Most people who get cancer survive. The treatment now available means they are likely to die, years later, of some cause other than cancer. That’s great news. Unfortunately in many cases the intervening years may be punctuated by symptoms or problems that are related to the treatment. So cancer like many other human ailments is a ‘chronic’ illness rather a problem that is ‘cured’. For cancer it is likely that one group of doctors will offer treatment (specialists) but another group of practitioners (generalists) will be called on if there are problems later. The experience of many people in these circumstances is that a lot more could be done to help after treatment. Our team recently conducted a series of studies to explore what happens, from the practitioners’ perspective, given that one might want to develop interventions to assist them do a better job. In one study we focused on prostate cancer, you can read the paper and watch a video of how men might present to their doctors here. As we deployed simulations, no patients were harmed in this study. I present the results with reference to a map offered in an earlier blog. The analysis below pertains to how doctors respond.
A: Rewards for action
For the most part men in these circumstances are unlikely to present with symptoms that are only ever a feature of recurrence or treatment side effects. It was accepted in our research that many of the problems presented (sexual dysfunction,anxiety and depression) were common in general and therefore subject to the same remuneration as other primary care visits. There were some scenarios that were considered outside the generalist scope of practice including radiation proctitis. However in these circumstances it was also accepted that such patients needed generalist investigations before specialist referral. It was interesting that rural practitioners were more attuned to expert opinion. We speculated that they have greater involvement in supporting men in these circumstances compared to colleagues with much easier access to major hospitals.
We did not explore the time taken by such consultations. However this is likely to be similar to many other such problems that are presenting outwith the context of a cancer diagnosis.
Some scenarios, for example one in which a man presented with a raised level of ‘tumour marker’, proved very problematic for some respondents who immediately, and unnecessarily, referred for specialist advice. The doctor’s fear of missing a recurrence rendered it more challenging for the person living with the diagnosis to receive the strong reassurance that was indicated.
Referral for treatment of problems related to treatment or recurrence may be problematic in these circumstances. For example we could not assume that every practitioner had easy access to a radiation oncologist. This may have resulted in a financial burden on the patient or to referral for less than ideal treatment.
Some consultations required referral to, or discussion with,specialists or the organisation of tests and subsequent follow up with results. Some patients required referral to a very specific service- this was sometimes omitted. Although it is possible this was due to lack of knowledge it is also likely that such services were not available to those practitioners. In the case of practitioners from rural areas this was almost certainly the case.
P: Recognising the patient
In a significant proportion of cases doctors missed the diagnosis. Unfortunately not every practitioner offered the best treatment options. Others focused only on the cancer as a cause of the symptoms. The intervention we offered improved diagnosis but not management of cases.
K: Knowledge of options
It was not clear from our data if doctors were aware of the treatment options for all scenarios in these circumstances.
There is scope to ensure that people are more supported after a diagnosis and treatment of a potentially life threatening condition. They often present with problems that are not unique to those with the condition. Doctors may have to spend more time with them in these circumstances and also need to be more proactive in assessing their needs. In many cases reassurance is all that may be required by a knowledgeable practitioner. In other cases access to the most appropriate treatment will determine the degree to which practitioners can be responsive to needs. Motivation is high, ability could be improved and a trigger that identifies the patient and their options may help to ensure that practitioners fulfill their obligation to support people in these circumstances.
Picture by Andrew Currie.