HOme-based Longitudinal Investigation of the multidiSciplinary Team Integrated Care (HOLISTIC): protocol of a prospective nationwide cohort study

Jung-Yu Liao, Ping-Jen Chen, Yu-Lin Wu, Ching-Hsia Cheng, Sang-Ju Yu, Chi-Hsien Huang, Chia-Ming Li, Ying-Wei Wang, Kai-Ping Zhang, I-Te Liu, Hiroyuki Umegaki, Jun Hamano, Masanori Mori, Irene Petersen, Elizabeth L Sampson, Chao A Hsiung, Jung-Yu Liao, Ping-Jen Chen, Yu-Lin Wu, Ching-Hsia Cheng, Sang-Ju Yu, Chi-Hsien Huang, Chia-Ming Li, Ying-Wei Wang, Kai-Ping Zhang, I-Te Liu, Hiroyuki Umegaki, Jun Hamano, Masanori Mori, Irene Petersen, Elizabeth L Sampson, Chao A Hsiung

Abstract

Background: The use of home health care (HHC) is increasing worldwide. This may have an impact not only on patients and their caregivers' health but on care resource utilization and costs. We lack information on the impact of HHC on the broader dimensions of health status and care resource utilization. More understanding of the longitudinal HHC impact on HHC patients and caregivers is also needed. Moreover, we know little about the synergy between HHC and social care. Therefore, the present study aims to observe longitudinal changes in health, care resource utilization and costs and caregiving burden among HHC recipients and their caregivers in Taiwan.

Methods: A prospective cohort study "Home-based Longitudinal Investigation of the Multidisciplinary Team Integrated Care (HOLISTIC)" will be conducted and 600 eligible patient-caregiver dyads will be recruited and followed with comprehensive quantitative assessments during six home investigations over two years. The measurements include physical function, psychological health, cognitive function, wellbeing, shared decision making and advance care planning, palliative care and quality of dying, caregiving burden, continuity and coordination of care, care resource utilization, and costs.

Discussion: The HOLISTIC study offers the opportunity to comprehensively understand longitudinal changes in health conditions, care resource utilization and costs and caregiving burden among HHC patients and caregivers. It will provide new insights for clinical practitioners and policymakers.

Trial registration: ClinicalTrials.gov Identifier is NCT04250103 which has been registered on 31st January 2020.

Keywords: Caregiving burden; Cohort study; Geriatric assessment; Health status; Home health care (HHC); Long-term care.

Conflict of interest statement

The authors declare that they have no conflict of interest.

