Treatment Burden Research Articles

Perspectives and Experiences of Patients with AKI: A Systematic Review.

Key Points Six themes have been identified reflecting the perspectives and experiences of adults with AKI.Patients are unaware of AKI diagnosis and prognosis, feel that care is fragmented, and are burdened by treatment.Providing education, reducing treatment burden, and ensuring excellence in care may help to address patients' needs and improve AKI management. Background AKI is associated with higher risk of mortality and progression to CKD. The challenges and uncertainty in the diagnosis, self-management, and prevention of AKI can be distressing for patients. We aimed to perform a systematic review of qualitative studies/surveys that reported the perspectives and experiences of adults with AKI. Methods We searched MEDLINE, Embase, PsycINFO, and CINAHL from inception to January 17, 2024. Thematic textual analysis was used to synthesize the findings. Results We included 20 studies (ten qualitative studies, ten surveys) involving 867 participants. We identified six themes: navigating the unknown (an unexpected and unfamiliar diagnosis, tossed about in a fragmented system, and dismissed and vulnerable at discharge); impaired life participation, relationships, and well-being (limiting ability to do daily activities and straining relationships); unbearable and unsustainable treatment burden (adding strain on family members, financial pressure because of medical expenses, and cumulative stress of ongoing monitoring); uncertain whether recovery is attainable (possible permanence of kidney damage, fear about nephrotoxic medications, and terrified about the need for dialysis); less consequential than other health priorities (short term and reversible and prioritizing other comorbidities and conditions); and empowered in managing own health (focusing on optimizing kidney health, gaining confidence in self-management, and reassured with social and clinical support). Conclusions Patients may be unaware of their AKI diagnosis and prognosis, feel that care is fragmented, and be burdened by treatment. Providing education, alleviating treatment burden, and implementing a comprehensive model of care may help to address the needs of patients with AKI leading to better outcomes.

Diverticulitis in Older Adults: A Review of Etiology, Diagnosis, and Management.

Diverticulitis accounts for over 300,000 hospitalizations annually in the United States and its incidence increases with age. Among older adults, diverticulitis is the fourth leading cause for emergency surgery. Older adults with multimorbidity and geriatric syndromes are often excluded from clinical studies, leaving a gap in the evidence needed to guide management. Here, we provide a clinically oriented review of the diagnosis and management of older adults with diverticulitis through the lens of age-friendly care. We reviewed the literature describing the epidemiology, diagnosis, management, and prevention of diverticulitis in older adults. Due to age-related physiologic changes, the presence of geriatric syndromes, and multimorbidity, older adults with diverticulitis often present with atypical symptoms, variable laboratory findings, and are at higher risk for complications than younger patients. Guidelines support a more aggressive approach to diagnosis in this population, with lower threshold for obtaining diagnostic imaging. Antibiotics remain a mainstay of treatment for uncomplicated disease, and surgical management should be focused on severity of disease and the balance between the likelihood of improving quality of life and risks and burden of treatment. Diverticulitis is a common disease that has a unique presentation among older individuals with limited evidence to guide management. Diagnosis and treatment should focus on what matters most to the patient, providing the most meaningful outcome possible within the context of multimorbidity, patient goals, symptom burden, and anticipated treatment outcomes.

Challenges and barriers to physician decision-making for prescribing and deprescribing among patients with multimorbidity in eastern China’s primary care settings: a qualitative study

ObjectivesPatients with multimorbidity have an increased risk of medication-related problems. Physicians face the dilemmas of multimorbidity management with multiple medications in primary care settings. We aimed to investigate the experiences...

Impact of new medications on the treatment of Immune TTP.

The last decade has seen the introduction of two new licensed therapies for thrombotic thrombocytopenic purpura (TTP)-caplacizumab and recombinant ADAMTS 13 (rADAMTS 13), for immune (iTTP) and congenital TTP (cTTP) respectively. They improve acute TTP outcomes, reduce the need for plasma therapy, time to clinical response and treatment burden. Future pathways need to replace plasma exchange in acute TTP and optimise/personalise rADAMTS 13 in cTTP. Future emphasis should focus on additional monoclonals/treatments to tackle ADAMTS 13 antibodies.

