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Eliciting preferences of persons with dementia and informal caregivers to support ageing in place in the Netherlands: a protocol for a discrete choice experiment

Eliciting preferences of persons with dementia and informal caregivers to support ageing in place... Open access Protocol Eliciting preferences of persons with dementia and informal caregivers to support ageing in place in the Netherlands: a protocol for a discrete choice experiment 1,2 1,2 3 4 Isabelle Vullings , Joost Wammes, Özgül Uysal- Bozkir, Carolien Smits, 5 6,7 6,7 Nanon H M Labrie, J D Swait, Esther de Bekker- Grob, 1,2 Janet L Macneil-V roomen To cite: Vullings I, Wammes J, ABSTRACT STRENGTHS AND LIMITATIONS OF THIS STUDY Uysal- Bozkir Ö, et al. Eliciting Introduction Ageing in place (AIP) for persons with preferences of persons ⇒ This will be the first study to include informal care- dementia is encouraged by European governments and with dementia and informal givers and persons with dementia to identify ageing societies. Healthcare packages may need reassessment caregivers to support ageing in place (AIP) preferences that has been codesigned to account for the preferences of care funders, patients in place in the Netherlands: with health insurers, policy- makers, patient advo- and informal caregivers. By providing insight into people’s a protocol for a discrete cacy groups, healthcare professionals, researchers, preferences, discrete choice experiments (DCEs) can help choice experiment. BMJ Open informal caregivers and persons with dementia. develop consensus between stakeholders. This protocol 2023;13:e075671. doi:10.1136/ ⇒ Innovative and rigorous economic methods will be bmjopen-2023-075671 paper outlines the development of a Dutch national study employed to evaluate AIP preferences. to cocreate a healthcare package design methodology ► Prepublication history and ⇒ Pooling of persons with dementia with different built on DCEs that is person- centred and helps support additional supplemental material migration background may lead to better under- informal caregivers and persons with dementia to AIP. A for this paper are available standing of their needs as they are typically under- subpopulation analysis of persons with dementia with a online. To view these files, represented in research. migration background is planned due to their high risk for please visit the journal online ⇒ A limitation of this study is the generalisability (http://dx.doi.org/10.1136/ dementia and under- representation in research and care. of results as not all migrant groups living in the bmjopen-2023-075671). Methods and analysis The DCE is designed to Netherlands may be included. understand how persons with dementia and informal Received 16 May 2023 ⇒ This study is conducted in the Netherlands; findings caregivers choose between different healthcare packages. Accepted 29 November 2023 might be specific to the Dutch Healthcare setting. Qualitative methods are used to identify and prioritise important care components for persons with dementia to AIP. This will provide a list of care components that will be included in the DCE, to quantify the care needs emphasise ageing in place (AIP) as a way and preferences of persons with dementia and informal to control costs associated with population caregivers. The DCE will identify individual and joint ageing. The Netherlands is the highest preferences to AIP. The relative importance of each spender of long- term care per gross domestic attribute will be calculated. The DCE data will be analysed 2 product in the world. Most Dutch long- term with the use of a random parameters logit model. care services are paid by the national health Ethics and dissemination Ethics approval was waived insurance, with a low percentage of copay- by the Amsterdam University Medical Center (W23_112 ments. To cope with the rising long-term care #23.137). A study summary will be available on the costs, the Netherlands reformed its long- term websites of Alzheimer Nederland, Pharos and Amsterdam care policy in 2015. The reform increased Public Health institute. Results are expected to be informal care duties and encouraged older presented at (inter)national conferences, peer- reviewed 4 5 papers will be submitted, and a dissemination meeting adults to AIP. A substantial component of © Author(s) (or their will be held to bring stakeholders together. The study the Dutch long- term care costs is attributed to employer(s)) 2023. Re- use results will help improve healthcare package design for all dementia care, as it is the most costly disease permitted under CC BY. stakeholders. Published by BMJ. encompassing 10.6% of the total Dutch For numbered affiliations see healthcare budget. The dementia population end of article. is known for its requirement of complex and INTRODUCTION costly care. However, it remains unknown Correspondence to Nearly every country across Europe has how AIP has affected this population. In the Isabelle Vullings; i. vullings@ amsterdamumc. nl reformed its long- term care policy to years after the reform, preliminary results Vullings I, et al. BMJ Open 2023;13:e075671. doi:10.1136/bmjopen-2023-075671 1 Open access indicate an increased need for support with crisis situa- utility maximising manner, choosing their most preferred tions such as unplanned hospitalisations, acute nursing option based on the relative overall attractiveness of the 8 9 16 18 home admissions and hospital deaths. These crises included attributes and attribute levels. This protocol situations are not only costly, but can also compromise paper will outline the development of a Dutch national the safety and well- being of persons with dementia AIP, study to create a healthcare package design methodology, in addition to the informal caregivers expected to carry built on DCEs, that is person centred and helps support the load. both informal caregivers and persons with dementia Despite the need for evidenced-based policy to ensure to successfully AIP. Qualitative methods will be used to proper healthcare services, people with dementia and identify the care needs and preferences of persons with informal caregivers are frequently excluded from policy dementia and their informal caregivers. The results of the creation; therefore, services often do not fit with their qualitative studies will provide insights into the attributes 10 11 needs or are not provided at the right time. To support (ie, care components) that will be included in the DCE. successful AIP, identifying the care preferences of persons For the DCE, a subpopulation analysis of persons with with dementia and informal caregivers is crucial. While dementia with a migration background is planned. identifying these preferences, special attention should Aim be given to persons with dementia and informal care- The aim of this study is to identify individual and joint givers with a migration background, who are known to 12 13 preferences of persons with dementia and informal care- have a higher risk of developing dementia. Despite givers for in-home support that enables AIP . We also their high risk, persons with a migration background are aim to create optimal healthcare packages for persons under- represented in research and care. It is crucial with dementia and informal caregivers to AIP. For this that persons with a migration background be included in second aim, choice model inferences will be the basis for research so healthcare package evidence is representative creating the most preferred care packages and testing the of the dementia population. To provide recommenda- uptake in a subsample of participants. This will validate tions for healthcare packages, it is subsequently needed the national model inferences and provide policy- makers to quantify the identified care preferences, which can be with high quality, understandable and implementable realised with a discrete choice experiment (DCE). evidence. DCEs are a popular stated preference method used to elicit patients’ preferences in healthcare on a large 15–17 scale. In a DCE, participants are presented with a series of alternative hypothetical scenarios. Participants METHODS are repetitively asked to select in each alternative hypo- Overview of the DCE thetical scenario their preferred option from among a In this protocol paper, the different phases of designing an presented set of options, for example, care packages. inclusive DCE study in which persons with dementia and These choice options are characterised by their attributes their informal caregivers can participate will be outlined. 15 16 and corresponding attribute levels. An example of an The study will be conducted between April 2022 and May attribute could be emotional support, described as the 2025. Figure 1 illustrates that the first phase is focused possibility to talk to someone about personal feelings or on attribute development, in which semistructured inter- concerns. The corresponding attribute levels could be views are used to identify important components of care (1) peer support group, (2) psychologist or (3) telephone for persons with dementia and informal caregivers AIP. helpline. The outcomes (choices) from DCEs are anal- In the second phase, persons with dementia and informal ysed based on the assumption that participants act in a caregivers are asked which of the care components are Figure 1 Flow chart study design to create healthcare packages based on discrete choice experiments. 2 Vullings I, et al. BMJ Open 2023;13:e075671. doi:10.1136/bmjopen-2023-075671 Open access most important to them, leading to a prioritisation of the informal caregivers. Finally, a policy brief will be written to attributes and the development of attribute levels. For ensure that the study results are known to policy creators phases 1 and 2, the Consolidated criteria for Reporting and can help to improve healthcare package design for Qualitative research guidelines for reporting qualitative older adults and informal caregivers. research will be followed to ensure important aspects of the research team, reflexivity, study design, findings Expert panel and analysis are reported. The third phase consists of Throughout the entire study, an expert panel will be a pilot which is used to test if the content of the DCE is consulted on the design and content of the DCE, and on understandable for persons with dementia and informal the inferences made from its execution. The expert panel caregivers, and if the list of included attributes and corre- will include researchers who have experience with doing sponding attribute levels is complete. Finally, in phase 4, DCEs, policy- makers, health insurers, patient advocacy the researchers conduct the DCE study. An expert panel groups, persons with dementia and informal caregivers. will be consulted during all the different phases of the The experienced researchers will be asked to provide study to reflect on the research design and findings. guidance and feedback on the methodological choices Phases 3 and 4 will be reported according to the Strength- made in the DCE design. Subsequently, the envisioned ening the Reporting of Observational Studies in Epide- outcome of the DCE study will be discussed with policy- miology guidelines, developed as a tool for authors to makers and health insurers to gain insights concerning ensure high- quality reporting of observational studies. the comprehension and appropriateness of this envi- For constructing the DCE design, the International sioned outcome. The inclusion of policy-makers and Society for Pharmacoeconomics and Outcomes Research health insurers in this phase will allow for the opportunity (ISPOR) good research practices reports will also be to make changes to the study design that help to