RESUMEN
BACKGROUND: Every advanced cancer diagnosis brings enormous challenges to patients and their relatives on numerous levels: be it physical, practical, social challenges, or on a more personal level. While specific aspects have been researched before, an overarching approach is lacking. AIM: To understand the lived experiences of people with advanced cancer, to identify gaps along the cancer care continuum, to identify potential opportunities for meaningful interventions and to develop a theoretical framework for practitioners and researchers. DESIGN: A qualitative study using in-depth interviews with patients, relatives, and care professionals. Interviews were transcribed verbatim and analysed using a conventional content analysis. SETTING/PARTICIPANTS: Fifty-four interviews with 17 patients from a university oncology department and palliative care service, 15 relatives and 22 care professionals from physicians to funeral directors. All interviewees were recruited by a German university hospital. RESULTS: We developed a novel model describing the diagnosis with advanced cancer as a highly disruptive experience that threatens to challenge the integrity of personhood in cancer patients through four areas: communication, knowledge, relationships, and confidence. We were able to identify factors leading to disintegration in these areas and factors supporting a restoration of integrity of personhood. CONCLUSIONS: The developed model provides a more thorough understanding of patients lived experiences. It can help to develop new interventions along the cancer care continuum to support patients in the complex challenges they face. These interventions should focus on supporting the integrity of personhood.
RESUMEN
BACKGROUND: The differential diagnosis between patients with celiac disease (CD) and non-celiac gluten sensitivity (NCGS) is difficult when a gluten-free diet (GFD) has been initiated before the diagnostic work-up. Isolated increases in TCRγδ+ and celiac lymphogram (increased TCRγδ+ plus decreased CD3-) may enable differential diagnosis in this challenging clinical setting. This study evaluated: (1) the accuracy of %TCRγδ+ and celiac lymphogram for diagnosing CD before and after GFD and for differentiation with NCGS; (2) TCRγδ+ kinetics at baseline and after starting GFD in both CD and NCGS. METHODS: The inclusion criteria were patients with CD (n = 104), NCGS (n = 37), and healthy volunteers (n = 18). An intestinal biopsy for intraepithelial lymphogram by flow cytometry was performed at baseline and after GFD. The optimal cutoff for CD diagnostic accuracy was established by maximizing the Youden index and via logistic regression. RESULTS: %TCRγδ+ showed better diagnostic accuracy than celiac lymphogram for identifying CD before and after GFD initiation. With a cutoff > 13.31, the accuracy for diagnosing CD in patients under GFD was 0.88 [0.80-0.93], whereas the accuracy for diagnosing NCGS (%TCRγδ+ ≤ 13.31) was 0.84 [0.76-0.89]. The percentage of TCRγδ+ cells showed differential kinetics between CD (baseline 22.7% [IQR, 16.4-33.6] vs. after GFD 26.4% [IQR, 17.8-36.8]; p = 0.026) and NCGS (baseline 9.4% [IQR, 4.1-14.6] vs. after GFD 6.4% [IQR, 3.2-11]; p = 0.022). CONCLUSION: TCRγδ+ T cell assessment accurately diagnoses CD before and after a GFD. Increased TCRγδ+ was maintained in the long term after GFD in CD but not in NCGS. Altogether, this suggests the potential usefulness of this marker for the differential diagnosis of these two entities in patients on a GFD.
