As for many immunocompromised patients, the fear of contracting COVID-19 during the pandemic has contributed to a high psychological burden for patients with cancer.

Speaking at the Blood 2021 Congress, Dr Nienke Zomerdijk said that fear and concern about their care with disruptions to services, has been compounded by extensive media coverage of COVID-19 and frequent changes in available information.

“And while fear is a normal response to a threat like COVID-19, we do need to identify those patients who are experiencing severe levels of distress,” she said.

“We can do that by asking how concerned they are about being infected with COVID-19 and use validated instruments such as a stress thermometer to identify the need for referral.”

Dr Zomerdijk, a Postdoctoral Research Fellow in Psycho-Oncology at the Melbourne School of Psychological Sciences and the Victorian Comprehensive Cancer Centre Alliance, said a survey of almost 400 patients published earlier this year showed 35% of patients reported clinical levels of distress.

She then presented a thematic analysis from more in-depth phone interviews with 24 patients with haematological cancers, revealing insights into their experiences, concerns and needs during COVID-19.

The qualitative study published in September confirmed that fears about contracting COVID-19 were the main concern.

“Participants were worried about the impact that catching COVID-19 would have on their health and those thoughts were pervasive and led to feelings of anxiety, acute fear and distress.”

She said patients compared their level of fear to when they were first diagnosed with their haematological cancer. The mean time from their diagnosis was almost three years.

Patients described their disappointment at family members, friends and the general public who they thought were not taking precautions to help immunocompromised persons.

“Many participants expressed their annoyance towards those they viewed as not taking the pandemic seriously.”

Consequently, many stayed home as much as possible and had very little contact with family and friends.

“So that meant they had reduced opportunities for meaningful social interaction and it had a significant impact on their emotional wellbeing. This was especially the case for participants who had previously undergone lengthy treatment like stem cell transplantation.”

She said COVID-19 had deepened the sense of loneliness they had previously experienced.

Psychosocial care

Dr Zomerdijk said participants had found it challenging to access psychosocial care during the pandemic.

“So while some maintained contact, others were unaware if services were being continued virtually or they had difficulty attending them due to capacity restrictions. These patients reported falling through the cracks in the system resulting in a loss of support.”

Participants also reported difficulty with access to trusted information.

“Some described that they looked for information online but found it difficult to obtain information specifically aimed at immunocompromised patients. And that led to uncertainty about how to protect their health and wellbeing and this was also often made worse by change in information about the effectiveness of strategies to contain the virus.”

“If we have learnt anything from this pandemic, it is that it has been largely an infodemic. Participants found that information often changed and it lacked consistency which caused confusion about what they could and couldn’t do to protect their health.”

Most patients were however generally satisfied with their experience of telehealth.

They found it was convenient and saved them time and costs, despite being somewhat less personal and accompanied by some technology challenges.

“Our results highlight the need for clear communication regarding the availability of support services and we have of course seen many campaigns encouraging people to see their GP for example to avoid delays in cancer diagnoses. But this equally applies to psychosocial care.”

“It is really important for us to reassure patients that support is available particularly once restrictions are lifted in Australia and cases do remain high. Patients who are immunocompromised will be approaching a new wave of concerns about their level of protection after the vaccine.”

Dr Zomerdijk said a study was being developed to similarly assess the impact on healthcare workers.