Information Patients With Melanoma Spontaneously Report About Health-Related Quality of Life on Web-Based Forums: Case Study.

BACKGROUND: There is a general agreement on the importance of health-related quality of life (HRQoL). This type of information is becoming increasingly important for the value assessment of health technology assessment agencies in evaluating the benefits of new health technologies, including medicines. However, HRQoL data are often limited, and additional sources that provide this type of information may be helpful. OBJECTIVE: We aim to identify the HRQoL topics important to patients with melanoma based on web-based discussions on public social media forums. METHODS: We identified 3 public web-based forums from the United States and the United Kingdom, namely the Melanoma Patient Information Page, the Melanoma International Forum, and MacMillan. Their posts were randomly selected and coded using qualitative methods until saturation was reached. RESULTS: Of the posts assessed, 36.7% (150/409) of posts on Melanoma International Forum, 45.1% (198/439) on MacMillan, and 35.4% (128/362) on Melanoma Patient Information Page focused on HRQoL. The 2 themes most frequently mentioned were mental health and (un)certainty. The themes were constructed based on underlying and more detailed codes. Codes related to fear, worry and anxiety, uncertainty, and unfavorable effects were the most-often discussed ones. CONCLUSIONS: Web-based forums are a valuable source for identifying relevant HRQoL aspects in patients with a given disease. These aspects could be cross-referenced with existing tools and they might improve the content validity of patient-reported outcome measures, including HRQoL questionnaires. In addition, web-based forums may provide health technology assessment agencies with a more holistic understanding of the external aspects affecting patient HRQoL. These aspects might support the value assessment of new health technologies and could therefore help inform topic prioritization as well as the scoping phase before any value assessment.

Patient-reported quality of care in anthroposophic and integrative medicine: A scoping review.

OBJECTIVE: To investigate how, and to what extent, patient-reported quality of care is measured in Anthroposophic and Integrative Medicine (AM/IM). METHODS: Scoping review of evaluation studies of patient-reported quality of care and development studies of PREMs and/or PROMs in AM/IM, using five stages of Arksey's methodological framework. SEARCH STRATEGY: Literature search in twelve relevant databases. DATA EXTRACTION: Basic information, added categories: Focus; PREMs/PROMs; Evaluation measures; Patient involvement; Use of results. RESULTS: Sixty-four included studies: 30 quantitative, 20 qualitative and 14 mixed-methods studies. Quantitative studies showed a wide variety of instruments and qualitative studies showed a meaningful list of evaluation themes. Most prevalent themes: Agency & Empowerment; Patient-provider relationship; Perceived effectiveness; Coping & Psychological functioning; Inner awareness; Meaning; and General wellbeing. Seven studies report concrete, coherent, patient-derived evaluation measures with emphasis on PROMs and/or PREMs. CONCLUSION: Patient-reported quality of care was not measured in a standardised way. Knowledge gap: in general, quantitative studies lack patient-derived measures and qualitative studies lack development of concrete evaluation measures. Many AM/IM evaluation aspects connect with patient-centred care. PRACTICE IMPLICATION: The international field of AM/IM would benefit from the development of a core set of validated PROMs and PREMs to further enhance its scientific underpinning.

Quality of health care according to people with Down syndrome, their parents and support staff-A qualitative exploration.

BACKGROUND: People with Down syndrome (PDS) have complex healthcare needs. Little is known about the quality of health care for PDS, let alone how it is appraised by PDS and their caregivers. This study explores the perspectives of PDS, their parents and support staff regarding quality in health care for PDS. METHOD: The present authors conducted semi-structured interviews with 18 PDS and 15 parents, and focus groups with 35 support staff members (of PDS residing in assisted living facilities) in the Netherlands. RESULTS: According to the participants, healthcare quality entails well-coordinated health care aligned with other support and care systems, a person-centred and holistic approach, including respect, trust and provider-patient communication adapted to the abilities of PDS. CONCLUSIONS: Our findings may be used to improve health care for PDS, and provide insight into how health care could match the specific needs of PDS.

Patient-centered outcomes on quality of life and anthroposophic healthcare: a qualitative triangulation study.

