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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.

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

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.

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.

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.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.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.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.

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.

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 ± 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.

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.

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.

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 eAugust 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.

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.

Advances in cancer care delivery require revision and further development of questionnaires assessing patients' perceived quality of care. This study pre-tested the revised EORTC satisfaction with cancer care core questionnaire applicable in both the cancer inpatient and outpatient settings, and its new, outpatient-specific complementary module. The process of revision, development of the extended application, and pre-testing of these questionnaires was based on phases I to III of the "EORTC Quality of Life Group Module Development Guidelines." In phase III, patients in 11 countries in four European regions, South America and Asia completed provisional versions of the questionnaires. Fifty-seven relevant issues selected from literature reviews and input from experts were operationalized into provisional items, and subsequently translated into ten languages. Assessment of understanding, acceptability, redundancy and relevance by patients (n = 151) from oncology inpatient wards, and outpatient chemotherapy, radiotherapy and consultation settings, led to retention of, deletion of and merging of 40, 14 and 6 items respectively. Cronbach's alpha coefficients for hypothesized questionnaire scales were above 0.80. Our results provide preliminary support for the 33-item EORTC Satisfaction with cancer care core questionnaire and the 7-item complementary module specific for the outpatient care setting. A large scale phase IV cross-cultural psychometric study is now underway.

Purpose of the research The aims of the present study were to examine patients' perceptions of received information and satisfaction with information after completion of adjuvant radiotherapy (RT) for breast cancer. Associations between satisfaction with information and health related quality of life (HRQoL), and clinical variables were also studied. Methods and sample A total of 93 consecutive women planned for adjuvant RT were asked to complete two questionnaires (EORTC QLQ-C30 and QLQ-INFO25) in connection with their last treatment. Key results A total of 88 patients (95%) responded. The mean values for the information subscale scores, on a 0 to 100 point scale (QLQ-INFO25) regarding “the treatments” and “the disease” were 46 and 53 respectively. A total of 48% of the patients expressed a wish for more information. Patients treated with chemotherapy previous to RT reported statistically significant lower levels of information about “the disease”. Age was statistically significant related to satisfaction with received information. Younger women were less satisfied with the information received, and a higher proportion wanted more information (55%), as well among women treated with chemotherapy previous to RT (63%). Patients satisfied with information scored significantly higher on global health status and emotional functioning and reported less fatigue. Positive associations were found between “satisfaction with information” and HRQoL. Conclusions Improvements of information to breast cancer patients during their treatments are needed. The results also underline the need for patient-centred information in general and that extra attention should be paid to younger women and patients undergoing combined treatment.

The purpose of this blinded, randomized clinical trial was to compare two topical agents (Calendula Weleda cream vs. Essex cream) in reducing the risk of severe acute radiation skin reactions (ARSR) in relation to adjuvant radiotherapy (RT) for breast cancer.The primary endpoint was the difference in proportion of patients with ARSR, assessed with the Radiation Therapy Oncology Group/The Organization for Research and Treatment of Cancer Acute Radiation Morbidity Scoring Criteria (RTOG/EORTC scale) at follow-up. The secondary endpoints included patient reported outcome measures; Quality of Life Questionnaire (QLQ-C30), Sleep disturbances (MOS-sleep questionnaire) and symptoms from the irradiated area (visual analogue scale). Patients' experiences and adherence to the topical agents were also evaluated.A total of 420 patients were randomised and 411 were analysed. With the exception of previous chemotherapy, the treatment groups were well balanced, both regarding treatment- and patient-related factors. The incidence of severe ARSR (RTOG/EORTC grade ≤2) at the follow-up visit was 23% (n = 45) in the Calendula group and 19% (n = 38) in the Essex group. We found no difference in severe ARSR between the groups at any point of assessment. The patients reported low levels of skin related symptoms and no statistically significant differences between the groups were found.No differences in ARSR between patients randomised to Calendula or Essex cream was found. ARSR seem to be a relatively limited problem, probably more influenced by treatment related factors than by choice of skin care products in this patient group.

