| 1. |
- Härle, Karolina, 1980-
(författare)
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Enterocutaneous fistula : Patients', families' and healthcare professionals' experiences - epidemiology and outcomes
- 2023
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: Enterocutaneous fistula is a rare and complex condition with high morbidity. The condition causes multiple health problems, and it is both physically and psychologically demanding for the affected person and their families. Infection, fistula wound care challenges, electrolyte and fluid imbalance, and malnutrition render the individual in need of long periods of in-hospital care and homecare. This also places great demands on healthcare professionals and knowledge among healthcare professionals can be lacking. The patients have different needs and person-centred care is one way to promote individualised care based on the patient’s specific needs. Research about how enterocutaneous fistula affects the individual and their families is scarce, and healthcare professionals often have little experience providing care for these patients. There is also a lack of population-based studies on enterocutaneous fistula.Aim: The overall aims of the thesis were to explore patients’, family members’ and healthcare professionals’ experiences of enterocutaneous fistula, and to define the cohort of patients who developed an enterocutaneous fistula within a ten-year period in the southeast healthcare region of Sweden.Methods: This thesis is based on four studies and includes individual, dyadic, and focus group interviews as well as a retrospective study of medical records. The first study had a qualitative inductive design with individual in-depth interviews of nine patients with experience of living with an enterocutaneous fistula. The analysis was conducted using descriptive phenomenology according to Giorgi. The second study had a longitudinal qualitative design with in-depth dyadic interviews with seven dyads consisting of one patient and one close family member. The dyads were interviewed on three different occasions: before, shortly after and one year after reconstructive surgery. A phenomenological-hermeneutic analysis according to Lindseth and Norberg was performed. The third study had a qualitative descriptive design with five focus group interviews of healthcare professionals and the data were analysed using qualitative content analysis. The fourth study was a population-based cohort study with 187 participants and a retrospective review of medical records was performed.Result: Living with an enterocutaneous fistula meant facing an unpredictable life for months or years that causes several limitations in daily life for both the patients and their family members. Fear of leakage from the fistula appliance and dependency on intravenous supplementation caused social isolation. Both the patients and the family members struggled with psychological distress and support from the healthcare professionals was important. There were both positive and negative experiences of the provided healthcare. Lack of knowledge and understanding among the healthcare professionals affected the patients’ and families trust in the healthcare. Despite all, they were hopeful for the future and looked forward to having a life without the fistula.Providing care for patients with enterocutaneous fistula was complex, and time- and resource-consuming. The healthcare professionals struggled with different practical issues and providing care for these patients required an integrated approach involving different disciplines. Building long-lasting relationships with patients and their families was fundamental to the caring process.The annual incidence of enterocutaneous fistula was 1.87 per 100.000 persons. Cumulative enterocutaneous fistula related in-hospital care, until closure or end of follow-up, was median 4 (range 0–61) weeks. Thirty-seven per cent of the patients needed parenteral supplementation and 80% needed help with fistula wound care. Home-based healthcare, i.e., fistula wound care, resources for parenteral feeding and access to 24-hour emergency wound care at home, was provided to 42.2% of the patients. Estimated overall mortality at one, three, and five years was 33.7%, 42.1%, and 47.6%, respectively. Mortality was dominated by patients who did not have spontaneous closure of the enterocutaneous fistula or undergo reconstructive surgery.Conclusions: Enterocutaneous fistula is a serious condition with a high overall mortality and the patients need a lot of healthcare resources. The condition restricts the patient’s and family’s daily life and leads to social isolation and psychological distress. By promoting person-centred care and patient participation, the healthcare professionals can strengthen autonomy in daily life and improve the patient’s ability to cope with the situation. Regular team meetings of the multidisciplinary team, careful planning before discharge and providing person-centred care can facilitate the care process for everyone involved.
