Fast‐track programmes are aimed at improving perioperative care. The purpose of this study was to identify and explore patient participation among patients who had surgery for liver, bile duct or pancreatic cancer and followed a fast‐track programme. A total of 116 questionnaires to investigate patient participation were analysed. Information was important for the patients, as was having the opportunity to ask questions and express personal views. The results showed differences by sex; men responded to a greater extent that they did not want to make decisions as a patient (p = 0.044) and that they had been motivated to take more responsibility for their future health (p = 0.011). Patients with pancreatic cancer discussed treatment goals with doctors to a greater extent than did patients with liver cancer (p = 0.041). Half of the patients perceived that they had not been involved in their care planning after discharge but had a desired to be involved. This seems to be an important point to improve in future care, and also that professionals should be aware of patients’ needs for information and participation, especially at discharge.

Background: Oxaliplatin (OXA) is frequently used in the treatment of patients with colorectal cancer (CRC) and OXA-induced neurotoxic side effects is common. Real time patient-reported neurotoxic side effects and impact on the patient's daily activities, are sparse in existing studies. Objective: This study aimed to identify and assess patient-reported OXA-induced neurotoxic side effects and their impact on the patient's daily activities, during and after chemotherapy. Methods: In a multicentre prospective longitudinal study, 46 chemo naïve patients with CRC treated with postoperative adjuvant OXA-based chemotherapy were monitored during treatment and at 3-, 6-, 9-and 12-month follow-ups. Patients were recruited from September 2013 to June 2016. In total, 370 OANQ (Oxaliplatin-Associated Neurotoxicity Questionnaire) responses were available for analysis. A mobile phone-based system was used to receive real time assessments. Results: All patients reported neurotoxic side effects and impact on daily activities during treatment. The side effects changed in character and body location over time, and had an impact on the daily activities. Conclusions: The high prevalence of OXA-induced neurotoxic side effects significantly interfered with the patients' daily activities. We found significant differences between baseline data and follow-up time points for neurotoxicity, and the patients had not returned to baseline after one year.

Patient involvement in surgical care-Healthcare personnel views and behaviour regarding patient involvement Background: All professions in surgical care have a responsibility to include patients in their health care. By Swedish law, all care should be done in dialogue with the patient. The essential part of health care is the meeting between patient and healthcare professional. In the interaction, a decision can be made, and needs can be identified to a safer care. Previous studies on patient participation have focussed on patients' perspectives in surgical care, but there is a paucity of studies about the personnel's perspective of estimated patient involvement in surgical care. Aim: The aim of this study was to identify and describe healthcare personnel's view and behaviour regarding patient involvement in surgical care. Method: A quantitative study with various professions was conducted. A validated questionnaire was used, remaining questions grouped under following areas: patient involvement, acute phase, hospital time, discharge phase and questions on employment and workplace. Results: A total of 140 questionnaires were sent out to a surgical clinic in Sweden, and 102 questionnaires were answered. All professionals stated that clear information is an important part of patient involvement in surgical care. Statistically significant differences existed between the professions in the subscale information. Physicians rated their information higher than the Registered Nurses (p = 0.005) and the practical nurses did (p = 0.001). Hindrances to involving patients were lack of time and other priority tasks. Conclusions: Professionals in surgical care graded information to be the most important thing for patient involvement. Participation in important decisions, including the possibility to express personal views and ask questions, is important factors for patient involvement. Barriers against patient involvement are lack of time and prioritisation of other work activities.

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Patient participation is highly important for numerous reasons (World Health Organization, 2013); for example, it is associated with improved recovery, treatment outcomes, and rehabilitation (Arnetz et al., 2004), as well as increased motivation, better treatment outcomes, and greater satisfaction with the given care (Vahdat et al., 2014). Many countries, including Sweden, encourage patient participation by means of legislations and standards (Nolte et al., 2020). Yet, even if patient participation is advocated

