A Rationale and Step-by-Step Strategy for Including Care Partners in MS Care

Abstract

The care partner (CP) (a more contemporary label than the traditional caregiver) for your patient with multiple sclerosis (MS)—whether a spouse/partner, relative, or close friend—is integral to the success of your treatment plan. They provide care, support, and assistance to their loved one while also attending to myriad other responsibilities. Because CPs are often taken for granted by family, friends, and health care providers, their physical and emotional well-being is ignored—and they feel selfish and guilty about attending to it themselves. By including the CP in your review of findings and treatment recommendations throughout the disease course, and soliciting their input and observations, you are helping ensure the successful implementation of your plan over time as well as demonstrating sensitivity to the CP’s well-being. We offer tips to solo practitioners and specialty MS centers on ways to include CPs from the time of diagnosis forward, helping to ensure optimal treatment outcomes as well as support for the CPs who carry out your recommendations.

Introduction

When you are sitting in your consulting room with a patient with MS performing a neurologic exam, discussing test results, formulating a care plan, or answering questions, you may or may not be including the other person most likely to be impacted by the outcome of the visit. The patient's partner, spouse, sibling, adult child, older parent, or friend may not only be impacted by the recommendations you are making but may also be integral to your treatment plan’s implementation and success. As people with MS and their family members have told us, “MS is a ‘we disease’, not a ‘me disease.’” With that in mind, attending to the well-being of patients with MS as well as their CPs is essential for family well-being and optimal treatment outcomes.

In the very limited time available during office visits, it may seem impossible to attend to the needs of the patient’s CP or invite their input. Our goal is to provide you with a practical and efficient road map for engagement with, and support for, your patient’s primary CP.

Background

Given the critical role played by those who care and provide support for people with chronic illness and disability, it is surprising how little attention has been paid to them in recent years. In 1988, Andolsek and colleagues referred to caregivers as “the invisible patients.” The literature on caregiver burden, which focuses primarily on spouses and partners, describes in vivid detail the onerous responsibilities borne by a person who cares for an older, chronically ill, or disabled family member (Stucki & Mulvey, 2000). Buhse (2008) described caregiver burden as a “multidimensional response to physical, emotional, social, and financial stressors associated with the caregiving experience.” Aronson (1997) differentiated between objective caregiver burden, including hours spent, income lost, and number of tasks or responsibilities, and subjective caregiver burden, which is the person’s reaction to, and perception of, the caregiving role. In her research, Aronson found that it was this subjective response that had been associated with a greater risk of depression and reduced quality of life among caregivers. McKenzie and colleagues (2015) evaluated the impact of caregiver stress on the emotional and physical health of caregivers of people with MS who were enrolled in the North American Research Committee on Multiple Sclerosis (NARCOMS). These caregivers reported significant physical and psychological health concerns as well as an adverse impact on their employment. Not surprisingly, the caregivers of individuals with primary progressive MS experienced greater caregiving burden than the caregivers of those with relapsing or secondary- progressive MS. A 2023 qualitative study by Benini and colleagues found that caregiver fatigue, isolation, and loneliness significantly impacted caregivers’ quality of life and health status. The authors concluded, “These needs should be at the core of health policies in order to avoid physical and emotional breakdowns [that] could lead to the rupture of the relational balance on which home care is based."

One important aspect of the caregiving experience that has received almost no attention is the impact on patient outcomes. While it may be intuitively obvious that patients fare better physically and emotionally when their caregivers are cared for and supported, the data are meager. The Journal of the Catholic Health Association presented a Caring for Caregivers Model developed at Rush University Medical Center (Carbonell, 2023) to address the needs of older patients and their caregivers. The 2-pronged goal of the model (which they make available to other health systems) is to change how the health system identifies and addresses the needs of family caregivers of older adults, and to provide education and support to improve their own and their care recipients’ well-being. Participation in this program resulted in reduced caregiver burden, depression, and anxiety at 1, 3, and 6 months after participation in the program. In addition, the number of hospital admissions, length of hospital stays, and emergency department visits were lower in the 6 months following the program than in the 6 months leading up to the program. We are aware of no similar studies focusing specifically on families that are managing chronic illness and disability, but there is likely significant overlap between these and the older population.

Key Touchpoints With MS Care Partners

When CPs remain invisible to MS care providers, their physical and emotional well-being goes unnoticed by the health care team (just as it is often ignored by extended family and friends). When their exhaustion, mood changes, unhealthy habits, isolation, heightened stress, and intense anxiety about the future are ignored, these factors impact the support and care they can offer your patient. To avoid making erroneous assumptions about the health of the CP, the help and care they can provide, and the situation in the home, it’s important to include CPs in your care plan from the beginning. With that in mind, it is important to find out who is assisting and supporting your patient—who they are, what their relationship is to the patient, and in what ways they feel they can be available and helpful. Without gathering that information, you may be sending your patient off with a treatment plan that has little chance of success.

