Capturing the complexity of healthcare for people with Down syndrome in quality indicators - a Delphi study involving healthcare professionals and patient organisations.

BACKGROUND: Insight into quality of healthcare for people with Down Syndrome (DS) is limited. Quality indicators (QIs) can provide this insight. This study aims to find consensus among participants regarding QIs for healthcare for people with DS. METHODS: We conducted a four-round Delphi study, in which 33 healthcare professionals involved in healthcare for people with DS and two patient organisations' representatives in the Netherlands participated. Median and 75-percentiles were used to determine consensus among the answers on 5-point Likert-scales. In each round, participants received an overview of participants' answers from the previous round. RESULTS: Participants agreed (consensus was achieved) that a QI-set should provide insight into available healthcare, enable healthcare improvements, and cover a large diversity of quality domains and healthcare disciplines. However, the number of QIs in the set should be limited in order to prevent registration burden. Participants were concerned that QIs would make quality information about individual healthcare professionals publicly available, which would induce judgement of healthcare professionals and harm quality, instead of improving it. CONCLUSIONS: We unravelled the complexity of capturing healthcare for people with DS in a QI-set. Patients' rights to relevant information have to be carefully balanced against providers' entitlement to a safe environment in which they can learn and improve. A QI-set should be tailored to different healthcare disciplines and information systems, and measurement instruments should be suitable for collecting information from people with DS. Results from this study and two preceding studies, will form the basis for the further development of a QI-set.

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.

In search of quality indicators for Down syndrome healthcare: a scoping review.

BACKGROUND: The medical care chain around Down syndrome (DS) is complex, with many multidisciplinary challenges. The current quality of care is unknown. Outcome-oriented quality indicators have the potential to improve medical practice and evaluate whether innovations are successful. This is particularly interesting for the evolving care for people with DS and intellectual disabilities (ID). The aim of this study was to identify existing indicators for medical DS care, by reviewing the literature. METHODS: We systematically searched six databases (PubMed, EMBASE, Web of Science, CINAHL, PsycINFO, Google Scholar) for studies concerning the development and implementation of quality indicators for DS and/or ID care, published until February 1st 2015. The scoping review method was used, including systematic data extraction and stakeholder consultation. RESULTS: We identified 13 studies concerning quality indicators for ID care that obtained data originating from questionnaires (patient/family/staff), medical files and/or national databases. We did not find any indicator sets specifically for DS care. Consulted stakeholders did not come up with additional indicator sets. Existing indicators for ID care predominantly focus on support services. Indicators in care for people with ID targeting medical care are scarce. Of the 70 indicators within the 13 indicator sets, 10% are structure indicators, 34% process, 32% outcome and 24% mixed. Ten of the 13 sets include indicators on the WHO quality dimensions 'patient-centeredness', 'effectiveness' and 'efficiency' of care. 'Accessibility' is covered by nine sets, 'equitability' by six, and 'safety' by four. Most studies developed indicators in a multidisciplinary manner in a joint effort with all relevant stakeholders; some used focus groups to include people with ID. CONCLUSION: To our knowledge, this is the first review that searched for studies on quality indicators in DS care. Hence, the study contributes to existing knowledge on DS care as well as on measuring quality of care. Future research should address the development of a compact set of quality indicators for the DS care chain as a whole. Indicators should preferably be patient-centred and outcome-oriented, including user perspectives, while developed in a multidisciplinary way to achieve successful implementation.

GPs' opinions of health assessment instruments for people with intellectual disabilities: a qualitative study.

BACKGROUND: GPs provide health care to people with intellectual disabilities (ID). People with ID find it difficult to express themselves concerning health-related matters. Applying health assessments is an effective method to reveal health needs, and can play a role in prevention and health promotion. AIM: The aim of this qualitative study was to explore GPs' considerations about applying a health assessment for people with ID. DESIGN AND SETTING: This focus group study was conducted among a selection of Dutch GPs. METHOD: An interview guide was developed. All discussions were audiorecorded and transcribed. Analysis was performed using the framework analysis approach. Two researchers independently applied open coding and identified a thematic framework. This framework and the summaries of views per theme were discussed in the research team. RESULTS: After four focus groups, with 23 GPs, saturation was reached. Three main themes evolved: health assessments in relation to GPs' responsibility; the usefulness and necessity of health assessments; and barriers to using health assessments on people with ID. A health assessment instrument for people with ID can help GPs to focus on certain issues that are not so common in the general population. GPs are motivated to use such a tool if it is scientifically tested, and results in significant health gains. However, GPs identify barriers at the level of GP, patient, and organisation. CONCLUSION: Most GPs in the focus groups consider providing medical care to people with ID their responsibility and indicate that a health assessment instrument could be a valuable tool. In order to deliver good care, they need education and support. Many barriers need to be overcome before a health assessment instrument can be implemented.

