Valuing informal carers’ quality of life using best-worst scaling—Finnish preference weights for the Adult Social Care Outcomes Toolkit for carers (ASCOT-Carer)

OECD: Informal carers: In: ealth at a Glance 2017: OECD indicators. OECD Publishing (2017) Greve, B. (Ed.): Long-term care for the elderly in Europe: development and prospects (1st ed.). Routledge. (2016). https://doi.org/10.4324/9781315592947 Barbieri, D., Ghibelli, P. (eds.): Formal versus informal long-term care: economic and social impacts. SPRINT Working Paper D4.4. SPRINT, Brussels (2019). http://sprint-project.eu/wp-content/uploads/2018/09/SPRINT_D4.4_Formal_vs_Informal-LTC_Economic_Social_Impacts.pdf. Accessed 29 June 2019 Savage, S., Bailey, S.: The impact of caring on caregivers’ mental health: a review of the literature. Aust. Health Rev. 27, 111–117 (2004). https://doi.org/10.1071/ah042710111 Colombo, F., et al.: Help Wanted? OECD Publishing (2011). https://doi.org/10.1787/9789264097759-en. Accessed 10 Jan 2021 Bauer, J.M., Sousa-Poza, A.: Impacts of informal caregiving on caregiver employment, health, and family. J. Popul. Age. 8, 113–145 (2015). https://doi.org/10.1007/s12062-015-9116-0 Kumagai, N.: Distinct impacts of high intensity caregiving on caregivers’ mental health and continuation of caregiving. Health Econ. Rev. 7, 15–15 (2017). https://doi.org/10.1186/s13561-017-0151-9 van den Berg, B., Fiebig, D.G., Hall, J.: Well-being losses due to care-giving. J. Health Econ. 35, 123–131 (2014). https://doi.org/10.1016/j.jhealeco.2014.01.008 Do, Y.K., Norton, E.C., Stearns, S.C., Van Houtven, C.H.: Informal care and caregiver’s health. Health Econ. 24, 224–237 (2015). https://doi.org/10.1002/hec.3012 Hudson, P.L., Trauer, T., Graham, S., Grande, G., Ewing, G., Payne, S., Stajduhar, K.I., Thomas, K.: A systematic review of instruments related to family caregivers of palliative care patients. Palliat. Med. 24, 656–668 (2010). https://doi.org/10.1177/0269216310373167 Harvey, K., Catty, J., Langman, A., Winfield, H., Clement, S., Burns, E., White, S., Burns, T.: A review of instruments developed to measure outcomes for carers of people with mental health problems. Acta Psychiatr Scand 117, 164–176 (2008). https://doi.org/10.1111/j.1600-0447.2007.01148.x Zarit, S.H., Reever, K.E., Bach-Peterson, J.: Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist 20, 649–655 (1980). https://doi.org/10.1093/geront/20.6.649 Radloff, L.S.: The CES-D scale: a self-report depression scale for research in the general population. Appl. Psychol. Meas. 1, 385–401 (1977). https://doi.org/10.1177/014662167700100306 George, L.K., Gwyther, L.P.: Caregiver well-being: a multidimensional examination of family caregivers of demented adults. Gerontologist 26, 253–259 (1986). https://doi.org/10.1093/geront/26.3.253 Goodrich, K., Kaambwa, B., Al-Janabi, H.: The inclusion of informal care in applied economic evaluation: a review. Value Health 15, 975–981 (2012). https://doi.org/10.1016/j.jval.2012.05.009 Netten, A., Burge, P., Malley, J., Potoglou, D., Towers, A.-M., Brazier, J., Flynn, T., Forder, J., Wall, B.: Outcomes of social care for adults: developing a preference-weighted measure. Health Technol. Assess. 16, 1–166 (2012). https://doi.org/10.3310/hta16160 Malley, J., Fox, D., Netten, A.: Developing a carers' experience performance indicator. PSSRU Discussion Paper 2734. University of Kent, Kent (2010). https://kar.kent.ac.uk/77660/2/dp2734.pdf. Accessed 22 June 2019 Rand, S.E., Malley, J.N., Netten, A.P., Forder, J.E.: Factor structure and construct validity of the adult social care outcomes toolkit for carers (ASCOT-Carer). Qual. Life Res. 24, 2601–2614 (2015). https://doi.org/10.1007/s11136-015-1011-x Batchelder, L., Malley, J., Burge, P., Lu, H., Saloniki, E.