Asunto(s)
Biomarcadores , Enfermedad Celíaca , Dieta Sin Gluten , Glútenes , Receptores de Antígenos de Linfocitos T gamma-delta , Humanos , Enfermedad Celíaca/diagnóstico , Enfermedad Celíaca/dietoterapia , Enfermedad Celíaca/inmunología , Femenino , Diagnóstico Diferencial , Masculino , Adulto , Glútenes/inmunología , Persona de Mediana Edad , Receptores de Antígenos de Linfocitos T gamma-delta/metabolismo , Linfocitos T/inmunología , Adulto Joven , Linfocitos Intraepiteliales/inmunologíaRESUMEN
Background: Many people want to die at home, but it is often not possible because they do not share their wishes with family members. This study was conducted to find out the extent to which patients with advanced urological malignancies had wishes regarding their final stage of life, made arrangements accordingly, and communicated their wishes to relatives and health care professionals. Methods: We conducted a survey among advanced urological tumor patients during their clinic visit at a German university hospital using a 31-item questionnaire. Inclusion criteria were metastatic or irresectable prostate cancer, urothelial carcinoma, or renal cell carcinoma. Results: In total, 88 patients (76 male, 12 female) completed the questionnaire, and 62 of those respondents (70%) had received their tumor diagnosis within the past 5 years. Symptoms were reported by 80%, and 18% described five or more symptoms. The majority (88%) stated that they had thought about their preferred place of death but 58% had not informed anyone about it. The preference for a hospice as the place of death correlated statistically significantly with the absence of a domestic partnership (p = 0.001) or marriage (p < 0.001) and with a high number of symptoms (≥5; p = 0.009). However, 73% had not talked with their urological oncologist about care options in case their health deteriorated though 36% of those were interested in having a conversation about it. Conclusions: Our results showed that 9 out of 10 patients reflected on their preferred place of death but only a few discussed it with anyone. Based on this finding, physicians and healthcare staff should initiate discussions about early care planning so that patients in incurable situations can express their wishes regarding their preferred place of death.
Asunto(s)
Carcinoma de Células Transicionales , Neoplasias Renales , Cuidado Terminal , Neoplasias de la Vejiga Urinaria , Femenino , Humanos , Masculino , Neoplasias Renales/terapia , Centros de Atención Terciaria , Neoplasias de la Vejiga Urinaria/terapiaRESUMEN
OBJECTIVES: Advance care discussions are a useful communication tools for medical preferences and beneficial for shared decision-making processes in hospital settings. The present study developed the first screening tool for need for advance care planning (ACP). METHODS: In phase 1 (n=92), items were evaluated using feasibility analysis and item reduction. In phase 2 (n=201), reduced screening items were analysed for predictive value of need for ACP. Statistical analysis included receiver-operating characteristics analysis (area under the curve>0.80), optimal cut-off based on sensitivity and specificity, interpretation of OR and construct validity using correlation with death anxiety, communication avoidance within families and trust based on the relationship with the treating physician. RESULTS: Participants in both phases were approximately 60 years old with non-curative prognosis. After item reduction, predictive values of four possible items with good item difficulty and discrimination were compared for mild, moderate and great levels of death anxiety. A two-item combination of I am burdened by thoughts of an unfavourable course of the disease and I am burdened by the feeling of being ill-prepared for the end of life showed best prediction of death anxiety and communication avoidance. Clinical cut-off at sum-score ≥6 was of high sensitivity (95%) and specificity (81%). Previous use of social support and readiness for ACP was related to higher chance of interest in ACP. CONCLUSION: Screening for need of ACP is possible with two objective items and one subjective item. Positive screening therefore indicates when to offer ACP discussions and provides routine estimation of ACP need in clinical practice.
RESUMEN
BACKGROUND: About half of people living with dementia have not received a diagnosis, delaying access to treatment, education, and support. We previously developed a tool, eRADAR, which uses information in the electronic health record (EHR) to identify patients who may have undiagnosed dementia. This paper provides the protocol for an embedded, pragmatic clinical trial (ePCT) implementing eRADAR in two healthcare systems to determine whether an intervention using eRADAR increases dementia diagnosis rates and to examine the benefits and harms experienced by patients and other stakeholders. METHODS: We will conduct an ePCT within an integrated healthcare system and replicate it in an urban academic medical center. At primary care clinics serving about 27,000 patients age 65 and above, we will randomize primary care providers (PCPs) to have their patients with high eRADAR scores receive targeted outreach (intervention) or usual care. Intervention patients will be offered a "brain health" assessment visit with a clinical research interventionist mirroring existing roles within the healthcare systems. The interventionist will make follow-up recommendations to PCPs and offer support to newly-diagnosed patients. Patients with high eRADAR scores in both study arms will be followed to identify new diagnoses of dementia in the EHR (primary outcome). Secondary outcomes include healthcare utilization from the EHR and patient, family member and clinician satisfaction assessed through surveys and interviews. CONCLUSION: If this pragmatic trial is successful, the eRADAR tool and intervention could be adopted by other healthcare systems, potentially improving dementia detection, patient care and quality of life.
