Development and preliminary validation of the 'Mind the Gap' scale to assess satisfaction with transitional health care among adolescents with juvenile idiopathic arthritis

BACKGROUND: To develop a scale to assess satisfaction with transitional health care among adolescents with a chronic illness and their parents. METHODS: The 'Mind the Gap' scale was developed using evidence from a previous needs assessment, in three stages: (1) definition of the construct; (2) design of the scale items, response options and instructions; (3) full administration of the scale, item analysis and dimensionality analysis. The scale was administered to 308 adolescents with juvenile idiopathic arthritis (JIA) and 303 parents/guardians, prior to and 12 months after the implementation of an evaluation of a structured and co-ordinated programme of transitional care. The patient population involved adolescents with JIA and their parents recruited from 10 major UK rheumatology centres. RESULTS: A total of 301 (97.7%) adolescents and 286 (95.0%) parents chose to complete the questionnaire, with median item completion rates of 100.0% (0-100%) for both adolescents and parents thus confirming feasibility. Face and content validity were confirmed. Factor analyses revealed a three-factor structure which explained 49.5% and 56.1% of the variation in adolescent and parent scores respectively. The internal consistency of each subscale ('management of environment', 'provider characteristics' and 'process issues') was indicated by Cronbach's alphas of 0.71, 0.89 and 0.89 for adolescents, respectively, and 0.83, 0.91 and 0.92 for parents respectively. Cronbach's alphas for the entire scales were 0.91 and 0.94 for the adolescent and parent forms respectively. CONCLUSION: These preliminary results report the potential of the 'Mind the Gap' scale in evaluating transitional care for adolescents with JIA. In view of the generic nature of transitional care reflected in the scale, this scale has wider potential for use with adolescents with other chronic illness in view of the generic nature of transition. This development is particularly timely in the context of transitional care developments in the UK and further validation of the scale is in progress.     

Tdap booster to adolescents with juvenile idiopathic arthritis on and off anti-TNF agents is safe and immunogenic

Introduction: The response to vaccines in juvenile idiopathic arthritis (JIA) patients on and off anti-tumor necrosis factor (anti-TNF) agents remains highly discussed. There are no published studies on the immune response following a Tdap booster dose in JIA patients so far.ObjectiveTo evaluate the immune response and safety after a Tdap booster in JIA patients and in healthy adolescents.MethodsNineteen adolescents with JIA according to the ILAR criteria on anti-TNF medication, 19 adolescents with JIA off anti-TNF medication, and 27 healthy adolescents (control group) were compared after a Tdap booster. Adverse events and disease activity were evaluated. Lymphocyte immunophenotyping was performed by flow cytometry. Tetanus, diphtheria and pertussis toxin antibodies were assessed by ELISA; whole blood was stimulated with whole-cell pertussis, and supernatants were assessed for cytokines by xMAP.ResultsThe three groups showed a similar frequency of adverse events. There was no disease reactivation after the Tdap booster. Tetanus, diphtheria and pertussis antibodies showed a significant response when D0 and D14 concentrations were compared in both JIA groups and controls. Over time, a different pattern of response to the Tdap booster was observed among the groups for tetanus antibodies (p = 0.005) but not for diphtheria and pertussis antibodies. In contrast to the protection attained for tetanus and diphtheria, in the three groups, not all individuals showed pertussis seroconversion at either D14 or D28. In addition, the seroconversion of three subjects with JIA on anti-TNF medication was not maintained at D28. JIA patients off anti-TNF showed a higher percentage of naive CD8 + T cells (p = 0.007) and central memory CD8 + cells (p = 0.003) and a lower percentage of effector CD8 + T cells (p = 0.003) and NK cell numbers (p = 0.018) than the control group. The JIA group off anti-TNF medication had fewer B lymphocytes than both the JIA group on anti-TNF medication and the control group (p = 0.016). Cellular immunity to Bordetella pertussis showed that IFNγ levels were significantly lower in both JIA groups than in the control group (p = 0.003), IL10 levels were higher in the JIA off anti-TNF group (p = 0.009), IL17A and IL5 levels were lower in the JIA on anti-TNF group than in the control group (p = 0.018 and p = 0.016, respectively); however, an increase in IFNγ (p = 0.008), IL17A (p = 0.030) and TNFα (p = 0.041) levels was observed at D14 in both patient groups. Both JIA groups showed higher levels of IL21 than the control group (p = 0.023).ConclusionWe conclude that individuals with JIA on or off anti-TNF agents showed a good response to a booster dose for the three antigens studied in the absence of major adverse events and without the reactivation of the disease.     