-C., Linnosmaa, I., Trukeschitz, B., Forder, J.E.: Carer social care-related quality of life outcomes: estimating english preference weights for the adult social care outcomes toolkit for carers (ASCOT-Carer). Value Health 22, 1427–1440 (2019). https://doi.org/10.1016/j.jval.2019.07.014 Coons, S.J., Rao, S., Keininger, D.L., Hays, R.D.: A comparative review of generic quality-of-life instruments. Pharmacoeconomics 17, 13–35 (2000). https://doi.org/10.2165/00019053-200017010-00002 Drummond, M.F., Sculpher, M.J., Claxton, K., Stoddart, G.L., Torrance, G.W.: Methods for the economic evaluation of health care programmes, 4th edn. Oxford University Press (2015) Badia, X., Roset, M., Herdman, M., Kind, P.: A comparison of United Kingdom and Spanish general population time trade-off values for EQ-5D health states. Med. Decis. Making 21, 7–16 (2001). https://doi.org/10.1177/0272989x0102100102 Johnson, J.A., Luo, N., Shaw, J.W., Kind, P., Coons, S.J.: Valuations of EQ-5D health states: are the United States and United Kingdom different? Med. Care 43, 221–228 (2005). https://doi.org/10.1097/00005650-200503000-00004 Hunt, S.M., Alonso, J., Bucquet, D., Niero, M., Wiklund, I., McKenna, S.: Cross-cultural adaptation of health measures. Health Policy 19, 33–44 (1991). https://doi.org/10.1016/0168-8510(91)90072-6 Guillemin, F., Bombardier, C., Beaton, D.: Cross-cultural adaptation of health-related quality of life measures: literature review and proposed guidelines. J. Clin. Epidemiol. 46, 1417–1432 (1993). https://doi.org/10.1016/0895-4356(93)90142-n Kaplan, R.M., Feeny, D., Revicki, D.A.: Methods for assessing relative importance in preference based outcome measures. Qual. Life Res. 2, 467–475 (1993). https://doi.org/10.1007/bf00422221 Hajji, A., Trukeschitz, B., Malley, J., Batchelder, L., Saloniki, E., Linnosmaa, I., Lu, H.: Population-based preference weights for the adult social outcomes toolkit (ASCOT) for service users for Austria: findings from a best-worst experiment. Soc. Sci. Med. 250, 112792 (2020). https://doi.org/10.1016/j.socscimed.2020.112792 Shiroiwa, T., Moriyama, Y., Nakamura-Thomas, H., Morikawa, M., Fukuda, T., Batchelder, L., Saloniki, E.-C., Malley, J.: Development of Japanese utility weights for the Adult Social Care Outcomes Toolkit (ASCOT) SCT4. Qual. Life Res. 29, 253–263 (2020). https://doi.org/10.1007/s11136-019-02287-6 Nguyen, L., Jokimäki, H., Linnosmaa, I., Saloniki, E.-C., Batchelder, L., Malley, J., Lu, H., Burge, P., Trukeschitz, B., Forder, J.: Do you prefer safety to social participation? Finnish population-based preference weights for the adult social care outcomes toolkit (ASCOT) for service users. MDM Policy Practice (2021). https://doi.org/10.1177/23814683211027902 Trukeschitz, B., Hajji, A., Batchelder, L., Saloniki, E., Linnosmaa, I., Malley, J.: What’s important when caring for a loved one? Population-based preference weights for the adult social care outcomes toolkit for informal carers (ASCOT-Carer) for Austria. Qual. Life Res. (2021). https://doi.org/10.1007/s11136-021-02775-8 Linnosmaa, I., Nguyen, L., Jokimäki, H.: The EXCELC project in Finland: the main descriptive findings from surveys using the adult social care outcomes toolkit (ASCOT). Discussion paper 29/2020 Finnish Institute for Health and Welfare (THL) (2020). https://www.julkari.fi/handle/10024/140416. Accessed 10 Jan 2021 Finn, A., Louviere, J.J.: Determining the appropriate response to evidence of public concern: the case of food safety. J. Pub. Policy Mark. 11, 12–25 (1992). https://doi.org/10.2165/00019053-200017010 Thurstone, L.L.: A law of comparative judgement. Psychol. Rev. 101, 266–270 (1994). https://doi.org/10.1037/0033-295X.101.2.266 Carlsson, F., Mørkbak, M.R., Olsen, S.B.: The first time is the hardest: a test of ordering effects in choice experiments. J. Choice Model. 5, 19–37 (2012). https://doi.org/10.1016/S1755-5345(13)70051-4 Day, B., Bateman, I.J., Carson, R.T., Dupont, D., Louviere, J.J., Morimoto, S., Scarpa, R., Wang, P.: Ordering effects and choice set awareness in repeat-response stated preference studies. J. Environ. Econ. Manag. 