Blogging as a viable research methodology for young people with arthritis: a qualitative study.

The development of services that are responsive to the needs of users is a health policy priority. Finding ways of engaging young people in research to gain insights into their particular experiences, perspectives, and needs is vital but challenging. These data are critical to improving services in ways that meet the needs of young people

Good vibrations: Do electrical therapeutic massagers work?

Health, leisure and beauty activities are increasing in popularity, with a particular emphasis on self-help and alternative health practices. One product type that has increased sales with this expansion is the hand-held electric massager. These are products that use vibration as a means of alleviating muscular strains and pains, as well as promoting relaxation. Paradoxically, these products are extremely popular as gifts, but are soon discarded. A multi-disciplinary research team was commissioned by a British manufacturer of electrical consumer products to investigate user attitudes and perceptions of existing massagers, to identify areas of user dissatisfaction. The manufacturer was also concerned about a possible stigma attached to these products because of an association with sex aids. This paper provides an account of the perceptions of both consumers and therapists regarding the use of these products. Identifying the differences between the perceptions of consumers and therapists should help provide a basis for effective integration of user needs, manufacturer requirements, designers’ skills and sound therapeutic practice. The results provide insight to support the development of more effective hand-held massagers

The role of pharmacists in caring for young people with chronic illness

PURPOSE: To explore the perceived and potential roles of pharmacists in the care of young people aged 10–24 years with chronic illness, through the exemplar of juvenile arthritis, from the perspectives of UK community and hospital pharmacists, health service commissioners, rheumatology health professionals, and lay advocates. METHODS: A sequential mixed methods study design comprises the following: focus groups with community and hospital pharmacists; telephone interviews with pharmacy and rheumatology stakeholders and commissioners; and multidisciplinary group discussions to prioritize roles generated by the first two qualitative phases. RESULTS: The high priority roles for pharmacists, identified by pharmacists and rheumatology staff, were developing generic health care skills among young people; transferring information effectively across care interfaces; building trusting relationships with young people; helping young people to find credible online health information; and the need to develop specialist expertise. Participants identified associated challenges for pharmacists in supporting young people with chronic illness. These challenges included parents collecting prescription refills alone, thus reducing opportunities to engage, and pharmacist isolation from the wider health care team. CONCLUSIONS: This study has led to the identification of specific enhancements to pharmacy services for young people, which have received the endorsement of a wide range of stakeholders. These suggestions could inform the next steps in developing the contribution of community and hospital pharmacy to support young people with chronic illness in the optimal use of their medication

Are we there yet?:An update on transitional care in rheumatology

Abstract Significant progress has been made in the understanding of transitional care in rheumatology over the last few decades, yet universal implementation has not been realised and unmet needs continue to be reported. Possible explanations for this include lack of evidence as to which model is most effective; lack of attention to the multiple dimensions, stakeholders and systems involved in health transitions; and lack of consideration of the developmental appropriateness of transition interventions and the services/organisations/systems where such interventions are delivered. Successful transition has major implications to both the young people with juvenile-onset rheumatic disease and their families. Future research in this area will need to reflect both the multidimensional (biopsychosocial) and the multisystemic (multiple systems and stakeholders across personal/social/family support networks and health/social care/education systems). Only then will we be able to determine which aspects of transition readiness and service components influence which dimension. It is therefore imperative we continue to research and develop this area, involving both paediatric and adult rheumatology clinicians and researchers, remembering to look beyond both the condition and our discipline. Neither should we forget to tap into the exciting potential associated with digital technology to ensure further advances in transitional care are brought about in and beyond rheumatology

Parents in transition: Experiences of parents of young people with a liver transplant transferring to adult services

Predictors of successful transition from pediatric to adult services include ability to self-manage and engage with healthcare services. Parents have a key role in healthcare management throughout childhood and adolescence including encouraging development of self-management skills in their children. Transition to adult services can be challenging for parents and young people, yet parents' views regarding transition remain largely unexplored. Nine parents of pediatric liver transplant recipients (15.2-25.1 yr) participated in semistructured interviews. Interviews were analyzed using IPA. Analysis revealed three key themes: "emotional impact of transplantation," "protection vs. independence," and "ending relationships and changing roles." Parents expressed the dichotomous nature of the desire to promote independence in their child while still maintaining control and protection, and discussed how changing roles and relationships were difficult to navigate. Parents are important facilitators of young people's development of self-management skills for successful transfer to adult services. Parents should be supported to move from a "managerial" to a "supervisory" role during transition to help young people engage independently with the healthcare team. Findings support the development of interventions for parents to emphasize their role in transition and guide the transfer of self-management skills from parent to young person

Interventions for involving older patients with multimorbidity in decision‐making during primary care consultations