Exploration of treatment burden through examination of workload and patient capacity during transition onto kidney replacement therapy: a systematic review of qualitative research

BackgroundPatients with advanced chronic kidney disease requiring initiation of kidney replacement therapy (KRT) are frequently asked to enact complex management plans. Treatment burden has been defined as the effect of healthcare workload and the capacity a person has to manage this workload has on wellbeing. The aim of this review is to examine the experience of healthcare workload and the factors that affect capacity to meet that workload for people transitioning onto KRT for the first time, using a framework synthesis of published literature informed by normalisation process theory (NPT) and theory of patient capacity (TPC).MethodsMedline, Scopus and CINAHL were systematically searched with manual citation and reference searching. Studies were included if meeting the criteria of adults aged 18 or over transitioning for the first time onto any modality of KRT (haemodialysis, peritoneal dialysis or kidney transplantation), using qualitative methodologies to describe any aspect of experiences of healthcare workload or any factors that affect capacity to manage workload were included. s and full papers were independently screened by two reviewers and data extraction and quality appraisal were also independently conducted by two reviewers. Qualitative data were analysed using framework synthesis informed by NPT and TPC.ResultsA total of 24,380 studies were screened, 406 full texts were reviewed and 18 studies were included. There were four broad categories of workload described: making sense of KRT, working out what to do and how to do it, meeting the challenges of KRT, and reflecting on work done. Patient capacity influenced the experience of all types of workload and the treatment burden generated by the work.ConclusionsTransitioning onto KRT is a period of very high healthcare workload and potentially high treatment burden. The relationship between healthcare workload and capacity to handle workload is complex, multifactorial and changes over time. By better understanding workload, capacity and burden during transition, we can develop better ways of measuring these important aspects of care and develop interventions to reduce treatment burden in those transitioning onto KRT.

Hidradenitis suppurativa with and without draining tunnels: A real-world study characterizing differences in treatment and disease burden.

Hidradenitis suppurativa (HS) is a chronic, inflammatory, neutrophilic skin disease associated with a considerable clinical burden. In more severe disease, subepidermal draining tunnels may form. To characterize the clinical profile of patients with moderate-severe HS with and without draining tunnels, and the clinical and health-related quality of life (HR-QoL) burden of draining tunnels. Data were drawn from the Adelphi HS Disease Specific Programme™, a cross-sectional survey with retrospective data collection, across the United States, France, Germany, Italy, Spain and the United Kingdom between November 2020 and April 2021. Patients were aged ≥10 years and had HS. Clinical outcomes, recorded by physicians, comprised patient demographics and HS characteristics, symptoms and treatment. HR-QoL measures included patient and physician survey questions, and validated HR-QoL instruments. Of the 580 patients with moderate-severe HS, 46% had draining tunnels. Patients with draining tunnels had more abscesses, inflammatory nodules and scarring than those without. Patients with draining tunnels were significantly (p < 0.05) more likely to be treated with biologics (41% vs. 27%), but often patients with tunnels who were eligible for biologics had not received them. Patients with draining tunnels experienced significantly more inflammation/redness (73% vs. 63%), drainage from lesions (62% vs. 40%) and pain on sitting (48% vs. 37%) than those without (p < 0.05). Draining tunnels were also significantly associated with low mood/depression (30% vs. 18%), sleep disturbance (28% vs. 19%) and fatigue (28% vs. 18%) versus no tunnels (p < 0.05). Physicians agreed that patients with draining tunnels experienced a negative impact of disease compared to those without. This was reflected in patient-reported surveys and HR-QoL instruments. Patients with moderate-severe HS and draining tunnels experience greater clinical and HR-QoL burden than those without, emphasizing the importance of tunnels in disease impact.

Ref-1 redox activity regulates retinal neovascularization by modulating transcriptional activation of HIF-1α.

