Winter 2016 edition of the EONS Magazine - catch up with the EONS-10 Congress

Can Coordinating Contact Nurses improve the patient experience?

A study in Sweden looks at a new role in cancer care.

The Swedish National Cancer Strategy, from 2009, focuses on the patient’s perspective and equal care for all cancer patients. The cancer care must meet the future patient’s need of information and quality in case management. Therefore the strategy is proposing that every patient should have a contact nurse, an individual written care plan and that a multidisciplinary team should be involved in the care of the patient. 

Bodil Westman

Bodil Westman, CCN Project Manager

The contact nurse and the cancer care plan

The role description for a contact nurse was developed by nurses and patients together in 2011. The role description states that the contact nurse should give reliable information and be a support for patients and family but also that the contact nurse should work for a coherent care trajectory without unnecessary delays.

The written care plan, in Sweden called “My Cancer Care Plan”, is the patient’s document; it is individual and should be written together with the patient. The care plan includes appointments, information regarding treatment and care but also a plan for rehabilitation, based on the patient’s needs and symptoms. “My Cancer Care Plan” should follow the patient from diagnosis to follow up. During the process, the care plan is updated accordingly.

The Stockholm Gotland area includes Stockholm, the capital of Sweden with over two million inhabitants, joined with Gotland, an island with 60,000 inhabitants. An evaluation of the implementation of the new role of contact nurses in Stockholm Gotland area in 2013 showed room for improvements in some areas. Not every patient was offered a contact nurse or a written care plan and the patients also reported that they felt insecure in transitions between health care professions. Some patients reported inadequate continuity and fragmentation in cancer care. A typical cancer patient, in our region, has about 26 transitions between different health care professionals during the care trajectory. They reported long waiting times in the transitions and feelings of “falling through the gaps”.  This caused worry and anxiety.

A new, improved coordinating nursing role

The purpose of this 2.5 year project was to introduce another new nursing role in cancer care, the Coordinating Contact Nurse (CCN) to improve the cancer care processes, from the patient’s perspective.

Coordinating Contact Nurses working on the project

Coordinating Contact Nurses working on the project

A contact nurse is working on a local level in clinics for specialised care, supporting patients during treatment and follow-up. The CCN will work on a regional level throughout the whole care trajectory, with communication between contact nurses and other healthcare providers. The CNNs will also develop and implement new working procedures that include routines for safe handovers within and between different health care providers.

The 10 CCNs in the project are working with the following cancer diagnosis: head-neck, prostate, gynecology, hematology, and upper gastrointestinal cancer. Another CCN is working with the care process for all cancer patients in the remote Gotland area.

Care trajectory

Care trajectory

Here you can see the different stages of the care trajectory and the multiple transitions. The patient, left, receives a contact nurse for each care setting, for example surgery or oncology units.

In order to understand what problems the patients experience and to evaluate the new role of CCN, we collected data from patients diagnosed in 2014 (n=1,283). We used EORTC QLQ C30 and QLQ - INFO 25 and a study specific questionnaire including questions on information exchange, continuity, patient involvement, collaboration and communication. The response rate were 67% (n=869).

The CCNs also interviewed approx. 100 patients, asking them about their experience during the care process and what they thought could be improved. The CNNs also followed the patients during their different care-related appointments, to explore issues related to clinical communication.

Baseline results

In the survey, 45% of the patients reported that they had a contact nurse and only 27% reported that they received a written care plan. In the interviews, the patients reported inadequate communication within and between care providers but also feelings of uncertainty in the care process.

Patient quotes from the interviews.

“I felt so alone. It seemed no one had the responsibility for my care.” (Carl, 55)
“Don’t you know each other? You don’t seem to talk to each other, don´t you have a systematic way of doing that?” (Alice, 36)
“I feel I need to have control over things I don’t know anything about. I’ve never had cancer before. ” (Mary, 67)


Interventions in the project

The baseline data gave us important information and a clearer picture of what areas needed to be improved in the different cancer care trajectories in the region. A number of interventions were designed, tested and will be evaluated within the project. Three of the most important interventions are presented below.

New handover procedures

New routines for safe handover procedures were developed and implemented. This includes handovers between contact nurses in different units/departments but also between cancer care providers in acute specialised and palliative care. One of the most important parts of the new procedure was to actively involve the patient in the process. The new handover model was based on, SBAR (Situation, Background, Assessment and Recommendations), a structured tool for effective patient- health care provider communication.  

Improved implementation of “My Cancer Care Plan”

The CCNs have, together with contact nurses and patient representatives, implemented new routines for when and by whom the care plan should be updated. The CNNs also developed adequate written information materials about treatment and care together with contact nurses, patients and other health-care providers. These information materials are now used in all settings in the region and are available on-line.

Improved team communication

The CCNs have initiated and implemented meeting forums for contact nurses working with the same patient group, giving them the opportunity to interact and share experiences from different care contexts, in order to improve  communication. They meet 3-4 times a year discussing nursing issues related to their roles as contact nurses. The CCNs also initiate and lead multi-professional team meetings in order to improve the care and highlight the issues most relevant for patients


In spring 2017, we will collect follow-up data for the CCN project. Baseline data (patients diagnosed 2014) will be compared with follow-up data (patients diagnosed 2016).

We hope that the comparison will show higher numbers of patients having a contact nurse and a written care plan. We also hope that the CNN role will have contributed to better continuity, communication and care transitions for the included patient groups. If the results show benefits related to the CNN role, the plan is to implement this advanced nursing role more widely in Swedish cancer care.


Bodil Westman, RN, ONS, MSci, project manager and Lena Sharp,  RN, ONS, PhD