Differences in health-related quality of life between native and foreign-born gynaecological cancer patients in Sweden: a five-year cross-sectional study.

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.

Patient participation in tele-emergencies - experiences from healthcare professionals in northern rural Sweden.

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.

Patients with low activation level report limited possibilities to participate in cancer care.

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.

Patient participation in gastrointestinal endoscopy - From patients' perspectives.

BACKGROUND: Patient participation is associated with satisfaction and improved health-related outcomes. In gastrointestinal endoscopy, patient participation is an underexplored area. OBJECTIVE: To gain understanding on patients' experiences, attitudes and preferences concerning patient participation in the endoscopy pathway. METHODS: Semi-structured interviews with endoscopy patients (n = 17, female n = 8, male n = 9, ages 19-80 years) were performed. Interview transcripts were analysed using qualitative content analysis. Participants were recruited by purposive sampling from an endoscopy unit in a Swedish university hospital. Inclusion:≥ 18 years, fluency in Swedish and recent experience of endoscopy at the unit. RESULTS: Five generic categories emerged, two within the area of the patient's role, which was described as active or passive/included or excluded. Another three generic categories related to factors, critical to active participation, including organizational aspects, impressions of staff and individual circumstances were identified. In this context, patient participation described in the interviews was on a low to basic level, although sometimes reaching a higher level when staff 'invited' patients in decision making. DISCUSSION: This study contributes to the understanding of patient participation in endoscopy. Patients are in an inferior position and need support from the staff for an active role in their care. Although there were variations on the perceived importance of different factors, a heavy responsibility lies on the endoscopy staff to acknowledge the patients' individual needs and to facilitate patient participation. CONCLUSIONS: Endoscopy staff has a key role in supporting patient participation. In endoscopy settings, patient participation is vulnerable to multiple factors.

Older patients' attitudes towards, and perceptions of, preoperative physical activity and exercise prior to colorectal cancer surgery-a gap between awareness and action.

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.

Improved patient satisfaction 2 years after introducing person-centred handover in an oncological inpatient care setting.

AIMS AND OBJECTIVES: To investigate patients' satisfaction with care, 2 years after the introduction of person-centred handover (PCH) in an oncological inpatient setting, and to describe patients' perceptions of individualised care. BACKGROUND: To obtain higher levels of patient satisfaction, bedside nursing handovers have been evaluated with positive results. One such model is PCH, which blends aspects of person-centred care with the bedside report and provides the opportunity for nursing staff and patients to perform the handover together. DESIGN: A survey-based design was used with one data collection period. Patient satisfaction scores were compared with baseline data from a previous study that has been conducted in the same wards. METHOD: Patient satisfaction was measured with the EORTC IN-PATSAT32 questionnaire, and individualised care was assessed with the Individualized Care Scale. A total of 120 adult patients with cancer were invited to participate from August 2017-March 2018. Of these, 90 chose to participate. The STROBE checklist for cross-sectional studies was used when preparing the paper. RESULTS: Compared to the previous study, statistically significant improvements in patient satisfaction were observed in the subscales "Exchange of information between caregivers" and "Nurses' information provision" postimplementation of PCH. Regarding patients' perceptions of individualised care, the highest scores were in the ICS-A subscale "Clinical situation" and ICS-B "Decisional control," while "Personal life situation" scored the lowest overall. CONCLUSIONS: Person-centred handover seems to have sustainable positive effects on important outcomes regarding patient satisfaction. A novel finding is the positive impact on nurses' information provision, indicating that PCH can facilitate effective information exchange between patients and nurses. RELEVANCE TO CLINICAL PRACTICE: Person-centred handover seems to improve patients' satisfaction with nurses' provision and exchange of information. Nurses and managers should carefully consider the implementation process of PCH and evaluate its long-term effects. PCH can be recommended in the oncology inpatient setting.

Observations of nursing staff compliance to a checklist for person-centred handovers - a quality improvement project.