Asunto(s)
Enfermedad de Alzheimer , Prestación Integrada de Atención de Salud , Demencia , Anciano , Humanos , Enfermedad de Alzheimer/diagnóstico , Enfermedad de Alzheimer/terapia , Encéfalo , Demencia/diagnóstico , Demencia/terapia , Registros Electrónicos de Salud , Calidad de Vida , Ensayos Clínicos Pragmáticos como Asunto , AlgoritmosRESUMEN
BACKGROUND: Patients with advanced or metastatic skin cancer have a limited life expectancy and the majority die as a result of the tumor despite modern treatment options. The preferences of these patients concerning care during their last phase of life are currently unknown. PATIENTS AND METHODS: 150 patients with advanced skin cancer (AJCC/UICC stage III or IV) were interviewed using a structured questionnaire. RESULTS: 75% of the respondents wished to die in their domestic environment, although a more advanced tumor stage and increased reflection upon end-of-life care lead away from this wish. However, only 42% reported having communicated this wish to someone else. 55% of the respondents had completed advance directives, while younger patients did this significantly less often (95% CI: 0.11-0.56; p = 0.001). The majority of patients (62%) would like to have discussions about possibilities for end-of-life care with the attending dermato-oncologist. CONCLUSIONS: Although the moment of death is unpredictable, early initiation of end-of-life advance care planning appears prudent. The attending dermato-oncologists should take the initiative to raise the subject with their patients during routine control visits. In this context, it may be useful to present available care options to patients and relatives and to design strategies for the event of deteriorating health.
RESUMEN
The integrin CD49a marks highly cytotoxic epidermal-tissue-resident memory (TRM) cells, but their differentiation from circulating populations remains poorly defined. We demonstrate enrichment of RUNT family transcription-factor-binding motifs in human epidermal CD8+CD103+CD49a+ TRM cells, paralleled by high RUNX2 and RUNX3 protein expression. Sequencing of paired skin and blood samples revealed clonal overlap between epidermal CD8+CD103+CD49a+ TRM cells and circulating memory CD8+CD45RA-CD62L+ T cells. In vitro stimulation of circulating CD8+CD45RA-CD62L+ T cells with IL-15 and TGF-ß induced CD49a expression and cytotoxic transcriptional profiles in a RUNX2- and RUNX3-dependent manner. We therefore identified a reservoir of circulating cells with cytotoxic TRM potential. In melanoma patients, high RUNX2, but not RUNX3, transcription correlated with a cytotoxic CD8+CD103+CD49a+ TRM cell signature and improved patient survival. Together, our results indicate that combined RUNX2 and RUNX3 activity promotes the differentiation of cytotoxic CD8+CD103+CD49a+ TRM cells, providing immunosurveillance of infected and malignant cells.
Asunto(s)
Linfocitos T CD8-positivos , Melanoma , Humanos , Linfocitos T CD8-positivos/metabolismo , Integrina alfa1/metabolismo , Integrinas/metabolismo , Subunidad alfa 1 del Factor de Unión al Sitio Principal/genética , Subunidad alfa 1 del Factor de Unión al Sitio Principal/metabolismo , Memoria Inmunológica , Antígenos Comunes de Leucocito/metabolismo , Melanoma/metabolismoRESUMEN
Innate lymphoid cells (ILCs) are considered innate counterparts of adaptive T cells; however, their common and unique transcriptional signatures in pediatric inflammatory bowel disease (pIBD) are largely unknown. Here, we report a dysregulated colonic ILC composition in pIBD colitis that correlates with inflammatory activity, including accumulation of naive-like CD45RA+CD62L- ILCs. Weighted gene co-expression network analysis (WGCNA) reveals modules of genes that are shared or unique across innate and adaptive lymphocytes. Shared modules include genes associated with activation/tissue residency, naivety/quiescence, and antigen presentation. Lastly, nearest-neighbor-based analysis facilitates the identification of "most inflamed" and "least inflamed" lymphocytes in pIBD colon with unique transcriptional signatures. Our study reveals shared and unique transcriptional signatures of colonic ILCs and T cells in pIBD. We also provide insight into the transcriptional regulation of colonic inflammation, deepening our understanding of the potential mechanisms involved in pIBD.
