What factors contribute to cancer survivors' self-management skills? A cross-sectional observational study.

PURPOSE: Many cancer survivors, facing the consequences of their disease and its treatment, have medical and supportive aftercare needs. However, limited knowledge exists regarding the relationship between support needs and survivors' self-management skills. The study aim is to explore factors contributing to cancer survivors' self-management skills. METHODS: A cross-sectional study was conducted among cancer survivors (n = 277) of two outpatient oncology clinics at a university hospital in the Netherlands. Patients with head and neck cancer (n = 55) who had received radiotherapy and cisplatin or cetuximab were included, as well as patients who had undergone hematopoietic stem cell transplantation (n = 222). The primary outcome was self-management skills, assessed using the Partners in Health Scale (PIH), which comprises two subscales: knowledge and coping (PIH-KC), and recognition and management of symptoms, and adherence to treatment (PIH-MSA). Secondary outcomes were quality of life (EORTC QLQ-C30), self-efficacy (SECD6), patient-centered care (CAPHS), and social support (HEIQ). Machine learning-based Random Forest models were employed to construct associative models. Feature Importance (FI) was used to express the contribution to the model. RESULTS: High emotional quality of life (FI = 33.1%), increased self-efficacy (FI = 22.2%), and greater social support (FI = 18.2%) were identified as key factors contributing to cancer survivors' self-management knowledge (PIH-KC). Furthermore, greater support from professionals (FI = 36.1%) and higher self-efficacy (FI = 18.2%) were found to benefit participants' recognition and management, and therapy adherence (PIH-MSA). CONCLUSIONS: A patient-centered relationship between nurses and cancer survivors is essential for therapy adherence and the management of aftercare needs. Training to provide this holistic self-management support is required.

Mirror meetings as a tool to enhance professionals' awareness of the lived experiences of young people with inflammatory bowel disease.

During mirror meetings, professionals were confronted with the experiences of young people (YP) with inflammatory bowel disease to encourage them to improve their transitional care arrangements. The mirror meetings were held under guidance of an independent moderator. YP conversed about their transition experiences, while health care providers listened without interfering. Meetings were audio-recorded and summarized. Qualitative thematic analysis was conducted. Thirty-two YP participated in six mirror meetings with 26 professionals from paediatric and adult care. Professionals received concrete suggestions for improving their transitional care arrangements. These were about holistic care, tailored to individual needs and preferences, attention for mental health and the role of parents and peers. Advice given by YP matched transitional care guidelines' recommendations. Mirror meetings are a powerful tool to enhance professionals' awareness of YP's needs.

Content Validition and Psychometric Evaluation of the Self-efficacy and Performance in Self-management Support Instrument for Physiotherapists.

OBJECTIVE: To develop and psychometrically test the Self-Efficacy and Performance in Self-Management Support instrument for physiotherapists (SEPSS-PT), based on the SEPSS-36, the corresponding instrument for nurses. DESIGN: Instrument development including content validation and psychometric evaluation (construct validity, factor structure, and reliability). SETTING: Data were collected from literature, expertmeetings, and online questionnaire PARTICIPANTS: Next to a comprehensive literature study, experts (self-management experts (n=2); physiotherapists (n=10); patients (n=6)) and physiotherapists and physiotherapy students (n=334), participated in different stages of the study. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Not applicable. A literature study (n=42 reviews) and consultations with physiotherapists and patients identified the specific content for physiotherapy. The Five-A's model and overarching competencies of "supportive partnership attitude", were used to structure the items. Psychometric evaluation of the draft questionnaire (40 items) was tested in a sample of 334 physiotherapists and physiotherapy students from the Netherlands, of whom 33 filled out the questionnaire twice to establish the test-retest reliability. RESULTS: Confirmatory factor analyses revealed satisfactory fit indices for both the 6-factor model and hierarchical model, with best fit for the 6-factor model. The questionnaire discriminated between physiotherapists and physiotherapy students, and between physiotherapists who did or did not consider self-management support important. The overall internal consistency (Cronbach's alpha) was high, both for the self-efficacy and the performance items. In most of the subscales, test-retest intra-class correlation coefficients for both overall self-efficacy and performance were good, but in 3 subscales insufficient for performance. CONCLUSION: The SEPSS-PT questionnaire is a 40-item, Likert-scaled instrument with good content and construct validity, good internal consistency and reliability, and sufficient test-retest reliability. Future research in a larger and more diverse sample could confirm stability and discriminating power.