Retinal neovascularization impairs visual function and is a hallmark of several neovascular eye diseases, including retinopathy of prematurity (ROP) and proliferative diabetic retinopathy (PDR). Current treatments include intravitreal injections of anti-vascular endothelial growth factor (VEGF) biologics, but these therapeutics are often accompanied by high treatment burden and resistance to therapy. Prior studies indicate that APE1/Ref-1, a multifunctional protein with both endonuclease (APE1) and redox-mediated transcriptional regulatory activity (Ref-1), activates multiple pro-angiogenic and pro-inflammatory signaling pathways by chemically reducing key cysteine residues in transcription factors, thereby activating them. Here, we investigated the previously unexplored role of Ref-1 in retinal neovascularization. We demonstrate that Ref-1 is highly expressed in endothelial cells in human PDR and in the oxygen-induced retinopathy (OIR) mouse model of retinal neovascularization. Ref-1 is also highly expressed in microglia and astrocytes in OIR. A small molecule Ref-1 redox inhibitor, APX2009, decreased retinal neovascularization in OIR after systemic delivery. Invitro, hypoxic endothelial cells did not exhibit upregulation of Ref-1 but rather increased Ref-1 nuclear localization. APX2009 decreased hypoxic endothelial cell proliferation and HIF-1α transcriptional activation. Thus, Ref-1 redox activity may be a novel therapeutic target for the treatment of retinal neovascularization, making APX2009 a promising systemic therapeutic approach for the treatment of vascular retinopathies such as ROP and PDR.

Exploring the burden of treatment in patients' experiences of chronic condition management: A mixed-method study in Mendoza, Argentina.

This study investigated how patients managed their chronic diseases, focusing on burden of treatment, within the primary care level in Mendoza Province, Argentina. The study used a mixed-methods approach, including a qualitative component with a purposive sampling of patients with diabetes, hypertension, or depression using primary care services, and a quantitative component with secondary analysis of databases from public and social security. Ten focus group sessions were conducted at primary healthcare centers in urban and rural areas. The Burden of Treatment theory was used to frame the analysis. The study found that accessing care was difficult due to appointment difficulties and long waiting times, and obtaining medication and laboratory tests at secondary centers was also problematic. Non-emergency hospital care required primary care referrals, and users in rural areas faced access problems. Financial constraints were significant, with co-payments in social security sector, transportation costs, and lost work revenue. Strategies employed included networking, emergency service use, careful planning, and taking loans. This study underscores the complex implications of chronic disease management in a subnational healthcare system and provides insights for policymakers and healthcare providers.

Aligning Medications With What Matters Most: Conversations Between Pharmacists, People With Dementia, and Care Partners.

Successful deprescribing for people with dementia (PWD) depends on communication about medication-related priorities between PWD, care partners and clinicians. The objective of this study was to gain in-depth knowledge of how elicitation of PWD and care partner medication-related priorities during a deprescribing intervention shaped discussions with pharmacists about medications. Qualitative analysis of audio-recorded interactions between pharmacists and patient-care partner dyads in a pilot study of a pharmacist-led deprescribing intervention for PWD in primary care. Patients ≥ 65 years taking ≥ 7 medications and care partners were recruited from an integrated delivery system in Colorado and a community-based medical practice in Maryland. Qualitative content analysis was used to analyze 82 transcripts from encounters with 55 patient-care partner dyads. The mean (SD) age of PWD was 81 (8.1) years; 45% were women, 33% Black, and 15% Hispanic. PWD took an average of 13 (±5.3) medications at baseline. Care partners were on average 66 (13) years of age and most were spouses/partners of the PWD. Content analysis identified five themes: (1) Reducing medication-related treatment burden; (2) Alleviating burdensome symptoms; (3) Maintaining cognition and function; (4) Discussion of tradeoffs; (5) Challenges to deprescribing. After eliciting patient and care partner priorities, pharmacists recommended both deprescribing and prescribing. Findings from this secondary analysis of a pilot deprescribing intervention suggest eliciting medication-related priorities of PWD and care partners can support goal-concordant care. These results can inform development of interventions to optimize medications for this population.

Treatment Interval Progression and Adherence to Observe-and-Plan Regimen for Neovascular Age-Related Macular Degeneration Treated with Aflibercept 2mg.