realise 21 22 followed. implementation. Patient and public involvement Participants The DCE, including the framing of the questions, will This study aims to identify preferences of persons with be developed after focus group discussion and multiple dementia and informal caregivers AIP; therefore, persons individual interviews with persons with dementia and with dementia who live in a long-term care facility will not informal caregivers. Persons with dementia, informal be included in this study. Additional exclusion criteria caregivers and policy- makers are involved from the start will consist of (1) persons who are cognitively impaired of the study to ensure the appropriateness of the meth- to the extent that no conversation can be held with them; odology and to help come to meaningful and imple- (2) people who are unable to provide informed consent. mentable results. Study materials, such as interview It is know that dementia diagnoses are often delayed, guides, will be discussed with persons with dementia especially in migration populations ; therefore, people and informal caregivers before the start of the study to without a formal diagnosis will not be excluded a priori. ensure appropriateness and make necessary changes. However, recruiting participants through healthcare Prior to the DCE, person with dementia, informal care- professionals, day- care centres and social organisations givers and patient advocacy groups will be asked to voice that serve persons with dementia and informal care- their opinion about the final list of attributes and corre- givers will ensure that all persons have a dementia indi- sponding levels included in the DCE. Patient advocacy cation. For the final DCE, the telephone-based interview groups, persons with dementia and informal caregivers, for cognitive screening (TICS) will be administered to are to be included to make sure that the study properly describe the study participants. represents these groups, and the study results reflect their Prior to the interviews, focus groups, or DCE choice needs and preferences. The patient advocacy groups and tasks, the researchers will go through the information policy- makers are consulted through an expert panel, letter and informed consent form together with the partic- details of which can be found in the next section. The ipants to ensure proper understanding and provide the Guidance for Reporting Involvement of Patients and the opportunity to ask for clarifications. Subsequently, partic- Public 2 (GRIPP2) checklist will be followed to report the ipants will be asked to provide written informed consent. patient and public involvement. If participants are unable to write, verbal continued The DCE study will identify individual and joint prefer- informed consent will be used. Throughout the study, ences to AIP, allowing for this concept to be implemented participants will be continuously reminded that they elsewhere. The findings of this study will be published are participating in research to ensure that they remain in peer- reviewed journals and an easy-to- understand informed and are comfortable to continue. It will be summary of the results will be available through patient stressed that participation can be stopped at any moment. organisations such as Alzheimer Nederland and Pharos. Furthermore, the researchers will organise informative Attribute and level development for Dutch persons with events to communicate the study results to persons with dementia and informal caregivers dementia and informal caregivers. These events will be Study phases 1 and 2 are already partly completed, as organised together with the patient advocacy groups and interviews and focus groups were held with persons with Vullings I, et al. BMJ Open 2023;13:e075671. doi:10.1136/bmjopen-2023-075671 3 Open access Table 1 Attribute description and corresponding levels Attribute Description Possible levels In- home care I can get assistance at home with personal care such as ► Daily on a fixed time showering, dressing, or medication ► 24/7 on demand Help with daily activities I can get assistance at home with household tasks such as ► Once per week groceries, laundry, cooking, cleaning, or help with doing my ► Multiple times per week finances Social activities I can participate in social activities that I like to do ► At a day- care facility ► At home Emotional support I can talk to someone when I feel down or want to share my ► Peer support group worries ► Psychologist ► Telephone helpline ► Case manager Information about dementia I can get information about having dementia ► Telephone helpline ► Case manager Navigating the healthcare I can get assistance with organising care, and help with ► Telephone helpline system insurances ► Case manager Home adaptations and tools I can get home adaptations and tools such as a stair lift, grips in ► No reimbursements shower and toilet, or a personal alarm ► Fully reimbursed Current list of attributes may need to be updated after expert panel review and interviews with persons with dementia and informal caregivers with a migration background. dementia and informal caregivers across the Netherlands (NOOM)). The organisations will inform potential partic- 28 29 to identify attributes and levels (table 1). The iden- ipants about the study, and interested participants will be tified attributes and levels were similar for persons with provided with a bilingual invitation letter. The interviews dementia and informal caregivers; however, they prior- will be conducted in the preferred language of the partici- itised the care components differently. People with pants: Turkish, Moroccan- Arabic, Tarifit or Dutch. Inter- dementia prioritised day-to- day help and social care, while views will be conducted by trained bilingual interviewers. for informal caregivers, priorities were information about Persons with dementia and informal caregivers will be dementia, organisation of care and emotional support. interviewed separately. However, since it is important that Unfortunately, no persons with a migration background participants feel comfortable, if they strongly wish to be were included in these qualitative studies. Therefore, the interviewed together this will be permitted. interviews and focus groups will be repeated with persons The interviews will be semistructured, which means with dementia and informal caregivers with a migration that an interview guide (online supplemental file 1) will background to ensure the attributes and levels are appli- be used to provide some structure, while leaving room cable to this part of society as they have a higher risk for for new topics to be brought up by the participants. The dementia compared with people with non-migration interview guide will generally be based on the guide background. (online supplemental file 2) of the interview study for persons with non- migration backgrounds, with addi- Attribute identification for persons with dementia and tions based on findings of previous studies that focused informal caregivers with a migration background on persons with dementia and informal caregivers with To identify care preferences and needs of persons with 30 31 a migration background. The cultural sensitivity and dementia and informal caregivers with a migration back- understandability of the interview guide will be assessed ground, semistructured interviews will be performed by Pharos, centre of expertise in health disparities and across the Netherlands. Participants will primarily include experienced researchers (CS and ÖUB). The inter- persons with dementia and informal caregivers with a views will be transcribed and translated by the bilingual Turkish, Moroccan or Surinamese background as these interviewer who conducted the interviews. Respondents are the largest groups of non-western immigrants in the will have the opportunity to review the translated tran- Netherlands and they are known to have a high risk for scripts, which will help to ensure proper interpretation developing dementia. People living with dementia who and provide opportunities to give clarifications. It will do not speak Dutch as their first language will be welcome be stressed that this is voluntary; participants are free to participate. to choose if they wish to read the translated transcripts. Participants will be recruited with the help of day- Interviews will be held until data saturation is reached, care centres, general practitioners and organisations which is expected after approximately 10 interviews for that serve persons with a migration background (Pharos and Netwerk van Organisaties van Ouderen Migranten each group. Reflexive thematic analysis will be used to 4 Vullings I, et al. BMJ Open 2023;13:e075671. doi:10.1136/bmjopen-2023-075671 Open access 33 34 analyse and identify relevant patterns within the data. of choice tasks and the appropriateness of the included Coding of the data will be done with both a deductive attributes and attribute levels. Furthermore, the pilot and inductive approach, starting with certain theoret- will help to illustrate if the length of the DCE survey is ical or empirical assumptions, with an open approach. acceptable. Based on the pilot, changes might need to be The results will provide a list of attributes (care compo- made to the DCE survey to increase appropriateness and nents) that are important for persons with dementia and understandability, as well as manage survey complexity informal caregivers with a migration background. for persons with dementia. The final DCE Attribute prioritisation and the development of attribute levels The final DCE will include three rounds: (1) persons with To understand the relative importance of the care compo- dementia, (2) informal caregivers and (3) dyadic rounds nents that are identified, mixed focus group sessions will with both the persons with dementia and informal care- be held with a new sample of persons with dementia and givers. The first two rounds will help to elucidate indi- informal caregivers with a Turkish, Moroccan or Suri- vidual preferences, while the dyadic round will help to namese background. Focus groups create an environ- elucidate joint preferences. Identifying joint preferences ment in which participants can share their experiences is important since decisions about care are often made and build on each other’s knowledge. To ensure a free 35–37 by multiple individuals. Furthermore, the dyadic discussion, informal caregivers will not be participating DCE round can pose as an opportunity for the person in the same focus group as their person with dementia. with dementia and their informal caregiver to have an Participants will be recruited with the help of previously in- depth conversation about their preferences and needs, mentioned organisations. To facilitate dialogue between which could lead to better mutual understanding. It is the participants, focus groups will include participants likely that preference adaptation will occur; however, as with similar migration backgrounds and linguistic pref- shown in previous research, this adaptation can be from erences. The focus groups will be conducted by trained both the person with dementia and the informal care- bicultural interviewers. The focus group session will giver. Informal caregivers were not primarily dominant include a quantitative ranking exercise in which persons in dyadic DCE rounds, in fact the informal caregivers with dementia and informal caregivers will be asked to were found to be helpful in assisting the person with list the care components from most important to least dementia to complete more choice tasks. An active role important. For this ranking exercise, cards with the of the researcher administering the DCE choice tasks previously identified care characteristics, containing