Coughing does not have to mean the same thing in primary care as in the office of the pulmonary oncologist. Research on cancer, and the standardised care pathways, are mostly based on set diagnoses and are mainly based on research done in secondary care. This became clear to General Practitioners Elinor Nemlander and Eliya Abedi – Sweden needs more primary care-focused research, based on symptoms and not diagnoses.
For almost every cancer diagnosis Sweden has a national standardized care pathway: what assessments should be done, what treatment can be given and a time frame for the time allowed to pass between suspicion and treatment. After its introduction in 2015, the expected impact in primary care was delayed. Perhaps precisely because the care pathway is based on diagnoses.
– Patients come to primary care with symptoms – not diagnoses, says Elinor Nemlander. If you cough at a pulmonary oncological clinic, the probability that the cough is due to lung cancer is quite large. Coughing is one of the most frequently diagnosed symptoms in primary care, but a GP doesn’t even see one new lung cancer patient a year. It is not always the case that symptoms that are predictive of cancer in secondary care are equally predictive of cancer in primary care.
Patients come to primary care with symptoms – not diagnoses.
Elinor and Eliya have been working since 2017 with adapting the standardized care pathways and educating health care personnel as part of the knowledge team CaPrim – an abbreviation of cancer in primary care. CaPrim is part of Academic Primary Care Center – a joint venture between Stockholm Health Care Region, Karolinska Institutet and other partners for education, research and development for students and healthcare professionals working in primary care.
Earlier this year, Elinor and Eliya were enrolled as PhD students at Karolinska Institutet. They will research on precisely how cancer can be detected earlier in primary care. Elinor’s focus is on what symptoms may indicate cancer.
– The research so far has largely looked back at patients with cancer diagnosis in secondary care and what symptoms they had before diagnosis. But there is limited research on those seeking for the same symptoms in primary care. For example, how predictive is anemia for cancer in primary care?
Elinor will also investigate combinations of factors that may indicate lung cancer in patients who have never smoked. These may include factors such as symptoms, findings during assessments, lifestyle and other diagnosed disease. Finding the right combinations is crucial.
– We should not fail to detect those who have cancer, but we cannot investigate everyone with symptoms. There are also risks associated with over-investigation, such as unnecessary anxiety for the patient, neglect of other possible care and increased costs of care. We need to find ways to detect the right people to further assess. This can be done with IT support and risk assessment tools which, for example, could find the combinations that increase the risk of cancer.
We should not fail to detect those who have cancer, but we cannot investigate everyone with symptoms.
When it comes to risk assessment tools, the UK often comes up as an example.
– Unfortunately their health care system is divided in a different way than ours, so we can’t use their model outright. Much of what is done in primary care here is done in secondary care there. Eliya will do more research on risk assessment tools, looking specifically at colorectal cancer.
In Sweden, between 70 and 85 percent of patients, who later turn out to have cancer, start their investigation within primary care. But often it takes a long time and numerous visits before the diagnosis is made. Most reports of diagnostic errors related to primary care regard delayed or lack of cancer diagnosis.
– Eliya will look at whether an increased number of visits to primary care in a short period of time is predictive of cancer.
Elinor and Eliya spend half of their time on their PdD positions. The other half of their working hours, they work as general practitioners.
– This means that we have contact with the operational work on the floor in a different way, that we are clinically active. We hope that our research can contribute with scientific input to risk assessment tools that we and our colleagues can then use in our daily work.
Why has there been so little research in primary care so far? Elinor believes it is due to a lack of economic preconditions and time. The proportion of research funding going to primary care is small. There’s so much to do at the clinic that it’s hard to keep up with anything else. And also the very breadth of topics to target. It is not easy to find someone who works in primary care, who wants to do research and is interested in cancer.
– Actually, I ended up here mostly by accident. It started with my being involved in management work during my duties as specialist. That’s where I was recruited into CaPrim. That I chose to start researching was because of CaPrim. It became clear that this is research that is lacking and needed.