An assessment of the experiences and needs of adolescents with chronic conditions in transitional care: a qualitative study to develop a patient education programme

The transition of adolescents with chronic conditions is a challenging task. This study aimed to explore the experiences and needs of adolescents with chronic conditions in the transition period and to apply these findings to the design of a generic patient education programme. Data were collected from a sample of 29 adolescents with chronic conditions from Northern Germany and Switzerland including a broad range of views due to variation in disease management and organisation of care both in paediatric and adult populations. Participants were interviewed in group (n = 18) or individual (n = 11) interviews between September 2011 and February 2012, and the data were analysed using qualitative content analysis. The findings revealed that the interviewees expressed high levels of competency in the management of their chronic conditions but identified gaps in healthcare and unmet needs during transition. In particular, they believed that they would benefit from opportunities to exchange ideas and more specific information with peers about vocational and medical issues concerning adolescent health. Identified themes reflecting adolescent needs were used to develop the transition workshop including modules regarding the following: transfer to adult medicine, their new role as a patient, orientation within the healthcare system, vocational issues, detachment from parents, social support, contraception, substance abuse, family planning, stress‐management, activation of resources and developing personal goals. The workshop's content was largely generic and included some condition‐specific components. The workshop was designed as a compact 2‐day patient education programme in a group setting for adolescents prior to their transfer to adult care. The guiding principle was the idea of empowerment by supporting the adolescents through various interactive methods to develop adequate knowledge, skills, understanding and motivation regarding their chronic conditions. We conclude that patient education programmes promoting adolescent self‐management and empowerment increase the preparedness for transition.     

Growing up with HIV/AIDS: a study on adolescents with HIV/AIDS and their family caregivers

This is an exploratory study with a qualitative approach, which looks at the adolescent process with HIV/AIDS. The purpose is to identify how the adolescent process occurs, from the perspective of these teenagers and their family caregivers. The investigation was performed in Porto Alegre, RS between May and July 2005, and the subjects were four adolescents and three caregivers. Data were collected by means of interviews, which were subject to the content analysis technique. The study revealed that both teenagers and family caregivers did not show concern with the changes typical of the period, especially regarding sexuality questions. Yet, the underlying diagnosis and coping with HIV remain in the family core in order to protect these agents against the stigma of the disease.     

Growing up with bone marrow transplantation: repercussions for the quality of life of children and adolescents

Nowadays, various knowledge areas take an increasing interest in the discussion about the quality of life of people submitted to bone marrow transplantation-BMT. This study aims to describe the experiences of children and adolescents who survived this kind of transplantation and to discover how this therapy mode influenced their quality of life. Study participants were 14 children/adolescents who survived BMT. In this qualitative research, data were collected by means of interviews, which were held at the participants' homes or when they returned to hospital. We identified their life as permeated by insecurity, changed body image, physical and emotional problems. These data indicate the importance of understanding the experience of children/adolescents living with bone marrow transplantation, seeking to identify aspects for the intervention and planning of nursing care, so as to contribute to their reinsertion and a better quality of life.     

Jointly managing arthritis: information needs of children with juvenile idiopathic arthritis (JIA) and their parents

The objective of this article is to explore information needs of children with juvenile idiopathic arthritis (JIA) and their parents in order to develop a web-based psychoeducational program aimed at improving their quality of life. A qualitative study design was used. A purposive sample of children (n = 41; 8-11 years) with JIA and parents (n = 48) participated in parent-child interviews (n = 29), and four child-focus and four parent-focus group interviews. Transcribed data were organized into categories that reflected emerging themes. Findings uncovered three major themes: "living with JIA", "jointly managing JIA", and "need for a web-based program of JIA information and social Support". Subthemes for "Living with JIA" were as follows: "impact on participation", "worry and distress", and "receiving social support". Subthemes under "Jointly Managing JIA" included "obtaining JIA information", "communication and advocacy", and "strategies to manage JIA". Participants endorsed a web-based program as a way to access JIA information and social support. In order to jointly manage JIA, participants expressed the need for disease-specific information, management strategies, and social support and felt that the Internet was acceptable for delivering these disease-management strategies. Findings from this study will inform development and evaluation of an online program to help children and parents jointly manage JIA.     

