Identifying, engaging, and supporting care partners in primary care settings: a portal-based intervention

DesRoches et al. BMC Primary Care (2025) 26:356 https://doi.org/10.1186/s12875-025-03059-7 BMC Primary Care Open Access RESEARCH Identifying, engaging, and supporting care partners in primary care settings: a portalbased intervention Catherine M. DesRoches1*, Deborah Wachenheim2, Jessica Ameling3, Aysel Cibildak4, Nancy Cibotti5, Zhiyong Dong2, Alexandra Drane4, James Henderson3, Isabel Hurwitz2, Jennifer Meddings3,6,7, Jody Naimark8, Kimberly O’Donnell3,6, Christine Winger9, Sarah Stephens Winnay4, Jordan Young10 and Jennifer L. Wolff11 Abstract Importance Millions of Americans provide health and function-related help to family (broadly defined). These “care partners” provide critical support; however, they are rarely identified or supported in care delivery. Objectives Conduct a multi-site evaluation of a portal-based intervention designed to identify, engage, and support care partners in primary care settings. Design Three days before a visit, patients were sent a portal notification inviting them to complete a questionnaire. Participants reporting caregiving responsibilities were provided a link to the Caregiver Intensity Index™ (CII), an assessment of caregiving intensity with local resources. In-clinic materials were available with information about accessing the CII. Setting Five primary care practices at two health care organizations. Participants All patients age 18 + years of age at organization 1 and 21 + at organization 2. Main outcomes Intervention reach: proportion and characteristics of patients completing the pre-visit survey. Intervention effectiveness: proportion of patients completing the CII. Results The demonstration was implemented at 5 primary care practices between September 30, 2022, and May 31, 2024. At Organization 1, 19,407 patients received the pre-visit portal based questionnaire and 8,905 completed it at least once (response rate = 45.9%). At Organization 2, 12,047 patients received the questionnaire; 7,819 completed it at least once (response rate = 64.9%). The majority of pre-visit questionnaires were completed by patients. Patients assisted by care partners in completing the survey were older and less likely to speak English as a first language. About 1 in 5 respondents (16.9% at Organization 1 and 22.8% at Organization 2) reported caregiving responsibilities. Of these respondents, 36.9% and 27.3% completed the CII. Across both organizations, 61% of patients accessing and completing the CI through any of the available means (QR codes on in office materials, link in the pre-visit survey, link *Correspondence: Catherine M. DesRoches Full list of author information is available at the end of the article © The Author(s) 2025. Open Access This article is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License, which permits any non-commercial use, sharing, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if you modified the licensed material. You do not have permission under this licence to share adapted material derived from this article or parts of it. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creati vecommons.org/licenses/by-nc-nd/4.0/. DesRoches et al. BMC Primary Care (2025) 26:356 Page 2 of 10 in the after-visit summary document) moderate caregiving intensity. Among all participants completing the CII 16.2% (Organization 1) and 19.5% (Organization 2) clicked on at least one resource. Conclusion To our knowledge, this pilot represents the first-of-its-kind effort to identify and support patients with caregiving responsibilities through a portal-based intervention. Our demonstration suggests a simple portal questionnaire, with the CII linked to resources, and supported with in-clinic materials, may successfully identify, engage, and support care partners, with minimal changes to clinician workflow. This approach may also offer an opportunity to digitally engage more vulnerable patients. As efforts to improve support for care partners gain traction, incorporation of this portal-based intervention offers an opportunity for widespread engagement and support. Keywords Caregiver, Care partner, Patient portal, Pre-visit questionnaire Question Can primary care practices identify and support family care partners through a simple portal based intervention? Findings Between 45.9% (Organization 1) and 64.9% (Organization 2) of patients receiving a pre-visit questionnaire completed it. Of these, 16.9% (Organization 1) and 22.8% (Organization 2) reported care partner responsibilities. 1,105 care partners completed the Caregiver Intensity Index (CII), with the majority reporting moderate levels of intensity. Between 16.2% (Organization 1) and 19.5% (Organization 2) of care partners completing the CII accessed a curated list of care partner resources. Meaning This first-of-its-kind demonstration suggests a simple portal questionnaire, with the CII linked to resources, and supported with in-clinic materials, may successfully identify, engage, and support care partners, with minimal changes to clinician workflow. Introduction Millions of adults in the United States help a family member or friend manage their health and well-being [1]. These care partners, often family members or other trusted adults, provide critical support for tasks such as dressing and bathing, managing medications and medical equipment, appointment transportation and attendance, and helping ensure follow-up with care plans [2–4]. Some research suggests that helping another person in this way has a protective health effect for care partners and can provide a sense of purpose and fulfillment [5–8]. Conversely, other research indicates a link between caregiving responsibilities and poorer mental and physical health [9–13]. Both care partners and those they assist can benefit from psychosocial support, but identifying care partners is challenging, as is linking them with needed services [14–16]. Their interactions with the healthcare system on behalf of patients rarely result in support for themselves [17, 18]. Adding time to a busy clinical visit to discuss caregiving responsibilities and available resources is often not feasible [19]. Identifying care partners (both patients with caregiving responsibilities and care partners accompanying patients to the visit) before or during clinical visits and connecting them to resources without adding to clinical work could be beneficial to (...truncated)