Short- and long-term direct and indirect costs of illness after ostomy creation - a Swedish nationwide registry study.

BACKGROUND: Despite advance in care of people with an ostomy, related complications remain prevalent. The objective of this study was to examine short- and long-term healthcare resource utilization and associated costs after ostomy creation. METHODS: This observational study was based on retrospectively collected data from national and regional Swedish registries. The population consisted of people living in Sweden, who had an ostomy created. The earliest index date was 1 January 2006, and people were followed for ten years, until death, reversal of temporary ostomy, termination of purchases of ostomy products, or end of study, which was 31 December 2019. Each person with an ostomy was matched with two controls from the general population based on age, gender, and region. RESULTS: In total, 40,988 persons were included: 19,645 with colostomy, 16,408 with ileostomy, and 4,935 with urostomy. The underlying diseases for colostomy and ileostomy creations were primarily bowel cancer, 50.0% and 55.8% respectively, and additionally inflammatory bowel disease for 20.6% of ileostomies. The underlying cause for urostomy creation was mainly bladder cancer (85.0%). In the first year after ostomy creation (excl. index admission), the total mean healthcare cost was 329,200 SEK per person with colostomy, 330,800 SEK for ileostomy, and 254,100 SEK for urostomy (100 SEK was equivalent to 9.58 EUR). Although the annual mean healthcare cost decreased over time, it remained significantly elevated compared to controls, even after 10 years, with hospitalization being the main cost driver. The artificial opening was responsible for 19.3-22.8% of 30-day readmissions after ostomy creation and for 19.7-21.4% of hospitalizations during the entire study period. For the ileostomy group, dehydration was responsible for 13.0% of 30-day readmissions and 4.5% of hospitalization during the study period. CONCLUSIONS: This study reported a high disease burden for persons with an ostomy. This had a substantial impact on the healthcare cost for at least ten years after ostomy creation. Working ability seemed to be negatively impacted, indicated by increased cost of sickness absence and early retirement. This calls for improved management and support of ostomy care for the benefit of the affected persons and for the cost of society.

Using peristomal body profile assessment to improve leakage-related quality of life for individuals with an ostomy.

BACKGROUND: Improper fitting between peristomal body profile and ostomy product(s) is one of the main reasons for leakage among individuals with an ostomy. AIM: To evaluate clinical usability of the Body Assessment Tool developed by Coloplast that is available free of charge. The aim was also to study how changing to product(s) that were best suited to an individual, guided by peristomal body profile, affected the number of leakages and individuals' quality of life. METHODS: The study consisted of questionnaires administered before and after the study, which spanned 4-5 weeks. A total of 22 nurses and 68 individuals with an ostomy participated in four Nordic countries. FINDINGS: Of the 22 nurses, 21 recommended use of the tool. A shift to best fitting ostomy product(s) resulted in a significant decrease in the number of leakages (from 5.9 to 1.8 per 7 days) and a substantial improvement in quality of life. CONCLUSION: The findings support the use of the Body Assessment Tool in clinical practice and the results showed that optimally fitting ostomy product(s) reduced the number of leakages and increased individuals' quality of life.

Validation of the Surgical Preparedness Assessment in women with pelvic floor disorders.

INTRODUCTION AND HYPOTHESIS: We sought to further develop and validate the Surgical Preparedness Assessment (SPA) scale to evaluate patient preparedness for urogynecological surgery. METHODS: This was a planned ancillary analysis of a randomized controlled trial (RCT) evaluating the impact of a preoperative telehealth call on patient preparedness for urogynecological surgery. Patients completed the Preoperative Preparedness Questionnaire (PPQ), the modified Preparedness for Colorectal Cancer Surgery Questionnaire (PCSQ), the Pelvic Floor Distress Inventory (PFDI-20), the Satisfaction Decision Scale (SDS), and the Decision Regret Scale (DRS). Content validity was established through expert opinion and patient cognitive interviews. Factor analysis identified item grouping into domains. Cronbach's alpha reported internal consistency. Known group validity was assessed by comparing intervention arms. External validity was evaluated by comparing intervention arms and correlations with SDS and DRS. RESULTS: Eleven items and 3 domains met the criteria (information needs, satisfaction and pain, and catheterization). Cronbach's alpha values were acceptable for domains and ranged from 0.74 to 0.93. SPA scores did not correlate with other patient-reported outcomes. Mean SPA scores were lower among women who received a telehealth call vs those who did not (1.30 ± 0.31 vs 1.51 ± 0.44; p = 0.002). CONCLUSIONS: The content-valid SPA demonstrates high internal consistency and known group validity.

