Author: Excelc Team

By Eirini Saloniki, Research Associate at Centre for Health Services Studies & Personal Social Services Research Unit, University of Kent,
Health preferences research is now a substantial field in itself, known not least for its contribution to assessing different health and care services by measuring the outcomes that people experience in using these services. Well-known and comprehensive indicators are used to measure these outcomes whereby people place different values on the different ways that services (can) impact their quality of life.

Preference studies have traditionally used face-to-face (paper-and-pencil or computer-assisted) interviews to gather such data. Despite their good completion rates and reliability, face-to-face interviews are costly and time-consuming. A shift towards internet surveys has been gaining popularity, allowing for accurate recording of response time and for targeting groups of respondents quickly at lower cost. Nevertheless, internet surveys have also been criticised, with poor data quality and difficulty in achieving sample representativeness being the main concerns. Can the advantages and disadvantages of the different methods of data collection be a source of variation in the results? Yes, not only as a result of how someone responds, but also because of who responds to each survey.

Several studies in environmental and health economics have compared preferences elicited from face-to-face interviews and internet surveys, but the evidence is mixed. The discrete choice experiment (DCE) technique was commonly used amongst the different studies to elicit preferences while the sampling process varied considerably. Another technique – best-worst scaling (BWS) – known for its lower cognitive burden compared to the DCE, has not been used to compare preferences elicited from different data collection methods. Nor have preferences been compared across the different methods in the context of long-term care.

In this paper, for the first time, we compare preferences elicited from face-to-face and internet surveys for the best-worst scaling (BWS) task using the Adult Social Care Outcomes Toolkit (ASCOT) service user measure. ASCOT measures social care-related quality of life (SCRQoL) across eight domains (accommodation cleanliness and comfort, safety, food and drink, personal care, control over daily life, social participation and involvement, dignity, occupation and employment), and has been recommended by NICE for use in the economic evaluation of social care services. This paper is part of a larger study (EXCELC) that aimed to establish relative preferences for care-related outcomes for people using long-term care.

The BWS experiment involving the ASCOT measure was included in a face-to-face (n=500) and an online (n=1001) survey and was completed by a sample targeted to be representative of the general population in England. Each respondent in both surveys was presented with a set of eight hypothetical scenarios. Each scenario contained eight attributes reflecting the eight ASCOT domains. In each scenario, the respondent was firstly asked to select the best (or most preferred) choice, with the selected choice being greyed out. The same process was repeated for the worst (or least preferred) choice, the second best, and second worst choices. Thus, each respondent made in total 32 choices.

We used a multinomial logit framework to analyse the data, ensuring that it is appropriate to pool the two datasets (internet and face-to-face). The initial pooled model assumed that there are no differences in observable characteristics between the two samples (i.e. no taste heterogeneity exists), but it included a parameter to control for scale differences between the two datasets. An additional (pooled) model controlled for differences in the sample composition of the two datasets as well as scale heterogeneity between different groups of respondents across the two datasets. All models took into account the repeated nature of the data.

The results from our first pooled model revealed several but small differences in preferences for SCRQoL across the two methods of data collection, with half of the coefficient differences compared (15 out of 30) found to be statistically significant at the 5% level. The number of significant differences compared reduced substantially to five when further controlling for observable and unobservable characteristics between the two samples. The limited (and small in value) significant differences were mostly at attribute levels indicating higher needs. A number of significant scale effects were also identified – for instance, participants were less certain when making their worst choices than when making their best choices which relates to framing effects reported in the preferences literature.

Overall, we find fairly similar preferences for SCRQoL between the two methods of data collection, suggesting that we can be confident enough in the internet results from a practical point of view. There is scope for future studies to not only explore a different sampling frame, but also consider providing sufficient clarifications to internet respondents in an attempt to minimise the level of uncertainty in the choice process for this group.

For a copy of the full paper please see: http://dx.doi.org/10.1007/s11136-019-02172-2

Autorinnen: Judith Kieninger, Ruth Fulterer, Assma Hajji, Judith Litschauer und Birgit Trukeschitz (Wirtschaftsuniversität Wien, Forschungsinstitut für Altersökonomie)

Über 400 Interviews mit Menschen, die mobile Betreuungs- und Pflegedienstleistungen in Österreich beziehen, waren im Rahmen des Forschungsprojekts „EXCELC – Lebensqualität durch Betreuung und Pflege“ 2016/2017 geplant. Über 600 wurden erfolgreich durchgeführt. Die Datenerhebung erfolgte in Zusammenarbeit mit dem Sozialministerium und wurde unterstützt von Pflege- und Betreuungsorganisationen sowie den Verwaltungseinheiten in den Bundesländern.

