UNASSIGNED: This study scrutinizes the meaning of deterioration in psychotherapy beyond the widely used statistical definition of reliable symptom increase pre-to-post treatment.
UNASSIGNED: An explanatory sequential mixed-methods multiple case study was conducted, combining quantitative pre-post outcome evaluation of self-reported depression symptoms and qualitative analysis of patients\' interviews. In a Randomized Controlled Study on the treatment of Major Depression, three patients showing reliable increase in symptom severity on the BDI-II pre-to-post therapy were selected. An interpretative phenomenological analysis (IPA) was performed on individual interviews conducted pre-, peri- and post-treatment.
UNASSIGNED: Cross-case outcome experiences were: (1) uncontrollable complaints; (2) remaining questions and uninternalized insights and (3) persisting interpersonal difficulties. Within-case idiosyncratic differences revealed that the statistical classification of \"deterioration\" not necessarily corresponds to a \"deteriorated experience,\" nor univocally indicates unwanted therapy effects. Our findings point at the influences of the patient\'s (lack of) agency in the process, a discrepancy between patients\' expectations and the therapy offer, the therapeutic relationship, interpersonal difficulties, and contextual influences.
UNASSIGNED: The meaning of symptomatic deterioration should be interpreted within a patient\'s idiosyncratic context. The multi-faceted nature of deterioration requires further research to rely on multiple perspectives and mixed methods.

BACKGROUND: Cost-effectiveness analysis (CEA) is a standard tool for evaluating health programs and informing decisions about resource allocation and prioritization. Most CEAs evaluating health interventions in low- and middle-income countries adopt a health sector perspective, accounting for resources funded by international donors and country governments, while often excluding out-of-pocket expenditures and time costs borne by program beneficiaries. Even when patients\' costs are included, a companion analysis focused on the patient perspective is rarely performed. We view this as a missed opportunity.
METHODS: We developed methods for assessing intervention affordability and evaluating whether optimal interventions from the health sector perspective also represent efficient and affordable options for patients. We mapped the five different patterns that a comparison of the perspective results can yield into a practical framework, and we provided guidance for researchers and decision-makers on how to use results from multiple perspectives. To illustrate the methodology, we conducted a CEA of six HIV treatment delivery models in Mozambique. We conducted a Monte Carlo microsimulation with probabilistic sensitivity analysis from both patient and health sector perspectives, generating incremental cost-effectiveness ratios for the treatment approaches. We also calculated annualized patient costs for the treatment approaches, comparing the costs with an affordability threshold. We then compared the cost-effectiveness and affordability results from the two perspectives using the framework we developed.
RESULTS: In this case, the two perspectives did not produce a shared optimal approach for HIV treatment at the willingness-to-pay threshold of 0.3 × Mozambique\'s annual GDP per capita per DALY averted. However, the clinical 6-month antiretroviral drug distribution strategy, which is optimal from the health sector perspective, is efficient and affordable from the patient perspective. All treatment approaches, except clinical 1-month distributions of antiretroviral drugs which were standard before Covid-19, had an annual cost to patients less than the country\'s annual average for out-of-pocket health expenditures.
CONCLUSIONS: Including a patient perspective in CEAs and explicitly considering affordability offers decision-makers additional insights either by confirming that the optimal strategy from the health sector perspective is also efficient and affordable from the patient perspective or by identifying incongruencies in value or affordability that could affect patient participation.

