Riding a rollercoaster in a hurricane – researching my own chronic illness

PurposeThis article outlines the experience of conducting Interpretative Phenomenological Analysis research into the chronic illness of Inflammatory Bowel Disease, an incurable condition of the gastro-intestinal tract which results in numerous physically and psychologically symptoms that are difficult to live with, by a researcher who shares the same condition. It considers the complex nature of researcher positioning from a nuanced, relational rather than binary insider/outsider position (Berger, 2015; Hayfield and Huxley, 2015). Additionally, the importance of reflexivity when conducting such personal, reciprocal qualitative research is brought to life, illustrating how such reflexivity deepens the relationship to the research, increases understanding of the interpretations and in turn its validity adds to the trustworthiness of both the endeavour and the written account (Etherington, 2007; Oakley, 2016).Design/methodology/approachConducting research into a medical condition that the researcher also experiences brings its own particular challenges (Hofmann and Barker, 2017). When the chosen methodology is Interpretative Phenomenological Analysis, with its in-depth, relational nature, those challenges intensify (Smith, 2009).FindingsUsing researcher journal extracts, the lived experience of researching whilst experiencing a chronic illness is explored. This includes the psychological impact of experiencing deep empathy for others living with IBD, managing the impact of increased disease knowledge, researching through fatigue and experiencing the claustrophobia of living with and researching one's own condition.Originality/valueFinally, tactics for surviving such research are provided in a bid to enable researchers and supervisors embarking on similar projects, to successfully manage the research rollercoaster ride even when it's in the middle of a Hurricane.

Repetitive Trans Spinal Magnetic Stimulation Improves Functional Recovery and Tissue Repair in Contusive and Penetrating Spinal Cord Injury Models in Rats

Spinal cord injury (SCI) is an incurable condition in which the brain is disconnected partially or completely from the periphery. Mainly, SCIs are traumatic and are due to traffic, domestic or sport accidents. To date, SCIs are incurable and, most of the time, leave the patients with a permanent loss of sensitive and motor functions. Therefore, for several decades, researchers have tried to develop treatments to cure SCI. Among them, recently, our lab has demonstrated that, in mice, repetitive trans-spinal magnetic stimulation (rTSMS) can, after SCI, modulate the lesion scar and can induce functional locomotor recovery non-invasively. These results are promising; however, before we can translate them to humans, it is important to reproduce them in a more clinically relevant model. Indeed, SCIs do not lead to the same cellular events in mice and humans. In particular, SCIs in humans induce the formation of cystic cavities. That is why we propose here to validate the effects of rTSMS in a rat animal model in which SCI leads to the formation of cystic cavities after penetrating and contusive SCI. To do so, several techniques, including immunohistochemical, behavioral and MRI, were performed. Our results demonstrate that rTSMS, in both SCI models, modulates the lesion scar by decreasing the formation of cystic cavities and by improving axonal survival. Moreover, rTSMS, in both models, enhances functional locomotor recovery. Altogether, our study describes that rTSMS exerts positive effects after SCI in rats. This study is a further step towards the use of this treatment in humans.

Fostering medical staff reflection on the technological alienation of parents in the NICU

We describe a case of parents refusing a tracheostomy for an otherwise healthy newborn. The refusal was not honored because permitting the refusal would have violated state law, which required a child to have a qualifying condition (e.g. a terminal diagnosis, permanent unconsciousness, incurable condition with severe suffering) to remove or withhold life-sustaining treatment. However, this case strained the relationship between the parents and medical staff, who worried about sending the newborn home with a tracheostomy where she was not wanted. While many ethical issues arise in treatment refusal cases like this, we focus on the opportunity for ethicists to help the medical staff reflect on the technological alienation of the parents, which may help foster empathy, reduce moral distress, and strengthen the quality of the doctor-parent-patient triad.

Repetitive Trans Spinal Magnetic Stimulation Improves Functional Recovery and Tissue Repair in Contusive and Penetrating Spinal Cord Injury Models in Rats

Spinal cord injury (SCI) is an incurable condition in which the brain is disconnected partially or completely from the periphery. Mainly SCI are traumatic and are due to traffic, domestic or sport accidents. To date SCI are incurable and let, most of the time, the patients with a permanent loss of sensitive and motor functions. Therefore, since several decades researchers tried to develop treatments to cure SCI. Among them, recently, our lab have demonstrated that in mice, repetitive trans-spinal magnetic stimulation (rTSMS) can, after SCI, modulate the lesion scar and can induce functional locomotor recovery non-invasively. These results are promising, however before to translate them to Humans it is important to reproduce them in a more clinically relevant model. Indeed, SCI do not lead to the same cellular events in mice and Humans. In particular, SCI in Humans induce the formation of cystic cavities. That is why we propose here to validate the effects of rTSMS in rat, animal model in which SCI lead to the formation of cystic cavities, after penetrating and contusive SCI. To do so, several techniques including immunohistochemical, behavioral and MRI have been performed. Our results demonstrate that rTSMS, in both SCI models, modulates the lesion scar by decreasing the formation of cystic cavities and by improving axonal survival. Moreover, rTSMS, in both models, enhances functional locomotor recovery. Altogether, our study describes that rTSMS exerts positive effects after SCI in rats. This study is a further step towards the use of this treatment in Humans.

