Author: Prerna Rana

In our previous post, “Surviving Survival: Unmooring After the Patient Journey,” we explored the myriad challenges patients and their families face after finishing treatment for a medical condition. We also encouraged healthcare and pharmaceutical companies — along with the market researchers who work with them — to include these post-treatment patients in qualitative research studies.

Bonnie Dibling, CEO & Lead Healthcare Researcher
March 25, 2024

Over the span of my 25-year career in qualitative research, I’ve had the privilege of collaborating with healthcare and pharmaceutical innovators whose breakthrough treatments have helped countless patients struggling with serious and chronic conditions. In this work, I’ve seen first-hand the dedication, compassion, and drive of medical professionals and researchers as they strive to find cures for often devastating diseases.

I’ve also had the privilege of talking with hundreds of patients, family members, and caregivers for whom these innovative treatments are meant. Following several recent projects we completed with a biotech company developing a novel treatment for certain chronic diseases, I’ve been thinking more and more about what happens to these patients after their treatment is finished.

Clearly, finding out that the treatment worked and the patient is now disease-free are causes for celebration and relief. But for many patients as well as their loved ones, the end of a long and difficult treatment can trigger the start of an emotional struggle. And unlike the original disease, this psychological aftereffect often goes untreated.

Abandoned, Anxious, and Alone

People who have been successfully treated for cancer, autoimmune disorders, heart attacks, strokes, chronic diseases, and any number of serious conditions can experience what I’ve come to think of a “patient unmooring.” Given a clean bill of health, these patients are in essence cut loose from their doctor and care team, and told to go forth and live their lives. Besides the annual follow-up, there are no more doctor’s visits, no more therapy appointments, no more competent medical professionals guiding them. This can leave patients feeling abandoned.

The disease may be gone, but the trauma left by the patient’s medical experience is still very much present. This trauma can manifest itself in multiple ways. Fearful that the disease will return, patients may start to catastrophize. Feelings of anxiety and depression creep in, overshadowing any joy that comes with a clean scan or encouraging lab result.

Studies reported by the Lancet Oncology, for instance, found that long-term cancer survivors and their spouses experience higher incidents of anxiety than participants in healthy controls. A 2023 study published the General Hospital Psychiatry journal showed a high prevalence of anxiety and depression in survivors of cardiac arrest (up to 24%), with anxiety symptoms persisting for one year or more.

In studies of COVID-19 patients who had been treated in the ICU, feelings of anxiety and depression in these patients increased over time and remained high even 12 months after discharge. According to the findings, 42% of these patients experienced long-term anxiety and 40% suffered from lingering depression.

Patients who are unable to be overjoyed or grateful for their recovery may also have feelings of guilt and shame. It can seem like everyone around them — from providers to loved ones — expects the patient to pick up right where they left off before they got sick. This can lead to feelings of isolation, as patients are unable to share what they’re going through with others.

Medical Trauma After Treatment

Indeed, the post-treatment experience of some patients falls within the definition of post-traumatic stress disorder (PTSD) — a health condition triggered by a terrifying event. The International Society for Traumatic Stress Studies reports that 20% to 30% of people who receive intensive care experience PTSD symptoms after being discharged. Studies reported by Frontiers in Psychology also show a high incidence of PTSD for patients who have been in vulnerable medical situations, including childbirth.

Often referred to as medical trauma, medically related PTSD can result from a patient’s exposure to pain, injury, serious illness, and medical procedures. Lengthy, complex, and/or painful or intrusive treatments coupled with uncertainty around outcomes certainly fall within the medical-trauma category. Symptoms of medical trauma run the gamut and can include numbness, disassociation, panic attacks, feelings of rage or shame, substance use, eating disorders, self-harm, compulsive behaviors, sleep problems, as well as anxiety and depression. I’ve heard patients describing many of these symptoms when speaking about their post-treatment experiences.

While trying to navigate these psychological hurdles after completing their treatment, patients have no care team or doctor to turn to, and no tools or resources to guide them. Which leads to the question: Why not? And a follow-up question: How can we change this?

Meeting the Challenge with Research

Here is my challenge to the healthcare, medical, and pharmaceutical community, including the qual researchers who help them better understand patients (I count myself among those). In the noble quest to develop and launch breakthrough treatments for chronic and serious medical conditions, healthcare innovators must also consider what happens after the treatment.

What can be done to avoid patient unmooring? How can we keep patients connected to compassionate and competent medical professionals trained to help them understand and manage the physical, mental, and emotional impact of the trauma they’ve lived through?

Understandably, the focus of novel treatments has long been on the clinical ramifications for survival. Cure the disease so that the patient can live. Let’s expand the focus to include what that life is like once the treatment is finished and the disease has been vanquished. In our qual research, let’s learn more about the needs of these patients and their families post-treatment and use those insights to inform innovative strategies to support their mental wellbeing.

A few of these strategies have already been tried and tested with encouraging results. The non-profit Regenstrief Institute and the Indiana University Melvin and Bren Simon Comprehensive Cancer Center recently co-launched a pilot study for breast cancer survivors incorporating acceptance and commitment therapy (ACT). After receiving 6 weeks of group-based ACT, women participating in the study developed better skills and tools to help them cope with distress and anxiety. Six months after completing the program, the women reported a significant reduction in their fear of cancer recurrence as well as fewer symptoms of anxiety and depression.

Another pilot program launched by the Arizona State University Edson College of Nursing and Health Innovation explored the benefits of digital storytelling to help patients who had undergone hematopoietic stem cell transplantation (HSCT) as well as their caregivers. Participants completed a digital storytelling workshop, then together they watched the digital stories they had created about their personal experiences. Researchers are now assessing whether these shared stories helped the HSCT treatment survivors and their caregivers cope with psychosocial distress and isolation.

While these pilot programs are a promising start, there are significantly more untapped opportunities to explore post-treatment patient care focused on emotional and mental wellbeing. As mission-driven innovators seeking to improve lives, healthcare and pharmaceutical companies also have the opportunity to lead the charge in this type of research.

As qual researchers who specialize in healthcare, we would welcome participating in these studies. And we think patients would as well.