not just passively receive the intervention.Trial registrationDRKS00017795 German Clinical Trials Register, 17Nov2021, version 05.

Essential Components of an Electronic Patient-Reported Symptom Monitoring and Management System

Multicomponent electronic patient-reported outcome cancer symptom management systems reduce symptom burden. Whether all components contribute to symptom reduction is unknown. To deconstruct intervention components of the Symptom Care at Home (SCH) system, a digital symptom monitoring and management intervention that has demonstrated efficacy, to determine which component or combination of components results in the lowest symptom burden. This randomized clinical trial included participants who were older than 18 years, had been diagnosed with cancer, had a life expectancy of 3 months or greater, were beginning a chemotherapy course planned for at least 3 cycles, spoke English, and had daily access and ability to use a telephone. Eligible participants were identified from the Huntsman Cancer Institute, University of Utah (Salt Lake City), and from Emory University Winship Cancer Institute, including Grady Memorial Hospital (Atlanta, Georgia), from August 7, 2017, to January 17, 2020. Patients receiving concurrent radiation therapy were excluded. Dates of analysis were from February 1, 2020, to December 22, 2023. Participants reported symptoms daily during a course of chemotherapy and received automated self-management coaching with an activity tracker without (group 1) and with (group 2) visualization, nurse practitioner (NP) follow-up for moderate-to-severe symptoms without (group 3) and with (group 4) decision support, or the complete SCH intervention (group 5). The primary outcome, symptom burden, was assessed as the summed severity of 11 chemotherapy-related symptoms rated on a scale of 1 to 10 (with higher scores indicating greater severity), if present. The 757 participants (mean [SD] age, 59.2 [12.9] years) from 2 cancer centers were primarily female (61.2%). The most common cancer diagnoses were breast (132 [17.4%]), lung (107 [14.1%]), and colorectal (99 [13.1%]) cancers; 369 patients (48.7%) had metastatic disease. The complete SCH intervention including automated self-management coaching and NP follow-up with decision support (group 5) was superior in reducing symptom burden to either of the self-management coaching groups, as shown by the mean group differences in area under the curve (group 1, 1.86 [95% CI, 1.30-2.41] and group 2, 2.38 [95% CI, 1.84-2.92]; both P < .001), and to either of the NP follow-up groups (group 3, 0.57 [95% CI, 0.03-1.11]; P =.04; and group 4, 0.66 [95% CI, 0.14-1.19]; P = .014). Additionally, NP follow-up was superior to self-management coaching (group 1 vs group 3, 1.29 [95% CI, 0.72-1.86]; group 1 vs group 4, 1.20 [95% 12 CI, 0.64-1.76]; group 2 vs group 3, 1.81 [95% CI, 1.25-2.37]; and group 2 vs group 4, 1.72 [95% CI, 1.17-2.26]; all P < .001), but there was no difference between the 2 self-management coaching groups (-0.52 [95% CI, -1.09 to 0.05]; P = .07) or between the 2 NP groups (-0.10 [95% CI, -0.65 to 0.46]; P = .74). In this randomized clinical trial of adult participants undergoing chemotherapy treatment for cancer, the complete intervention, rather than any individual component of the SCH system, achieved the greatest symptom burden reduction. These findings suggest that a multicomponent digital approach to cancer symptom management may offer optimal symptom burden reduction. ClinicalTrials.gov Identifier: NCT02779725.

Addressing financial hardship in malignant hematology and hematopoietic cell transplant: a team approach

AbstractFinancial hardship is a common experience for patients and their families after the diagnosis of a hematologic malignancy and is associated with worse outcomes. Health care costs, increased costs of living, income poverty, and inadequate wealth contribute to financial hardship after the diagnosis and treatment of a hematologic malignancy and/or hematopoietic cell transplant. Given the multidimensional nature of financial hardship, a multidisciplinary team-based approach is needed to address this public health hazard. Hematologists and oncologists may mitigate the impact of financial hardship by matching treatment options with patient goals of care and reducing symptom burden disruptive to employment. Social workers and financial navigators can assist with screening and resource deployment. Policymakers and researchers can identify structural and policy changes to prevent financial hardship. By alleviating this major health care burden from patients, care teams may improve survival and quality of life for patients with hematologic malignancies.