is needed to help guide the dialogue in the joint DCE visual and written information will be used. During the rounds. People with dementia will be encouraged to state focus group, the reasoning behind the choices made in their preference and motivation first to minimise agency the ranking exercise will be discussed. of informal caregivers. Focus groups will be held until saturation is reached, The complexity of a DCE can be challenging for which is expected after approximately six sessions, each 39–41 persons with dementia. However, a recent study including persons with dementia (n=4) and informal found that persons with moderate cognitive impairment caregivers (n=4). Focus groups will be transcribed and can complete DCE choice tasks. Therefore, persons will translated by the trained bilingual interviewers. Partici- not be excluded a priori based on their level of cognitive pants will be provided with the opportunity to read the impairment. The following options in the DCE design translated transcripts and, if necessary, provide clarifica- will help to lower the cognitive burden for persons with tions. Reflexive thematic analysis will be used to analyse 33 34 dementia. First, illustrations will be used to visualise the and identify relevant patterns within the data. Coding choice sets and included attributes. Figure 2 provides an of the data will be done with both a deductive and induc- example of such an illustration. The illustrations are tive approach, starting with certain theoretical or empir- made by a graphic designer who has experience illus- ical assumptions, with an open approach. The results trating pictures for persons with cognitive impairments. will consist of a ranking of the attributes (care compo- Second, the DCE will have binary choice tasks, asking nents) and a description of the attribute levels (character- participants to choose between packages A and B, instead istics of care components). of including multiple alternatives (eg, additional pack- DCE pilot ages C or D). Participant will complete a maximum of six For the DCE pilot, the list of attributes that has previously choice tasks, consisting of three attributes and two corre- 38 42 been identified (table 1) will be updated with the find- sponding levels. Blocked fractional factorial designs ings of the qualitative studies with persons with dementia will be created with the use of Ngene. Finally, the DCE will and informal caregivers with a migration background. start with a practice round to test decision making skills. The pilot will include both individual DCE rounds with Persons with dementia will be asked to think aloud while the persons with dementia (n=4) and informal caregivers completing the choice tasks. The think-aloud technique (n=4), and dyadic rounds with both the person with is commonly used in research to make thought processes dementia and their informal caregiver. The in- person pilot of participants observable for researchers. It has been will include the testing of respondents’ understanding found useful in supporting persons with dementia to Vullings I, et al. BMJ Open 2023;13:e075671. doi:10.1136/bmjopen-2023-075671 5 Open access and joint DCE round will be analysed with summary statis- tics and bivariate comparisons. A contingent valuation approach will be used to identify the participants’ willingness to pay (WTP) for the most 47 48 preferred programmes outside of the DCE. While out- of- pockets costs for social care does not currently occur in the Netherlands yet, this may soon change. Therefore, an indication of the WTP is helpful for policy-makers and health insurers. At the end of the DCE, participants indicate their preferred envisioned package over their current service provision, they will be asked if they are willing to pay an additional monthly out-of- pocket fee of €50 for this package. If participants answer this question with yes, additional questions with out- of- pocket fees of €100 and €200 will be asked. If participants answered no to the initial question of €50, similar questions with an Figure 2 Illustrated discrete choice experiment choice amount of €25 and €12,50 will be asked. Finally, partic- tasks. ipants will be asked to indicate their maximum WTP in an open-ended question. For the analysis, the maximum price expressed in the open-ended question will be used complete DCE choice tasks, as it enables researchers to and summarised through the median and IQR. observe difficulties and, if needed, provide guidance or remind persons with dementia about the rules of the choice tasks. Statistical analysis The DCE data will be analysed with a random parameters Power calculation logit (RPL) model. For each attribute level, coefficient Envisioning a two- alternative choice task and four repli- estimates will be estimated from the RPL model, which cates per dyad, a minimum sample size n≥576 is recom- can be interpreted as the relative preference weight. mended for a DCE to reliably achieve 95% CIs on true Individual and joint models will be created to evaluate uptake probabilities of 0.4. Therefore, the goal will preferences of persons with dementia and informal care- be to achieve a sample size of 600 dyads of persons with givers at the individual and joint DCE rounds. dementia and informal caregivers, covering all targeted To analyse if persons with dementia and informal care- groups. Purposive sampling of minority groups, people givers with a migration background have different pref- living in urban and rural areas, and people with different erences, post hoc subgroup analysis will be conducted. educational levels will be used. In addition, sampling Dummy coded variables will be added to the RPL model across the country will help to make the healthcare to identify participants that are part of given subgroups. package as nationally representative as possible. The attribute levels in the RPL model will be interacted Participants will be recruited through general prac- with the dummy variable, and all interaction terms will be titioners, geriatricians, day-care facilities and organi - added to the original RPL model. The estimated param- sations that serve persons with dementia and informal eters of the interaction terms will illustrate the difference caregivers (Alzheimer Nederland, Pharos, NOOM). The in preferences between the subgroup (persons with a professionals will inform potential participants about the migration background) and the reference group (persons study, and provide them with the (bilingual) information without a migration background). This method can also letter. With the participants’ consent, the researchers will be used to analyse if there are different preferences based obtain their contact information form the professionals. on other subgroups, such as socioeconomic status. The researchers will contact the potential participant Finally, the attributes with the highest relative impor- by telephone to answer any remaining questions and to 26 tance can be used to build most preferred programmes administer the TICS. The researchers will schedule an (healthcare packages). To ensure validity of these results appointment at the participants home to complete the for health insurers and government, the uptake of the DCE choice tasks in person. most preferred programmes will be tested on a subsa- mple of the target population. Model predictions will Outcomes be verified by creating the most preferred programmes The main outcome of the DCE study will be the relative according to the preferences of persons with dementia importance of the attributes (care components). The rela- and informal caregivers that were found in the DCE. A tive importance of each attribute will be calculated as the new sample will be collected of 50–60 participants to test difference between the preference weights of the most the uptake of the most preferred programmes by asking and least preferred level of that attribute. The relative importance will be scaled so that 10 indicates the most participants which one they would rather have over their preferred attribute. The difference between individual current service provision. 6 Vullings I, et al. BMJ Open 2023;13:e075671. doi:10.1136/bmjopen-2023-075671 Open access DISCUSSION Consent This is a prospective study and pseudonymised data are used; The discrete choice methodology described in this paper written and continued informed consent will be obtained enables persons with dementia and informal caregivers from the participants prior to participation. This is consistent to participate in policy formulation and evaluation. It is with current European legislation under the General Data assumed that this will help to avoid crisis situations and Protection Regulation. This study will abide by the Declara- improve the quality of life of persons with dementia and tion of Helsinki and present ethical requirements. their informal caregivers. Furthermore, the outcome of the final DCE will be a ranking of the most preferred care Author affiliations components represented in a care package. This helps Geriatrics, Amsterdam UMC Locatie AMC, Amsterdam, Noord- Holland, The health insurers and the ministry of health to maximise Netherlands their chances for designing healthcare packages that are Amsterdam Public Health Research Institute, Amsterdam, North Holland, The appropriate, useful and meaningful. Netherlands Department of Psychology, Education and Child Studies, Erasmus University Furthermore, this study protocol provides an important Rotterdam, Erasmus School of Social and Behavioural Sciences, Rotterdam, Zuid- methodological contribution. It is a clear guide on how Holland, The Netherlands to build an inclusive DCE, covering the important meth- Pharos Center of Expertise on Health Disparities, Utrecht, The Netherlands odological choices throughout the required study phases. Department of Language, Literature and Communication, Vrije Universiteit Amsterdam, Amsterdam, Noord- Holland, The Netherlands Moreover, it provides guidelines on how to include Erasmus Choice Modelling Centre, Erasmus University Rotterdam, Rotterdam, The under- represented groups in DCEs. The methodolog- Netherlands ical choices described to help include persons with Erasmus School of Health Policy & Management, Erasmus University Rotterdam, dementia with a migration background, can be used to Rotterdam, The Netherlands include other under- represented groups such as people 50 51 with low (health) literacy. Finally, this study provides Contributors JLM- V conceptualised the study and developed the study design together with the other researchers. IV and JW contributed to the development of an example of how to overcome language barriers in the study design, data collection and analysis. The authors provided input for the research and knowledge dissemination. study design from their own area of expertise; inclusive research (CS and ÖU-B), qualitative research (NHML), discrete choice experiments (EdB-G and JDS). IV wrote the manuscript, the coauthors read, edited and approved the final version. Strengths and limitations of this study A strength of this study will be that it is the first study to Funding This work was supported by Alzheimer Nederland, (WE,06- 2021- 04). In addition, grant support was from The Netherlands Organisation for Scientific include informal caregivers and persons with dementia to Research (https://www.nwo.nl/en) (NWO- Talent- Scheme- Vidi- Grant No. identify AIP preferences that has been codesigned with 09150171910002) to EdB- G. health insurers, policy- makers, patient advocacy groups, Competing interests None declared. healthcare professionals, researchers, informal caregivers Patient and public involvement Patients and/or the public were involved in the and persons with dementia. Innovative and rigorous