Asunto(s)
Colitis , Enfermedades Inflamatorias del Intestino , Humanos , Niño , Linfocitos , Inmunidad Innata/genética , Colitis/genética , Linfocitos TRESUMEN
BACKGROUND: There is a research gap regarding safety concerns of patients at the end of life. The aim of this study was, therefore, to explore whether patients under specialist community palliative care feel safe at home and which factors affect the perceived safety. Furthermore, we investigated if perception of safety is associated with different aspects of subsequent care. METHODS: Using a standardized questionnaire, a cross-sectional survey was conducted among 100 specialist community palliative care patients. Logistic regression was used to examine the strength of the association between clinical and socio-demographic variables and the perception of safety. After a 6-month follow-up period, we analyzed differences in various care-related outcomes between patients with unaffected and impaired perceptions of safety. RESULTS: In our study, one in five patients receiving specialist community palliative care expressed safety concerns. Subdomains of safety that were reported most frequently were physical disability (60%), physical symptoms (30%), psychological symptoms (26%), and side effects/complications of drug therapy (19%). Of the participants surveyed after the initial COVID-19 lockdown, 35.1% reported that they felt their safety had been adversely affected by the pandemic. Compromised safety perception was associated with higher levels of palliative care-related problems, and proximity to death. CONCLUSIONS: Our study uncovered relevant safety concerns of palliative care patients receiving specialist community palliative care. The insights gained into patient-reported problems may help healthcare professionals to identify situations where patients feel unsafe. Further research should address primary and secondary prevention measures to improve the quality of end-of-life care in the home environment.
Asunto(s)
COVID-19 , Cuidados Paliativos , Humanos , Cuidados Paliativos/psicología , Estudios Transversales , Control de Enfermedades Transmisibles , PercepciónRESUMEN
Objective: Breaking bad news in neonatology is a frequent and difficult challenge. Although there are guidelines for communicating with parents in pediatrics and neonatology, the specific framework for breaking bad news in neonatology has not been studied in more detail. Therefore, we aimed to identify determinants that are important for successful managing breaking bad news in neonatology from professionals' perspective and to develop a conceptual framework that underpins this challenging task. Methods: We conducted seventeen semi-structured interviews with senior neonatologists of six perinatal centers of the highest level of care in Germany. The transcripts were analyzed according to Mayring's method of qualitative content analysis using inductive and deductive coding. Results: Eight determinants of breaking bad news in neonatology could be identified from the interviews. From these, we developed the conceptual framework NEO-SPEAK. The first three determinants, Neonatal prognostic uncertainty, Encounter in (triangular-)partnerships, Organization and teamwork (NEO) are directly related to the specific care situation in neonatology, whereas the others, Situational stress, Processuality, Emotional burden, Attention to individuality, Knowledge and experience, play a role for difficult conversations in general, but are subject to special modifications in neonatology (SPEAK). In addition, the results show that the context in neonatology as well as reciprocal effects on the team and the individual level of the physicians are important influencing factors in breaking bad news. Conclusion: On the one hand, the constitutional framework NEO-SPEAK shows which special aspects play a role in neonatology for the delivery of bad news, and on the other hand, it can help to identify and consider these aspects in clinical routine and training. Considering or reinforcing each NEO-SPEAK element when planning or delivering bad news may guide healthcare professionals through communication with parents of critically ill or premature newborns and support the resilience of the caring team.
RESUMEN
OBJECTIVES: The objective of this study is to develop a care pathway for a hospital-based advance care planning service for cancer patients. METHODS: A web-based modified Delphi study consulted an expert panel consisting of a convenience sample of stakeholders including professionals with a special interest in advance care planning as well as a 'public and patient involvement group'. After generating ideas for core elements of a care pathway in the first round, numerical ratings and rankings informed the multi-professional research steering group's decision process eventually resulting in a final pathway. RESULTS: The 41 participants in the Delphi study identified 177 potential core elements of the pathway in the first round. In two further rounds, consensus was reached on a final version of the pathway with 148 elements covering the 10 domains: prerequisites, organisation and coordination, identification and referral, provision of information, information sources, family involvement, advance care planning discussion, documentation, update and quality assurance. CONCLUSION: We propose a care pathway for advance care planning for hospital patients with cancer based on the results of a Delphi study that reached consensus on an implementation strategy. Our study pioneers the standardisation of the process and provides input for further policy and research with the aim of aligning cancer patients' care with their preferences and values.