Treatment burden of anti-vascular endothelial growth factor (VEGF) therapy for neovascular age-related macular degeneration (AMD) can be reduced with the Observe-and-Plan (O&P) regimen, which allows for an individualized treatment while reducing the number of injections and assessment visits. In this study, we evaluate detailed characteristics of treatment interval adjustment through individual follow-ups and evaluate adherence to the O&P regimen in a real-world setting in one of the largest centers in Europe. This was a retrospective cohort study of treatment-naïve eyes with neovascular AMD that were treated with intravitreal aflibercept 2mg in an O&P regimen who had persisting exudation after completion of loading dose. We evaluated decisions on adjustment of treatment intervals and adherence to the O&P regimen from a total of 5 follow-up visits. Data from visits and decision on treatment intervals were extracted from a treatment database. A total of 561 eyes were eligible for this study. Treatment intervals gradually increased from a 4-weeks interval (loading dose) to a wide distribution of intervals from 4-weeks to 12-weeks, and at the 5th follow-up 24.9% were followed without any treatment. In total, 209 eyes (49.5%) at the 5th follow-up (of 422 eyes present at the 5th follow-up) adhered to the treatment algorithm. Aflibercept 2mg in an O&P treatment regimen leads to a variety of treatment intervals, and some eyes may be overtreated. An important proportion of eyes deviate from the intended O&P treatment regimen. Our study contributes to understanding real-world implications of personalized treatment regimens.

Treatment satisfaction and patient reported outcomes among people with opioid use disorder participating in an open-label, non-randomised trial of long-acting injectable buprenorphine treatment in Australian custodial settings.

A trial of long-acting injectable buprenorphine (LAIB) in Australian prisons allowed examination of treatment satisfaction and patient-reported outcomes. UNLOC-T was a 16-week non-randomised open-label study. Men and women aged ≥18 years with moderate/severe DSM-5 opioid use disorder currently serving a custodial sentence ≥6 months were recruited. Participants not in opioid agonist treatment (OAT) commenced LAIB (n = 67); those already stable on oral methadone treatment were recruited to a comparison arm (n = 62). The Treatment Satisfaction Questionnaire for Medication (TSQM), Patient Satisfaction Visual Analogue Scale (PS-VAS) and Treatment Burden Questionnaire assessed treatment satisfaction; the Kessler Psychological Distress Scale (K10), 12-Item Short Form Health Survey (SF-12) and the Australian Treatment Outcomes Profile (ATOP) measured mental health, physical health and quality of life. Among participants receiving LAIB, TSQM global satisfaction scores significantly increased from 68.2 (SD 16.6) to 77.0 (SD 18.4) by week 16 (p = 0.0041), as did satisfaction measured by the PS-VAS (62.5 [SD 29.2] vs. 79.4 [SD 25.5], p = 0.0005). Statistically significant improvements between baseline and week 16 were also observed for K10, SF-12 (total) and SF-12 (mental health) scores. By the end of the study, 'successful' treatment outcomes were observed in the ATOP domains of psychological health (84%), physical health (80%) and quality of life (86%). Participants inducted and stabilised on LAIB reported high treatment satisfaction and improved health and wellbeing. Results suggest LAIB is acceptable to people with opioid use disorder in custody, supporting scaleup of this medication to increase coverage of OAT in these settings. https://www.anzctr.org.au ACTRN12618000942257.

Spinal Muscular Atrophy Update in Best Practices: Recommendations for Treatment Considerations.

Spinal muscular atrophy (SMA) is an autosomal recessive disorder caused by biallelic variants of the Survival Motor Neuron 1 gene (SMN1) that affects approximately 1 in 15,000 live births. Availability of 3 SMN-enhancing treatments for SMA has led to urgency to review how clinicians and patients use these treatments for SMA, while additional research and real-world data and experience are being collected. This work describes important factors to assist with decision-making for SMN-enhancing treatments. A systematic literature review was conducted on SMN-enhancing treatments for SMA and related studies. A working group of American and European health care providers with expertise in SMA care identified barriers and developed recommendations through a modified Delphi technique with serial surveys and feedback through virtual meetings to fill gaps for information where evidence is limited. A community working group of an individual living with SMA and caregivers provided insight and perspective on SMA treatments and support through a virtual meeting to guide recommendations. The health care provider working group and the community working group agreed that when determining whether to start, change, add, or discontinue a treatment, essential considerations include patient and family/caregiver perspective, and treatment safety and side effects. When initiating treatment for patients newly diagnosed with SMA, important patient characteristics are age and Survival Motor Neuron 2 gene (SMN2) copy number. Furthermore, when initiating, changing, or adding treatment, current clinical status and comorbidities drive decision-making. When considering a medication or treatment plan change, unless there is an urgent indication, a treatment and associated patient outcomes should be monitored for a minimum of 6-12 months. When determining a treatment plan with an adolescent or adult with SMA, consider factors such as quality of life, burden vs benefit of treatment, and reproductive issues. Access to care coordination and interdisciplinary/multidisciplinary care are essential to treatment success. Sharing information about current knowledge of treatments and shared decision-making between health care providers and patients living with SMA and caregivers are essential to overcoming barriers to providing SMN-enhancing treatments.

