Dealing with significant health challenges requires expert medical care — and the support of committed caregivers who always have the needs of the patient in mind. But what do caregivers need to do this effectively? When Don Selmon’s wife, Carla, was diagnosed with cancer, he found his sudden role as her caregiver overwhelming. “There is so much information to process and keep track of,” he says. “There is simply too much data to try and remember not to use some sort of system. I personally created Excel spreadsheets so I could keep track of drugs she was taking for side effects, daily vitals, upcoming scans and appointments, question sets when meeting with our trial doc, etc.”
Selmon’s experience as his wife’s caregiver quickly showed him how vital that role is. “We can’t sit still with an enemy like cancer,” he says, noting that as a caregiver his roles included “cheerleader, confidant, shoulder to vent on — always doing my best to have her back in meetings and in treatment.”
Another crucial role caregivers play is often overlooked: helping patients discover clinical trials that can offer hope, relief, and, possibly, the greatest gift of all: more time.
Finding clinical trials
“Caregivers play a critical role in helping patients process the information that they are hearing from their treatment team and help them weigh the options,” says Sharon Hanlon, head of clinical trial engagement and enrollment at Bristol-Myers Squibb (BMS). “They may play a role in the decision to participate in a clinical trial, doing some homework on behalf of the patient to help with their decision.”
Caregivers often start with a simple online search to find out about clinical trials. Web resources like clinicaltrials.gov can be easy to find, but trying to use because the trial descriptions can be difficult to read, and often assume a medical background that many caregivers lack. To help caregivers more easily access this crucial information, many pharmaceutical companies have created patient-focused websites that make it easier to identify appropriate trials.
“Ours is BMS Study Connect,” says Hanlon, “which utilizes patient-friendly language to help simplify the process and help make the journey easier. We also provide informational resources such as patient stories, such as the one here of the experience of a patient and caregiver during their clinical trial.”
At Study Connect, patients or their caregivers can use straightforward tools to find potential clinical trials they can participate in. Even though the site is run by BMS, Study Connect searches all possible trials, even those not sponsored by BMS, something similar websites don’t offer.
Supporting caregivers
Despite their vital importance, the tremendous — and sometimes exhausting — efforts caregivers contribute is not always visible. “I often say that caregivers are the forgotten member of the patient experience,” Hanlon says, noting that they often experience feelings of powerlessness and stress around the experience. Caregivers are just as much in need of emotional and practical support as the patients they’re looking out for, and companies like BMS have also set up online resources where caregivers can exchange information and support each other.
“Web communities present an outlet for caregivers,” Hanlon says, “providing access to information.” For example, BMS participates in the Inspire Community making it available for patients, caregivers, and healthcare professionals. Members of the forum can support each other emotionally, compare notes, and discuss trials they have learned about or are participating in. Inspire surveyed patient and caregiver members about clinical trial perceptions in late 2018, and found that almost a third – 31 percent – of all respondents had tried to sign up for a clinical trial, and 21% agreed with the statement “clinical trial information is too confusing.” As a result of this information now many Inspire communities have sections that devoted specifically to clinical trials discussions to provide support and further information.
However, different people use Inspire in different ways. For Don Selmon, it was a vital connection to shared experience. “I utilized Inspire to learn more about the reported impacts of various treatments,” he says. “It was of great benefit to me as it helped me prepare as a caregiver for what might come from my wife’s treatment and how best to help her.”
Sometimes that connection is the best help a caregiver can receive. As Hanlon notes, “Sometimes the simplest connection is often the most impactful!”