design, or conduct, or reporting, or dissemination plans of this research. Refer to economic methods will be employed to evaluate AIP pref- the Methods section for further details. erences. Another strength is the inclusion of persons with Patient consent for publication Not applicable. dementia with different migration backgrounds, which Provenance and peer review Not commissioned; externally peer reviewed. can lead to a better understanding of their needs since Supplemental material This content has been supplied by the author(s). It has they are typically underrepresented in research. not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been A limitation of this study is the generalisability of results, peer- reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and as not all migrant groups living in the Netherlands may be responsibility arising from any reliance placed on the content. Where the content included. In addition, the chosen recruitment strategies includes any translated material, BMJ does not warrant the accuracy and reliability make it unlikely for persons who do not have a diagnoses of the translations (including but not limited to local regulations, clinical guidelines, to be included in this study. Persons with communication terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise. difficulties, such as hearing or vision loss, will have more difficulties to participate in DCEs. However, the partici- Open access This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits pants ability to complete the DCE will be assessed with others to copy, redistribute, remix, transform and build upon this work for any practice choice tasks. Finally, enabling persons to partici- purpose, provided the original work is properly cited, a link to the licence is given, pate from their own homes helps to include persons with and indication of whether changes were made. See: https://creativecommons.org/ licenses/by/4.0/. limited mobility. The research team strives to make the study as inclusive as possible. ORCID iD Isabelle Vullings http://orcid.org/0000-0002-9604-3333 Ethics and dissemination Based on the study protocol, the Ethics Committee (METC) of the Amsterdam University Medical Centre REFERENCES waived the obligation for the study to undergo formal 1 Spasova S, Baeten R, Coster S, et al. Challenges in long-ter m care in Europe. A study of national policies. Brussels: European ethical approval as is described under Dutch law in the Commission, (ESPN) ESPN, 2018. Medical Research in Humans Act, January 2019 (ref 2 Organisation for Economic Cooperation and Development. Long- W23_112 #23.137). term care spendings and unit costs. Paris: OECD publishing, 2021. Vullings I, et al. BMJ Open 2023;13:e075671. doi:10.1136/bmjopen-2023-075671 7 Open access 28 Vullings I, Labrie N, Wammes JD, et al. Important components 3 Bakx P, Schut E, Wouterse B. Price setting in long- term care in the Netherlands. Erasmus School of Health Policy and Management, 2020. for Dutch In‐Home care based on qualitative interviews with persons with dementia and informal Caregivers. Health Expect 4 Alders P, Schut FT. The 2015 long-term car e reform in the Netherlands: getting the financial incentives right. Health Policy 2020;23:1412–9. 29 Wammes JD, Labrie NHM, Agogo GO, et al. Persons with dementia 2019;123:312–6. 5 Maarse JAMH, Jeurissen PPP. The policy and politics of the and informal Caregivers Prioritizing care: a Mixed‐Methods study. Alzheimers Dement (N Y) 2021;7:e12193. 2015 long- term care reform in the Netherlands. Health Policy 2016;120:241–5. 30 Lillekroken D, Halvorsrud L, Gulestø R, et al. Family Caregivers’ experiences of providing care for family members from minority 6 RIVM. Effecten Van Vergrijzing steeds Beter Zichtbaar in Uitgaven Gezondheidszorg. 2022. Available: https://www.rivm. ethnic groups living with dementia: a qualitative systematic review. J Clin Nurs 2023;32:1625–41. nl/nieuws/effecten-van-vergrijzing-steeds-beter-zichtbaar-in- uitgaven-gezondheidszorg#:~:text=In%202019%20werd%20in% 31 Duran- Kiraç G, Uysal- Bozkir Ö, Uittenbroek R, et al. Accessibility of health care experienced by persons with dementia from ethnic 20Nederland,naar%20de%20kosten%20van%20ziekten 7 Wimo A, Guerchet M, Ali G, et al. The worldwide costs of dementia minority groups and formal and informal Caregivers: a Scoping review of European literature. Dementia (London) 2022;21:677–700. 2015 and comparisons with 2010. Alzheimer’s &Amp; Dementia 2017;13:1–7. 32 Hennink MM, Kaiser BN, Marconi VC. Code saturation versus meaning saturation: how many interviews are enough Qual Health 8 Francke A, Heide I, Sd B, et al. Een Samenhangend Beeld Van Dementie en Dementiezorg: Kerncijfers, Behoeften, Aanbod en impact. Res 2017;27:591–608. 33 Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Themarapportage van de Staat van Volksgezondheid En Zorg 2018:102. 9 MacNeil- Vroomen JL, van der Steen JT, Holman R, et al. Research in Psychology 2006;3:77–101. 34 Braun V, Clarke V. Reflecting on Reflexive thematic analysis. Hospital deaths increased after reforms regardless of dementia status: an interrupted time- series analysis. J Am Med Dir Assoc Qualitative Research in Sport, Exercise and Health 2019;11:589–97. 2021;22:1507–11. 10 van der Roest HG, Meiland FJM, Comijs HC, et al. What do 35 Corfman KP, Lehmann DR. Models of cooperative group decision- making and relative influence: an experimental investigation of family community- dwelling people with dementia need? A survey of those who are known to care and welfare services. Int Psychogeriatr purchase decisions. J CONSUM RES 1987;14:1. 36 Hensher DA, Beck MJ, Rose JM. Accounting for preference and 2009;21:949–65. 11 van der Roest HG, Meiland FJM, Maroccini R, et al. Subjective needs scale heterogeneity in establishing whether it matters who is interviewed to reveal household automobile purchase preferences. of people with dementia: a review of the literature. Int Psychogeriatr 2007;19:559–92. Environ Resource Econ 2011;49:1–22. 37 Groen- van de Ven L, Smits C, Span M, et al. The challenges of 12 Parlevliet JL, Uysal- Bozkir Ö, Goudsmit M, et al. Prevalence of mild cognitive impairment and dementia in older non- Western immigrants shared decision making in dementia care networks. Int Psychogeriatr 2018;30:843–57. in the Netherlands: a cross- sectional study. Int J Geriatr Psychiatry 2016;31:1040–9. 38 Wammes JD, Swait JD, de Bekker- Grob EW, et al. Dyadic discrete choice experiments enable persons with dementia and informal 13 Selten J- P, Termorshuizen F, van Sonsbeek M, et al. Migration and dementia: a meta- analysis of Epidemiological studies in Europe. Caregivers to participate in health care decision making: A mixed methods study. JAD 2022;91:105–14. Psychol Med 2021;51:1838–45. 14 Schmachtenberg T, Monsees J, Hoffmann W, et al. Comparing 39 Chester H, Clarkson P, Davies L, et al. People with dementia and Carer preferences for home support services in early-stage dementia. national dementia plans and strategies in Europe - is there a focus of care for people with dementia from a migration background? BMC Aging & Mental Health 2018;22:270–9. 40 O’Philbin L, Woods B, Holmes E. People with dementia and Public Health 2020;20:784. 15 de Bekker-Gr ob EW, Ryan M, Gerard K. Discrete choice experiments Caregiver preferences for Digital life story work service interventions. A discrete choice experiment and Digital survey. Aging & Mental in health economics: a review of the literature. Health Econ 2012;21:145–72. Health 2020;24:353–61. 41 Ratcliffe J, Hutchinson C, Milte R, et al. How do people with 16 Soekhai V, de Bekker- Grob EW, Ellis AR, et al. Discrete choice experiments in health economics: past, present and future. dementia and family Carers value dementia- specific quality of life States? an Explorative‘think aloud’ study. Australas J Ageing Pharmacoeconomics 2019;37:201–26. 17 Friedel JE, Foreman AM, Wirth O. An introduction to “discrete 2019;38 Suppl 2:75–82. 42 Jaynes J, Wong WK, Xu H. Using blocked fractional factorial designs choice experiments” for behavior analysts. Behav Processes 2022;198:104628. to construct discrete choice experiments for Healthcare studies. Stat Med 2016;35:2543–60. 18 Clark MD, Determann D, Petrou S, et al. Discrete choice experiments in health economics: a review of the literature. Pharmacoeconomics 43 Uysal- Bozkir Ö, Fokkema T, MacNeil-V roomen JL, et al. Translation and validation of the de Jong Gierveld loneliness scale among older 2014;32:883–902. 19 Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting migrants living in the Netherlands. GERONB 2017;72:109–19. 44 Louviere JJ, Hensher DA, Swait JD, et al. Stated choice methods: qualitative research (COREQ): a 32- item checklist for interviews and focus groups. Int J Qual Health Care 2007;19:349–57. analysis and applications. Cambridge university press, 2000. 45 Valliant R, Dever JA, Kreuter F. Practical tools for designing and 20 Cuschieri S. The STROBE guidelines. Saudi J Anaesth 2019;13:S31–4. weighting survey samples. New York, NY: Springer, 2013. 46 Rosenow F, Winter Y, Leunikava I, et al. Relative importance 21 Reed Johnson F, Lancsar E, Marshall D, et al. Constructing experimental designs for discrete- choice experiments: report of of clinical outcomes and safety risks of antiseizure medication monotherapy for patients and physicians: discrete choice the ISPOR conjoint analysis experimental design good research practices task force. Value in Health 2013;16:3–13. experiment eliciting preferences in Real‐World study‘VOTE’ Epilepsia 22 Bridges JFP, de Bekker- Grob EW, Hauber B, et al. A roadmap for 2022;63:451–62. increasing the usefulness and impact of patient- preference studies in 47 Vo NX, Huyen Nguyen TT, Van Nguyen P, et al. Using contingent decision making in health: a good practices report of an ISPOR task valuation method to estimate adults’ willingness to pay for a force. Value Health 2023;26:153–62. future Coronavirus 2019 vaccination. Value Health Reg Issues 23 Illes J, Lawson A, McDonald PJ. Ethical considerations for discrete 2021;24:240–6. choice experiments with Caregivers. J Empir Res Hum Res Ethics 48 Basu R. Willingness- to- pay to prevent Alzheimer’s disease: a 2022;17:426–30. contingent valuation approach. Int J Health Care Finance Econ 24 Staniszewska S, Brett J, Simera I, et al. Gripp2 reporting Checklists: 2013;13:233–45. tools to improve reporting of patient and public involvement in 49 Janssen EM, Marshall DA, Hauber AB, et al. Improving the quality research. BMJ 2017;358:j3453. of discrete- choice experiments in health: how can we assess 25 Goudsmit M, Uysal- Bozkir Ö, Parlevliet JL, et al. The cross- validity and reliability. Expert Rev Pharmacoecon Outcomes Res cultural dementia screening (CCD): a new neuropsychological 2017;17:531–42. screening instrument for dementia in elderly immigrants. J Clin Exp 50 Hughson J, Woodward- Kron R, Parker A, et al. A review of Neuropsychol 2017;39:163–72. approaches to improve participation of culturally and linguistically 26 Brandt J, Spencer M, Folstein M. The telephone interview for diverse populations in clinical trials. Trials 2016;17:1–10. cognitive status. Neuropsychiatry Neuropsychol Behav Neurol 51 Woodward- Kron R, Hughson J- A, Parker A, et al. Culturally and 1988;1:111–7. linguistically diverse populations in medical research: perceptions 27 McKeown J, Clarke A, Ingleton C, et al. Actively involving people with and experiences of older Italians, their families, ethics administrators dementia in qualitative research. J Clin Nurs 2010;19:1935–43. and researchers. J Public Health Res 2016;5:667. 8 Vullings I, et al. BMJ Open 2023;13:e075671. doi:10.1136/bmjopen-2023-075671 http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png BMJ Open British Medical Journal