PURPOSE: To provide a qualitative investigation of aspects that matter to patients regarding quality of life (QOL) and other perceived treatment effects of anthroposophic healthcare (AH). It is a first step in the development of patient reported outcome measures (PROMs) for AH. Hence, it will contribute to the evaluation of AH quality from patients' perspectives. METHOD: Within-method triangulation of four qualitative data sources is: (1) Survey of 2063 patients of AH general practitioners; single open item; (2) Survey of 34 patients of AH nurses; single open item; (3) and (4) Sixteen semi-structured interviews with patients. The data sources contained patients' qualitative reports on contribution of treatment to QOL, other perceived treatment effects and/or quality of care aspects. Content analysis Construction of items and domains by open, axial and selective coding. RESULTS: Twelve domains regarding quality of life are found: Recovery/Symptom reduction, Active contribution/Autonomy, General well-being, Meaning, Rest/Relaxation, Functioning, Energy/Strength, Care relationship, Natural healing, Mindful inner attitude, Being well informed and Social relations. The interviews demonstrate relations between domains. CONCLUSIONS: The findings give a comprehensive insight into aspects of care that are relevant to patients, providing a first step to develop PROMs for AH. Findings show a broadening of domains compared to existing measurement instruments and show close similarities with the recently developed concept of "positive health." Extending QOL instruments with a broader set of domains would give concrete tools to improve evaluation of quality of care and make this evaluation more in line with aspects that matter to AH patients.

The consumer quality index anthroposophic healthcare: a construction and validation study.

BACKGROUND: Accounting for the patients' perspective on quality of care has become increasingly important in the development of Evidence Based Medicine as well as in governmental policies. In the Netherlands the Consumer Quality (CQ) Index has been developed to measure the quality of care from the patients' perspective in different healthcare sectors in a standardized manner. Although the scientific accountability of anthroposophic healthcare as a form of integrative medicine is growing, patient experiences with anthroposophic healthcare have not been measured systematically. In addition, the specific anthroposophic aspects are not measured by means of existing CQ Indexes. To enable accountability of quality of the anthroposophic healthcare from the patients' perspective the aim of this study is the construction and validation of a CQ Index for anthroposophic healthcare. METHOD: Construction in three phases: Phase 1. Determining anthroposophic quality aspects: literature study and focus groups. Phase 2. Adding new questions and validating the new questionnaire. Research population: random sample from 7910 patients of 22 anthroposophic GPs. DATA COLLECTION: survey, mixed mode by means of the Dillman method. Measuring instrument: experience questionnaire: CQ Index General Practice (56 items), added with 27 new anthroposophic items added and an item-importance questionnaire (anthroposophic items only). STATISTICAL ANALYSES: Factor analysis, scale construction, internal consistency (Chronbach's Alpha), inter-item-correlation, discriminative ability (Intra Class Correlation) and inter-factor-correlations. Phase 3. Modulation and selection of new questions based on results. Criteria of retaining items: general: a limited amount of items, statistical: part of a reliable scale and inter-item-correlation <0,7, and theoretical. RESULTS: Phase 1. 27 anthroposophic items. Phase 2. Two new anthroposophic scales: Scale AntroposophicTreatmentGP: seven items, Alpha=0,832, ICC=4,2 Inter-factor-correlation with existing GP-scales range from r=0,24 (Accessibility) to r=0,56 (TailoredCare). Scale InteractionalStyleGP: five items, Alpha=0,810, ICC=5,8, Inter-factor-correlation with existing GP-scales range from r=0,32 (Accessibility) to r=0,76 (TailoredCare). Inter-factor-correlation between new scales: r=0,50. Phase 3: Adding both scales and four single items. Removing eleven items and reformulating two items. CONCLUSION: The CQ Index Anthroposophic Healthcare measures patient experiences with anthroposophic GP's validly and reliably. Regarding the inter-factor-correlations anthroposophic quality aspects from the patients' perspective are mostly associated with individually tailored care and patient centeredness.

Free choice of healthcare providers in the Netherlands is both a goal in itself and a precondition: modelling the policy assumptions underlying the promotion of patient choice through documentary analysis and interviews.

