Palliative needs and illness trajectory associated with metastatic upper gastrointestinal cancer.

INTRODUCTION: Patients suffering from metastatic upper gastrointestinal cancer are burdened by physical, social, existential and psychological problems, though documentation of these problems may be insufficient. In Denmark, basic palliative care is fragmented and characterised by quality differences. This challenges cohesive palliative care interventions as patients experience transitions in the course of illness. The aim of this study was to identify and present the illness trajectory and to investigate the documentation of palliative needs for patients with metastatic upper gastrointestinal cancer. METHODS: Data on the documented palliative needs and on transitions were retrospectively collected from the electronic medical records at a surgical ward at Herlev-Gentofte Hospital during a six-month period in 2019. Descriptive statistics were used to present the palliative care needs. RESULTS: Pain and nausea/vomiting were documented in 62%, constipation in 35% and fatigue in 43% of the 63 patients included. Psychological, existential and social symptoms were sparsely documented. Several patients (41%) had more than one admittance to the surgical ward, 62% were treated in the oncology department and 35% received specialised palliative care. CONCLUSION: The frequent transitions during the disease trajectory and the need to direct attention towards all four domains of palliative care should compel health professionals to adopt a systematic approach when identifying and treating their patients' palliative needs. FUNDING: none. TRIAL REGISTRATION: not relevant.

Motivators for physical activity in patients with minor stroke: a qualitative study.

PURPOSE: Physical inactivity is a major risk factor for stroke. However, to encourage physical activity after stroke, it is important to know what motivates the patients. We aimed to explore possible motivators and barriers for physical activity in patients discharged after minor stroke or transient ischemic attack (TIA). METHODS: A qualitative study including 35 patients (21 men) with minor stroke or TIA (median age; 69 years, range 47-90) in semi-structured focus group interviews. Audio recordings were transcribed to text verbatim and analyzed with qualitative content analysis. RESULTS: Six interviews of 60 min. revealed five categories; the patients had a positive attitude towards physical activity, and they preferred to exercise locally under supervision of health professionals. Physical activity with others was motivating and obligating, and if possible as a weekly habit. Some experienced physical- and mental sequelae, which kept them from exercising. CONCLUSION: This study provides valuable knowledge of what motivates and prevents patients with minor stroke or TIA to be physically active after hospital discharge, and what to consider when designing future exercise studies. Consequently, it is recommended that patients with minor stroke or TIA are offered supervised physical activity to prevent worsening of cardiovascular disease and recurrent cardiovascular event.Implications for rehabilitationParticipants were positive towards physical activity after minor stroke or transient ischemic attack (TIA).Physical activity with others was perceived as both motivating and obligating.Post-stroke fatigue, lack of energy, and overview should be considered when designing secondary prevention programs.Participants call for exercise opportunities arranged locally and as group exercise supervised by health professionals with knowledge of stroke.

Establishment of a nurse-led clinic for late complications after colorectal and anal cancer surgery: a descriptive study.

PURPOSE: Survival rates after colorectal and anal cancer are increasing and more patients have late complications to treatment. This represents a clinical field under development, and we have established a specialized clinic for late complications after colorectal and anal cancer. With this paper, we want to give our experiences and present the organizational setup with a nurse as the primary contact person. METHODS: We have established a multidisciplinary clinic for the treatment of late complications and the clinic is organized with specialized nurses as the front persons. The structure includes a stepwise increase in expertise level when needed, and the patient has one common entry regardless of symptoms. Initial screening is performed by an electronic questionnaire which is followed up by a consultation with the nurse. The nurse can provide primary treatment according to local algorithms developed in the clinic and refer the patient to more specialized care if needed. RESULTS: Experiences from the first year of service show that more than half of the patients needs this and wants consultation in the late complication clinic. We also found that most of the consultations were performed successfully by phone instead of by physical visits, and the most common clinical problem was bowel symptoms including diarrhea and urge. CONCLUSION: We have established a nurse-led clinic for late complications after colorectal and anal cancer. There seems to be a high need for this function in a department taking care of colorectal and anal cancer.

Patients' experiences of abdominal exercises after stoma surgery: a qualitative study.

