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1.  Reducing bottlenecks: professionals’ and adolescents’ experiences with transitional care delivery 
The purpose of this study was to describe the interventions implemented in a quality improvement programme to improve transitional care and evaluate its effectiveness in reducing bottlenecks as perceived by professionals and improving chronically ill adolescents’ experiences with care delivery.
This longitudinal study was undertaken with adolescents and professionals who participated in the Dutch ‘On Your Own Feet Ahead!’ quality improvement programme. This programme followed the Breakthrough Series improvement and implementation strategy.
A total of 102/128 (79.7%) professionals from 21 hospital teams filled out a questionnaire at the start of the programme (T0), and 79/123 (64.2%; five respondents had changed jobs) professionals completed the same questionnaire 1 year later (T1). Seventy-two (58.5%) professionals from 21 teams returned questionnaires at both time points. Of 389 and 430 participating adolescents, 36% and 41% returned questionnaires at T0 and T1, respectively. We used descriptive statistics and two-tailed, paired t-tests to investigate improvements in bottlenecks in transitional care (perceived by professionals) and care delivery (perceived by adolescents).
Professionals observed improvement in all bottlenecks at T1 (vs. T0; p < 0.05), especially in the organisation of care, such as the presence of a joint mission between paediatric and adult care, coordination of care, and availability of more resources for joint care services. Within a 1-year period, the transition programme improved some aspects of patients’ experiences with care delivery, such as the provision of opportunities for adolescents to visit the clinic alone (p < 0.001) and to decide who should be present during consultations (p < 0.05).
This study demonstrated that transitional care interventions may improve the organisation and coordination of transitional care and better prepare adolescents for the transition to adult care within a 1-year period. By setting specific goals based on experiences with bottlenecks, the breakthrough approach helped to improve transitional care delivery for adolescents with chronic conditions.
PMCID: PMC3913627  PMID: 24485282
Bottlenecks; Quality of care; Transitional care; Transition programme; Quality improvement programme; Adolescents
2.  Effective peer-to-peer support for young people with end-stage renal disease: a mixed methods evaluation of Camp COOL 
BMC Nephrology  2013;14:279.
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’).
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.
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.
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.
PMCID: PMC3878094  PMID: 24359407
3.  The proxy problem anatomized: child-parent disagreement in health related quality of life reports of chronically ill adolescents 
Discrepancy between self-reports and parent-proxy reports of adolescent health-related quality of life (HRQoL) has been repeatedly acknowledged in the literature as the proxy problem. However, little is known about the extent and direction of this discrepancy. The purpose of this study is to explore to what extent and in what direction HRQoL self-reports of adolescents with chronic conditions and those of their parents differ.
A cross-sectional survey was conducted among adolescents suffering from chronic conditions and their parents. Socio-demographic and disease-related characteristics were collected and information about consequences of the chronic condition was assessed. HRQoL was measured with KIDSCREEN-10 and DISABKIDS condition generic measure (DCGM-10). Agreement was analysed through defining a threshold of agreement based on half of the standard deviation of the HRQoL score with the highest variance. Agreement occurred if the difference between adolescent and parent scores was less than or equal to half of the standard deviation. Intra-class correlation coefficients and Bland-Altman plots were also computed. The characteristics associated with direction of disagreement were statistically tested with one-way ANOVA and Chi-square tests.
584 paired HRQoL scores were obtained. Ratings from both adolescents and parents were high, compared to European norm data. Differences between adolescents and parents were statistically significant, yet relatively small. Disagreement existed in both directions: in 24.5% (KIDSCREEN-10) and 16.8% (DCGM-10) of the cases adolescents rated their HRQoL lower than did their parent, while in 32.2% (KIDSCREEN-10) and 31.7% (DCGM-10) of the cases the opposite was true. Adolescent's age, educational level and type of education, parent's educational level, number of hospital admissions and several other disease-related factors influenced direction of disagreement.
In a reasonable proportion of cases the adolescent and parent agreed on the adolescent's HRQoL (43-51% of the cases) and most disagreement tended to be minor. Thus, the proxy problem may be smaller than presented in the literature and its extent may differ per population. As adolescents are expected to become partners in their own health care, it is recommended to focus on adolescents' own perceptions of HRQoL.
PMCID: PMC3299605  PMID: 22276974
Adolescent; Chronic Illness; Self Report; Quality of Life; Parent; Proxy Report; KIDSCREEN-10; DCGM-10
4.  “What we want”: chronically ill adolescents’ preferences and priorities for improving health care 
As important users of health care, adolescents with chronic conditions deserve to be consulted about their experiences and expectations. This study aimed to explore chronically ill adolescents’ preferences regarding providers’ qualities, and outpatient and inpatient care. Furthermore, suggestions for improvement of service delivery were collected.
This research was a sequential mixed methods study in adolescents aged 12–19 years with various chronic conditions treated in a university children’s hospital. Methods comprised 31 face-to-face interviews at home, a hospital-based peer research project in which nine adolescents interviewed 34 fellow patients, and a web-based questionnaire (n = 990). Emerging qualitative themes were transformed into questionnaire items.