Older people's experiences of oral health and assisted daily oral care in short-term facilities.

BACKGROUND: Older people's oral health has improved, and many retain their natural teeth throughout their life. However, their daily oral care can be more difficult because of compromised general health and the reduced capacity for self-care that often comes with old age. More knowledge is needed about how older people view their oral health and oral care. The aim of this study was to describe how older people in short-term care experience their oral health and daily oral care. METHOD: A descriptive, qualitative study was performed through interviews with 14 older people (74-95 years) recruited from short-term care units in two Swedish regions. Data were analysed using inductive content analysis. RESULTS: The findings are described in one main category, three categories and nine sub-categories. The main category was Adapting to a changed oral condition while striving to retain independence. The first category, Wanting to manage daily oral care independently, contained three subcategories: Having always brushed my teeth without help, Being satisfied with my mouth and teeth, and Having to accept help if necessary. The second category, Acceptance of changes in oral condition, had three subcategories: Difficulty in chewing and swallowing, Difficulty with tooth brushing, and Not considering a dentist visit to be worth the cost. The third category, Barriers to receiving assistance from staff, had three subcategories: Staff lacking the time to help, Not wanting to be a burden, and Lack of confidence in staff's knowledge. CONCLUSIONS: The participants were generally satisfied with their oral health despite an expressed need for dental treatment. Daily oral care was something they wanted to manage themselves, and they had a strong desire to stay independent for as long as possible. Closer collaboration between dental and health care staff is necessary in order to implement clinical practice guidelines for oral health care and increase nursing staff's attention towards older peoples' oral health.

Life with a stoma-coping with daily life: Experiences from focus group interviews.

AIMS AND OBJECTIVES: To describe patients' experiences of coping with daily life practically and emotionally during the first years after stoma surgery. BACKGROUND: For people with a stoma, a new life awaits with altered bowel function and body image. This means a profound change in a person's life. DESIGN: A qualitative descriptive design using focus group interviews to gain an understanding of patients' experiences of coping with daily life. This study followed the COREQ checklist for reporting qualitative research. METHOD: Six focus groups including 21 patients with a stoma experience of 1-3 years. Mean age was 65 (23-79) and comprised 9 men and 12 women. Thirteen participants had a colostomy, 8 had an ileostomy. The interviews were analysed with a qualitative content analysis. RESULTS: Patients lived with uncertainty due to lost control over bowel function and did not feel comfortable with the new body. They had adjusted to the new life with a positive impact, by changing their attitude, enabling a social- and working life and tried to take control over the situation. Patients with a temporary stoma put life on hold. CONCLUSION: Patients with a stoma lived with uncertainty, not trusting their body like before. They strived to regain control of their lives according to their own resources and conditions and with support from healthcare professionals. Interacting with others in similar situations and exchanging experiences, in demanding areas such as body image, sexuality and social activities could support patients in coping with their new life with a stoma. RELEVANCE TO CLINICAL PRACTICE: The findings can help stoma care nurses and healthcare professionals plan themed lectures and group discussions for patients regarding coping with areas that are especially demanding. A themed evening would give patients the chance to share and exchange experiences and receive affirmation from others in the same situation.

Stoma-related complications: a report from the Stoma-Const randomized controlled trial.

AIM: The impact of construction techniques on the development of stoma complications is partly undiscovered. The aim of this paper was to report and analyse the impact of the three surgical techniques in a randomized controlled trial Stoma-Const on stoma-related complications as well as identifying risk factors and patient-reported stoma function as a planned secondary analysis. METHODS: This was a randomized, multicenter trial where all patients scheduled to receive an end colostomy were invited to participate. Patients were randomized to one of three techniques for stoma construction; cruciate fascial incision, circular incision or prophylactic mesh. Stoma complications were assessed by a surgeon and stoma care nurses within 1 year postoperatively. RESULTS: Two hundred and nine patients were randomized. Patient demographics were similar in all three groups. Data on stoma-related complications were available for analysis in 201 patients. A total of 127 patients (63%) developed some type of stoma complication within 1 year after surgery. The risk ratio (95% CI) for stoma complications was 0.93 (0.73; 1.2) between cruciate vs. circular incision groups and 1.02 (0.78; 1.34) between cruciate vs. mesh groups. There were no statistically significant differences between the groups regarding parastomal hernia rate and no risk factors could be identified. CONCLUSION: This randomized trial confirmed a high prevalence of stoma-related complications but could not identify an impact of surgical technique or identify modifiable risk factors for stoma-related complications.