• At the time of diagnosis (whether you are in a solo practice or MS center)
  • With the patient’s permission, invite the CP to participate in conversations about the diagnostic process, disease course, importance of early treatment, treatment options (including benefits and risks), and realistic expectations, making sure that both the patient and their CP have the opportunity to ask questions.
  • Set the stage for ongoing contact with both partners by explaining that MS may change unpredictably over time, and that it takes teamwork with each other and with you to manage it optimally.
  • Begin immediately to encourage the CP to find their own sources of support. Offer them a list of resources that they can tap into as they feel ready. But encourage them from the beginning to visit the MS Care Partner Connection (http://MSCarePartnerConnection.com)—a website designed and created by MS care partners to help others find information, support, and resources (Kalb et al, 2023), and to register for the Can Do Multiple Sclerosis quarterly Care Partner Meet-ups, where they can learn, connect with other CPs, and find solutions to common challenges. If you are a solo practitioner, these connections with available resources may be the extent of what you are able to provide.

• During follow-up visits
  • These visits offer you and/or other members of your comprehensive care team opportunities to engage more extensively with CPs.
  • With the patient’s permission, encourage the CP to attend at least part of every visit to hear findings (MRI, neurology exam, test results), provide their perspective on changing MS symptoms (including mood and cognition, changes in abilities, intimacy, or role functions), and share how they are doing.
  • Consider providing a brief checklist for the CP to fill out in the waiting room or submit via the electronic medical record to ensure that you get the full picture of what has occurred since your last visit with the patient.
• When disease activity and/or progression occurs
  • You or other care team members can ask both the patient and the CP for their perceptions of what has changed.
  • Explain treatment options, including potential risks, benefits, and reasonable expectations (recognizing that the patient and CP may have different levels of risk tolerance and different expectations for treatment outcomes).
  • Discuss rehabilitation options, with an emphasis on how rehabilitation interventions can support the care partnership.
    • Physical therapy: particularly related to exercise, assistive devices, fall prevention (emphasizing that mobility aids help family members stay active together)
    • Occupational therapy: particularly related to fatigue management, fall prevention, house and office organization, meal preparation
    • Speech-language pathology: if either the patient or CP describes cognitive changes
  • Highlight the importance of planning for unpredictability (financial and life planning, employment options, SSD if appropriate),and refer the partners to the National Multiple Sclerosis Society for essential resources: Financial Planning, Employment information, and Applying for Social Security Disability Benefits.
  • Ask the CP if they are getting the information, support, and assistance they need and remind them to tap into the resources that are available to them. CPs should be reminded that they do not need to do it all alone.

• In the event the MS becomes severely disabling
  • It is helpful for you and other team members to continue to see the partners together to assess the situation and make recommendations.
  • Ask about their biggest challenges and sources of stress, keeping in mind that, from the perspective of CPs, bowel issues, aging, functional decline, and comorbid health conditions are the most common precipitants for nursing home placement (Buchanan et al, 2010).
  • Ask for time alone with the CP to get their perspective and assess their well-being (particularly important with men who are less likely to seek assistance and/or support). Be prepared to make a referral for mental health and/or social services.
  • If you feel that a long-term care setting may be needed, discuss this with both partners. Explain why this may be the safest option for both of them and encourage them to educate themselves about available facilities. With your help, this can be a shared decision.

Conclusions

Healthy care partnerships offer a strong foundation for your treatment plans. You can help these partnerships thrive by attending to the physical and emotional well-being of your patients and their primary CPs from the beginning. In spite of the limited time available in your follow-up visits, you can set the stage by acknowledging the CP role, inviting their input, and helping them connect to helpful resources.

References
1. Andolsek KM, Clapp-Channing NE, Gehlbach SH, et al. Caregiving in elderly relatives: the prevalence of caregiving in a family practice. Arch Intern Med. 1988;148(10):2177-2180. doi:10.1001/archinte.148.10.2177
2. Stucki BR, Mulvey J. Can aging baby boomers avoid the nursing home? long-term care insurance for aging in place. American Council of Life Insurers. 2000.
3. Buhse M. Assessment of caregiver burden in families of persons with multiple sclerosis. J Neurosci Nurs. 2008;40(1):25-31. doi:10.1097/01376517-200802000-00005
4. Aronson KJ. Quality of life among persons with multiple sclerosis and their caregivers. Neurology. 1997;48(1):74-80. doi:10.1212/wnl.48.1.74
5. McKenzie T, Quig ME, Tyry T, et al. Care partners and multiple sclerosis: differential effect on men and women. Int J MS Care. 2015;17(6):253-260. doi:10.7224/1537-2073.2014-083
6. Benini S, Pellegrini E, Descovich C, Lugaresi A. Burden and resources in caregivers of people with multiple sclerosis: a qualitative study. PLoS One. 2023;18(4):e0265297. doi:10.1371/journal.pone.0265297
7. Golden R, Mariani D, Pelton L, Moro T, Carbonell E. Facilitating caregiver health and wellness: age-friendly health system caring for caregivers (AFHS-C4C). Innovation in Aging. 2022;6(suppl 1):138. doi:10.1093/geroni/igac059.549
8. Kalb RC, Miller D, Strum J, Loud S. Addressing the needs of multiple sclerosis caregivers from diagnosis onward: the development of a comprehensive online caregiver protocol. Int J MS Care. 2023;25(6):273–277. doi:10.7224/1537-2073.2023-075
9. Buchanan RJ, Radin D, Huang C, Zhu L. Caregiver perceptions associated with risk of nursing home admission for people with multiple sclerosis. Disabil Health J. 2010;3(2):117-124. doi:10.1016/j.dhjo.2009.08.003