BACKGROUND: Dementia with Lewy bodies (DLB) is an incurable form of dementia associated with detriments to the daily life of patients and carers from their family. Symptoms of orthostatic hypotension, syncope, and falls are supportive of DLB diagnosis. These symptoms may also be present among people with sick sinus syndrome (SSS), and subsequent pacemaker treatment to manage bradyarrhythmia is associated with improved cognitive function. The prevalence of SSS seems to be higher among people with underlying Lewy body pathology compared to the general age-matched population (5.2% vs. 0.17%). To our knowledge, how people with DLB and their family carers may experience pacemaker treatment to manage bradyarrhythmia has not been previously reported. Therefore, the aim of this study was to explore how people with DLB experience daily life following a pacemaker implant to manage associated symptoms of bradyarrhythmia.
METHODS: A qualitative case study design was used. Two men with DLB and their spouse carers were repeatedly interviewed as a dyad within 1 year following implant of a dual-chamber rate-adaptive (DDD-CLS) pacemaker to manage SSS in the men. Content analysis was used to assess the qualitative interview data collected.
RESULTS: Three categories emerged: (1) gaining control, (2) maintaining a social life, and (3) being influenced by concurrent diseases. Less syncope/falls and remote pacemaker monitoring increased a sense of control in everyday life, while perceived physical and/or cognitive improvements influenced social participation. The men were still affected by concurrent diseases, which continuously influenced each couple\'s daily life.
CONCLUSIONS: Identifying and managing concurrent bradyarrhythmia through a pacemaker implant could improve well-being for people with DLB.

Multiple Sclerosis (MS) is a complex, lifelong disease. Its effects span across different areas of life and vary strongly. In Switzerland, there is an intense discussion on how to optimize quality of care and patient safety. Patients should be more involved in the management of health care to improve the quality of care from the patient\'s perspective and form a more comprehensive perspective. This multiple-case study explores the question of how persons with MS experience and describe functioning related barriers, facilitating factors, and ethically relevant conflicts. To address this from a comprehensive perspective, the MS core set of the International Classification for Functioning, Disability, and Health (ICF) is used as theoretical framework. To explore barriers, facilitators, and relevant ethical issues, different narrative sources were used for thematic analysis and ICF coding: (a) MS transcripts from DIPEx interviews and (b) an autobiographical book of persons living with MS. Insights that were meaningful for daily practice and education were identified: (a) understanding the importance of environmental circumstances based on narrative sources; (b) understanding the importance of a person\'s individual life situation, and the ability to switch perspectives in the medical field; (c) respect for PwMS\' individuality in health care settings; (d) creating meaningful relationships for disease management and treatment, as well as building trust.

Type 1 diabetes is a chronic disease characterized by abnormal metabolism and hyperglycemia due to insulin deficiency. There is a rapid decline in insulin production due to autoimmune destruction of the pancreatic beta cells. Partial remission (honeymoon phase) of type 1 diabetes is common in children and young adults with newly diagnosed type 1 diabetes. There is temporary restoration of beta cell function such that little or no exogenous insulin is required. Stopping insulin therapy soon after an emergency admission requiring intravenous insulin and subsequent subcutaneous insulin therapy can be frightening for both patient and healthcare provider. Affected patients require education and support during this period. This report describes a case of a 28-year-old man who presented to the emergency department with features of type 1 diabetes and diabetic ketoacidosis. He was treated with intravenous fluids and intravenous insulin and discharged on a subcutaneous insulin regimen. Despite testing positive for several types of islet cell autoantibodies, the patient was able to stop insulin therapy within three months of diagnosis. The patient maintained a self-initiated low-carbohydrate diet, regular weight-reducing exercise, and normal glucose levels without the need for insulin therapy. The honeymoon phase of type 1 diabetes, latent autoimmune diabetes, and ketosis-prone type 2 diabetes are discussed as important differential diagnoses.

In many countries, including patients are legally entitled to request copies of their clinical notes. However, this process remains time-consuming and burdensome, and it remains unclear how much of the medical record must be made available. Online access to notes offers a way to overcome these challenges and in around 10 countries worldwide, via secure web-based portals, many patients are now able to read at least some of the narrative reports written by clinicians (\'open notes\'). However, even in countries that have implemented the practice many clinicians have resisted the idea remaining doubtful of the value of opening notes, and anticipating patients will be confused or anxious by what they read. Against this scepticism, a growing body of qualitative and quantitative research reveals that patients derive multiple benefits from reading their notes. We address the contrasting perceptions of this practice innovation, and claim that the divergent views of patients and clinicians can be explained as a case of epistemic injustice. Using a range of evidence, we argue that patients are vulnerable to (oftentimes, non-intentional) epistemic injustice. Nonetheless, we conclude that the marginalisation of patients\' access to their health information exemplifies a form of epistemic exclusion, one with practical and ethical consequences including for patient safety.