Economic evaluation of a multi-disciplinary community-based intervention programme for New Zealand children and adolescents with obesity

ObjectiveTo determine whether Whānau Pakari, a home-based, 12-month multi-disciplinary child obesity intervention programme was cost-effective when compared with the prior conventional hospital-based model of care.MethodsWhānau Pakari trial participants were recruited January 2012–August 2014, and randomised to either a high-intensity intervention (weekly sessions for 12 months with home-based assessments and advice, n = 100) or low-intensity control (home-based assessments and advice only, n = 99). Trial participants were aged 5–16 years, resided in Taranaki, Aotearoa/New Zealand (NZ), with a body mass index (BMI) ≥98th centile or BMI >91st centile with weight-related comorbidities. Conventional group participants (receiving paediatrician assessment with dietitian input and physical activity/nutrition support, n = 44) were aged 4–15 years, and resided in the same or another NZ centre. The change in BMI standard deviation score (SDS) at 12 months from baseline and programme intervention costs, both at the participant level, were used for the economic evaluation. A limited health funder perspective with costs in 2016 NZ$ was taken.ResultsThe per child 12-month Whānau Pakari programme costs were significantly lower than in the conventional group. In the low-intensity group, costs were NZ$939 (95% CI: 872, 1007) (US$648) lower than the conventional group. In the high-intensity intervention group, costs were NZ$155 (95% CI: 89, 219) (US$107) lower than in the conventional group. BMI SDS reductions were similar in the three groups.ConclusionsA home-based, multi-disciplinary child obesity intervention had lower programme costs per child, greater reach, with similar BMI SDS outcomes at 12 months when compared with the previous hospital-based conventional model.     

Long-term follow-up of a 10-month programme in curriculum development for medical educators: a cohort study

Context  There is an ongoing need for curriculum development (CD) in medical education. However, only a minority of medical teaching institutions provide faculty development in CD. This study evaluates the long-term impact of a longitudinal programme in curriculum development.
Methods  We surveyed eight cohorts of participants ( n  =   64) and non-participants ( n  =   64) from 1988 to 1996 at baseline and at 6–13 years after completion of a 10-month, one half-day per week programme offered annually, which included a mentored CD project, workshops on CD steps, a final paper and a presentation.
Results  Fifty-eight participants (91%) and 50 non-participants (78%) returned completed follow-up surveys. In analyses, controlling for background characteristics and baseline self-rated proficiencies, participants were more likely than non-participants at follow-up to report having developed and implemented curricula in the past 5 years (65.5% versus 43.7%; odds ratio [OR] 2.41, 95% confidence interval [CI] 1.03–5.66), to report having performed needs assessment when planning a curriculum (86.1% versus 58.8%; OR 5.59, 95% CI 1.20–25.92), and to rate themselves highly in developing (OR 3.57, 95% CI 1.36–9.39), implementing (OR 3.04, 95% CI 1.16–7.93) and evaluating (OR 2.74, 95% CI 1.10–6.84) curricula. At follow-up, 86.2% of participants reported that the CD programme had made a moderate or great impact on their professional careers. Responses to an open-ended question on the impact confirmed continued involvement in CD work, confidence in CD skills, application of CD skills and knowledge beyond CD, improved time management, and lasting relationships formed because of the programme.
Conclusions  Our results suggest that a longitudinal faculty development programme that engages and supports faculty in real CD work can have long-lasting impact.     

Child health surveillance: development of a multicentre course and its evaluation

With increasing numbers of general practitioners wishing to provide child health surveillance during the 1980s and the expected further increase with the 1990 General Practice Contract, a course in child health surveillance was developed. The content of the course was determined by a needs assessment of Welsh general practitioners in combination with the expectations of paediatricians already involved in educating doctors in community child health. A multicentre course with prepared materials was developed. Teaching methods reflected adult learning needs, included practical clinical competencies and was centred in small groups each led by local tutors. The course was held annually on three occasions, with 220 participants in total. The materials and teaching methods were highly acceptable to the participants, and evaluation demonstrated a significant increase in knowledge and confidence. All participants reached the required clinical competence, six after further teaching. The content, teaching methods, and evaluation methods were altered in the light of feedback, resulting in a 'stand alone' course with built-in evaluation, which is now being provided by local tutors. This study has demonstrated the feasibility of providing a course for large numbers of doctors, using predominantly small-group teaching and discussion with local tutors. We are grateful to all the participants and especially the tutors.     

