Emotional Impact and Clinical Trials
IMPORTANT NOTE
This section includes information about the emotional impact of taking part in clinical trials. While we recognise that we are not yet offering concrete solutions to these challenges, we believe it is important to include the feedback and perspectives shared by the women who participated in the Ovarian Cancer Australia study, ‘Exploring clinical trials awareness, information access and participation amongst Australians with ovarian cancer’.
Their experiences have given us valuable insight into the realities of trying to get information about clinical trials and being involved in clinical trials. We feel it is important to share these reflections and hope that with time, and as more research is done, that we can develop strategies to address some of the concerns raised. But for now, we would like to honour the voices of the women and for them to know that they are heard and understood.
The emotional impact of taking part in a Clinical Trial
The emotional impact of taking part in an ovarian cancer clinical trial is often significant. It can depend on your:
personal circumstances
cancer type
current treatment status
what information and resources are available to you.
Clinical trials can offer patients reassurance that they’re not in this alone – that they have a whole community of people supporting them with the purpose of improving the course of clinical care, both now and into the future.
The OCA study “Ovarian Cancer Clinical Trials Awareness, Information Access, and Participation”, highlighted several key psychological/emotional effects of taking part in clinical trials. They are outlined below.
The decision to join a trial
Hope
Many women expressed they felt a huge sense of hope by agreeing to take part in a clinical trial. They hoped that it could improve their own situation, such as extend their life or improve their quality of life.
Living with ovarian cancer: clinical trials, Ovarian Cancer Australia
Living with ovarian cancer: clinical trials, Ovarian Cancer Australia. Watch a short interview with a woman who chose to entering a trial in great hope of it helping her own personal situation
Desire to help others
Women who entered clinical trials also believed it may offer a chance at new and better treatments for future women with ovarian cancer. The emotional drive to take part in a clinical trial because they want to help others gives some people a sense of purpose and empowerment, despite their own difficult situation.
The experience of being diagnosed with ovarian cancer stage 4 made me very keen to help other women who discover they are on this path in the future. To contribute by participating in a clinical trial would be an honour.
I’m very happy to help anybody else.
These quotes reflect a powerful emotional connection to the idea of helping improve the lives of others, even when their own outcomes may be uncertain. It is important to maintain hope and give women a sense of control over their cancer journey.
Clinical trials are not just experiments – they are a lifeline. They provide patients with access to promising therapies and generate the high-quality evidence we need to incrementally transform outcomes for women with ovarian cancer. Every trial brings us one step closer to more personalised, effective, and hopeful care.
Trust and communication with healthcare providers
Another emotional factor that can influence the decision to take part in a clinical trial is having trust in healthcare providers. Older women (specifically those over 60) who took part in our study highlighted that being able to trust your doctors and nurses who suggest a trial to you makes a big difference in your decision to participate. Trust decreases anxiety and can boost your confidence in the trial process.
Some women said that they sometimes felt rushed during medical appointments and did not have the time to ask questions and express their concerns about going on a trial. This can lead to emotional stress and a sense of not being informed or as supported as they would like.
Getting information
You can always ask for a second opinion and/or contact our Helpline to speak with a cancer nurse. Ovarian Cancer Australia’s Helpline is available 9 am – 5 pm Monday to Friday 1300 660 334. You can also email support@ovariancancer.net.au
Gratitude
Despite the challenges to participating in trials, many women who took part in our study said they were grateful for the opportunity to contribute to scientific research. This was true even when it was not certain whether they would benefit directly from the trial.
Even if it’s not necessarily for the benefit of you, what if you benefit from them [the trials] down the track?
Some women viewed it as a step forward in their care and a way to possibly improve their health and wellbeing. Others felt that helping with future treatment options for others gave them a purpose and helped them find meaning in the difficulties of having ovarian cancer.
I think often we have to be very sick before we can go into a trial, so it may not benefit us, but it will help people in the future, so I’m willing to go into trials.
Empowerment and control
While many women feel uncertain about clinical trials, they also feel empowered when accessing information about clinical trials themselves.
I feel like I do need to do my own research and be my own strongest advocate.
About 44% of the women in the OCA study survey looked for information independently, often turning to online resources.
