An Ethnographic Study of Patient Life Experience in Early-Stage Parkinson's Disease in the United States and Germany.

INTRODUCTION: Existing qualitative research on early-stage Parkinson's disease draws on patients' reported disease experience, aiming to capture the symptoms and impacts most relevant to patients living with the disease. As a complement to this research, the present study investigated the patient experience of early-stage Parkinson's disease from a holistic, ethnographic perspective. We explored the attitudes, beliefs, and social structures that shape how people understand and adapt to life with early-stage Parkinson's disease. METHODS: Researchers interviewed 30 people with early-stage Parkinson's disease, 10 relatives, and 10 neurologists and movement disorder specialists in the USA and Germany. Many of these interviews took place in-person, allowing researchers to spend time in participants' homes and witness their daily lives. A multidisciplinary team of social scientists, clinical researchers, and patient organization representatives led the mixed-methods study design and analysis. In-depth ethnographic interviews yielded qualitative insights, with a quantitative survey following to assess their prevalence in a larger sample of 150 patients. RESULTS: In addition to developing a patient life experience pathway of early-stage Parkinson's disease, we identified five key thematic findings that provide insight into how the clinical features of the disease become meaningful to patients on the context of their daily lives, family relations, and subjective well-being: (1) People with early-stage Parkinson's disease start coming to terms with their disease before receiving a medical diagnosis; (2) Acceptance is not a finalized achievement, but a cyclical process; (3) People with early-stage Parkinson's disease "live in the moment" to make the future more manageable; (4) Slowing disease progression is an important goal driving the actions of people with early-stage Parkinson's; and (5) People with early-stage Parkinson's disease value information that is grounded in lived experience and relevant to their stage of disease progression. CONCLUSION: This holistic, ethnographic approach to patient life experience provided five key thematic findings that complement insights from qualitative and quantitative datasets on early-stage Parkinson's disease. An enhanced understanding of how early-stage Parkinson's symptoms impact patients' health-related quality of life and their broader social lives can help us better understand how patients make decisions about their usage of healthcare services and therapies.

This study aimed to understand the experience of people living with early-stage Parkinson's. In addition to looking at how symptoms impact people's daily lives, this research examined how people think about and give meaning to early-stage Parkinson's. The first step was to conduct interviews with people with early-stage Parkinson's, their relatives, and doctors. These interviews covered topics such as how people with early-stage Parkinson's are eventually diagnosed, where they go for information, and how they approach the future. In the second step recordings and transcripts of the interviews were analyzed in detail. The ideas and themes that emerged from analysis were used to create a picture of how people experience early-stage Parkinson's as part of their broader lives. Researchers identified five key insights: (1) people often begin to come to terms with Parkinson's before being diagnosed; (2) accepting Parkinson's is an ongoing process; (3) people with early-stage Parkinson's value living in the moment; (4) people with early-stage Parkinson's see slowing the worsening of the disease as an important goal; and (5) learning from the first-hand experience of others can be more valuable than scientific information. Ultimately, this research shows that understanding how early-stage Parkinson's fits into people's everyday lives can help researchers, doctors, and patient organizations provide more effective support and care.

The ethnic and racial diversity of patients undergoing coronary artery calcium scanning.

BACKGROUND: While coronary artery calcium (CAC) CAC scanning has become increasingly used as a tool for primary cardiovascular disease prevention, there has been little study regarding its comparative utilization among ethnic and racial minorities. METHODS: We contrasted the temporal trends in the ethnoracial composition for 73,856 out-patients undergoing stress/rest radionuclide myocardial perfusion imaging (MPI) between 1991 and 2020 and 32,906 undergoing CAC scanning between 1998 and 2020. Both groups were divided into those below and above 65 years. Initial medical insurance claims were used to identify which patients self-paid for SPECT-MPI and CAC studies. RESULTS: Among stress-MPI patients <65 years, the prevalence of White patients declined from 85.5% to 54.0% over the temporal span of our study while the prevalence of Blacks increased from 7.2% to 15.1% and that of Hispanics from 2.3 to 21.6%. Increasing ethnoracial diversification was also noted for SPECT-MPI patients ≥65 years. By contrast, over four-fifths of CAC studies were performed in White patients in each temporal period among both younger and older patients. Among CAC patients <65 years, over 95% of studies were self-paid by patients. For CAC patients ≥65 years, nearly two-third of studies were first submitted to Medicare, but there was no difference in the ethnoracial composition in this group versus initial self-paying patients. CONCLUSIONS: While the ethnoracial diversity of patients undergoing SPECT-MPI markedly increased at our Institution over recent decades, CAC scanning has been disproportionately and consistently utilized by self-paying White patients. These findings highlight the need to make CAC scanning more available among ethnoracial minorities.

