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Background Patient and Public Involvement (PPI) of young people with a chronic condition (YPCC) receives increasing attention. However, evidence of its impact is lacking. This study explores the impact of PPI on outcomes of projects in health and social care, using quantitative measures. Methods Data were collected from projects funded by a 4-year participatory program addressing the social position of YPCC. These projects addressed challenges associated with, for example, going to college with a physical disability, transitions in care and finding a job. Project coordinators filled out project reports with questions about PPI, that is, to what extent were YPCC involved, were they involved as co-deciders and were they involved in developing the project idea. YPCC filled out questionnaires with questions about PPI, that is, the number of PPI activities and self-perceived importance for the project. They also answered questions about the influence of the project on their social position. Based on these questions, a project outcome scale was developed. Results The data concerned 17 projects and 146 YPCC. Variation existed in project outcomes, of which 27% was associated with differences between projects. Using multilevel analyses, a significant relation was found between the self-perceived importance of YPCC for the project and the project outcomes they experience (0.232, p < 0.01). There was no significant association with the other PPI variables. Conclusions This study provided some first quantitative evidence that PPI has a positive impact on the YPCC involved. It is suggested that the meaningfulness of PPI matters more to them than the number of activities and amount of influence provided to YPCC. We strongly recommend conducting more research that critically examines impact of PPI.

BackgroundVarious north-western European health-care systems encourage patients to make an active choice of health-care provider. This study explores, qualitatively, patients' hospital selection processes and provides insight into the reasons why patients do or do not make active choices.MethodsSemi-structured individual interviews were conducted with 142 patients in two departments of three Dutch hospitals. Interviews were recorded, transcribed and analysed in accordance with the grounded theory approach.ResultsThree levels of choice activation were identified – passive, semi-active and active. The majority of the patients, however, visited the default hospital without having used quality information or considered alternatives. Various factors relating to patient, provider and health-care system characteristics were identified that influenced patients' level of choice activation. On the whole, the patients interviewed could be classified into five types with regard to how they chose, or ‘ended up at’ a hospital. These types varied from patients who did not have a choice to patients who made an active choice.ConclusionsA large variation exists in the way patients choose a hospital. However, most patients tend to visit the default without being concerned about choice. Generally, they do not see any reason to choose another hospital. In addition, barriers exist to making choices. The idea of a patient who actively makes a choice originates from neoclassical microeconomic theory. However, policy makers may try in vain to bring principles originating from this theory into health care. Even so, patients do value the opportunity of attending ‘their’ own hospital.

Background: In research on quality of care, the experiences of children and (pre)adolescents are usually assessed by asking their parents. However, these young patients may have preferences of their own, and their experiences do not necessarily concur with those of their parents. Therefore, our research aimed to give young patients an opportunity to speak up for themselves. Methods: Focus group meetings and online focus groups were organized for two age groups (8–11 and 12–15 years) of young patients from two Dutch rehabilitation centres, with the use of a tailored interview technique. The feasibility and applicability of both types of focus groups were assessed. Results: For both types of focus groups, recruitment proved a major problem. The focus group meetings with (pre)adolescents proved both feasible and applicable in obtaining information regarding the preferences and experiences towards rehabilitation care. Regarding children's meetings, there were mixed results. The setting suited most of them, but some were more anxious. In general, online focus groups were less successful than expected for both age groups. Conclusions: Possibilities for enhancing the recruitment rate should be considered, as the low participation rates limited generalizability of focus group results. The tailored design proved useful for obtaining relevant input from (pre)adolescents through meetings, but, especially for children, repeated meetings or other locations (e.g. at home) could be considered. This may make participants more at ease. For both age groups, the online focus groups proved far less useful, in terms of participation. (aut.ref.)

Background Public reports about health-care quality have not been effectively used by consumers thus far. A possible explanation is inadequate presentation of the information. Objective To assess which presentation features contribute to consumers’ correct interpretation and effective use of comparative health-care quality information and to examine the influence of consumer characteristics. Design Fictitious Consumer Quality Index (CQI) data on home care quality were used to construct experimental presentation formats of comparative information. These formats were selected using conjoint analysis methodology. We used multilevel regression analysis to investigate the effects of presenting bar charts and star ratings, ordering of the data, type of stars, number of stars and inclusion of a global rating. Setting and participants Data were collected during 2 weeks of online questioning of 438 members of an online access panel. Results Both presentation features and consumer characteristics (age and education) significantly affected consumers’ responses. Formats using combinations of bar charts and stars, three stars, an alphabetical ordering of providers and no inclusion of a global rating supported consumers. The effects of the presentation features differed across the outcome variables. Conclusions Comparative information on the quality of home care is complex for consumers. Although our findings derive from an experimental situation, they provide several suggestions for optimizing the information on the Internet. More research is needed to further unravel the effects of presentation formats on consumer decision making in health care.

In Islamic culture, there is an imperative demand that women should be virgins on their wedding night. Service providers in The Netherlands are increasingly confronted by Islamic young women who find themselves in serious difficulties because they are no longer virgins, and are about to enter a forced or arranged marriage. These young women report a diversity of problems such as loneliness, social isolation, depression, despair, suicidal feelings, identity problems and serious conflicts with parents. In this article we focus attention on the circumstances that can result in these types of difficulties, and also critically consider the kinds of help that young Islamic women are given. Attention is paid to the question of whether existing forms of service provision, especially surgical reconstruction of the hymen, take sexual and other inequalities into account.

Background Patient-given global ratings are frequently interpreted as summary measures of the patient perspective, with limited understanding of what these ratings summarize. Global ratings may be determined by patient experiences on priority aspects of care. Objectives (i) identify patient priorities regarding elements of care for breast cancer, hip- or knee surgery, cataract surgery, rheumatoid arthritis and diabetes, (ii) establish whether experiences regarding priorities are associated with patient-given global ratings, and (iii) determine whether patient experiences regarding priorities are better predictors of global ratings than experiences concerning less important aspects of care. Setting and participants Data collected for the development of five consumer quality index surveys – disease-specific questionnaires that capture patient experiences and priorities – were used. Results Priorities varied: breast cancer patients for example, prioritized rapid access to care and diagnostics, while diabetics favoured dignity and appropriate frequency of tests. Experiences regarding priorities were inconsistently related to global ratings of care. Regression analyses indicated that demographics explain 2.4–8.4% of the variance in global rating. Introducing patient experiences regarding priorities increased the variance explained to 21.1–35.1%; models with less important aspects of care explained 11.8–23.2%. Conclusions Some experiences regarding priorities are strongly related to the global rating while others are poorly related. Global ratings are marginally dependent on demographics, and experiences regarding priorities are somewhat better predictors of global rating than experiences regarding less important elements. As it remains to be fully determined what global ratings summarize, caution is warranted when using these ratings as summary measures.