A Descriptive, Cross-sectional Study Among Chinese Patients to Identify Factors that Affect Psychosocial Adjustment to an Enterostomy
Physiological, psychological, and social problems may affect adaptation to living with a stoma. A descriptive, cross-sectional study was conducted between March 2017 and June 2017 among patients culled from a manufacturer’s database to identify factors that influence psychosocial adjustment in Chinese patients with an enterostoma.
Patients with a history of ostomy surgery ≥1 month prior and who were ≥18 years of age, completed a primary school education, and able to communicate in Chinese were eligible to participate unless they had a history of psychosis, cognitive impairment, or participation in other research programs. After providing informed consent, participants completed a questionnaire that addressed demographic (age, gender, employment, educational level, marital status, medical payment method, living status, and area of residence) and stoma-related (date of surgery, preoperative stoma siting, ostomy appliance type, peristomal complications, regular defecation, stoma self-care ability, stoma-related communication with medical staff, level of understanding regarding stoma knowledge and care skills, appliance change knowledge/experience, and leakage history) factors. Social support was assessed using the 10-item Social Support Revalued Scale (SSRS), and 3 dimensions of adjustment (acceptance, continuous worry, and positive life attitude) were assessed using the 20-item Chinese version of the Ostomy Adjustment Inventory (OAI). Questionnaires were administered via an online survey platform. Data were analyzed descriptively, and single-factor analysis and stepwise multiple linear regression were applied to identify the factors that influenced the adjustment level. Incomplete (missing >2 questions), incorrect, or hastily completed (within 600 seconds) records were excluded from analysis. Of the 1109 persons who returned the questionnaire, 1010 (91.1%) completed the entire survey (564 men [55.8%] and 446 women [44.2%], mean age 56.62 ± 15.62 years); 823 (81.5%) had a colostomy and 187 (18.5%) had an ileostomy. The OAI dimension continuous worry was negatively and significantly associated with all 3 dimensions of the SSRS, including subjective support (r = 0.259), objective support (r = 0.259), and utilization of support (r = 0.289), while the dimension acceptance was positively associated with both subjective support (r = 0.082) and objective support (r = 0.074) (all P values <.05). Using multiple linear regression, residence area, peristomal complication, regular defecation, leaking, self-care ability, communication with medical staff regarding ostomy, understanding knowledge or skill needed for stoma care, utilization of social support, and total score of social support were found to be significantly associated with ostomy adjustment level (all P values <.05). Patients living in an urban area, with no history of peristomal complications, who had regular defecation, had not experienced leaking, had better self-care ability, frequently communicated with medical staff, had a high level understanding about knowledge or skill of stoma, and had higher social support scores had higher adjustment scores. Knowledge of the factors that enhance or hinder adaptation of the patient to the ostomy is an important tool in the clinician’s care armamentarium.
Colorectal cancer is a common malignant disease, ranking third in incidence in the world behind lung cancer and breast cancer. Since 1992, 1 million new colorectal cancer patients have been diagnosed every year worldwide, with an annual increase of 1.2% in morbidity.1 In China, the morbidity and mortality of colorectal cancer have increased in recent years, ranking it the fifth leading cause of death.2 In addition to the detrimental effect of cancer itself, most colorectal cancer survivors must deal with an ostomy as a part of their treatment.3 Ostomy refers to a surgical procedure that results in an artificial opening in the abdominal wall (stoma) through which bodily waste is excreted.4 In the United States, approximately 100 000 patients receive a colostomy or ileostomy every year,5 while in the United Kingdom, approximately 135 000 patients receive a neostoma every year, including more than 100 000 colostomy patients.6 In 2005, China had more than 1 million colostomy patients, with an annual rise of 100 000.7
Although a colostomy is regarded as life-saving surgery, it causes many changes to the body image and lifestyle of the patient; a phenomenological study found it to detrimentally affect self-image8 and impose long-term impacts on physical and psychological status.9 A systematic review10 and a literature review11 reported low quality of life (QoL) among patients with an ostomy.10,11 Furthermore, qualitative analysis12,13 has found that a low QoL score is mainly attributable to psychosocial issues. Therefore, it is of great importance to explore the factors that affect psychosocial adjustment in ostomates.