Impact of Extraction Time During Donation After Circulatory Death Organ Procurement on Kidney Function After Transplantation in The Netherlands.

Background: In The Netherlands, 60% of deceased-donor kidney offers are after donation after circulatory death. Cold and warm ischemia times are known risk factors for delayed graft function (DGF) and inferior allograft survival. Extraction time is a relatively new ischemia time. During procurement, cooling of the kidneys is suboptimal with ongoing ischemia. However, evidence is lacking on whether extraction time has an impact on DGF if all ischemic periods are included. Methods: Between 2012 and 2018, 1524 donation after circulatory death kidneys were procured and transplanted in The Netherlands. Donation and transplantation-related data were obtained from the database of the Dutch Transplant Foundation. The primary outcome parameter was the incidence of DGF. Results: In our cohort, extraction time ranged from 14 to 237 min, with a mean of 62 min (SD 32). In multivariate logistic regression analysis, extraction time was an independent risk factor for incidence of DGF (odds ratio per minute increase 1.008; 95% confidence interval, 1.003-1.013; P = 0.001). The agonal phase, hypoperfusion time, and anastomosis time were not independent risk factors for incidence of DGF. Conclusions: Considering all known ischemic periods during the donation after the circulatory death process, prolonged kidney extraction time increased the risk of DGF after kidney transplantation.

Clinics dedicated to transition preparation for adolescents and young adults with chronic conditions: Factors influencing their use.

To pool resources and reduce inequalities in access to transition preparation for patients, transition clinics were created in France. They are places in hospitals, independent of the usual care departments, offering multiple resources and services for adolescents and their parents. Of the 24 physicians from care departments who were surveyed, half of them do not use transition clinics. The implementation of transition clinics in hospitals did not lead to their adoption by the care departments that needed the most support for transition preparation of their patients. A strategy improving adoption is needed to allow transition clinics to reduce inequalities.

Stress and strain: a qualitative study into the impact of having relatives with addiction problems on students' health and daily lives.

PURPOSE: To explore the impact of having relatives with addiction problems on students' health, substance use, social life, and cognitive functioning, and to establish possible contributions of the participants' gender, type of relationship, and type of addiction of the relative(s). METHODS: A qualitative, cross-sectional study of semi-structured interviews with thirty students from a University of Applied Sciences in the Netherlands who had relatives with addiction problems. RESULTS: Nine major themes were identified: (1) violence; (2) death, illness, and accidents of relatives; (3) informal care; (4) perception of addiction; (5) ill health, use of alcohol and illegal drugs; (6) financial problems; (7) pressured social life; (8) affected cognitive functioning, and(9) disclosure. CONCLUSIONS: Having relatives with addiction problems severely affected the life and health of participants. Women were more likely to be informal carers, to experience physical violence, and to choose a partner with addiction problems than men. Conversely, men more often struggled with their own substance use. Participants who did not share their experiences reported more severe health complaints. It was impossible to make comparisons based on the type of relationship or type of addiction because participants had more than one relative or addiction in the family.

The self-regulation skills instrument in transplantation (SSIt): Development and measurement properties of a self-report self-management instrument.