Asunto(s)
Planificación Anticipada de Atención , Neoplasias , Humanos , Técnica Delphi , Vías Clínicas , Hospitales , Neoplasias/terapiaRESUMEN
BACKGROUND: Previous studies suggested that Interleukin-10 (IL-10) depletion in Crohn's disease (CD) could predict outcome. AIM: To determine IL-10 in blood and at different intestinal locations in patients with active CD and to assess its potential prognostic capacity to identify aggressive CD. METHODS: Twenty-three patients with CD were included. Ulcerative colitis (UC), infectious colitis and healthy individuals acted as controls. Serum and mucosal samples were taken at baseline and 1 month after steroid initiation in CD patients. Patients were classified according to steroid response. Control samples were obtained from different intestinal locations. IL-10 expression was measured with real-time polymerase chain reaction, immunofluorescence (intestine) and ELISA (serum, biopsy cultures' supernatants and tissue homogenates). RESULTS: CD and UC showed an increase in IL-10 messenger RNA (mRNA) versus controls (p < .0001) in mucosa, whereas IL-10 protein secretion was increased in all types of intestinal inflammation (p < .001). No differences in IL-10 mRNA were found in CD at baseline regarding steroid response, but levels decreased in non-responders versus responders (p = .027) and were restored with rescue therapy. Serum IL-10 was increased in steroid-refractory CD at baseline and after treatment. CONCLUSIONS: Abnormal IL-10 levels in refractory patients in both mucosa and blood have physiopathological relevance and may have potential clinical applications.
Asunto(s)
Colitis Ulcerosa , Enfermedad de Crohn , Colitis Ulcerosa/metabolismo , Enfermedad de Crohn/tratamiento farmacológico , Enfermedad de Crohn/genética , Enfermedad de Crohn/metabolismo , Humanos , Interleucina-10/genética , Interleucina-10/metabolismo , Mucosa Intestinal/metabolismo , ARN Mensajero/genética , Esteroides/uso terapéuticoRESUMEN
BACKGROUND: Heart failure has high mortality and is linked to substantial burden for patients, carers and health care systems. Patients with chronic heart failure frequently experience recurrent hospitalisations peaking at the end of life, but most prefer to avoid hospital. The drivers of hospitalisations are not well understood. AIM: We aimed to synthesise the evidence on factors associated with all-cause and heart failure hospitalisations of patients with advanced chronic heart failure. DESIGN: Systematic review of studies quantitatively evaluating factors associated with all-cause or heart failure hospitalisations in adult patients with advanced chronic heart failure. DATA SOURCES: Five electronic databases were searched from inception to September 2020. Additionally, searches for grey literature, citation searching and hand-searching were performed. We assessed the quality of individual studies using the QualSyst tool. Strength of evidence was determined weighing number, quality and consistency of studies. Findings are reported narratively as pooling was not deemed feasible. RESULTS: In 54 articles, 68 individual, illness-level, service-level and environmental factors were identified. We found high/moderate strength evidence for specialist palliative or hospice care being associated with reduced risk of all-cause and heart failure hospitalisations, respectively. Based on high strength evidence, we further identified black/non-white ethnicity as a risk factor for all-cause hospitalisations. CONCLUSION: Efforts to integrate hospice and specialist palliative services into care may reduce avoidable hospitalisations in advanced heart failure. Inequalities in end-of-life care in terms of race/ethnicity should be addressed. Further research should investigate the causality of the relationships identified here.
Asunto(s)
Insuficiencia Cardíaca , Cuidado Terminal , Adulto , Humanos , Hospitalización , Insuficiencia Cardíaca/terapia , Enfermedad Crónica , Muerte , Cuidados PaliativosRESUMEN
BACKGROUND: We recently estimated that 36.9% of Alzheimer's disease and related dementias (ADRD) cases in the US may be attributable to modifiable risk factors, but it is not known whether national estimates generalize to specific states or regions. OBJECTIVE: To compare national estimates of modifiable risk factors of ADRD to California, overall and by sex and race/ethnicity, and to estimate number of cases potentially preventable by reducing the prevalence of key risk factors by 25%. METHODS: Adults ≥18 years who participated in the Behavioral Risk Factor Surveillance Survey in California (nâ=â9,836) and the US (nâ=â378,615). We calculated population attributable risks (PARs) for eight risk factors (physical inactivity, current smoking, depression, low education, diabetes mellitus, midlife obesity, midlife hypertension, and hearing loss) and compared estimates in California and the U.S. RESULTS: In California, overall, 28.9% of ADRD cases were potentially attributable to the combination of risk factors, compared to 36.9% in the U.S. The top three risk factors were the same in California and the U.S., although their relative importance differed (low education [CA:14.9%; U.S.:11.7% ], midlife obesity [CA:14.9%; U.S.:17.7% ], and physical inactivity [CA:10.3%; U.S.:11.8% ]). The number of ADRD cases attributable to the combined risk factors was 199,246 in California and 2,287,683 in the U.S. If the combined risk factors were reduced by 25%, we could potentially prevent more than 40,000 cases in California and 445,000 cases in the U.S. CONCLUSION: Our findings highlight the importance of examining risk factors of ADRD regionally, and within sex and race/ethnic groups to tailor dementia risk reduction strategies.