Effect of a behavioural health and specialty care telemedicine programme on goal attainment for youths in juvenile detention

We conducted a pre-post study of the effect of a telepsychiatry counselling service on youths housed in three juvenile detention facilities. In the first year of the telemedicine programme, 321 psychiatry consultations were conducted via telemedicine; in the second year of the programme, 573 psychiatry consultations were conducted. Records for 190 students were then examined by two raters. The total number of behavioural goals for each adolescent increased from 8.2 in the pre-telemedicine year to 8.7 in the first year of telemedicine and then to 10.0 in the second year (P < 0.05). In Year 2 of the study, subjects also had a significantly higher number of goals in four of the five categories: education, family, health and social skills (P < 0.05). Although other changes at the youth detention facilities or in the juvenile justice system may have been partly responsible for the effects observed, the study suggests that telemedicine may be useful for improving the rate of attainment of goals associated with family relations and personality/behaviour.     

Problem-solving instruction during the clinical clerkship: description and preliminary evaluation of a programme

A clerkship programme in general surgery is described whereby students acquire factual knowledge about disease entities through independent learning rather than through formal teaching. The objectives of the programme are to promote problem-solving skills. It consists of clinical work (patient work-up, clinical rounds, participation in the activities in the operating room, out-patient clinic and emergency room) and of small-group tutorial sessions. The described programme has met with approval and satisfaction from both students and teachers. There were no significant differences in the average grades on the written and oral final examinations between the graduates of this clerkship programme and those of a traditional one. Independent learning and problem-solving instruction, which have been adopted by some medical schools in the preclinical phase of the curriculum, can be effectively implemented during the clinical phase as well.     

Safety of Measles-Mumps-Rubella booster vaccination in patients with juvenile idiopathic arthritis: A long-term follow-up study

ObjectivesTo study short and long-term disease activity and vaccine-related adverse events in a cohort of JIA patients who received the live attenuated measles-mumps-rubella (MMR) booster vaccine while being treated with immunosuppressive and immunomodulatory therapies.MethodsA retrospective study was performed in the UMC Utrecht, clinical and therapeutic data were collected from electronic medical records for two visits before and two visits after the MMR booster vaccine of JIA patients. Drug therapy was collected and adverse events related to the vaccine were requested from the patients during clinical visits or by short phone interviews. Associations between MMR booster vaccination and the active joint count, physician global assessment of disease activity, patient-reported visual analogue scale (VAS) for well-being and clinical Juvenile Arthritis Disease Activity Score (cJADAS) were analyzed using multivariable linear mixed effects analyses.ResultsA total of 186 JIA patients were included in the study. At the time of vaccination, 51% of the patients used csDMARD and 28% used bDMARD therapy. Overall, adjusted disease activity scores after MMR booster vaccination were not significantly different compared to pre-vaccination. Mild adverse events related to the MMR booster were reported for 7% of the patients. No serious adverse events were reported.ConclusionMMR booster vaccination was safe and did not worsen disease activity during long-term follow-up in a large cohort of JIA patients being treated with both csDMARDs and biological DMARDs.     

Long-term safety and efficacy of varicella vaccination in children with juvenile idiopathic arthritis treated with biologic therapy

ObjectiveTo evaluate the long-term safety and efficacy of varicella vaccination in children with juvenile idiopathic arthritis (JIA) treated with biologics.MethodsWe performed a prospective study with long term follow up. Six patients with JIA treated with biologics, received 2 doses of varicella vaccine. Before vaccination, JIA was stable on therapy and peripheral blood lymphocyte populations were within normal limits. After vaccination, children were followed for disease activity, infections and production of protective antibodies.ResultsThere were no serious side effects after vaccination and no varicella infection. Disease activity remained stable. Five patients (83%) produced protective antibodies against varicella virus 6 weeks after the second vaccination. One patient with low level of protective antibodies got mild varicella infection 4 months after the second vaccination.ConclusionVaricella vaccination appears to be safe in our group of six JIA patients treated with biologics. Vaccination does not always protect against varicella infection.     

幼年特发性关节炎医院感染患儿的临床特征及免疫指标分析

目的分析幼年特发性关节炎(juvenile idiopathic arthritis,JIA)合并医院感染患儿的临床特征及免疫指标变化。方法选取2013年3月-2018年3月203例武汉儿童医院JIA患儿作为研究对象,对其医院感染情况进行观察和分析。对感染患儿与未感染患儿的临床特征、外周血CD_3~+ T淋巴细胞比例、CD_4~+ T淋巴细胞比例、CD_8~+ T淋巴细胞比例、CD_4~+/CD_8~+ T淋巴细胞比值、NK细胞比例、免疫球蛋白IgG水平、IgM水平、IgA水平、补体C3水平、补体C4水平进行研究和对比。结果有42例JIA患儿发生医院感染,感染率为20.69%,主要为下呼吸道感染和消化系统感染,分别占44.07%和22.03%;与未发生医院感染的患儿相比较,发生医院感染患儿的年龄较小,外周血白细胞计数、C反应蛋白水平较高,血红蛋白水平较低(P<0.001);与未发生医院感染的患儿相比较,发生医院感染患儿的外周血CD_4~+ T淋巴细胞比例、NK细胞比例、CD_4~+/CD_8~+ T淋巴细胞比值、IgG水平、IgM水平、IgA水平、补体C3水平较低,CD_8~+ T淋巴细胞比例较高(P<0.05)。结论住院JIA患儿具有较高的医院感染率,反复多次感染多见,发生感染患儿具有年龄小、炎症标志物水平高、营养水平不佳等临床特征,医院感染可导致患儿的免疫功能紊乱进一步加剧,预防和控制JIA患儿的医院感染,对于改善患儿预后具有积极的意义。     

