Stomas from a rural perspective : an evaluation of characteristics, differences and improvement opportunities

Introduction: Stoma-related complications are common and consequences for the individual patient may be considerable. In rural areas, competence regarding stoma-related problems is largely absent. Since the aim of a publicly funded healthcare system is good healthcare on equal terms regardless of where one lives, studies evaluating differences and possible areas of improvement in rural areas are important. An evaluation of stoma-related characteristics, geographic differences and improvement opportunities from a rural perspective has not been done previously. The characteristics and differences studied in this thesis are: stoma reversal; occurrence of permanent stoma; and quality-of-life (QoL). Methods: Epidemiological methods applied to register data were used in Study I. Data extracted from the National Rectal Cancer Register together with socioeconomic data from Statistics Sweden were used. Study II was a cross-sectional study using surveys matched with data from the National Rectal Cancer Register. Study III was based on data from a double-blind randomised controlled trial. Patients were randomised to either a prophylactic mesh or no mesh in order to prevent parastomal hernia (PSH). Quality-of-life was assessed by grouping and comparing results of questionnaires answered by the patients included. In Study IV, a qualitative explorative method was applied to describe the quality of life of rural living stoma patients. Qualitative content analysis was used to analyse data. Aims and Results: Study I investigated whether distance by road to hospital had an impact on the following outcomes: stoma reversal rate; time from index operation to stoma reversal; and occurrence of permanent stoma after rectal cancer surgery. Longer distance to hospital had no effect on these outcomes in a multivariate model. In the univariate logistic regression model results indicated the opposite; patients living closest to the operating hospital had a higher likelihood of no reversal (OR 0.3; 95% CI 0.12–0.76). In northern Sweden, 77 % of all stoma reversals were delayed more than 6 months after index surgery. Stoma reversal was performed up to 1557 days after index surgery, and the shortest time to reversal was 82 days (median 287 days). Study II investigated the impact of distance to nearest hospital on the QoL of rectal cancer patients who had received a stoma at index surgery. Patients living in rural areas reported more pain and sore skin compared to those living closer. When only considering patients who still had a stoma, global QoL was reduced and stoma-related problems were also affected negatively in the rural group. Study III Investigated whether a prophylactic mesh when creating an end colostomy affected QoL. No effect on global QoL was seen at one-year follow up. In several other QoL-parameters mesh patients scored superior compared to non-mesh patients, even when excluding those with a parastomal hernia (PSH). Study IV investigated experiences of living with a stoma in a rural setting, how the process of seeking healthcare was experienced and the problems that occur. Results show that living with a stoma was experienced as a process; an initial sense of hopelessness, especially when suffering from stoma-related problems, progressing to the crucial acceptance of their situation. Stoma leakage was frequently described and experienced as unpleasant and unpredictable. Experiences of seeking healthcare in a rural district varied, some spoke warmly about the care given at the cottage hospital while other expressed dissatisfaction. Conclusions: The notably high rate of delayed reversal of a defunctioning stoma in northern Sweden leads to unnecessary suffering for patients. In view of the long delay in reversal times seen, future studies must have considerably longer follow-up. Rural living rectal cancer patients who receives a stoma reported more pain than those living closer to the nearest hospital. Rectal cancer patients who still had a stoma reported an inferior quality-of-life and more stoma-related problems compared to their town counterparts. Results from the studies in this thesis show that the use of a prophylactic mesh when forming an end colostomy has no impact on subsequent global QoL. Rural living stoma patients commonly experience problems related to their stoma that affect their everyday living. Improved patient education shortly after receiving a stoma could help these patients in coming to terms with their situation

Stomas from a rural perspective : an evaluation of characteristics, differences and improvement opportunities