Preparedness for colorectal cancer surgery and recovery through a person-centred information and communication intervention - A quasi-experimental longitudinal design.

To meet patients' information and communication needs over time in order to improve their recovery is particularly challenging for patients undergoing cancer surgery. The aim of the study was to evaluate whether an intervention with a person-centred approach to information and communication for patients diagnosed with colorectal cancer undergoing surgery can improve the patients' preparedness for surgery, discharge and recovery during six months following diagnosis and initial treatment. The intervention components involving a novel written interactive patient education material and person-centred communication was based on critical analysis of conventional information and communication for these patients. During 2014-2016, 488 consecutive patients undergoing elective surgery for colorectal cancer were enrolled in a quasi-experimental longitudinal study. In three hospitals, first a conventional care group (n = 250) was recruited, then the intervention was introduced, and finally the intervention group was recruited (n = 238). Patients' trajectories of preparedness for surgery and recovery (Preparedness for Colorectal Cancer Surgery Questionnaire-PCSQ) health related quality of life (EORTC QLQ-C30) and distress (NCCS Distress Thermometer) were evaluated based on self-reported data at five time points, from pre-surgery to 6 months. Length of hospital stay and patients' behavior in seeking health care pre- and post-surgery were extracted from patient records. Longitudinal structural equation models were used to test the hypothesized effects over time. Statistically significant positive effects were detected for two of the four PCSQ domains (patients searching for and making use of information, and making sense of the recovery) and for the role functioning domain of the EORTC QLQ-C30. Patients in the intervention group were also more likely to contact their assigned cancer "contact nurse" (a.k.a. nurse navigator) instead of contacting a nurse on duty at the ward or visiting the emergency department. In conclusion, the overall hypothesis was not confirmed. Further research is recommended on written and oral support tools to facilitate person-centred communication.

Swedish Version of the Distress Thermometer: Validity Evidence in Patients With Colorectal Cancer.

Background: The objective of this study was to validate the NCCN Distress Thermometer (DT), including the accompanying Problem List (PL), in a Swedish population of patients diagnosed with colorectal cancer (CRC). Methods: A total of 488 patients diagnosed with CRC completed the DT/PL and EORTC core quality-of-life questionnaire (QLQ-C30) before surgery. Construct validity of the PL was analyzed using a confirmatory factor analysis. Internal consistency reliability (ICR) was tested using Cronbach's alpha coefficient. Correlations between the reported PL areas and QLQ-C30 function scales were used to explore convergent validity. Discriminant validity was examined by evaluating associations between the DT and QLQ-C30 measures of overall health-related quality of life (HRQoL). Results: Findings showed that the Swedish translation of the DT/PL is consistent with the original English version. The DT has good ICR, with the total number of reported problems significantly correlating with DT scores (r=0.67; P<.001). Analysis of convergent validity indicated that the PL areas significantly correlated with QLQ-C30 function scales, with emotional problems showing the highest correlation (r=0.76; P<.001), and item-level correlation analyses showed significant correlations between symptoms. There was also good discriminant validity between the DT and the QLQ-C30 in terms of HRQoL, including overall health status (r=-0.49; P<.001) and overall quality of life (r=-0.57; P<.001). Furthermore, there was good discriminant validity between the DT and QLQ-C30 regarding poor, moderate, and excellent HRQoL. Conclusions: These findings provide validity evidence regarding the DT, including the PL. Findings also show that the DT has good potential for screening distress-related practical, family, emotional, and physical problems during the cancer trajectory in Swedish-speaking patients. Additionally, the DT seems to be an effective screening tool to detect patients with poor, moderate, and excellent HRQoL.

A Prospective, Explorative Study to Assess Adjustment 1 Year After Ostomy Surgery Among Swedish Patients.

