No One Should Have to Face Cancer Alone

More than 37,000 Danes were diagnosed with cancer last year and approximately 285,000 Danes are cancer survivors. The Danish Cancer Society offers professional information and counselling as well as activities for people affected by cancer. Last year, the national cancer information and support (CIS) service ‘Kræftlinjen’ received more than 14,000 inquiries, the majority from patients, relatives and bereaved.

User surveys

In order to ensure the quality of our services, user surveys are performed on a regular basis. Since users of our CIS service in general are anonymous, the surveys are usually conducted in conjunction with the contact to the helpline. Thus, they only capture the users’ experiences with and short-term effects of the contact. In order to investigate the long-term effects, focusing on the users’ perception of their situation after the contact including their perceived changes in behavior and their ability to communicate with others about the disease, a follow-up survey was conducted as a supplement to the latest user survey.

Methods

In March-April 2017, users of the CIS service were encouraged to answer a questionnaire about their experiences when using the telephone. The questionnaire was sent by either e-mail or mail. In total, 461 users participated in this survey. 226 users (49%) agreed to receive a short follow-up questionnaire three months after their initial contact with the CIS. 136 users (60%) participated in this follow-up survey. The second questionnaire took inspiration from an international qualitative study performed in 2015-16, which set out to study the impact of using CIS services in Australia, the UK and USA.

 Results from the follow-up survey
A majority of the respondents reported that their conversation with the CIS service had led to changes in their perception of their situation (77%) and made them better at coping with their situation (79%). As an example, some participants described that the conversation made them more calm and able to accept their situation, which again led them to feel less stressed and anxious. In addition, many users stated that they had become more able to communicate with others about their disease (66%) and that the contact had let to changes in their behavior (63%). Some participants described to have contacted the hospital or their doctor after their contact with the helpline and some described that they had become better at asking health personnel questions about the disease. Others had become more aware of their rights and of looking out for themselves or others. Most participants (77%) stated that they had not felt a need to contact the helpline again.

Conclusion

Previous surveys of our CIS service show positive evaluations when users are asked immediately after contacting the service. To our satisfaction, the findings of this survey suggest that giving information and counselling on cancer related issues through telephone, also has an impact on the long run. For instance, users reported that their perception and ability to communicate and cope with their situation had improved, and they experienced a reduction in their level of stress and anxiety.

Contributed by Chris Donkin, Danish Cancer Society