Asunto(s)
Enfermedad de Alzheimer , Diabetes Mellitus , Hipertensión , Enfermedad de Alzheimer/etiología , Diabetes Mellitus/epidemiología , Humanos , Hipertensión/epidemiología , Obesidad/complicaciones , Obesidad/epidemiología , Factores de Riesgo , Estados Unidos/epidemiologíaRESUMEN
Importance: Previous estimates suggested that 1 in 3 cases of Alzheimer disease and related dementia (ADRDs) in the US are associated with modifiable risk factors, the most prominent being physical inactivity, depression, and smoking. However, these estimates do not account for changes in risk factor prevalence over the past decade and do not consider potential differences by sex or race and ethnicity. Objective: To update estimates of the proportion of ADRDs in the US that are associated with modifiable risk factors and to assess for differences by sex and race and ethnicity. Design, Setting, and Participants: For this cross-sectional study, risk factor prevalence and communality were obtained from the nationally representative US Behavioral Risk Factor Surveillance Survey data from January 2018 to December 2018, and relative risks for each risk factor were extracted from meta-analyses. Data were analyzed from December 2020 to August 2021. Respondents included 378â¯615 noninstitutionalized adults older than 18 years. The number before exclusion was 402â¯410. Approximately 23â¯795 (~6%) had missing values on at least 1 of the variables of interest. Exposures: Physical inactivity, current smoking, depression, low education, diabetes, midlife obesity, midlife hypertension, and hearing loss. Main Outcomes and Measures: Individual and combined population-attributable risks (PARs) associated with ADRDs, accounting for nonindependence between risk factors. Results: Among 378â¯615 individuals, 171â¯161 (weighted 48.7%) were male, and 134â¯693 (weighted 21.1%) were 65 years and older. Race and ethnicity data were self-reported and defined by the US Behavioral Risk Factor Surveillance System Data; 6671 participants (weighted 0.9%) were American Indian and Alaska Native, 8043 (weighted 5.1%) were Asian, 29â¯956 (weighted 11.7%) were Black, 28â¯042 (weighted 16.0%) were Hispanic (any race), and 294â¯394 (weighted 64.3%) were White. Approximately 1 in 3 of ADRD cases (36.9%) in the US were associated with 8 modifiable risk factors, the most prominent of which were midlife obesity (17.7%; 95% CI, 17.5-18.0), physical inactivity (11.8%; 95% CI, 11.7-11.9), and low educational attainment (11.7%; 95% CI, 11.5-12.0). Combined PARs were higher in men (35.9%) than women (30.1%) and differed by race and ethnicity: American Indian and Alaska Native individuals, 39%; Asian individuals, 16%; Black individuals, 40%; Hispanic individuals (any race), 34%; and White individuals, 29%. The most prominent modifiable risk factors regardless of sex were midlife obesity for American Indian and Alaska Native individuals, Black individuals, and White individuals; low education for Hispanic individuals; and physical inactivity for Asian individuals. Conclusions and Relevance: The findings suggest that risk factors associated with ADRDs have changed over the past decade and differ based on sex and race and ethnicity. Alzheimer risk reduction strategies may be more effective if they target higher-risk groups and consider current risk factor profiles.