Having ostomy surgery changes a person's life. To assess adjustment to life with an ostomy and quality of life (QOL) 1 year after ostomy surgery, a prospective, explorative study was conducted among patients of a stoma clinic at a university hospital in Sweden. All consecutive patients who had undergone nonemergent or emergency surgery involving formation of an ostomy and who received regular follow-up at the ward and at the outpatient clinic during the first year by an enterostomal therapist (ET) were prospectively included in the study; their demographic information (including age, gender, diagnosis/reason for an ostomy, nonemergent or emergency surgery, ostomy type, preoperative counselling/siting [Yes/No], self-sufficiency in stoma care, professional activity, and whether they lived with a spouse/partner) was recorded upon admission to the study. Participants independently completed the Ostomy Adjustment Scale (OAS), a 36-item instrument, with each response scored from worst to best adjustment (1 to 6) for a total score ranging from 36-216. The tool addresses 5 factors: normal functioning, functional limitations, negative affect, positive role function, and positive affect. In addition, QOL was assessed using a visual analogue scale (0 to 100 mm) along with 2 open-ended QOL questions. Quantitative and qualitative data were included on the same questionnaire and were entered into an Excel file by 2 of the researchers. The quantitative data were transferred to statistical software for analysis; the qualitative data were analyzed according to Graneheim and Lundman. Descriptive statistics were used for quantitative data and based on nonparametric analysis, and qualitative data were analyzed using content analysis. Of the 150 patients eligible for inclusion (82 women, 68 men, median age 70 [range 21-90] years), 110 (73%) underwent nonemergent surgery, 106 (71%) had a colostomy, and 44 (29%) had an ileostomy. Most ostomies were created due to cancer (98, 65%) and inflammatory bowel disease (28, 19%), and 90% of participants were self-sufficient in ostomy care. The overall median score on the OAS was 162 with no significant differences between genders and diagnoses. The OAS scores for patients who did versus did not have preoperative counselling by an ET were 163 and 150, respectively (P = .313). Mean OAS scores were 136 for patients with cancer and an ileostomy and 163 for patients with cancer and a colostomy. Patients with cancer and an ileostomy had a significantly worse adjustment (mean 3.6 ± 1.32) than patients with cancer and a colostomy (mean 4.4 ± 1.21) in the factor Normal function (P = .015). Lowest adjustment scores were in the areas of sexual activities and attractiveness and participating in sports and physical activities; the highest scores concerned contact with an ET, feeling well informed, and knowing the correct methods of handling the ostomy. The median score for QOL for all patients was 76 (interquartile range 59-86). Three (3) categories emerged from the qualitative content analysis as obstacles to QOL: ostomy-related concerns and impact on life, limitations in physical and social activities, and negative impact on physical and mental health. The ET was found to have an important role in education and counselling to promote adjustment to life with an ostomy from preoperative to follow-up care. Future explorative studies are needed to determine how patients want questions about sex and sensitive issues to be designed and how the ET can best discuss sexuality and intimacy after ostomy surgery.

Communicative and pedagogical strategies in nurses' and surgeons' discharge consultations with patients undergoing surgery for colorectal cancer.

AIM: To describe the structure, content, and the communicative and pedagogic strategies in discharge consultations between patients and professionals after colorectal cancer surgery. BACKGROUND: Both nurses and surgeons play an important role in preparing patients for discharge from hospital following surgery for colorectal cancer (CRC). DESIGN: An explorative quantitative and qualitative research based on analysis of transcriptions of 13 audio-taped discharge consultations between patients and nurses and patients and surgeons conducted between January - March 2012. METHODS: In the quantitative analysis, the structure of each consultation was described in phases, subtopics, and main topics. The proportion of the main topics in relation to the whole conversation was counted in percentages. The text from the consultations was then analysed qualitatively with the support from Ricoeur's theory of interpretation. RESULTS: The language constituted the essence in the consultations regardless of other communicative and pedagogical strategies. The pedagogic strategies used were explanation model, information transfer, task orientation, and dialogue. Topics occurring in the consultations were Operation, Symptoms, Medication, Thromboprophylaxis, Recovery after surgery, Bowel function, Spreading, and Follow-up. The surgeons and nurses used similar topics, but the surgeons used more communicative and pedagogic strategies. CONCLUSION: Language was fundamental for communication and independent of the communicative and pedagogical strategies. Using preparedness communication more consistent in discharge consultation can help patients to better understand the recovery process after CRC surgery and regain control over their life. It is important that the consultations build on the patient as an active and learning person.

Exploration of dynamics in a complex person-centred intervention process based on health professionals' perspectives.