BACKGROUND: In the Netherlands in 2006, a health insurance system reform took place in which regulated competition between insurers and providers is key. In this context, the government placed greater emphasis on patients being able to choose health insurers and providers as a precondition for competition. Patient choice became an instrument instead of solely a goal in itself. In the current study, we investigated the concept of 'patient choice' of healthcare providers, as postulated in the supporting documentation for this reform, because we wanted to try to understand the assumptions policy makers had regarding patient choice of healthcare providers. METHODS: We searched policy documents for assumptions made by policy makers about patient choice of healthcare providers that underlie the health insurance system reform. Additionally, we held interviews with people who were involved in or closely followed the reform. RESULTS: Our study shows that the government paid much more attention to the instrumental goal of patient choice. Patients are assumed to be able to choose a provider rationally if a number of conditions are satisfied, e.g. the availability of enough comparative information. To help ensure those conditions were met, the Dutch government and other parties implemented a variety of supporting instruments. CONCLUSIONS: Various instruments have been put in place to ensure that patients can act as consumers on the healthcare market. Much less attention has been paid to the willingness and ability of patients to choose, i.e. choice as a value. There was also relatively little attention paid to the consequences on equity of outcomes if some patient groups are less inclined or able to choose actively.

Using multilevel modeling to assess case-mix adjusters in consumer experience surveys in health care.

BACKGROUND: Ratings on the quality of healthcare from the consumer's perspective need to be adjusted for consumer characteristics to ensure fair and accurate comparisons between healthcare providers or health plans. Although multilevel analysis is already considered an appropriate method for analyzing healthcare performance data, it has rarely been used to assess case-mix adjustment of such data. The purpose of this article is to investigate whether multilevel regression analysis is a useful tool to detect case-mix adjusters in consumer assessment of healthcare. METHODS: We used data on 11,539 consumers from 27 Dutch health plans, which were collected using the Dutch Consumer Quality Index health plan instrument. We conducted multilevel regression analyses of consumers' responses nested within health plans to assess the effects of consumer characteristics on consumer experience. We compared our findings to the results of another methodology: the impact factor approach, which combines the predictive effect of each case-mix variable with its heterogeneity across health plans. RESULTS: Both multilevel regression and impact factor analyses showed that age and education were the most important case-mix adjusters for consumer experience and ratings of health plans. With the exception of age, case-mix adjustment had little impact on the ranking of health plans. CONCLUSIONS: On both theoretical and practical grounds, multilevel modeling is useful for adequate case-mix adjustment and analysis of performance ratings.

The road to tuberculosis treatment in rural Nepal: A qualitative assessment of 26 journeys.

BACKGROUND: The fact that tuberculosis can be treated with the DOTS strategy (Directly Observed Treatment, Short-course) is not enough to control the disease. Patients have to find their way to tuberculosis treatment first. To better understand the route to tuberculosis treatment in rural Nepal we interviewed twenty-six patients under treatment. METHODS: In semi-structured interviews patients shared their disease history and health seeking behaviour. The analysis focused on the encounters with the health care system before enrolment in the tuberculosis treatment program. RESULTS: Patient routes often started in the medical shop and led via intricate routes with multiple providers to facilities with higher qualified and more competent staff where tuberculosis was diagnosed. Several factors influenced the route to tuberculosis treatment. Besides known patients factors (such as severity of complaints, the ability to pay for services, availability of services and peer support for choosing a provider) specific health services factors were also identified. These included the perceived quality, costs and service level of a provider, and lack of provider initiated referral. Self referral because of waned trust in the provider was very common. In contrast, once tuberculosis was considered a possible diagnosis, referral to diagnostic testing and tuberculosis treatment was prompt. CONCLUSION: Patient routes towards tuberculosis treatment are characterised by self referral and include both private and public health care providers. Once tuberculosis is suspected referral for diagnosis and treatment is prompt. Given the importance of the private practitioners in the patient routes, quality improvement initiatives need to address not only the public sector but the private health care sector as well.

Collaborating while competing? The sustainability of community-based integrated care initiatives through a health partnership.