Introduction: Stoma-related complications are common and consequences for the individual patient may be considerable. In rural areas, competence regarding stoma-related problems is largely absent. Since the aim of a publicly funded healthcare system is good healthcare on equal terms regardless of where one lives, studies evaluating differences and possible areas of improvement in rural areas are important. An evaluation of stoma-related characteristics, geographic differences and improvement opportunities from a rural perspective has not been done previously. The characteristics and differences studied in this thesis are: stoma reversal; occurrence of permanent stoma; and quality-of-life (QoL). Methods: Epidemiological methods applied to register data were used in Study I. Data extracted from the National Rectal Cancer Register together with socioeconomic data from Statistics Sweden were used. Study II was a cross-sectional study using surveys matched with data from the National Rectal Cancer Register. Study III was based on data from a double-blind randomised controlled trial. Patients were randomised to either a prophylactic mesh or no mesh in order to prevent parastomal hernia (PSH). Quality-of-life was assessed by grouping and comparing results of questionnaires answered by the patients included. In Study IV, a qualitative explorative method was applied to describe the quality of life of rural living stoma patients. Qualitative content analysis was used to analyse data. Aims and Results: Study I investigated whether distance by road to hospital had an impact on the following outcomes: stoma reversal rate; time from index operation to stoma reversal; and occurrence of permanent stoma after rectal cancer surgery. Longer distance to hospital had no effect on these outcomes in a multivariate model. In the univariate logistic regression model results indicated the opposite; patients living closest to the operating hospital had a higher likelihood of no reversal (OR 0.3; 95% CI 0.12–0.76). In northern Sweden, 77 % of all stoma reversals were delayed more than 6 months after index surgery. Stoma reversal was performed up to 1557 days after index surgery, and the shortest time to reversal was 82 days (median 287 days). Study II investigated the impact of distance to nearest hospital on the QoL of rectal cancer patients who had received a stoma at index surgery. Patients living in rural areas reported more pain and sore skin compared to those living closer. When only considering patients who still had a stoma, global QoL was reduced and stoma-related problems were also affected negatively in the rural group. Study III Investigated whether a prophylactic mesh when creating an end colostomy affected QoL. No effect on global QoL was seen at one-year follow up. In several other QoL-parameters mesh patients scored superior compared to non-mesh patients, even when excluding those with a parastomal hernia (PSH). Study IV investigated experiences of living with a stoma in a rural setting, how the process of seeking healthcare was experienced and the problems that occur. Results show that living with a stoma was experienced as a process; an initial sense of hopelessness, especially when suffering from stoma-related problems, progressing to the crucial acceptance of their situation. Stoma leakage was frequently described and experienced as unpleasant and unpredictable. Experiences of seeking healthcare in a rural district varied, some spoke warmly about the care given at the cottage hospital while other expressed dissatisfaction. Conclusions: The notably high rate of delayed reversal of a defunctioning stoma in northern Sweden leads to unnecessary suffering for patients. In view of the long delay in reversal times seen, future studies must have considerably longer follow-up. Rural living rectal cancer patients who receives a stoma reported more pain than those living closer to the nearest hospital. Rectal cancer patients who still had a stoma reported an inferior quality-of-life and more stoma-related problems compared to their town counterparts. Results from the studies in this thesis show that the use of a prophylactic mesh when forming an end colostomy has no impact on subsequent global QoL. Rural living stoma patients commonly experience problems related to their stoma that affect their everyday living. Improved patient education shortly after receiving a stoma could help these patients in coming to terms with their situation

Stomas from a rural perspective : an evaluation of characteristics, differences and improvement opportunities