Health information exchange for patients with intellectual disabilities: a general practice perspective.

BACKGROUND: Inadequate health information exchange (HIE) between patients with intellectual disabilities (ID), their carers, and GPs may lead to ineffective treatment and poor treatment compliance. Factors influencing HIE are largely unexplored in previous research. AIM: To provide insight into the perceived HIE facilitators of GPs and general practice assistants, and the barriers in GP consultations for patients with ID. DESIGN AND SETTING: An interview-based study with GPs (n = 19) and general practice assistants (n = 11) in the Netherlands. METHOD: Semi-structured interviews were conducted on topics relating to stages during and around GP consultation. Transcripts were coded and analysed using framework analysis. RESULTS: The main themes were impaired medical history taking and clinical decision making, and fragile patient follow-up. Factors negatively influencing HIE related to patient communication skills and professional carers' actions in preparing the consultation and in collecting, recording, and sharing information. HIE barriers resulted in risk of delay in diagnosis and treatment, misdiagnosis, unnecessary tests, and ineffective treatment regimens. HIE facilitators were described in terms of GP adjustments in communication, planning of consultations, and efforts to compensate for fragile follow-up situations. CONCLUSION: Inadequate HIE should be seen as a chain of events leading to less effective consultations, substandard treatment, and insufficient patient follow-up. The results indicate a mismatch between GPs' expectations about professional carers' competencies, responsibilities, and roles in HIE and the setting in which professional carers operate. Further research should focus on how daily GP practice can be attuned to the practicalities of HIE with patients with ID and their professional carers.

Experiences of patients with intellectual disabilities and carers in GP health information exchanges: a qualitative study.

BACKGROUND: Accurate health information exchange (HIE) is pivotal for good quality of care. However, patients with intellectual disabilities (ID) face challenges in processing and exchanging health information around GP consultations. Knowledge of HIE barriers and facilitators, including the roles of carers, may help to improve GP care for people with ID. OBJECTIVE: To gain more insight into HIE barriers and facilitators for ID patients in GP care. METHODS: A qualitative study exploring GP consultation experiences of people with ID (n = 35), professional carers (n = 20) and relatives (n = 15). Transcripts from interviews and focus groups were analyzed using a framework analysis approach. RESULTS: Analyses resulted in four themes: (i) Recognizing patient health needs; (ii) Impaired doctor-patient communication; (iii) Carers' mediating roles during consultations; and (iv) Patients' autonomy and self-determination. Barriers related to communication skills, lack of time, continuity of carers and physicians, information alignment between relative or professional carer and the GP, and information transfer and recording within the patient network. Facilitating factors related mainly to carer interventions, personal connections with patients and GP communication with patients and carers outside the consultation. CONCLUSION: There is considerable HIE potential in patients themselves, as well as in their network, although many barriers have to be overcome to profit from this. GP practices are recommended to adjust consultations and communication practices and to facilitate deployment of the patient's network, while still considering patient autonomy.

Beyond bridging the know-do gap: a qualitative study of systemic interaction to foster knowledge exchange in the public health sector in The Netherlands.

BACKGROUND: Despite considerable attention currently being given to facilitating the use of research results in public health practice, several concerns remain, resulting in the so-called know-do gap. This article aims to identify the key tensions causing the know-do gap from a broad perspective by using a systemic approach and considering the public health sector as an innovation system. METHODS: An exploratory qualitative design including in-depth semi-structured interviews was used, with 33 interviewees from different actor categories in the Dutch public health innovation system. The analyses employed an innovation system matrix to highlight the principal tensions causing the know-do gap. RESULTS: Seven key tensions were identified, including: research priorities determined by powerful players; no consensus about criteria for knowledge quality; different perceptions about the knowledge broker role; competition engendering fragmentation; thematic funding engendering fragmentation; predominance of passive knowledge sharing; and lack of capacity among users to use and influence research. CONCLUSIONS: The identified tensions indicate that bridging the know-do gap requires much more than linking research to practice or translating knowledge. An innovation system perspective is crucial in providing information on the total picture of knowledge exchange within the Dutch public health sector. Such a system includes broader stakeholder involvement as well as the creation of social, economic, and contextual conditions (achieving shared visions, building networks, institutional change, removing financial and infrastructural barriers), as these create conducive factors at several system levels and induce knowledge co-creation and innovation.

