9 research outputs found
High rates of unsuccessful transfer to adult care among young adults with juvenile idiopathic arthritis
<p>Abstract</p> <p>Background</p> <p>This study aimed to describe the proportion of patients with juvenile idiopathic arthritis (JIA) who had experienced an unsuccessful transfer from a pediatric rheumatology team to an adult rheumatologist and to compare the characteristics of those who achieved successful transfer to those who did not.</p> <p>Methods</p> <p>We conducted a systematic chart review of all patients with JIA who attended their final Montreal Children's Hospital JIA clinic appointment between 1992 and 2005. We tracked these patients for the two years after transfer to an adult rheumatologist. We then compared characteristics of patients with successful and unsuccessful transfers of care. Variables pertaining to disease characteristics, disease severity and psychosocial factors were examined. Univariate analyses were performed to determine if any single factor was associated with the outcome of unsuccessful transfer of care.</p> <p>Results</p> <p>52% of patients fulfilled our criteria for unsuccessful transfer. Of the variables tested, an active joint count (AJC) of zero at last visit was associated with the outcome of unsuccessful transfer (OR = 2.67 (CI 1.16-6.16; p = 0.0199)).</p> <p>Conclusions</p> <p>Despite the presence of a coordinated process of transfer from pediatric to adult health care for the majority of the patients in this study, there was a high rate of unsuccessful transfer and/or sustained follow up which is disheartening. We found that patients with less active disease at the time of transfer, as indicated by a lower AJC, were more likely to be lost to follow up. Recent literature suggests that even in the least severe categories of JIA, 50% of patients persist with active disease into adulthood. Thus educating all JIA patients about the possibility of disease flare in adulthood may improve their adherence to recommendations for sustained follow-up in the adult milieu. This may lead to improvement of longitudinal outcomes for all JIA patients.</p
Effective peer-to-peer support for young people with end-stage renal disease: a mixed methods evaluation of Camp COOL
__Abstract__
__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. Peerto-
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
Advances in experiments and modeling in micro-and nano-biomechanics: A mini review
10.1007/s12195-011-0183-xCellular and Molecular Bioengineering43327-33
Mitochondrial Mutations in Cancer Progression: Causative, Bystanders, or Modifiers of Tumorigenesis?
Mitochondrial DNA encodes genes that are de facto metabolic enzymes and are currently emerging as pivotal players in the origin, progression, and outcome of human cancers. We here revise the multifaceted implications of mitochondrial mutations on the metabolic reprogramming cancer cells must undergo to adapt and proliferate. The sources of such mutations and the processes that govern their positive selection are described, along with the consequences that a deranged respiratory metabolism may have on the remodeling that follows oncogenes activation or tumor suppressors ablation. Ultimately, we dwell on the peculiar features of oncocytic tumors, one of the most relevant yet mysterious models to functionally investigate the role of mitochondrial mutations in cancer