Introduction La satisfaction des soins (SdS) est un indicateur important de la qualite des soins et fait partie des « patient-reported outcomes » au meme titre que la qualite de vie relative a la sante. L’EORTC (« European organisation of research and treatment of cancer ») a developpe le questionnaire IN-PATSAT32 mesurant la SdS en cancerologie. Cet outil a ete valide specifiquement pour les patients hospitalises et ne couvre pas tous les aspects pertinents pour les patients en soins ambulatoires, une revision de ce questionnaire est donc primordiale. L’objectif de ce projet est de developper et de valider un questionnaire EORTC de mesure de la SdS, adapte a tout type de prise en charge, ainsi qu’un module specifique des soins ambulatoires. Les resultats de la phase III de validation sont presentes ici. Methodes La procedure de developpement et de validation du questionnaire suit les recommandations de l’EORTC. La phase I consistait en une revue de la litterature et entretiens semi-directifs realises aupres de 102 patients et 82 professionnels de sante issus de 10 pays, resultant en une liste de 57 items. La phase II consistait en la creation d’apres ces items d’une version provisoire d’un questionnaire central adapte a tout type de contexte de soins oncologiques hospitaliers et d’un module specifique des soins ambulatoires, construit sur une echelle de Likert a cinq modalites de reponse et traduits dans differentes langues. L’objectif de la phase III etait de realiser un pre-test de ces questionnaires afin d’identifier et de resoudre les eventuels problemes d’administration et d’identifier les items redondants ou potentiellement manquants. Cent cinquante patients etaient requis de diverses regions. La version provisoire du questionnaire composee de 57 items a ete administree aux patients ainsi qu’un questionnaire sur la pertinence et l’importance de chaque question. Un entretien structure a ensuite ete realise pour chaque patient. Les donnees sociodemographiques et cliniques des patients ont ete recueillies a l’inclusion. Les criteres de suppression des items etaient le manque de pertinence et d’importance de l’item, le taux de donnees manquantes, la moyenne de l’item superieure a 4, et un effet plafond superieur a 30 %. Des analyses descriptives ont ete realisees. Une validation preliminaire de la structure et de la fiabilite de l’echelle a ete realisee par une analyse factorielle exploratoire (AFE) et coefficient alpha de Cronbach, respectivement. Resultats Au total, 171 patients ont ete inclus pour la phase III dans 11 pays dont 71 en France (42 %) et 18 (11 %) en Grande-Bretagne. Parmi ces patients, 48 (28 %) etaient soignes en chimiotherapie de jour et 28 (16 %) en oncologie medicale. D’apres les criteres de selection et apres concertation avec les experts, 43 items ont ete retenus, 12 items ont ete supprimes, 4 items ont ete fusionnes (items 8–9 et items 20–21) et un item a ete reformule. L’instruction de reponse a ete clarifiee et une option « not applicable » a ete ajoutee pour certains items. Une comparaison a egalement ete effectuee entre les resultats obtenus pour la France et ceux des autres pays. Les resultats des AFE permettent de valider les echelles definies a priori. Le coefficient de Cronbach etait superieur au seuil de 0,70 pour chaque echelle sauf pour la dimension facilitee d’acces. Conclusion Les proprietes psychometriques du questionnaire EORTC PATSAT-C35 et de son module OUT-PATSAT8 ainsi obtenus a l’issue de la phase III vont etre analysees en phase IV.

Acute radiation skin reactions (ARSR) are a major problem in curative radiotherapy (RT). A number of studies have failed to show a positive effect of different skin care products to reduce or prevent ARSR. The aims for this study were to describe frequency and severity of ARSR in patients with breast cancer undergoing adjuvant RT and to test the suitability in clinical use of two assessment instruments. A majority (93%) of the 93 patients with breast cancer included in this study developed ARSR, most of them mild reactions. Low scores for pain and itching (VAS) were reported. ARSR were assessed using the modified version of RTOG/EORTC acute radiation morbidity scoring criteria and the World Health Organisation (WHO) grading system for acute and subacute toxicity by two independent observers after the completion of RT. The percentages of discordant assessment between the two observers were 21% for the WHO scale and 32% for the RTOG/EORTC. Severe ARSR, classified as grades 2–4 on both instruments resulted in good agreement between the two instruments. However, the assessments using RTOG/EORTC resulted in an almost 10% higher proportion of severe ARSR. Comparisons of health related quality of life and sleep revealed no statistically significant differences between patients with mild or severe ARSR assessed by the RTOG/EORTC scale with the exception of cognitive functioning. The use of assessment instruments to describe treatment-related symptoms is complicated and clinical experience is not always enough. More research is needed to validate these instruments to guarantee sound and precise assessments.

