[Transitional psychiatry in the Netherlands: experiences and views of mental health professionals]. / Transitiepsychiatrie in Nederland: ervaringen en opvattingen van ggz-professionals.

BACKGROUND: Psychopathology manifests itself primarily in late adolescence and continues into adulthood. Continuity of care is essential during this phase of life. The current care service distinguishes between child/adolescent (CAMHS) and adult mental health services (AMHS). The separation of services can interfere with the continuity of care.
AIM: To map professionals' experiences of and views on the transition and associated problems that young people can experience as they are transferred from CAMHS to AMHS.
METHOD: We distributed an online questionnaire among professionals providing mental health care to young people (aged 15-25) with psychiatric problems.
RESULTS: The questionnaire was completed by 518 professionals. Decisions relating to transition were generally based on the professional's own deliberations. The preparation consisted mainly of discussing changes with the adolescent and his or her parents. The majority of transition-related problems were experienced in CAMHS, particularly with regard to collaboration with AMHS. Respondents were of the opinion that the developmental age ought to be the determining factor in the decision-making process with regard to transition and they considered it important that developmentally appropriate services should be available in order to bridge the gap.
CONCLUSION: Professionals in CAMHS and AMHS are encountering problems in preparing the transitional phase and in organising the required structural collaboration between the two separate services. The problems relate mainly to coordination, communication and rules and regulations. Professionals are keen to improve the situation and want to see greater flexibility. In their view, there should be a wider range of specialised facilities for young people, enabling them to benefit from transitional psychiatry.

Developing from child to adult: Risk factors for poor psychosocial outcome in adolescents and young adults with epilepsy.

INTRODUCTION: Childhood-onset epilepsy during the years of transition to adulthood may affect normal social, physical, and mental development, frequently leading to psychosocial and health-related problems in the long term. OBJECTIVE: This study aimed to describe the main characteristics of patients in transition and to identify risk factors for poor psychosocial outcome in adolescents and young adults with epilepsy. METHODS: Patients with epilepsy, 15-25years of age, who visited the Kempenhaeghe Epilepsy Transition Clinic from March 2012 to December 2014 were included (n=138). Predefined risk scores for medical, educational/occupational status, and independence/separation/identity were obtained, along with individual risk profile scores for poor psychosocial outcome. Multivariate linear regression analysis and discriminant analysis were used to identify variables associated with an increased risk of poor long-term psychosocial outcome. RESULTS: Demographic, epilepsy-related, and psychosocial variables associated with a high risk of poor long-term outcome were lower intelligence, higher seizure frequency, ongoing seizures, and an unsupportive and unstable family environment. Using the aforementioned factors in combination, we were able to correctly classify the majority (55.1%) of the patients regarding their risk of poor psychosocial outcome. CONCLUSION: Our analysis may allow early identification of patients at high risk of prevention, preferably at pretransition age. The combination of a chronic refractory epilepsy and an unstable family environment constitutes a higher risk of transition problems and poor outcome in adulthood. As a consequence, early interventions should be put into place to protect youth at risk of poor transition outcome.

A literature review of the Dutch debate on the nurse practitioner role: efficiency vs. professional development.

AIM: To explore the debate on the development of the nurse practitioner profession in the Netherlands. BACKGROUND: In the Netherlands, the positives and negatives of nurse practitioners working in the medical domain have been debated since the role was introduced in 1997. The outcome of the debate is crucial for nurse practitioners' professional development and society's justification of their tasks. METHOD: Review of 14 policy documents, 35 opinion papers from nurses, 363 opinion articles from physicians and 24 Dutch research papers concerning nurse practitioners from 1995 to 2012. RESULTS: Two discourses were revealed: one related to efficiency and one to the development of the profession. In both, the nurse practitioner role was presented as a solution for healthcare and workforce problems, while arguments differed. The efficiency discourse seemed most influential. Opinions of nurse practitioners were underrepresented; taking up new responsibilities was driven by the wish to improve patient care. While most physicians were willing to delegate tasks to nurse practitioners, they wished to retain final responsibility for medical care. LIMITATIONS: All available publications were extensively studied, which could not include unpublished policy documents from the government or influential parties. This may have led to some selectivity. CONCLUSION: The case of the Netherlands shows that nurses in developing their advanced role are facing barriers, similar to those in other countries. The dominance of efficiency arguments combined with protection of medical autonomy undermines the development towards nursing care that really benefits patients. IMPLICATIONS FOR NURSING AND HEALTH POLICY: Nurse practitioners should strive to obtain positions in which they are allowed to make their own decisions and wise use of healthcare resources for the good of patients and society. Nurse practitioners should aim to become members of influential healthcare Boards in their countries, in which they can raise their voices and be involved in policy making.