Evaluation of California Non-Comprehensive Death File Against National Death Index.

The National Death Index (NDI) by the Centers for Disease Control and Prevention and Death Master File (DMF) by Social Security Administration are the two most broadly utilized data files for mortality outcomes in clinical research. NDI's high costs and the elimination of protected death records from California in DMF calls for alternative death files. The recently emerged California Non-Comprehensive Death File (CNDF) serves as an alternative source for vital statistics. This study aims to evaluate the sensitivity and specificity of CNDF compared to NDI. Of 40,724 consented subjects in the Cedars-Sinai Cardiac Imaging Research Registry, 25,836 eligible subjects were queried through the NDI and the CDNF. After exclusion of death records to establish the same temporal and geographic availability of data, NDI identified 5,707 exact matches, while CNDF identified 6,051 death records. CNDF had a sensitivity of 94.3% and specificity of 96.4% compared to NDI exact matches. NDI also produced 581 close matches: all were verified as deaths by CNDF through matching death date and patient identifiers. Combining all NDI death records, CNDF had a sensitivity of 94.8% and specificity of 99.5%. CNDF is a reliable source for obtaining mortality outcomes and providing additional mortality validation. The use of CNDF can aid and replace the use of NDI in the state of California.

Estimating circadian phase in elementary school children: leveraging advances in physiologically informed models of circadian entrainment and wearable devices.

STUDY OBJECTIVES: Examine the ability of a physiologically based mathematical model of human circadian rhythms to predict circadian phase, as measured by salivary dim light melatonin onset (DLMO), in children compared to other proxy measurements of circadian phase (bedtime, sleep midpoint, and wake time). METHODS: As part of an ongoing clinical trial, a sample of 29 elementary school children (mean age: 7.4 ± .97 years) completed 7 days of wrist actigraphy before a lab visit to assess DLMO. Hourly salivary melatonin samples were collected under dim light conditions (<5 lx). Data from actigraphy were used to generate predictions of circadian phase using both a physiologically based circadian limit cycle oscillator mathematical model (Hannay model), and published regression equations that utilize average sleep onset, midpoint, and offset to predict DLMO. Agreement of proxy predictions with measured DLMO were assessed and compared. RESULTS: DLMO predictions using the Hannay model outperformed DLMO predictions based on children's sleep/wake parameters with a Lin's Concordance Correlation Coefficient (LinCCC) of 0.79 compared to 0.41-0.59 for sleep/wake parameters. The mean absolute error was 31 min for the Hannay model compared to 35-38 min for the sleep/wake variables. CONCLUSION: Our findings suggest that sleep/wake behaviors were weak proxies of DLMO phase in children, but mathematical models using data collected from wearable data can be used to improve the accuracy of those predictions. Additional research is needed to better adapt these adult models for use in children. CLINICAL TRIAL: The i Heart Rhythm Project: Healthy Sleep and Behavioral Rhythms for Obesity Prevention https://clinicaltrials.gov/ct2/show/NCT04445740.

Relationship between ischaemia, coronary artery calcium scores, and major adverse cardiovascular events.

AIMS: Positron emission tomography (PET) myocardial perfusion imaging (MPI) is often combined with coronary artery calcium (CAC) scanning, allowing for a combined anatomic and functional assessment. We evaluated the independent prognostic value of quantitative assessment of myocardial perfusion and CAC scores in patients undergoing PET. METHODS AND RESULTS: Consecutive patients who underwent Rb-82 PET with CAC scoring between 2010 and 2018, with follow-up for major adverse cardiovascular events (MACE), were identified. Perfusion was quantified automatically with total perfusion deficit (TPD). Our primary outcome was MACE including all-cause mortality, myocardial infarction (MI), admission for unstable angina, and late revascularization. Associations with MACE were assessed using multivariable Cox models adjusted for age, sex, medical history, and MPI findings including myocardial flow reserve.In total, 2507 patients were included with median age 70. During median follow-up of 3.9 years (interquartile range 2.1-6.1), 594 patients experienced at least one MACE. Increasing CAC and ischaemic TPD were associated with increased MACE, with the highest risk associated with CAC > 1000 [adjusted hazard ratio (HR) 1.67, 95% CI 1.24-2.26] and ischaemic TPD > 10% (adjusted HR 1.80, 95% CI 1.40-2.32). Ischaemic TPD and CAC improved overall patient classification, but ischaemic TPD improved classification of patients who experienced MACE while CAC mostly improved classification of low-risk patients. CONCLUSIONS: Ischaemic TPD and CAC were independently associated with MACE. Combining extent of atherosclerosis and functional measures improves the prediction of MACE risk, with CAC 0 identifying low-risk patients and regional ischaemia identifying high-risk patients in those with CAC > 0.

