Good health care for a good life?:The case of down syndrome

People with Down syndrome have complex health care needs which are not always fully met. Health care improvements are required to better meet these needs. Quality indicators are an important tool for improving health care. However, quality indicators for health care for people with Down syndrome are scarce. Existing quality indicators focus on medical (physical) needs or the clinical setting, even though it is acknowledged that quality measures should reflect the total of quality aspects relevant to the population at stake, which may encompass aspects beyond the medical domain. These aspects beyond the medical domain are the focus of the current paper, which aims to provide insight into the way people with Down syndrome live their lives, how health care may fit in, and how this may impact the development of quality indicators. The paper is based on data originating from interviews with people with Down syndrome and their parents as well as focus groups with support staff members working in assisted living facilities for people with intellectual disability. The data revealed a lot of variation in how people with Down syndrome live their lives. Nevertheless, we were able to identify 11 topics, which we grouped into three overarching themes: (1) Being different yet living a normal life; (2) Down syndrome-(un)friendly society and services; and (3) family perspective. The variation in our data stresses the importance of health care that takes a person's life into account beyond the medical domain, as exemplified by the identified topics. Our findings also show that a good life is not merely depending on good health care supported by well-defined quality indicators, but on (support in) all life domains

Potential Barriers of Patient Involvement in Health Technology Assessment in Central and Eastern European Countries

Patients' perspectives are important to identify preferences, estimate values and appreciate unmet medical needs in the process of research and development and subsequent assessment of new health technologies. Patient and public involvement in health technology assessment (HTA) is essential in understanding and assessing wider implications of coverage and reimbursement decisions for patients, their relatives, caregivers, and the general population. There are two approaches to incorporating the patients' voice in HTA, preferably used in a mix. In the first one, patients, caregivers and/or their representatives directly participate at discussions in different stages of the HTA process, often at the same table with other stakeholders. Secondly, patient involvement activities can be supported by evidence on patient value and experience collected directly from patients, caregivers and/or their representatives often by patient groups Patient involvement practices, however, are limited in Central and Eastern European (CEE) countries without clear methodology or regulatory mechanisms to guide patient involvement in the HTA process. This poses the question of transferability of practices used in other countries, and might call for the development of new CEE-specific guidelines and methods. In this study we aim to map potential barriers of patient involvement in HTA in countries of the CEE region

Dutch healthcare reform: did it result in performance improvement of health plans? A comparison of consumer experiences over time

<p>Abstract</p> <p>Background</p> <p>Many countries have introduced elements of managed competition in their healthcare system with the aim to accomplish more efficient and demand-driven health care. Simultaneously, generating and reporting of comparative healthcare information has become an important quality-improvement instrument. We examined whether the introduction of managed competition in the Dutch healthcare system along with public reporting of quality information was associated with performance improvement in health plans.</p> <p>Methods</p> <p>Experiences of consumers with their health plan were measured in four consecutive years (2005-2008) using the CQI^®health plan instrument 'Experiences with Healthcare and Health Insurer'. Data were available of 13,819 respondents (response = 45%) of 30 health plans in 2005, of 8,266 respondents (response = 39%) of 32 health plans in 2006, of 8,088 respondents (response = 34%) of 32 health plans in 2007, and of 7,183 respondents (response = 31%) of 32 health plans in 2008. We performed multilevel regression analyses with three levels: respondent, health plan and year of measurement. Per year and per quality aspect, we estimated health plan means while adjusting for consumers' age, education and self-reported health status. We tested for linear and quadratic time effects using chi-squares.</p> <p>Results</p> <p>The overall performance of health plans increased significantly from 2005 to 2008 on four quality aspects. For three other aspects, we found that the overall performance first declined and then increased from 2006 to 2008, but the performance in 2008 was not better than in 2005. The overall performance of health plans did not improve more often for quality aspects that were identified as important areas of improvement in the first year of measurement. On six out of seven aspects, the performance of health plans that scored below average in 2005 increased more than the performance of health plans that scored average and/or above average in that year.</p> <p>Conclusion</p> <p>We found mixed results concerning the effects of managed competition on the performance of health plans. To determine whether managed competition in the healthcare system leads to quality improvement in health plans, it is important to examine whether and for what reasons health plans initiate improvement efforts.</p

The Dutch Consumer Quality Index: an example of stakeholder involvement in indicator development

Background: Like in several other Western countries, in the Dutch health care system regulated competition has been introduced. In order to make this work, comparable information is required about the performance of health care providers in terms of effectiveness, safety and patient experiences. Without further coordination, external actors will all try to force health care providers to be transparent. For health care providers this might result in a situation in which they have to deliver data for several sets of indicators, defined by different actors. Therefore, in the Netherlands an effort is made to define national sets of performance indicators and related measuring instruments. In this article, the following questions are addressed, using patient experiences as an example: - When and how are stakeholders involved in the development of indicators and instruments that measure the patients' experiences with health care providers? - Does this involvement lead to indicators and instruments that match stakeholders' information needs? Discussion: The Dutch experiences show that it is possible to implement national indicator sets and to reach consensus about what needs to be measured. Preliminary evaluations show that for health care providers and health insurers the benefits of standardization outweigh the possible loss of tailor-made information. However, it has also become clear that particular attention should be given to the participation of patient/consumer organisations. Summary: Stakeholder involvement is complex and time-consuming. However, it is the only way to balance the information needs of all the parties that ask for and benefit from transparency, without frustrating the health care system.

