Uncertainty and Coverage With Evidence Development: Does Practice Meet Theory?

OBJECTIVES: In theory, a successful coverage with evidence development (CED) scheme is one that addresses the most important uncertainties in a given assessment. We investigated the following: (1) which uncertainties were present during the initial assessment of 3 Dutch CED cases, (2) how these uncertainties were integrated in the initial assessments, (3) whether CED research plans included the identified uncertainties, and (4) issues with managing uncertainty in CED research and ways forward from these issues. METHODS: Three CED initial assessment dossiers were analyzed and 16 stakeholders were interviewed. Uncertainties were identified in interviews and dossiers and were categorized in different causes: unavailability, indirectness, and imprecision of evidence. Identified uncertainties could be mentioned, described, and explored. Issues and ways forward to address uncertainty in CED schemes were discussed during the interviews. RESULTS: Forty-two uncertainties were identified. Thirteen (31%) were caused by unavailability, 17 (40%) by indirectness, and 12 (29%) by imprecision. Thirty-four uncertainties (81%) were only mentioned, 19 (45%) were described, and the impact of 3 (7%) uncertainties on the results was explored in the assessment dossiers. Seventeen uncertainties (40%) were included in the CED research plans. According to stakeholders, research did not address the identified uncertainty, but CED research should be designed to focus on these. CONCLUSIONS: In practice, uncertainties were neither systematically nor completely identified in the analyzed CED schemes. A framework would help to systematically identify uncertainty, and this process should involve all stakeholders. Value of information analysis, and the uncertainties that are not included in this analysis should inform CED research design.

An Online Health Prevention Intervention for Youth with Addicted or Mentally Ill Parents: Experiences and Perspectives of Participants and Providers from a Randomized Controlled Trial.

BACKGROUND: Mental illnesses affect many people around the world, either directly or indirectly. Families of persons suffering from mental illness or addiction suffer too, especially their children. In the Netherlands, 864,000 parents meet the diagnostic criteria for a mental illness or addiction. Evidence shows that offspring of mentally ill or addicted parents are at risk for developing mental disorders or illnesses themselves. The Kopstoring course is an online 8-week group course with supervision by 2 trained psychologists or social workers, aimed to prevent behavioral and psychological problems for children (aged 16 to 25 years) of parents with mental health problems or addictions. The course addresses themes such as roles in the family and mastery skills. An online randomized controlled trial (RCT) was conducted to assess the effectiveness of the Kopstoring course. OBJECTIVE: The aim was to gain knowledge about expectations, experiences, and perspectives of participants and providers of the online Kopstoring course. METHODS: A process evaluation was performed to evaluate the online delivery of Kopstoring and the experiences and perspectives of participants and providers of Kopstoring. Interviews were performed with members from both groups. Participants were drawn from a sample from the Kopstoring RCT. RESULTS: Thirteen participants and 4 providers were interviewed. Five main themes emerged from these interviews: background, the requirements for the intervention, experience with the intervention, technical aspects, and research aspects. Overall, participants and providers found the intervention to be valuable because it was online; therefore, protecting their anonymity was considered a key component. Most barriers existed in the technical sphere. Additional barriers existed with conducting the RCT, namely gathering informed consent and gathering parental consent in the case of minors. CONCLUSIONS: This study provides valuable insight into participants' and providers' experiences and expectations with the online preventive intervention Kopstoring. It also sheds light on the process of the online provision of Kopstoring and the accompanying RCT. The findings of this study may partly explain dropout rates when delivering online interventions. The change in the (financial) structure of the youth mental health care system in the Netherlands has financial implications for the delivery of prevention programs for youth. Lastly, there are few RCTs that assess the effectiveness and cost-effectiveness of online prevention programs in the field of (youth) mental health care and not many process evaluations of these programs exist. This hampers a good comparison between online interventions and the expectations and experiences of the participants and providers. TRIAL REGISTRATION: Nederlands Trial Register: NTR1982; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=1982 (Archived by WebCite® at http://www.webcitation.org/6d8xYDQbB).

Care for community-dwelling frail older people: a practice nurse perspective.