Value of semiquantitative assessment of high-risk plaque features on coronary CT angiography over stenosis in selection of studies for FFRct.

INTRODUCTION: The degree of stenosis on coronary CT angiography (CCTA) guides referral for CT-derived flow reserve (FFRct). We sought to assess whether semiquantitative assessment of high-risk plaque (HRP) features on CCTA improves selection of studies for FFRct over stenosis assessment alone. METHODS: Per-vessel FFRct was computed in 1,395 vessels of 836 patients undergoing CCTA with 25-99% maximal stenosis. By consensus analysis, stenosis severity was graded as 25-49%, 50-69%, 70-89%, and 90-99%. HRPs including low attenuation plaque (LAP), positive remodeling (PR), and spotty calcification (SC) were assessed in lesions with maximal stenosis. Lesion FFRct was measured distal to the lesion with maximal stenosis, and FFRct<0.80 was defined as abnormal. Association of HRP and abnormal lesion FFRct was evaluated by univariable and multivariable logistic regression models. RESULTS: The frequency of abnormal lesion FFRct increased with increase of stenosis severity across each stenosis category (25-49%:6%; 50-69%:30%; 70-89%:54%; 90-99%:91%, p â€‹< â€‹0.001). Univariable analysis demonstrated that stenosis severity, LAP, and PR were predictive of abnormal lesion FFRct, while SC was not. In multivariable analyses considering stenosis severity, presence of PR, LAP, and PR and/or LAP were independently associated with abnormal FFRct: Odds ratio 1.58, 1.68, and 1.53, respectively (p â€‹< â€‹0.02 for all). The presence of PR and/or LAP increased the frequency of abnormal FFRct with mild stenosis (p â€‹< â€‹0.05) with a similar trend with 70-89% stenosis. The combination of 2 HRP (LAP and PR) identified more lesions with FFR < 0.80 than only 1 HRP. CONCLUSIONS: Semiquantitative visual assessment of high-risk plaque features may improve the selection of studies for FFRct.

Computed tomography angiography-derived extracellular volume fraction predicts early recovery of left ventricular systolic function after transcatheter aortic valve replacement.

AIMS: Recovery of left ventricular ejection fraction (LVEF) after aortic valve replacement has prognostic importance in patients with aortic stenosis (AS). The mechanism by which myocardial fibrosis impacts LVEF recovery in AS is not well characterized. We sought to evaluate the predictive value of extracellular volume fraction (ECV) quantified by cardiac CT angiography (CTA) for LVEF recovery in patients with AS after transcatheter aortic valve replacement (TAVR). METHODS AND RESULTS: In 109 pre-TAVR patients with LVEF <50% at baseline echocardiography, CTA-derived ECV was calculated as the ratio of change in CT attenuation of the myocardium and the left ventricular (LV) blood pool before and after contrast administration. Early LVEF recovery was defined as an absolute increase of ≥10% in LVEF measured by post-TAVR follow-up echocardiography within 6 months of the procedure. Early LVEF recovery was observed in 39 (36%) patients. The absolute increase in LVEF was 17.6 ± 8.8% in the LVEF recovery group and 0.9 ± 5.9% in the no LVEF recovery group (P < 0.001). ECV was significantly lower in patients with LVEF recovery compared with those without LVEF recovery (29.4 ± 6.1% vs. 33.2 ± 7.7%, respectively, P = 0.009). In multivariable analysis, mean pressure gradient across the aortic valve [odds ratio (OR): 1.07, 95% confidence interval (CI): 1.03-1.11, P: 0.001], LV end-diastolic volume (OR: 0.99, 95% CI: 0.98-0.99, P: 0.035), and ECV (OR: 0.92, 95% CI: 0.86-0.99, P: 0.018) were independent predictors of early LVEF recovery. CONCLUSION: Increased myocardial ECV on CTA is associated with impaired LVEF recovery post-TAVR in severe AS patients with impaired LV systolic function.

The value of immunotherapy for survivors of stage IV non-small cell lung cancer: patient perspectives on quality of life.