Objective Informational needs among cancer patients are similar, but the degree of information disclosure in different cultural areas varies. In this paper, we present the results of a cross-cultural study on information received. Methods The EORTC information questionnaire, EORTC QLQ-INFO25, was administered during the treatment process. This questionnaire evaluates the information that patients report they have received. Cross-cultural differences in information have been evaluated using statistical tests such as Kruskall–Wallis and multivariate models with covariates to account for differences in clinical and demographic characteristics across areas. Results Four hundred and fifty-one patients from three cultural areas, North–Middle Europe, South Europe, and Taiwan, were included in the study. Significant differences among the three cultural areas appeared in eight QLQ-INFO25 dimensions: information about the disease; medical tests; places of care; written information; information on CD/tape/video; satisfaction; wish for more information; and information helpfulness. North–Middle Europe patients received more written information (mean = 67.2 (North) and 33.8 (South)) and South Europe patients received more information on different places of care (mean = 24.7 (North) and 35.0 (South)). Patients from North–Middle Europe and South Europe received more information than patients from Taiwan about the disease (mean = 57.9, 60.6, and 47.1, respectively) and medical tests (70.9, 70.4, and 54.5), showed more satisfaction (64.8, 70.2, and 35.0), and considered the information more helpful (71.9, 73.9, and 50.4). These results were confirmed when adjusting for age, education, and disease stage. Conclusion There are cross-cultural differences in information received. Some of these differences are based on the characteristics of each culture. Copyright © 2011 John Wiley & Sons, Ltd.

The increasing incidence of cancer combined with prolonged survival times seen throughout the western world increases the need for rehabilitation. Diagnosis and treatment for cancer may have substantial effects on the patients' physical, psychological, social and existential well-being. The aim of this paper is to describe the current situation in cancer rehabilitation in the Nordic countries, the Netherlands and Germany.Description of the current situation in cancer rehabilitation in the Nordic countries and literature review.Rehabilitation as defined by multiple organizations covers a multidimensional view on chronic disease and its effect on the patient's life. The rehabilitation systems in Denmark, Finland, Sweden, Germany and the Netherlands differ depending on the differing social security and health-care systems, but rehabilitation provided is largely based on a similar, multidimensional and multidisciplinary understanding of cancer rehabilitation. Research on rehabilitation efforts in European countries indicates that there is substantial evidence with regard to single interventions which can be part of cancer rehabilitation.In order to assure patients and families continuing quality of life, rehabilitation should be an integral and continuous part of all cancer care.

In a prospective randomised Scandinavian trial, patients with localised invasive cutaneous melanoma of the trunk or extremities with tumours more than 2 mm thick were randomly assigned to excision with narrow (2 cm) or wide (4 cm) margins after primary surgery. The aims of the present study were to find out if there were any differences in health-related quality of life (QoL) and emotional distress between patients in the two arms over time. Patients were assessed at four time points: before randomisation, and at 3, 9, and 15 months after inclusion, using the EORTC QLQ-C30, the Hospital Anxiety and Depression Scale and the Impact of Event Scale. A study-specific questionnaire was used to assess patient-reported problems related to the scar. A total of 144 patients were included; 70 randomised to narrow excision and 74 to wide excision margins. The response rate was85% at all assessment points. No differences between the two arms were found for health-related QoL or emotional distress. Emotional functioning, insomnia, anxiety, intrusion, and avoidance improved over time (por= 0.0001). Thirty patients (32%) reported problems with the scar but there was no difference between the two arms. No differences in health-related QoL or emotional distress were found between the two arms, indicating that resection margins have limited impact on these variables.