Introduction: Stoma-related complications are common and consequences for the individual patient may be considerable. In rural areas, competence regarding stoma-related problems is largely absent. Since the aim of a publicly funded healthcare system is good healthcare on equal terms regardless of where one lives, studies evaluating differences and possible areas of improvement in rural areas are important. An evaluation of stoma-related characteristics, geographic differences and improvement opportunities from a rural perspective has not been done previously. The characteristics and differences studied in this thesis are: stoma reversal; occurrence of permanent stoma; and quality-of-life (QoL). Methods: Epidemiological methods applied to register data were used in Study I. Data extracted from the National Rectal Cancer Register together with socioeconomic data from Statistics Sweden were used. Study II was a cross-sectional study using surveys matched with data from the National Rectal Cancer Register. Study III was based on data from a double-blind randomised controlled trial. Patients were randomised to either a prophylactic mesh or no mesh in order to prevent parastomal hernia (PSH). Quality-of-life was assessed by grouping and comparing results of questionnaires answered by the patients included. In Study IV, a qualitative explorative method was applied to describe the quality of life of rural living stoma patients. Qualitative content analysis was used to analyse data. Aims and Results: Study I investigated whether distance by road to hospital had an impact on the following outcomes: stoma reversal rate; time from index operation to stoma reversal; and occurrence of permanent stoma after rectal cancer surgery. Longer distance to hospital had no effect on these outcomes in a multivariate model. In the univariate logistic regression model results indicated the opposite; patients living closest to the operating hospital had a higher likelihood of no reversal (OR 0.3; 95% CI 0.12–0.76). In northern Sweden, 77 % of all stoma reversals were delayed more than 6 months after index surgery. Stoma reversal was performed up to 1557 days after index surgery, and the shortest time to reversal was 82 days (median 287 days). Study II investigated the impact of distance to nearest hospital on the QoL of rectal cancer patients who had received a stoma at index surgery. Patients living in rural areas reported more pain and sore skin compared to those living closer. When only considering patients who still had a stoma, global QoL was reduced and stoma-related problems were also affected negatively in the rural group. Study III Investigated whether a prophylactic mesh when creating an end colostomy affected QoL. No effect on global QoL was seen at one-year follow up. In several other QoL-parameters mesh patients scored superior compared to non-mesh patients, even when excluding those with a parastomal hernia (PSH). Study IV investigated experiences of living with a stoma in a rural setting, how the process of seeking healthcare was experienced and the problems that occur. Results show that living with a stoma was experienced as a process; an initial sense of hopelessness, especially when suffering from stoma-related problems, progressing to the crucial acceptance of their situation. Stoma leakage was frequently described and experienced as unpleasant and unpredictable. Experiences of seeking healthcare in a rural district varied, some spoke warmly about the care given at the cottage hospital while other expressed dissatisfaction. Conclusions: The notably high rate of delayed reversal of a defunctioning stoma in northern Sweden leads to unnecessary suffering for patients. In view of the long delay in reversal times seen, future studies must have considerably longer follow-up. Rural living rectal cancer patients who receives a stoma reported more pain than those living closer to the nearest hospital. Rectal cancer patients who still had a stoma reported an inferior quality-of-life and more stoma-related problems compared to their town counterparts. Results from the studies in this thesis show that the use of a prophylactic mesh when forming an end colostomy has no impact on subsequent global QoL. Rural living stoma patients commonly experience problems related to their stoma that affect their everyday living. Improved patient education shortly after receiving a stoma could help these patients in coming to terms with their situation

Rectal cancer patients from rural areas in northern Sweden report more pain and problems with stoma care than those from urban areas

INTRODUCTION: Having a stoma after bowel surgery is associated with inferior quality of life (QoL). The county of Västerbotten in Sweden is a large and sparsely populated area. Competence regarding stoma-related problems is restricted to hospital-based stoma nurses and surgeons. Patients living in rural areas instead largely rely on their general practitioner. The purpose of the study was to investigate the impact of distance to nearest hospital on the QoL of rectal cancer patients who receive a stoma at index surgery. METHODS: A cross-sectional study performed in Västerbotten county, Sweden. Validated questionnaires assessing QoL (EORTC QLQ C-30 and CR-29) were sent to all rectal cancer patients diagnosed in 2007-2014 who received a stoma at index surgery. Socioeconomic variables were retrieved from Statistics Sweden. Distance from home to the nearest hospital was determined using Google Maps™. The effect of distance was assessed using two separate models, the first based on distance to the nearest hospital and the second based on access to a stoma care nurse. Within the first model all patients living in rural areas constituted the study group while all patients living in non-rural areas constituted the control group. Within the second model all patients with no access to stoma care nurse constituted the study group while those with such access constituted the control group. RESULTS: The response rate was 69%. In the first model the rectal cancer patients living further away from the nearest hospital reported significantly more pain and sore skin (p=0.032 and p=0.003, respectively). When considering patients who still had a stoma, those living further away also reported more stoma care problems (p=0.004) and a poorer global QoL (p=0.038). In the second model, access or not to a stoma care nurse had no impact on stoma care problems or QoL. CONCLUSION: Rectal cancer patients receiving a stoma at index surgery and who came from rural areas reported more pain than those living closer to the nearest hospital. The group of rural patients who still had a stoma also reported more stoma care problems and a poorer quality of life. To help these patients, general practitioners are encouraged to arrange an extra follow-up visit focusing on the individual patient's problems.Originally included in thesis in manuscript form. Financial support was received by regional agreement between Umeå University and Västerbotten County Council (VLL-675981), grants from Lion's Cancer Research Foundation, Umeå University and Visare Norr</p