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| 2. |
- Matthiessen, Peter, 1957-
(författare)
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Rectal cancer surgery : Defunctioning stoma, anastomotic leakage and postoperative monitoring
- 2006
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The understanding of the mesorectal spread in rectal cancer has lead to wide acceptance of total mesorectal excision (TME) as the surgical technique of choice for carcinoma in the lower and mid rectum. While oncological results and survival have improved with TME-surgery, morbidity and mortality remain important issues. The most feared complication is symptomatic anastomotic leakage. The aim of this thesis was to focus on the role of the defunctioning stoma, risk factors, and postoperative monitoring in regard to anastomotic leakage in sphincter saving resection of the rectum.Intraoperative adverse events were analysed in a retrospective population based case-control study in which all patients who underwent elective anterior resection in Sweden between 1987 and 1995, and who died within 30 days or during the initial hospital stay (n=140), were compared with patients chosen at random (n=423) who underwent the same operation during the same period, but survived the operation. Intraoperative adverse events were more frequent in those who died, and reconstruction of an anastomosis judged unsatisfactory by the surgeon improved the outcome.In a population based retrospective case-control study, risk factors for symptomatic anastomotic leakage were investigated in randomly chosen sample of patients who underwent anterior resection in Sweden between 1987 and 1995 (n=432). Twelve per cent of the patients developed symptomatic leakage, and 25% of the patients with leakage ended up with a permanent stoma. In multivariate regression analysis, low anastomosis, preoperative radiotherapy, male gender and intraoperative adverse events were independent riskfactors for anastomotic leakage.In a randomised multicentre trial patients operated with sphincter saving TME¨surgery for rectal cancer were randomised to a defunctioning stoma (n=116) or not (n=118). The overall rate symptomatic leakage was 19%. Patienst without a defunctioning stoma leaked in 28% and patients with a defunctioing stoma in 10%, a statistically significant difference (p<0.001) not previously demonstrated in any randomised trial of adequate size.Postoperative monitoring with computed tomography scan (CT-scan) on postoperative day 2 and 7, and C-reactive protein (CRP) daily in 33 patients operated on with anterior resection of the rectum, demonstrated larger pelvic fluid collections in patients with leakage before the leakage was clinically diagnosed. CRP was increased from postoperative day 2 and onwards in patients in whom clinical leakage was diagnosed on median postoperative day 8.In 23 patients who underwent anterior resection of the rectum, intraperitoneal metabolism was investigated using microdialysis technique measuring the carbohydrate metabolites lactate, pyruvate and glucose. Intraperitoneal cytokines IL-6, IL-10 and TNF-α were collected through a pelvic drain and analysed. In patients who developed leakage, the latate/pyruvate ratio was increased near the anastomosis on postoperative day 5 and 6, as well as IL-6 and IL-10 which were increased postoperatively day 1 and 2, while TNF-α was higher on day 1.
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| 3. |
- Risto, Anton, 1984-
(författare)
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Reconstruction after Colectomy for Inflammatory Bowel Disease
- 2024
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- After colectomy there are four options available. The least complicated and most common is to leave the end ileostomy and not go for any reconstructive surgery. Then there is the ileal pouch anal anastomosis (IPAA) in which the rectum is removed, but the anal canal and a small rectal “cuff” is preserved. The pouch is created from the distal ileum and anastomosed to the rectal cuff. In the ileorectal anastomosis (IRA) the rectum is spared, and the distal ileum is anastomosed to the top of the rectum. In the continent ileostomy (CI), also referred to as the Kock pouch, the fecal flow is let out through the abdominal wall, but a pouch and a nipple valve mechanism is created making the stoma continent which needs to be manually emptied. This thesis aims to investigate function, quality of life, satisfaction, complications, and aspects associated with the chance of having reconstructive surgery after colectomy for inflammatory bowel disease (IBD), i.e. ulcerative colitis (UC) or Crohn’s disease (CD).The first two papers focus on the continent ileostomy, the most uncommon of the options after colectomy. In Paper 1 all patients who have received a CI at our center were identified and medical charts were reviewed for complications and CI patency. Function and quality of life were evaluated with the 36-item short form survey (SF-36), short health scale (SHS) and a local CI specific questionnaire for function and satisfaction. In Paper II, the Swedish national patient register (NPR) was used to identify all patients with an IBD diagnosis who had received a CI and data on diagnosis, demographics, reoperations, and excisions were obtained from the register. Paper III describes an ongoing prospective non-randomized, multi-center, open-label, controlled trial between IRA and IPAA in UC patients subjected to colectomy. The primary endpoint is satisfaction but Quality of Life (QoL), sexual function, bowel function and complications are also evaluated. In Paper IV, we investigated if the chance of getting reconstructed after colectomy was dependent on the IPAA volumes at the colectomy hospital using data from the national patient register. The hospitals were arranged in to four categories based on the average annual number of IPAA procedures: (0, 1-3, 4-7, >7 procedures per year). In Paper I we found that 59 % of CI patients needed repeat laparotomy after a median follow up of 24 years and nipple detachment was the most common cause of repeat laparotomy. Fifteen patients (18 %) had their CIs converted to end ileostomies and the most common cause for this was fistulas. Eighty-four per cent of CI patients reported satisfaction with their reconstruction. The national study in Paper II identified 727 IBD patients with CI and the median follow-up time was 27 years. During follow-up, 1484 reoperations were performed on 536 patients (74 %). Twenty-six per cent of the patients did not have any reoperations, 24 % had one reoperation, 20 % had two reoperations and the remaining 30 % had between three and 15 reoperations each. The CIs were identified to have been removed in 77 (11 %) patients. In Paper III we have so far included 47 patients in the intervention arms out of which 35 (74 %) have chosen IRA and 12 patients (26 %) have chosen IPAA. Another 44 (40 % of the whole group) patients have so far received an IPAA but were deemed non-eligible for both IRA and IPAA and were hence not eligible for the intervention arms. So far 18 patients (17 % of the whole group) have chosen an ileostomy. In Paper IV we first identified 4112 UC patients subjected to colectomy between 1997 and 2020. Out of these 4112 patients, 1932 (47 %) went through some kind of reconstruction, 964 (50 %) IRA, 927 (48 %) IPAA and 41 (2 %) CI. The proportion having restorative surgery was larger for patients subjected to colectomy at a high IPAA volume center (62 % vs 38 %) and the chance of getting an IPAA increased with each IPAA volume category (Hazard ratios (HR) were: 1; 1.49 95 % CI (1.25-1.78) ; 1.79 95 % CI (1.49-2.15) and 2.11 95 % CI (1.70-2.62) respectively)The IPAA volumes did not affect the chance of receiving an IRA or the risk of failure of reconstruction.
