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.

Effectiveness of provision of outdoor mobility services and devices in The Netherlands.

OBJECTIVE: To answer the following questions: What are the problems encountered by people with outdoor mobility disabilities? What solutions are being offered to them in The Netherlands? How effective are these solutions? How responsive is the IPPA instrument (Individually Prioritized Problem Assessment)? DESIGN: Analysing the results of a follow-up study using the IPPA instrument. SETTING: The Dutch Service for the Disabled Act (SDA, in Dutch: WVG) provision system. This act is responsible for the provision of mobility aids and home adaptations. SUBJECTS: Fifty-nine people with outdoor mobility disabilities. INTERVENTIONS: The provision of outdoor mobility service and devices. MAIN OUTCOME MEASURES: Effectiveness of provisions as measured using IPPA (i.e., the degree to which activities have become less difficult to perform), effect size of IPPA with this intervention. RESULTS: Problems identified by clients are very diverse and specific but can be classified fairly well on the basis of the International Classification of Functioning, Disability and Health (ICF); in the main, the solutions they are provided with are very similar and generic. Effectiveness is excellent at a group level, but insufficient for some at an individual level. The IPPA instrument is highly responsive in this setting. Most mobility problems respondents identified, although very individual and specific, were related to shopping, social visits or leisure activities. These specific sets of problems were solved using 'standard', generic solutions. CONCLUSIONS: The Dutch provision system should be more 'demand oriented' and less 'supply oriented'. IPPA turns out to be a useful, structured and individual-oriented method to evaluate service delivery.

Client satisfaction with service delivery of assistive technology for outdoor mobility.

PURPOSE: In the decentralized Dutch service delivery system, client satisfaction levels for the provision of assistive technology (AT) for outdoor mobility for elderly and disabled persons was measured to investigate whether or not differences exist between local service delivery systems and if so, how these can be explained. METHOD: In June 1999 a postal questionnaire was sent to a random sample of 973 adult users from three local authorities who had received their AT in 1998. Client satisfaction with the service delivery process was measured using seven items (alpha=0.88) added to the 12 items of the QUEST 2.0 scale. Demographic, health status and service delivery outcome characteristics were also measured. RESULTS: The response was 57%, 503 respondents were included in the analysis (mean age 71 years, 68% women). The health status of the respondents was very poor. The characteristics of the clients were comparable between local authorities but differences were found in the provision of AT. Whilst the overall satisfaction was high (1.8) a difference was found between local authorities. The percentage of clients who were 'not completely satisfied' with aspects of the service delivery process varied from 8% to 30%. One of the most important factors involved in the explanation of differences in satisfaction levels between local authorities (R(2)=11.4%) is that of 'delivery time'. CONCLUSION: Differences in clients' satisfaction between service delivery systems do exist and are determined by 'delivery time', 'user opinion', 'access' and 'quality of information'.

Quality of regional individual needs assessment agencies regulating access to long term-care services: a client perspective.

PURPOSE: To determine if and how the outcome quality from a client perspective is related to process characteristics and structure of Regional Individual Needs Assessment Agencies (RIOs) regulating access to long-term care services in The Netherlands. THEORY: Because of decentralised responsibilities, ultimo 1999 85 RIOs were set up. RIOs differ in their structural and process characteristics. This could lead to differences in client quality. Insight into factors relating to client quality (e.g. client satisfaction) can improve the needs assessment process. METHODS: Eighteen RIOs participated in this study. These RIOs each selected 120 clients, filled in forms about their needs assessment procedures and sent them a questionnaire assessing judgements, experiences and satisfaction with the RIO. RESULTS: We received 1916 RIO-forms and 1062 client questionnaires. Eighty-two percent of the clients were satisfied with the RIO, the percentages not satisfied clients varied from 10 to 29% among items and working procedures. Satisfaction is mostly related to what is actually done for the client. Information aspects and providing choices are important determinants of client quality with the RIO. CONCLUSION: In improving quality seen from a client perspective, one should focus on what is actually done for the client, rather than looking at the RIOs structure.