Purpose The aim was to prospectively explore experiences related to genetic testing for malignant melanoma among unaffected previously untested members of melanoma-prone families in which germline CDKN2A mutations had been identified. Method Consecutive members of families with CDKN2A mutation attending a pigmented lesion clinic ( n =11) were interviewed and completed questionnaires at four occasions: before genetic testing, at disclosure of genetic test result and six months and one year after disclosure. The following areas were measured: anxiety and depression, risk perception, and sun-related habits. Results Disclosure of the test result did not seem to change family members' perception of their risk of developing melanoma. Few members reported anxiety of clinical significance and no one were depressed. All family members with biological children expressed concerns regarding their children and emphasized the importance of sun protection and surveillance. Sun burns and blisters were rather commonly reported by the family members. Routines regarding the procedure for conveying test result were requested. Conclusion Genetic testing of the members of melanoma families with CDKN2A mutations attending a pigmented lesion clinic did not appear to induce behavioral changes related to sun habits or emotional problems. Concerns about the future of their children were commonly expressed by participants.

The aim of this study was to explore the fulfilment of the requirements of informed consent in patients participating in cancer clinical trials. All patients consenting to a phase II or III clinical trial during one year were included (n = 325, 176 women, 54%). Data were collected by a questionnaire, Quality of Informed Consent. The response rate was 87%. High levels of knowledge (>80%) were found for items concerning voluntariness, randomisation, benefits for future patients, participation in a research trial, and the right to withdraw. Less than 50% responded correctly to items about risks associated with the trial, the unproven nature of the trial and issues about insurances. High levels of perceived understanding were reported. Despite high levels of knowledge and perceived understanding in the majority of elements of informed consent, improvements are warranted regarding knowledge about risks, the unproven nature of the treatment and the duration of treatment.

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 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.

The need for a better co-ordinated interdisciplinary approach to cancer is widely recognised. An analysis of strengths and weaknesses has emphasised the importance of a better understanding of the behavioural and social factors which determine the success of preventative and screening programmes and those which will enhace the quality of care and support available to patients and their families. The european commission provided funds to establish a consultation to formulate a strategy for the development of research in the behavioural, social and related sciences relevant to cancer. The key objectives were to inform research organisations of the steps necessary to enhance research capacity in these areas and identify the most productive directions for research in the forseeable future. The expert group identified 11 areas in which research might be expected to improve cancer control and treatment.

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.

Background This study examined patient perception of information received, satisfaction with that information, and its relation to health-related quality of life (HRQoL) and clinical and demographic variables before, during, and after radiotherapy (RT) for localized prostate cancer. Patients and Methods In 2010, 2 questionnaires (European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 [EORTC QLQ-C30] and EORTC QLQ information module [QLQ-INFO25]) were sent to 660 consecutive patients with prostate cancer who had undergone or were to undergo RT with curative intent between December 2006 and March 2010. Results The response rate was 92%. Although most patients (69%) were satisfied with the information they received, statistically significant differences were found for all but 2 EORTC QLQ-INFO25 variables, favoring those who were treated with RT alone compared with those treated with both prostatectomy and salvage RT. Statistically significant associations between all HRQoL variables and satisfaction with information were found; higher levels of satisfaction were associated with better functioning and lower levels of symptoms and problems. Conclusion Satisfaction with the information received was studied in patients with prostate cancer with localized disease. Despite the fact that the majority of patients reported being satisfied with the information received, there is room for improvement, especially regarding “the disease,” “other services,” “different places of care,” and “things you can do to help yourself.” Patients treated with both prostatectomy and salvage RT reported significantly lower levels of satisfaction with information received and of having received significantly less information than did patients treated with RT alone.

Purpose: To investigate whether conjunctival and uveal nevi and primary acquired melanosis are more common in individuals with the dysplastic nevus syndrome than in control subjects derived from the general population. Methods: Power calculations were used to determine the sample size. After invitation, 162 individuals with the dysplastic nevus syndrome and 119 control subjects, matched for sex and age but otherwise randomized from the Stockholm county census file, were entered into the study. All individuals were examined in a masked fashion by the same ophthalmologist, and the presence of conjunctival and uveal melanocytic lesions and the iris color, skin type, and hair color of each individual were recorded. Contingency tables and odds ratios were used for statistical evaluation. Results: The proportions of individuals with the dysplastic nevus syndrome featuring primary acquired melanosis of the conjunctiva, or nevi of the iris and choroid were not significantly different from those of control subjects. However, individuals with the dysplastic nevus syndrome appeared to have a more sun-sensitive skin type and a reddish or blond hair color more often than control subjects. Conclusion: In contrast to previous reports, this study suggests that ocular melanocytic lesions are no more common in individuals with the dysplastic nevus syndrome than in the general population. Therefore, this work does not provide support that periodic ophthalmic surveillance of individuals with the dysplastic nevus syndrome for the purpose of detecting conjunctival or uveal melanomas, or their precursors, is meaningful.