BACKGROUND: The assessment and evaluation of practical and sustainable development of health care has become a major focus of investigation in health services research. A key challenge for researchers as well as decision-makers in health care is to understand mechanisms influencing how complex interventions work and become embedded in practice, which is significant for both evaluation and later implementation. In this study, we explored nurses' and surgeons' perspectives on performing and participating in a complex multi-centre person-centred intervention process that aimed to support patients diagnosed with colorectal cancer to feel prepared for surgery, discharge and recovery. METHOD: Data consisted of retrospective interviews with 20 professionals after the intervention, supplemented with prospective conversational data and field notes from workshops and follow-up meetings (n = 51). The data were analysed to construct patterns in line with interpretive description. RESULTS: Although the participants highly valued components of the intervention, the results reveal influencing mechanisms underlying the functioning of the intervention, including multiple objectives, unclear mandates and competing professional logics. The results also reveal variations in processing the intervention focused on differences in using and talking about intervention components. CONCLUSIONS: The study indicates there are significant areas of ambiguity in understanding how theory-based complex clinical interventions work and in how interventions are socially constructed and co-created by professionals' experiences, assumptions about own professional practice, contextual conditions and the researchers' intentions. This process evaluation reveals insights into reasons for success or failure and contextual aspects associated with variations in outcomes. Thus, there is a need for further interpretive inquiry, and not only descriptive studies, of the multifaceted characters of complex clinical interventions and how the intervention components are actually shaped in constantly shifting contexts.

Prepared for surgery - Communication in nurses' preoperative consultations with patients undergoing surgery for colorectal cancer after a person-centred intervention.

AIMS AND OBJECTIVES: To describe preoperative communication after a person-centred intervention in nurses' consultations with patients undergoing surgery for colorectal cancer. BACKGROUND: Patients all over the world scheduled for surgery are referred to preoperative consultations with healthcare professionals. The goal is to assess the risk of perioperative complications, improving quality of care and enabling patients to be prepared for surgery and recovery. A person-centred intervention was developed, which consisted of an interactive written patient education material and person-centred communication. DESIGN: An explorative quantitative and qualitative study based on 18 audio-taped transcriptions. METHODS: Eighteen patients preoperative nursing consultations at three Swedish hospitals were analysed quantitatively regarding structure: words, time, phases, questions, discursive space, and qualitatively: topics and how the person-centred communication appeared in the consultations. RESULTS: The median time for consultations was 27 min (range 13-64 min). The nurses used two-thirds of the discursive space in the consultations with the patients. The patient education material was used as a support to structure the consultation and discuss sensitive and difficult issues. Seven topics were discussed during the consultation. Two different approaches to communication were identified: Talking with the patient versus Talking to the patient. Talking with the patient (seen as person-centred communication) was defined as: listening to the narrative and confirming each other, raising difficult topics, seeing each other as persons, building on strengths and resources, preparing for surgery and asking open questions. CONCLUSION: Ways of communicating influence how the preoperative consultation develops. Talking with the patient could be seen as person-centred communication in the preoperative care, and when using this approach, the intervention purpose of person-centred communication was met. RELEVANCE TO CLINICAL PRACTICE: Education in person-centred communication is important for nurses to improve their skills in performing preoperative consultations.

Older people's perceptions of the quality of oral care in short-term care units: A cross-sectional study.

BACKGROUND: There is a lack of knowledge about oral care among older people living in short-term care (STC) units and how the quality of oral care provided by nursing staff is perceived by the older people. AIM: To (i) describe person-related conditions among older people in STC, (ii) describe and compare perceptions of the quality of oral care (including perceptions of care received and the subjective importance of such care), within and between older people who have the ability to perform oral self-care and those who are dependent on help with oral care and (iii) examine the relationship between person-related conditions and the quality of oral care. METHODS: A cross-sectional study was conducted with 391 older people in STC units in Sweden based on self-reported questionnaire and clinical assessments. RESULTS: The older people were assessed as having normal oral health (2%), moderate oral health problems (78%) or severe oral health problems (20%). When comparing older people's perceptions of quality of oral care in terms of perceived reality and subjective importance, significant differences appeared within and between groups. Psychological well-being had a significant relationship with perception of the quality of oral care (both perceived reality and subjective importance), and gender and oral health status had a significant relationship with subjective importance. CONCLUSIONS: Older people's perceptions of areas for improvement regarding quality of oral care is a new and important knowledge for nursing staff in STC units. Older people want personalised information regarding oral health and oral care. Registered Nurses who take the responsibility in nursing care for older people's oral health may avoid unnecessary suffering by older people caused by oral health problems. IMPLICATIONS FOR PRACTICE: Older people's perspective is an important component for quality work and might lead to improvements in the quality of oral care in STC.