PURPOSE: Abdominal exercises are being advocated after stoma surgery and investigated in clinical research. Little is known about the patients' perspective of doing abdominal exercises in the first three months after getting a stoma. The aim of this study was to explore patients' experiences with and attitudes toward abdominal exercises after stoma surgery. MATERIALS AND METHODS: Patients with a new ileostomy or colostomy were invited to participate in an interview after having performed a set of abdominal exercises one time as part of a preceding study. Semi-structured interviews were conducted at inpatient wards and outpatient clinics at two hospitals. Audio recordings were transcribed to text verbatim and analyzed with inductive content analysis. RESULTS: Analysis of 14 interviews resulted in four categories: "The attitude toward abdominal exercises is positive"; "Treatment and illness form barriers to abdominal exercises"; "Wish for help with abdominal exercises after stoma surgery"; and "Abdominal exercises are experienced as being easy". CONCLUSIONS: Participants with a new stoma wished for guidance in abdominal exercises. Health professionals should be aware of potential barriers to participation in abdominal exercise in patients with a stoma. Abdominal exercises were easy to perform with a stoma in a supervised setting.Implications for rehabilitationParticipants were positive toward abdominal exercises, and the stoma was rarely in the way.Help and guidance with abdominal exercises is important after stoma surgery.Health professionals should consider possible barriers and concerns to exercise.

Evaluation of abdominal exercises after stoma surgery: a descriptive study.

PURPOSE: To evaluate the feasibility of exercises for the abdominal muscles in patients after colostomy or ileostomy formation on the following parameters: muscle activity, pain, discomfort, and difficulty of performing the exercises. MATERIALS AND METHODS: Patients with a new stoma were divided into groups based on time after surgery: Early group, 0-2 weeks (n = 12); Intermediate group, 2-6 weeks (n = 15); and Late group, 6-12 weeks (n = 10). During a single individual test session, participants in each group performed a different set of 10-11 abdominal coordination and strengthening exercises for the abdominal muscles. Activity of the abdominal muscles was measured with electromyography. Pain, discomfort, and difficulty were rated for each exercise. RESULTS: For the Early group, muscle activity reaching a predetermined threshold was measured for half of the participants in a few exercises. In both the Intermediate group and the Late group, muscle activity reaching the onset criteria was measured for all muscles for a high percentage of participants in several exercises. Both strengthening and coordinating exercises were feasible based on low ratings of pain, discomfort, and difficulty. CONCLUSIONS: This study identified feasible exercises that activated the abdominal muscles at different time points after stoma formation. The observations can be used as guidance for the choice of exercises in clinical practice and future research.Implications for rehabilitationThe findings of this study can be used in clinical practice as guidance for choice of exercise at different time points after surgery.This study identified useful exercises for activating the abdominal muscles in rehabilitation after stoma surgery from two weeks on.In the first two postoperative weeks, there was limited involvement of the abdominal muscles with the evaluated exercises.Most of the evaluated abdominal exercises were feasible after stoma surgery based on pain, discomfort, and difficulty.

Association between women's age and stage, morphology, and implantation of the competent blastocyst: a multicenter cohort study.

OBJECTIVE: To study if the age of women undergoing assisted reproductive technology treatment associates with stage, morphology, and implantation of the competent blastocyst. DESIGN: Multicenter historical cohort study based on exposure (age) and outcome data (blastocyst stage and morphology and initial human chorionic gonadotrophin [hCG] rise) from women undergoing single blastocyst transfer resulting in singleton pregnancy/birth. SETTING: Sixteen private and university-based facilities. PATIENT(S): In this study, 7,246 women who, between 2014 and 2018, underwent controlled ovarian stimulation (COS) or frozen-thawed embryo transfer (FET) with a single blastocyst transfer resulting in singleton pregnancy were identified. Linking data to the Danish Medical Birth Registry resulted in a total of 4,842 women with a live birth being included. INTERVENTION(S): None. MAIN OUTCOME MEASURE(S): The competent blastocyst development stage (1-6), inner cell mass (A, B, C), trophectoderm (A, B, C), and initial serum hCG value. RESULT(S): Adjusted analysis of age and stage in COS treatments showed that for every 1-year increase in age there was a 5% reduced probability of the competent blastocyst assessed as being in a high stage at transfer. Comparison between hCG values in women 18-24 years and 25-29 years in both COS and FET showed significantly lower levels in the youngest women. CONCLUSION(S): The initial hCG rise was influenced by the age of the woman, with an identical pattern for hCG values in COS and FET treatments. In COS, the competent blastocyst had a reduced stage with increasing women's age.

