Life or death can depend on teenage cancer patients taking their treatments properly
But many do not understand thisTeenagers and young adults with cancer need to understand the implications of not taking their treatments regularly, at the right time, and for the whole course. Those who don't are seriously compromising their future health – and for some it will be the difference between life and death.
Dr Benjamin Gesundheit told the 4th International Conference on Teenage and Young Adult Cancer Medicine today (Thursday 30 March) that more research was needed urgently to investigate why some patients did not comply correctly with their treatments. At the conference, organised by Teenage Cancer Trust, he identified key areas where doctors could make a difference to their patients' compliance, thereby improving their outcome.
Dr Gesundheit, a paediatric oncologist based at Hadassah Hospital of Hebrew University in Jerusalem, and Dr Gideon Koren from the Hospital for Sick Children in Toronto, reviewed the medical literature concerning how and why some teenagers tended to give up on their treatment. They found that for some young people their only concern was with "surviving" the current treatment, rather than long-term survival of the disease itself.
"With today's improved treatments, physicians are treating teenage cancer patients with the aim of curing them, rather than simply buying them some time," he said. "Thus, the implications of poor drug compliance are enormous, and preventing this major factor of therapeutic failure is a paramount challenge. For example, non-compliance with oral chemotherapy may play a role in the long-term prognosis of childhood leukaemia in the relapse rate, and in the graft survival after transplantation.
"Furthermore, physicians tend to overestimate drug compliance, yet non-compliance with therapy is widespread amongst adolescents with cancer, who are at particularly high risk, since their malignancies may have a poorer prognosis than those of younger children. Although the literature we reviewed cited studies carried out mainly in the 1980s and 1990s, we believe from our own experience, and that of our colleagues, that non-compliance is still a major issue."
He explained that non-compliance was not always intentional, with adolescents listing a variety of reasons, including inadequate supply of medication, forgetfulness, misunderstanding of directions on taking the treatment, stopping treatment because symptoms had cleared, or perceived ineffectiveness of treatment, for why they had stopped taking their drugs.
"Adolescents have been described both as 'abusers of non-prescribed drugs' and 'non-users of prescribed drugs'. The challenge for today's clinicians is to identify and then help those teenagers who prefer to dice with death rather than do all they can to survive their cancer," he added.
Currently, pinpointing which teenagers are not taking their treatment properly is done in a number of ways. Patients and their parents can be interviewed, pills counted, drug levels measured in blood and urine, and measurements taken of markers added to drugs.
However, these methods themselves can be fraught with difficulties, with teenagers either making sure they take their medication just before a blood or urine test, or vomiting, spitting out or simply discarding drugs.
Dr Gesundheit and colleagues cite the teenage years as particularly difficult ones in terms of adhering to a strict treatment regime: "Compliance may imply acceptance of and accommodation to a dominant force i.e. the physician dictates and the patient accepts. This is not always an easy concept for a teenager to deal with," he said.
The researchers found a number of factors implicated in situations where adolescents had failed to take their treatment properly. These included: length of time the treatment lasted (with compliance decreasing over time), palatability of the treatment, family support (a dysfunctional family life may be a risk-factor for non-compliance), the teenager's own understanding of the disease, and over-load of information – if patients were given too much information, this tended to have a negative effect.
Dr Gesundheit suggested that the communication skills of both the treating oncologist and the teenager's wider healthcare team were crucial to the success of taking and finishing a course of treatment.
"There are a number of other simple things that could make a huge difference to a teenager grasping the idea that taking his treatment is frankly a matter of life and death," he added. "These include:
- discussing treatment goals with the patient and their family;
- providing regular written information and other reminders such as regular telephone calls;
- inviting the patient and his or her family to share and define their roles within the treatment period;
- addressing the issue of compliance with the teenager and their family, and keeping the issue foremost in the minds of the team looking after the patient;
- ensuring those looking after the patient are positive and encouraging in their attitude."
The researchers also suggested work on the "physician-patient relationship" (PPR) might help. "The quality of the PPR influences adherence with therapy, showing better results with patients who were treated consistently by the same physician than patients treated by different physicians on different occasions. Therefore, the physician should develop his or her skills toward a long-standing dialogue with cancer patients and their families," said Dr Gesundheit.
Last reviewed: By John M. Grohol, Psy.D. on 30 Apr 2016
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