Eliciting preferences of persons with dementia and informal caregivers to support ageing in place in the Netherlands: a protocol for a discrete choice experiment

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Open access Protocol Eliciting preferences of persons with dementia and informal caregivers to support ageing in place in the Netherlands: a protocol for a discrete choice experiment 1,2 1,2 3 4 Isabelle Vullings , Joost Wammes, Özgül Uysal- Bozkir, Carolien Smits, 5 6,7 6,7 Nanon H M Labrie, J D Swait, Esther de Bekker- Grob, 1,2 Janet L Macneil-V roomen To cite: Vullings I, Wammes J, ABSTRACT STRENGTHS AND LIMITATIONS OF THIS STUDY Uysal- Bozkir Ö, et al. Eliciting Introduction Ageing in place (AIP) for persons with preferences of persons ⇒ This will be the first study to include informal care- dementia is encouraged by European governments and with dementia and informal givers and persons with dementia to identify ageing societies. Healthcare packages may need reassessment caregivers to support ageing in place (AIP) preferences that has been codesigned to account for the preferences of care funders, patients in place in the Netherlands: with health insurers, policy- makers, patient advo- and informal caregivers. By providing insight into people’s a protocol for a discrete cacy groups, healthcare professionals, researchers, preferences, discrete choice experiments (DCEs) can help choice experiment. BMJ Open informal caregivers and persons with dementia. develop consensus between stakeholders. This protocol 2023;13:e075671. doi:10.1136/ ⇒ Innovative and rigorous economic methods will be bmjopen-2023-075671 paper outlines the development of a Dutch national study employed to evaluate AIP preferences. to cocreate a healthcare package design methodology ► Prepublication history and ⇒ Pooling of persons with dementia with different built on DCEs that is person- centred and helps support additional supplemental material migration background may lead to better under- informal caregivers and persons with dementia to AIP. A for this paper are available standing of their needs as they are typically under- subpopulation analysis of persons with dementia with a online. To view these files, represented in research. migration background is planned due to their high risk for please visit the journal online ⇒ A limitation of this study is the generalisability (http://dx.doi.org/10.1136/ dementia and under- representation in research and care. of results as not all migrant groups living in the bmjopen-2023-075671). Methods and analysis The DCE is designed to Netherlands may be included. understand how persons with dementia and informal Received 16 May 2023 ⇒ This study is conducted in the Netherlands; findings caregivers choose between different healthcare packages. Accepted 29 November 2023 might be specific to the Dutch Healthcare setting. Qualitative methods are used to identify and prioritise important care components for persons with dementia to AIP. This will provide a list of care components that will be included in the DCE, to quantify the care needs emphasise ageing in place (AIP) as a way and preferences of persons with dementia and informal to control costs associated with population caregivers. The DCE will identify individual and joint ageing. The Netherlands is the highest preferences to AIP. The relative importance of each spender of long- term care per gross domestic attribute will be calculated. The DCE data will be analysed 2 product in the world. Most Dutch long- term with the use of a random parameters logit model. care services are paid by the national health Ethics and dissemination Ethics approval was waived insurance, with a low percentage of copay- by the Amsterdam University Medical Center (W23_112 ments. To cope with the rising long-term care #23.137). A study summary will be available on the costs, the Netherlands reformed its long- term websites of Alzheimer Nederland, Pharos and Amsterdam care policy in 2015. The reform increased Public Health institute. Results are expected to be informal care duties and encouraged older presented at (inter)national conferences, peer- reviewed 4 5 papers will be submitted, and a dissemination meeting adults to AIP. A substantial component of © Author(s) (or their will be held to bring stakeholders together. The study the Dutch long- term care costs is attributed to employer(s)) 2023. Re- use results will help improve healthcare package design for all dementia care, as it is the most costly disease permitted under CC BY. stakeholders. Published by BMJ. encompassing 10.6% of the total Dutch For numbered affiliations see healthcare budget. The dementia population end of article. is known for its requirement of complex and INTRODUCTION costly care. However, it remains unknown Correspondence to Nearly every country across Europe has how AIP has affected this population. In the Isabelle Vullings; i. vullings@ amsterdamumc. nl reformed its long- term care policy to years after the reform, preliminary results Vullings I, et al. BMJ Open 2023;13:e075671. doi:10.1136/bmjopen-2023-075671 1 Open access indicate an increased need for support with crisis situa- utility maximising manner, choosing their most preferred tions such as unplanned hospitalisations, acute nursing option based on the relative overall attractiveness of the 8 9 16 18 home admissions and hospital deaths. These crises included attributes and attribute levels. This protocol situations are not only costly, but can also compromise paper will outline the development of a Dutch national the safety and well- being of persons with dementia AIP, study to create a healthcare package design methodology, in addition to the informal caregivers expected to carry built on DCEs, that is person centred and helps support the load. both informal caregivers and persons with dementia Despite the need for evidenced-based policy to ensure to successfully AIP. Qualitative methods will be used to proper healthcare services, people with dementia and identify the care needs and preferences of persons with informal caregivers are frequently excluded from policy dementia and their informal caregivers. The results of the creation; therefore, services often do not fit with their qualitative studies will provide insights into the attributes 10 11 needs or are not provided at the right time. To support (ie, care components) that will be included in the DCE. successful AIP, identifying the care preferences of persons For the DCE, a subpopulation analysis of persons with with dementia and informal caregivers is crucial. While dementia with a migration background is planned. identifying these preferences, special attention should Aim be given to persons with dementia and informal care- The aim of this study is to identify individual and joint givers with a migration background, who are known to 12 13 preferences of persons with dementia and informal care- have a higher risk of developing dementia. Despite givers for in-home support that enables AIP . We also their high risk, persons with a migration background are aim to create optimal healthcare packages for persons under- represented in research and care. It is crucial with dementia and informal caregivers to AIP. For this that persons with a migration background be included in second aim, choice model inferences will be the basis for research so healthcare package evidence is representative creating the most preferred care packages and testing the of the dementia population. To provide recommenda- uptake in a subsample of participants. This will validate tions for healthcare packages, it is subsequently needed the national model inferences and provide policy- makers to quantify the identified care preferences, which can be with high quality, understandable and implementable realised with a discrete choice experiment (DCE). evidence. DCEs are a popular stated preference method used to elicit patients’ preferences in healthcare on a large 15–17 scale. In a DCE, participants are presented with a series of alternative hypothetical scenarios. Participants METHODS are repetitively asked to select in each alternative hypo- Overview of the DCE thetical scenario their preferred option from among a In this protocol paper, the different phases of designing an presented set of options, for example, care packages. inclusive DCE study in which persons with dementia and These choice options are characterised by their attributes their informal caregivers can participate will be outlined. 15 16 and corresponding attribute levels. An example of an The study will be conducted between April 2022 and May attribute could be emotional support, described as the 2025. Figure 1 illustrates that the first phase is focused possibility to talk to someone about personal feelings or on attribute development, in which semistructured inter- concerns. The corresponding attribute levels could be views are used to identify important components of care (1) peer support group, (2) psychologist or (3) telephone for persons with dementia and informal caregivers AIP. helpline. The outcomes (choices) from DCEs are anal- In the second phase, persons with dementia and informal ysed based on the assumption that participants act in a caregivers are asked which of the care components are Figure 1 Flow chart study design to create healthcare packages based on discrete choice experiments. 2 Vullings I, et al. BMJ Open 2023;13:e075671. doi:10.1136/bmjopen-2023-075671 Open access most important to them, leading to a prioritisation of the informal caregivers. Finally, a policy brief will be written to attributes and the development of attribute levels. For ensure that the study results are known to policy creators phases 1 and 2, the Consolidated criteria for Reporting and can help to improve healthcare package design for Qualitative research guidelines for reporting qualitative older adults and informal caregivers. research will be followed to ensure important aspects of the research team, reflexivity, study design, findings Expert panel and analysis are reported. The third phase consists of Throughout the entire study, an expert panel will be a pilot which is used to test if the content of the DCE is consulted on the design and content of the DCE, and on understandable for persons with dementia and informal the inferences made from its execution. The expert panel caregivers, and if the list of included attributes and corre- will include researchers who have experience with doing sponding attribute levels is complete. Finally, in phase 4, DCEs, policy- makers, health insurers, patient advocacy the researchers conduct the DCE study. An expert panel groups, persons with dementia and informal caregivers. will be consulted during all the different phases of the The experienced researchers will be asked to provide study to reflect on the research design and findings. guidance and feedback on the methodological choices Phases 3 and 4 will be reported according to the Strength- made in the DCE design. Subsequently, the envisioned ening the Reporting of Observational Studies in Epide- outcome of the DCE study will be discussed with policy- miology guidelines, developed as a tool for authors to makers and health insurers to gain insights concerning ensure high- quality reporting of observational studies. the comprehension and appropriateness of this envi- For constructing the DCE design, the International sioned outcome. The inclusion of policy-makers and Society for Pharmacoeconomics and Outcomes Research health insurers in this phase will allow for the opportunity (ISPOR) good research practices reports will also be to make changes to the study design that help to realise 21 22 followed. implementation. Patient and public involvement Participants The