Gaps in transitional care: what are the perceptions of adolescents, parents and providers?

BACKGROUND: Several studies have investigated preferences and experiences of adolescents with different chronic conditions and their parents. Some have included the provider's perspective. Studies comparing the three perspectives on satisfaction with (transitional) care for different chronic conditions, however, are lacking. The main aim of this paper was to explore differences and similarities in perspectives between adolescents with chronic conditions, their parents and providers on transitional care. A secondary aim was to explore the extent to which such perspectives are disease-specific. METHODS: This quantitative study included 127 adolescents with juvenile rheumatoid arthritis (JRA), neuromuscular disorder with chronic ventilation (NMD), or diabetes Type I; 166 parents; and 19 care providers. To assess the experiences and perceptions of adolescents and parents on transitional care, we used the 'Mind the Gap' instrument. The survey for providers included a checklist of shortcomings in transitional care. RESULTS: Adolescents rate current care significantly worse than parents on opportunities to make their own decisions and be seen without parents present. Adolescents also rated providers' current social skills lower than parents. Adolescents are more satisfied than their parents about transitional care process aspects such as co-ordination and communication between providers, but both groups indicated that the care process offers most room for improvement. Providers reported other aspects such as adolescents' lack of responsibility with regard to self-care and parents' difficulties with ceding control to their children. When looking at the three disease groups - JRA, NMD, diabetes, we found only small differences. According to providers, shortcomings in the care process with respect to guidelines, protocols and co-ordination are most prevalent. CONCLUSION: Adolescents, parents and providers all report that there is room for improvement with regard to aspects of the care delivery process in transitional care. With respect to disease-specific issues we only found small differences.

Crossing the transition chasm: experiences and recommendations for improving transitional care of young adults, parents and providers.

BACKGROUND: Transition from paediatric to adult healthcare has received little attention in the Netherlands. This study aimed to: (i) map experiences with the transfer to adult care of young adults with chronic conditions; and (ii) identify recommendations for transitional care of young adults, their parents and healthcare providers. METHODS: Semi-structured interviews with 24 young adults after transfer (aged 15-22 years; diagnosed with haemophilia, diabetes mellitus, spina bifida, congenital heart disorders, cystic fibrosis, juvenile rheumatoid arthritis or sickle cell disease), 24 parents and 17 healthcare providers. Thematic analysis was performed. RESULTS: Only the haemophilia department offered a structured transition programme, most patients had not been prepared for transition. Experiences and views of patients, parents and professionals mainly overlapped and were condensed into four core themes. Two are related to moving to adult care: (1) 'leaving paediatric care is a logical step'. Leaving familiar surroundings was harder for parents than for young adults who displayed a positive 'wait-and-see' attitude; and (2) 'transition is complicated by cultural gaps between paediatric and adult services'. Young adults and parents felt lost after transfer and recommended their peers 'to be alert and involved'. Providers also recognized the cultural chasm between both services and worried about non-compliance, lost to follow-up and lack of independence. Two other themes indicated priorities for improvement: (3) 'better patient and parent preparation' for differences between healthcare settings and for new roles and responsibilities with respect to self-management; and (4) 'more collaboration and personal links' between paediatric and adult care providers. CONCLUSIONS: Action is required to cross the chasm between paediatric and adult-oriented care. Preparation for transition should start early and focus on strengthening adolescents' independency without undermining parental involvement. Building bridges between services, gaining trust and investing in new personal relations is a challenge for all parties involved: transition is about responding and bonding.

