Delays in referral and diagnosis and a lack of continuity of care cause anxiety and a waste of money and everyone’s time.
Poor communication, long wait times and conflicting medical advice cause unnecessary anxiety for lung cancer patients and their carers, new research shows.
An analysis of patient experience has found that patients may have multiple medical appointments which could lead to delays in diagnosis and treatment, and those challenges were magnified in rural, remote and regional areas.
The Townsville researchers also found that lung cancer patients may be sent to oncology appointments before having the appropriate tests.
The researchers interviewed newly diagnosed patients and their carers about their experiences as part of an analysis of a lung cancer referral pathway implemented by Townsville Hospital that enables GPs to refer cancer patients.
They found that patients were unhappy with poor communication from GPs and specialists and with delays in being told about test results.
Patient experiences would be improved by addressing barriers including perceived delays in diagnosis and specialist appointments, frequent turnover and lack of clinician time, improper communication and use of telephone consultations and lack of adequate psychosocial support, they said.
“Patients and their carers in this study indicated high satisfaction with care if they had every step of the lung cancer referral pathway clearly explained to them,” they wrote in the Internal Medicine Journal.
“Our study also suggests that avoiding delays in investigations and informing them about test results as soon as available can reduce patient anxiety and distress.”
They said these delays caused significant anxiety and distress to some patients and carers.
“Many patients felt that since their GPs did not take their symptoms seriously during initial consultations, their diagnosis and treatment were delayed,” the researchers said.
Some patients said that frequent turnover of GPs in their rural area resulted in delayed diagnosis. “Another concern voiced by some patients was that the delays may have caused their tumours to grow while they were waiting, which led to worse outcomes.”
Lead author and medical oncologist Dr Zulfiquer Otty said a cancer referral pathway enabled GPs to refer patients and help avoid unnecessary tests, travel and inappropriate referrals to specialists, such as referring patients to oncologists without doing an X-ray or CT scan.
“Sometimes patients come directly to the oncology clinic, which is actually not appropriate, and we see benign cases that fill up our clinics with non-cancer cases, when this person needs to be ideally seen by a respiratory specialist first and investigated and diagnosed before they are sent to an oncologist or surgeon.”
Dr Otty told OR that even after patients were referred to a specialist clinic there could be delays, especially in rural and regional areas.
“Delaying diagnosis is shown to reduce survival. If patients are diagnosed early, they can be cured. If there is a delay even by a few months, it can become incurable,” he said.
“The lung cancer pathway, which is available online for all GPs to refer the patient to appropriate specialists, could reduce delays in care and improve the satisfaction of patients,” said Dr Otty, staff specialist in medical oncology at Townsville Cancer Centre and senior lecturer and PhD candidate at James Cook University.
Dr Otty said it was important for doctors to understand the individual needs of patients regarding information and levels of detail, and concerns they may have other than the diagnosis and treatment.
“Some patients are not very concerned about the details, and they just want the diagnosis and treatment as soon as possible, while other patients or their carers would like to have more involvement in the decision-making and need more information.”
Some patients reported that the information they received was too technical, he said.
“Many of the specialists or even the GPs don’t have much time to spend with patients so sometimes they are abrupt and don’t take into account what the concerns of the patients are.”
If patients saw different GPs due to a high turnover of GPs and specialists in rural and regional areas, that could lead to poor continuity of care and delays in diagnosis.
For example, Dr Otty said a patient may be diagnosed with a lung infection and be prescribed antibiotics, then later return and see a different GP who also treated it as a chest infection, delaying a cancer diagnosis.
“Long-term GPs who know the patients well will be supportive of the patients and will try to get specialist appointment as soon as possible,” he said.
Dr Otty said the period of waiting for a diagnosis caused the most distress for patients and families.
“Most of our patients told us that during delays they feel that the cancer is growing and might be spreading to other places.
“Once they have a diagnosis and plan of treatment, they’re a bit more certain of what is going to happen.”
Better coordination between hospitals would also improve patient experiences, he said.