Health needs of patients with permanent colostomy in North China: A longitudinal qualitative study based on the “Timing It Right” framework

To construct a conceptual framework on the process of family resilience during the first year following childhood leukaemia diagnosis. A longitudinal qualitative interview study. A longitudinal qualitative study following a grounded theory methodology was employed. Semi-structured interviews were conducted with parents of children with leukaemia in a general hospital. The participants were recruited through purposive and theoretical sampling and longitudinal engagement was achieved by conducting interviews at 1, 3, 6, and 12 months after the leukaemia diagnosis. The core category and categories were saturated following the enrolment of parents of children with leukaemia. Data collection and analyses were performed simultaneously. Sixteen parents of children with leukaemia participated. The core category of 'families living with childhood leukaemia' refers to the process of family resilience during the first year following childhood leukaemia diagnosis, which includes three phases: (1) destruction and resiliency period; (2) adjustment and consolidation period; and (3) growth and planning period. This study explored the dynamic, complex and continuous processes of resilience among families coping with childhood leukaemia during the first year following diagnosis. Further research should design tailored family interventions that characterise the different phases of family resilience, aiming to support family well-being, integrity and functioning. Both families and healthcare professionals must create an enabling environment that supports families coping with difficulties. Understanding the different phases of family resilience allows healthcare professionals to provide holistic care that meets the demands of families with childhood leukaemia. Unique knowledge emerged about the family's resiliency process when facing childhood leukaemia, suggesting a family-led revolution in understanding and managing childhood leukaemia. Therefore, the development of phased, resilience-based family interventions is imperative. This study was reported using the COREQ checklist. Patients contributed via study participation.

A colostomy can negatively impact patients' quality of life. Recent research findings suggest that self-efficacy and psychosocial adjustment are positively associated with quality of life, but there are few research reports about the self-efficacy and psychosocial adjustment of patients with a permanent colostomy. The objective of the study was to evaluate the effect of a 3-week Expert Patient Program (EPP) on colostomy knowledge, stoma care self-efficacy, self-management, and psychosocial adjustment in Chinese patients who had a permanent colostomy. Eleven patients with permanent colostomy volunteered to be trained to be expert patients. Eighty-one patients with permanent colostomy were recruited and participated in the 3-week EPP courses. Questionnaires with items about knowledge on colostomy, stoma care self efficacy, self-management, and psychosocial adjustment were administered before and at 4 weeks following the EPP courses. Each EPP participant also completed a verbal interview at the end of the program. The EPP participants demonstrated statistically significant improvement (P < .01) in knowledge, self-efficacy, self-management, and psychosocial adjustment to colostomy (mean [SD]: 51.89 [11.45] vs 89.22 [19.90], 71.56 [5.93] vs 85.61 [14.32], 125.44 [19.27] vs 140.78 [15.34], 47.59 [9.64] vs 53.37 [10.68], respectively). Most participants gave positive ratings to the EPP. This study showed that the EPP was applied effectively in patients with permanent colostomy. This study highlights the importance of psychosocial support for patients with permanent colostomy. It offers a model of self-help practice in colostomy patients, supported by community that can benefit more patients with permanent colostomy.