Nursing shift-to-shift handovers are important as they impact the care quality indicators such as safety, patient satisfaction and continuity. However, nurses' handovers have also been criticised and described as unstructured and ineffective. To improve the handovers and involve patients and their loved ones in the process, a person-centred handover (PCH) model performed at bedside has been developed and tested at Karolinska University Hospital, Sweden. This study reports on the nursing staffs' compliance to a checklist used for the newly introduced PCH model. A total of 43 PCH sessions were observed at two acute care wards, using a structured observation protocol. None of the observed handover sessions included all the 13 PCH checklist subcomponents. The checklist was used in 18 (44%) of the observed handover sessions. A statistically significant higher number of subcomponents were observed when the nurses used the PCH checklist (6.4 vs. 4.5 subcomponents, p < 0.05). The mean time spent on each PCH was 6 minutes. In 56% of the sessions, the patients were observed to actively participate in the handover. Overall, the nursing staffs' compliance to the PCH checklist needs to be improved. The observations suggest that training on communication-oriented tasks would be beneficial to establish a person-centred handover process.

Short-term postoperative physical decline and patient-reported recovery in people aged 70 or older undergoing abdominal cancer resection- A prospective cohort study.

OBJECTIVES: Extensive physical deterioration as a consequence of both cancer and surgical treatment can lead to increased care needs and decreased well-being. Information on short-term physical decline and patient-reported recovery in older patients undergoing abdominal cancer surgery is still sparse. We aimed to describe the short-term changes and study the associations between preoperative physical performance and postoperative mobility, as well as patient-reported recovery in this patient group. MATERIALS AND METHODS: Patients ≥70 years of age waiting for abdominal cancer surgery were included in a prospective cohort study. Physical performance tests were conducted preoperatively and on hospital discharge. Changes from baseline to postoperative values were described, logistic regressions were performed to explore the association between preoperative physical performance and postoperative mobility, and ordinal regression for the association between physical decline and patient-reported recovery. RESULTS: One-hundred forty individuals (mean age 76.0 ±â€¯4.6 years) were included in the analyses. We found the greatest declines in functional leg strength (38%) and walking distance (33%). Twenty participants (15%) were unable to rise from a chair without support on discharge. In the multivariable analyses, better preoperative physical performance was associated with lower odds of limited mobility on discharge. A larger decline in gait speed was associated with greater odds of reporting lower postoperative recovery. CONCLUSIONS: This study adds information regarding the magnitude of short-term physical decline and factors associated with postoperative mobility. It may be important to improve functional leg strength and physical capacity through exercise prior to abdominal cancer surgery to reduce postoperative physical decline.

Better preoperative physical performance reduces the odds of complication severity and discharge to care facility after abdominal cancer resection in people over the age of 70 - A prospective cohort study.

INTRODUCTION: Reduced functional reserve in older people, combined with the surgical stress, may increase the likelihood of adverse postoperative outcomes. The objective of this study was to examine the associations between preoperative physical performance and severity of postoperative complications, length of stay (LoS), and discharge destination in older people after abdominal cancer surgery. METHODS: Between December 2015 and December 2017, a prospective cohort study examined 197 individuals ≥ 70 years of age awaiting abdominal cancer surgery. Measures of physical performance (walking distance, functional leg strength, grip strength, inspiratory muscle strength, gait speed) and self-reported physical activity were conducted preoperatively, and postoperative outcomes were collected within 30 days of surgery. RESULTS: Fifty-four percent experienced at least one postoperative complication at 30-day follow-up, including 10% with severe complications. In the multivariable analysis, better walking distance, functional leg strength, grip strength, inspiratory muscle strength, and gait speed were associated with reduced odds of higher complication severity. Better preoperative inspiratory muscle strength was associated with shorter LoS in hospital, and better preoperative physical activity level, walking distance, grip strength, and maximal walking speed reduced the odds of being postoperatively discharged to further care rather than to home. CONCLUSION: The results emphasize the importance of acknowledging the physical fitness of the older individual rather than chronological age. Objectively measured physical performance is an important addition to conventional risk assessments in preoperative care. This will help to identify patients at high risk and in need of an alternative preoperative pathway, which might include personalized preoperative exercise.