Surgical treatment in patients with advanced gastrointestinal stromal tumours (GISTs) in second-line and later stages: A single-centre cohort study.

818 Background: Gastrointestinal stromal tumour (GIST) after imatinib treatment failure usually progresses rapidly with limited overall survival. Previous studies have suggested that surgery is beneficial for advanced GISTs in disease control to imatinib, but the role of surgery in &gt; = 2 line patients remains unclear. Methods: Imatinib-resistant patients with advanced GIST between May 2009 and Nov. 2023 were included. Surgical treatments included tumour reduction, radiofrequency ablation and TACE. The primary endpoint was overall survival (OS) and secondary endpoints were time to second-line treatment failure (TTF) and postoperative morbidity. To balance clinicopathological characteristics, 1:1 propensity score matching (PSM) was used. Results: A total of 242 patients with advanced GIST treated with 2nd-line or later drugs were included, including 125 in the surgical group and 117 in the non-surgical group. The median follow-up was 30.3 months. OS was significantly better in the surgical group than in the non-surgical group (pre-PSM: 51.7m vs 35.9m , p = 0.001; post-PSM: 50.8m vs 38.8m, p = 0.043). Univariate analysis showed that surgical treatment (HR 0.487, 95% CI 0.320-0.740, p = 0.001), age ≤60 years (HR 0.640, 95% CI 0.411-0.997, p = 0.049) and low tumour burden (HR 0.491, 95% CI 0.293-0.822, p = 0.007) were associated with prolonged OS. Multivariate analysis indicated that surgical treatment (HR 0.541, 95% CI 0.348-0.843, p = 0.007) and low tumour burden (HR 0.510, 95% CI 0.300-0.865, p = 0.012) were significantly associated with OS benefit. Patients (n = 84) who had surgical treatment during second-line treatment had longer TTF compared to patients (n = 158) who had TKI only (14.2m vs 8.1m , p = 0.003). There were 29 (14.8%) postoperative complications with Clavien-Dindo classification ≥3, including 5 deaths. Conclusions: Surgical treatment can provide a survival benefit for patients with second-line and later advanced GIST, but further studies are needed for a more detailed indication of the surgical population.

Comparing the efficacy and safety of extended vs standard dosing of ocrelizumab in MS: A systemic review and meta-analysis.

Multiple Sclerosis (MS) is a challenging autoimmune disease that disrupts the central nervous system, leading to a range of symptoms. Ocrelizumab, a treatment commonly used for MS, targets B cells to help manage the disease. While the standard-interval dosing (SID) is effective, the COVID-19 pandemic raised concerns about safety, particularly around immune responses. This prompted interest in extended-interval dosing (EID), which spaces out treatments more. Our study aims to compare how well EID works against SID and if it's safer for patients. We followed strict guidelines to review the research on EID and SID in MS patients. Using databases like PubMed and Scopus, we looked for studies up to July 2024. We included clinical trials and cohort studies that directly compared these dosing strategies. A team of reviewers collected data, assessed the quality of the studies, and performed statistical analysis to find any differences in effectiveness and safety. Our analysis included 11 studies involving over 2,500 patients. We found that EID and SID were similarly effective in controlling disease activity (no significant difference in NEDA). However, patients on EID experienced fewer side effects, with significantly fewer adverse events compared to those on SID. EID appears to be just as effective as SID in managing MS, but with the added benefit of reducing side effects. This makes EID a promising alternative for long-term treatment, offering patients a lighter treatment burden while maintaining disease control. More research is needed to explore its long-term impact.