Health-related quality of life (HRQL) was evaluated in 94 patients undergoing allogeneic haematopoietic stem cell transplantation (HSCT) after myeloablative (MAC, n = 18) or reduced intensity conditioning (RIC, n = 76). HRQL was assessed with the EORTC QLQ C-30 during the inpatient period as well as during the following 3 years, i.e. at baseline and 12 times thereafter. Functional status and global quality of life decreased from baseline to weeks 2 and 3, especially role and social functions. Symptoms increased significantly during the first 3 weeks, particularly appetite loss, nausea and vomiting, diarrhoea and fatigue. It took at least 1 year for HRQL to return to the baseline level. The only function that improved significantly 3 years after HSCT was role function. Patients treated with MAC experienced significantly worse HRQL at baseline than patients treated with RIC, as well as more pain, sleep disturbance and appetite loss in weeks 3 and 4. Patients with extensive chronic graft-versus-host disease experienced reduced HRQL. These results provide a clinically useful overview of patients' HRQL during and after HSCT and indicate when they require increased support. The results demonstrate the importance of close follow-ups during the first year after HSCT to improve preventive or supportive interventions.Keywords: quality of life, symptom, stem cell transplantation. Diaconescu et al. 2004). In the late 1990s, reduced intensity conditioning (RIC) was introduced and developed (Bacigalupo et al. 2009;Cremer et al. 2011) with the main purpose of reducing toxicity to allow older people and those with compromised health to benefit from HSCT (Juliusson et al. 2006;Gyurkocza & Sandmaier 2014). Choice of the MAC or RIC is primarily influenced by various risk factors, for example the stage of the disease and age (Ljungman et al. 2010). It is important to evaluate factors other than treatment response and survival when the treatment strategy is changed. Irrespective of treatment strategy, HSCT has a strong impact on patients' health-related quality of life (HRQL; Larsen et al. 2004;Bevans et al. 2008), with a high risk of different complications, such as graft-versus-host disease (GvHD;Pallua et al. 2010;Braamse et al. 2012).GvHDis a common complication after allogeneic HSCT and is caused by several factors that trigger the activation of donor T cells. The risk of developing acute GvHD is 30-50% for patients with a related donor and may be higher with an unrelated donor (Bhatia et al. 2007; Apperley&Masszi 2012). The risk is graded from1 to 4, where 1 ismild GvHD and 4 is a life-threatening condition involving all three organs (Skin, gut and liver). ChronicGvHDnormally occurs 100 days afterHSCT. Chronic GvHD affects significantly more organs than acute GvHD and is divided into limited and extensive chronic GvHD, depending on the number of organs involved and the severity of the attack on the affected organs (Apperley&Masszi 2012). This study started in 2001 when RIC was introduced at our department. At that time, none...

Objective: In the present study, we aimed to assess sense of coherence (SOC) andhealth-related quality of life (HRQOL) during and after adjuvant chemotherapy by mobile phone-based reporting in patients with colorectal cancer experiencing neurotoxicity. Methods:In this prospective descriptive cohort study, a mobile phone-based system was used to receive a series of real-time longitudinal patient-reported assessments of SOC (13-item), HRQOL (Functional Assessment of Cancer Therapy-General (FACT-G) 27-item), and neurotoxicity (OANQ 29-item) from 43 patients with colorectal cancer after being treated with chemotherapy including oxaliplatin. Measurements were conducted during the whole treatment period (mean 5 cycles) and up to 12 months after completing chemotherapy. Results:In total, 817 questionnaire responses (226 SOC, 221 FACT-G, 370 OANQ) answered during and after chemotherapy treatment were available for analysis. Even though all patients experienced neurotoxicity during the treatment period, HRQOL was stable over time. Over time, the ratings of physical wellbeing tended to increase, while the subscale of social wellbeing tended to decrease. Overall SOC, including the three components comprehensibility, manageability, and meaningfulness was stable during the entire study period. No internal data was missing due to the mobile phone-based system. Conclusions: All patients had neurotoxicity during the treatment period that seemed to affect the social wellbeing component of HRQOL, but SOC seemed unaffected. Real-time patient-reported assessment using mobile phone technology could be valuable in the clinical setting to provide continuous individualised monitoring to help identify patients who need further evaluation to maintain or improve their psychosocial health. Occupation Type of cancer location, n (%)Colon 38 (88) Rectum 5 (12) Chemotherapy, n (%) FOLFOX 2 6 (14) CAPOX 3 37 (86) Oxaliplatin mg (total dose) mean, (range) 918, (120-1680) 1 Sex distribution in follow-up male/female; 3 months (55 %/45 %), 6 months (50 %/50 %), 9 months (40 %/60 %) and 12 months (46 %/54 %). 2 Fluorouracil + leucovorin + oxaliplatin. 3 Capecitabine + oxaliplatin. 4Dose reduction was applied to all patients at some point, mean 5 OXAtreatments.