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| 4. |
- Danielson, Johan, 1975-
(författare)
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Anorectal Malformations : Long-term outcome and aspects of secondary treatment
- 2015
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Faecal incontinence (FI) is defined as the inability to control bowel movements. The causes of FI are many and diverse. One of the more uncommon reasons for FI is Anorectal Malformations (ARMs). An ARM is a congenital anomaly that affects somewhere between 1/2500 and 1/5000 live born babies. Many ARM patients have persistent FI. Several different procedures have been utilised to address this issue. This thesis aims to evaluate (1) the long-term outcome in adulthood of ARMs in relation to the modern Krickenbeck classification, and (2) scope for treating FI with transanal injection with dextranomer in non-animal stabilised hyaluronic acid (NASHA/Dx), in patients both with and without ARMs.All patients treated for ARMs in Uppsala up to 1993 were invited to participate in a questionnaire study of quality of life and function. The study included 136 patients and compared them with 136 age- and sex-matched controls. The Krickenbeck classification was found to predict functional outcome, and ARM patients had more problems with incontinence and obstipation, as well as inferior Quality of Life (QoL), compared with controls. Thirty-six patients with FI, owing to causes other than ARMs, were treated with transanal submucous injection of NASHA/Dx. The patients were monitored for two years after treatment. Significant reductions in both their incontinence score and the number of their incontinence episodes were achieved. A significant improvement in QoL was observed in patients who had at least a 75% reduction in incontinence episodes. No serious complications occurred.A prospective study of transanal injection of NASHA/Dx was conducted on seven patients with persistent FI after ARMs. After six months a significant reduction in the number of incontinence episodes was obtained. A significant improvement in QoL was also found. No serious complications occurred.In conclusion, adult patients with ARMs have inferior outcome of anorectal function and QoL compared with controls. NASHA/Dx is effective and appears to be safe in treating FI in general. This effect seems to be the same in selected patients with persistent FI after ARMs.
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| 5. |
- Loftås, Per, 1964-
(författare)
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Response to neoadjuvant treatment in rectal cancer surgery
- 2016
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Rectal cancer is one of the three most common malignancies in Sweden with an annual incidence of about 2000 cases. Current treatment consists of surgical resection of the rectum including the loco-regional lymph nodes in the mesorectum. In advanced cases, neoadjuvant chemo-radiotherapy (CRT) prior to the operative treatment reduces local recurrences and enables surgery. The neoadjuvant treatment can also eradicate the tumour completely, i.e. complete response. This research project was designed to investigate the effects of preoperative radiotherapy/ CRT and analyze methods to predict response to CRT.Study I investigated the expression of the FXYD-3 protein with immunohistochemistry in rectal cancer, with or without preoperative radiotherapy. The results from the total cohort showed that, strong FXYD-3 expression was correlated to infiltrative tumour growth (p = 0.02). In the radiotherapy group, strong FXYD-3 expression was related to an unfavourable prognosis (p = 0.02). Tumours with strong FXYD-3 expression had less tumour necrosis (p = 0.02) after radiotherapy. FXYD-3 expression in the primary tumour was increased compared to normal mucosa (p=0.008). We concluded that FXYD-3 expression was a prognostic factor in patients receiving preoperative radiotherapy for rectal cancer.Study II investigated FXYD-3 expression in tumours that developed local recurrences following surgery and compared this with expression in tumours that did not develop local recurrences. There was no difference in the expression of FXYD-3 between the group that developed local recurrences and the group that did not develop local recurrences. There was no difference in survival between those with strong or weak FXYD-3 expression. We concluded that this study could not confirm the findings from study 1 i.e. that FXYD-3 expression has prognostic significance in rectal cancer.Study III was a register-based study on the incidence and effects of complete response to neoadjuvant treatment. Eight per cent of the patients with adequate CRT to achieve complete response also had a complete histological response of the luminal tumor in the resected bowel. Sixteen per cent of that group had remaining lymph node metastases in the operative specimen. Chemotherapy together with radiotherapy doubled the chance of complete response in the luminal tumour. Patients with remaining lymph node metastases had a lower survival rate compared to those without. We concluded that residual nodal involvement after neoadjuvant treatment was an important factor for reduced survival after complete response in the luminal tumour.Study IV followed up the results from the previous study by re-evaluating magnetic resonance imaging (MRI)- images in patients with complete tumour response. Two experienced MRI radiologists performed blinded re-staging of post CRT MR- images from patients with complete response in the luminal tumour. One group with lymph node metastases and another one without were studied and the results compared with the pathology reports. The sensitivity, specificity, and positive and negative predicted values for correct staging of positive lymph nodes was 37%, 84%, 70% and 57%. The size of the largest lymph node (4.5 mm, p=0.04) seemed to indicate presence of a tumour positive lymph node. We concluded that MRI couldn’t correctly stage patients for lymph node metastases in patients with complete response to CRT in the luminal tumour.