Having “a feeling of trust” and “voice and choice” in the hospital were central to these adolescents. Regarding providers’ qualities, “being an expert” and “being trustworthy and honest” were ranked highest, followed by “being caring and understanding”, “listening and showing respect”, and “being focused on me”. Regarding outpatient consultations, preferences were ranked as follows: “answering all questions”; “attending to my and my parents’ needs”; and “clear communication”, while “limited waiting times” and “attractive outpatient surroundings” scored lowest. Regarding hospitalization, adolescents most preferred to “avoid pain and discomfort”, “keep in touch with home”, and “be entertained”, while “being hospitalized with peers” and “being heard” were least important. Regarding priorities for improvement, 52% of the respondents felt that more attention should be paid to older children, followed by enabling more contact with family and friends (45%), shorter waiting times (43%), and more activities to meet fellow patients (35%).
Adolescents prefer technically competent providers, who are honest and trustworthy, and attend to their needs. As they gradually grow out of the pediatric environment, they desire staff attitudes to become less childish and more age-appropriate, and welcome being treated as an equal partner in care. Health care professionals should inquire into preferences and adjust their communication style accordingly.
PMCID: PMC3140311  PMID: 21792301
chronic illness; patient participation; mixed methods research; hospital care
6.  Bridging the gap between paediatric to adult care: experiences with the transition of adolescents with chronic conditions in the Netherlands 
Despite growing numbers of adolescents with chronic conditions, transition from paediatric to adult care has received little attention in the Netherlands.
To identify gaps in transition to adult care of chronically ill adolescents from the perspectives of youth, parents and caregivers.
Semi-structured interviews with 24 adolescents (aged 15–22, with various chronic conditions), 24 parents and 17 healthcare professionals. Thematic analysis was performed using ATLAS.ti.
Several themes were identified among adolescents and parents. Both viewed leaving paediatric care as a ‘logical step’, but noticed they were ‘unprepared and uninvolved’ in the process. Most parents found it ‘hard to leave familiar surroundings’, while adolescents' most common attitude was ‘wait and see’ reflecting a certain ease with the situation. However, both reported ‘feeling lost after transition’ due to cultural and procedural differences between paediatric and adult care. Adolescents are ‘struggling with responsibility’ in the adult environment, while parents find it hard ‘to let go in confidence’. One overarching theme, ‘gaining trust’, appeared from caregivers, adolescents, and parents.
Adolescents' preparation for adult care is deficient from patient, parent and caregiver perspectives. Transitional care should focus on adolescents' independency, parental involvement and bridging the gap between paediatric and adult caregivers.
PMCID: PMC2807111
healthcare transition; adolescent; parents; chronic conditions; preferences; experiences
7.  From research to innovation: a breakthrough in transitional care for adolescents with chronic conditions 
In the Netherlands, adolescents with chronic conditions are often ill prepared for their transition to adult care. Services are not geared toward adolescents' needs and preferences. To bridge these gaps, a four-year innovation programme, On Your Own Feet Ahead, was started in 2008.
To provide integrative health care services and appropriate transitional care to adolescents (12–25 years) with somatic chronic conditions. The programme focuses on the establishment of independent health behaviours, increasing of self-management skills and improving the organisation of transitional care.
Using a breakthrough approach, ten multidisciplinary pilot teams from hospitals and rehabilitation centres in the Netherlands implemented and evaluated a number of interventions and policy changes to improve transitional care, including the use of a transition coordinator, clinical pathways and individual transition plans. In the next phase of implementation, best practices will be spread nation-wide.
Despite considerable difficulties in finding local commitment and bridging cultural and organisational gaps, most teams succeed in establishing structural change and new partnerships. To facilitate changes, more commitment on national policy level seems required.
In the pilot phase, the action-oriented breakthrough approach facilitated structural improvements of transitional care. This is promising for further dissemination.
PMCID: PMC2807088
health care transition; adolescent; young adult; chronic conditions; the Netherlands
8.  The development, implementation and evaluation of an outpatient palliative radiotherapy programme 
Improve the quality of integrated care and support to oncology outpatients receiving palliative radiotherapy.
Oncology patients receiving palliative radiotherapy experience major transitions. These patients are currently offered shortened outpatient treatment. In 2004–2005, research by RU students showed deficiencies in information, continuity in care, and in communication between health care providers. To improve integrated care and transmural cooperation multidisciplinary teams contributed to developing a protocol and checklist called ‘Transmural Programme Palliative Radiotherapy’ (TZPR).
The RU Centre of Expertise Transitions in Care evaluated the process of regional implementation and the value of TZPR on patient and organizational level. Themes were needs, logistic process, symptom control, psychosocial support and after-care. A mixed methods design was used: semi-structured interviews with 20 caregivers and patients; a focus group discussion with 7 caregivers; a questionnaire for both patients and control group.
Health professionals are positive about the content and implementation of TZPR. They experienced an improvement in the quality of integrated care and support to patients. Preliminary results from the patients' perspective are expected mid-2009. The participatory approach guarantees the desired integrated care.
PMCID: PMC2807066
palliative care; radiotherapy; oncology patients; quality of care

Results 1-8 (8)