OBJECTIVE: To develop a self-management instrument for organ transplant recipients that incorporates self-regulations skills and to determine its measurement properties. METHODS: The instrument includes concepts from social cognitive models: problem awareness, attitude, self-efficacy, motivation, social support, goal setting, goal pursuit, skills and goal affect. The measurement properties were evaluated based on the COSMIN guidelines. Face and content validity were determined through patient assessment, Three-Step Test-Interview and expert assessment using the Content Validity Index. Structural validity and reliability were tested using exploratory factor analysis and Cronbach's alpha. Construct validity was tested by comparing subscales with the Health Education Impact Questionnaire (heiQ). RESULTS: After face and content validity assessment 47 items were entered into the exploratory factor analysis. The analysis showed two meaningful factors, with internal consistency of 0.90 and 0.89. Spearman correlations between the subscales and heiQ were moderate (0.55; 0.46). The final version consists of 21 items, divided into two scales: 'Setbacks' and 'Successes'. CONCLUSIONS: The Self-regulation skills instrument in transplantation (SSIt) is a valid and reliable instrument to asses necessary skills for self-management after transplantation and may be useful for other patients as well. PRACTICE IMPLICATIONS: Insight into self-regulation competencies can help healthcare professionals to tailor self-management support.

Impact of the COVID-19 pandemic on students with relatives with addiction problems: A longitudinal qualitative study.

Addiction problems impact not only the persons with these problems but also family members. This study aims to examine the impact of the COVID-19 pandemic on stress, strain on health, study experiences, coping strategies, and access to support of students with relatives with addiction problems. Thirty students, aged 18-30 years, from a University of Applied Sciences in the Netherlands participated in a three-year qualitative longitudinal interview study. One round of individual semi-structured interviews was conducted before the COVID-19 pandemic, and three during the COVID-19 pandemic. Directed Content Analysis was applied, using the Stress-Strain-Information-Coping-Support-model. Four major themes were identified: (1) Increase in stress and strain; (2) Decrease in stress and strain; (3) Coping strategies, and (4) Access to social, professional, and educational support. Before the pandemic, most participants had health problems, especially mental health problems, including problems with their own substance use. Some had study delay. Analysis revealed that during the pandemic, most participants experienced an increase in these problems. This appeared to be related to their living situation: An increase in violence and relapse of relatives increased stress, especially for those living with their relatives. The coping strategies 'standing up' or 'putting up', and a decrease in support-social, professional, and educational-also contributed to stress. A few participants experienced less health problems and study problems. This was related to diminishing addiction problems of relatives, less social pressure, available help, and the coping strategy 'withdrawing'. Withdrawing was much easier for participants who did not live with their relatives with addiction problems. It is recommended to keep schools and universities open during pandemics, offering a safe haven for students at risk in the home situation.

Patient perceived needs and experiences of person-centered care in patients with inflammatory arthritis.

BACKGROUND: Health care is shifting toward a person-centered care (PCC) approach. For implementation of PCC, there may be a special role for nurse practitioners (NPs). PURPOSE: The aim of this study was to explore the patient-perceived levels of and needs for of PCC in inflammatory arthritis patients who visited the NP at the outpatient clinic of an academic hospital in the Netherlands. METHODS: A cross-sectional study was performed. Disease characteristics were inventoried from the patient records. Patients filled out the PCCoc/rheum instrument, an instrument to measure patient perceived PCC, and a questionnaire based on the 14 life areas of the Self-Management Web, extended with areas including pain, fatigue, and night's rest. Participants were asked which life areas caused problems, and whether these problems were discussed. Mean values were calculated for normally distributed data and medians for nonnormally distributed data. RESULTS: Most of the patients had well-controlled disease (86.1%). The mean score of the PCCoc/rheum was 55.3 (SD 8.1). Patients experienced most problems in life areas fatigue (37.3%) and pain (35.3%), these were also the life areas that were most often addressed at consultation. The life areas that gave problems and that were least addressed during consultation were intimate relationships & sexuality (66.7%) and household chores (58.8%). CONCLUSIONS: Despite an overall high level of patient perceived PCC delivered by NPs, patient with low disease activity frequently reported problems in life areas not addressed at consultation. IMPLICATIONS FOR PRACTICE: Implementation of the Self-Management Web and changing the focus of NP consultations may help to improve accommodating individual patient needs.

We mind your step: understanding and preventing drop-out in the transfer from paediatric to adult tertiary endocrine healthcare.