Smoking cessation prolongs survival in female cancer survivors - the Danish nurse cohort.

PURPOSE: To explore smoking cessation between cancer survivors and cancer-free women, and the potential survival benefits from smoking cessation in cancer surviving women. METHOD: We pooled 46,334 responses from the Danish Nurse Cohort. The cohort consists of female nurses, who were invited for surveys in 1993, 1999 and 2009. Participants were linked to nationwide registries on hospitalization, cause of death and migration through 2016. Odds for smoking cessation by cancer diagnosis were computed in propensity score matched logistic regression models, while survival by postdiagnosis smoking cessation was estimated in cox proportional hazards models. RESULTS: Eligible for analysis were 7841 women (mean age = 56.7 years, SD ± 7.2), who were smokers at baseline and survived to the next follow-up survey. Of these, 545 women were diagnosed with cancer and matched by propensity score (1:2) with 1090 cancer-free women. Odds for smoking cessation were significantly higher in cancer-diagnosed women compared to their cancer-free peers (OR = 1.31, 95% CI: 1.06-1.61). Moreover, mortality risk was significantly lower among cancer survivors who stopped smoking (HR = 0.64, 95% CI: 0.46-0.91), compared to persistent smokers. CONCLUSIONS: The results suggest considerable survival benefits from smoking cessation in cancer surviving female nurses, and that the time surrounding cancer diagnosis may serve as a teachable moment for smoking cessation. However, due to substantial methodological limitations embedded in the study, careful interpretation of the presented results is warranted. Future studies are needed to demonstrate the effects of diagnosis on smoking cessation as well as the effects of smoking cessation on survival in female cancer populations.

Joint tobacco smoking and alcohol intake exacerbates cancer risk in women- the Danish nurse cohort.

PURPOSE: To explore separate and combined tobacco and alcohol use and risk of overall, smoking-related, alcohol-related, breast and gynecological cancers in women. METHOD: Questionnaires from 19,898 women in The Danish Nurse Cohort in 1993 were linked to registries on hospitalizations, death causes and migration until Dec 2016. Cancer risk by tobacco and alcohol was estimated using Cox proportional hazards models. RESULTS: 16,106 nurses, aged >44 years (mean = 56), were eligible for analysis. Throughout 23 years (mean follow-up = 18.8 years) overall cancers counted 4,968. Of these, 1,897, 2,231, 1,407 and 579 events were smoking-related, alcohol-related, breast cancers and gynecological cancers. Increased risks of overall, smoking-related, and breast cancer were observed for current smoking and excess alcohol intake (>14 units/week), separately, compared to never smoking and light drinking (1-7 units/week) respectively. Moderate drinking (8-14 units/week) increased the risk of alcohol-related and breast cancer. Additional risk increases were observed among smokers drinking alcohol above light levels for overall, smoking-related, alcohol-related and breast cancer (HR = 1.40, 95% CI:1.30-1.51, HR = 1.72, 95% CI:1.52-1.94, HR = 1.33, 95% CI:1.26-1.40, HR = 1.32, 95% CI:1.15-1.53, respectively), compared to non-smokers drinking lightly. These risks increased further for smokers drinking above moderate levels (HR = 1.49, 95% CI:1.36-1.63, HR = 1.97, 95% CI:171.-2.26, HR = 1.40, 95% CI:1.22-1.60, HR = 1.33, 95% CI:1.12-1.57, respectively). No significant associations were found for gynecological cancer. CONCLUSIONS: Smoking and alcohol, both separately and combined, increased risks of overall, smoking-related, alcohol-related and breast cancer; combined use resulted in incremental risk increases. Co-use of smoking and alcohol represent an extensive threat to public health; thus, prevention could benefit from combined targeting.

The Patient-Healthcare Professional Relationship and Communication in the Oncology Outpatient Setting: A Systematic Review.