DCE, including the framing of the questions, will This study aims to identify preferences of persons with be developed after focus group discussion and multiple dementia and informal caregivers AIP; therefore, persons individual interviews with persons with dementia and with dementia who live in a long-term care facility will not informal caregivers. Persons with dementia, informal be included in this study. Additional exclusion criteria caregivers and policy- makers are involved from the start will consist of (1) persons who are cognitively impaired of the study to ensure the appropriateness of the meth- to the extent that no conversation can be held with them; odology and to help come to meaningful and imple- (2) people who are unable to provide informed consent. mentable results. Study materials, such as interview It is know that dementia diagnoses are often delayed, guides, will be discussed with persons with dementia especially in migration populations ; therefore, people and informal caregivers before the start of the study to without a formal diagnosis will not be excluded a priori. ensure appropriateness and make necessary changes. However, recruiting participants through healthcare Prior to the DCE, person with dementia, informal care- professionals, day- care centres and social organisations givers and patient advocacy groups will be asked to voice that serve persons with dementia and informal care- their opinion about the final list of attributes and corre- givers will ensure that all persons have a dementia indi- sponding levels included in the DCE. Patient advocacy cation. For the final DCE, the telephone-based interview groups, persons with dementia and informal caregivers, for cognitive screening (TICS) will be administered to are to be included to make sure that the study properly describe the study participants. represents these groups, and the study results reflect their Prior to the interviews, focus groups, or DCE choice needs and preferences. The patient advocacy groups and tasks, the researchers will go through the information policy- makers are consulted through an expert panel, letter and informed consent form together with the partic- details of which can be found in the next section. The ipants to ensure proper understanding and provide the Guidance for Reporting Involvement of Patients and the opportunity to ask for clarifications. Subsequently, partic- Public 2 (GRIPP2) checklist will be followed to report the ipants will be asked to provide written informed consent. patient and public involvement. If participants are unable to write, verbal continued The DCE study will identify individual and joint prefer- informed consent will be used. Throughout the study, ences to AIP, allowing for this concept to be implemented participants will be continuously reminded that they elsewhere. The findings of this study will be published are participating in research to ensure that they remain in peer- reviewed journals and an easy-to- understand informed and are comfortable to continue. It will be summary of the results will be available through patient stressed that participation can be stopped at any moment. organisations such as Alzheimer Nederland and Pharos. Furthermore, the researchers will organise informative Attribute and level development for Dutch persons with events to communicate the study results to persons with dementia and informal caregivers dementia and informal caregivers. These events will be Study phases 1 and 2 are already partly completed, as organised together with the patient advocacy groups and interviews and focus groups were held with persons with Vullings I, et al. BMJ Open 2023;13:e075671. doi:10.1136/bmjopen-2023-075671 3 Open access Table 1 Attribute description and corresponding levels Attribute Description Possible levels In- home care I can get assistance at home with personal care such as ► Daily on a fixed time showering, dressing, or medication ► 24/7 on demand Help with daily activities I can get assistance at home with household tasks such as ► Once per week groceries, laundry, cooking, cleaning, or help with doing my ► Multiple times per week finances Social activities I can participate in social activities that I like to do ► At a day- care facility ► At home Emotional support I can talk to someone when I feel down or want to share my ► Peer support group worries ► Psychologist ► Telephone helpline ► Case manager Information about dementia I can get information about having dementia ► Telephone helpline ► Case manager Navigating the healthcare I can get assistance with organising care, and help with ► Telephone helpline system insurances ► Case manager Home adaptations and tools I can get home adaptations and tools such as a stair lift, grips in ► No reimbursements shower and toilet, or a personal alarm ► Fully reimbursed Current list of attributes may need to be updated after expert panel review and interviews with persons with dementia and informal caregivers with a migration background. dementia and informal caregivers across the Netherlands (NOOM)). The organisations will inform potential partic- 28 29 to identify attributes and levels (table 1). The iden- ipants about the study, and interested participants will be tified attributes and levels were similar for persons with provided with a bilingual invitation letter. The interviews dementia and informal caregivers; however, they prior- will be conducted in the preferred language of the partici- itised the care components differently. People with pants: Turkish, Moroccan- Arabic, Tarifit or Dutch. Inter- dementia prioritised day-to- day help and social care, while views will be conducted by trained bilingual interviewers. for informal caregivers, priorities were information about Persons with dementia and informal caregivers will be dementia, organisation of care and emotional support. interviewed separately. However, since it is important that Unfortunately, no persons with a migration background participants feel comfortable, if they strongly wish to be were included in these qualitative studies. Therefore, the interviewed together this will be permitted. interviews and focus groups will be repeated with persons The interviews will be semistructured, which means with dementia and informal caregivers with a migration that an interview guide (online supplemental file 1) will background to ensure the attributes and levels are appli- be used to provide some structure, while leaving room cable to this part of society as they have a higher risk for for new topics to be brought up by the participants. The dementia compared with people with non-migration interview guide will generally be based on the guide background. (online supplemental file 2) of the interview study for persons with non- migration backgrounds, with addi- Attribute identification for persons with dementia and tions based on findings of previous studies that focused informal caregivers with a migration background on persons with dementia and informal caregivers with To identify care preferences and needs of persons with 30 31 a migration background. The cultural sensitivity and dementia and informal caregivers with a migration back- understandability of the interview guide will be assessed ground, semistructured interviews will be performed by Pharos, centre of expertise in health disparities and across the Netherlands. Participants will primarily include experienced researchers (CS and ÖUB). The inter- persons with dementia and informal caregivers with a views will be transcribed and translated by the bilingual Turkish, Moroccan or Surinamese background as these interviewer who conducted the interviews. Respondents are the largest groups of non-western immigrants in the will have the opportunity to review the translated tran- Netherlands and they are known to have a high risk for scripts, which will help to ensure proper interpretation developing dementia. People living with dementia who and provide opportunities to give clarifications. It will do not speak Dutch as their first language will be welcome be stressed that this is voluntary; participants are free to participate. to choose if they wish to read the translated transcripts. Participants will be recruited with the help of day- Interviews will be held until data saturation is reached, care centres, general practitioners and organisations which is expected after approximately 10 interviews for that serve persons with a migration background (Pharos and Netwerk van Organisaties van Ouderen Migranten each group. Reflexive thematic analysis will be used to 4 Vullings I, et al. BMJ Open 2023;13:e075671. doi:10.1136/bmjopen-2023-075671 Open access 33 34 analyse and identify relevant patterns within the data. of choice tasks and the appropriateness of the included Coding of the data will be done with both a deductive attributes and attribute levels. Furthermore, the pilot and inductive approach, starting with certain theoret- will help to illustrate if the length of the DCE survey is ical or empirical assumptions, with an open approach. acceptable. Based on the pilot, changes might need to be The results will provide a list of attributes (care compo- made to the DCE survey to increase appropriateness and nents) that are important for persons with dementia and understandability, as well as manage survey complexity informal caregivers with a migration background. for persons with dementia. The final DCE Attribute prioritisation and the development of attribute levels The final DCE will include three rounds: (1) persons with To understand the relative importance of the care compo- dementia, (2) informal caregivers and (3) dyadic rounds nents that are identified, mixed focus group sessions will with both the persons with dementia and informal care- be held with a new sample of persons with dementia and givers. The first two rounds will help to elucidate indi- informal caregivers with a Turkish, Moroccan or Suri- vidual preferences, while the dyadic round will help to namese background. Focus groups create an environ- elucidate joint preferences. Identifying joint preferences ment in which participants can share their experiences is important since decisions about care are often made and build on each other’s knowledge. To ensure a free 35–37 by multiple individuals. Furthermore, the dyadic discussion, informal caregivers will not be participating DCE round can pose as an opportunity for the person in the same focus group as their person with dementia. with dementia and their informal caregiver to have an Participants will be recruited with the help of previously in- depth conversation about their preferences and needs, mentioned organisations. To facilitate dialogue between which could lead to better mutual understanding. It is the participants, focus groups will include participants likely that preference adaptation will occur; however, as with similar migration backgrounds and linguistic pref- shown in previous research, this adaptation can be from erences. The focus groups will be conducted by trained both the person with dementia and the informal care- bicultural interviewers. The focus group session will giver. Informal caregivers were not primarily dominant include a quantitative ranking exercise in which persons in dyadic DCE rounds, in fact the informal caregivers with dementia and informal caregivers will be asked to were found to be helpful in assisting the person with list the care components from most important to least dementia to complete more choice tasks. An active role important. For this ranking exercise, cards with the of the researcher administering the DCE choice tasks previously identified care characteristics, containing is needed to help guide the dialogue in the joint DCE visual and written information will