BACKGROUND: To improve health-care delivery, care providers must base their services on community health needs and create a seamless continuum of care in which these needs can be met. Though, it is not obvious that providers apply this vision. Experiments with regulated competition in the health systems of many industrialized countries trigger providers to optimize individual organizational goals rather than improve population health from a community perspective. Thus, a tension exists between the need to collaborate and the need to compete. Despite or because of this tension, community health partnerships are being promoted, and this should enforce a needs-based and integrated care delivery. METHODS: In this single case study, we retrospectively explored how local health-care providers in Amsterdam collaborated for more than 30 years, interacting with the changes to the national health-care system. In-depth analysis of interviews, documents and literature focused on the complex relationship between the activities of this health partnership, its nature and its changing context. RESULTS: The findings revealed that the partnership itself was successful and sustainable over time, although the partnership lost its initial broad explorative nature and narrowed its strategic focus towards care of the elderly. Furthermore, the realized projects--although they enforced integrated care--lost their community-based character. This declining scope of community-based integrated care seems to have been influenced by the incremental introduction of regulated competition in Dutch health care. This casts doubts on the ability of health partnerships to apply a vision of community-based integrated care within the context of competition. CONCLUSION: Collaborating health-care providers can build seamless continuums of care in a competitive environment, although these will not automatically maximize community health with limited resources. Active policies with regard to health system design, incentive structures and population-based performance measures are warranted in order to insure that community-based integrated care through health partnerships will be more than just policy rhetoric.

Made in the USA: the import of American Consumer Assessment of Health Plan Surveys (CAHPS) into the Dutch social insurance system.

BACKGROUND: In the Netherlands, managed competition between health plans has been introduced. For Dutch health plans this implies that they need to collect data about their own performance and that of the care providers they contract. To that end, Consumer Assessment of Health Plan Surveys (CAHPS) instruments have recently been adopted by a large Dutch health plan. OBJECTIVES: This paper presents the results of a validation study of the Dutch version of the CAHPS Adult Commercial questionnaire. The questions addressed are as follows: Can this questionnaire be adapted for use in the context of the Dutch insurance system? and Can it generate valid information about the quality of health care and the performance of Dutch health plans? METHODS: The translated questionnaire has been mailed to a sample of 977 enrollees. The psychometric properties of the translated instrument have been studied, and the results have been compared with those of other Dutch and American studies. RESULTS: The net response rate was 51% (n = 500). In general, the questionnaires were filled out completely and consistently. Principal component analyses revealed a factor that can be labelled as patient-centredness in the primary process. It contains the domains that in the CAHPS literature are described as 'courteous/helpful staff' and 'doctors communicating well'. CONCLUSIONS: The translated version of the CAHPS Adult Commercial questionnaire is a promising tool for Dutch health plans. More research is needed on the external and the content validity of these questionnaires in the Dutch context.

Building integrated health systems in central and eastern Europe: an analysis of WHO and World Bank views and their relevance to health systems in transition.

BACKGROUND: Two questions are addressed. i) What are the views on health and health systems as expressed in the World Development Report 2000/2001 of the WB and the World Health Report 2000 and Health 21 of the World Health Organization, and how compatible are those views? ii) To what extent will compliance of CEEC and NIS with the WHO and WB recommendations result in health systems that produce maximum health for all by adequately addressing the needs of their populations? METHOD: The reports prepared by the World Bank and the World Health Organization were assessed against the theoretical framework of a needs-based public health approach. RESULTS: It is observed that the WHO and WB approaches are currently converging, although there remain differences in their respective focuses. The main merit of the WHO approach is its focus on performance and the systems approach towards health (care). The merit of the WB view is the integrated approach to health, education and poverty. It is argued that CEEC and NIS need to anticipate an ageing population and growing numbers of chronically ill. This calls for integrated health care systems and more integrated funding and payment systems. CONCLUSION: The recommendations provided in the WHR and the WDR with regard to integrated care and integrated financing remain rather abstract. Advisors of CEEC and NIS on health care reform and Western assistance projects should focus more on future needs, in order to avoid building health systems that consistently lag behind the needs of their populations.