This longitudinal observational study aimed to investigate symptom clusters and quality of life (QOL) in patients with cervical cancer (CC) at multiple time points during the perioperative period. It also sought to analyze the correlation between symptom clusters and QOL, thereby providing evidence for dynamic symptom cluster management and strategies to improve patients' QOL. From August to December 2025, we conducted a longitudinal observational study among 183 cervical cancer patients during the perioperative period. Participants were recruited from a gynecology center within a tertiary hospital in Northwestern China. Patients completed a demographic questionnaire, the Chinese version of the MD Anderson Symptom Inventory-perioperative symptom in patients with gynecologic cancer (MDASI-PeriOp-GYN), and the Functional Assessment of Cancer Therapy-General (FACT-G). Assessments were performed on the first day of admission (T1, preoperative baseline), 1-3 days after surgery (T2), and 7-10 days after surgery (T3). Symptom clusters were extracted using exploratory factor analysis (EFA). Longitudinal trends in symptom clusters were examined using latent class mixed models (LCMM). Trends in QOL were assessed with generalized estimating equations (GEE). Correlations between symptom clusters and QOL were analyzed using Spearman correlation analysis. Five symptom clusters were identified in cervical cancer patients during the perioperative period: pain-fatigue, psychological, hot flashes-neurological, digestive tract, and energy-deficit. The energy-deficit cluster was detected only at T2, whereas the digestive tract cluster was present at T2 and T3. LCMM analyses revealed that the pain-fatigue, psychological, and hot flashes-neurological clusters rose from T1 to T2 and subsequently declined after T2. Overall QOL followed a V-shaped trajectory: both domain and total scores declined significantly from T1 to T2, partially recovered at T3, but remained below preoperative levels. Moreover, the severity scores of all symptom clusters were negatively correlated with the total QOL score (p < 0.05). Patients undergoing cervical cancer surgery often experience various symptom clusters. High symptom severity is typically associated with lower QOL. Therefore, clinical staff should prioritize the dynamic management of symptom clusters in perioperative cervical cancer patients. This strategy can help reduce symptom burden and enhance patients' QOL.

Objective To investigate the social support and the quality of life of colorectal patients with permanent colostomy,and to examine the stability and change of the social support and the quality of life during the post-operative recovery period.Methods A convenience sample of 30 colorectal patients with permanent colostomy were recruited initially.19 completed the follow-up interview 3 months later.Social Support Rating Scale (SSRS) and the Quality of Life Instrument for Cancer Patients(QLICP) were used to measure the social support and the quality of life.Results The dimensions of SSRS were on decline during 3 months after surgery.The scores of the physical and psychological domains of QLICP increased and the scores of the social,general and specific domains decreased but not significantly during the 3 months after surgery.The scores of specific domain were negatively correlated with the scores of utilization degree of social support,as well as the correlation of scores of specific domain and the total scores of social support.Conclusions The enterostomal therapist should pay attention to the change regulation and relationship between social support and life quality of patients with permanent colostomy,and provide them with physical,psychological,psychiatric and social support according to their demands in order to promote their recovery. Key words: Permanent colostomy; Social support; Quality of life; Colorectal cancer

This study aimed to analyse the impact of enterostomal therapist-led visual health education combined with peer education on the postoperative self-nursing ability, quality of life and peristomial complications in patients with a permanent colostomy. Patients with a permanent colostomy admitted to Second Hospital of Hebei Medical University between March 2021 and March 2023 were selected and divided into the study group (60 patients) and the control group (60 patients). Enterostomal therapist-led visual health education combined with peer education was adopted in the study group, and regular education was adopted in the control group. The clinical effects between the two groups were compared. Repeated measurement analysis of variance showed that the two educational methods had different effects on the quality of life (Ftreatment = 342.734, p < 0.001), self-nursing ability (Ftreatment = 256.321, p < 0.001), adaptability (Ftreatment = 321.734, p < 0.001) of patients with a permanent colostomy. After the 3-month intervention, the differences in all aspects of the quality of life, self-nursing ability and adaptability between the two groups were statistically significant, and the score of the study group was higher than that of the control group (p < 0.05). Compared with the control group, the study group had a lower incidence of the five complications (p < 0.05) and higher nursing satisfaction (Z = -2.968, p < 0.05). Enterostomal therapist-led visual health education combined with peer education can improve the quality of life of patients with a permanent colostomy, improve their positive mood, reduce their negative mood, improve their adaptability to the stoma, reduce complications and improve their daily living conditions. In the future, the clinical application of visual health education and peer education in patients with permanent colostomy should be increased.

