Anne Kjaergaard Danielsen

Patients with decompensated liver cirrhosis constitute a growing and vulnerable patient group with a particular need for easy outpatient access and close follow-up. By establishing a nurse-led clinic, we aimed to counter this need in a patient-centered manner within a multidisciplinary rehabilitating framework. This article presents the organization, staffing, and structure of this initiative as well as the patient population demographics and characteristics. Furthermore, patient satisfaction within the clinic was explored. Two complementary substudies are presented: a descriptive, registry-based journal audit, presenting data from the clinic's first years, 2017–2019, and a cross-sectional, descriptive survey, exploring patient satisfaction 2 years later. Different visit types with predefined content constitute an operable structure suitable for meeting patients' current needs. An increase in both the number of patients and visits from the first to second years indicates an existing need for nurse-led support. Data not only support the well-known characteristics of patients with cirrhosis but also add to a broader perspective with more nuances for this patient population. The survey shows an overall high score on satisfaction but also points out areas for improvement. The nurse-led clinic provides both structure and knowledge to facilitate patient-centered treatment and care for those suffering from liver cirrhosis.

Purpose . Treatment of late complications is not systematically provided in Denmark. We therefore established a clinic to treat patients’ late complications. With this study, we wanted to explore patients’ experiences with treatment and care in such a clinic, including their recommendations for the future organization and structure of the clinic. Methods . We conducted a qualitative semistructured interview study with 14 patients who had attended a late complication clinic after treatment for colorectal or anal cancer. We used a descriptive approach to describe the patients’ experiences. Results . We found four major categories: (1) benefitting from the late complication clinic, (2) confusion about which clinic they attended, (3) recommendations for the future of the clinic, and (4) preparation and delivery of the consultations. Patients benefitted from attending the late complication clinic, and some experienced complete relief from symptoms. Others did not, but they gained hope that they might be able to receive treatment in the future. Patients wished for more information about late complications, preferring that the most common symptoms were described along with patient‐friendly treatment options. The patients were satisfied with telephone consultations, as they were easy to fit into a daily schedule, and patients found it easy to express themselves openly. Conclusions . Patients were satisfied with the late complication clinic as they felt it gave them a safety net. For the future, patients recommended provision of more information about late complications and possible treatments.

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.

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 motiva...

Purpose Physical activity is recommended to cancer survivors by the World Health Organisation (WHO) and is associated with improved survival after colorectal cancer. It remains unclear whether having a stoma is a barrier for an active lifestyle. We examined the level of physical activity and explored factors impacting physical activity in survivors with a stoma. Methods A total of 1265 (65%) patients in the Danish Stoma Database completed a multidimensional survey. Physical activity of moderate- and vigorous-intensity was assessed using two validated questions. Based on WHO guidelines, physical activity was categorised into ‘Meeting’ or ‘Not Meeting’ recommendations. Multivariate regression analysis, adjusting for potential confounders, provided odds ratio (OR) and 95% confidence intervals (CI) for factors’ association with’Not Meeting’ guideline recommendations. Results In total, 571 patients with colorectal cancer reported on physical activity at a median of 4.3 years (interquartile range 3.1–5.8) after stoma surgery. Two hundred ninety-three patients (51%) were ‘Meeting recommendations’ and 63% of them were ‘Highly active’. Two hundred seventy-eight were ‘Not meeting’ recommendations (49%). Of the factors analysed, patients without support garment were more likely (OR 1.72 [95% CI 1.16; 2.54] not to meet guideline recommendations. We found no association between stoma type, surgical procedure, parastomal bulging and ‘problematic stoma’ and level of physical activity, respectively. Conclusion In this large sample of survivors with a stoma half of patients met or exceeded guideline recommendations. Of patients not meeting recommendations some could potentially meet the recommendations by modest increases in either moderate or vigorous activity.

Introduction: Colonoscopy remains the reference standard for diagnosing and monitoring colorectal cancer and for diagnosis and surveillance of inflammatory bowel disease. However, there is a limited knowledge of the patients’ needs when undergoing colonoscopy and the challenges within in order to reduce the number of cancelled colonoscopies. The purpose of the study was to explore the experiences of undergoing bowel preparation and colonoscopy. Methods: The study was designed as a qualitative longitudinal interview study with an inductive research approach. Patients were considered for inclusion consecutively and selected based on the following criteria of variation: way of referral for colonoscopy (outpatient or screening), age and gender. The interviews were analyzed using qualitative content analysis, and results reported according to COREQ guidelines. Results: Based on the findings, three categories emerged: To weigh up participation, A greater challenge than expected, and Not so challenging after all. Throughout these categories, the experience of uncertainty was reported. Discussion: The process of undergoing bowel preparation and colonoscopy was influenced by uncertainty due to insufficient information. There is a need to strengthen the patient-centered care by adjusting the information to patient’s needs to better support them in decision-making for participation, to better prepare them for the bowel preparation and to better prepare them for the procedure. In addition, it is vital that patients are provided with results of the colonoscopy that correspond to the timeframe specified in written information.

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 mo...

Aim: The aim of this work was to examine (1) the incidence of primary repair, (2) the incidence of recurrent repair and (3) the types of repair performed in patients with parastomal bulging.Method: Prospectively collected data on parastomal bulging from the Danish Stoma Database were linked to surgical data on repair of parastomal bulging from the Danish National Patient Register. Survival statistics provided cumulative incidences and time until primary and recurrent repair.Results: In the study sample of 1016 patients with a permanent stoma and a parastomal bulge, 180 (18%) underwent surgical repair. The cumulative incidence of a primary repair was 9% [95% CI (8%; 11%)] within 1 year and 19% [95% CI (17%; 22%)] within 5 years after the occurrence of a parastomal bulge. We found a similar probability of undergoing primary repair in patients with ileostomy and colostomy. For recurrent repair, the 5‐year cumulative incidence was 5% [95% CI (3%; 7%)]. In patients undergoing repair, the probability was 33% [95% CI (21%; 46%)] of having a recurrence requiring repair within 5 years. The main primary repair was open or laparoscopic repair with mesh (43%) followed by stoma revision (39%). Stoma revision and repair with mesh could precede or follow one another as primary and recurrent repair. Stoma reversal was performed in 17% of patients.Conclusion: Five years after the occurrence of a parastomal bulge the estimated probability of undergoing a repair was 19%. Having undergone a primary repair, the probability of recurrent repair was high. Stoma reversal was more common than expected.

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.