Living with a resected rectum after rectal cancer surgery-Struggling not to let bowel function control life.

AIMS AND OBJECTIVE: To illuminate what it means to live with a resected rectum due to rectal cancer, after reversal of a temporary loop ileostomy. BACKGROUND: Today, treatment for rectal cancer is performed with increasing emphasis on sphincter-saving surgery, meaning that an anterior resection often includes construction of a temporary loop ileostomy that is later reversed. The majority of patients will subsequently have disordered bowel function, with symptoms ranging from urgency to faecal incontinence. The symptoms are thought to decrease over time, reaching a plateau 1 year after surgery. There is a lack of knowledge about patients' lived experience after 1 year. DESIGN: An explorative qualitative study. METHODS: In-depth interviews were conducted with ten participants, 12-20 months after surgical closure of a temporary loop ileostomy following rectal cancer surgery. The transcribed interviews were analysed using a phenomenological hermeneutical method. RESULTS: The thematic structural analysis resulted in three themes: living with uncertainty, struggling to live with altered bowel function and a preoccupation with bowel function. In the comprehensive understanding, a deeper overall understanding emerged, illuminating that the meaning of living with a resected rectum could be interpreted as being resilient. CONCLUSIONS: The participants' lived experiences were understood as being resilient in that they struggled with the uncertainty and adversity of living with an unpredictable bowel, which was a constantly preoccupation and affected every aspect of life. The participants had not yet adapted to their situation but were struggling in solitude to get there, with little or no help from healthcare professionals. RELEVANCE TO CLINICAL PRACTICE: The insight from this study highlights the importance of patients being systematically examined and followed up in regard to functional results and impact of symptoms on everyday life. Treatment, information, advice and counselling should be given to promote adaption to the new situation.

Study protocol for the SOFIA project: Swallowing function, Oral health, and Food Intake in old Age: a descriptive study with a cluster randomized trial.

BACKGROUND: Extensive studies have shown that older people are negatively impacted by impaired eating and nutrition. The abilities to eat, enjoy food, and participate in social activities associated with meals are important aspects of health-related quality of life (HRQoL) and recovery after illness. This project aims to (i) describe and analyze relationships between oral health and oral HRQoL, swallowing ability, eating ability, and nutritional risk among older individuals admitted to short-term care; (ii) compare the perceptions that older individuals and staff report on care quality related to oral hygiene and eating; and (iii) study the feasibility and effects of a training program for people with impaired swallowing (i.e., dysphagia). METHODS/DESIGN: This project consists of two parts, which will be performed in five Swedish counties. It will include approximately 400 older individuals and 200 healthcare professionals. Part 1 is a cross-sectional, descriptive study of older people admitted to short-term care. Subjects will be assessed by trained professionals regarding oral health status, oral HRQoL, eating and nutritional risk, and swallowing ability. Swallowing ability will be measured with a teaspoon test and a swallowing capacity test (SCT). Furthermore, subjects and staff will complete a questionnaire regarding their perceptions of care quality. Part 2 is a cluster randomized intervention trial with controls. Older participants with dysphagia (i.e., SCT <10 ml/s, measured in part 1) will be recruited consecutively to either the intervention or control group, depending on where they were admitted for short-term care. At baseline, all subjects will be assessed for oral health status, oral HRQoL, eating and nutritional risk, swallowing ability, and swallowing-related QoL. Then, the intervention group will receive 5 weeks of training with an oral screen for neuromuscular training focused on orofacial and pharyngeal muscles. After completing the intervention, and at six months post-intervention, all assessments will be repeated in both study groups. DISCUSSION: The results will make important contributions to rehabilitation knowledge, including approaches for improving swallowing function, oral health, and food intake and for improving the quality of oral care for older people. TRIAL REGISTRATION: This trial was retrospectively registered at ClinicalTrials.gov, on July 4, 2016, identifier: NCT02825927 .

A Descriptive, Qualitative Study to Assess Patient Experiences Following Stoma Reversal After Rectal Cancer Surgery.