Identifying disease-modifying potential in myelofibrosis clinical trials

AbstractThe ultimate goal of bringing most new drugs to the clinic in hematologic malignancy is to improve overall survival. However, the use of surrogate end points for overall survival is increasingly considered standard practice, because a well validated surrogate end point can accelerate the outcome assessment and facilitate better clinical trial design. Established examples include monitoring minimal residual disease in chronic myeloid leukemia and acute leukemia, and metabolic response assessment in lymphoma. However, what happens when a clinical trial end point that is not a good surrogate for disease-modifying potential becomes ingrained as an expected outcome, and new agents are expected or required to meet this end point to demonstrate “efficacy”? Janus kinase (JAK) inhibitors for myelofibrosis (MF) have a specific impact on reducing symptom burden and splenomegaly but limited impact on the natural history of the disease. Since the introduction of ruxolitinib more than a decade ago there has been modest incremental success in clinical trials for MF but no major leap forward to alter the natural history of the disease. We argue that the clinical development of novel agents for MF will be accelerated by moving away from using end points that are specifically tailored to measure the beneficial effects of JAK inhibitors. We propose that specific measures of relevant disease burden, such as reduction in mutation burden as determined by molecular end points, should replace established end points. Careful reanalysis of existing data and trials in progress is needed to identify the most useful surrogate end points for future MF trials and better serve patient interest.

The Lived Experience of Patients with Chronic Kidney Disease: Insights From DISCOVER CKD

Introduction: Chronic kidney disease (CKD) can have a profound impact on patients’ lives. However, multinational data on patients’ lived experience with CKD are scarce. Methods: Individuals from the prospective cohort of DISCOVER CKD (NCT04034992), an observational cohort study, were recruited to participate in one-to-one telephone interviews to explore their lived experience with CKD. A target of 100 participant interviews was planned across four countries (Japan, Spain, the UK, and the USA). These qualitative interviews, lasting ∼60–90 min, were conducted in the local language by trained interviewers with specific experience in CKD, between January and June 2023. Transcribed interviews were translated into English for coding and analysis. Data were coded using qualitative research software. Results: Of the 105 participants interviewed, 103 were included in the final analysis. The average time since CKD diagnosis was 9.5 years, and at least half (50.5%) of participants had CKD stage 3A or 3B. CKD diagnosis was an emotional experience, driven by worry (n = 29/103; 28.2%) and shock (n = 26/103; 25.2%), and participants often reported feeling inadequately informed. Additional information was frequently sought, either online or via other healthcare providers. The proportion of participants reporting no impacts of CKD on their lives was highest in those with CKD stage 1 and 2 (64.3%). Conversely, every participant in the CKD stage 5 on dialysis group reported some impact of CKD on their lives. Across all participants, the most reported impacts were anxiety or depression (37.9%) or ability to sleep (37.9%). The frequency of the reported impacts appeared to increase with disease severity, with the highest rates observed in the dialysis group. In that group, the most frequently reported impact was on the ability to work (80.0%). Conclusion: Findings from this multinational qualitative study suggest that patients may experience symptoms and signs of disease prior to diagnosis; however, these are often nonspecific and may not be directly associated with CKD. Once diagnosed, the burden of CKD can have a diverse, negative impact on various aspects of patients’ lives. This highlights the need for early identification of at-risk individuals, and the importance of early CKD diagnosis and management with guideline-directed therapies to either prevent further deterioration of CKD or slow its progression, thus reducing symptom burden and improving quality of life.

