PURPOSE: In Swedish cancer care, Contact Nurses (CNs), have a role to enhance the patients' opportunities for participation through improved communication and information. The aim of this study was to explore how patients describe their opportunities for participation during the first encounter with the CN, prior to starting the cancer treatment.

METHODS: Semi-structured interviews with 14 patients with cancer, planned for curative treatment, were performed. Purposeful sampling, based on estimated high or low activation level measured with PAM-13®, as well as gender and age, were used. The interviews were analysed, using a qualitative inductive approach.

RESULTS: The overarching theme "Dealing with an entirely new life situation" encompass three categories; "Establish relationships", "Gaining understanding of the illness" and "Taking part in treatment planning". The relationships with the CNs as well as the understanding of what was being planned, was considered important. Having the opportunity to communicate essential matters and the adaption of the information, was also found to be of great importance. The perceived possibilities to participate in the planning of treatment and care varied, with some patients describing the plan to be predetermined, while others had a more accommodating experience.

CONCLUSION: The result highlights the importance for CNs of establishing relationships with their patients. It also points out the importance of the patients understanding of their situation. These insights emphasize the need for CNs to prioritize empathic communication, the need to adapt information to the patient's preunderstanding and to actively involve patients in their care planning, enhancing overall patient satisfaction and outcomes.

BACKGROUND AND PURPOSE: Informed consent from trial participants is mandatory. In a randomized clinical trial, we investigated (1) differences in knowledge and understanding of trial information between patients who participated and those who refrained, (2) differences in perceptions of information, and (3) differences in satisfaction with the information.

PATIENTS: After the decision about participation in the randomized study, 'Surgery versus radiotherapy for locally advanced prostate cancer' (SPCG-15), patients were sent questionnaires ('Quality of Informed Consent', EORTC QLQ-INFO25). Patients were categorized in 'Non-participants' or 'Participants'.

RESULTS AND INTERPRETATION: A total of 80 patients (80%) responded, 68% of non-participants and 95% of participants. Between-group differences in knowledge were found for duration of the trial, insurances in the trial, and if the trial intervention had been proven to be superior. Patients had high levels of knowledge (> 80%) regarding the trial aim, that participation implied research, the right to decline, that future patients benefit from research and, of the randomization procedure. Less than 50% responded correctly concerning risks associated with the trial, the unproven nature of the trial and issues about insurances. Non-participants scored lower concerning duration of trial participation, confidentiality of medical records, treatments and procedures in the trial, and experimental nature of treatments. There were no differences regarding satisfaction with information. Non-participants and participants did not differ in satisfaction, or in knowledge and understanding of most aspects of the information. Knowledge levels were low in some areas, and thus, it seems to be room for improvement to fulfill the requirements of informed consent.

PURPOSE: To examine differences in health-related quality of life (HRQoL) between native and foreign-born gynaecological cancer patients in Sweden, taking into account clinical, demographic, and socioeconomic factors.

METHODS: The 30-item European Organisation for Research and Treatment of Cancer quality of life questionnaire (QLQ-C30) and a study-specific questionnaire covering demographic and socioeconomic factors were answered by 684 women aged ≥ 18 years old, diagnosed in 2014, 2016, or 2018 with gynaecological cancer in the Stockholm-Gotland health care region, Sweden. Clinical data were obtained from the Swedish Cancer Register. Data were analysed using the Kruskal-Wallis test and linear regression.

RESULTS: The women had a mean age of 65.4 years, with 555 (81.1%) born in Sweden, 54 (7.9%) in other Nordic countries (ONC), 43 (6.3%) in other European countries (OEC), and 32 (4.7%) in non-European countries (NEC). HRQoL differed significantly between the four groups for 14 of the 15 QLQ-C30 scales/items. On average, Swedish-born women scored 2.0, 15.2, and 16.7 points higher for QoL/functioning scales/items and 2.2, 14.1, and 18.7 points lower for symptom scales/items, compared with ONC-, OEC-, and NEC-born women, respectively. In adjusted analyses, none of the differences between Swedish-born and ONC-born women were significant, while for OEC- and NEC-born women the differences were significant for most QLQ-C30 scales/items.