BACKGROUND: Today, cancer care and treatment primarily take place in an outpatient setting where encounters between patients and healthcare professionals are often brief. OBJECTIVE: The aim of this study was to summarize the literature of adult patients' experiences of and need for relationships and communication with healthcare professionals during chemotherapy in the oncology outpatient setting. METHODS: The systematic literature review was carried out according to PRISMA guidelines and the PICO framework, and a systematic search was conducted in MEDLINE, CINAHL, The Cochrane Library, and Joanna Briggs Institute Evidence Based Practice Database. RESULTS: Nine studies were included, qualitative (n = 5) and quantitative (n = 4). The studies identified that the relationship between patients and healthcare professionals was important for the patients' ability to cope with cancer and has an impact on satisfaction of care, that hope and positivity are both a need and a strategy for patients with cancer and were facilitated by healthcare professionals, and that outpatient clinic visits framed and influenced communication and relationships. CONCLUSIONS: The relationship and communication between patients and healthcare professionals in the outpatient setting were important for the patients' ability to cope with cancer. IMPLICATIONS FOR PRACTICE: Healthcare professionals need to pay special attention to the relational aspects of communication in an outpatient clinic because encounters are often brief. More research is needed to investigate the type of interaction and intervention that would be the most effective in supporting adult patients' coping during chemotherapy in an outpatient clinic.

Living with a parastomal bulge - patients' experiences of symptoms.

AIMS AND OBJECTIVES: To investigate experienced symptoms of parastomal bulging in relation to an ileostomy or colostomy. BACKGROUND: Parastomal bulging is a common complication of stoma formation that can affect patients' physical, psychological and social function. Symptom burdens reported by health professionals vary from asymptomatic to high symptom load; however, patients' experiences of symptoms are lacking. DESIGN AND METHOD: A qualitative design with focus group interviews was chosen for data collection. Twenty patients participated in five semi-structured interviews. Analysis was performed using a phenomenological-hermeneutic approach. FINDINGS: The bulge caused different unfamiliar bodily sensations that interacted with patients' everyday lives. Some but not all of these sensations were modifiable. As the bulge and the ostomy changed size and shape, patients had to adjust and readjust stoma care continuously. The physical change called for patients' awareness and posed a threat to patients' control of the ostomy and challenged stoma self-care. The bulge caused a bodily asymmetry that deformed the patients' bodies in a way that exceeded the perceived alteration already caused by the stoma. To cover the physical disfigurement, new clothing solutions, garment wear and creativity were essential in everyday life. Patients gradually adapted to the bulge over time. Easy access to professional help was crucial in order to find the best appliance and garment solution in relation to the bulge. CONCLUSIONS: Various symptoms related to the parastomal bulge affected patients' everyday lives in different ways and underpinned that an individualised approach is important when addressing patients' problems and complaints. Research into nonsurgical treatments and patient perspectives is limited and highly warranted to improve clinical outcome. RELEVANCE TO CLINICAL PRACTICE: The ever-changing bulge posed a threat to patients' control of the ostomy and required specific care from the stoma therapist. Needs-based access to counselling, advice and supplementary materials is important.

Constipation is casting a shadow over everyday life - a systematic review on older people's experience of living with constipation.

AIMS AND OBJECTIVES: To explore and summarise best evidence of how constipation affects the daily living of older people from their own perspective. Furthermore, to assess how interventions aimed at treating constipation in older people affect patient-reported outcome such as quality of life. BACKGROUND: Constipation is a common and overlooked problem with an impact on everyday life, especially among older people. Older people seem to have individual preconceptions on constipation which can influence the strategies used to prevent and treat constipation. DESIGN: A systematic review, integrating findings from both qualitative and quantitative studies. METHOD: Systematic searches were carried out in PubMed, CINAHL, PsycINFO and EMBASE on the 31st of July 2014. A search strategy was constructed with key concepts identified using PICO to identify quantitative studies and PIC(o) to identify qualitative studies. Search terms included constipation, elderly, aged, elderly people, aged people, quality of life, patient experience, patient perspective, meaning, emotion, psychological. Reference lists were searched manually. RESULTS: A total of nine studies were included in the review, five quantitative and four qualitative. Three main themes crystallised from the results of the included studies: bodily experiences, everyday life shadowed by constipation and adverse psychological effects. CONCLUSION: Constipation among older people was connected to subjective and comprehensive experiences. It had a negative impact on physical and mental well-being as well as the social life of older people. The review also showed that older people had individual and personal strategies, based on their own beliefs. RELEVANCE TO CLINICAL PRACTICE: Healthcare professionals need to be aware of the experiences of living with constipation as well as the range of strategies used by patients to prevent and treat constipation. The patient perspective on constipation needs to be integrated in the strategies and actions carried out by healthcare professionals.

