Effective peer-to-peer support for young people with end-stage renal disease: a mixed methods evaluation of Camp COOL

Background

The Camp COOL programme aims to help young Dutch people with end-stage renal disease (ESRD) develop self-management skills. Fellow patients already treated in adult care (hereafter referred to as ‘buddies’) organise the day-to-day program, run the camp, counsel the attendees, and also participate in the activities. The attendees are young people who still have to transfer to adult care. This study aimed to explore the effects of this specific form of peer-to-peer support on the self-management of young people (16–25 years) with ESRD who participated in Camp COOL (CC) (hereafter referred to as ‘participants’).

Methods

A mixed methods research design was employed. Semi-structured interviews (n?=?19) with initiators/staff, participants, and healthcare professionals were conducted. These were combined with retrospective and pre-post surveys among participants (n?=?62), and observations during two camp weeks.

Results

Self-reported effects of participants were: increased self-confidence, more disease-related knowledge, feeling capable of being more responsible and open towards others, and daring to stand up for yourself. According to participants, being a buddy or having one positively affected them. Self-efficacy of attendees and independence of buddies increased, while attendees’ sense of social inclusion decreased (measured as domains of health-related quality of life). The buddy role was a pro-active combination of being supervisor, advisor, and leader.

Conclusions

Camp COOL allowed young people to support each other in adjusting to everyday life with ESRD. Participating in the camp positively influenced self-management in this group. Peer-to-peer support through buddies was much appreciated. Support from young adults was not only beneficial for adolescent attendees, but also for young adult buddies. Paediatric nephrologists are encouraged to refer patients to CC and to facilitate such initiatives. Together with nephrologists in adult care, they could take on a role in selecting buddies.

     

Protein disulfide isomerase acts as an injury response signal that enhances fibrin generation via tissue factor activation

The activation of initiator protein tissue factor (TF) is likely to be a crucial step in the blood coagulation process, which leads to fibrin formation. The stimuli responsible for inducing TF activation are largely undefined. Here we show that the oxidoreductase protein disulfide isomerase (PDI) directly promotes TF-dependent fibrin production during thrombus formation in vivo. After endothelial denudation of mouse carotid arteries, PDI was released at the injury site from adherent platelets and disrupted vessel wall cells. Inhibition of PDI decreased TF-triggered fibrin formation in different in vivo murine models of thrombus formation, as determined by intravital fluorescence microscopy. PDI infusion increased - and, under conditions of decreased platelet adhesion, PDI inhibition reduced - fibrin generation at the injury site, indicating that PDI can directly initiate blood coagulation. In vitro, human platelet-secreted PDI contributed to the activation of cryptic TF on microvesicles (microparticles). Mass spectrometry analyses indicated that part of the extracellular cysteine 209 of TF was constitutively glutathionylated. Mixed disulfide formation contributed to maintaining TF in a state of low functionality. We propose that reduced PDI activates TF by isomerization of a mixed disulfide and a free thiol to an intramolecular disulfide. Our findings suggest that disulfide isomerases can act as injury response signals that trigger the activation of fibrin formation following vessel injury.     

Skin blood flow differentially affects near-infrared spectroscopy-derived measures of muscle oxygen saturation and blood volume at rest and during dynamic leg exercise

The impact of skin blood flow changes on near-infrared spectroscopy (NIRS)-derived measures of muscle oxygen saturation (SmO₂) and blood volume has not been fully established. We measured SmO₂ and total hemoglobin concentration ([tHb]) responses of the right vastus lateralis during rest and dynamic knee extension exercise in ten young, healthy males. The protocol was repeated four times: twice without thigh heating for reliability, and twice with different grades of thigh heating for assessing the impact of cutaneous vasodilation on SmO₂ and Δ[tHb]. The reliability of our SmO₂ and [tHb] measurements was good. Thigh heating at 37 and 42°C caused marked increases in cutaneous vascular conductance (CVC) during rest and exercise (P < 0.001 between each condition), and small increases in SmO₂ during rest (from 69 ± 8% to 71 ± 7% and 73 ± 6%, respectively; P < 0.05 between each condition), but not during exercise (e.g. 1 min exercise: 51 ± 11% vs. 51 ± 11% and 52 ± 11%, respectively; P > 0.05 at all time points). In contrast, heating-induced increases in %CVC_peak were accompanied by increases in [tHb] at rest and during exercise and a decrease in Δ[tHb] during exercise (all P < 0.05). Our findings suggest that NIRS-derived measures of SmO₂ and blood volume are differentially affected by skin blood flow at rest and during exercise. The findings from this study should be considered in NIRS experiments where skin blood flow can change markedly (e.g. high-intensity and/or prolonged exercise).     