Patient-reported outcomes-the role of the patient's subjective perspective for research and clinical care

Because only patients can adequately assess symptoms, disability, and quality of life, concordance between apatient's and physician's assessment is often low. Accordingly, patient-reported outcomes (PROs) are increasingly used in research and routine clinical care. In daily practice, PROs are not only applied to measure the patient's perceived outcome of medical treatments, but also to assess their health status before intervention starts. Typically, several patient-reported outcome measures (PROMs), which are reliable and valid, are available for the assessment of the most important PROMs. In daily clinical practice, the integration of PROs can be useful for clinical assessment and treatment planning or for quality management. Currently, the most promising application is routine patient monitoring using digital PROMs (ePROMs). Systematic reviews have revealed that the routine use of PROMs in daily clinical care is associated with, among others, improved physician-patient communication, higher patient satisfaction, reduced symptom burden, higher quality of life, and improved survival. This effect is especially strong if health care professionals continuously receive the results of the PRO monitoring. Patients are usually inclined to disclose their health status, and the positive effects of routine patient monitoring are widely recognized. However, several barriers to using PROs and PROMs still exist.

A description of the development of an innovative multi-component long COVID treatment program based on central sensitization with preliminary patient satisfaction data

ObjectiveEstimates of the prevalence of Long COVID in the United States or worldwide are imprecise, but millions of people are thought to be affected. No effective treatment exists for the often devastating symptoms of Long COVID. Central Sensitization has been postulated as a causal/explanatory mechanism for developing Long COVID. No treatment to date has targeted Central Sensitization. The present cross-sectional study describes the first 140 patients treated in a multi-component treatment program that targets Central Sensitization to reduce symptom burden, improve functioning, and lower the psychological distress observed in these patients. Methods140 patients diagnosed with Long COVID after an extensive medical evaluation were assessed for function, depression, and pain catastrophizing using questionnaires and patient satisfaction measures after completion of a 16-h Cognitive Behavioral Therapy treatment program focused on Central Sensitization. ResultsUpon admission, patients diagnosed with Long COVID were significantly impaired in their ability to function due to their symptoms. Further, 70% of the patients were depressed. Pain catastrophizing was observed in up to 20% of patients. ConclusionPatient satisfaction measures were high for the sample at the end of the treatment program suggesting that a multicomponent treatment program targeting Central Sensitization is acceptable to patients. Further research is needed to explore the effectiveness and durability of this treatment approach.

Implementation of a remote symptom monitoring pathway in oncology care: analysis of real-world experience across 33 cancer centres in France and Belgium

Remote patient monitoring (RPM) of symptoms using electronic patient reported outcomes (ePROs) has been shown to reduce symptom burden and hospitalizations, increase dose intensity and improve quality of life of patients during systemic therapy being recommended by international guidelines in routine oncology practice. However, implementation in routine care has been slow and faces several challenges. In this study we report on the real-world multi-center implementation of a RPM pathway encompassing weekly patient symptom ePRO reporting with electronic alert notifications triggered to providers for severe or worsening symptoms. An RPM pathway was implemented in 33 European cancer centers in France and Belgium between November 2021 and August 2023. The implementation process followed a standardized phasic process of Exploration, Preparation, Implementation and Sustainment. Patient-level and system-level implementation metrics were collected and evaluated according to the Reach, Effectiveness, Adoption, Implementation and Maintenance (RE-AIM) framework. Across the 33 cancer centers, the RPM pathway was implemented for 3015 patients cared for by 168 providers. The RPM pathway enabled effective and timely symptom management with 94.6% of all alerts (10,132/10,711) evolving to an improvement two weeks later, among which 88.4% (9468/10,711) showed ≥2 grades of improvement on the 5-point scale of the Patient-Reported Outcomes Common Terminology (PRO-CTCAE). The median time to alert management by the care team was 13 h 41 min (25th percentile: 1 h 42 min, 75th percentile: 1 day+ 19 h 54 min), with 80% (36,269/45,334) of alerts managed by a nurse navigator telephone call. Patient adherence with weekly ePRO reporting was 82% (2472/3015). In an experience survey, 87% (32/38) of providers were satisfied with integrating the solution into their organization and 90% (276/307) of the patients felt that ePRO reporting positively impacted their care. As of March 2024, the pathway has been maintained in all participating centers, with activation of an additional 18 centers following data lock, and reimbursement for this RPM pathway approved in France in October2023. These findings demonstrate the feasibility of implementing and maintaining an RPM pathway during routine care across a diverse group of cancer centers in the European setting, with high levels of patient and provider engagement, and positive clinical impact. Part of this work was funded Breast Cancer Research Foundation (Career Development Award to Maria Alice Franzoi) and Resilience (nurse navigation and technology support).