Globally, China has the highest rate of new cases of colorectal cancer every year (25.3 million), making up 18.6% of new colorectal cancer cases across the world in 2012.11 However, few studies have reported on psychosocial adjustments and potentially related factors in Chinese patients with ostomy.14-16 Hu et al15 conducted a retrospective, cross-sectional study among 129 colostomy patients in 5 hospitals in Guangzhou (Guanadong Province, China) using the Ostomy Adjustment Scale developed by Olbrisch and Ziegler.17 The authors observed that 33.3% of patients displayed a low and 63.6% of patients showed a medium adjustment level. Patient self-care ability, spouse’s acceptance of the stoma, and peristomal complications were associated with adjustment level.15 In their cross-sectional study, Cheng et al16 investigated 54 Chinese patients with a permanent colostomy and found that self-care ability was correlated with adjustment level, which was in line with the results of another cross-sectional survey by Su et al14 that evaluated 122 patients with a temporary colostomy. According to 2 descriptive cross-sectional studies,18,19 gender, family and social support, stoma self-care efficacy, interpersonal relationships, and the location of the stoma also may impact the adjustment level of ostomates.
A cross-sectional study20 found psychosocial adjustment plays an important role in self-management and is a critical factor in predicting the QoL of ostomates after surgery. Therefore, the aim of the current study was to identify factors that influence psychosocial adjustment in Chinese patients with an enterostoma.
Materials and Methods
Study design and population. From March 2017 to June 2017, enterostomy patients from the Coloplast Corp (Humlebaek, Denmark) Chinese database were invited to participate in the study. The company sent a study invitation letter and a link to complete an online questionnaire and patient consent form via the Wenjuanxing platform (www.wjx.cn), 1 of the largest online survey platforms in China. The 66 000 patients in the company’s database were from 22 provinces, 4 autonomous regions of ethnic minorities, and 4 directly controlled municipalities of China. The inclusion criteria for this study stipulated participants must be ≥18 years of age, have had surgery ≥1 month prior, have at least a primary school education, and be able to communicate in Chinese. Patients were excluded if they had a urostomy, a history of psychosis, cognitive impairment, and/or participation in other research programs. Patients who failed to answer at least 2 questions, provided wrong answers (eg, provided 2 responses to 1 question), or (because completion of the survey was expected 10 take 10 to 15 minutes) completed the questionnaire within 600 seconds were excluded.
The questionnaire was designed by the present researchers and had been preliminarily tested and improved in a study (unpublished) conducted in February 2017. In the preliminary study, 77 patients with colostomies were recruited from 3 hospitals in Beijing; 74 questionnaires were completed. The questionnaire was revised according to patient suggestions. To calculate the sample size for the current study, the standard deviation of the mean adjustment score was set to 10.25 ± 2.0, with a 2-sided α of 0.05 and β of 0.1. The sample size was estimated at 554.
The demographic characteristic variables collected included age, gender, employment (yes, no), educational level (≤9 years, >9 years), marital status (married, unmarried), medical payment method (self-paying, not self-paying), living status (live alone, not live alone), and residence area (urban, rural). Stoma-related data also were collected and included date of surgery, stoma siting before surgery (yes, no), type of ostomy appliance (1- or 2-piece), history of peristomal complications (yes, no), regular defecation (ie, whether the ostomate had a relatively fixed time of defecation and defecated 1 to 3 times every day after surgery; yes, no), stoma self-care ability (completely self-care, mostly self-care, relied mostly on others, relied completely on others), communication with medical staff regarding colostomy (never, sometimes [1 to 4 times per week], frequently [≥4 times per week]), level of understanding regarding stoma knowledge and care skills (complete, partly, do not understand [ie, ostomy patients do not understand knowledge and care skills for stoma at all]), when the patient learned how to change the ostomy appliance (before discharge, 1 week after discharge, other time), and stoma leakage during past 3 months (yes, no) (see Table 1). All data in the survey platform were kept anonymous; only core researchers in the current project had access to the data.
