Healthcare service use in paediatric inflammatory bowel disease: a questionnaire on patient and parent care experiences in Germany.

BACKGROUND: Paediatric inflammatory bowel disease (PIBD) patients require chronic care over the lifespan. Care for these patients is complex, as it is adapted for childrens' life stages and changing disease activity. Guideline based care for this patient group recommends a multidisciplinary approach, which includes in addition to paediatric gastroenterologists, nutritional and psychological care services. For PIBD patients, a discrepancy between available guideline-based multidisciplinary care and actual care has been found from the provider side, but to what extent patients experience this is unclear. OBJECTIVES: To identify which healthcare services were used and whether socio-demographic, geographic or disease related factors have an influence on health service utilisation. METHODS: A standardised questionnaire (CEDNA) was distributed amongst parents of children aged 0-17 diagnosed with PIBD and adolescents (aged 12-17) with a PIBD. Items related to health service use were analysed, these included specialist care, additional care services, reachability of services and satisfaction with care. Logistic regression models on additional service use were calculated. Service availability and reachability maps were made. RESULTS: Data was analysed for 583 parent and 359 adolescent questionnaires. Over half of the respondents had Crohn's Disease (CD, patients n = 186 parents n = 297). Most patients and parents reported their paediatric gastroenterologist as their main care contact (patients 90.5%; parents 93%). Frequently reported additional services were nutritional counselling (patients 48.6%; parents 42.2%) and psychological support (patients 28.1%; parents 25.1%). Nutritional counselling was more frequently reported by CD patients in both the patient (OR 2.86; 95%CI 1.73-4.70) and parent (OR 3.1; 95%CI 1.42-6.71) sample. Of the patients, 32% reported not using any additional services, which was more likely for patients with an illness duration of less than one year (OR 3.42; 95%CI 1.26-9.24). This was also observed for the parent population (OR 2.23; 95%CI 1.13-4.4). The population-based density of specialised paediatric gastroenterologists was not proportionate to the spatial distribution of patients in Germany, which may have an influence on access. CONCLUSIONS: Parents and children reported highly specialised medical care. Multidisciplinary care offers do not reach the entire patient population. Access to multidisciplinary services needs to be ensured for all affected children.

The processes involved in the establishment of user-provider partnerships in severe psychiatric illnesses: a scoping review.

PURPOSE: With the rising relevance of person-centred care, initiatives towards user-led decision making and designing of care services have become more frequent. This designing of care services can be done in partnership, but it is unclear how. The aim of this scoping review was to identify for mental health services, what user-provider partnerships are, how they arise in practice and what can facilitate or hinder them. METHODS: A scoping review was conducted to obtain a broad overview of user provider partnerships in severe mental illness. Data was inductively analysed using a conventional content analysis approach, in which meaning was found in the texts. RESULTS: In total, 1559 titles were screened for the eligibility criteria and the resulting 22 papers found relevant were analysed using conventional content analysis. The identified papers had broad and differing concepts for user-provider partnerships. Papers considered shared decision making and user-involvement as partnerships. Mechanisms such as open communication, organisational top-down support and active participation supported partnerships, but professional identity, power imbalances and stress hindered them. Users can be impeded by their illness, but how to deal with these situations should be formalised through contracts. CONCLUSION: The field of research around user-provider partnerships is scattered and lacks consensus on terminology. A power imbalance between a user and a provider is characteristic of partnerships in mental healthcare, which hinders the necessary relationship building allowing partnerships to arise. This power imbalance seems to be closely linked to professional identity, which was found to be difficult to change.