Nurse perceptions of person-centered handovers in the oncological inpatient setting: A qualitative study.

BACKGROUND: Deficient communication during shift change can cause negative patient outcomes and hinder person-centeredness in care. Person-centered handover is performed together with the patient at bedside, with the intention of providing a safe and efficient handover while promoting patient participation. The knowledge about nurse perspectives on handover models that involve patient participation is sparse. OBJECTIVE: To describe registered nurses' perceptions of person-centered handover in an oncological inpatient setting. DESIGN: A qualitative interview study. SETTING: The study was undertaken at two oncological inpatient wards at the Karolinska University Hospital, Stockholm, where person-centered handover was implemented in 2015. PARTICIPANTS: Registered nurses who had worked at the wards for at least six months. We aimed for a full sample investigation. All eligible nurses (n = 13) were approached, and 11 chose to participate. Participants' age ranged from 23 to 60 years, the mean work experience was 10 years, and 4 out of 11 nurses were oncology nurse specialists. METHODS: Semi-structured interviews were performed by an independent researcher. The data was analyzed using content analysis with an inductive approach. RESULTS: Three main themes with ten subsequent subthemes emerged from the data. The main themes were: clinical communication and assessment; opportunity for patient participation; consequences for nursing care. In general, the nurses were positive towards person-centered handover, but they expressed concerns regarding patients' integrity and insecurities regarding bedside communication. All nurses described how they aimed at enhancing patient participation and viewed person-centered handover as an opportunity, but still perceived it difficult to succeed due to drawbacks and factors hindering nursing care. Overall, the nurses were positive regarding the involvement of patients in the handover procedure. Information provision from nurse to patient, as opposed to information exchange, was predominant. CONCLUSIONS: The intentions of person-centered handovers differed from the way it was actually performed, especially in regards to the obtained levels of patient participation, as described by nurses. Professional insecurity in relation to bedside communication with patients and their visitors is a novel finding that should be considered when implementing person-centered handovers. Overall, the perceptions of person-centered handovers, as expressed by the nurses, enhance our understanding of what to consider when implementing the model and why compliance may vary.

Patient satisfaction after implementation of person-centred handover in oncological inpatient care - A cross-sectional study.

Effective nurse shift-to-shift handover is a prerequisite for high-quality inpatient care. Combining person-centeredness with the need for improved handover rituals, we introduced and evaluated person-centered handover (PCH) in an oncological inpatient setting. PCH is the shift-to-shift nursing report performed together with the patient according to a set structure focused on patient participation, relevant clinical information, and patient safety. Non-verbal handover, standard at the department, is conducted via the electronic health record, in absence of the patient, and without a set structure. The aim of the study was to compare person-centered handover with non-verbal handover in an oncological inpatient setting with regard to patient satisfaction. A cross-sectional design featuring two points of measurement at one intervention ward and two control wards was applied. The EORTC IN-PATSAT32 questionnaire was used for measuring patient satisfaction. Baseline measurements were taken during the spring of 2014, when all three wards used a non-verbal handover model, and included responses from 116 patients. Follow-up measurements (comparing PCH and non-verbal handover) involved 209 patients and were on-going from September 2014 to May 2015. After the introduction of PCH, one change in patient satisfaction was detected regarding the subscale measuring exchange of information between caregivers. Patients from the intervention ward scored statistically higher after the implementation of PCH when compared to the control wards (p = .0058). The difference remained after a multivariate regression analysis controlling for clinical variables. In conclusion, PCH is feasible in oncological inpatient care but does not seem to affect patient satisfaction.

Person-centered endoscopy safety checklist: Development, implementation, and evaluation.