Über 60 geschulte InterviewerInnen waren im Auftrag des Forschungsinstituts für Altersökonomie unterwegs, um betreuungsbedürftige ältere Menschen in deren Haushalten zu befragen. Gut die Hälfte davon teilte ihre Erfahrungen und Eindrücke zum Leben und der Versorgungssituation dieser Menschen, die wir im Folgenden wiedergeben möchten. Wichtig ist es uns, an dieser Stelle festzuhalten, dass hier von den Eindrücken, Blitzlichtern und Assoziationen der InterviewerInnen berichtet wird. Die Ergebnisse der quantitativen Auswertungen der erhobenen Daten werden für September 2018 erwartet.

„Ein Stück Leben“

Die Interviews mit den pflegebedürftigen Menschen und die darüber hinaus geführten Gespräche gewährten den InterviewerInnen tiefgehendere Einblicke in die Versorgungssituation. „Die Damen sind sehr lebendig in ihren Erzählungen. Sie teilen mir ein Stück ihres Lebens mit“ berichtete uns eine Interviewerin zufrieden. So brachten die GesprächspartnerInnen auch ihre Wünsche, Ängste und Hoffnung im Kontext ihrer Betreuungssituation zum Ausdruck.

„Pflegebedürftig“ – hinter diesem Wort steckt eine große Vielfalt an Lebenswelten

Manche der von uns interviewten Menschen sind geistig noch topfit, aber leben in einem gebrechlichen Körper. Darunter auch Menschen, die den Anschluss an die Digitalisierung der Kommunikation geschafft haben, wie Herr S., der sich regelmäßig die aktuellsten Apps auf sein Smartphone lädt oder Frau M., die mit ihren im Ausland lebenden Enkelkindern per Skype telefoniert. Auch abseits der Digitalisierung wissen sich die Menschen oft noch durch kreative Techniken gegen ihre körperlichen Einschränkungen zur Wehr zu setzen, wie Frau L. die sich mithilfe einer Schnur und einem Korb Lebensmittel oder Post in den 1. Stock hinaufbefördert.

Andere wiederum sind dem kognitiven Abbau bereits stärker ausgeliefert, tun sich schwer mit dem Gedächtnis, leiden unter Depressionen oder anderen psychischen Erkrankungen.

Die eigene Hilfsbedürftigkeit akzeptieren – eine Herausforderung

Die Akzeptanz der eigenen Hilfsbedürftigkeit und die Annahme von Hilfe ist der erste wichtige Schritt, der eine Herausforderung darstellt. Dabei kann es auch zu einem Rollentausch kommen, wie es bei Frau W. der Fall war. Frau W. hat sich ihr Leben lang um ihre körperlich behinderte Tochter gekümmert und ist nun selbst aufgrund mentaler Schwierigkeiten auf deren Hilfe angewiesen. Bedauern die Einen auch nach Jahren der Hilfsbedürftigkeit ihr eingeschränktes Leben aufgrund körperlicher Schwäche, haben sich die Anderen bereits mit der neuen Lebenssituation abgefunden. Das „Sich Abfinden und Arrangieren“ wird während des Interviews thematisiert, meist als Erklärung, warum es den Menschen trotz erschwerter Lebensumstände gut geht. Die InterviewerInnen bewundern den Optimismus, den die Menschen an den Tag legen, und zeigen Respekt für deren unterschiedliche Bewältigungsstrategien.

Betreuung und Pflege Zuhause nicht umfassend genug?

Bisher haben die InterviewerInnen den Eindruck gewonnen, dass die Betreuung Zuhause für den Großteil der Menschen eine wichtige Unterstützung darstellt – zumindest auf den ersten Blick. Die Betreuungsdienstleistungen ermöglichen es ihnen den Alltag in ihren eigenen vier Wänden gut zu bewältigen. Und trotzdem wird deutlich, dass die Versorgung selten über ein gewisses Mindestmaß hinausgeht und einige Bedürfnisse der Menschen auf der Strecke bleiben.