The Consumer Quality Index Hip Knee Questionnaire measuring patients' experiences with quality of care after a total hip or knee arthroplasty

<p>Abstract</p> <p>Background</p> <p>The Dutch Consumer Quality Index Hip Knee Questionnaire (CQI Hip Knee) was used to assess patients' experiences with and evaluations of quality of care after a total hip (THA) or total knee arthroplasty (TKA). The aim of this study is to evaluate the construct validity and internal consistency reliability of this new instrument and to assess its ability to measure differences in quality of care between hospitals.</p> <p>Methods</p> <p>Survey data of 1,675 subjects who underwent a THA or TKA were used to evaluate the psychometric properties. Exploratory factor analyses were performed and item-total correlations and inter-factor correlations were calculated to assess the construct validity of the instrument. Reliability analyses included tests of internal consistency (Cronbach's alpha coefficients). Finally, multilevel analyses were performed to assess the ability of the instrument to discriminate between hospitals in quality of care.</p> <p>Results</p> <p>Exploratory factor analyses indicated that the survey consisted of 21 items measuring five aspects of care (i.e. communication with nurses, communication with doctors, communication with general practitioner, communication about new medication, and pain control). Cronbach's alpha coefficients ranged from 0.76 to 0.90 indicating good internal consistency. The survey's ability to discriminate between hospitals was partly supported by multilevel analysis. Two scales (i.e. communication with nurses and communication with doctors) were able to measure differences between hospitals with respect to patients' experiences with quality of care. Logistic multilevel analyses indicated that hospitals explained part of the variation between patients in receiving information.</p> <p>Conclusion</p> <p>These findings suggest that the CQI Hip Knee is reliable and valid for use in Dutch health care. Health care providers or health plans can use this survey to measure patients' experiences with hospital care and to identify variations in care between hospitals.</p

How do healthcare consumers process and evaluate comparative healthcare information? A qualitative study using cognitive interviews

Background: To date, online public healthcare reports have not been effectively used by consumers. Therefore, we qualitatively examined how healthcare consumers process and evaluate comparative healthcare information on the Internet. Methods: Using semi-structured cognitive interviews, interviewees (n = 20) were asked to think aloud and answer questions, as they were prompted with three Dutch web pages providing comparative healthcare information. Results: We identified twelve themes from consumers' thoughts and evaluations. These themes were categorized under four important areas of interest: (1) a response to the design; (2) a response to the information content; (3) the use of the information, and (4) the purpose of the information. Conclusion: Several barriers to an effective use of comparative healthcare information were identified, such as too much information and the ambiguity of terms presented on websites. Particularly important for future research is the question of how comparative healthcare information can be integrated with alternative information, such as patient reviews on the Internet. Furthermore, the readability of quality of care concepts is an issue that needs further attention, both from websites and communication experts.

Health system outcomes and determinants amenable to public health in industrialized countries: a pooled, cross-sectional time series analysis

BACKGROUND: Few studies have tried to assess the combined cross-sectional and temporal contributions of a more comprehensive set of amenable factors to population health outcomes for wealthy countries during the last 30 years of the 20(th )century. We assessed the overall ecological associations between mortality and factors amenable to public health. These amenable factors included addictive and nutritional lifestyle, air quality, public health spending, healthcare coverage, and immunizations. METHODS: We used a pooled cross-sectional, time series analysis with corrected fixed effects regression models in an ecological design involving eighteen member countries of the Organisation for Economic Cooperation and Development during the period 1970 to 1999. RESULTS: Alcohol, tobacco, and fat consumption, and sometimes, air pollution were significantly associated with higher all-cause mortality and premature death. Immunizations, health care coverage, fruit/vegetable and protein consumption, and collective health expenditure had negative effects on mortality and premature death, even after controlling for the elderly, density of practicing physicians, doctor visits and per capita GDP. However, tobacco, air pollution, and fruit/vegetable intake were sometimes sensitive to adjustments. CONCLUSION: Mortality and premature deaths could be improved by focusing on factors that are amenable to public health policies. Tackling these issues should be reflected in the ongoing assessments of health system performance