PURPOSE: The aim of this study was to examine what personally mattered to 24 patients who received immuno-oncology (IO) therapy for stage IV non-small cell lung cancer (NSCLC), as well as their families and friends, to understand how they evaluated their cancer treatments and the determinants of the quality of life (QoL) of long-term survivors. METHODS: Ethnographic research was conducted with 24 patients who had responded to IO (pembrolizumab, nivolumab, atezolizumab, or durvalumab) for stage IV NSCLC, and their families and friends, evenly split among field sites in Denmark, the USA, and the UK. Data were collected using in-depth qualitative interviews, written exercises, and participant observation. Data analysis methods included interpretative phenomenological analysis, coding, and the development of grounded theory. Researchers spent 2 days with participants in their homes and accompanied them on health-related outings. RESULTS: Our findings reveal that long-term survivors on IO experienced their journey in two phases: one in which their cancer had taken over their lives mentally, physically, and spiritually, and another in which their cancer consumed only a part of their everyday lives. Patients who survived longer than their initial prognosis existed in a limbo state in which they were able to achieve some semblance of normalcy in spite of being identified as having a terminal condition. This limbo state impacted their life priorities, decision-making, experience of patient support, and health information-seeking behaviors, all of which shaped their definitions and experience of QoL. CONCLUSIONS: The results of this study, which identify the specific challenges of living in limbo, where patients are able to reclaim a portion of their pre-cancer lives while continuing to wrestle with a terminal prognosis, may inform how cancer research can more effectively define and measure the QoL impacts of IO treatments. Also, they may identify approaches that the cancer community can use to support the needs of patients living in a limbo state. These experiences may not be adequately understood by the cancer community or captured by existing QoL measures, which were designed prior to the emergence of IO and without sufficient incorporation of contextual, patient-driven experience. IMPLICATIONS FOR CANCER SURVIVORS: Increased awareness of the specific experiences that come with long-term survival on IO may direct how resources should be spent for cancer support for patients and their families. Expanding how QoL is evaluated based on patients' lived experiences of IO can reflect a more accurate depiction of the treatment's benefits and harms.

Percutaneous or surgical revascularization is associated with survival benefit in stable coronary artery disease.

AIMS: We assessed the association between early invasive therapy, burden of ischaemia, and survival benefit separately for percutaneous coronary intervention (PCI) and coronary artery bypass grafting (CABG). Ischaemia involving more than 10% of the left ventricular myocardium may identify patients who benefit from revascularization. However, it is not clear whether this association exists with both PCI and CABG. MATERIALS AND RESULTS: Patients who underwent single-photon emission computed tomography (SPECT) myocardial perfusion imaging (MPI) between 1992 and 2012 were identified. Early revascularization was defined as PCI or CABG performed within 90 days of SPECT MPI. The association between early PCI or CABG and all-cause mortality was assessed using a doubly robust, propensity score matching analysis. In total, 54 522 patients were identified, with median follow-up 8.0 years. Early PCI was performed in 2688 patients and early CABG in 1228. In the matched cohorts, early revascularization was associated with improved survival compared to medical therapy in patients with more than 15% ischaemia for both PCI [adjusted hazard ratio (HR) 0.70, P = 0.002] and CABG (adjusted HR 0.73, P = 0.008). CONCLUSION: In this observational analysis, both PCI and CABG were associated with reduced all-cause mortality in the presence of moderate to severe ischaemia after adjusting for factors leading to revascularization. As the threshold for improved outcomes with revascularization was similar for PCI and CABG, our results suggest that decisions for PCI vs. CABG for early revascularization should be determined by coronary anatomy, patient characteristics, and shared decision making, but not by the burden of ischaemia.

Context, evidence and attitude: the case for photography in medical examinations of asylum seekers in the Netherlands.

Can photographs of scars serve as evidence of torture? Amnesty International's Medical Examination Group in the Netherlands (AI-MEG) has, for more than a decade, been photographing torture scars to supplement the testimonies of asylum seekers who have been denied refuge. AI-MEG only intervenes at this point, when asylum seekers face extradition. Proving allegations of torture is of vital importance, as asylum seekers face rising anti-immigrant sentiment in European countries. All victims examined by AI-MEG present a combination of mental, physical and emotional scars. We summarize five cases where AI-MEG used photography in their medical examinations, and consider the ethical role physicians play in helping asylum seekers obtain refuge. Though photographs cannot capture all forms of trauma, as visual documents, they are a compelling form of concrete evidence of torture. In this way, photographs complement verbal testimonies and help doctors and immigration authorities to see and understand physical scars left by various forms of torture. AI-MEG explains in medical terms the connections between the visible late sequelae of torture and victims' testimonies. They then assess whether or not the physical scars are consistent with the forms of torture recounted by victims, using the terminology of the Istanbul Protocol (1999), the United Nations-adopted manual of guidelines that explains how to document torture. This paper outlines the medical examination process and argues for the use of photography as medical evidence on behalf of asylum seekers.