Long-term effects of a multidisciplinary transition intervention from paediatric to adult care in patients with epilepsy.

PURPOSE: To evaluate the long-term effects of a multidisciplinary transition intervention compared to the impact of patient-related intrinsic factors on the improvement in medical and psychosocial outcome. METHODS: All patients who visited our multidisciplinary Epilepsy Transition Clinic between March 2012 and September 2014 were invited to participate (n=114). Patients were sent one questionnaire and informed consent was obtained. Questions included the patient's level of functioning on three transitional domains and a list with medical health care workers. Previously defined scores on three transitional domains and the risk profile score were re-evaluated. Past and current patient characteristics were compared using descriptive statistics. Discriminant analyses were used to determine the influence of patient-related intrinsic factors (defined as the risk factors from our previous study) and a multidisciplinary transition intervention on the improvement of medical and psychosocial outcome. RESULTS: Sixty-six out of 114 invited participants (57.9%) completed the questionnaire. Discriminant analyses showed that the patient-related intrinsic factors combined proved a strong predictor for improvement in medical outcome (72.7%) and relatively strong for educational/vocational outcome (51.5%). The transition interventions are a relative strong predictor of improvement in medical outcome (56.1%), educational/vocational outcome (53.0%) and improvement in the overall risk score (54.5%). CONCLUSION: Based on the overall improvement of psychosocial outcome in most patients, and the influence of a transition intervention on medical, educational/vocational outcome and the overall risk score, it is likely that adolescents with epilepsy benefit from visiting a multidisciplinary epilepsy transition clinic.

Kidney transplant patients' attitudes towards self-management support: A Q-methodological study.

OBJECTIVE: Kidney transplant recipients face many self-management challenges. We aimed to identify profiles of attitudes towards self-management support (SMS) shortly after kidney transplantation. METHODS: Profiles were generated using Q-methodology: In face-to-face interviews participants rank-ordered opinion statements on aspects of SMS according to agreement. Socio-demographic and medical characteristics were assessed using a questionnaire. By-person factor analysis was used to analyze the rankings and qualitative data was used to support choice of profiles. The resulting factors represent clusters of patients with similar attitudes towards SMS. RESULTS: Forty-three patients (mean age=56; 77% male) participated. Four profiles were identified: (A) transplant-focused and obedient; (B) holistic and collaborative; (C) life-focused and self-determined; and (D) was bipolar. The positive pole (D+) minimalizing and disengaged and the negative pole (D-) coping-focused and needy represent opposing viewpoints within the same profile. Socio-demographic and medical characteristics were not related to profile membership. DISCUSSION: Each profile represents a specific attitude on post-transplant life, responsibility for health and decision-making, SMS needs, and preferences for SMS. PRACTICAL IMPLICATIONS: Patients vary in their attitude, needs and preferences for SMS indicating the necessity of providing personalized support after kidney transplantation. Health professionals should explore patients' SMS needs and adapt support accordingly.

Evaluation of a multidisciplinary epilepsy transition clinic for adolescents.