be used. During the rounds. People with dementia will be encouraged to state focus group, the reasoning behind the choices made in their preference and motivation first to minimise agency the ranking exercise will be discussed. of informal caregivers. Focus groups will be held until saturation is reached, The complexity of a DCE can be challenging for which is expected after approximately six sessions, each 39–41 persons with dementia. However, a recent study including persons with dementia (n=4) and informal found that persons with moderate cognitive impairment caregivers (n=4). Focus groups will be transcribed and can complete DCE choice tasks. Therefore, persons will translated by the trained bilingual interviewers. Partici- not be excluded a priori based on their level of cognitive pants will be provided with the opportunity to read the impairment. The following options in the DCE design translated transcripts and, if necessary, provide clarifica- will help to lower the cognitive burden for persons with tions. Reflexive thematic analysis will be used to analyse 33 34 dementia. First, illustrations will be used to visualise the and identify relevant patterns within the data. Coding choice sets and included attributes. Figure 2 provides an of the data will be done with both a deductive and induc- example of such an illustration. The illustrations are tive approach, starting with certain theoretical or empir- made by a graphic designer who has experience illus- ical assumptions, with an open approach. The results trating pictures for persons with cognitive impairments. will consist of a ranking of the attributes (care compo- Second, the DCE will have binary choice tasks, asking nents) and a description of the attribute levels (character- participants to choose between packages A and B, instead istics of care components). of including multiple alternatives (eg, additional pack- DCE pilot ages C or D). Participant will complete a maximum of six For the DCE pilot, the list of attributes that has previously choice tasks, consisting of three attributes and two corre- 38 42 been identified (table 1) will be updated with the find- sponding levels. Blocked fractional factorial designs ings of the qualitative studies with persons with dementia will be created with the use of Ngene. Finally, the DCE will and informal caregivers with a migration background. start with a practice round to test decision making skills. The pilot will include both individual DCE rounds with Persons with dementia will be asked to think aloud while the persons with dementia (n=4) and informal caregivers completing the choice tasks. The think-aloud technique (n=4), and dyadic rounds with both the person with is commonly used in research to make thought processes dementia and their informal caregiver. The in- person pilot of participants observable for researchers. It has been will include the testing of respondents’ understanding found useful in supporting persons with dementia to Vullings I, et al. BMJ Open 2023;13:e075671. doi:10.1136/bmjopen-2023-075671 5 Open access and joint DCE round will be analysed with summary statis- tics and bivariate comparisons. A contingent valuation approach will be used to identify the participants’ willingness to pay (WTP) for the most 47 48 preferred programmes outside of the DCE. While out- of- pockets costs for social care does not currently occur in the Netherlands yet, this may soon change. Therefore, an indication of the WTP is helpful for policy-makers and health insurers. At the end of the DCE, participants indicate their preferred envisioned package over their current service provision, they will be asked if they are willing to pay an additional monthly out-of- pocket fee of €50 for this package. If participants answer this question with yes, additional questions with out- of- pocket fees of €100 and €200 will be asked. If participants answered no to the initial question of €50, similar questions with an Figure 2 Illustrated discrete choice experiment choice amount of €25 and €12,50 will be asked. Finally, partic- tasks. ipants will be asked to indicate their maximum WTP in an open-ended question. For the analysis, the maximum price expressed in the open-ended question will be used complete DCE choice tasks, as it enables researchers to and summarised through the median and IQR. observe difficulties and, if needed, provide guidance or remind persons with dementia about the rules of the choice tasks. Statistical analysis The DCE data will be analysed with a random parameters Power calculation logit (RPL) model. For each attribute level, coefficient Envisioning a two- alternative choice task and four repli- estimates will be estimated from the RPL model, which cates per dyad, a minimum sample size n≥576 is recom- can be interpreted as the relative preference weight. mended for a DCE to reliably achieve 95% CIs on true Individual and joint models will be created to evaluate uptake probabilities of 0.4. Therefore, the goal will preferences of persons with dementia and informal care- be to achieve a sample size of 600 dyads of persons with givers at the individual and joint DCE rounds. dementia and informal caregivers, covering all targeted To analyse if persons with dementia and informal care- groups. Purposive sampling of minority groups, people givers with a migration background have different pref- living in urban and rural areas, and people with different erences, post hoc subgroup analysis will be conducted. educational levels will be used. In addition, sampling Dummy coded variables will be added to the RPL model across the country will help to make the healthcare to identify participants that are part of given subgroups. package as nationally representative as possible. The attribute levels in the RPL model will be interacted Participants will be recruited through general prac- with the dummy variable, and all interaction terms will be titioners, geriatricians, day-care facilities and organi - added to the original RPL model. The estimated param- sations that serve persons with dementia and informal eters of the interaction terms will illustrate the difference caregivers (Alzheimer Nederland, Pharos, NOOM). The in preferences between the subgroup (persons with a professionals will inform potential participants about the migration background) and the reference group (persons study, and provide them with the (bilingual) information without a migration background). This method can also letter. With the participants’ consent, the researchers will be used to analyse if there are different preferences based obtain their contact information form the professionals. on other subgroups, such as socioeconomic status. The researchers will contact the potential participant Finally, the attributes with the highest relative impor- by telephone to answer any remaining questions and to 26 tance can be used to build most preferred programmes administer the TICS. The researchers will schedule an (healthcare packages). To ensure validity of these results appointment at the participants home to complete the for health insurers and government, the uptake of the DCE choice tasks in person. most preferred programmes will be tested on a subsa- mple of the target population. Model predictions will Outcomes be verified by creating the most preferred programmes The main outcome of the DCE study will be the relative according to the preferences of persons with dementia importance of the attributes (care components). The rela- and informal caregivers that were found in the DCE. A tive importance of each attribute will be calculated as the new sample will be collected of 50–60 participants to test difference between the preference weights of the most the uptake of the most preferred programmes by asking and least preferred level of that attribute. The relative importance will be scaled so that 10 indicates the most participants which one they would rather have over their preferred attribute. The difference between individual current service provision. 6 Vullings I, et al. BMJ Open 2023;13:e075671. doi:10.1136/bmjopen-2023-075671 Open access DISCUSSION Consent This is a prospective study and pseudonymised data are used; The discrete choice methodology described in this paper written and continued informed consent will be obtained enables persons with dementia and informal caregivers from the participants prior to participation. This is consistent to participate in policy formulation and evaluation. It is with current European legislation under the General Data assumed that this will help to avoid crisis situations and Protection Regulation. This study will abide by the Declara- improve the quality of life of persons with dementia and tion of Helsinki and present ethical requirements. their informal caregivers. Furthermore, the outcome of the final DCE will be a ranking of the most preferred care Author affiliations components represented in a care package. This helps Geriatrics, Amsterdam UMC Locatie AMC, Amsterdam, Noord- Holland, The health insurers and the ministry of health to maximise Netherlands their chances for designing healthcare packages that are Amsterdam Public Health Research Institute, Amsterdam, North Holland, The appropriate, useful and meaningful. Netherlands Department of Psychology, Education and Child Studies, Erasmus University Furthermore, this study protocol provides an important Rotterdam, Erasmus School of Social and Behavioural Sciences, Rotterdam, Zuid- methodological contribution. It is a clear guide on how Holland, The Netherlands to build an inclusive DCE, covering the important meth- Pharos Center of Expertise on Health Disparities, Utrecht, The Netherlands odological choices throughout the required study phases. Department of Language, Literature and Communication, Vrije Universiteit Amsterdam, Amsterdam, Noord- Holland, The Netherlands Moreover, it provides guidelines on how to include Erasmus Choice Modelling Centre, Erasmus University Rotterdam, Rotterdam, The under- represented groups in DCEs. The methodolog- Netherlands ical choices described to help include persons with Erasmus School of Health Policy & Management, Erasmus University Rotterdam, dementia with a migration background, can be used to Rotterdam, The Netherlands include other under- represented groups such as people 50 51 with low (health) literacy. Finally, this study provides Contributors JLM- V conceptualised the study and developed the study design together with the other researchers. IV and JW contributed to the development of an example of how to overcome language barriers in the study design, data collection and analysis. The authors provided input for the research and knowledge dissemination. study design from their own area of expertise; inclusive research (CS and ÖU-B), qualitative research (NHML), discrete choice experiments (EdB-G and JDS). IV wrote the manuscript, the coauthors read, edited and approved the final version. Strengths and limitations of this study A strength of this study will be that it is the first study to Funding This work was supported by Alzheimer Nederland, (WE,06- 2021- 04). In addition, grant support was from The Netherlands Organisation for Scientific include informal caregivers and persons with dementia to Research (https://www.nwo.nl/en) (NWO- Talent- Scheme- Vidi- Grant No. identify AIP preferences that has been codesigned with 09150171910002) to EdB- G. health insurers, policy- makers, patient advocacy groups, Competing interests None declared. healthcare professionals, researchers, informal caregivers Patient and public involvement Patients and/or the public were involved in the and persons with dementia. Innovative and rigorous design, or conduct, or reporting, or dissemination plans of this research. Refer to economic