Author Affiliations: Center for Organ Transplantation and Department of Surgery, Ruijin Hospital, Shanghai Jiaotong University School of Medicine, Shanghai 200025, China (Xing L, Li JN and Tao R); Nursing School, Shanghai Jiaotong University School of Medicine, Shanghai 200025, China (Chen QY and Zhang Y); Department of General Surgery, Central Hospital of Minhang District, Shanghai 201199, China (Hu ZQ)

Corresponding Author: Ran Tao, Professor, MD, FACS, Center for Organ Transplantation and Department of Surgery, Ruijin Hospital, Shanghai Jiaotong University School of Medicine, 7W Surgical Building, 197 2nd Ruijin Road, Shanghai 200025, China (Tel: +86-21-64923400; Email: taohdac9@yahoo.com)

 

© 2015, Hepatobiliary Pancreat Dis Int. All rights reserved.

doi: 10.1016/S1499-3872(15)60333-2

Published online January 19, 2015.

 

 

Acknowledgement: We thank Ms. Yi Cheng for her invaluable expertise in biomedical statistics.

Contributors: XL, CQY, ZY and TR proposed and designed the study. XL, CQY and HZQ did the survey. XL and CQY contributed equally to the article. TR wrote and revised the article. All authors contributed to the discussion and revision of the manuscript. TR is the guarantor.

Funding: This study was supported by grants from the National Science Foundation (81001324, TR), Sub-topics of Special Issue of the Industry Fund from Ministry of Health (TR, PI Prof. Yong-Feng Liu) and Endowed Professorship ("Oriental Scholar") funding from Shanghai Municipal Science and Technology Committee (TR).

Ethical approval: This study was approved by the Ethics Committee of Ruijin Hospital, Shanghai Jiaotong University School of Medicine.

Competing interest: No benefits in any form have been received or will be received from a commercial party related directly or indirectly to the subject of this article.

 

 

BACKGROUND: Liver transplantation (LT) is a viable treatment for patients with end-stage chronic liver diseases. The main aim of LT is to prolong life and improve life quality. However, although survival after LT continues to improve, some aspects of recipient's health-related quality of life such as self-management and self-efficacy have been largely ignored.

 

METHODS: A total of 124 LT recipients were included in this study. Questionnaires for general health status information and a "Self-Management Questionnaire for Liver Transplantation Recipients" modified from the Chinese version of "Chronic Disease Self-Management Program Questionnaire Code Book" were used in the survey. Data were collected by self-administered questionnaires.

 

RESULTS: The overall status of self-management in LT recipients was not optimistic. The major variables affecting the self-management of LT recipients were marital status, educational level and employment. The overall status of self-efficacy in LT recipients was around the medium-level. Postoperative time and self-assessment of overall health status were found as the factors impacting on self-efficacy.

 

CONCLUSIONS: The self-management behavior of LT recipients needs to be improved. The health care professionals need to offer targeted health education to individual patients, help them to establish healthy lifestyle, enhance physical activity and improve self-efficacy. The development of the multilevel and multifaceted social support system will greatly facilitate the self-management in LT patients.

 

(Hepatobiliary Pancreat Dis Int 2015;14:253-262)

 

KEY WORDS: liver transplantation; self-management; self-efficacy; quality of life; questionnaires

Self-management was originally proposed for better management of chronic illnesses. It is defined as the ability of the patient to deal with all chronic illness entails, including symptoms, treatment, physical and social consequences, and lifestyle changes inherent in living with a chronic condition. With effective self-management, the patient can monitor his or her condition and make appropriate cognitive, behavioral, and emotional changes to maintain a satisfactory quality of life.^[1] Since Creer and co-workers first introduced a self-management model into a pediatric asthma program in the 1970s, this model has been widely used in the intervention and control of chronic diseases. In the 1980s, Lorig and co-workers from the Stanford Patient Education Research Center established Chronic Disease Self-Management Program (CDSMP), which was originally designed for patients with arthritis and later extended to a variety of chronic disease entities including hypertension, diabetes, asthma, chronic nephropathy and mental illness. Nowadays, the project has been carried out in many countries around the world, and it has been confirmed by numerous evidence-based studies that self-management behaviors designed to promote patient autonomy contribute to positive health outcomes after therapeutic interventions. It can not only dramatically improve the health status of the participants, but also significantly reduce their hospitalization days and medical costs.^[2]

 

The concept of self-efficacy was originally proposed by American social learning psychologist Bandura. Self-efficacy refers to one's belief in one's ability to accomplish a specific behavior or succeed in specific situations (e.g. achieve a reduction in symptoms), and is the basis of human motivation, health and individual achievement.^[3] In the past 20 years, the self-efficacy theory has been widely applied in the fields like self-study and health promotion, especially in the management of chronic diseases, and has led to improved clinical outcomes.

