Sarcoidosis Illuminations on Living During COVID-19: Patient Experiences of Diagnosis, Management, and Survival Before and During the Pandemic.

Background: Inspired by intense challenges encountered by patients and clinicians, we examined the experiences of living with sarcoidosis in three of the hardest impacted English-speaking cities during the early COVID-19 pandemic: London, New Orleans, and New York. Methods: A multi-disciplinary, multi-national research team including 6 patient leaders conducted qualitative investigations with analyses rooted in grounded theory. Recruitment occurred by self-referral through patient advocacy groups. Results: A total of 28 people living with sarcoidosis participated. The majority of patients had multi-system and severe sarcoidosis. Dominant themes were consistent across groups with differences expressed in spirituality and government and health systems. Racial, gender, and able-bodied inequity were voiced regarding healthcare access and intervention, societal interactions, and COVID-19 exposure and contraction. Agreement regarding extreme disruption in care and communication created concern for disability and survival. Concerns of COVID-19 exposure triggering new sarcoidosis cases or exacerbating established sarcoidosis were expressed. Pre-COVID-19 impediments in sarcoidosis healthcare delivery, medical knowledge, and societal burdens were intensified during the pandemic. Conversely, living with sarcoidosis cultivated personal and operational preparedness for navigating the practicalities and uncertainties of the pandemic. Optimism prevailed that knowledge of sarcoidosis, respiratory, and multi-organ diseases could provide pathways for COVID-19-related therapy and support; however, remorse was expressed regarding pandemic circumstances to draw long-awaited attention to multi-organ system and respiratory conditions. Conclusion: Participants expressed concepts warranting infrastructural and scientific attention. This framework reflects pre- and intra-pandemic voiced needs in sarcoidosis and may be an agent of sensitization and strategy for other serious health conditions. A global query into sarcoidosis will be undertaken.

Health-Related Quality of Life (HRQoL) in Sarcoidosis: Diagnosis, Management, and Health Outcomes.

Health-related quality of life (HRQoL), though rarely considered as a primary endpoint in clinical trials, may be the single outcome reflective of patient priorities when living with a health condition. HRQoL is a multi-dimensional concept that reflects the degree to which a health condition interferes with participation in and fulfillment of important life areas. HRQoL is intended to capture the composite degree of physical, physiologic, psychological, and social impairment resulting from symptom burden, patient-perceived disease severity, and treatment side effects. Diminished HRQoL expectedly correlates to worsening disability and death; but interventions addressing HRQoL are linked to increased survival. Sarcoidosis, being a multi-organ system disease, is associated with a diffuse array of manifestations resulting in multiple symptoms, complications, and medication-related side effects that are linked to reduced HRQoL. Diminished HRQoL in sarcoidosis is related to decreased physical function, pain, significant loss of income, absence from work, and strain on personal relationships. Symptom distress can result clearly from a sarcoidosis manifestation (e.g., ocular pain, breathlessness, cough) but may also be non-specific, such as pain or fatigue. More complex, a single non-specific symptom, e.g., fatigue may be directly sarcoidosis-derived (e.g., inflammatory state, neurologic, hormonal, cardiopulmonary), medication-related (e.g., anemia, sleeplessness, weight gain, sub-clinical infection), or an indirect complication (e.g., sleep apnea, physical deconditioning, depression). Identifying and distinguishing underlying causes of impaired HRQoL provides opportunity for treatment strategies that can greatly impact a patient's function, well-being, and disease outcomes. Herein, we present a reference manual that describes the current state of knowledge in sarcoidosis-related HRQoL and distinguish between diverse causes of symptom distress and other influences on sarcoidosis-related HRQoL. We provide tools to assess, investigate, and diagnose compromised HRQoL and its influencers. Strategies to address modifiable HRQoL factors through palliation of symptoms and methods to improve the sarcoidosis health profile are outlined; as well as a proposed research agenda in sarcoidosis-related HRQoL.

Comparison of activity characteristics of the cuneate nucleus and thoracic spinal neurons receiving noxious cardiac and/or somatic inputs in rats.

Previous studies have shown that the gracile nucleus in postsynaptic dorsal column pathway plays an important role in conveying nociceptive information from pelvic visceral organs. The purpose of this study was to compare effects of a noxious cardiac stimulus on neuronal activity in the cuneate nucleus and upper thoracic spinal cord in rats. Extracellular potentials of single neurons in the cuneate nucleus and upper thoracic (T3) spinal cord were recorded in pentobarbital anesthetized, ventilated and paralyzed male rats. To activate cardiac nociceptors, a silicone tube was placed in the pericardial sac over the left ventricle to administer a solution of bradykinin (10 microg/ml, 0.2 ml, 1 min). The number of cuneate neurons responding to intrapericardial bradykinin (IB, 15.6%, 17/109) was significantly less than for T3 neurons (43.2%, 48/111, P<0.05). IB excited 9/17 (52.9%) cuneate neurons and inhibited eight neurons. In contrast, IB excited a significantly higher percentage of responding spinal neurons than those in cuneate nucleus (43/48, 89.6%, P<0.01). The ratio of short latency/long-lasting responses of cuneate neurons to IB (14/3) were significant higher than responses of spinal neurons (26/22, P<0.05). Spontaneous activity (5.5+/-0.7 imp/s), response amplitudes (6.0+/-0.6 imp/s) and durations (83.4+/-10.8 sec) of cuneate neurons excited by IB were significantly less than for spinal neurons (11.5+/-1.3 imp/s, 20.4+/-2.0 imp/s and 104.9+/-7.0 imp/s, P<0.01, P<0.01, P<0.05), respectively. These results indicate that the cuneate nucleus neurons play a relatively minor role in transmission of cardiac nociceptive information in comparison to upper thoracic spinal neurons.

Grandparents raising grandchildren in a US-Mexico border community.

When parents are unwilling or unable to care for their children, more often than not, grandparents step up to assume this task. Although insights into the multifaceted and unique needs of custodial grandparents are emerging, there is little research on how these changes in living circumstances impact the lives of custodial grandparents and the grandchildren in their care. In this exploratory study, the authors examined the circumstances under which grandparents in a border community assumed custodial care of their grandchildren and the factors that contributed to their decision. Through semi-structured interviews with six grandparents and five grandchildren, they also explored how grandparents and grandchildren coped with transition, how grandparents understood and found meaning in their role as caregivers of their grandchildren, how grandchildren viewed their grandparents in their new role, and how their lives and relationships had changed.