Introduction: Transition from paediatric to adult endocrinology can be challenging for adolescents, their families and healthcare professionals. Previous studies have shown that up to 25% of young adults with endocrine disorders are lost to follow-up after moving out of paediatric care. This poses a health risk for young adults, which can lead to serious and expensive medical acute and long-term complications. Methods: In order to understand and prevent dropout, we studied electronic medical records of patients with endocrine disorders. These patients were over 15 years old when they attended the paediatric endocrine outpatient clinic (OPC) of our hospital in 2013-2014 and should have made the transfer to adult care at the time of the study. Results: Of 387 adolescents, 131 had an indication for adult follow-up within our university hospital. Thirty-three (25%) were lost to follow-up. In 24 of them (73%), the invitation for the adult OPC had never been sent. We describe the failures in logistic processes that eventually led to dropout in these patients. Conclusion: We found a 25% dropout during transfer from paediatric to adult tertiary endocrine care. Of all dropouts, 73% could be attributed to the failure of logistic steps. In order to prevent these dropouts, we provide practical recommendations for patients and paediatric and adult endocrinologists.

Nurse-led self-management support after organ transplantation-protocol of a multicentre, stepped-wedge randomized controlled trial.

BACKGROUND: Recipients of an organ transplantation face a number of challenges and often need to change their health behaviour. Good self-management skills are essential for optimal clinical outcomes. However, few interventions are available to support post-transplant self-management. To fill this gap, we developed a self-management support intervention offered by nurse practitioners. The primary aim of the study is to implement and test the effectiveness of the ZENN intervention in promoting self-management skills among heart, kidney liver and lung transplant recipients in comparison to standard care. The secondary aim is to assess the self-management support skills of nurse practitioners who will deliver the intervention. METHODS: This multi-centre stepped-wedge randomized controlled trial will take place from September 2020 until May 2023. All departments will commence with inclusion of patients in the control period. Each department will be randomly assigned to a start date (step in the wedge) to commence the experimental period. Patients in the control period will receive standard care and will be asked to complete questionnaires at baseline (T0), 6 months (T1) and 12 months (T2), to assess self-management, self-regulation, quality of life and adherence. During the experimental period, patients will receive standard care plus the ZENN intervention and receive the same set of questionnaires as participants in the control period. Nurse practitioners will complete a baseline and follow-up questionnaire to assess differences in self-management support skills. Video recordings of outpatient clinic consultations during the control and experimental periods will determine the differences in nurses' needs-thwarting and needs-supporting skills between the control and experimental period. DISCUSSION: The ZENN intervention could be a useful approach to support patients' self-management skills after organ transplantation and thus promote clinical outcomes as well as avoid adverse events. TRIAL REGISTRATION: Dutch Trial Register NL8469 . Registered on March 19, 2020.

Evaluation of a Nurse-led Aftercare Intervention for Patients With Head and Neck Cancer Treated With Radiotherapy and Cisplatin or Cetuximab.

BACKGROUND: The supportive needs for head and neck cancer (HNC) patients during the vulnerable period after treatment are not always met. Therefore, more professional support regarding physical, social, and psychological care as well as lifestyle is recommended. OBJECTIVE: This study is an evaluation of a nurse-led aftercare intervention to support patients recovering from HNC treatment. METHODS: Intervention group (IG) participants received 2 extra consultations from a nurse practitioner 3 and 9 months after treatment of HNC. A holistic conversational tool, the Self-Management Web, was developed to guide the nurse through the conversation. Primary outcomes were health-related quality of life (HRQoL) and quality of patient-centered care. A secondary outcome was self-management skills. RESULTS: Twenty-seven patients were included in the IG, and 28 were included in the control group. Differences in HRQoL and self-management between the IG and the control group were not statistically significant. For the IG, all domains of the Self-Management Web were perceived important and addressed by the nurse practitioner. CONCLUSION: This holistic nurse-led aftercare intervention was highly appreciated by HNC patients. Although the intervention met the need for support in recovery after treatment, it did not improve HRQoL or self-management skills. IMPLICATIONS OF PRACTICE: For both nurses and patients, the intervention is feasible and acceptable in daily practice. Self-management support for patients after their cancer treatment is of added value and has potential to improve the quality of regular follow-up care.