Translation of questionnaires measuring health related quality of life is not standardized: a literature based research study.

INTRODUCTION: There is growing awareness of the need to explore patient reported outcomes in clinical trials. In the Scandinavian Surgical Outcomes Research Group we are conducting several clinical trials in cooperation between Danish and Swedish surgical researchers, and we use questionnaires aimed at patients from both countries. In relation to this and similar international cooperation, the validity and reliability of translated questionnaires are central aspects. MAIN OBJECTIVES: The purpose of this study was to explore which methodological measures were used in studies reporting translation of questionnaires. Furthermore, we wanted to make some methodological suggestions for clinical researchers who are faced with having to translate a questionnaire. MATERIAL AND METHODS: We designed a research study based on a survey of the literature and extracted data from published studies reporting the methodological process when translating questionnaires on health related quality of life for different diseases. RESULTS: We retrieved 187 studies and out of theses we included 52 studies. The psychometric properties of the translated versions were validated using different tests. The focus was on internal validity (96%), reliability (67%) criterion validity (81%), and construct validity (62%). For internal validity Cronbach's alpha was used in 94% of the studies. CONCLUSIONS: This study shows that there seems to be a consensus regarding the translation process (especially for internal validity) although most researchers did not use a translation guide. Moreover, we recommended that clinical researchers should consider three steps covering the process of translation, the qualitative validation as well as the quantitative validation.

[One in five surgeons do not wash hands after visiting a toilet - an ethnographic field study].

INTRODUCTION: Non-compliance with regard to hand hygiene is a major problem in the health-care system especially among surgeons and anaesthetists. The purpose of this study was to examine the hand hygiene routines after toilet visits among participants attending an international surgical congress. METHODS: An observational study was conducted at the American College of Surgeons (ACS) Clinical Congress 2012 and at the American Medical Writers Association (AMWA) Congress 2012 as comparison. The study was performed as an ethnographic field study. A standardized observational matrix was developed for observing whether hand washing (as a surrogate measure of hand hygiene) was performed after toilet visits by observers. Frequencies were compared using Fisher's exact test. RESULTS: A total of 100 persons were observed (80% males). Of the 50 males observed at the ACS meeting, ten males did not use hand hygiene in relation to toilet visits (20%), while only one person at the AMWA meeting out of the 50 observed did not use hand hygiene (2%), p = 0.008. At both congresses only males did not use hand hygiene in relation to toilet visits. CONCLUSION: One in five surgeons did not wash hands after visiting a toilet. Even though the observed surgeons were not observed in an operating theatre or in a setting that required a distinct degree of hand hygiene, it does reveal a worrying behaviour. It is not known whether this was a conscious act, the result of business, or if it was due to lack of knowledge about the effects of hand hygiene on bacterial transmission. FUNDING: not relevant. TRIAL REGISTRATION: This study was neither registered at the National Committee of Health Research nor at Clinical Trials since it did not meet the requirements of registration.

Number of published randomized controlled multi center trials testing pharmacological interventions or devices is increasing in both medical and surgical specialties.

BACKGROUND: In general, there is a need for testing new interventions in large randomized controlled trials. Depending on the research question it may be advantageous to establish multicenter studies as a way of organizing clinical trials in order to increase study power. MAIN OBJECTIVES: The object of this study was to investigate the development in the organization of multicenter studies, the distribution of studies within different clinical specialties, across continents, and investigate the differences related to testing various interventions. METHODS AND MATERIALS: A literature search was done in MEDLINE for multicenter studies published in 1995, 2000, 2005, and 2010, respectively. Data extraction identified data related to clinical specialties, interventions, participating patients, departments, countries, and continents. RESULTS: The number of multicenter studies increased from 112 in 1995 to 1,273 in 2010, with a larger share of multicenter studies being performed in Europe and North America. The pharmacological interventions were primarily being tested in medical studies followed by the device tests predominantly in surgical studies. The number of included patients as well as the number of participating departments increased during the time span, though the increase in studies was most evident in Europe and North America compared with the rest of the world.

Patient education after stoma creation may reduce health-care costs.