Standard surgical treatment for patients operated for rectal cancer is abdominoperineal excision of the tumor result- ing in a permanent colostomy or an anterior resection, often with construction of a temporary loop ileostomy. Both options impact bowel function. Living with a permanent colostomy has been studied in depth, but knowledge is limited about patients' experiences living with a resected rectum after stoma reversal and how it affects daily life. A qualitative study was conducted to describe the rst 4 to 6 weeks after reversal of a temporary loop ileostomy due to rectal cancer. Patients from 1 university hospital and 1 county hospital in Sweden were recruited by telephone and were eligible to participate in the study if they: 1) had been operated for rectal cancer with an anterior resection and a temporary loop ileostomy that had been reversed; 2) were >18 years of age, fully oriented, and understood the Swedish language; and 3) had a postoperative course without complications. Interviews were conducted be- tween December 2013 and June 2015 either at the hospital or at the participants' homes. Participants were asked to narrate their experiences since stoma reversal. Probing open-ended questions were used to stimulate narration and clarify and enhance understanding. The interviews were recorded, transcribed verbatim, and analyzed us- ing thematic content analysis. The 16 participants included 9 women and 7 men (median age 67 years). Three (3) main themes emerged: Life being controlled by the altered bowel function, with the subthemes loss of control over bowel function, uncertainty regarding bowel function, and being limited in social life; Striving to regain control over the bowel, with the subthemes using ability and knowledge, social support, and being grateful and hopeful; and A desire to be normal, with subthemes getting rid of the stoma and restoration of body image. Patients experienced severe bowel function problems, including increased bowel movement frequency and inability to anticipate or trust bowel function after stoma reversal. Outwardly, patients experienced a signi cant improvement in body image but continued to struggle with suboptimal bowel function. Patients needed reassurance that their bowel symptoms were normal. Participants strove to regain control over bowel function using various strategies, including what they had learned about diet and medication before stoma reversal and by trying to defy the restrictions of their new normal. They felt they were ghting to regain bowel control without help from health care professionals. In order to cope with altered bowel function, they needed the support of family and friends. The results suggest that, following stoma reversal, patients need information about available treatments to address their symptoms and require regular follow- up visits to evaluate and address functional results.

Longitudinal person-centered measurement: A psychometric evaluation of the Preparedness for Colorectal Cancer Surgery Questionnaire (PCSQ).

OBJECTIVE: The Preparedness for Colorectal Cancer Surgery Questionnaire (PCSQ) was previously developed in Swedish to assess patients' knowledge seeking and sense making capabilities. Aiming to measure preparedness at different phases during the pre-surgery and recovery period, the objectives were to (a) evaluate psychometric properties of the longitudinal PCSQ, (b) establish measurement invariance over time, and (c) describe change in preparedness. METHODS: Elective colorectal cancer surgery patients completed a questionnaire at five time points from pre-surgery until 6 months post-surgery (n=250). The longitudinal PCSQ consists of 23 items measuring four domains: Searching for and making use of information, Understanding and involvement in care, Making sense of recovery, Support and access to care. Psychometric analyses, including confirmatory factor analysis, were applied to evaluate internal consistency reliability and ascertain invariance over time of the measurement structure and parameters. RESULTS: The psychometric analyses revealed good fit of the measurement models, high internal consistency reliability (≥.94), and support for configural, metric and scalar measurement invariance of the four PCSQ domains. Patients reported lower levels of preparedness after surgery than pre-surgery. CONCLUSION: The adapted version of the PCSQ can be used for longitudinal analyses. PRACTICE IMPLICATIONS: The measurement of preparedness is important for evaluating person-centred outcomes before and during recovery from colorectal cancer surgery.

Healthcare-professional patients' conceptions of being ill and hospitalised - a phenomenographic study.

AIMS AND OBJECTIVES: To describe the variation of conceptions of being ill and hospitalised, from the perspective of healthcare-professional patients. BACKGROUND: Previous literature focuses on either physicians' or nurses' experiences of being a patient, without aiming at determining a variation of ways of understanding that phenomena. Nor have we been able to identify any study reporting other healthcare professionals' experiences. DESIGN: This study has an inductive descriptive design. METHODS: Qualitative interviews with healthcare professionals (n = 16), who had been hospitalised for at least two days. Phenomenographic data analysis was conducted. RESULTS: The feelings of security were based on knowledge, insight and trust, and acceptance of the healthcare system. Being exposed and totally dependent due to illness provoked feelings of vulnerability and insecurity. The patients used their knowledge to achieve participation in the care. The more severe they perceived their illness to be, the less they wanted to participate and the more they expressed a need for being allowed to surrender control. The patients' ideal picture of care was sometimes disrupted, and based on their experience, they criticised care and made suggestions that could contribute to general care improvements. CONCLUSIONS: Healthcare-professional patients have various conceptions of being ill and hospitalised. Based on the general nature of the many needs expressed, we believe that the insights provided in this study can be transferred so as to also be valid for lay patients. Possibly, an overhaul of routines for discharge planning and follow-up, and adopting a person-centred approach to care, can resolve some of the identified shortcomings. RELEVANCE TO CLINICAL PRACTICE: The results can be used for the purpose of developing knowledge for healthcare professions and for educational purposes.