Evaluation of a Nurse-Led Patient Navigation Intervention: Follow-Up of Patients After Autologous and Allogeneic Stem Cell Transplantation.

BACKGROUND: Complex survivorship cancer care requires nurse-led interventions. Therefore, a nurse-led patient navigation intervention was developed in which trained cancer nurses gave advice and referred to other professionals during the process of recovery and rehabilitation of hematopoietic stem cell transplantation (HSCT) patients. OBJECTIVE: The aim of this study was to understand the nature and effect of this nurse-led information and referral intervention. METHODS: Of the 199 included patients in the intervention group, 75 completed the quality of life, quality of care, self-efficacy, and self-management behavior questionnaires at baseline and at 6 and 12 months after HSCT. A historical control group of 62 patients completed the same questionnaires 12 months after HSCT. In addition, patients' experiences with the intervention were evaluated in 2 focus groups. RESULTS: Patients emphasized the holistic approach of the cancer nurses and the opportunity to discuss psychosocial domains of life. Within the intervention group, a statistically significant effect on quality of life was demonstrated over time. The differences in quality of life, self-efficacy, and self-management were not significant between the intervention group and control group. CONCLUSION: The holistic focus of this nurse-led intervention proved to be acceptable to the HSCT patients and promising in supporting the (complex) challenges that these patients face during their process of recovery and rehabilitation. IMPLICATIONS FOR PRACTICE: Nurse-led patient navigation interventions with a holistic approach when included in the daily practice of complex survivorship cancer care can support HSCT patients' information and referral needs during their rehabilitation.

The added value of transition programs in Dutch diabetes care: A controlled evaluation study.

PURPOSE: The desirability of evaluating transition programs is widely acknowledged. This study aimed to explore the added value of transitional care investments for young adults with type 1 diabetes mellitus. DESIGN AND METHODS: Based on qualitative data, two groups of diabetes teams were created through cluster analysis: paying more (HI-ATT) versus less attention (LO-ATT) to transitional care. Retrospective controlled evaluation included chart reviews on healthcare use and clinical outcomes; and a survey on young adults' experiences, satisfaction with care, and self-management skills. RESULTS: Data from 320 patients in fifteen diabetes teams were collected; 123 young adults (38.4%) completed a questionnaire. Self-reported outcomes showed that young adults treated by a HI-ATT team felt better prepared for transfer (p < .05). Self-management outcomes did not differ between groups. HI-ATT teams had more scheduled consultations in the year after transfer (p < .05); only 10.6% of all measurements had reached targeted HbA1c scores. CONCLUSIONS: Current transitional care investments in Dutch diabetes care did not lead to notable improvements in experiences and outcomes, except for preparation for transfer. The period after transfer, however, is just as important. Attention is required for parent involvement. PRACTICE IMPLICATIONS: Transitional care investments should extend beyond the transfer. By educating young adults about the importance of regular clinic attendance and introducing additional person-centered consultations in adult care, nurses may help ensure continuity of care. Nurses could also introduce support programs for parents to prepare for the transition and their change in role, taking into account their continuing partnership.

Active involvement of young people with T1DM during outpatient hospital consultations: Opportunities and challenges in transitional care services.

OBJECTIVE: Little is known about active involvement of young people (YP) with type 1 diabetes (T1DM) in transitional care. This study aims to gain insight into patient-provider interactions during outpatient hospital consultations. METHODS: Semi-structured observations (n = 61) of outpatient consultations with YP with T1DM (15-25 years) treated in 12 hospitals in the Netherlands. The consultations concerned pediatric care (n = 23), adult care (n = 17), and joint consultations (n = 21). Thematic data analysis focused on whether professionals engaged in open, in-depth conversations; used motivational interviewing techniques; involved YP in shared decision-making; and addressed non-medical topics. RESULTS: Apart from some good examples, the healthcare professionals generally had difficulty interacting adequately with YP. They paid little attention to the YP's individual attitudes and priorities regarding disease management; non-medical topics remained generally underexposed. Conversations about daily life often remained shallow, as YP's cues were not taken up. Furthermore, decisions about personal and health-related goals were often not made together. CONCLUSION: By adopting a more person-centered approach, professionals could empower YP to take an active role in their diabetes management. PRACTICE IMPLICATIONS: Using a structured conversation model combined with a tool to encourage YP's agenda-setting and shared decision-making is recommended for more person-centered transitional care in T1DM.