Mental health problems of undocumented migrants in the Netherlands: A qualitative exploration of recognition, recording, and treatment by general practitioners.

OBJECTIVE: To explore the views and experiences of general practitioners (GPs) in relation to recognition, recording, and treatment of mental health problems of undocumented migrants (UMs), and to gain insight in the reasons for under-registration of mental health problems in the electronic medical records. DESIGN: Qualitative study design with semi-structured interviews using a topic guide. SUBJECTS AND SETTING: Sixteen GPs in the Netherlands with clinical expertise in the care of UMs. RESULTS: GPs recognized many mental health problems in UMs. Barriers that prevented them from recording these problems and from delivering appropriate care were their low consultation rates, physical presentation of mental health problems, high number of other problems, the UM's lack of trust towards health care professionals, and cultural differences in health beliefs and language barriers. Referrals to mental health care organizations were often seen as problematic by GPs. To overcome these barriers, GPs provided personalized care as far as possible, referred to other primary care professionals such as social workers or mental health care nurses in their practice, and were a little less restrictive in prescribing psychotropics than guidelines recommended. CONCLUSIONS: GPs experienced a variety of barriers in engaging with UMs when identifying or suspecting mental health problems. This explains why there is a gap between the high recognition of mental health problems and the low recording of these problems in general practice files. It is recommended that GPs address mental health problems more actively, strive for continuity of care in order to gain trust of the UMs, and look for opportunities to provide mental care that is accessible and acceptable for UMs.

Mental health problems in undocumented and documented migrants: a survey study.

BACKGROUND: Undocumented migrants (UM) frequently report mental health problems. It is unknown to what extent these migrants seek help for these problems in general practice and how these issues are explored, discussed, registered and treated by GPs. OBJECTIVE: To gain insight in the registration and treatment of mental health problems in general practice of UM compared to documented migrants (DM). METHODS: A survey study of general practice patient records of UM and DM in nine general practices in the Netherlands. Consultation rates, registration of mental health problems, prescription of psychotropic medication and referrals to mental health care institutions of UM and DM patients were compared. RESULTS: A total of 541 migrants were included (325 UM and 216 DM). UM consulted a GP significantly less than DM (3.1 versus 4.9 times per year). Only 20.6% of the UM had at least one mental health problem diagnosis registered compared to 44.0% of the DM. In both groups, ~10% mentioned at least one main mental health complaint during the consultation that was not coded in the record. No significant differences were found in the prescription of psychotropic medication between the two groups. UM were referred less to mental health care institutions but more often to psychiatrists than to psychologists. CONCLUSION: UM had less consultations with their GP, and in these consultations, less mental health problems were registered. UM were referred less to psychologists but more often to psychiatrists. GPs are advised to explore and register mental health problems more actively in UM.

REsearch into implementation STrategies to support patients of different ORigins and language background in a variety of European primary care settings (RESTORE): study protocol.

BACKGROUND: The implementation of guidelines and training initiatives to support communication in cross-cultural primary care consultations is ad hoc across a range of international settings with negative consequences particularly for migrants. This situation reflects a well-documented translational gap between evidence and practice and is part of the wider problem of implementing guidelines and the broader range of professional educational and quality interventions in routine practice. In this paper, we describe our use of a contemporary social theory, Normalization Process Theory and participatory research methodology--Participatory Learning and Action--to investigate and support implementation of such guidelines and training initiatives in routine practice. METHODS: This is a qualitative case study, using multiple primary care sites across Europe. Purposive and maximum variation sampling approaches will be used to identify and recruit stakeholders-migrant service users, general practitioners, primary care nurses, practice managers and administrative staff, interpreters, cultural mediators, service planners, and policy makers. We are conducting a mapping exercise to identify relevant guidelines and training initiatives. We will then initiate a PLA-brokered dialogue with stakeholders around Normalization Process Theory's four constructs--coherence, cognitive participation, collective action, and reflexive monitoring. Through this, we will enable stakeholders in each setting to select a single guideline or training initiative for implementation in their local setting. We will prospectively investigate and support the implementation journeys for the five selected interventions. Data will be generated using a Participatory Learning and Action approach to interviews and focus groups. Data analysis will follow the principles of thematic analysis, will occur in iterative cycles throughout the project and will involve participatory co-analysis with key stakeholders to enhance the authenticity and veracity of findings. DISCUSSION: This research employs a unique combination of Normalization Process Theory and Participatory Learning and Action, which will provide a novel approach to the analysis of implementation journeys. The findings will advance knowledge in the field of implementation science because we are using and testing theoretical and methodological approaches so that we can critically appraise their scope to mediate barriers and improve the implementation processes.