Topics and structure in preoperative nursing consultations with patients undergoing colorectal cancer surgery.

BACKGROUND: The preoperative education, which occurs in preoperative patient consultations, is an important part of the surgical nurse's profession. These consultations may be the building blocks of a partnership that facilitates communication between patient and nurse. AIM: The aim of the study was to describe topics and structure and documentation in preoperative nursing consultations with patients undergoing surgery for colorectal cancer. METHOD: The study was based on analysis of consultations between seven patients and nurses at a Swedish university hospital. The preplanned preoperative consultations were audio-recorded and transcribed verbatim. The structure of the consultations was described in terms of phases and the text was analysed according to a manifest content analysis RESULTS: The consultations were structured on an agenda that was used variously and communicating different topics in an equally varied manner. Seven main topics were found: Health status, Preparation before surgery, Discovery, Tumour, Operation, Symptoms and Recovery after surgery. The topic structure disclosed a high number of subtopics. The main topics 'Discovery', 'Tumour' and 'Symptoms' were only raised by patients and occupied only 11% of the discursive space. Documentation was sparse and included mainly task-oriented procedures rather than patients' worries and concerns. CONCLUSION: There was no clear structure regarding preoperative consultation purpose and content. Using closed questions instead of open is a hindrance of developing a dialogue and thus patient participation. Preoperative consultation practice needs to be strengthened to include explicit communication of the consultations' purpose and agenda, with nurses actively discussing and responding to patients' concerns and sensitive issues. The results of the study facilitate the development of methods and structure to support person-centred communication where the patient is given space to get help with the difficult issues he/she may have when undergoing surgery.

The Prevalence of Ostomy-related Complications 1 Year After Ostomy Surgery: A Prospective, Descriptive, Clinical Study.

Despite advancements in the creation and care of stomas, ostomy and peristomal skin complications are common immediately following surgery as well as in the months and years thereafter. A prospective study to determine the prevalence of ostomy and peristomal skin complications and the influence of ostomy configuration on such complications was conducted 1 year after ostomy surgery among all patients at a university hospital in Sweden. All participants received regular (10 to 14 days post discharge, 6 weeks, 3 months, 6 months, and 1 year post surgery) ostomy follow-up care by a wound ostomy continence (WOC) nurse. All consecutive elective and emergency patients who had undergone surgery to create a colostomy (end colostomy), end ileostomy, or loop ileostomy were eligible to participate. Patients who were reoperated during their first year post-surgery, patients with a urostomy, and patients with double ostomies were excluded from the study. Patient data collected included age, gender, diagnosis, elective or emergency surgery, open or laparoscopic surgical procedure, presence of a colorectal surgeon specialist at surgery, type of ostomy (colostomy, end ileostomy, loop ileostomy), preoperative ostomy siting, counseling, body mass index, American Society of Anesthesiologists classification, and radiation and/or chemotherapy status. Ostomies were evaluated by 4 WOC nurses as to stoma configuration, convexity use, patient self-sufficiency in stoma care, and complications. All 207 patients (53% women) who were eligible agreed to participate in the study. Patient median age was 70 years (range 19-94); 74% underwent elective surgery. Main diagnoses were colorectal cancer (62%) and inflammatory bowel disease (19%). Ostomy types were: colostomy (71%), end ileostomy (26%), and loop ileostomy (3%). One or more complications occurred in 35% of the patients (27% ostomy complications, 11% peristomal skin complications). A colostomy hernia was the most common surgical complication (20%), and significantly more women (69%) and emergency surgeries were noted among patients with a colostomy and an ostomy height of ≤5 mm. The use of convexity was significantly more common among patients with a stoma height of ≤5 mm than patients with stomas >5 mm (P = 0.016) and among patients having emergency operations than among patients having elective surgery (P = 0.045). Of the emergency surgeries, 37% had not been ostomy-sited (P <0.0001). With regular WOC nurse follow-up, the prevalence of peristomal skin complications in this population was low, and adequate ostomy height might have prevented the frequent use of convexity. Explorative studies are needed that consider differences in body configuration when determining optimal stoma height, especially for patients who require emergency surgery.