INTRODUCTION: The main goal of the transition clinic is to explore and optimize medical issues during transition from adolescence to adulthood, and to ease the transition into adult care. However, only limited data on the process and outcomes of transitional care in clinical practice are available. OBJECTIVE: To describe the process and outcomes of an Epilepsy Transition Clinic in a tertiary referral center in The Netherlands. METHODS: Data were collected from patients with epilepsy (aged 15-25 years), who visited the transition clinic between March 2012 and September 2014. RESULTS: The Epilepsy Transition Clinic is staffed with a multidisciplinary team including a neurologist/epileptologist, clinical neuropsychologist, a social worker and an educationalist/occupational counselor, all with knowledge of paediatric and adult medical and developmental issues. In total, 117 patients with epilepsy were included in the analysis. After consultation, 89 patients received a diagnostic work-up (76.1%), change in AED prescription (n = 64, 54.7%), or consultation/tailored advice (n = 73, 62.4%). In fourteen patients (12.0%) the epilepsy diagnosis was changed. Nineteen patients (16.2%) had complete epilepsy remission for over one year. Forty-three patients (36.8%) were referred to adult care. CONCLUSION: This study describes a multidisciplinary epilepsy transition clinic staffed by a neurologist/epileptologist, neuropsychologist, a social worker and an educationalist/occupational counselor. Diagnostic work-up and evaluation of psychosocial and educational/vocational status during adolescence are strongly recommended.

Caring for caregivers: experiences and evaluation of interventions for a palliative care team.

Palliative care is a fairly recent development in The Netherlands. The first palliative unit in a hospital setting was the Palliative Care Unit (PCU) in the Dr Daniel den Hoed Clinic, a specialized oncology hospital, now part of the Academic Hospital Rotterdam (AZR-Daniel). This PCU was designed to function as an academic laboratory, where palliative care concepts are being developed, put into practice, and evaluated. It's mission was to put the patient first in mind, heart and soul. Right from the start, special attention was paid to the implementation a system of 'care for caregivers' in order to support the staff of the PCU in caring for the terminally ill and to prevent burnout. A process evaluation has been carried out with a special focus on the effects of the implementation of the new unit on the wellbeing of the interdisciplinary team of caregivers during the first year of its existence and on the experiences with a residential training preceding the start of patient care activities and the weekly staff support meetings. In the second half of the first year, the PCU staff experienced increased levels of job-related stress. Most stress was attributed to organizational factors, related to management issues but also to lack of institutional support. Teamwork also contributed to stress within the interdisciplinary team. Direct patient care activities also had some impact on experienced stress levels, through a heavy work-load of complex care, a shortage of staff and an experienced lack of competence. While the staff support activities were designed to give emotional support and deal with death and bereavement, these issues did not arise as major problems. As a consequence, the staff support in the PCU was perhaps less successful than it could have been. However, the high stress levels of this innovative palliative team warrant attention. We discuss how support meetings could be a more effective way of caring for staff. They should be accompanied by adequate resources, a supportive management structure, and an extensive educational program.

Why a carefully designed, nurse-led intervention failed to meet expectations: the case of the Care Programme for Palliative Radiotherapy.

PURPOSE OF THE RESEARCH: Implement and evaluate the Care Programme for Palliative Radiotherapy (CPPR) in the Outpatient Clinic of the Department of Radiotherapy, Erasmus MC-Cancer Institute, Rotterdam, The Netherlands. METHODS: Participatory Action Research (PAR). Qualitative descriptive design: participatory observations, semi-structured interviews with patients and professionals and focus groups with professionals; content analysis of documents. SAMPLE: Patients with impending paraplegia due to metastatic spinal cord compression, nurse practitioners (NPs), nurse manager, staff and ward nurses, radiographers, radiotherapists and medical doctors. KEY RESULTS: After a shift from inpatient to outpatient radiotherapy treatment, patients and healthcare professionals perceived shortcomings in the oncological chain care. The CPPR was developed in a participative way giving a key role to the NP. Evaluation after implementation of the programme showed that patients and professionals were predominantly positive about its effects. However, implementation was not sustained due to lack of institutional and managerial support. CONCLUSIONS: The technological innovation far preceded the organisational changes needed to provide innovative, patient-centred care. Implementing this programme with a central role for the NP was seen as the solution to the problems identified. However, in spite of the systematic approach using PAR, the programme was not successful in bringing about sustained improvements. NPs fulfil a valuable role in the care and support of patients with palliative care needs but need institutional support. More attention should have paid to the organisational context. Involve all relevant actors; use a participatory approach to enhance commitment; ensure the support of management during the whole project.