AIM: To describe the development and implementation of a person-centered endoscopy safety checklist and to evaluate the effects of a "checklist intervention". METHODS: The checklist, based on previously published safety checklists, was developed and locally adapted, taking patient safety aspects into consideration and using a person-centered approach. This novel checklist was introduced to the staff of an endoscopy unit at a Stockholm University Hospital during half-day seminars and team training sessions. Structured observations of the endoscopy team's performance were conducted before and after the introduction of the checklist. In addition, questionnaires focusing on patient participation, collaboration climate, and patient safety issues were collected from patients and staff. RESULTS: A person-centered safety checklist was developed and introduced by a multi-professional group in the endoscopy unit. A statistically significant increase in accurate patient identity verification by the physicians was noted (from 0% at baseline to 87% after 10 mo, P < 0.001), and remained high among nurses (93% at baseline vs 96% after 10 mo, P = nonsignificant). Observations indicated that the professional staff made frequent attempts to use the checklist, but compliance was suboptimal: All items in the observed nurse-led "summaries" were included in 56% of these interactions, and physicians participated by directly facing the patient in 50% of the interactions. On the questionnaires administered to the staff, items regarding collaboration and the importance of patient participation were rated more highly after the introduction of the checklist, but this did not result in statistical significance (P = 0.07/P = 0.08). The patients rated almost all items as very high both before and after the introduction of the checklist; hence, no statistical difference was noted. CONCLUSION: The intervention led to increased patient identity verification by physicians - a patient safety improvement. Clear evidence of enhanced person-centeredness or team work was not found.

Higher sexual interest with androgen receptor inhibitor monotherapy than with castration plus an androgen receptor inhibitor in prostate cancer patients treated with curative radiotherapy, but otherwise small health-related quality of life differences: A randomised prospective 18-month follow-up study.

PURPOSE: To prospectively study differences in health-related quality of life (HRQoL) in patients with localised/locally advanced prostate cancer (PC) treated with curative intended radiation therapy and randomised to androgen receptor inhibitor monotherapy treatment versus castration plus an androgen receptor inhibitor used continuously. Time to Prostate Specific Antigen (PSA) relapse, time to symptomatic metastasis and overall survival (OS) were also described for the two groups. PATIENTS AND METHODS: From 2005 to 2011, a total of 110 patients were randomised at a ratio of 1:1. HRQoL was assessed at six time points: before randomisation, before radiotherapy (RT) start and 9, 12, 15 and 18 months after randomisation, using the European Organization for Research and Treatment of Cancer Quality of Life Core Questionnaire (EORTC QLQ-C30) and EORTC QLQ-PR25. RESULTS: At the 3-month follow-up, statistically significant differences between the two groups were found for overall quality of life (p = 0.006), fatigue (p = 0.023), sexual interest (p < 0.001) and urinary problems (p = 0.036). Small clinical differences were noted for overall quality of life, role functioning, fatigue, pain, sleeping problems and urinary problems. At that assessment point, clinical differences between the groups were substantial regarding sexual interest and moderate regarding sexual functioning (the latter indicated only by patients reporting having sexual interest at baseline). All statistical and clinical differences favoured the androgen receptor inhibitor monotherapy arm. At 18 months after randomisation, statistically significant differences were found for cognitive functioning (p = 0.040) and sexual interest (p = 0.011), both favouring the androgen receptor inhibitor monotherapy arm. CONCLUSION: The results suggest that neo-adjuvant androgen receptor inhibitor monotherapy might be preferred compared to castration plus an androgen receptor inhibitor before curative intended RT in men with localised/locally advanced PC, with higher levels of HRQoL, especially concerning sexual interest. HRQoL differences over time were small. The observation time and study sample were too small for evaluating time to PSA progression and OS. Further studies are needed to confirm the results. The study was registered in, identification number NCT02382094.

International field testing of the psychometric properties of an EORTC quality of life module for oral health: the EORTC QLQ-OH15.