Figures

Fig. 1
Fig. 1
The measurement framework in the study

References

    1. World Health Organization (WHO). The growing need for home health care for the elderly: home health care for the elderly as an integral part of primary health care services. World Health Organization. Regional Office for the Eastern Mediterranean. 2015. . Accessed 15 Jan 2020.
    1. Thomé B, Dykes AK, Hallberg IR. Home care with regard to definition, care recipients, content and outcome: systematic literature review. J Clin Nurs. 2003;12(6):860–872. doi: 10.1046/j.1365-2702.2003.00803.x.
    1. Harris-Kojetin L, Sengupta M, Lendon JP, Rome V, Valverde R, CC: Long-term care providers and services users in the United States, 2015–2016. In: National Center for Health Statistics Vital Health Stat 3(43). Maryland, USA; 2019.
    1. Arias-Casais N, López-Fidalgo J, Garralda E, Pons JJ, Rhee JY, Lukas R, et al. Trends analysis of specialized palliative care services in 51 countries of the WHO European region in the last 14 years. Palliat Med. 2020;34(8):1044–1056. doi: 10.1177/0269216320931341.
    1. Genet N, Kroneman M, Boerma WG. Explaining governmental involvement in home care across Europe: an international comparative study. Health Policy. 2013;110(1):84–93. doi: 10.1016/j.healthpol.2013.01.009.
    1. Genet N, Boerma WG, Kringos DS, Bouman A, Francke AL, Fagerström C, et al. Home care in Europe: a systematic literature review. BMC Health Serv Res. 2011;11(1):207. doi: 10.1186/1472-6963-11-207.
    1. Wang Y, Leifheit-Limson EC, Fine J, Pandolfi MM, Gao Y, Liu F, et al. National trends and geographic variation in availability of home health care: 2002–2015. J Am Geriatr Soc. 2017;65(7):1434–1440. doi: 10.1111/jgs.14811.
    1. Shepperd S, Iliffe S. Hospital at home versus in-patient hospital care. Cochrane Database Syst Rev. 2005;3:CD000356.
    1. Caplan GA, Sulaiman NS, Mangin DA, Aimonino Ricauda N, Wilson AD, Barclay L. A meta-analysis of “hospital in the home”. Med J Aust. 2012;197(9):512–519. doi: 10.5694/mja12.10480.
    1. Eric De Jonge K, Jamshed N, Gilden D, Kubisiak J, Bruce SR, Taler G. Effects of home-based primary care on Medicare costs in high-risk elders. J Am Geriatr Soc. 2014;62(10):1825–1831. doi: 10.1111/jgs.12974.
    1. Edes T, Kinosian B, Vuckovic NH, Olivia Nichols L, Mary Becker M, Hossain M. Better access, quality, and cost for clinically complex veterans with home-based primary care. J Am Geriatr Soc. 2014;62(10):1954–1961. doi: 10.1111/jgs.13030.
    1. Langhorne P, Baylan S, Trialists ESD. Early supported discharge services for people with acute stroke. Cochrane Database Syst Rev. 2017;7:CD000443.
    1. Huang CH, Umegaki H, Kamitani H, Asai A, Kanda S, Maeda K, et al. Change in quality of life and potentially associated factors in patients receiving home-based primary care: a prospective cohort study. BMC Geriatr. 2019;19(1):21. doi: 10.1186/s12877-019-1040-3.
    1. Jones CD, Ginde AA, Burke RE, Wald HL, Masoudi FA, Boxer RS. Increasing home healthcare referrals upon discharge from US hospitals: 2001–2012. J Am Geriatr Soc. 2015;63(6):1265–1266. doi: 10.1111/jgs.13467.
    1. Li CM, Li CY, Chen PC, Chang HH. Factors associated with one-year mortality of patients receiving home healthcare service in a regional hospital in northern Taiwan. Taiwan J Fam Med. 2020;30(2):68–77.
    1. Cross SH, Kaufman BG, Taylor DH, Jr, Kamal AH, Warraich HJ. Trends and factors associated with place of death for individuals with dementia in the United States. J Am Geriatr Soc. 2020;68(2):250–255. doi: 10.1111/jgs.16200.
    1. Ritchie CS, Leff B. Population health and tailored medical care in the home: the roles of home-based primary care and home-based palliative care. J Pain Symptom Manag. 2018;55(3):1041–1046. doi: 10.1016/j.jpainsymman.2017.10.003.
    1. National Health Insurance Administration . 2016–2017 handbook of Taiwan's National Health Insurance. Taipei: National Health Insurance Administration; 2016.
    1. Yeh MJ. Long-term care system in Taiwan: the 2017 major reform and its challenges. Ageing Soc. 2020;40(6):1334–1351. doi: 10.1017/S0144686X18001745.
    1. Pituch KA, Stevens JP. Applied multivariate statistics for the social sciences: analyses with SAS and IBM’s SPSS. 6. New York: Routledge; 2016.
    1. Badia JG, Santos AB, Segura JCC, Terén CA, González LC, Ramírez EL, et al. Predictors of mortality among elderly dependent home care patients. BMC Health Serv Res. 2013;13(1):316. doi: 10.1186/1472-6963-13-316.
    1. Liu CY, Hung YT, Chuang YL, Chen YJ, Weng WS, Liu JS. Incorporating development stratification of Taiwan townships into sampling design of large scale health interview survey. J Health Manag. 2006;4(1):1–22.
    1. Liu IT, Chang KP, Chao AH, Yu SJ. Current home health care models in Taiwan. World Hospital At Home Congress: 5–6 April 2019; Madrid, Spain. 2019.