INTRODUCTION: Researchers are urged to include health-economic assessments when exploring the benefits and drawbacks of a new treatment. The aim of the study was to assess the costs associated with the establishment of a new patient education programme for patients with a stoma. MATERIAL AND METHODS: Following a previous case-control study that explored the effect of patient education for stoma patients, we set out to examine the costs related to such a patient education programme. The primary outcome was disease-specific health-related quality of life measured with the Ostomy Adjustment Scale six months after surgery. The secondary outcome was generic health-related quality of life measured with Short Form (SF)-36. In this secondary analysis, we calculated direct health-care costs for the first six months post-operatively from the perspective of the health-care system, including costs related to the hospital as well as primary health care. RESULTS: The overall cost related to establishing a patient education programme showed no significant increase in the overall average costs. However, we found a significant reduction in costs related to unplanned readmissions (p = 0.01) as well as a reduction in visits to the general practitioner (p = 0.05). CONCLUSION: Establishing a patient education programme - which increased quality of life - will probably not increase the overall costs associated with the patient course. FUNDING: The study received financial support from Søster Inge Marie Dahlgaards Fond, Diakonissestiftelsen, Denmark, and from Aase and Ejnar Danielsens Foundation, Denmark. TRIAL REGISTRATION: NCT01154725.

Health related quality of life may increase when patients with a stoma attend patient education--a case-control study.

INTRODUCTION: Adaptation to living with a stoma is complex, and studies have shown that stoma creation has a great impact on patients' health related quality of life. The objective was to explore the effect of a structured patient education program on health related quality of life. Therefore, we implemented interventions aimed at increasing health related quality of life during and after hospital admission. MATERIALS AND METHODS: We designed a case/control study aimed at adult patients admitted to the surgical ward for stoma creation, irrespective of type of stoma or reason for creation of stoma. We included 50 patients in the study. Health related quality of life was measured before hospital discharge, three months and six months after stoma creation. The program included educational interventions involving lay-teachers, alongside health professional teachers. RESULTS: We found a significant rise in health related quality of life in the intervention group (P<0.001) and no significant change in the control group (P = 0.144). However, we found no significant differences when comparing between groups at 3 and 6 months (p = 0.12 and p = 0.63, respective). Additionally, there were differences in scores in health related quality of life baseline (p = 0.045) with lower scores in the intervention group compared with the intervention group. However, there were no significant differences in the demographic variables at baseline. CONCLUSIONS: Educational activities aimed at increase in knowledge and focusing on patients' psychosocial needs may lead to a rise in patients' health related quality of life. When patients with a stoma attend a structured patient education program it is possible to improve their health related quality of life compared with patients with a stoma, who do not attend the program. TRIAL REGISTRATION: ClinicalTrials.gov NCT01154725.

Life after stoma creation.

BACKGROUND: Stoma creation is a surgical operation where the surgeon makes an artificial opening on the abdomen from where the bowel is taken out. It is a radical treatment with permanent physical signs of bodily change. In general, it leads to loss of a central and personal physical function, as well as an alteration in the bodily design. Research in the field may provide additional information about central elements when adapting to life with a stoma. There are currently no studies that adequately focus on the relationship between health-related quality of life and stoma construction in a Danish context, neither for temporary or permanent construction, nor in relation to the importance of stoma handling. PURPOSE: The overall objective of the study was to investigate health-related quality of life related to stoma creation and patient education. Methodologically, the project was implemented as a mixed methods study in which qualitative interview studies and two systematic literature reviews identified interventions, which were subsequently tested in a clinical case/control study. Finally the case/control study was made subject to an economic analysis. The project is based on 6 papers reporting the results. ARTICLE 1: Impact of a temporary stoma on patients everyday-lives: feelings of uncertainty while waiting for closure of the stoma. The study included 7 participants who were interviewed in focus groups. The results indicated that patients experienced a high degree of uncertainty in connection with the stoma being temporary. At the same time, participants had a strong need to control both their physical appearance and their changed bodily functions. Participants opted for education programs involving teachers with a stoma. ARTICLE 2: Learning to live with a Permanent Intestinal Ostomy: Impact on everyday life and Educational Needs. The study included 15 participants who were interviewed in groups related to whether they were treated for cancer or non-cancer. The results showed that participants often experienced the stoma as a taboo, and emotions related to stigma were identified. In addition, participants were influenced by the stoma in various ways, and the stoma imposed some restrictions on the participants. Participants pointed at group-based education, as well as the involvement of teachers who had a stoma. ARTICLE 3: Spouses of patients with a stoma lack information and support and are restricted in their social and sexual life: a systematic review. The study included 6 articles based on quantitative and qualitative data showing that spouses were affected in several ways by the construction of the stoma. The results pointed at spouses not being informed and supported sufficiently by neither enterostoma therapists or surgeons. ARTICLE 4: Patient education has a positive effect in patients with a stoma - a systematic review The study included 7 studies, all with quantitative results. They showed that patient education had a positive impact in several areas including shorter hospital stay, less time until proficiency in stoma management is reached, an increase in quality of life, increased knowledge about the stoma, and increased self-efficacy. ARTICLE 5: Health-related quality of life increases when patients with a stoma attend patient education - a case/control study. The study included 50 participants shortly after stoma creation. The results showed that the disease-specific quality of life was significantly increased in the intervention group, while generic health-related quality of life was positively affected in different dimensions in both groups. ARTICLE 6: Decreased costs with patient education after stoma creation. The study was an economic analysis based on participants in Article 5. The results indicated that there were fewer unplanned re-admissions related to the stoma, and that patients in the intervention group did not visit the general practitioner as much as patients in the control group. Furthermore, we found that the average cost per patient did not increase when establishing a patient education program. CONCLUSION: The thesis concludes that patient education has a positive impact on patients' quality of life, and that costs are reduced. At the same time, it is concluded that living with a stoma is a complex situation, which also involves spouses and close relatives, and that patient education must be based on multiple interventions that are not all explored in this project.