Transfer in care and diabetes distress in young adults with type 1 diabetes mellitus.

INTRODUCTION: Diabetes distress (DD) is a serious problem in many people with diabetes and is associated with unfavorable clinical and psychosocial outcomes in children and adults. Little is known about DD in young adults (YAs) with type 1 diabetes mellitus (T1DM) who transferred to adult care. This study aimed to explore the differences between YAs with/without DD regarding transfer experiences, self-management and health-related quality of life (HRQoL). RESEARCH DESIGN AND METHODS: Cross-sectional online questionnaire completed by YAs with T1DM after transfer. DD was measured with the short-form Problem Areas in Diabetes scale. Descriptive analyses were followed by t-tests and χ2 tests to explore differences between the groups with/without DD. Effect sizes were calculated. RESULTS: Of 164 respondents with mean age 22.7 (±1.56) years, 60.7% was female. The total sample scored low on DD (6.52±4.67; range: 0-17), but 57 (34.8%) had a score ≥8, indicating DD. YAs with DD felt less ready to transfer to adult care than those without DD and scored lower on alliance between pediatric and adult care and reception in adult care. They also reported poorer self-management skills and lower HRQoL in all domains of functioning. CONCLUSIONS: More than one-third YAs experienced DD after transfer; this was associated with less favorable transition, self-management and psychosocial outcomes. Transfer in care seems to be a source of DD. Systematic screening on DD and attention for YAs' worries is recommended in both pediatric and adult care.

The impact of type 1 diabetes on young adults' health-related quality of life.

BACKGROUND: Young adulthood is a challenging period for people with diabetes mellitus type 1 (T1DM) as they are facing multiple life transitions while managing a demanding disease. This poses a risk for impaired health-related quality of life (HRQOL). We assessed HRQOL in a cohort of young adults with T1DM in the Netherlands, and compared outcomes with those of Dutch norm groups of healthy young adults and young adults with a chronic disease. METHODS: We analyzed data collected in a larger evaluation study on transitional care for young adults with T1DM in a nationwide sample in the Netherlands, including twelve participating hospitals. These data had been obtained from online questionnaires completed by young adults with T1DM after they had transferred to adult care. HRQOL was self-reported with the Pediatric Quality of Life Inventory for young adults (PedsQL-YA). RESULTS: One hundred and sixty-five young adults with T1DM participated (44.2% response); and they scored significantly worse than did healthy peers on all domains of HRQOL, except social functioning. Particularly, functioning at school or work was worse than that of the norm group. The study group's HRQOL-scores were comparable to norm scores of young adults with chronic diseases, although the physical and social functioning of young people with T1DM was better. One quarter (26.1%) of all young adults with T1DM reported fatigue. CONCLUSIONS: During transition to adulthood, young adults with T1DM struggle to maintain a balance between the demands of managing a disease and their life. Many of them encounter problems at work or school, and suffer from fatigue. These findings underscore the need to regularly assess HRQOL, and to discuss work- and education-related issues in clinical practice.

Profiles of family caregivers of patients at the end of life at home: a Q-methodological study into family caregiver' support needs.

