PreDemCare
Moving towards Person-Centered Care of People with Dementia – Elicitation of Patient and Physician Preferences for Care
Projec outline
| Project period | 1st of January, 2021 – 31st of December, 2023 |
| Principal investigator | Prof. Dr. Wolfgang Hoffmann, MPH |
| Project coordination | Wiebke Mohr, Anika Rädke, Dr. Bernhard Michalowsky |
| Project funding | External funding |
| Sponsor | Alzheimer Doctoral Scholarship by the Hans & Ilse Breuer-Stiftung |
![[Translate to Englisch:] Logo Breuer Stiftung](/fileadmin/_processed_/8/a/csm_ilse-breuer_e6041c1a16.png "[Translate to Englisch:] Logo Breuer Stiftung")
Background
Currently, ca. 1.7 million People with Dementia (PwD) live in Germany. The number of new cases per year is estimated to be around 244,000. Currently, no curative treatment exists for PwD. To ensure well-being, high Quality-of-Life (QoL) and a life at home for as long as possible, PwD need high-value and person-centered care (PCC). PCC requires that PwD must be involved in healthcare-related decision-making. Especially for PwD early participation is of utmost importance due to the progressive nature of the diseases, leading to declining levels of self-responsibility, self-determination and autonomy.
Recommendations for care in national guidelines are widely based on clinical trials and expert opinions, with a focus to improve clinical parameters. Desired and undesired patient preferences and patient-reported outcomes (PROs) are rarely taken into account. Earlier preference-studies found that expert judgments often not reflect the subjective preferences of the affected patients. To enable provision of person-centered and high value care, the patient’s preferences must be considered.
However, especially among PwD little is known about individual care preferences. Likewise, the preferences of physicians, the providers of evidence-based health care, need to be elicited. If patient and provider preferences differ, provision of value based person-centered care for PwD becomes unlikely. As of today, research that has elicited care preferences among PwD is rare and most research applied qualitative methodology. Studies, which address relevant aspects of outpatient care and support services for PwD based on stated preferences methods are scarce. Quantitative stated preference methods (i.e. Analytic Hierarchy Process) are increasingly applied in healthcare to elicit preferences for a range of healthcare services. Presently, however, data for PwD in Germany are missing. Knowledge about most and least preferred choices is essential and can increase adherence to care as well as improve care, which in turn would improve PwDs’ QoL. When care is not aligned with patient’s preferences and needs, low uptake and poor adherence can waste limited resources.
Project aim
This project aims to elicit PwD’s stated preferences for care, supplemented by information about the correlation with physicians stated preferences for care of PwD. The goal is to enable provision of high-value person-centered care for PwD, and secure a cost-efficient use of scarce healthcare resources.
Project plan
The proposed study follows a mixed-methods design for the development of a quantitative patient preference measurement. This will at first include individual face-to-face interviews with PwD. Based on the results from the qualitative pre-study and pre-tests, the final quantitative survey for preference elicitation will be developed. Through the inclusion of patients in the early stages of measurement development, content validity shall be enhanced. The final survey will be conducted as an assisted, pencil & paper-questionnaire with PwD and physicians. Stated Preferences for care will be elicited by application of an Analytic Hierarchy Process (AHP). The AHP is a multi-criteria decision-making method (MCDA), which is widely used in international studies to determine patient preferences. Compared to other methods of preference elicitation, this method is particularly suitable for cognitively impaired patients, since the determination of patient preferences always takes only two individual aspects of a decision into account resulting in pairwise comparisons, which then are weighed against each other.
Expected results
It is expected that PwD have clear preferences for PCC and can express and name them. The Analytic Hierarchy Process is expected to be a suitable technique for determination of care preferences among PwD. With the help of the AHP method, which supports systematic decision-making that takes multiple criteria into account, it is possible to involve PwD in future care decisions (patient participation). Additionally, analogous to the results of other patient preference studies, divergences between the preferences of PwD and physicians are expected.
Publications
- Mohr W*, Rädke A*, Michalowsky B, Hoffmann W. Elicitation of quantitative, choice-based preferences for Person-Centered Care among People living with Dementia in comparison to physicians' judgements in Germany: study protocol for the mixed-methods PreDemCare-study. BMC Geriatr. 2022;22(1):567. https://doi.org/10.1186/s12877-022-03238-
- Mohr W*, Rädke A, Afi A, Edvardsson D, Mühlichen F, Platen M, Roes M, Michalowsky B, Hoffmann W. Key Intervention Categories to Provide Person-Centered Dementia Care: A Systematic Review of Person-Centered Interventions. J Alzheimers Dis. 2021;84(1):343-366. https://doi.org/10.3233/JAD-210647
- Mohr W*, Rädke A, Afi A, Mühlichen F, Platen M, Michalowsky B, Hoffmann W. Development of a Quantitative Instrument to Elicit Patient Preferences for Person-Centered Dementia Care Stage 1: A Formative Qualitative Study to Identify Patient Relevant Criteria for Experimental Design of an Analytic Hierarchy Process. Int. J. Environ. Res. Public Health 2022;19(13):7629.https://doi.org/10.3390/ijerph19137629
- Mohr, W*.; Rädke, A.; Afi, A.; Mühlichen, F.; Platen, M.; Scharf, A.; Michalowsky, B.; Hoffmann, W. Development of a Quantitative Preference Instrument for Person-Centered Dementia Care—Stage 2: Insights from a Formative Qualitative Study to Design and Pretest a Dementia-Friendly Analytic Hierarchy Process Survey. Int. J. Environ. Res. Public Health 2022;19(14):8554.https://doi.org/10.3390/ijerph19148554
- Mohr W*, Rädke A, Afi A, Weber N, Platen M, Mühlichen F, Scharf A, Michalowsky B, Hoffmann W. Do They Align? Congruence Between Patient Preferences of People Living with Cognitive Impairments and Physicians' Judgements for Person-Centered Care: An Analytic Hierarchy Process Study. J Alzheimers Dis. 2023;91(2):727-741. https://doi.org/10.3233/JAD-220753