methods will be employed to evaluate AIP pref- the Methods section for further details. erences. Another strength is the inclusion of persons with Patient consent for publication Not applicable. dementia with different migration backgrounds, which Provenance and peer review Not commissioned; externally peer reviewed. can lead to a better understanding of their needs since Supplemental material This content has been supplied by the author(s). It has they are typically underrepresented in research. not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been A limitation of this study is the generalisability of results, peer- reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and as not all migrant groups living in the Netherlands may be responsibility arising from any reliance placed on the content. Where the content included. In addition, the chosen recruitment strategies includes any translated material, BMJ does not warrant the accuracy and reliability make it unlikely for persons who do not have a diagnoses of the translations (including but not limited to local regulations, clinical guidelines, to be included in this study. Persons with communication terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise. difficulties, such as hearing or vision loss, will have more difficulties to participate in DCEs. However, the partici- Open access This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits pants ability to complete the DCE will be assessed with others to copy, redistribute, remix, transform and build upon this work for any practice choice tasks. Finally, enabling persons to partici- purpose, provided the original work is properly cited, a link to the licence is given, pate from their own homes helps to include persons with and indication of whether changes were made. See: https://creativecommons.org/ licenses/by/4.0/. limited mobility. The research team strives to make the study as inclusive as possible. ORCID iD Isabelle Vullings http://orcid.org/0000-0002-9604-3333 Ethics and dissemination Based on the study protocol, the Ethics Committee (METC) of the Amsterdam University Medical Centre REFERENCES waived the obligation for the study to undergo formal 1 Spasova S, Baeten R, Coster S, et al. Challenges in long-ter m care in Europe. A study of national policies. Brussels: European ethical approval as is described under Dutch law in the Commission, (ESPN) ESPN, 2018. Medical Research in Humans Act, January 2019 (ref 2 Organisation for Economic Cooperation and Development. Long- W23_112 #23.137). term care spendings and unit costs. Paris: OECD publishing, 2021. Vullings I, et al. BMJ Open 2023;13:e075671. doi:10.1136/bmjopen-2023-075671 7 Open access 28 Vullings I, Labrie N, Wammes JD, et al. Important components 3 Bakx P, Schut E, Wouterse B. Price setting in long- term care in the Netherlands. Erasmus School of Health Policy and Management, 2020. for Dutch In‐Home care based on qualitative interviews with persons with dementia and informal Caregivers. Health Expect 4 Alders P, Schut FT. The 2015 long-term car e reform in the Netherlands: getting the financial incentives right. Health Policy 2020;23:1412–9. 29 Wammes JD, Labrie NHM, Agogo GO, et al. Persons with dementia 2019;123:312–6. 5 Maarse JAMH, Jeurissen PPP. The policy and politics of the and informal Caregivers Prioritizing care: a Mixed‐Methods study. Alzheimers Dement (N Y) 2021;7:e12193. 2015 long- term care reform in the Netherlands. Health Policy 2016;120:241–5. 30 Lillekroken D, Halvorsrud L, Gulestø R, et al. Family Caregivers’ experiences of providing care for family members from minority 6 RIVM. Effecten Van Vergrijzing steeds Beter Zichtbaar in Uitgaven Gezondheidszorg. 2022. Available: https://www.rivm. ethnic groups living with dementia: a qualitative systematic review. J Clin Nurs 2023;32:1625–41. nl/nieuws/effecten-van-vergrijzing-steeds-beter-zichtbaar-in- uitgaven-gezondheidszorg#:~:text=In%202019%20werd%20in% 31 Duran- Kiraç G, Uysal- Bozkir Ö, Uittenbroek R, et al. Accessibility of health care experienced by persons with dementia from ethnic 20Nederland,naar%20de%20kosten%20van%20ziekten 7 Wimo A, Guerchet M, Ali G, et al. The worldwide costs of dementia minority groups and formal and informal Caregivers: a Scoping review of European literature. Dementia (London) 2022;21:677–700. 2015 and comparisons with 2010. Alzheimer’s &Amp; Dementia 2017;13:1–7. 32 Hennink MM, Kaiser BN, Marconi VC. Code saturation versus meaning saturation: how many interviews are enough Qual Health 8 Francke A, Heide I, Sd B, et al. Een Samenhangend Beeld Van Dementie en Dementiezorg: Kerncijfers, Behoeften, Aanbod en impact. Res 2017;27:591–608. 33 Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Themarapportage van de Staat van Volksgezondheid En Zorg 2018:102. 9 MacNeil- Vroomen JL, van der Steen JT, Holman R, et al. Research in Psychology 2006;3:77–101. 34 Braun V, Clarke V. Reflecting on Reflexive thematic analysis. Hospital deaths increased after reforms regardless of dementia status: an interrupted time- series analysis. J Am Med Dir Assoc Qualitative Research in Sport, Exercise and Health 2019;11:589–97. 2021;22:1507–11. 10 van der Roest HG, Meiland FJM, Comijs HC, et al. What do 35 Corfman KP, Lehmann DR. Models of cooperative group decision- making and relative influence: an experimental investigation of family community- dwelling people with dementia need? A survey of those who are known to care and welfare services. Int Psychogeriatr purchase decisions. J CONSUM RES 1987;14:1. 36 Hensher DA, Beck MJ, Rose JM. Accounting for preference and 2009;21:949–65. 11 van der Roest HG, Meiland FJM, Maroccini R, et al. Subjective needs scale heterogeneity in establishing whether it matters who is interviewed to reveal household automobile purchase preferences. of people with dementia: a review of the literature. Int Psychogeriatr 2007;19:559–92. Environ Resource Econ 2011;49:1–22. 37 Groen- van de Ven L, Smits C, Span M, et al. The challenges of 12 Parlevliet JL, Uysal- Bozkir Ö, Goudsmit M, et al. Prevalence of mild cognitive impairment and dementia in older non- Western immigrants shared decision making in dementia care networks. Int Psychogeriatr 2018;30:843–57. in the Netherlands: a cross- sectional study. Int J Geriatr Psychiatry 2016;31:1040–9. 38 Wammes JD, Swait JD, de Bekker- Grob EW, et al. Dyadic discrete choice experiments enable persons with dementia and informal 13 Selten J- P, Termorshuizen F, van Sonsbeek M, et al. Migration and dementia: a meta- analysis of Epidemiological studies in Europe. Caregivers to participate in health care decision making: A mixed methods study. JAD 2022;91:105–14. Psychol Med 2021;51:1838–45. 14 Schmachtenberg T, Monsees J, Hoffmann W, et al. Comparing 39 Chester H, Clarkson P, Davies L, et al. People with dementia and Carer preferences for home support services in early-stage dementia. national dementia plans and strategies in Europe - is there a focus of care for people with dementia from a migration background? BMC Aging & Mental Health 2018;22:270–9. 40 O’Philbin L, Woods B, Holmes E. People with dementia and Public Health 2020;20:784. 15 de Bekker-Gr ob EW, Ryan M, Gerard K. Discrete choice experiments Caregiver preferences for Digital life story work service interventions. A discrete choice experiment and Digital survey. Aging & Mental in health economics: a review of the literature. Health Econ 2012;21:145–72. Health 2020;24:353–61. 41 Ratcliffe J, Hutchinson C, Milte R, et al. How do people with 16 Soekhai V, de Bekker- Grob EW, Ellis AR, et al. Discrete choice experiments in health economics: past, present and future. dementia and family Carers value dementia- specific quality of life States? an Explorative‘think aloud’ study. Australas J Ageing Pharmacoeconomics 2019;37:201–26. 17 Friedel JE, Foreman AM, Wirth O. An introduction to “discrete 2019;38 Suppl 2:75–82. 42 Jaynes J, Wong WK, Xu H. Using blocked fractional factorial designs choice experiments” for behavior analysts. Behav Processes 2022;198:104628. to construct discrete choice experiments for Healthcare studies. Stat Med 2016;35:2543–60. 18 Clark MD, Determann D, Petrou S, et al. Discrete choice experiments in health economics: a review of the literature. Pharmacoeconomics 43 Uysal- Bozkir Ö, Fokkema T, MacNeil-V roomen JL, et al. Translation and validation of the de Jong Gierveld loneliness scale among older 2014;32:883–902. 19 Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting migrants living in the Netherlands. GERONB 2017;72:109–19. 44 Louviere JJ, Hensher DA, Swait JD, et al. Stated choice methods: qualitative research (COREQ): a 32- item checklist for interviews and focus groups. Int J Qual Health Care 2007;19:349–57. analysis and applications. Cambridge university press, 2000. 45 Valliant R, Dever JA, Kreuter F. Practical tools for designing and 20 Cuschieri S. The STROBE guidelines. Saudi J Anaesth 2019;13:S31–4. weighting survey samples. New York, NY: Springer, 2013. 46 Rosenow F, Winter Y, Leunikava I, et al. Relative importance 21 Reed Johnson F, Lancsar E, Marshall D, et al. Constructing experimental designs for discrete- choice experiments: report of of clinical outcomes and safety risks of antiseizure medication monotherapy for patients and physicians: discrete choice the ISPOR conjoint analysis experimental design good research practices task force. Value in Health 2013;16:3–13. experiment eliciting preferences in Real‐World study‘VOTE’ Epilepsia 22 Bridges JFP, de Bekker- Grob EW, Hauber B, et al. A roadmap for 2022;63:451–62. increasing the usefulness and impact of patient- preference studies in 47 Vo NX, Huyen Nguyen TT, Van Nguyen P, et al. Using contingent decision making in health: a good practices report of an ISPOR task valuation method to estimate adults’ willingness to pay for a force. Value Health 2023;26:153–62. future Coronavirus 2019 vaccination. Value Health Reg Issues 23 Illes J, Lawson A, McDonald PJ. Ethical considerations for discrete 2021;24:240–6. choice experiments with Caregivers. J Empir Res Hum Res Ethics 48 Basu R. Willingness- to- pay to prevent Alzheimer’s disease: a 2022;17:426–30. contingent valuation approach. Int J Health Care Finance Econ 24 Staniszewska S, Brett J, Simera I, et al. Gripp2 reporting Checklists: 2013;13:233–45. tools to improve reporting of patient and public involvement in 49 Janssen EM, Marshall DA, Hauber AB, et al. Improving the quality research. BMJ 2017;358:j3453. of discrete- choice experiments in health: how can we assess 25 Goudsmit M, Uysal- Bozkir Ö, Parlevliet JL, et al. The cross- validity and reliability. Expert Rev Pharmacoecon Outcomes Res cultural dementia screening (CCD): a new neuropsychological 2017;17:531–42. screening instrument for dementia in elderly immigrants. J Clin Exp 50 Hughson J, Woodward- Kron R, Parker A, et al. A review of Neuropsychol 2017;39:163–72. approaches to improve participation of culturally and linguistically 26 Brandt J, Spencer M, Folstein M. The telephone interview for diverse populations in clinical trials. Trials 2016;17:1–10. cognitive status. Neuropsychiatry Neuropsychol Behav Neurol 51 Woodward- Kron R, Hughson J- A, Parker A, et al. Culturally and 1988;1:111–7. linguistically diverse populations in medical research: perceptions 27 McKeown J, Clarke A, Ingleton C, et al. Actively involving people with and experiences of older Italians, their families, ethics administrators dementia in qualitative research. J Clin Nurs 2010;19:1935–43. and researchers. J Public Health Res 2016;5:667. 8 Vullings I, et al. BMJ Open 2023;13:e075671. doi:10.1136/bmjopen-2023-075671

Journal

BMJ Open – British Medical Journal

Published: Dec 10, 2023

Keywords: dementia; patient participation; decision making

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