Den Berichten unserer InterviewerInnen nach sind es insbesondere die sozialen Bedürfnisse, die bei pflegebedürftigen Menschen im Alter zu kurz kommen können und auch durch die Betreuungs- und Pflegedienstleistungen derzeit nur ansatzweise abgedeckt werden. So fühlen sich die interviewten Personen zwar sauber, satt und sicher, haben jedoch oft kaum mehr Kontakt zu anderen Menschen und finden nur noch wenig Inhalt in ihrem Leben. Der Besuch der Heimhilfe oder Hauskrankenpflege kann dann zur einzigen Abwechslung in ihrem Alltag werden, doch auch hier ist die Zeit knapp bemessen. Unseren InterviewerInnen gegenüber wurde beklagt, dass durch das Dokumentieren in der Pflegemappe auch noch die wenige Zeit wegfällt, die zum Plaudern übrig bleiben könnte.

Rolle der Betreuungs- und Pflegepersonen und die Bedeutung eines zu häufigen Wechsels

Betreuungs- und Pflegepersonen werden zu wichtigen Bezugspersonen für den pflegebedürftigen Menschen. Gerade für alleinstehende Menschen, die kaum noch Kontakte nach außen haben, scheinen die Betreuungs-/Pflegekräfte gewissermaßen auch auf einer psychosozialen Ebene den Alltag ihrer KlientInnen zu erhellen. Nicht selten kommen die pflegebedürftigen Menschen ins Schwärmen, wenn sie von ihrer „Fee“ oder ihrer „wunderbaren Maria“ sprechen.

Jedoch sorgen oftmaliger Wechsel der Betreuungs- und Pflegepersonen und Unklarheit darüber, wann nun die Unterstützung wirklich kommt, bei pflegebedürftigen Menschen auch für Unmut. Es erfordere Flexibilität im Alltag und Geduld, um den neuen Betreuungs- und Pflegepersonen immer wieder zu erklären, worauf sie achten sollen. Dabei halten gerade ältere Menschen gerne an einem klar strukturierten Alltag fest und tun sich mit diesem Unsicherheitsfaktor oft schwer.

Verlässliche Betreuungsarrangements, auch in der 24-Stunden-Betreuung erwünscht

Manche Menschen, die die Erfahrung einer 24h-Betreuung machen, scheinen einen sehr liebevollen und vertrauten Umgang mit ihrer Betreuungsperson gefunden zu haben. Bei anderen klingt jedoch auch Verzweiflung und Ärger durch, wenn sie von ihrer eigenen Situation berichten. Stabile Verhältnisse in der Betreuung werden zum Wunschdenken und der Weg zu einer passenden Betreuung ist mühsam. Auch mit einer 24-Stunden Betreuung geht Unsicherheit einher, dass die Betreuungsperson wegen eines besseren Jobs weggehen könnte. Damit verbunden ist die Angst, vielleicht doch bald in ein Altersheim wechseln zu müssen.

Finanzielle Engpässe und die Auswirkungen auf die Inanspruchnahme von Betreuung und Pflege

Geldsorgen, kleine Pensionen und fehlende Mittel für die Inanspruchnahme weiterer Dienstleistungen wurden immer wieder thematisiert. Wenn der Versuch scheiterte, höheres Pflegegeld zu beantragen, ging dies daher mit Frustration und Unverständnis einher.

Informationen kommen bei den Menschen nicht immer an…

Aus den Erfahrungen der InterviewerInnen geht hervor, dass der Bedarf an Informationen relativ hoch ist und die Menschen nicht gut über die genauen Dienstleistungs- und Finanzierungsangebote Bescheid wissen. So wie Herr P., der sich nach sozialen Kontakten sehnt und nicht über die Möglichkeit von Besuchsdiensten oder Tagesstätten aufgeklärt wurde. Oder Frau D., die zum ersten Mal einen Antrag auf Pflegegeld stellen möchte und nicht weiß, an wen sie sich wenden soll. Die Informationen finden sich größtenteils „im virtuellen Netz“, einem Ort, der derzeit nur einem sehr geringen Prozentsatz der pflegebedürftigen und älteren Menschen vertraut ist.

Soweit eine Auswahl der Eindrücke unserer InterviewerInnen aus den Gesprächen mit Menschen, die Betreuungs- und Pflegedienstleistungen beziehen. Erste Ergebnisse der Auswertungen der mit den persönlichen standardisierten Interviews erhobenen quantitativen Daten werden ab September 2018 verfügbar sein.