63, 73–91 (2012). https://doi.org/10.1016/j.jeem.2011.09.001 Savage, S.J., Waldman, D.M.: Learning and fatigue during choice experiments: a comparison of online and mail survey modes. J. Appl. Econ. 23, 351–371 (2008). https://doi.org/10.1002/jae.984 Helter, T.M., Coast, J., Łaszewska, A., Stamm, T., Simon, J.: Capability instruments in economic evaluations of health-related interventions: a comparative review of the literature. Qual. Life Res. 29, 1433–1464 (2020). https://doi.org/10.1007/s11136-019-02393-5 Flynn, T.N.: Valuing citizen and patient preferences in health: recent developments in three types of best–worst scaling. Expert Rev. Pharmacoecon. Outcomes Res. 10, 259–267 (2010). https://doi.org/10.1586/erp.10.29 Potoglou, D., Burge, P., Flynn, T., Netten, A., Malley, J., Forder, J., Brazier, J.E.: Best–worst scaling vs discrete choice experiments: an empirical comparison using social care data. Soc. Sci. Med. 72, 1717–1727 (2011). https://doi.org/10.1016/j.socscimed.2011.03.027 Louviere, J., Flynn, T., Marley, A.A.J.: Best-worst scaling: theory, methods and applications. Cambridge University Press (2015) Hess, S., Train, K.: Correlation and scale in mixed logit models. J. Choice Model. 23, 1–8 (2017). https://doi.org/10.1016/j.jocm.2017.03.001 Flynn, T.N., Huynh, E., Peters, T.J., Al-Janabi, H., Clemens, S., Moody, A., Coast, J.: Scoring the ICECAP-A capability instrument. Estimation of a UK general population tariff. Health Econ. 24, 258–269 (2015). https://doi.org/10.1002/hec.3014 Flynn, T.N., Marley, A.A.J.: Best-worst scaling: theory and methods. In: Hess, S., Daly, A. (eds.) Handbook of choice modelling, pp. 1–342. Edward Elgar Publishing Limited (2014) Johnson, F.R., Lancsar, E., Marshall, D., Kilambi, V., Mühlbacher, A., Regier, D.A., Bresnahan, B.W., Kanninen, B., Bridges, J.F.: Constructing experimental designs for discrete-choice experiments: report of the ISPOR conjoint analysis experimental design good research practices task force. Value Health 16, 3–13 (2013). https://doi.org/10.1016/j.jval.2012.08.2223 Campbell, D., Boeri, M., Doherty, E., Hutchinson, W.G.: Learning, fatigue and preference formation in discrete choice experiments. J. Econ. Behav. Organ. 119, 345–363 (2015). https://doi.org/10.1016/j.jebo.2015.08.018 McFadden, D.: Conditional logit analysis of qualitative choice behavior. In: Zarembka, P. (ed.) Frontiers in econometrics, pp. 105–142. Academic Press (1974) Louviere, J., Street, D., Carson, R., Ainslie, A., Deshazo, J.R., Cameron, T., Hensher, D., Kohn, R., Marley, T.: Dissecting the random component of utility. Mark. Lett. 13, 177–193 (2002). https://doi.org/10.1023/a:1020258402210 Fiebig, D.G., Keane, M.P., Louviere, J., Wasi, N.: The generalized multinomial logit model: accounting for scale and coefficient heterogeneity. Market. Sci. 29, 393–421 (2010). https://doi.org/10.1287/mksc.1090.0508 Bierlaire, M.: BIOGEME: a free package for the estimation of discrete choice models. Proceedings of the 3rd Swiss transportation research conference. Paper presented at the 3rd swiss transportation research conference, Ascona, Switzerland (2003). http://biogeme.epfl.ch. Accessed 9 Sept 2017 ALOGIT: ALOGIT Software & Analysis Ltd. ALOGIT version 4.2. 2017. http://www.alogit.com/. Accessed 14 Sept 2017 Train, K.E.: Discrete choice methods with simulation. Second edition. Cambridge University Press (2009). https://eml.berkeley.edu/books/choice2.html. Accessed 31 July 2018 Hess, S., Hensher, D., Daly, A.J.: Not bored yet - revisiting respondent fatigue in stated choice experiments. Transp. Res. Part A Policy Pract. 46, 626–644 (2012). https://doi.org/10.1016/j.tra.2011.11.008 DeBell, M., Krosnick, J.A.: Computing weights for American national election study survey data. ANES Technical Report Series, no. nes012427. American National Election Studies, Ann Arbor, MI, Palo Alto, CA (2009). https://electionstudies.org/wp-content/uploads/2018/04/nes012427.pdf. Accessed 11 Feb 2021 Burge, P., Potoglou, D., Kim, C., Hess, S.: How do the public value different outcomes of social care? Estimation of preference weights for ASCOT. Santa Monica, CA: RAND Corporation, 2010. RAND Europe (2010). https://www.rand.org/pubs/working_papers/WR744.html. Accessed 1 Mar 2018 Huynh, E., Coast, J., Rose, J., Kinghorn, P., Flynn, T.: Values for the ICECAP-supportive care measure (ICECAP-SCM) for use in economic