Patient Engagement and Emotional Support

Biopharma companies offer many forms of support when therapy is initiated. Substantial research indicates people with rare or complex conditions require a more intensive level of support that includes addressing the emotional needs related to their condition.

Patients’ Emotional Burdens

The emotional toll patients experience is real. For example, according to the Kaiser Foundation, 32 percent of adults reported symptoms of anxiety and/or depressive disorder related to the COVID-19 pandemic.

Less novel diseases carry no less of an impact, the National Cancer Institute says 20 percent of patients with early-stage cancer, and 80 percent with recurrent cancer experience symptoms of post traumatic stress disorder. Mental Health America also says 33-50 percent of people with diabetes experience distress.

In all, 90 percent of people with rare diseases reported they had felt anxious, stressed, or depressed, according to CSL. Disease emotional impact is a reality every patient faces, and biopharma patient support programs should be prepared to help.

Emotional Impact and the Patient’s Personal Journey

Many are familiar with Dr. Elizabeth Kubler-Ross’s model of emotional impact for death and dying. The National Institutes of Health (NIH) reminds us it consists of five stages: Denial, Anger, Bargaining, Depression, and Acceptance. This model was first introduced in 1969. Since then, less linear paradigms have been developed, including this model by British psychologists Bowlby and Parkes.

Ready to Help

Patient engagement solutions are recommended that address both the clinical and non-clinical needs of patients. These include:

These all overlap in that they strive to make the patient’s journey easier. Less complication in the care process, for example, means fewer stress points for patients. Access to support groups can provide peace of mind and opens a constructive path and effective outlet for patients to deal with the emotional impact of their disease.

The Role of Nurse Navigators

Nurse Navigators provide digital and in-person patient support, coaching, and navigation from the time of prescription onward. They assist with therapy management to personalize the journey based on patient needs, barriers, and learning style. They are both an extension of and ambassadors from the patient engagement program.

The Nurse Navigator, as a primary point of contact, communicates and coordinates with HCP teams and other constituencies within the therapy process. They are a continuous go-to resource for patients, and that is important for both patient adherence to therapy and to relieve patients from some of the stress of the care process.

Engagement happens in a progressive manner because the Nurse Navigators are with the patient through each stage of the journey. Because of this, they recognize needs, wants, preferences, and the need for behaviors to change for the patient to get the full benefit of therapy. In sum, they engage the patient in every way described in the last section: providing information, problem-solving strategies, referring patients to support groups, and collaboration with the health care provider team.

Good for Patients, Good for All

Emotional support is part of a holistic model for patient engagement. There are likely figures who play a larger role in this, particularly families and/or additional resources a patient seeks on his or her own initiative. The contribution, however, of patient engagement programs is important, and a program must be prepared to act to the appropriate extent possible.

Quality of support is a positive factor in patient adherence and therapy outcomes. This more intensive level of patient engagement establishes pharma companies as more than a provider of therapeutic material, it establishes a positive and trusting relationship with the brand.