Communication between cancer specialists and patients has room for improvement in explaining treatment options and particularly the potential costs, an Australian study has found.
University of WA researchers interviewed 40 patients with breast, lung, prostate or colorectal cancer and found their perception of the communication with their cancer specialists was “variable and in many cases sub-optimal.”
Most patients said they were satisfied with the level of information provided by the specialist, though many were initially overwhelmed by its amount and complexity, and needed to ‘Google’ to understand the scary and unfamiliar terminology.
Some patients said they were less than satisfied because their specialist failed to explain the aim and rationale of the treatment and possible different options available to them.
The strongest feedback about specialist communication related to unexpected costs of treatment, with many patients lamenting the lack of discussion about financial aspects of their treatment options.
“I did not think it was going to be cheap, I knew there was going to be some form of gap,” commented one study participant. “[But] I did not realise until after the operation, I found out then that it was going to cost $10,000”.
This showed a clear need for transparency regarding the costs of health and/or support services, said the researchers, led by Dr Neli Slavova-Azmanova and including breast cancer surgeon Professor Christobel Saunders among the co-authors of the article in Supportive Care in Cancer.
“Other sub-themes that arose included the importance of communication about available treatment providers, differences between treatment in the public and the private sector, the impact of private health insurance and availability of local services,” they wrote.
“Being offered a choice of treatment providers, including at a local level, and being in control of their treatment pathway was valued by participants,” they added.
Cancer patients were generally satisfied with communication around continuity of care and the role of cancer nurses was particularly valued.
However some said they felt unsupported and left in the dark once their specialist treatment was completed and they entered the survivorship or community phase of care.
“Once the patient’s condition was under control, the number of appointments reduced and the connection with cancer specialists weakened. Participants felt abandoned and left to navigate their ongoing health issues in a health care system they perceived,” the researchers wrote.
They said their study had a number of important messages for all health providers who care for patients with cancer and they provided the following recommendations:
- The level of engagement in treatment decision making is ascertained at each step of the patients’ journey
- Rural patients are provided with information about diagnostic and treatment services available locally.
- Patients are well informed and given choice between public and private treatment providers.
- There is cost transparency for tests, procedures and treatments.
- Patients are fully informed of the treatment cost prior to treatment commencement.
- All patients have access to a cancer nurse.
- There is timely communication between all health providers involved in the patient’s care and continuum of care.