evaluation at end of life. Soc. Sci. Med. 189, 114–128 (2017). https://doi.org/10.1016/j.socscimed.2017.07.012 Coast, J., Flynn, T.N., Natarajan, L., Sproston, K., Lewis, J., Louviere, J.J., Peters, T.J.: Valuing the ICECAP capability index for older people. Soc. Sci. Med. 67, 874–882 (2008). https://doi.org/10.1016/j.socscimed.2008.05.015 Hensher, D.A., Rose, J.M., Greene, W.H.: Applied choice analysis: a primer. Cambridge University Press (2005) Campbell, D., Erdem, S.: Position bias in best-worst scaling surveys: a case study on trust in institutions. Am. J. Agri. Econ. 97, 526–545 (2015). https://doi.org/10.1093/ajae/aau112 Flynn, T.N., Louviere, J.J., Peters, T.J., Coast, J.: Using discrete choice experiments to understand preferences for quality of life Variance-scale Heterogeneity matters. Soc. Sci. Med. 70, 1957–1965 (2010). https://doi.org/10.1016/j.socscimed.2010.03.008 Salthouse, T.A., Kausler, D.H., Saults, J.S.: Age, self-assessed health status, and cognition. J. Gerontol. 45, P156–P160 (1990). https://doi.org/10.1093/geronj/45.4.p156 Mühlbacher, A.C., Kaczynski, A., Zweifel, P., Johnson, F.R.: Experimental measurement of preferences in health and healthcare using best-worst scaling: an overview. Health Econ. Rev. 6, 2–2 (2016). https://doi.org/10.1186/s13561-015-0079-x Czajkowski, M., Giergiczny, M., Greene, W.H.: Learning and fatigue effects revisited: Investigating the effects of accounting for unobservable preference and scale heterogeneity. Land Econ. 90, 324–351 (2014). https://doi.org/10.3368/le.90.2.324 Saloniki, E.-C., Malley, J., Burge, P., Lu, H., Batchelder, L., Linnosmaa, I., Trukeschitz, B., Forder, J.: Comparing internet and face-to-face surveys as methods for eliciting preferences for social care-related quality of life: evidence from England using the ASCOT service user measure. Qual. Life Res. (2019). https://doi.org/10.1007/s11136-019-02172-2 Makai, P., Brouwer, W.B., Koopmanschap, M.A., Stolk, E.A., Nieboer, A.P.: Quality of life instruments for economic evaluations in health and social care for older people: a systematic review. Soc. Sci. Med. 102, 83–93 (2014). https://doi.org/10.1016/j.socscimed.2013.11.050 Bulamu, N.B., Kaambwa, B., Ratcliffe, J.: A systematic review of instruments for measuring outcomes in economic evaluation within aged care. Health Qual. Life Outcomes 13, 179 (2015). https://doi.org/10.1186/s12955-015-0372-8 Kjær, T., Bech, M., Gyrd-Hansen, D., Hart-Hansen, K.: Ordering effect and price sensitivity in discrete choice experiments: need we worry? Health Econ. 15, 1217–1228 (2006). https://doi.org/10.1002/hec.1117 Murto, J., Kaikkonen, R., Pentala-Nikulainen, O., Koskela, T., Virtala, E., Härkänen, T., Koskenniemi, T., Jussmäki, T., Vartiainen, E., Koskinen, S.: Aikuisten terveys-, hyvinvointi- ja palvelututkimus ATH:n perustulokset 2010–2016. Finnish Institute for Health and Welfare THL, Helsinki (2018). Verkkojulkaisu: thl.fi/ath. Accessed 21 Jan 2020 Statistics from Statistics Finland, Official Statistics of Finland (OSF), Helsinki: Dwellings and housing conditions 2015: dwellings and housing conditions [e-publication] (2015b). www.stat.fi/til/asas/tau_en.html. Accessed 23 Jan 2017 Educational structure of population 2015: Educational structure of population [e-publication]. Table: population aged 15 or over by level of education, municipality, gender, and age 1970–2015 (2015a). www.stat.fi/til/vkour/tau_en.html. Accessed 11 May 2018 Employment statistics 2016: Employment [e-publication]. Table: population by main type of activity, sex, yearly age groups and year 1987–2016 (2016b). www.stat.fi/til/tyokay/tau_en.html. Accessed 11 May 2018 Population Statistics 2016: Population structure [e-publication]. Table: population according to age (1-year), sex, marital status, and language by area 1990–2016 (2016a). www.tilastokeskus.fi/til/vaerak/tau.html. Accessed 27 Apr 2017 Population Statistics 2016: Population structure [e-publication]. Table: Population by religious community, age, and sex in 2000 to 2016 (2016c). www.tilastokeskus.fi/til/vaerak/tau.html. Accessed 27 Apr 2017