I did also sign up to the clinical trials website just to see whether anything comes up and I monitor it occasionally and go through it with all the right information to be able to get all the answers that I need.
This type of independence provides a sense of control, especially when women feel their health journey is largely out of their hands due to how unpredictable cancer and its treatment can be.
I think it depends on where you’re being treated … and how much of an advocate you are for yourself in chasing this stuff up.
Fear
Fear is a common emotional response to taking part in a clinical trial. There is a lot of information and decisions to make. This can feel overwhelming, especially when you are also trying to cope with a cancer diagnosis.
Many people say they fear:
potential unpleasant side effects from the treatment
being randomised to standard care and placebo, rather than the trial treatment, which can cause feelings of disappointment, frustration and uncertainty regarding your treatment path
not fitting the eligibility criteria and then missing out on a new treatment
not being able to access a trial due to location or lack of resources where they live
potential risks and safety of the treatment being tested
being treated like an ‘experiment’ rather than an individual needing personal care
not being able to navigate or understand complex medical and clinical trial information and decisions.
As a nurse, I’ve seen how emotional it can be for patients to decide to participate in a trial. It can sometimes be filled with fear and uncertainty, but I’ve also seen the courage it takes to move forward and the hope they gain, knowing they are helping others.
Disappointment and frustration
These emotions can arise from the challenges and barriers to being able to take part in a clinical trial. Our study found this included:
difficulty accessing information about clinical trials
complexity of understanding the trial and eligibility criteria
not being informed about available trials by your healthcare team
not being eligible for a trial.
I've constantly asked about clinical trials, and I've just found that it's been very difficult to get the relevant information or get the right detail.
Lack of clear communication between a patient and their treating team can cause significant feelings of frustration and being left behind in your cancer journey.
Just keep on pushing and asking. That … seemed to be about the best way to get some answers.
Our study also found that people living in rural areas or those diagnosed recently had less access to resources or support, sometimes making them feel frustrated and isolated.
I'm mortified at the lack of information and treatment options that are available to women, especially in rural areas around the country.
Women struggle to find clear information about clinical trials.
It needs to be good information as well as to what each trial is about and how people do qualify and where they need to go.
The process may be frustrating and overwhelming, especially if you are unwell. There can be a lot of confusing information to try to make sense of. Some women feel they are left alone to do this with little help from their health care team.
I want my oncologist to help me rather than me doing all the research. They’re the experts. Why should I do all the research?
While on a trial
If you are being treated for ovarian cancer, deciding to go on a clinical trial can be emotionally difficult and cause further disruption to your daily life.
Loss of control in your daily life
Many women say that the increase in appointments, tests and treatments made them feel out of control. It can begin to feel that your life is being dominated by your cancer and the clinical trial. This can cause emotional exhaustion and frustration.
Isolation and burden of travel
Living in rural or regional areas can mean challenges, such as travelling a long way to major cities for the treatment. This can place a huge emotional and financial burden on the participant. This is especially difficult for those who have limited social, emotional and financial support and adds further strain.
Frequent travelling can be physically and emotionally tiring and difficult if you are unwell, along with being away from your familiar and safe home environment. This can add stress to the experience of being on a clinical trial.
Concerns related to accessing information and making decisions
People who take part in a clinical trial often face the challenge of having to navigate complex medical information. The survey from our recent study showed that over 55% of women had not been given information about trials from their healthcare providers and 7% of women could not remember. Lacking accessible information creates a lot of emotional stress as patients become uncertain about their options and future care. Some women reported frustration over the difficulty of finding clear and easy-to-understand information about trials. Medical jargon, and complex and multiple treatment names made the information overwhelming to understand.
The emotional impact of joining a Clinical Trial, summarised:
Deciding to take part in a clinical trial can have a profound impact on women with ovarian cancer.
Many women report positive feelings such as hope, empowerment, gratitude and a sense of purpose.
Some women also experience fear, frustration and overwhelm during the process.
A lack of accessible, easy-to-understand information can often leave women uncertain about their options and the difficult decisions.
Emotional exhaustion from the disruption to daily life and frustration with finding information can make navigating the trial process challenging.
Women also feel comforted knowing they are contributing to research and potentially helping others. In the words of one woman with ovarian cancer: ‘I’m very happy to help anybody else’.