The Role of Secondary Conservative Management Strategies in Bladder and Bowel Dysfunction: A Systematic Review and Meta-analysis

We sought to determine the effect of secondary management strategies in addition to urotherapy on bowel bladder dysfunction outcomes. The review protocol was prospectively registered (CRD42023422168). MEDLINE, Embase, Cochrane Central Register of Controlled Trials, CINAHL, and Scopus (database initiation until June 2023) were searched. Comparative studies of secondary management strategies vs conventional urotherapy alone were included. Two authors independently screened titles, abstracts, and reviewed full-text articles. Two authors extracted data related to study characteristics, methodology, subjects, and results. In this systematic review and meta-analysis of 18 studies and 1228 children, secondary management strategies (home-based education, biofeedback, and physical therapy) were associated with reduced symptom burden, fewer recurrent urinary tract infections, and improved uroflowmetry findings than children treated solely with urotherapy for conservative management. Although there is significant reporting heterogeneity, secondary conservative management strategies such as home education, biofeedback or cognitive behavioral therapy, and physiotherapy-based education are associated with less urinary incontinence, fewer infections, and fewer abnormal uroflowmetry findings.

The Concussion, Exercise, and Brain Networks (ConExNet) study: a cohort study aimed at understanding the effects of sub-maximal aerobic exercise on resting state functional brain activity in pediatric concussion

BackgroundRecent scientific evidence has challenged the traditional “rest-is-best” approach for concussion management. It is now thought that “exercise-is-medicine” for concussion, owing to dozens of studies which demonstrate that sub-maximal, graded aerobic exercise can reduce symptom burden and time to symptom resolution. However, the primary neuropathology of concussion is altered functional brain activity. To date, no studies have examined the effects of sub-maximal aerobic exercise on resting state functional brain activity in pediatric concussion. In addition, although exercise is now more widely prescribed following concussion, its cardiopulmonary response is not yet well understood in this population. Our study has two main goals. The first is to understand whether there are exercise-induced resting state functional brain activity differences in children with concussion vs. healthy controls. The second is to profile the physiological response to exercise and understand whether it differs between groups.MethodsWe will perform a single-center, controlled, prospective cohort study of pediatric concussion at a large, urban children’s hospital and academic center. Children with sport-related concussion (aged 12–17 years) will be recruited within 4-weeks of injury by our clinical study team members. Key inclusion criteria include: medical clearance to exercise, no prior concussion or neurological history, and no implants that would preclude MRI. Age- and sex-matched healthy controls will be required to meet the same inclusion criteria and will be recruited through the community. The study will be performed over two visits separated by 24–48 h. Visit 1 involves exercise testing (following the current clinical standard for concussion) and breath-by-breath gas collection using a metabolic cart. Visit 2 involves two functional MRI (fMRI) scans interspersed by 10-minutes of treadmill walking at an intensity calibrated to Visit 1 findings. To address sub-objectives, all participants will be asked to self-report symptoms daily and wear a waist-worn tri-axial accelerometer for 28-days after Visit 2.DiscussionOur study will advance the growing exercise-concussion field by helping us understand whether exercise impacts outcomes beyond symptoms in pediatric concussion. We will also be able to profile the cardiopulmonary response to exercise, which may allow for further understanding (and eventual optimization) of exercise in concussion management.Trial registrationNot applicable.