PHARMACOVIGILANCE IN PRACTICE: ASSESSING ADVERSE DRUG REACTIONS IN TERTIARY CARE HOSPITAL CENTRAL INDIA

Objective: Our study aimed to evaluate the frequency, severity, and causality of ADRs reported at the ADR Monitoring Centre, Department of Pharmacology, MGM Medical College, Indore, to improve drug safety practices. Methods: A retrospective study at the ADR Monitoring Centre in Indore analyzed suspected ADR Reporting Forms from the past six months. The analysis focused on ADR frequency, severity, and causality, categorized using the World Health Organization (WHO) causality assessment scale. Results: Over six months, 502 ADR forms were reported at Maharaja Yashwant Rao Hospital, Indore, with males (25-55 years) accounting for 50% of the cases. The psychiatry department reported the most ADRs (57.5%), followed by pediatrics (12.1%) and gynecology (9.7%). Commonly implicated drug classes were antipsychotics, antibiotics, and anticonvulsants. Valproate (14%), ceftriaxone (8%), and olanzapine (6%) were frequently involved drugs. About 52.6% of ADRs were certain, and 25% were probable in causality analysis. Conclusion: Monitoring and reporting ADRs are crucial in healthcare. Raising awareness about ADR reporting among doctors and patients can promote safer drug use, reduce associated ADR-related morbidity, ease the treatment burden on patients, and enhance their quality of life.

Comparing Adherence, Side Effects, and Satisfaction in Oral and Topical Minoxidil: A Cross-Sectional Study.

Hair loss disorders negatively impact quality of life. Topical and oral minoxidil are hair loss therapeutics that require daily use to achieve sustained benefits. Patients on topical minoxidil often report aesthetic and discomfort concerns (eg, greasy hair), which may limit adherence. Oral minoxidil is not FDA-approved for alopecia and carries a higher risk of systemic side effects. Efficacy between the 2 is similar. However, the impact of the route of administration on patient adherence and satisfaction remains unclear. Our study investigates whether topical or oral minoxidil yields greater adherence and satisfaction while comparing side effects. A survey was distributed to patients on minoxidil (n=50, response rate 98.0%) to assess ease of treatment, adherence, satisfaction, and side effects. Patients on oral minoxidil reported greater ease of treatment (P=0.0004) and styling their hair on treatment (P=0.0112). Fewer patients on oral minoxidil stopped treatment due to difficulty of use (0% vs 18.8%, P=0.0076). Oral patients missed less treatment days (x=0.15 vs x=1.2, P=0.0022) and reported greater satisfaction in hair volume (P=0.0098) and change of hair (P=0.0159). Side effects were similar, except for a higher incidence of hypertrichosis among patients on oral minoxidil (48.5% vs 6.25%, P=0.0015). These findings suggest that oral minoxidil is superior to topical in terms of ease of use, adherence, and satisfaction without increasing systemic side effects. By circumventing scalp application, oral minoxidil reduces the treatment burden and avoids the aesthetic and discomfort complaints that limit adherence. When establishing treatment plans, physicians should consider patient experience and its impact on adherence. J Drugs Dermatol. 2025;24(2):131-133. doi:10.36849/JDD.8424.

Non-factor Therapies for Hemophilia: Achievements and Perspectives.

Non-factor replacement therapies (NFTs) have been developed to address the limitations of conventional replacement therapies, aiming to improve hemostasis and provide enhanced protection against bleeding episodes and long-term joint damage for patients both with and without inhibitors. Factor VIII (FVIII)-mimetic agents, such as emicizumab, have transformed the management of hemophilia A with inhibitors, offering a lower treatment burden and an effective alternative for those without inhibitors as well. Rebalancing agents, including anti-tissular factor pathway inhibitor agents (concizumab and marstacimab) and serpin inhibitors like fitusiran, have shown promising efficacy for patients with hemophilia B with inhibitors and other hemophilia subtypes. Administered subcutaneously, NFTs generate stable thrombin levels and feature a long half-life, which can shift severe hemophilia toward a milder phenotype. These therapies are effective regardless of inhibitor status and hold potential for application in other bleeding disorders. Evaluating the potential thrombotic risk after implementing mitigation measures, along with the development of anti-drug antibodies (ADAs), remain critical areas for further analysis. NFTs pose additional challenges due to their complex mechanism of action and the absence of a standardized laboratory assessment method. Unresolved issues include optimal management strategies for major surgeries and tailored approaches for safe use in older populations. This review highlights the progress and future potential of NFTs in treating persons with hemophilia.