    1. Olson K. An examination of questionnaire evaluation by expert reviewers. Field Methods. 2010;22(4):295–318. doi: 10.1177/1525822X10379795.
    1. World Health Organization (WHO). Process of translation and adaptation of instruments. 2016. . Accessed 30 June 2019.
    1. Mahoney FI, Barthel DW. Functional evaluation: the Barthel index: a simple index of independence useful in scoring improvement in the rehabilitation of the chronically ill. Md State Med J. 1965;14:61–65.
    1. Rockwood K, Song X, MacKnight C, Bergman H, Hogan DB, McDowell I, et al. A global clinical measure of fitness and frailty in elderly people. Can Med Assoc J. 2005;173(5):489–495. doi: 10.1503/cmaj.050051.
    1. Kaiser MJ, Bauer JM, Ramsch C, Uter W, Guigoz Y, Cederholm T, et al. Validation of the mini nutritional assessment short-form (MNA®-SF): a practical tool for identification of nutritional status. J Nutr Health Aging. 2009;13(9):782. doi: 10.1007/s12603-009-0214-7.
    1. Crary MA, Mann GDC, Groher ME. Initial psychometric assessment of a functional oral intake scale for dysphagia in stroke patients. Arch Phys Med Rehabil. 2005;86(8):1516–1520. doi: 10.1016/j.apmr.2004.11.049.
    1. Bergstrom N. The Braden scale for predicting pressure sore risk. Nurs Res. 1987;36(4):205–210. doi: 10.1097/00006199-198707000-00002.
    1. Hoyl MT, Alessi CA, Harker JO, Josephson KR, Pietruszka FM, Koelfgen M, et al. Development and testing of a five-item version of the geriatric depression scale. J Am Geriatr Soc. 1999;47(7):873–878. doi: 10.1111/j.1532-5415.1999.tb03848.x.
    1. Cummings JL, Mega M, Gray K, Rosenberg-Thompson S, Carusi DA, Gornbein J. The neuropsychiatric inventory: comprehensive assessment of psychopathology in dementia. Neurology. 1994;44(12):2308. doi: 10.1212/WNL.44.12.2308.
    1. Tsai PH, Liu JL, Lin KN, Chang CC, Pai MC, Wang WF, et al. Development and validation of a dementia screening tool for primary care in Taiwan: brain health test. PLoS One. 2018;13(4):e0196214. doi: 10.1371/journal.pone.0196214.
    1. Sclan SG, Reisberg B. Functional assessment staging (FAST) in Alzheimer's disease: reliability, validity, and ordinality. Int Psychogeriatr. 1992;4(3):55–69. doi: 10.1017/S1041610292001157.
    1. Logsdon RG, Gibbons LE, McCurry SM, Teri L. Assessing quality of life in older adults with cognitive impairment. Psychosom Med. 2002;64(3):510–519. doi: 10.1097/00006842-200205000-00016.
    1. Logsdon RG, Gibbons LE, McCurry SM, Teri L. Quality of life in Alzheimer's disease: patient and caregiver reports. J Ment Health Aging. 1999;5:21–32.
    1. Heun R, Bonsignore M, Barkow K, Jessen F. Validity of the five-item WHO well-being index (WHO-5) in an elderly population. Eur Arch Psychiatry Clin Neurosci. 2001;251(2):27–31. doi: 10.1007/BF03035123.
    1. Herdman M, Gudex C, Lloyd A, Janssen M, Kind P, Parkin D, et al. Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L) Qual Life Res. 2011;20(10):1727–1736. doi: 10.1007/s11136-011-9903-x.
    1. Kamitani H, Umegaki H, Okamoto K, Kanda S, Asai A, Maeda K, et al. Development and validation of a new quality of life scale for patients receiving home-based medical care: the observational study of Nagoya elderly with home medical care. Geriatr Gerontol Int. 2017;17(3):440–448. doi: 10.1111/ggi.12735.
    1. Arora NK, Weaver KE, Clayman ML, Oakley-Girvan I, Potosky AL. Physicians’ decision-making style and psychosocial outcomes among cancer survivors. Patient Educ Couns. 2009;77(3):404–412. doi: 10.1016/j.pec.2009.10.004.
    1. Sudore RL, Heyland DK, Barnes DE, Howard M, Fassbender K, Robinson CA, et al. Measuring advance care planning: optimizing the advance care planning engagement survey. J Pain Symptom Manag. 2017;53(4):669–681. doi: 10.1016/j.jpainsymman.2016.10.367.
    1. Schildmann EK, Groeneveld EI, Denzel J, Brown A, Bernhardt F, Bailey K, et al. Discovering the hidden benefits of cognitive interviewing in two languages: the first phase of a validation study of the integrated palliative care outcome scale. Palliat Med. 2016;30(6):599–610. doi: 10.1177/0269216315608348.
    1. Highet G, Crawford D, Murray SA, Boyd K. Development and evaluation of the supportive and palliative care indicators tool (SPICT): a mixed-methods study. BMJ Support Palliat Care. 2014;4(3):285–290. doi: 10.1136/bmjspcare-2013-000488.
    1. Munn JC, Zimmerman S, Hanson LC, Williams CS, Sloane PD, Clipp EC, et al. Measuring the quality of dying in long-term care. J Am Geriatr Soc. 2007;55(9):1371–1379. doi: 10.1111/j.1532-5415.2007.01293.x.
    1. Kenny DA, Kashy DA, Cook WL. The analysis of dyadic data. New York: Guilford Press; 2006.
    1. Preacher KJ, Zyphur MJ, Zhang Z. A general multilevel SEM framework for assessing multilevel mediation. Psychol Methods. 2010;15(3):209–233. doi: 10.1037/a0020141.

Source: PubMed

Спонсоры и соавторы

Заболевания

Медикаментозные вмешательства

Подписаться