Interstitial cystitis/bladder pain syndrome (IC/BPS) patients around the world are all too familiar with the immense stress and anxiety caused by an urgent and frequent need to void, leading to many patients with IC/BPS staying at home in social isolation since they are afraid that they will not find a public toilet when they urgently need it. It is therefore of great concern that for almost two decades the \"sensory\" type of urgency due to intolerable pain or unpleasant sensation as typically experienced by this group of patients has no longer been officially recognized, researched or treated as a symptom of IC/BPS. This official misrepresentation of IC/BPS symptoms needs to be addressed and rectified for the sake of patients and to ensure medical accuracy in research.

The \"Reference Case\" was developed to facilitate comparability among published cost-effectiveness analyses intended to contribute to decisions about the broad allocation of healthcare resources. Although the societal perspective is recommended for Reference Case analyses, empirical estimations rarely adequately represent the patient perspective, and more often, healthcare system or payer perspectives are used. In this commentary, we discuss the evolution of the Reference Case over the past 20 years and how it now needs to further evolve. This should begin with a patient-informed societal perspective. A realignment of the societal perspective to better include patient perspectives in CEA creates a conduit for patient inclusion. Engaging patients to both derive patient-informed value elements and prioritize value elements using stated preference methods will lead to patient inclusion in the societal perspective and a patient-informed Reference Case analysis.

OBJECTIVE: To identify and describe patients\' experiences and care needs throughout the diagnostic phase of an integrated brain cancer pathway.
BACKGROUND: A malignant brain tumour is a devastating diagnosis, which may cause psychical symptoms and cognitive deficits. Studies have shown that the shock of the diagnosis, combined with the multiple symptoms, affects patients\' ability to understand information and express needs of care and support. Unmet needs have been reported within this group of patients; however, the experiences and care needs of patients going through the diagnostic phase of a standardised integrated brain cancer pathway have not previously been explored.
METHODS: A case study design was used to provide detailed information of the complex needs of patients being diagnosed with a malignant brain tumour.
METHODS: Research interviews and direct participant observation of four patients during hospital admission, brain surgery and discharge were conducted in a Danish university hospital. Systematic text condensation was used to analyse the data material.
RESULTS: Four major themes were identified: information needs, balancing hope and reality while trying to perceive the unknown reality of brain cancer, not knowing what to expect and participants\' perceptions of the relationship with the healthcare providers. The analysis revealed that participants were in risk of having unmet information needs and that contextual factors seemed to cause fragmented care that led to feelings of uncertainty and loss of control.
CONCLUSIONS: Brain tumour patients have complex care needs and experience a particular state of vulnerability during the diagnostic phase. Through personal relationships based on trust with skilled healthcare providers, participants experienced an existential recognition and alleviation of emotional distress.
CONCLUSIONS: Patients receiving a brain tumour diagnosis experience unmet care needs in several areas during their hospital stay. There is a need for interventions from healthcare providers.

Significant left main (LM) stem disease is potentially life-threatening and mandates revascularization. This study aimed to assess how patients rate the importance of particular features of coronary artery bypass grafting (CABG) and percutaneous coronary intervention (PCI), how this determines their preference for a particular treatment strategy, and whether particular personality characteristics influence this preference.
In total, 1145 patients who visited the outpatient clinic of the Erasmus Medical Center for stable coronary artery disease were asked to complete a case vignette-questionnaire on a hypothetical significant LM stenosis amenable to PCI or CABG. To assess the individual\'s personality disposition and general distress level, each patient had to complete a set of 3 standardized, validated questionnaires with satisfactory psychometric properties. Overall 89% of patients preferred PCI to CABG. PCI was the preferred strategy despite a higher risk for repeat revascularization and need for more medication. Remarkably, the fact that a risk for repeat revascularization is more common in the PCI group is less important for the patients who opt for PCI. Risk for stroke and bleeding were the most important arguments to opt for PCI over CABG. Type D personality, depression, and anxiety were all associated with a relatively higher preference for CABG as revascularization strategy.
Overall, when given the choice patients seem to have a clear preference for PCI over CABG and consider stroke and bleeding important procedure-related complications. Patients with Type D personality, depression, or anxiety favor CABG.