Career development of women in health care administration: a preliminary consideration

As greater numbers of women enter health care administration, it is important to understand their career perceptions so that organizations can assist them in becoming effective leaders. This article reports findings from focused interviews of women administrators regarding their career development and expectations and suggests issues that require attention.     

Social/economic costs and health-related quality of life in patients with juvenile idiopathic arthritis in Europe

Objective

The aim of this study was to determine the economic burden from a societal perspective and the health-related quality of life (HRQOL) of patients with juvenile idiopathic arthritis (JIA) in Europe.

Methods

We conducted a cross-sectional study of patients with JIA from Germany, Italy, Spain, France, the United Kingdom, Bulgaria, and Sweden. Data on demographic characteristics, healthcare resource utilization, informal care, labor productivity losses, and HRQOL were collected from the questionnaires completed by patients or their caregivers. HRQOL was measured with the EuroQol 5-domain (EQ-5D-5L) questionnaire.

Results

A total of 162 patients (67 Germany, 34 Sweden, 33 Italy, 23 United Kingdom, 4 France, and 1 Bulgaria) completed the questionnaire. Excluding Bulgarian results, due to small sample size, country-specific annual health care costs ranged from €18,913 to €36,396 (reference year: 2012). Estimated direct healthcare costs ranged from €11,068 to €22,138; direct non-healthcare costs ranged from €7837 to €14,155 and labor productivity losses ranged from €0 to €8715. Costs are also shown to differ between children and adults. The mean EQ-5D index score for JIA patients was estimated at between 0.44 and 0.88, and the mean EQ-5D visual analogue scale score was estimated at between 62 and 79.

Conclusions

JIA patients incur considerable societal costs and experience substantial deterioration in HRQOL in some countries. Compared with previous studies, our results show a remarkable increase in annual healthcare costs for JIA patients. Reasons for the increase are the inclusion of non-professional caregiver costs, a wider use of biologics, and longer hospital stays.

     

Effects of a 4‐week transitional care programme for discharged stroke survivors in Hong Kong: a randomised controlled trial

Stroke rehabilitation involves care issues concerning the physical, psychosocial and spiritual aspects. Hospital‐based rehabilitation has its limitations because many of the care issues only emerge when patients return home. Transitional care models supporting patients after discharge from the hospital have proved to be effective among chronically ill patients, but limited studies were conducted among stroke survivors. This study was a randomised controlled trial conducted to test the effectiveness of a transitional care programme (TCP) which was a nurse‐led 4‐week programme designed based on the assessment–intervention–evaluation Omaha System framework. Between August 2010 and October 2011, 108 stroke patients who were discharged home, able to communicate, and had slight to moderate neurological deficits and disability were randomised into control (n = 54) and intervention groups (n = 54). Data on the patient‐related and clinical outcomes were collected at baseline, 4 weeks when the TCP was completed and 8 weeks after discharge from hospital. Repeated measures analysis of variance with intention‐to‐treat strategy was used to examine the outcomes. There were significant between‐group differences in quality of life, the primary outcome measure of this study, in both physical (F(1, 104) = 10.15, P = 0.002) and mental (F(1, 104) = 8.41, P = 0.005) domains, but only the physical domain achieved a significant time × intervention interaction effect (F(1, 103) = 7.73, P = 0.006). The intervention group had better spiritual–religion–personal measures, higher satisfaction, higher Modified Barthel Index scores and lower depression scores when compared with the control group. They also had lower hospital readmission and use of emergency room rates, but only the use of emergency room had significant difference when compared to control. This study is original in testing a transitional model among stroke patients discharged from hospital. The TCP shares common features that have been proved to be effective when applied to chronically ill patients, and the duration of 4 weeks seems to be adequate to bring about immediate effects.