AimsAssessment of oral and dental problems is seldom routine in clinical oncology, despite the potential negative impact of these problems on nutritional status, social function and quality of life (QoL). The aim was to develop a supplementary module to the European Organisation for Research and Treatment of Cancer Core Questionnaire (EORTC QLQ-C30) focusing on oral health and related QoL issues in all cancer diagnoses.MethodsThe module development followed the EORTC guidelines. Phases 1&2 were conducted in France, Germany, Greece, Netherlands, Norway and United Kingdom, while seven countries representing seven languages were included in Phase 3.ResultsEighty-five QoL-items were identified from systematic literature searches. Semi-structured interviews with health-care professionals experienced in oncology and oral/dental care (n = 18) and patients (n = 133) resulted in a provisional module with 41 items. In phase 3 this was further tested in 178 European patients representing different phases of disease and treatment. Results from the interviews, clinical experiences and statistical analyses resulted in the EORTC QLQ-OH17. The module consists of 17 items conceptualised into four multi-item scales (pain/discomfort, xerostomia, eating, information) and three single items related to use of dentures and future worries.ConclusionThis study provides a useful tool intended for use in conjunction with the EORTC QLQ-C30 for assessment of oral and dental problems. The increased awareness may lead to proper interventions, thereby preventing more serious problems and negative impact on QoL. The reliability and validity, the cross-cultural applicability and the psychometric properties of the module will be tested in a larger international study.KeywordsEORTC QLQ-C30; Oral health; Quality of life; Questionnaires; Patient reported outcomes

An information programme for patients with cutaneous malignant melanoma, Stage I, aiming at increasing satisfaction with information, was carried out at the Department of Oncology (Radiumhemmet). The programme consisted of a group meeting and a brochure. A total of 231 consecutive patients were included, and 149 (65%) reported interest in participation and were randomized to the Information group ( n = 77) or to the Control group. A total of 67 patients (29%) were not interested (the NI-group). To evaluate the programme, the patients in the three groups completed questionnaires regarding satisfaction with information, knowledge of melanoma and psychological and psychosomatic variables before randomization and at the first visit for follow-up at Radiumhemmet. After the information programme, the Information group was significantly more satisfied with information, had a higher level of knowledge and a lower proportion requested further information as compared with the Control group. No differences were found on the psychological and psychosomatic variables.

Information is one of the main interventions given to cancer patients. Important research into information disclosure has been conducted and major advances have been made. We present the main theoretical models used to understand the information field and describe the current situation regarding the principal factors related to information: patients' needs, coping strategies, illness representations, cross-cultural differences, the role of the family, and strategies to enhance information giving, such as professional training and patient-targeted interventions. We highlight the need to assess patients' characteristics and desires through questionnaires and interviews and present the European Organisation for Research and Treatment of Cancer Quality of Life Group information questionnaire (EORTC QLQ-INFO 25). This instrument evaluates the level of information patients have received in different areas of their disease, treatment and care, and evaluates qualitative aspects. Finally, we describe the key areas of the information field and discuss how these areas could change in the future.

The EORTC Quality of Life (QOL) Group has developed an instrument to evaluate the information received by cancer patients. This study assessed the psychometric characteristics of the EORTC INFO module in a large international/multi-cultural sample of cancer patients.The provisional 26-item information module (EORTC INFO26) was administered with the EORTC QLQ-C30 and the information scales of the inpatient satisfaction module EORTC IN-PATSAT32 on two occasions during the patients' treatment and follow-up period. Questionnaire-hypothesised scale structure, reliability, validity and responsiveness to changes were evaluated through standard psychometric analyses. Patient acceptability was assessed with a debriefing questionnaire.The study comprised 509 patients from 8 countries (7 European countries and Taiwan) with different cancers and disease stages. Multi-trait scaling analysis led to the deletion of one item but confirmed the hypothesised 4 multi-item scales (information about disease, medical tests, treatment and other services) and eight single items. Internal consistency for all scales was good (α0.70), as was test-retest reliability (intraclass correlations0.70). All items can be combined to generate a single score (α0.90). Convergent validity was supported by significant correlations with related areas of IN-PATSAT32 (r0.40). Low correlations with EORTC QLQ-C30 scales confirmed divergent validity (r0.30) The EORTC INFO-25 module discriminated among groups based on gender, age, education, levels of anxiety and depression, information wishes and satisfaction. Only one scale captured changes over time.The EORTC QLQ-INFO 25 is a reliable and valid self-reported instrument. The module can be used in cross-cultural observational and intervention studies.

