Talking the same language on patient empowerment: Development and content validation of a taxonomy of selfmanagement interventions for chronic conditions

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Longevity gains and postponed informal care with self-management interventions?

A societal perspective includes the impact of a disease on informal care, that is care given by people other than healthcare professionals. Informal care includes, but is not limited to, care and support given by family and friends. Especially chronically ill older adults need day-to-day help with personal care, such as dressing and eating, practical household help, such as shopping, and many other activities essential to their health and quality of life.

We are familiar with the costs associated with a doctor, a nurse, or other healthcare workers providing professional care to older adults.

However, the costs when older adults are cared for by family members or friends often receive less attention. While the provision of informal care is a burden on the informal caregiver in terms of time (that the caregiver could otherwise use to perform paid work or spend on leisure), these costs are often ignored in economic evaluations.

In part, that’s because information on informal care use is often sparse if not missing at all, thus in order to predict these costs we need to study its relationship with known predictors of health care use.

Different studies evaluated the relationship between proximity to death and health care expenditures. These studies found that proximity to death is a much better predictor of health care expenditures than age.[1] This is supported by the finding that health losses are more pronounced in the last years of life [2], and similarly severe disability is centered in the final phase of life. [3] Within COMPAR-EU, we therefore aimed to predict informal care use based on age and proximity to death.

We used data from the Survey of Health, Ageing and Retirement in Europe (SHARE) release 7.0.0. [4] SHARE is a longitudinal, multidisciplinary, and cross-national survey, which aims to collect data on health, socio-economic status along with social and family networks of non-institutionalized people aged over 50 in 21 European countries and Israel. With these data we predicted informal care use based on age, gender and proximity to death. Our findings show that the weekly use of informal care increased with proximity to death from 19% to 53% among those who died in the same year of the interview. Also, the number of hours of informal care per day increased from 2.0 to 4.7 in the last year of life.

In an aging population, where interventions potentially prolong life, severe disability is rather postponed to the last years of life. Therefore, proximity to death could be considered as a proxy of disability, which is an important determinant of informal care use. The overall aim of COMPAR-EU is to identify, compare and rank the most cost-effective self-management interventions for adults suffering from type 2 diabetes, obesity, chronic obstructive pulmonary disease, and heart failure. By using proximity to death to predict informal care use, we are able to take into account the impact that self-management interventions might have on the costs of informal care when they accomplish to prolong life.

Photo_Irene Santi

Irene Santi

Irene Santi, PhD is senior researcher at the institute for Medical Technology Assessment (iMTA) at Erasmus University. She holds an MS in Biology from the University of Genoa, Italy, a post-graduate specialization in Medical Statistics and Epidemiology from the University of Pavia, Italy and a PhD (Dr. Sc. Hum.) from the Medical Faculty of Heidelberg, Germany.

de_Groot_ Saskia

Saskia de Groot

Saskia de Groot is a Medior Researcher at iMTA. She holds a Master´s degree in Health Economics, Policy & Law from the Erasmus University Rotterdam, a Master´s degree in Clinical Epidemiology from the Netherlands Institute for Health Science of the Erasmus Medical Center and a PhD in Health Economics from the Erasmus University Rotterdam.


  1. Seshamani M, Gray A. The impact of ageing on expenditures in the National Health Service.
  2. Gheorghe M, Picavet S, Verschuren M, et al. Health losses at the end of life: a Bayesian mixed beta regression approach. J R Stat Soc Ser A (Statistics Soc 2017;180:723–49. doi:10.1111/RSSA.12230
  3. De Meijer C, Koopmanschap M, d’Uva TB, et al. Determinants of long-term care spending: Age, time to death or disability? J Health Econ 2011;30:425–38. doi:10.1016/J.JHEALECO.2010.12.010
  4. Börsch-Supan A, Team on behalf of the SCC, Brandt M, et al. Data Resource Profile: The Survey of Health, Ageing and Retirement in Europe (SHARE). Int J Epidemiol 2013;42:992–1001. doi:10.1093/IJE/DYT088

Self-management Europe Alert #1

Welcome to the first issue of the Alert of Self-management Europe. These Alerts aim to contribute to greater awareness and accessibility of self-management support in patients, especially in those living with a chronic condition. The Alerts address healthcare professionals, managers and other stakeholders looking for practical recommendations to implement practices that enhance self-management and patient empowerment.

Read the full alert here.

This is a publication by Self-management Europe. The European Research and Innovation Centre on patient empowerment and self-management, called “Self-management Europe”, is a not-for-profit partnership of organisations working on patient empowerment and self-management with a special focus on chronic diseases. Find out more  here.