Aim: This study aimed to evaluate the outcomes of educational guidelines on quality of life among patients with permanent colostomy. Subjects and Methods: A quasi-experimental design was utilized in this study, which was conducted in the surgery departments at El- Menofia and Alexandria university Hospitals. A purposive sample of (60) adult patients from both genders with permanent colostomy were taken from the above mentioned settings. The study tool was: Interviewing was used in order to fill The Translated Arabic format of quality of life index for patients with cancer, Sociodemographic data sheet. Results: Improvement of levels of quality of life among patients who received educational guidelines. Conclusion : On the light of the current study results, it can be concluded that, educational guidelines had a positive effect on quality of life among Patients with Permanent Colostomy . Recommendations: Further studies should be carried out on a large number of patients with colostomy for evidence of the results and generalization . Keywards: Permanent colostomy, educational guidelines and quality of life .

To observe the quality of life (QOL) in rectal cancer patients with permanent colostomy in different periods after operation. A 1-,3-,6-month prospective study of QOL in 51 rectal cancer patients with permanent colostomy and 50 without permanent colostomy was assessed using European Organization for Research and Treatment of Cancer (EORTC) QOL-30 and CR38 questionnaires. The variation of QOL in different periods was "v" type. In the 1st postoperative month, these patients had the lowest quality of life scores, accompanied significantly varied functions and severe symptoms. Almost of all indexes of these patients had improved consistently in the postoperative period. The scores of global QOL even better than pre-operative level at 6th months post-operation, but the social function, body image, chemotherapy side effects and financial difficulties had not restored to the baseline level. Patients without permanent colostomy had a better score in most of categories of QOL-30 and CR38. The 1st postoperative month was crucial for patients' recovery, in which we should pay great attention to these problems which relate to the recovery of rectal cancer patients with permanent colostomy.

Objective To summarize the experience from patients with permanent colostomy who underwent colostomy therapists continuous nursing intervention. Methods Colostomy therapist who had received the qualification certificate of the World Colostomy Therapists Association will provide full-time service. The continuous nursing interventions included preoperative education, colostomy location, volunteers participation, preoperative psychological guidance, postoperative incision observation and evaluation, psychological nursing, guidance postoperative patients to master colostomy nursing knowledge, guidance and assistance to choose pockets, propaganda and education, hospital discharge guidance, prevention and treatment of colostomy complications, organization regular colostomy sodality, telephone follow-up and consultation the nursing intervention measures. Results Colostomy therapists continuous nursing intervention effectively prevented and treated colostomy complications, improved the colostomy patient’s quality of life. Conclusions Colostomy therapist continuous nursing intervention provided specialization and continuity of care services for patients after colostomy, is worthy of popularization and application. Key words: Colostomy; Quality of life; Nursing services

Patients with permanent colostomy need continuous nursing management measures. Therefore, this study aimed to investigate the impact of discharge planning combined with "Internet home ostomy care platform'' on post-discharge complications, self-management abilities, quality of life, and satisfaction of patients with permanent colostomy after rectal cancer surgery. This retrospective analysis included 72 rectal cancer patients who underwent permanent colostomy in Zhejiang Provincial People's Hospital between January 2021 and December 2021. Patients receiving routine nursing management were included in the control group (n = 36), and those receiving discharge planning combined with "Internet home ostomy care platform'' were included in the study group (n = 36). We collected baseline data, complication rate, self-management behavior questionnaire for Chinese enterostomy patients (SBQ-CEP), and Chinese version of the City of Hope Quality of Life-Ostomy Questionnaire (COH-QOL-OQ) and Medical Experience Scale for Outpatient Care of Enterostomy (MES-OCE) score. The complication rate, self-management ability, quality of life, and satisfaction of the two groups were statistically compared and analyzed. The study group demonstrated significantly higher medical compliance behavior, dietary behavior, symptom management behavior, psychosocial behavior, information management behavior scores, and SBQ-CEP total scores compared to the control group six months after discharge (p < 0.05). However, the study group showed a significantly lower incidence of complications than the control group at 1 week, 2 weeks, 1 month, 3 months, and 6 months after discharge (p < 0.05). Furthermore, the study group demonstrated significantly lower psychological well-being, physical well-being, spiritual well-being, social well-being scores, and COH-QOL-OQ total scores compared to the control group 6 months after discharge (p < 0.05). Additionally, the study group indicated significantly higher environment and process, service attitude, health guidance, diagnosis and treatment effect, overall evaluation of treatment experience scores, and MES-OCE total scores compared to the control group 6 months after discharge (p < 0.05). Discharge planning combined with "Internet home ostomy care platform'' can effectively reduce the risk of complications in patients with permanent colostomy after rectal cancer surgery. It improves patients' self-management abilities, quality of life, and satisfaction. This finding provides an ongoing guarantee for the quality of rehabilitation at home for patients with permanent colostomy.