Racial and ethnic disparities in health: a view from the South Bronx

This study seeks to understand the perspective of Black and Hispanic/Latino residents of the South Bronx, New York, on the causes of persistent racial and ethnic disparities in health outcomes. In particular, it focuses on how people who live in this community perceive and interact with the health care system. Findings from 9 focus groups with 110 participants revealed a deep and pervasive distrust of the health care system and a sense of being disrespected, exacerbated by difficulties that patients experience in communicating with their providers. The paper suggests how health care institutions might respond to these perceptions.     

Nicotinamide relaxes vascular smooth muscle by inhibiting myosin light chain kinase-dependent signaling pathways: implications for anticancer efficacy

Nicotinamide has been shown to be an effective tumor oxygenator in preclinical studies and is part of a promising clinical protocol for the treatment of cancer of the larynx. It has been known for some time that nicotinamide sensitizes tumors, at least in part, by modulating vascular smooth muscle contraction; however, the cellular target within the smooth muscle cell has yet to be identified. Our previous studies have eliminated targets within several agonist and antagonist signaling pathways in smooth muscle, suggesting that it must act at a point close to the contractile machinery of the cell. The present study investigated the effect of nicotinamide on four key steps responsible for force generation via actin/myosin interaction in the smooth muscle cell: calcium binding to calmodulin, calcium-calmodulin binding to smooth muscle myosin light chain kinase (MLCK) inhibitor peptide 480-501 (smMLCIP), modulation of MLCK-dependent signaling, and MLCK-induced phosphorylation of the regulatory myosin light chain, MLC20. Nicotinamide abolished the phosphorylation of MLC20, but had no significant effect on the other endpoints tested. We conclude that the vasorelaxant effects of nicotinamide are mediated mainly through inhibition of MLC20 phosphorylation, and that this could be a promising target for the development of novel tumor oxygenators to enhance radio- and chemotherapy.     

Patients'' experience of being critically ill or severely injured and cared for in an intensive care unit in relation to the ICU syndrome. Part I

The intensive care unit (ICU) syndrome is regarded principally as a complex interaction of several contributory factors, all of which can be seen as partly responsible for the development of the syndrome. The purpose of this study was to describe and give a deeper insight into patients' experiences and memory recall, both during and after their stay in the ICU. Nineteen patients who had been respirator treated (ventilated), and had stayed at least 36 hours in the ICU, were interviewed about one week after discharge, and again 4-8 weeks after their discharge from the ICU. Patients' experiences are interpreted and related to previous views held concerning the syndrome, together with an awareness of other important and significant phenomena, i.e. a hermeneutic approach. This study partly confirms the findings of earlier studies concerning the ICU syndrome, but also reveals some new aspects, which have not previously been considered. The patients described themselves as experiencing some sort of state of chaos following the onset of their sickness, injury or accident, which resulted in feelings of extreme instability, vulnerability and fear, often experienced as prolonged inner tension. It was reported that even the most trivial events in circumstances or routines could trigger changes-either an increase or decrease-in patients' feelings of fear or inner tension. The caring relationship was perceived as providing an important degree of security and comfort. Nursing care actions can therefore be seen as vital factors in patients overcoming the accompanying horrific experiences to which they can be subjected. This state of chaotic feeling, and how it is combated and treated, appear to be one critical factor in the development and progression of the ICU syndrome.