This is the final version. Available from Wiley via the DOI in this record. Background The number of older people with more than one long-term health problem is steadily increasing worldwide. Such individuals can have complicated healthcare needs. Although they frequently want to be involved in making decisions about their health care, they are less often involved than younger, healthier people. As a result, they may not be offered the same treatment options. Review question We reviewed available evidence about the effects of interventions intended to involve older people with more than one long-term health problem in decision-making about their health care during primary care consultations. Study characteristics We included research published up until August 2018. We found three relevant studies involving 1879 participants. These studies were reported from three countries. Participants were over 65 years of age with three or more long-term health problems on average. Interventions investigated included: · patient workshops and individual patient coaching; · patient coaching including cognitive-behavioural therapy; and Selection criteria We sought randomised controlled trials (RCTs), cluster-RCTs, and quasi-RCTs of interventions to involve patients in decision-making about their health care versus usual care/control/another intervention, for patients aged 65 years and older with multi-morbidity in primary care. Data collection and analysis We used standard Cochrane methodological procedures. Meta-analysis was not possible; therefore we prepared a narrative synthesis. Main results We included three studies involving 1879 participants: two RCTs and one cluster-RCT. Interventions consisted of: · patient workshop and individual coaching using behaviour change techniques; · whole-person patient review, practitioner training, and organisational changes. All studies were funded by national research bodies. Key results None of the studies reported the main outcome ‘patient involvement in decision-making about their health care’ nor whether there was less patientinvolvement as a result ofthe intervention. Interventions were notfound to increase adverse outcomes such as death, anxiety, emergency department attendance, or hospital admissions.. We are uncertain whetherinterventions forinvolving older people with more than one long-term health problem in decision-making about their health care can improve their self-rated health or healthcare engagement, or make any difference in self-efficacy (one's belief in one's ability to succeed in specific situations) or in the overall number of general practice visits. We can report that these interventions probably make little or no difference in patients' quality of life but probably increase the number of patients discussing their priorities, and are associated with more patient consultations with nurses, when compared to usual care. Interventions may be associated with more changes in the management of health conditions when considered from the patient’s perspective when compared with a control group. The quality of the evidence was limited by small studies, and by studies choosing to measure different outcomes, resulting in lack of data that could be combined in analyses. Conclusions Further research in this developing area is required before firm conclusions can be drawnNational Institute for Health Research (NIHR

The challenges of transferring chronic illness patients to adult care: reflections from pediatric and adult rheumatology at a US academic center

<p>Abstract</p> <p>Background</p> <p>Little is known about the transfer of care process from pediatric to adult rheumatology for patients with chronic rheumatic disease. The purpose of this study is to examine changes in disease status, treatment and health care utilization among adolescents transferring to adult care at the University of California San Francisco (UCSF).</p> <p>Methods</p> <p>We identified 31 eligible subjects who transferred from pediatric to adult rheumatology care at UCSF between 1995–2005. Subject demographics, disease characteristics, disease activity and health care utilization were compared between the year prior to and the year following transfer of care.</p> <p>Results</p> <p>The mean age at the last pediatric rheumatology visit was 19.5 years (17.4–22.0). Subject diagnoses included systemic lupus erythematosus (52%), mixed connective tissue disease (16%), juvenile idiopathic arthritis (16%), antiphospholipid antibody syndrome (13%) and vasculitis (3%). Nearly 30% of subjects were hospitalized for disease treatment or management of flares in the year prior to transfer, and 58% had active disease at the time of transfer. In the post-transfer period, almost 30% of subjects had an increase in disease activity. One patient died in the post-transfer period. The median transfer time between the last pediatric and first adult rheumatology visit was 7.1 months (range 0.7–33.6 months). Missed appointments were common in the both the pre and post transfer period.</p> <p>Conclusion</p> <p>A significant percentage of patients who transfer from pediatric to adult rheumatology care at our center are likely to have active disease at the time of transfer, and disease flares are common during the transfer period. These findings highlight the importance of a seamless transfer of care between rheumatology providers.</p

The Longitudinal Relationship Between Satisfaction with Transitional Care and Social and Emotional Quality of Life Among Chronically Ill Adolescents

This study aimed to identify the relationship between satisfaction with transitional care and quality of life of chronically ill adolescents over time. This longitudinal study included adolescents with type I diabetes, juvenile idiopathic arthritis (JIA), and neuromuscular disorders (NMD). At baseline 138 respondents (response rate 31 %) filled in a questionnaire and 188 about 1 year later (response rate 43 %). Analysis of variance showed that adolescents with diabetes reported the highest physical quality of life, followed in order by those with NMD and JIA (p ≤ 0.01). Adolescents with diabetes reported the highest social quality of life, followed in order by those with JIA and NMD (both at p ≤ 0.001). Univariate analyses showed that satisfaction with transitional care at T0 was significantly related to emotional and physical quality of life at T1 (both at p ≤ 0.05). At T1, satisfaction with transitional care was significantly related to the emotional, physical, and social domains of quality of life (all at p ≤ 0.001). Multiple regression analyses revealed that satisfaction with transitional care at T1 was related to emotional (β -0.20; p ≤ 0.05) and social (β -0.35; p ≤ 0.01) quality of life domains over time. This indicates that lower gap scores, which measured differences between 'best care' and 'current care,' are associated with better social and emotional quality of life in this sample of adolescents. Satisfaction with transitional care and social and emotional quality of life are related over time

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

The transition of adolescents with juvenile idiopathic arthritis or epilepsy from paediatric health-care services to adult health-care services: A scoping review of the literature and a synthesis of the evidence

Young people with long-term health conditions (LTCs) can face challenges when making the transition to adult health services. This paper sought to identify studies that assess and explore transitional care for young people with LTCs. Two conditions were used as exemplars: juvenile idiopathic arthritis (JIA) and epilepsy. A scoping review of the literature was conducted by using search terms to search for papers in English between 2001 and 2016 concerning transitional care on four databases. Qualitative papers were reviewed and synthesized using thematic analysis. Quantitative papers using health outcomes were also synthesized. Twenty-eight papers were selected for review. Despite the wealth of literature concerning aspects of transitional care that are key to a successful transition for young people with JIA or epilepsy, there is a paucity of outcomes that define ‘successful’ transition and consequently a lack of reliable research evaluating the effectiveness of transitional care interventions to support young people moving to adult health services