How patients and carers helped shape five immunotherapy videos

Starting a cancer treatment can bring practical questions alongside questions about how it works. For immune checkpoint inhibitor therapy, often called immunotherapy, those questions may include what to expect before an infusion, which side effects to watch for, and how treatment fits with everyday life. A 2021 study describes how patients, family carers and others helped shape five videos around these concerns.

The project focused on resources for people commencing and managing this treatment. Its aim was to identify the information and support patients and carers wanted, alongside topics clinicians recommended for nurse-led education before treatment. The result was a completed video suite called “Immunotherapy: What to Expect,” with each video addressing a different part of the experience.

Five videos for the questions around treatment

The videos covered general treatment information, preparation for an infusion, potential side effects, balancing lifestyle with treatment, and seeking support. Together, the subjects extend beyond an explanation of the treatment itself: they address moments before and during care, as well as concerns that can arise in daily life.

Each video ran from 6 to 15 minutes. The researchers reported that the videos were available to patients and carers through YouTube. That makes the output a set of finished resources rather than a proposal for videos still to be made. The study’s focus, however, was how the resources were developed, not what happened after viewers watched them.

Patients and carers helped shape the content

The team used experience-based co-design, an approach that brings people who use a service into the process of shaping it. Here, 35 individuals contributed to developing the videos. The abstract does not break down those contributors by role, so it is not possible to say how many were patients, carers or clinicians, or to assign particular suggestions to any group.

The work moved through four reported stages. First came qualitative interviews, which gathered people’s experiences and information needs. Those accounts fed into a co-design workshop. The team then developed a filming plan, followed by feedback and editing. In this sequence, input was gathered before filming and continued into review of the emerging resources.

The researchers describe this process as a way to keep patient and carer needs present through both research design and video development. They also say it supported transparency and continuity in the project’s message, scope and intended outcomes. The practical point is that the five topics were developed through a process that included the people the resources were meant to serve, rather than being presented simply as a clinician-authored list.

What the study can tell us about the videos

The evidence reported in the February 2021 paper supports a clear account of development: 35 people contributed, the team followed four stages, and five videos were produced and reported as available online. It also describes the subjects and length of those videos.

It does not establish whether watching them improved understanding, helped people identify or report side effects, or changed health outcomes. Nor does the abstract show how widely patients used them or whether clinics incorporated them into routine education. Availability is a useful practical milestone, but it does not by itself demonstrate that a resource reached its intended audience or helped people in care.

What better immunotherapy preparation could mean for patients

Resources shaped around patients’ and carers’ questions could give people a more relevant starting point as they prepare for treatment, including a clearer route to information about possible side effects and support. That benefit depends on viewers understanding and using the material in their care; the development study establishes the videos’ creation and reported availability, not that downstream effect.

Key Sources

• Primary source: Co-design and development of online video resources about immunotherapy with patients and their family.
  DOI or Journal Page · Peer-Reviewed Paper · 2021-02-01