442P - Relationship between QOL and support elderly patients with permanent colostomies

Many traumatic injuries to the perineal area cause to live with colostomies throughout the lifetime of a person. Living with a permanent colostomy brings severe changes to the patient’s life in terms of physical, social, spiritual, sexual, and psychosocial health. The aim of the present study was to explain the importance of understanding the psychosocial aspects of a young adult during a hospital stay with a permanent colostomy. This is a qualitative case study based on interpretive phenomenology. Interviews and direct observations were conducted as the data collection methods to obtain in-depth information regarding the case study topic and gathered data through patient direct observation. The study was about a 28-year-old male engineer who met with a road traffic accident that severely damaged his perineal area and finally undergone a permanent colostomy due to loss of anal sphincter muscles and anal opening. The data analysis was performed by the method of content analysis. This incident was a huge psychological disaster for him to accept the reality and adjust his permanent colostomy. Young people may have profoundly negative impacts on permanent colostomies. Adaptation is a long-term process that requires effective communication, acceptance and understanding. Nurses should be vigilant to do careful assessment on psychosocial needs of patients with permanent colostomies in order to improve the quality of their lives. Therefore, it is suggested that the nurses should acquire specialized knowledge, skills, and training on stoma care in order to provide personalized holistic care to the patients who have undergone permanent colostomies. Keywords: Permanent colostomy, perineal injury, quality of life, traumatic event, body image

The purpose of the study: to identify risk factors for decreased quality of life in patients with permanent colostomy. The results of a survey of 114 patients with permanent stoma after radical surgical treatment of stage I–III rectal cancer were analyzed. The quality of life was assessed with EORTC QLQ-C30 questionnaire.Severe impact on the global health status (less than 50 points) was observed in 21 (18.4 %) respondents. The significant risk factors of impaired quality of life include the absence of preoperative stoma site marking (OR = 6.5, 95 %CI = 2.0–20.4; p = 0.002) and the lack of specialized stoma care service in the region of residence (OR = 4.6, 95 %CI = 1.6–13.1; p = 0.005). The emergency nature of the primary operation also had a significant negative impact on subsequent quality of life (OR = 6.1, 95 %CI = 1.8–20.1; p = 0.004). The employment had a positive effect on the quality of life of patients (OR = 0.2, 95 %CI = 0.07–0.9; p = 0.024). Conclusion. The quality of life of patients with a permanent colostomy after radical surgery for rectal cancer depends on several factors. The absence of preoperative stoma site marking, inaccessibility of the rehabilitation service for colostomy patients in the region, and surgery emergency negatively affect the quality of life of this category of patients.