By: Birgit Trukeschitz & Assma Hajji (WU Vienna University of Economics and Business, Research Institute for Economics of Aging)

The Austrian EXCELC team held two presentations at the 3^rd ATHEA (Austrian Health Economics Association) Conference in Vienna, both on preferences for long-term care outcomes in Austria:

• “Understanding best-worst experiments for calculating quality-of-life preferences in long-term care settings: How they work and what to consider” (“Hinter den Kulissen – Wie funktionieren Best-Worst Experimente für die Berechnung von erwarteten Präferenzen bei Pflegebedürftigkeit und welche Faktoren beeinflussen die Ergebnisse?“)Assma Hajji gave an overview of the method used, the experimental design and methodological issues. The data was collected using a best-worst experiment for calculating preferences for different social care-related quality of life domains using the ASCOT questionnaire.

• “Food over company or vice-versa? Results from a best-worst-analysis of expected quality-of-life preferences in long-term care settings for Austria” (“Gutes Essen oder nette Gesellschaft oder..? – Eine Best-Worst-Analyse zu den erwarteten Präferenzen bei Pflegebedürftigkeit in Österreich”)Birgit Trukeschitz presented preliminary results of the Austrian preference weights based on a general population sample, showing some clear differences in preference between various domains of social care-related quality of life.

Both presentations were well received and led to some insightful discussions on potential implications and next steps in the process.

by Lien Nguyen Researcher at the Centre for Health and Social Economics, National Insitute for Health and Welfare (THL)

Two EXCELC team members presented their works at the iHEA World Congress in Health Economics held in Boston on July 8–11, 2017. Eirini Saloniki presented early findings on differences in preferences elicited from internet and face-to-face surveys, based on data from a best-worst scaling experiment using the English Adult Social Care Outcomes Toolkit service user measure (ASCOT-S). Ismo Linnosmaa gave a talk on our preliminary work exploring whether general good health leads to better social care related quality of life. Both presentations were well received. We are using the feedback from the useful discussions to refine our work.

In addition to the iHEA Congress, the Finnish team submitted two written papers to the Nordic Health Economists’ Study Group Meeting (NHESG) held in Helsinki on August 23–25, 2017. Ismo Linnosmaa submitted the paper on the relationship between general good health and social care related quality of life and Lien Nguyen submitted a paper presenting Finnish population preferences for the ASCOT service user measure. The discussants for these written papers (Professor Jan Aben Olsen, University of Tromsø, and Associate Professor Line Bjørnskov Pedersen, University of Southern Denmark) provided detailed and useful feedback, which has helped to further refine our analysis. Many colleagues showed an interest in our work and are looking forward to us returning to a future study group meeting with our final results.

The iHEA (International Health Economic Association) World Congress in Health Economics is a biennial conference traditionally held in July. The NHESG (Nordic Health Economists’ Study Group) Meeting is an annual conference traditionally held in August, involving researchers mostly from Denmark, Finland, Iceland, Norway and Sweden. The number of researchers, including doctoral students that attend the Nordic conference each year is about 70–100. Written papers must be submitted to the conference organisers beforehand and 40 minutes are allotted to each paper for discussion, led by a discussant. The discussant will first summarise the paper and then give his/her comments on the paper, after which the paper’s authors can reply and the audience can join the discussion. 

By Eirini Saloniki, Research Associate at PSSRU & CHSS at the University of Kent.
It was nine years ago when I was given the opportunity to study for a year abroad at the University of Kent with the Erasmus programme. A fantastic and mind-opening experience – in fact, so fantastic that I returned to Kent not only to study for a PhD but now also working at the University. Who would have thought that I will live the Erasmus ‘dream’ again, this time as a staff member? Yes, the Erasmus programme is available for staff too…! I was eager to apply but I had to find a hosting institution first. It took a Skype meeting and “I suppose we talk about 2-4 weeks visit?” before I found myself applying to spend two weeks as a Visiting Researcher at the National Institute for Health and Welfare (THL) in Helsinki. The application process was fast and within a couple of weeks I was informed that I was successful. I put my excitement aside and focused on organising everything for the visit with the weather not being a concern as I was told that it will be over 10 degrees in May!