Asunto(s)
Enfermedad de Alzheimer , Etnicidad , Adulto , Enfermedad de Alzheimer/epidemiología , Estudios Transversales , Femenino , Humanos , Masculino , Obesidad/epidemiología , Factores de Riesgo , Estados Unidos/epidemiologíaRESUMEN
Parkinson's disease (PD) is a chronic condition that considerably impacts the perception of quality of life (QoL) in both patients and their caregivers. Modern therapeutic approaches and social efforts strive at maintaining and promoting QoL. It has emerged as a fundamental parameter for clinical follow-up and poses one of the most important endpoints in scientific and economic evaluations of new care models. It is therefore of utmost importance to grasp concepts of QoL in a meaningful way. However, when taking a look at the origin of our modern understanding of QoL and existing methods for its measurement in PD patients, some aspects seem to lack sufficient appreciation. This article elaborates on how the perception of health and QoL have changed over time and discuss whether current understandings of both are reflected in the most commonly applied assessment methods for people with PD.
RESUMEN
INTRODUCTION: Increased patient activation is associated with improved health outcomes; however, little is known about patient activation in people with end-stage kidney disease at the start of their dialysis journey. This study aimed to measure activation status changes over the first 4 months of dialysis. METHODS: Prospective, longitudinal, and observational study. Incident patients initiating dialysis at 25 in-center hemodialysis and 17 home dialysis programs across three US states managed by the same dialysis provider completed the 13-item Patient Activation Measure (PAM-13) survey at baseline (month 1 after commencement of dialysis) and follow-up (month 4). The survey yields a score (0-100) that corresponds to four levels (1-4), with higher scores or levels indicating higher activation. FINDINGS: One hundred eighty-two participants (139 center, 43 home) completed both baseline and follow-up surveys. Mean age was 60 ± 15 years, 40% female. Mean PAM-13 scores were 65.1 ± 16.8 and 64.8 ± 17.8 at baseline and follow-up, respectively; mean intraindividual change: -0.3 ± 17.3. The proportions of patients at levels 1-4 at baseline were 11%, 23%, 35%, and 31% respectively. At follow-up, 50%, 64%, 52%, and 37% of participants at levels 1-4, respectively, changed to a different PAM level (Spearman correlation = 0.47; p < 0.001). Home dialysis was associated with higher PAM scores when compared to in-center hemodialysis in multivariable analyses, adjusted for sociodemographic variables, comorbidities, and predialysis nephrology care (ß = 5.74, 95% confidence intervals [CI]: 0.11-11.37 and 9.02, 95% CI: 3.03-15.02, at baseline and follow-up, respectively). DISCUSSION: Although aggregated group scores and levels remained stable, intra-individual patient activation changed significantly during the first 4 months of dialysis. This novel finding is foundational to future projects aiming to design interventions to improve patient activation.
Asunto(s)
Fallo Renal Crónico , Diálisis Renal , Anciano , Femenino , Hemodiálisis en el Domicilio , Humanos , Fallo Renal Crónico/terapia , Masculino , Persona de Mediana Edad , Participación del Paciente , Estudios ProspectivosRESUMEN
Innate lymphoid cells (ILCs) are highly plastic and predominantly mucosal tissue-resident cells that contribute to both homeostasis and inflammation depending on the microenvironment. The discovery of naïve-like ILCs suggests an ILC differentiation process that is akin to naïve T cell differentiation. Delineating the mechanisms that underlie ILC differentiation in tissues is crucial for understanding ILC biology in health and disease. Here, we showed that tonsillar ILCs expressing CD45RA lacked proliferative activity, indicative of cellular quiescence. CD62L distinguished two subsets of CD45RA+ ILCs. CD45RA+CD62L+ ILCs (CD62L+ ILCs) resembled circulating naïve ILCs because they lacked the transcriptional, metabolic, epigenetic, and cytokine production signatures of differentiated ILCs. CD45RA+CD62L- ILCs (CD62L- ILCs) were epigenetically similar to CD62L+ ILCs but showed a transcriptional, metabolic, and cytokine production signature that was more akin to differentiated ILCs. CD62L+ and CD62L- ILCs contained uni- and multipotent precursors of ILC1s/NK cells and ILC3s. Differentiation of CD62L+ and CD62L- ILCs led to metabolic reprogramming including up-regulation of genes associated with glycolysis, which was needed for their effector functions after differentiation. CD62L- ILCs with preferential differentiation capacity toward IL-22-producing ILC3s accumulated in the inflamed mucosa of patients with inflammatory bowel disease. These data suggested distinct differentiation potential of CD62L+ and CD62L- ILCs between tissue microenvironments and identified that manipulation of these cells is a possible approach to restore tissue-immune homeostasis.