The factors that influence a patient's experience of a colostomy are not known. The aim of this study was to characterise stoma function, stoma-related bother and acceptance among patients operated for rectal cancer and to investigate if there were any preoperative personal factors with predictive impact on long-term stoma-related bother. The QoLiRECT (Quality of Life in RECTal cancer) study is a prospective multicentre study of patients with rectal cancer. This was a subgroup analysis of patients with a permanent colostomy with a 2-year follow-up. Penalised regression models with shrinkage estimation were used to predict the 1-and 2-year bother using baseline data. The predictive value and the importance of the included variables were evaluated using bootstrap resampling techniques. A total of 379 patients were included. Overall stoma acceptance was high and a majority of patients were not bothered by their stoma; 77% and 83% at 1 and 2years, respectively. The subgroup of patients with stoma-related bother had a high prevalence of difficulties, especially fear of leakage, and a low stoma acceptance in daily life. Both clinical and personal factors were associated with stoma-related bother. The most important factors were quality of life and physical health, but the prediction accuracy was low. Stoma-related bother was associated with overall stoma dysfunction. As stoma-related bother is a multifactorial problem, it was not possible to predict which patients will experience stoma-related bother. It is therefore of importance to prevent stoma-related symptoms and optimise stoma function to reduce long-term bother and increase stoma acceptance.

"This study aims to compare the quality of life in patients with rectal cancer between sphincter preservation and permanent colostomy. The present study is a cross-sectional study that was performed on 120 patients (60 cases in the sphincter maintenance group and 60 cases in the permanent colostomy group) who underwent surgery from February 2017 to November 2016. Quality of life assessment was provided with QLQ-C30 and QLQ-CR29 questionnaires. Finally, the collected data were analyzed using SPSS23 software. According to the results of the QLQ-C30 questionnaire, there was no statistically significant difference in patients' quality of life in terms of performance in the study groups (P˃0.05). Symptoms such as nausea, pain, shortness of breath, sleep disturbance, loss of appetite, constipation and economic problems in the study groups were not statistically significant (P˃0.05). But the mean symptoms of fatigue (P=0.038) and diarrhea (P=0.037) were significantly higher in the sphincter maintenance group than the permanent colostomy group. The mean score of patients' quality of life was 53.43 ± 8.40 in the sphincter retention group and 52.23 ± 11.45 in the permanent colostomy group (P = 0.556). According to the results, the quality of life in the two surgical methods of sphincter preservation and permanent colostomy was not statistically significant. Therefore, treatment decisions should be made by informing patients, both based on their preferences and the physician's clinical judgment."

Background: Colorectal cancer patients with permanent colostomy may suffer stigma, negative coping style, and low quality of life at varying degrees, which may be improved by the mindfulness-based stress reduction (MBSR). In recent years, MBSR has been used in the comprehensive treatment of colorectal cancer with permanent colostomy, hoping to bring a positive outcome. However, the practical application effect of MBSR has not been elucidated so far. Therefore, this study conducted a meta-analysis to evaluate the effects of MBSR on stigma, coping style, and quality of life in colorectal cancer patients with permanent colostomy, providing reliable evidence for clinical application.Methods: Randomized controlled trials (RCTs) reporting MBSR on stigma, coping style, and quality of life in patients with permanent stoma of colorectal cancer published before December 2021 will be searched in online databases such as the PubMed, Web of Science, The Cochrane Library, Embase, China National Knowledge Infrastructure, Wanfang Database, China Biomedical Literature Database, and Chinese Scientific Journal Database. The quality of the literature will be evaluated using the risk of bias assessment tool in Revman 5.4. Meta-analysis will be performed using Revman 5.4 software.Results: The Social Impact Scale (SIS), Simplified Coping Style Questionnaire (SCSQ), and quality of life scale will be used to evaluate the effects of MBSR on stigma, coping style, and quality of life in colorectal cancer patients with permanent colostomy.Conclusion: This study will provide a reliable evidence-based basis for MBSR to reduce stigma, improve coping style, and improve quality of life for colorectal cancer patients with permanent colostomy.OSF REGISTRATION NUMBER:DOI 10.17605/OSF.IO/CD4PV.