BACKGROUND: Family caregivers of patients at the end of life often experience care-related burden. To prevent caregiver burden and to enhance the capacity to provide care it is important to have insight in their support needs. The purpose of this study was to identify profiles of family caregivers who provide care to patients at the end of life at home. METHODS: A Q-methodological study was conducted in which family caregivers ranked 40 statements on support needs and experiences with caregiving. Thereafter they explained their ranking in an interview. By-person factor analysis was used to analyse the rankings and qualitative data was used to support the choice of profiles. A set of 41 family caregivers with a variety on background characteristics who currently or recently provided care for someone at the end of life at home were included. RESULTS: Four distinct profiles were identified; profile (1) those who want appreciation and an assigned contact person; profile (2) was bipolar. The positive pole (2+) comprised those who have supportive relationships and the negative pole (2-) those who wish for supportive relationships; profile (3) those who want information and practical support, and profile (4) those who need time off. The profiles reflect different support needs and experiences with caregiving. CONCLUSIONS: Family caregivers of patients at the end of life have varying support needs and one size does not fit all. The profiles are relevant for healthcare professionals and volunteers in palliative care as they provide an overview of the main support needs among family caregivers of patients near the end of life. This knowledge could help healthcare professionals giving support.

Value of an outpatient transition clinic for young people with inflammatory bowel disease: a mixed-methods evaluation.

OBJECTIVE: Developing and evaluating effective transition interventions for young people (16-25 years) with inflammatory bowel disease (IBD) is a high priority. While transition clinics (TCs) have been recommended, little is known about their operating structures and outcomes. This study aimed to gain insight into the value of a TC compared with direct handover care. DESIGN: Controlled mixed-methods evaluation of process outcomes, clinical outcomes and patient-reported outcomes. SETTING: Two outpatient IBD clinics in the Netherlands. PARTICIPANTS: Data collection included: semistructured interviews with professionals (n=8), observations during consultations with young people (5×4 hours), medical chart reviews of patients transferred 2 to 4 years prior to data collection (n=56 in TC group; n=54 in control group) and patient questionnaires (n=14 in TC group; n=19 in control group). OUTCOMES: Data were collected on service structures and daily routines of the TC, experienced barriers, facilitators and benefits, healthcare use, clinical outcomes, self-management outcomes and experiences and satisfaction of young people with IBD. RESULTS: At the TC, multidisciplinary team meetings and alignment of care between paediatric and adult care providers were standard practice. Non-medical topics received more attention during consultations with young people at the TC. Barriers experienced by professionals were time restrictions, planning difficulties, limited involvement of adult care providers and insufficient financial coverage. Facilitators experienced were high professional motivation and a high case load. Over the year before transfer, young people at the TC had more planned consultations (p=0.015, Cohen's d=0.47). They showed a positive trend in better transfer experiences and more satisfaction. Those in direct handover care more often experienced a relapse before transfer (p=0.003) and had more missed consultations (p=0.034, Cohen's d=-0.43) after transfer. CONCLUSION: A TC offer opportunities to improve transitional care, but organisational and financial barriers need to be addressed before guidelines and consensus statements in healthcare policy and daily practice can be effectively implemented.

Transitional psychiatry in the Netherlands: Experiences and views of mental health professionals.

BACKGROUND: The majority of psychopathology emerges in late adolescence and continues into adulthood. Continuity of care must be guaranteed in this life phase. The current service configuration, with a distinction between child/adolescent and adult mental health services (CAMHS and AMHS), impedes continuity of care. AIM: To map professionals' experiences with and attitudes towards young people's transition from CAMHS to AMHS and the problems they encounter. METHODS: An online questionnaire distributed among professionals providing mental health care to young people (15-25 years old) with psychiatric disorders. RESULTS: Five hundred and eighteen professionals completed the questionnaire. Decision-making regarding transition is generally based on the professional's own deliberations. The preparation was limited to discussing changes with the adolescent and parents. Most transition-related problems are experienced in CAMHS, primarily with regard to collaboration with AMHS. Respondents report that the developmental age should be leading in the transition-decision making process and that developmentally appropriate services are important in bridging the gap. CONCLUSION: Professionals in CAMHS and AMHS experience problems in the preparation of, and the collaboration during transition. The problems are related to coordination, communication and rules and regulations. Professionals attach importance to improvement through an increase in flexibility and more specialist services for youth.