CONCLUSION: HRQoL differs between native and foreign-born gynaecological cancer patients in Sweden, with lower HRQoL the further from Sweden the women are born. A more individualised cancer care, with tailored support to optimize HRQoL is needed for this vulnerable group of patients.

INTRODUCTION: Telemedicine provides opportunities for access to health care in remote and underserved areas. In parts of northern rural Sweden telemedicine is used to connect a remote physician by a video-conference system to an emergency room, staffed by nurses during on-call hours. This can be called 'tele-emergency'. Patient participation, often described as mutual information exchange, a trustful relationship and involvement in decision-making, is challenged in emergency care by short encounters, deteriorating patients and a stressful work situation. Nevertheless, patient participation may be important for the patients' experience. Healthcare professionals (HCPs) have been identified as 'gatekeepers' for patient participation, therefore putting their perspective in focus is important. As emergency care in rural areas is increasingly turning toward telemedicine, patient participation in tele-emergencies needs to be better understood. The aim of this study was to explore and characterise HCPs' perspectives of patient participation in tele-emergencies in northern rural Sweden.

METHODS: A qualitative design based on interviews was used. HCPs working in cottage hospitals in northern rural Sweden were included. Semi-structured interviews were performed, first, in multidisciplinary groups of three informants. Later, because of limited experience of tele-emergencies in the groups, individual interviews with HCPs with substantial experience were added. A qualitative content analysis of the interview transcripts was conducted.

RESULTS: A total of 44 HCPs from northern inland Sweden participated in the interviews. The content analysis resulted in two themes, six categories and 19 subcategories. Theme 1, 'To see, understand, and to build trust through the digital barrier', contains descriptions of the interpersonal relationship between the patient and the HCPs, and the challenges when interacting with the patient during a tele-emergency. The informants also described a need for boundaries between the professional team and the patient. The categories in theme 1 are 'understanding the patient's point of view', 'building a trustful relationship', and 'needing a private space without the patient'. Theme 2, 'The (im)balance of power - tele-emergency reinforces the positions', mirrors the power asymmetry in the patient-professional relationship, and the potential impact of the tele-emergency on the different roles. Tele-emergencies were described as a risk that potentially could weaken the patient's position, but also as providing an opportunity to share power. Categories in theme 2 are 'medical conditions limit patient participation', 'patient involvement in decision-making requires understanding' and 'the inferior patient and the superior professionals'.

CONCLUSION: This study sheds light on patient participation in tele-emergencies in a remote rural setting from the HCP's perspective. The tele-emergency set-up affected patient participation by interfering with familiar patient-HCP relationships and changing group dynamics in interactions with the patient. Due to the extensive changes of the conditions for patient participation imposed in tele-emergencies, suggestions for actions improving patient participation are made.

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 decision-making 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.

PATIENT OR PUBLIC CONTRIBUTION: Discussions with patient representatives have raised the importance of participation. The preliminary findings were presented and discussed in a workshop with representatives from 21 cancer patient advocacy groups.

PURPOSE: Time for preoperative optimisation prior to colorectal cancer surgery is limited and older people tend to decline exercise interventions. This study sought to describe attitudes towards, and perceptions of, preoperative physical activity and exercise in older people prior to colorectal cancer surgery.

METHODS: This is a qualitative interview study, analysed with inductive content analysis. Seventeen participants scheduled for colorectal surgery were recruited as a purposeful sample from two hospitals in Stockholm, Sweden. Individual semi-structured interviews were conducted, face-to-face (n = 8) or by telephone (n = 9).

RESULTS: Nine participants were male, median age was 75 years (range 70-91). The theme, 'a gap between awareness and action', was identified based on two main categories: 'Attitudes towards preoperative physical exercise have a multifactorial base' and 'Preoperative physical exercise is possible with a push in the right direction'. The material described a gap between awareness of the benefits of physical activity and reports of performing physical activity. The reasons for the gap between thoughts and action in this respect seem to be multifactorial. Support from others emerged as an important possibility for overcoming the gap.

CONCLUSIONS: A gap between the patients' awareness and action appeared in our material. Understanding this can guide healthcare professionals (HCPs) as to the support needed preoperatively. Advice on physical exercise before surgery should be specific, and individually tailored support for action should be offered. This support should also consider the individual's current physical activity and preoperative attitude towards physical exercise.