By Their Side, Not on Their Chest: Ethical Arguments to Allow Residential Aged Care Admission Policies to Forego Full Cardiac Resuscitation.

We argue that Aged Residential Care (ARC) facilities should be allowed to create and adopt an informed "No Chest Compression" (NCC) policy. Potential residents are informed before admission that staff will not provide chest compressions to a pulseless resident. All residents would receive standard choking care, and a fully discussed advance directive would be utilized to determine if the resident wanted a one-minute trial of rescue breaths (to clear their airway) or utilization of the automatic defibrillator in case of arrest. The benefits of chest compressions for residents in ARC are dubious, and the burdens are high. For frail elderly people without a pulse, chest compressions are arguably unethical because the chance of benefit is minuscule, the procedure is violent, painful, and challenging to perform correctly, and procedures detract from a peaceful end of life. These burdens fall on residents, their families, ARC facilities providers, and society. We further argue that limitations on universal invasive resuscitation, such as advance directives, need to be more consistently sought and applied. The goals of an informed NCC policy are twofold: removing added suffering from a person's end-of-life experience and increasing ARC residents' understanding of the burdens of ineffective treatments for pulselessness.

Beliefs about HIV cure: A qualitative study of people living with HIV in Soweto, South Africa

Background: Rare cases of HIV cure exist. Clinical trials of HIV cure are also underway. However, little is documented about how potential cures are perceived by African people living with HIV, although they are key stakeholders.Objectives: We explored knowledge, beliefs, and experiences about HIV cure in Soweto, South Africa.Method: We conducted qualitative research with five stratified focus groups (N = 49). Consenting adults living with HIV were eligible. Facilitators asked participants about their knowledge of HIV cure, experience of purported cures, and beliefs about cure possibilities. Transcripts from audio recordings were thematically analysed.Results: Participants had knowledge of the concept of cure as eradication, not remission. Three main themes emerged about possible HIV cures. Firstly, hope and scepticism: people feared unequal access to technologies. Secondly, cultural and conventional approaches: there were beliefs in traditional healers, scepticism towards culturally purported cures (e.g. imbiza herbal tonic), and a desire for medical cures to obviate pill burdens. Thirdly, anticipated socio-behavioural effects: beliefs existed that cures might improve happiness, reduce emotional burdens of disclosure, facilitate HIV-free generations, increase risk behaviours, and reduce health checks, but not change societal attitudes to HIV.Conclusion: In Soweto, South Africa, people living with HIV hope for medical technologies – such as cure and long-acting treatments – to relieve the biopsychosocial burdens of chronic treatment. Despite treatment knowledge, some people try culturally purported cures for HIV. In HIV cure trials, consent language should avoid ‘cure’ when remission is meant. Care should address pill burden, and counselling should address sex, substances, exercise, and nutrition.

The current state and future direction of childcare for cancer patients: a narrative review.

One in four patients diagnosed with cancer are parents to dependent children. For these patients, childcare services are needed to overcome the time demands of cancer treatment. Despite the childcare support needs and its potential impact on treatment outcomes, targeted childcare services for cancer patients remain limited. This review highlights the state of childcare services and strategies to address the current chasm in childcare for parents diagnosed with cancer. A comprehensive search of PubMed, Google Scholar, and Embase was conducted and 77 studies in the English Language on Childcare services for parents with cancer published between January 1990 and May 2024 were identified and reviewed. The burden of cancer diagnosis and cancer treatment imposes physical, psychological, financial, and time constraints on cancer patients with young dependents. Many cancer patients with children miss treatment appointments and encounter treatment delays due to challenges with childcare. Limited access to childcare is further exacerbated by the financial and time toxicities of cancer and unconventional treatment needs such as emergency department visits, fatigue, and other complications of cancer treatment. So far, only one cancer-center-linked childcare program exists in the U.S., highlighting the scale of unmet need for childcare support in cancer patients. and relevance. Providing non-traditional childcare services, home-based or hospital-based childcare structures, and financial assistance through medical institutions, professional organizations, insurance payers, and government-funded programs could bridge the current gap in childcare needs for parents with a cancer diagnosis.