PURPOSE: This international EORTC validation study (phase IV) is aimed at testing the psychometric properties of a quality of life (QoL) module related to oral health problems in cancer patients. METHODS: The phase III module comprised 17 items with four hypothesized multi-item scales and three single items. In phase IV, patients with mixed cancers, in different treatment phases from 10 countries completed the EORTC QLQ-C30, the QLQ-OH module, and a debriefing interview. The hypothesized structure was tested using combinations of classical test theory and item response theory, following EORTC guidelines. Test-retest assessments and responsiveness to change analysis (RCA) were performed after 2 weeks. RESULTS: Five hundred seventy-two patients (median age 60.3, 54 % females) were analyzed. Completion took <10 min for 84 %, 40 % expressed satisfaction that these issues were addressed. Analyses suggested a revision of the phase III hypothesized scale structure. Two items were deleted based on a high degree of item misfit, together with negative patient feedback. The remaining 15 items formed one eight-item scale named OH-QoL score, a two-item information scale, a two-item scale regarding dentures, and three single items (sticky saliva/mouth soreness/sensitivity to food/drink). Face and convergent validity and internal consistency were confirmed. Test-retest reliability (n = 60) was demonstrated as was RCA for patients undergoing chemotherapy (n = 117; p = 0.06). The resulting QLQ-OH15 discriminated between clinically distinct patient groups, e.g., low performance status vs. higher (p < 000.1), and head-and-neck cancer versus other cancers (p < 0.03). CONCLUSION: The EORTC module QLQ-OH15 is a short, well-accepted assessment tool focusing on oral problems and QoL to improve clinical management. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT01724333.

Changed nursing scheduling for improved safety culture and working conditions - patients' and nurses' perspectives.

AIM: To evaluate fixed scheduling compared with self-scheduling for nursing staff in oncological inpatient care with regard to patient and staff outcomes. BACKGROUND: Various scheduling models have been tested to attract and retain nursing staff. Little is known about how these schedules affect staff and patients. Fixed scheduling and self-scheduling have been studied to a small extent, solely from a staff perspective. METHOD: We implemented fixed scheduling on two of four oncological inpatient wards. Two wards kept self-scheduling. Through a quasi-experimental design, baseline and follow-up measurements were collected among staff and patients. The Safety Attitudes Questionnaire was used among staff, as well as study-specific questions for patients and staff. RESULTS: Fixed scheduling was associated with less overtime and fewer possibilities to change shifts. Self-scheduling was associated with more requests from management for short notice shift changes. The type of scheduling did not affect patient-reported outcomes. CONCLUSIONS: Fixed scheduling should be considered in order to lower overtime. Further research is necessary and should explore patient outcomes to a greater extent. IMPLICATIONS FOR NURSING MANAGEMENT: Scheduling is a core task for nurse managers. Our study suggests fixed scheduling as a strategy for managers to improve the effective use of resources and safety.

Patients' knowledge and perceived understanding - Associations with consenting to participate in cancer clinical trials.

Recruitment to clinical trials is essential. The aims of the study were to investigate associations between patients' informed consent to participate in a cancer clinical trial and knowledge and perceived understanding of the trial. Furthermore, associations between demographic factors and consent to participate and knowledge and perceived understanding of information about the trial were studied. METHODS: The patients were recruited in connection to a visit at the oncology clinic for information about a drug trial. The Quality of Informed Consent questionnaire was mailed to the patients after they had decided about participation in the trial. The associations of demographic factors and "knowledge" and "perceived understanding" were analysed using linear regression models. RESULTS: A total of 125 patients were included. Higher levels of "knowledge" and "understanding" were found to be associated with consent to participate in a clinical trial, both in the univariate and multivariate analyses (p = 0.001). None of the tested demographic factors were related to consent to participate. No statistically significant associations between any of the demographic factors and knowledge or perceived understanding scores were found. CONCLUSION: The results indicate that interventions that increase patients' knowledge and perceived understanding might improve participation rates in clinical trials.

Nurse-led outpatient clinics in oncology care - Patient satisfaction, information and continuity of care.

