No abstract

Extensive research results show quality improvements associated with advanced cancer nursing roles. Despite this, these roles are not implemented in many countries. The aim of this cross-sectional, populationbased study was to compare patients' perception of care, before and after the introduction of a new advanced nursing role, the coordination contact nurse (CCN), in a region in Sweden. Method: All patients (with gynaecological, haematological, Head & Neck, upper gastrointestinal cancers) diagnosed in the region the year prior and one-year post introducing the new CCN role were identified from the Swedish Cancer Register. Data were collected using the European Organization of Research and Treatment of Cancer [EORTC] Quality of Life Questionnaire (QLQ-C30 and QLQ-INFO25) and a study specific questionnaire. Result: The results, based on baseline (n = 869) and follow-up data (n = 1003), show statistically significant patient-reported improvements after the introduction of the CCN role, regarding health-related patient information (EORTC QLQ-INFO25 global mean score increased from 41.23 to 44.16, p = 0.0006). We found statistically significant improvements related to availability of supportive care resources, e.g. increased reported access to contact nurse (from 53% to 66%, p ≤ 0.0001) and individual written care plans (from 40% to 54%, p < 0.0001). We also found some improvements related to patient involvement and care coordination, but also room for further developments. Conclusion: The implementation of the new advanced cancer nursing role may have contributed to important improvements, but it has also identified areas in need of development. Further research with long-term evaluations of CCN roles in other contexts, are both needed and ongoing .

The supportive care strategies suggested in Swedish legislation and policy documents may be useful but are only available for some patients. The implementation goals for the National Cancer Strategy and the Swedish Patient act have not been reached.

Background: Cancer care trajectories are often complex, with potent multimodality treatments and multiple interactions with health care providers. Communication and coordination are challenging and the patients' responsibilities to take on more active roles in their own care are increasing.Objective: This study aimed to investigate associations between patient activation level and participation in cancer care, sociodemographic characteristics, clinical data, health-related quality of life (HRQoL) and helpfulness of received information.Methods: In this cross-sectional population-based study, patients completed questionnaires on patient activation, perceived participation, HRQoL, helpfulness of received information and sociodemographic characteristics. Responses to the patient activation measures (PAMs) were classified into four levels (higher levels indicating more activation). Data on age, sex and cancer diagnosis were collected from the Swedish Cancer Register.Results: Data from 682 patients were analysed. On comparing patients at PAM levels 1 and 4, the latter reported significantly higher possibilities to influence care decisions (46.6% vs. 20.8%) and to ask questions regarding treatment and care (93.4% vs. 68.4%). Patients at PAM level 4 reported wanting to influence decisionmaking to a higher extent, compared with patients at other PAM levels, and reported clinically significantly higher HRQoL. No significant differences were found regarding sociodemographic characteristics. Conclusion:We found strong associations between perceived patient participation and activation levels, with limited possibility for participation among those with lower activation levels.