Nervous (as it was my first time in Helsinki) but at the same time ready to face the challenge, I spent my first day at the Institute trying to get used to the new routine and working environment, including having lunch at as early as 11:30am. Everyone was very welcome and it really felt like I was a member of the Centre for Health and Social Economics (within THL). The days to follow involved many meetings with health and social economists and late stays at the office (I must have lost track of time as it was so bright in the evening). I had the opportunity to discuss the projects we work on at the Centre for Health Services Studies and the Personal Social Services Research Unit with senior economists, and share best practice. I was also able to share my knowledge of how to control for taste and scale heterogeneity in preference elicitation for social care-related quality of life, and present some preliminary results from the work we are doing in Kent as part of the EXCELC project in an internal seminar. The seminar was well-attended with the audience showing real interest in the project. Importantly, I got to know all about the Finnish health and social care system, and its associated difficulties when it comes to data handling and interpretation.  This is an important consideration for the cross-national element of the project that I am involved in.
It was a great honour to be asked to co-write (with Professor Ismo Linnosmaa) a short piece about “Measuring effectiveness in social care: the present and future for researchers and policy-makers” which is to be featured in the THL newsletter, distributed across Finland.

Before I even realised, my time in Helsinki was over. This experience was invaluable and once again undoubtedly mind-opening. The interaction with senior economists working under a different research environment and the transfer of knowledge as well as discussions for future collaboration were beyond my expectations.

Would I do it again? ABSOLUTELY. Lots to learn in this visit but above all lots to gain. I wholeheartedly recommend the Erasmus programme to other researchers.

By Dr Laurie Batchelder, Research Officer at PSSRU Kent
Greetings from America! Just a quick update on how things went at ISPOR this week (International Society for Pharmacoeconomics and Outcomes Research – 22nd Annual International Meeting). I gave a talk on our preliminary work on the generation of preferences for the ASCOT-C in the English data, which was well received. I fielded a few questions about how we plan to compare these preferences for the ASCOT-C across countries, so I highlighted our plans for the cross-country analysis using a pooled model. Many people were also interested in when we plan to publish the ASCOT-C work, which is great news! In addition, my presentation had been selected as an ISPOR 22nd Annual International Meeting Research Presentation Award finalist!

I also presented our preliminary work on the comparison between face-to-face versus internet data for eliciting SCRQoL preferences using the ASCOT-S in the English dataset, which was also well-received.  Similarly many were very interested in this work and asked questions about the presentation of the Best Worst Scaling task & how this differed between the two modes. There was also a focus on looking at heterogeneity in a very detailed way (which we plan on doing). Again many people were very interested in ASCOT and when we plan to publish this work, which is great news!
In general, I found that there was a lot of discussion talking with others (economists, pharmacists, consultants) after the talk, at the poster, and even in some preference sessions that other methods, such as BWS is the “way forward” and the “next step” with eliciting preferences, given it’s less cognitively burdensome and that it provides more detailed information within a profile compared to TTO,  which I think is really promising.

Full poster and presentation references:

COMPARING INTERNET AND FACE-TO-FACE SURVEYS AS METHODS FOR ELICITING PREFERENCES FOR CARE-RELATED QUALITY OF LIFE: EVIDENCE FROM ENGLAND USING THE ASCOT SERVICE USER MEASURE
Saloniki E¹, Batchelder L¹, Malley J², Burge P³, Lu H³, Forder J^1
1University of Kent, Canterbury, UK, ²London School of Economics and Political Science, London, UK, ³RAND Europe, Cambridge, UK

CARER SOCIAL CARE-RELATED QUALITY OF LIFE OUTCOMES: ESTABLISHING PREFERENCE WEIGHTS FOR THE ADULT SOCIAL CARE OUTCOMES TOOLKIT FOR CARERS Batchelder L1, Saloniki E1, Malley J2, Burge P3, Lu H3, Linnosmaa I4, Trukeschitz B5, Forder J1 1University of Kent, Canterbury, UK, 2London School of Economics and Political Science, London, UK, 3RAND Europe, Cambridge, UK, 4National Institute for Health and Welfare (THL), Helsinki, Finland, 5Wu – Vienna University of Economics and Business, Vienna, Austria

CHESS are hosting a seminar on ‘Preference elicitation for social care-related quality of life: theory and practice’ on May 17 in the NCC buildings in Helsinki.
There will be presentations by members of the EXCELC team, including some early findings from the preference study.  The programme for the seminar can be downloaded here.