Social Support Revalued Scale (SSRS). Social support was assessed using the SSRS, which was formulated by Xiao and Yang21 in 1986. The 10-item SSRS evaluated 3 dimensions of social support: subjective support, objective support, and support utilization. Subjective support referred to how respected, supported, and understood the individual felt in his/her social context. Objective support referred to concrete support from society, such as financial support and support from a social network or organization. Support utilization was defined as how the individual used social support. The scoring system for the 10 items on the SSRS was as follows: items 1, 3, 4, and 5 represented subjective support; item 2 represented objective support; and items 8 through 10 represented social support. For items 1–4 and 8–10, there were 4 choices yielding scores of 1, 2, 3 and 4 (higher scores indicated more social support). For item 5 (which represented subjective support), there were 4 choices: A, no; B, very little; C, generally; D, all. These choices provided scores of 1, 2, 3, and 4, respectively. For items 6 (financial support) and 7 (psychological support), no source yielded a score of 0; if several sources of support were selected from a list of possible sources, a score commensurate with the number of sources selected was earned. The total SSRS score ranged from 11 to 60 points and was classified into 3 categories: low social support (<35 points), medium social support (35 to 47 points), and high social support (>47 points). The Cronbach α of the total scale was 0.896 and Cronbach α of the 3 dimensions were 0.849, 0.825, and 0.833, respectively.22
Ostomy Adjustment Inventory (OAI). The psychosocial adjustment level to the stoma was measured using the Chinese version of the OAI, which was translated and modified from the English version of the Ostomy Adjustment Inventory-23 (OAI-23) in 2011.23 The English version of the OAI-23 includes 4 dimensions and 23 items, including acceptance (9 items), continuous worry (5 items), social intercourse (4 items), and indignation (2 items).24 In contrast, the Chinese version of the OAI comprises 3 dimensions (acceptance, continuous worry, and positive life attitude) and 20 items. Responses were provided using a 5-category Likert scale ranging from 0 to 4 points, where 0 = strongly agree and 4 = strongly disagree regarding the dimension continuous worry and where 0 = strongly diasgree and 4 = strongly agree regarding the dimensions acceptance and positive life attitude. The total OAI scores ranged from 0 to 80 points and were classified into 3 categories: low adjustment level (<40 points), medium adjustment level (40 to 60 points), and high adjustment level (>60 points). A Cronbach α of 0.886 was found for the total OAI score, and continuous worry, positive life attitude, and acceptance were 0.704, 0.885, and 0.779, respectively.23 The Cronbach’s α for 2-week test-retest reliability were 0.836, 0.807, and 0.764 for continuous worry, positive life attitude, and acceptance, respectively.23 The Cronbach α of this scale was 0.913 and the Cronbach α of the 3 dimensions were 0.891, 0.872, and 0.864, respectively, according to the results of the preliminary (unpublished) study indicating that the translated Chinese version is highly reliable.
Ethical considerations. The current study was approved by the Ethics Committee of Xuanwu Hospital Capital Medical University (Beijing, China). The objective and method of research were explained to the patients before the questionnaire was made available online, and written consent of the patient or a family member was obtained.
Data collection. The questionnaire data were collected directly into the online survey platform. Only core researchers in the current project had access to data.
Data analysis. The general demographic data and stoma-related data were statistically described using mean and standard deviation. Qualitative variables were described using frequency and percentage. Single-factor analysis was conducted to analyze the adjustment level of the classified variables. A t test and 1-way analysis of variance were applied to analyze data with normal distribution and homoscedasticity. Kruskal-Wallis H and Mann-Whitney U tests were applied for data without a normal distribution and heterogeneity of variance. Pearson correlation analysis was performed to measure correlations between ostomy adjustment level and social support. An independent t test was used to compare the mean score of the overall psychological adjustment. Stepwise multiple linear regression was applied for regression analysis to identify the factors that significantly influenced the ostomy adjustment level. The inclusion criteria was 0.05, and the removal criteria was 0.10. Two-sided P <.05 was regarded as having statistical significance. SPSS, version 22 (IBM, Armonk, NY) was used for all data analysis.