AIMS AND OBJECTIVES: To evaluate care programmes for community-dwelling frail older people from a practice nurse perspective and gain a deeper understanding of their role within the programmes. BACKGROUND: In response to the increasing frail population, three regions in the Netherlands implemented care programmes, in which a proactive approach is used to identify frail older people in the community and provide them with the appropriate care and support. DESIGN: A constructivist grounded theory approach. METHODS: A formative process evaluation was performed, in which study participants were practice nurses (n = 23) focusing on the identification of and care for frail older people in primary care settings. Based on the principles of grounded theory, data were collected via semi-structured interviews and focus groups and analysed. RESULTS: The practice nurses explain that 'building a trusting relationship' with the older person and 'making connections' between older people, family and other professionals are key elements of good care in the programmes. 'Targeting the wrong audience' and 'providing good care' reflect the doubts and feelings of insecurity the practice nurses have about the screening and selection procedures and their own role and expertise in the programme. CONCLUSION: According to the experiences of practice nurses, a trusting relationship with the older people is necessary to provide good care. Practice nurses feel they should receive more support and education to conquer issues concerning social problems in frail older people. Moreover, practice nurses considered the screening and selection procedures to be unsuccessful in identifying frail older people who do need care. RELEVANCE TO CLINICAL PRACTICE: A trusting relationship should be given high priority in the care for community-dwelling frail older people. To improve the care programmes, screening and selection procedures need adjustments. Practice nurses should receive more support in dealing with older people with psychosocial problems.

Use of Value of Information in Healthcare Decision Making: Exploring Multiple Perspectives.

BACKGROUND: Value of information (VOI) is a tool that can be used to inform decisions concerning additional research in healthcare. VOI estimates the value of obtaining additional information and indicates the optimal design for additional research. Although it is recognized as good practice in handling uncertainty, it is still hardly used in decision making in the Netherlands. OBJECTIVE: This paper aims to examine the potential value of VOI, barriers and facilitators and the way forward with the use of VOI in the decision-making process for reimbursement of pharmaceuticals in the Netherlands. METHODS: Three focus group interviews were conducted with researchers, policy makers, and representatives of pharmaceutical companies. RESULTS: The results revealed that although all stakeholders recognize the relevance of VOI, it is hardly used and many barriers to the performance and use of VOI were identified. One of these barriers is that not all uncertainties are easily incorporated in VOI, and the results may be biased if structural uncertainties are ignored. Furthermore, not all research designs indicated by VOI may be feasible in practice. CONCLUSIONS: To fully embed VOI into current decision-making processes, a threshold incremental cost-effectiveness ratio and guidelines that clarify when and how VOI should be performed are needed. In addition, it should be clear to all stakeholders how the results of VOI are used in decision making.

Implementing care programmes for frail older people: a project management perspective.

OBJECTIVE: To examine the issues that influenced the implementation of programmes designed to identify and support frail older people in the community in the Netherlands. METHODS: Qualitative research methods were used to investigate the perspectives of project leaders, project members and members of the steering committee responsible for the implementation of the programmes. Interviews were conducted in 2009 (n = 10) and in 2012 (n = 13) and a focus group was organised in 2012 (n = 5). MAIN FINDINGS: The interviews revealed that the implementation was influenced by the extent and quality of collaboration between organisations, adaptation to existing structures, future funding for the programmes and project leadership. A good relationship between participating organisations and professionals is required for successful implementation. A lack of clear project leadership and structural funding hampers the implementation of complex programmes in primary care settings. IMPLICATIONS FOR PRACTICE: The findings of this study are useful for organisations and professionals who are planning to implement complex programmes. Identifying barriers concerning institutional collaboration, adaptation to existing structures, leadership and continuation of financial support at an early stage of the implementation process can support practitioners in overcoming them.

Losing connections and receiving support to reconnect: experiences of frail older people within care programmes implemented in primary care settings.

AIMS AND OBJECTIVES: The objective of this study was to evaluate whether care provided in the care programmes matched the needs of older people. BACKGROUND: Care programmes were implemented in primary-care settings in the Netherlands to identify frail older people and to prevent further deterioration of health. DESIGN AND METHODS: In total, 23 older people participated in in-depth interviews. Within this study, three older people participated as co-researchers; they gathered and analysed the data together with the academic researchers. Content analysis was used to analyse the data. RESULTS: Two categories emerged from the data: 'Losing connections' and 'Receiving support to reconnect.' 'Losing connections' reflects the needs of older people and 'Receiving support to reconnect' reflects their experience and the appreciated aspects of the provided care. A relationship of trust with the practice nurse (PN) appeared to be an important aspect of care, as it fostered the sharing of feelings and issues other than physical or medical problems that could not be shared with the general practitioner. The PNs are experienced as connectors, who help to restore feelings of connectedness and older peoples' access to resources in the community. CONCLUSIONS: The relationship with the PN was experienced as valuable because of the feelings of 'connectedness' it created. Through this connectedness, older people could discuss feelings of loneliness, depression and frustration in receiving and acquiring the appropriate resources and services with the PNs. Furthermore, the relationship with the PN helped the older people to gain access to other health professionals and services. IMPLICATIONS FOR PRACTICE: The results imply that care for frail older people should include an awareness of the importance of the trusting relationship. Nurses can play a vital role in creating a trusting relationship and are able to bridge the gap between older people and other professionals and services.