Purpose To evaluate a program initiated in 1987 by the Swedish Melanoma Study Group aiming to provide preventive surveillance to kindreds with hereditary cutaneous melanoma and dysplastic nevus syndrome. Patients and Methods Overall, 2,080 individuals belonging to 280 melanoma families were followed for 14 years between 1987 and 2001 at 12 participating centers. Data were registered in a central database. Results Among 1,912 skin lesions excised during follow-up, 41 melanomas were removed in 32 individuals. Of these, 15 (37%) were in situ melanomas and 26 (63%) invasive melanomas. The median tumor thickness of invasive melanomas was 0.5 mm. Ulceration was absent in 24 of 26 invasive melanomas (92%) and 12 (46%) lacked vertical growth phase. Compared with melanomas in the general Swedish population, the melanomas identified in these kindreds during follow-up had better prognostic characteristics. All melanomas except one were diagnosed in families with two or more first-degree relatives with melanoma. Diagnosis of melanoma occurred in three of eight kindreds with germline CDKN2A mutations, supporting that families with such mutations are at increased risk for melanoma development. Of the 32 individuals who developed melanoma during follow-up, 21 (66%) had had at least one previously diagnosed melanoma. Conclusion This study shows that a coordinated program aimed at detecting and offering skin surveillance in kindreds with hereditary cutaneous melanoma results in a low incidence of melanomas during the follow-up period and that the tumors that do arise have favorable prognostic characteristics.

The aim of this study is to describe cancer patients' existential reflections and how these reflections were met by the nursing staff. A qualitative method of data collection was used. Ten patients with breast- or prostate cancer who had completed curative treatment were interviewed. The results showed that the cancer diagnosis resulted in existential reflections in some of the patients. These reflections concerned the meaning of life, God/a higher power, health, work, relations and sexuality. Reflections on the cancer consisted in beliefs about the causes of cancer, treatment and cancer and sexuality. It could also be seen that loss of important life values, such as health and sexuality could lead to loss of meaning of life. Explicit reflections on sexuality were only made by two of the men in the study. The patients reported a need of existential support as well as obstacles for giving such support. Obstacles could be lack of time and lack of continuity, as well as lack of knowledge resulting in an inability to identify existential issues. Some of the patients had wanted existential support from nurses, while others received the support they needed from family and friends.

The purpose of this study was to investigate anxiety and depression as predictors for recurrence-free survival in cutaneous melanoma, when corrected for known prognostic factors. The association between known prognostic factors and anxiety and depression were also studied. Consecutive patients (n = 437) completed the Hospital Anxiety and Depression Scale (HAD) approximately three months after diagnosis of melanoma. Neither anxiety, nor depression turned out to be prognostic factors for time to recurrence. A higher proportion of young patients, women, patients without ulcerated tumours, patients with tumours with low mitotic index and Clark's level II tumours scored > or = 8 (possible clinical levels of anxiety) on the anxiety scale. Furthermore, on the depression scale, a higher proportion of young patients scored > or = 8 (possible clinical level of depression). Using the HAD scale, a well-validated instrument for assessing anxiety and depression in patients with somatic diseases, our data did not show any associations between anxiety or depression and outcome in terms of recurrence in patients with localized disease.