Long distance to hospital is not a risk factor for non-reversal of a defunctioning stoma

PURPOSE: To see if road distance to hospital influences stoma reversal rate, time from index operation to stoma reversal, and occurrence of permanent stoma. METHODS: Data from all diagnosed cases of rectal cancer from three counties in northern Sweden were extracted from the Swedish Rectal Cancer Registry. The three counties are sparsely populated, with a population density roughly one fifth the average density in Sweden. Distances to nearest, operating, and largest hospital were obtained using Google Maps™. Matched data on socioeconomic variables were retrieved from Statistics Sweden. RESULTS: In univariate logistic regression analysis, patients living closer to the operating hospital had a higher likelihood of non-reversal than those living farther away (OR 0.3; 95% CI 0.12-0.76). However, no difference was seen in the multivariate analysis. Of the 717 cases included, 54% received a permanent stoma and 38% a defunctioning stoma at index surgery. The reversal rate of a defunctioning stoma was 83%. At follow-up, 61% still had a stoma, 89% of these were permanent, and 11% non-reversed defunctioning stomas. Median time to stoma reversal was 287 days (82-1557 days). Of all 227 stoma reversals, 77% were done more than 6 months after index surgery. CONCLUSIONS: Longer distance to hospital is not a risk factor for non-reversal of a defunctioning stoma. Only 23% had their defunctioning stoma reversed within 6 months after index surgery. Future studies aiming to determine reversal rate need to extend their follow-up time in order to receive accurate results

Quality of life after end colostomy without mesh and with prophylactic synthetic mesh in sublay position : one-year results of the STOMAMESH trial

Purpose: To determine whether prophylactic mesh in a sublay position has an impact on the quality-of-life (QoL) of patients receiving an end colostomy. Methods: One-year follow-up of patients from the STOMAMESH trial, a randomized controlled double-blinded multicenter study. Patients were randomized to either prophylactic synthetic mesh with a cruciform incision in the center, placed in sublay position, or no prophylactic mesh. Patients attended a 1-year visit and responded to the questionnaires EORTC QLQ C-30 and CR-38. The impact of having a mesh on QoL was determined by comparing a group of patients receiving a mesh with a group without. A subgroup analysis was made depending on whether a PSH was clinically present or not. Results: Of the 232 randomized patients, 211 patients reached the 1-year clinical follow-up. The response rate of these 211 patients was 70%. No differences were seen in global QoL between the groups. Mesh patients reported significantly less stoma-related problems (p = 0.014) but more sexual problems in males (p = 0.022). When excluding patients with a clinical diagnosis of PSH, the difference in stoma-related problems remained while no significant difference was seen regarding sexual problems in males. Conclusions: When forming an end colostomy, prophylactic synthetic mesh in a sublay position did not affect global QoL at 1-year follow-up, but stoma-related problems were fewer even in the presence of a clinically diagnosed PSH

Patients’ experiences of living with a stoma in rural areas in Northern Sweden

ABSTRACTIntroduction: Stoma complications are common and interfere with many aspects of everyday life. Stoma problems are usually managed by a specialised stoma nurse, a service not present in the rural areas of South Lapland in Sweden. The aim of this study was to describe how stoma patients in rural areas experience living with a stoma.Methods: A qualitative descriptive study with semi-structured interviews were conducted with 17 stoma patients living in rural municipalities and who received a part of their care at the local cottage hospital. Qualitative content analysis was employed.Results: Initially, the stoma was experienced as very depressing. Participants had difficulties in properly managing the dressing. Over time they learned how to properly care for their stoma, making their life easier. Both satisfaction and dissatisfaction with the healthcare were experienced. Those who were dissatisfied expressed a lack of competence in dealing with stoma-related problems.Conclusions: Living with a stoma in a rural area in northern Sweden is experienced as a learning process and acceptance of the stoma’s existence is important. This study emphasises the need for increased knowledge of stoma-related problems in rural primary healthcare in order to help patients cope with everyday life