Baseline characteristics. Of the 1109 invited persons who returned their questionnaire and signed a patient consent form through the online survey platform, 99 were excluded (80 patients had a urostomy, 10 finalized the questionnaire within 600 seconds, 7 had incorrect answers, and 2 were <18 years of age). The remaining 1010 patients included 564 men (55.8%) and 446 women (44.2%), with a mean age of 56.62 ± 15.12 years. The majority of patients (686, 67.9%) were younger than 65 years, employed (532, 52.7%), married (875, 86.6%), did not self-pay for medical treatment (849, 84.1%), did not live alone (962, 95.2%), and lived in an urban area (709, 70.2%). Of these patients, 651 (64.5%) had their stoma sited before surgery, 823 patients (81.5%) received a colostomy (678 [67.1%] permanent, 332 [32.9%] temporary) and 187 (18.5%) had an ileostomy. After enterostomy surgery, 195 (19.3%) patients experienced peristomal complications; the 3 most common complications were irritant dermatitis, allergic dermatitis, and parastomal hernia, accounting for 48.7%, 19.5%, 15.6%, respectively. Eight hundred, one (801, 79.3%) did not defecate regularly, and 732 (72.5%) experienced leakage during the past 3 months. Regarding self-care ability, 251 patients (24.9%) performed their own care, 345 patients (34.2%) performed most of their ostomy care, 264 patients (26.1%) mostly relied on others, and 150 patients (14.8%) completely relied on others. More than half of the patients (558, 55.2%) communicated with medical staff regarding their enterostomy and 682 (67.5%) learned how to change the appliance before discharge (see Table 1).
Ostomy adjustment and social support levels. The mean OAI score was 33.25 ± 8.44, representing a low adjustment level in general (see Table 2). The mean scores OAI scores were 14.80 ± 7.53, 8.52 ± 1.91 and 9.92 ± 2.30 for continuous worry, positive life attitude, and acceptance, respectively. The average social support score was 40.16 ± 8.22, which represents medium levels of social support (see Table 3). The dimension continuous worry was significantly associated with all 3 dimensions of social support including subjective support (r = 0.259), objective support (r = 0.259), and utilization of support (r = 0.289) (see Table 4), while the dimension acceptance was associated with both subjective support (r = 0.082) and objective support (r = 0.074) (all P values <.05). The total OAI score was significantly associated with all dimensions of social support.
Ostomy adjustment score in relation to risk factors. By comparing the distributions of the ostomy adjustment score to the categories of different risk factors, the authors observed that patients with a higher education level, who were not self-paying, who lived in urban areas, who did not have peristomal complications, who defecated regularly, and who had not experienced leaking during past 3 months had higher OAI scores (see Table 5). However, in multiple linear regression, only area of residence, peristomal complications, regular defecation, leaking, self-care ability, communication with medical staff regarding ostomy, stoma knowledge or care skills, utilization of social support, and total score of social support were found to have statistical significance (all P values <.05) (see Table 6).
The current study identified several factors that may influence the psychological adjustments to having a stoma among Chinese patients. Area of residence, having a history of peristomal complications, regular defecation, leaking of the appliance, self-care ability, communication with medical staff regarding the stoma, self-rated confidence in stoma knowledge or care skills, and social support were associated with ostomy adjustment level.
The mean adjustment score was 33.25 ± 8.44, which was slightly lower than the results observed in a prospective, multicenter study by Karadag et al25 in Turkey (N = 135, mean OAI-23 score of 48.63 ± 13.75). This difference may be due to the fact that the Chinese version of the OAI only contained 20 items compared to 23 items in the English version used in the Karadag study.25 However, the mean score in the current study was comparable to another descriptive Chinese study16 using the same Chinese version of the OAI-20 (mean score 45.112 ± 13.358).