A total of 127 non-attenders in a population-based melanoma screening program, 58 women and 69 men, were asked in a telephone interview about reasons for non-attendance. Of those, 105 also completed a mailed questionnaire, measuring perceived susceptibility to and knowledge about melanoma. During the same period, attenders (n = 286) at the screening clinic completed the same questionnaire. The most commonly reported reasons for non-attendance were ‘I forgot about it’, ‘lack of time’ and ‘no need for examination’. A majority of non-attenders held a positive attitude towards preventive programs in general and to the present invitation. Most of the improvements suggested by the non-attenders were strategies to reduce practical barriers. Non-attenders scored lower than attenders on perceived susceptibility. High and equal levels of knowledge about melanoma were found among attenders and non-attenders. Men were more likely to be non-attenders. Higher perceived susceptibility and a higher level of knowledge about melanoma were found among women as compared to men. The results suggests that there is potential to increase attendance in future melanoma programs by reducing practical barriers. © 1997 John Wiley & Sons, Ltd.

The Swedish Melanoma Study Group runs a programme aimed at prevention and early detection of premalignant and malignant melanoma in families with two or more members having malignant melanoma. Psychological consequences of participation in this programme were studied. A questionnaire containing items concerning cognitive and emotional responses to the programme was completed by 115 consecutive individuals at their first visit to the clinic. The same questionnaire was administered by mail 7 months later. The levels of psychological and psychosomatic problems were relatively low at both points of assessment. No negative psychological effects were found, neither in the group with dysplastic naevus syndrome (DNS) with increased risk for malignant melanoma, nor in the group without dysplastic naevi. Only one variable, “emotional responses to the visit” differentiated between the groups, with higher scores in the group without DNS. A majority of the individuals expressed positive attitudes to the clinic.

The aim of the study was to describe attitudes toward sunbathing and sun protection, to examine sun-related behaviors, and to present an effort to change sun-related behaviors among young adults without a cancer diagnosis in melanoma-prone families. Ten patients were interviewed, and questionnaires were sent on 3 occasions during a 15-month period to the total population (n = 87) meeting the inclusion criteria. Data from interviews and questionnaires showed extensive ultraviolet-exposure behaviors in this high-risk group for melanoma, although not always expressed in terms of sunbathing. When asked about sunbathing, 1/3 reported sunbathing "Often" or "Very often," despite a decrease in sunbathing during the study period. In addition, 35% reported current sun bed use. The most important reason for sunbathing was attractiveness. The risk of getting skin cancer was the most important reason to refrain from sunbathing. The majority estimated their own risk for melanoma as equal or lower compared with the general population. The planned intervention failed due to low attendance. Ultraviolet exposure is extensive. The individual perception of personal risk and the motivation to change behaviors are important factors to consider when designing a preventive program. Interest for group information was low in this age group.

Tumour thickness is the most important prognostic factor in malignant melanoma. To reduce the melanoma-related mortality, factors related to the presentation of thick melanoma have to be identified. Three samples of melanoma patients (n=694) were studied for this purpose. Histogenetic type was the only factor which differentiated between 'thin' (or = 0.8 mm) and 'thick' (2.0 mm) lesions. During a 10-year period only 3% of the nodular lesions were 'thin' at diagnosis. Differences in knowledge about melanoma or the location of the lesion (either 'easy' or 'difficult' for the patient to observe) did not explain differences in tumour thickness. The most common tumour site irrespective of histogenetic type and gender was 'back of the trunk'. 'Increase in diameter' and 'bleeding' were the symptoms most frequently reported by patients with 'thick' melanoma. 'Thick' lesions were diagnosed in older age groups and in men to a greater extent. Considering these results, melanoma prevention should also be targeted to older age groups and attention should be paid to symptoms such as 'increase in diameter' even in the absence of other characteristic symptoms of melanoma. An increased proportion of nodular melanoma diagnosed as 'thin' lesions can be interpreted as a step forward in secondary prevention.

Using a randomized design, the effects of an information programme for melanoma patients were studied. The programme consisted of a group meeting and a brochure. The present study reports on the six-month follow-up of the effects of the programme. A total of 128 patients participated in the programme, 55 before and 73 after the first medical control visit. Questionnaires regarding knowledge about melanoma, psychological and psychosomatic variables were completed at the first medical control visit and six months later by mail. A questionnaire concerning patients attitudes to the programme was included after six months. Knowledge about melanoma increased and a majority of patients were satisfied with the information brochure, the group meeting and the group leader, but 40% considered that too few participants attended in their group meeting. No effects on psychological or psychosomatic variables were found. Men and women participated to the same extent.