A feeling of flow: exploring junior scientists' experiences with dictation of scientific articles.

BACKGROUND: Science involves publishing results, but many scientists do not master this. We introduced dictation as a method of producing a manuscript draft, participating in writing teams and attending a writing retreat to junior scientists in our department. This study aimed to explore the scientists' experiences with this process. METHODS: Four focus group interviews were conducted and comprised all participating scientists (n = 14). Each transcript was transcribed verbatim and coded independently by two interviewers. The coding structure was discussed until consensus and from this the emergent themes were identified. RESULTS: Participants were 7 PhD students, 5 scholarship students and 2 clinical research nurses. Three main themes were identified: 'Preparing and then letting go' indicated that dictating worked best when properly prepared. 'The big dictation machine' described benefits of writing teams when junior scientists got feedback on both content and structure of their papers. 'Barriers to and drivers for participation' described flow-like states that participants experienced during the dictation. CONCLUSIONS: Motivation and a high level of preparation were pivotal to be able to dictate a full article in one day. The descriptions of flow-like states seemed analogous to the theoretical model of flow which is interesting, as flow is usually deemed a state reserved to skilled experts. Our findings suggest that other academic groups might benefit from using the concept including dictation of manuscripts to encourage participants' confidence in their writing skills.

Spouses of patients with a stoma lack information and support and are restricted in their social and sexual life: a systematic review.

PURPOSE: A permanent stoma has a large impact on everyday life with several physical, mental, and social impairments for the individual. It seems obvious that if persons with stomas are affected socially by the stoma creation, it is likely that the family and/or relatives will be affected as well. The objective of this systematic review was to explore how stoma creation may affect spouses of patients with stomas. METHODS: A systematic review was undertaken based on database searches including studies published from 1950 to 2012. We applied a method of synthesis based on narrative summaries of both qualitative and quantitative results being assessed in parallel processes and finally included in a joint synthesis of results on a study level. RESULTS: We identified 17 studies and included 6 studies. Spouses wanted to be more involved in the stoma education and specifically wanted more focus on the psychosocial aspects of stoma creation. Furthermore, spouses' sexual life was seriously affected, and their social life was restricted. In general, spouses wished for more support from the health care sector as well as from family and friends. CONCLUSIONS: There is a need for further research focusing on spouses or relatives. Talking about worries and concerns regarding the new life situation may alleviate suffering and reduce uncertainty. Stoma nurses and other health professionals play an important role in the care of patients as well as spouses, and a greater insight into the worries and concerns affecting spouses is warranted to improve postoperative counseling and education.

[Medical writers in medical research]. / Medical writers i medicinsk forskning.

Larger research units often comprise persons of several professions in order to secure a high level of efficiency and quality in the different tasks. In Denmark, employees with special competencies within the field of writing and publication are rarely used in research units. The purpose of this study was to present the advantages and challenges associated with the involvement of medical writers in academic environments.