The Role of Regulatory T Cells in Pulmonary Arterial Hypertension

Pulmonary arterial hypertension (PAH) is a chronic, incurable condition characterized by pulmonary vascular remodeling, perivascular inflammation, and right heart failure. Regulatory T cells (Tregs) stave off autoimmunity, and there is increasing evidence for their compromised activity in the inflammatory milieu of PAH. Abnormal Treg function is strongly correlated with a predisposition to PAH in animals and patients. Athymic Treg-depleted rats treated with SU5416, an agent causing pulmonary vascular injury, develop PAH, which is prevented by infusing missing CD4+CD25highFOXP3+ Tregs. Abnormal Treg activity may also explain why PAH disproportionately affects women more than men. This mini review focuses on the role of Tregs in PAH with a special view to sexual dimorphism and the future promise of Treg therapy.

Breast Cancer with Bone Metastasis: Molecular Insights and Clinical Management

Despite the remarkable advances in the diagnosis and treatment of breast cancer patients, the presence or development of metastasis remains an incurable condition. Bone is one of the most frequent sites of distant dissemination and negatively impacts on patient’s survival and overall frailty. The interplay between tumor cells and the bone microenvironment induces bone destruction and tumor progression. To date, the clinical management of bone metastatic breast cancer encompasses anti-tumor systemic therapies along with bone-targeting agents, aimed at slowing bone resorption to reduce the risk of skeletal-related events. However, their effect on patients’ survival remains controversial. Unraveling the biology that governs the interplay between breast neoplastic cells and bone tissue would provide means for the development of new therapeutic agents. This article outlines the state-of-the art in the characterization and targeting the bone metastasis in breast cancer, focusing on the major clinical and translational studies on this clinically relevant topic.

An across-breed validation study of 46 genetic markers in canine hip dysplasia

Background Canine hip dysplasia (CHD) is a common disease, with a complex genetic background. Dogs with severe CHD sometimes also suffer from osteoarthritis (OA), an inflammatory, often painful and incurable condition. Previous studies have reported breed-specific genetic loci associated with different hip dysplasia and OA phenotypes. However, the independent replication of the known associations within or across breeds has been difficult due to variable phenotype measures, inadequate sample sizes and the existence of population specific variants. Results We execute a validation study of 46 genetic markers in a cohort of nearly 1600 dogs from ten different breeds. We categorize the dogs into cases and controls according to the hip scoring system defined by the Fédération Cynologique Internationale (FCI). We validate 21 different loci associated on fourteen chromosomes. Twenty of these associated with CHD in specific breeds, whereas one locus is unique to the across-breed study. We show that genes involved in the neddylation pathway are enriched among the genes in the validated loci. Neddylation contributes to many cellular functions including inflammation. Conclusions Our study successfully replicates many loci and highlights the complex genetic architecture of CHD. Further characterisation of the associated loci could reveal CHD-relevant genes and pathways for improved understanding of the disease pathogenesis.

Drug Conjugated and Bispecific Antibodies for Multiple Myeloma: Improving Immunotherapies off the Shelf

The impressive improvement of overall survival in multiple myeloma (MM) patients in the last years has been mostly related to the availability of new classes of drugs with different mechanisms of action, including proteasome inhibitors (PI), immunomodulating agents (IMiDs), and monoclonal antibodies. However, even with this increased potence of fire, MM still remains an incurable condition, due to clonal selection and evolution of neoplastic clone. This concept underlines the importance of immunotherapy as one of the most relevant tools to try to eradicate the disease. In line with this concept, active and passive immunotherapies represent the most attractive approach to this aim. Antibody-drug conjugate(s) (ADCs) and bispecific antibodies (BsAbs) include two innovative tools in order to limit neoplastic plasma cell growth or even, if used at the time of the best response, to potentially eradicate the tumoral clone. Following their promising results as single agent for advanced disease, at the recent 62nd ASH meeting, encouraging data of several combinations, particularly of ADC(s) with PI or IMiDs, have been reported, suggesting even better results for patients treated earlier. In this paper, we reviewed the characteristics, mechanism of action, and clinical data available for most relevant ADC(s) and BsAbs.

Metastatic Urothelial Cancer: a rapidly changing treatment landscape

Despite significant progress, metastatic urothelial cancer remains an incurable condition with a limited life expectancy. Platinum-based chemotherapy is still the mainstay of treatment for metastatic disease, but immunotherapy, antibody drug conjugates, and targeted agents have shown encouraging results in several recent practice changing trials. In this review, we discuss the standard of care, recent therapeutic advances, ongoing clinical trials, and future perspectives in metastatic urothelial carcinoma.

Prevention of Type 1 Diabetes: Past Experiences and Future Opportunities

Type 1 diabetes (T1D) results from autoimmune destruction of insulin-producing beta-cells in the pancreas, caused by the interplay of genetic and environmental factors. Despite the introduction of advanced technologies for diabetes management, most patients fail to achieve target glycemic control, and T1D still has a high burden of long-term end-organ complications. Over several decades, multiple clinical trials have attempted to find prevention for T1D in at-risk individuals or to stabilize, ultimately reverse, the disease in those with T1D. To date, T1D remains yet incurable condition; however, recently improved understanding of the natural history of the disease may lead to new strategies to preserve or improve beta-cell function in those at increased risk and T1D patients. This publication aims to provide an overview of past experiences and recent findings in the prevention of T1D.