The incidence of colorectal cancer has been increasing rapidly in recent years in China and has resulted in an annual increase of 100 000 new ostomy patients.7 Thus, attention regarding how to improve adjustment to an ostomy is increasing. The current study revealed ostomy patients who had better self-care ability, frequently communicated with medical staff, had a higher level of understanding/knowledge/skill of stoma care, and lived in urban area had significantly better adjustment scores. Also, the results showed that higher social support scores were significantly correlated with higher adjustment level, which indicated that more support from family, friends, and society led to a higher adjustment level. This finding was in line with a prospective multicentered study by Piwonka and Merino26 (N = 60), the empirical study by Karadag et al25 (N = 135), and a cross-sectional study by Wang and Chen27 (N = 301). The clinical medical staff should encourage the patient to take an active part in social activities and work hard to psychologically accept the stoma, as well as increase the patient’s confidence and ability to manage the stoma.28
Some patients have been found to be more adaptive after surgery because they had obtained self-care skills.29 However, in the current study only 24.9% of patients frequently communicated with the medical staff. Experience has taught practitioners that through communication with medical staff, the patient may obtain information on disease development, be involved in treatment decisions, and acquire guidance regarding self-care, making it easier to adapt to the stoma. Medical staff needs to communicate with the patient as necessary and provide more channels to communicate health information based on patient preferences.
This study also revealed 19.3% of patients experienced peristomal complications. This is somewhat lower than the results of 2 other Chinese studies that reported rates of 35.66% and 31.5%.12,15 Patients with peristomal complications had lower levels of social psychological adjustment, which was supported by the results of a prospective study30 and a literature review.31 The most common complications in the current study were irritant dermatitis (48.7%), allergic dermatitis (19.5%), and parastomal hernia (15.6%). In addition, complications such as stomatorrhagia and stoma prolapse often led to pain that affects the normal use of ostomy bag, thereby lowering the adjustment level and patient QoL.32
The occurrence of leaking 3 months after surgery and regular defecation are factors that influenced adaptation level. This study found 72.3% of patients experienced leakage. Patients who experienced leaking had a lower adjustment level than those who did not, which underscores the need to enhance patient education during hospitalization, improve stoma-related knowledge and care skills, arrange for follow-ups after discharge, and encourage timely assistance and guidance from professionals. Furthermore, 79.3% of patients had irregular defecation. Enterostomy patients may have an increase in defecation frequency and irregular times of defecation because colon movement is not easy to control.33 Therefore, clinicians need to 1) focus on establishing regular defecation for the patient as soon as possible after surgery, 2) direct the patient to receive regular defecation training, 3) help the patient re-establish regular defecation, and 4) encourage patients to take full advantage of enterostomy outpatient services and enterostomal therapists in order to improve continuity of care.
The adjustment level of the patient changes with time and is a dynamic process. Additionally, the sample size does not represent enterostomy patients as a whole. The questionnaire for this research was distributed through a network platform, so the return rate was not ensured. In addition, the reason for the ostomy was not considered. The reason may have had an undocumented influence on adjustment, per previous research.
This research shows that ostomates have low social psychological adjustment levels to their new reality. Social support, stoma self-care ability, communication with medical staff, peristomal complications, understanding related to stoma knowledge and skill, utilization of support, the presence of leaking within 3 months, residence area, and regular defecation were found to influence the adjustment level of enterostomy patients. Therefore, clinicians need to perform specific interventions based on risk factor evaluations during clinical care to help patients improve their adaptation to the stoma and subsequently improve their quality of life. Additionally, the impact of Chinese culture should be considered when generalizing this finding internationally. n
The authors are grateful to the patients, families, and caregivers who participated in this study.
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Ms. Xian is an enterostomal therpist; Ms. Y. Zhang is a registered nurse; Ms. Yang is a supervisor nurse; Ms. X. Zhang is a nurse practitioner; and Ms. Wang is a vice professor, Xuanwu Hospital Capital Medical University-Department of General Surgery, Xicheng District, Bejing, PR China. Please address correspondence to: Xinran Wang, Vice Professor, Xuanwu Hospital Capital Medical University-Department of General Surgery, No. 45 Changchun Street, Xicheng District, 100053, Beijing, PR China; email: email@example.com