Half of breast cancer patients are given “incomplete or incomprehensible” information about their disease, researchers have found.

The study of 1,000 women also found more than half wanted more opportunity to talk to medical staff.

Even if patients were given information if they were stressed they did not fully take it in.

Doctors must improve their communication skills concluded researchers.

Quality of life

In the study, carried out by researchers from the Munich Cancer Registry and the medical clinic at Ludwig Maximilians University, across 50 hospitals, 45% said some aspect of medical staff’s communication was unclear, and 69% wanted more time to speak to staff.

Even though the majority said social and psychological help was important, only a third had contact with a self-help group, psychologist or social worker.

Only half of patients were aware such support was available.

In an assessment of women’s quality of life, scores varied significantly depending on whether they reported clear and unclear communication.

The study looked specifically at women who had arm problems, such as pain or restricted movement, after breast cancer treatment.

It found that in the first year of treatment 47% were particularly dissatisfied with the information they were given and over five years this rose to 60%.

Those given the least information had a worse quality of life.

‘Living in fear’

Dr Jacqueline Kerr, who led the research, said: “If clinicians better appreciated the prevalence and consequences of arm problems they might be encouraged to talk about it more openly with the patient, give more information about prevention and encourage patients to seek early treatment.

“The effect of communication at the time of diagnosis will diminish and quality of life improve over time.

“However, research indicates that some cancer survivors continue to live in fear of recurrence and their needs are not addressed in routine care.”

Age affected how patients felt about communication.

Those under 50 were less satisfied, but those who reported unclear information did not suffer significantly worse quality of life.

Older patients, though less likely to complain about poor communication, were more likely to have a worse quality of life if they were given insufficient information.

The researchers said hospitals had to take this into account when dealing with older patients.

Inexpensive improvements

Dr Jutta Engel, who also worked on the research, said: “This generation may have lower expectations rather than lower needs and perhaps worries about taking up the doctor’s time.”

They said doctors could improve communications with patients by:-

  * Asking “open” questions and listening and empathising more,
  * Recognising when patient is upset and dealing with their concerns,
  * Giving patients a written or audio record of the consultation,
  * Letting them bring a friend or relative who can listen or ask questions,
  * Ensuring they have access to appropriate information afterwards.

Dr Engel said: “Although these findings paint a bleak picture, it is vital to realise that much can be done to rectify the situation.

“In contrast to improvements in treatment, which are costly and slow to develop, information giving is a reasonably cheap intervention with much potential. “

Timing of information

Delyth Morgan, chief executive of Breakthrough Breast Cancer, said: “This study is of real interest to Breakthrough which has recognised for some time the value of good communication, both written and verbal.

“Unfortunately, information about breast cancer at diagnosis and information about the treatment options available are not always communicated well.”

Breakthrough Breast Cancer’s Rights and Realities campaign calls for women to receive timely, accurate and easily understandable information as part of their treatment.

Ms Morgan added: “This study supports Breakthrough’s belief that providing appropriate information at the right time may be a relatively inexpensive process, and can greatly improve the quality of life of those diagnosed with breast cancer.”

The research is published in the journal Annals of Oncology.