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| 6. |
- Floodeen, Hannah, 1981-
(författare)
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Defunctioning stoma in low anterior resection of the rectum for cancer : Aspects of stoma reversal, anastomotic leakage, anorectal function, and cost-effectiveness
- 2016
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Rectal cancer is a common malignancy treated with surgical resection and curative intent in the majority of cases. One treatment option is low anterior resection (LAR) with preserved bowel continuity, often involving the formation of a temporary defunctioning stoma (DS).The general aim of this thesis was to improve understanding of the role of DS in rectal cancer surgery with regard to timing of stoma reversal and development of anastomotic leakage (AL), impact on long-term anorectal function (AF), as well as aspects of cost-effectiveness.Study I addressed the timing of stoma reversal following LAR. We found that 19% of reversed patients were reversed within 4 months of LAR, while 81% of reversals were delayed. In 58% of delayed reversals the delay was due to low priority on surgical waiting lists.Studies II-IV were based on 234 patients randomized to receive a DS or no DS following LAR. Study II compared patients with AL following LAR diagnosed during the initial hospital stay (early leakage, EL) with patients diagnosed after hospital discharge (late leakage, LL). LL was more common in females, and originated more frequently from the transverse stapler line. EL was more common in males, and originated more frequently from the circular stapler line. Study III assessed AF 5 years after LAR with regard to whether patients initially had a DS or no DS. We found no difference in AF between the two randomized groups. When comparing with a 1-year follow-up in the same patient cohort, there were no further changes in AF over time. Study III assessed necessary healthcare resources and cost within 5 years of LAR, depending on whether patients initially had a DS or no DS. The overall cost analysis revealed a higher cost for patients randomized to DS, regardless of the cost-savings associated with a reduced frequency of anastomotic leakage.
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| 7. |
- Härle, Karolina, 1980-, et al.
(författare)
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Putting life on hold : A longitudinal phenomenological-hermeneutic study of living with [or close to someone with] an enterocutaneous fistula before and after reconstructive surgery
- 2023
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Ingår i: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 32:15-16, s. 4663-4676
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Tidskriftsartikel (refereegranskat)abstract
- Aims and Objectives Illuminate meanings of living with [or close to someone with] an enterocutaneous fistula before and after reconstructive surgery. Background Enterocutaneous fistula is a serious condition affecting the well-being and social life of both patients and families, sometimes for several years. Design A longitudinal qualitative design. Methods Patients and families (n = 14) were followed with dyadic interviews at three occasions, conducted 2017-2020. The interviews were analysed with a phenomenological-hermeneutic approach. COREQ guidelines were followed. Result Living with an enterocutaneous fistula was explained as life being put on hold, while living in a bubble for an uncertain time. This bubble meant facing an unpredictable and restricted life where the dyads were forced to take control over the situation despite being vulnerable inside, striving to resume normality. The patients dealt with never-ending symptoms such as leakage from the fistula, pain and fatigue, while the family supported with practical matters and just being close. Dependency on intravenous fluids resulted in social isolation, which caused mode swings and depressiveness. In this situation, healthcare professionals often became a substitute for other interactions, but the lack of understanding about the dyads situation, affected their trust in the healthcare. Despite all, they still had belief in the future, the patients having higher expectations than the family. Conclusions Living with an enterocutaneous fistula meant a daily life struggling with many limitations. This implies that the transition was associated with difficulties and the dyads strived to accept their situation. Relevance to Clinical Practice The findings indicate that these patients must be cared for with a multidisciplinary approach. A person-centred health plan could impact on the dyads feeling of control and thereby making them less dependent on healthcare. Every patient should have their own contact nurse and be offered psychological support. No Patient or Public Contribution Not applicable due to the current method.
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