PURPOSE: The aims of the present study were to investigate patients' satisfaction with nurse-led clinics, patients' perception of received information and associations between continuity of care and satisfaction with information. METHODS: Questionnaires on patient satisfaction were sent to consecutive samples of patients after they attended a nurse-led clinic at the Department of Oncology, Karolinska University Hospital in 2007, 2009, 2011 and 2013. Patients' perceptions of received information were evaluated in 2011 and 2013, by the EORTC QLQ-INFO25. Data on registered continuity of care were retrieved from the patients' medical record. RESULTS: A total of 962 patients responded (79%) to one of the four surveys. Patients' satisfaction with nurse-led clinics was stable over time. More than 90% rated nurses' interpersonal manners and the care at the clinic as "good", the waiting time as "acceptable", and the length of appointments as "sufficient". Over 90% responded that it was important to meet the same nurse and 62% reported they actually did so and 52% stated they were assigned a named nurse navigator. More than 75% rated the information at their latest visit at a nurse-led clinic as "completely" sufficient. However, 48% expressed wish for more information "during the current disease". No statistical significant associations were found between "satisfaction with information" and continuity of care. CONCLUSIONS: Patients' satisfaction with nurse-led clinics was stable over time with generally high figures with the exception for continuity of care and information, areas in which improvements are needed. The wide variety in information needs might require a person-centred approach.

Cross-cultural development of a quality-of-life measure for patients with melanoma: phase 3 testing of an EORTC Melanoma Module.

Melanoma is an increasingly common skin cancer worldwide. Recent treatment advances have provided patients and healthcare professionals (HCPs) with choices where quality of life (QoL) and toxicity are important considerations. A melanoma-specific QoL questionnaire is being developed in a cross-cultural setting using a four phase process developed by the European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group. In phase 1, a literature search identified a list of pertinent QoL issues; this was shown to HCPs and patients in eight countries and rated for importance and relevance. Questions were constructed for the highest-rated issues (phase 2) and piloted in another patient sample (phase 3). Using EORTC Quality of Life Group criteria and sequential use of factor and Rasch analysis, scales were hypothesized for field testing (phase 4). Seven QoL domains (disease symptoms, treatment issues, financial issues, access/quality of information, satisfaction with care, psychosocial issues and support), comprising 73 QoL issues, were rated by 46 HCPs and 78 patients. Fifty-six issues were rephrased as questions and piloted with 132 patients. A 38-item questionnaire (QLQ-MEL38) is available for field testing in conjunction with the EORTC QLQ-C30. This study has shown that melanoma patients have important QoL issues that have been incorporated into a new cross-culturally validated instrument. Future testing of this EORTC module is planned and will be an important step forward in providing reliable QoL data to aid future decision-making in the management and clinical trials of this complex group of patients.

Information exchange in oncological inpatient care--patient satisfaction, participation, and safety.

PURPOSE: This prospective pilot study aimed to investigate patients' perception of information exchange and its associations with patient satisfaction, participation and safety at inpatient oncology wards. METHODS AND SAMPLE: Consecutive patients with cancer who spent ≥3 days at an oncological inpatient ward at the Department of Oncology, Karolinska University Hospital during the study period (March-August 2013) were invited to respond to EORTC-INPATSAT32 measuring patient satisfaction and a study specific questionnaire. Data on changes in medication and fall risk assessments was collected from the patients' electronic health records. KEY RESULTS: A total of 104 patients (58%) participated in the study. Patients rated doctors' and nurses' information provision lower than their technical and interpersonal skills, and 13% considered the information exchange "excellent". Changes in medication were registered for 83% of participating patients, which 56% of the patients were aware of. Fall risk assessment was registered for 73% of responding patients, and 39% reported having discussed risk of falling during the hospital stay. The Downton Fall Risk Index scores were not associated with actual falls or fall prevention actions. CONCLUSIONS: Deficits were found on information exchange and information provision between health care professionals and patients. This might have a negative impact on known patient safety risks such as medication errors and falls. More effective strategies to perform fall risk assessments in an oncological inpatient setting are needed. Further studies evaluating interventions to improve participation and information exchange are necessary to increase patient satisfaction, participation and safety in oncological inpatient care.