 

Liver transplantation (LT) has been widely recognized as the most effective and ultimate treatment modality for end-stage liver diseases. Although the survival rate of patients undergoing LT is highly satisfactory, one of the most important objectives for LT at the present time is to achieve the best possible quality of life and psychosocial functioning for these recipients.^[4,5] The post-transplantation life can be demanding and burdensome for the patients and their families. They not only need to take care of daily lives and medications, communicate with healthcare providers, schedule physician appointments and clinic visits, at certain points they may face with rejection, infection, neoplasm, recurrence of original diseases, nephropathy, metabolic syndrome and surgical complications; they may also be constantly bothered by psychosocial consequences such as social isolation, career disruption, financial crisis and emotional burden of illness. Most of the time, the recipients have to deal with these problems themselves. It is necessary to change the routine medical practice towards patients-centered mode in this particular patient population. Therefore, self-management has become increasingly critical for long-term transplant survivors, which is believed to play a vital role in the improvement of quality of life and health status. Despite its significance in improving the outcome across a variety of chronic illnesses, little work has been done regarding the impact of self-management on health outcomes after adult organ transplantation,^[6-8] especially in LT recipients. One study^[9] determined the impact of fitness exercise on self-management, self-efficacy and health status, and found that it could significantly improve patients' self-management behavior and enhance their self-efficacy. Recently, two studies^{[10, 11]} conducted in the mainland of China shed light on the self-management behavior in a cohort of the LT population. Both studies reached a consensus that the overall self-management behaviors with respect to their LT status were at the low level. Similarly, although there were several studies regarding the perceived self-efficacy of renal transplantation recipients,^[12-14] only one comparing self-efficacy among LT candidates and recipients was reported.^[15] To our knowledge, no such study has been carried out in the mainland of China.

 

The current study attempted to reveal the current status of postoperative self-management behaviors and self-efficacy and their impact on medical outcomes in a group of LT recipients. The majority of our patients were long-term survivors after transplantation. We discussed the influencing factors and provided rational recommendations for targeted and individualized health education in this particular population. We aimed to help the health care professionals to understand the problems and needs of the LT recipients when they carry out self-management support and implement targeted interventions.

 

 

From October to November, 2012, part of the LT recipients visiting the transplant clinic at Ruijin Hospital and the members of the Shanghai Cancer Club who fulfilled the inclusion criteria of the current study were invited to participate in the survey. The inclusion criteria were: adult recipients, primary LT, recipients capable of normal comprehension, and a survival period of more than 6 months after transplant. Exclusion criteria included disturbance of consciousness, mental illness and inability to self-care. A total of 130 LT recipients agreed to participate in the survey and completed a questionnaire that included measures of self-management, self-efficacy and health status. Data were collected by self-administered questionnaires. Prior to the survey, we explained the purpose, meaning and the confidentiality to the potential candidates. Informed consent was obtained from individuals who were eligible and willing to participate in the study. The respondents were requested to reply to the questionnaire according to their real conditions. Questionnaires were collected and checked for omissions which were completed on site. Those with inferior educational level were provided with professional assistance and detailed but unbiased explanation of each item of the questionnaire to ensure the fidelity of their choices. A total of 128 of 130 questionnaires were returned with a collection rate of 98.5%; 124 (96.9%) out of the 128 were valid questionnaires. Among them, 83 (66.9%) were male and 41 (33.1%) female. They all received LT and lived in the Shanghai metropolitan area. This survey was approved by the Ethics Committee of Ruijin Hospital, Shanghai Jiaotong University School of Medicine.

 

There were two questionnaires for LT recipients: a general documentation questionnaire and a self-management questionnaire. General documentation questionnaire was used to collect some basic patient information, including gender, age, marital status, education, employment status, income/revenue, source of medical expenses, time of transplant, primary liver diseases, chronic co-morbidities, postoperative complications, number of re-admissions, current medications and follow-up schedules.

 

We adapted a "Self-Management Questionnaire for Liver Transplantation Recipients" modified from the Chinese version of "Chronic Disease Self-Management Program Questionnaire Code Book", which was created by Dr. Lorig et al from the Stanford Patient Education Research Center (http://patienteducation.stanford.edu/research/). This scale form has been widely used in the self-management of patients with chronic diseases. Its Chinese version has been tested in the study of self-management in Chinese patients suffering from chronic diseases with a high fidelity.^{[15, 16]} Considering the uniqueness of LT patients, we blended elements from a series of guidelines for LT recipients at home and abroad to our questionnaire, such as Guidelines for Hepatic Diseases and Liver Transplantation,^[17] Resuming Life after Liver Transplant (http://www.ohsu.edu/xd/health/services/transplant/liver/post-transplant/education-and-protocols/index.cfm) and Liver Transplant Handbook: A Guide for Your Health Care after Liver Transplantation (2007)(http://www.itns.org/uploads/ITNS_Liver_Transplant_Booklet.pdf). The questionnaire included two major parts, self-management and self-efficacy. Self-management included four sub-categories: exercise, cognitive symptom management, communication with physicians, and lifestyle management. Exercise was assessed in terms of duration (minutes per week) of exercises performed (e.g. stretching, strengthening, and aerobic). Likert scale was rated on a five-point: 0, no exercise; 1, <30 minutes per week; 2, 30-59 minutes per week; 3, 1-3 hours per week; and 4, >3 hours per week. Cognitive symptom management was assessed using five-item scales, with each item rated on a six-point scale (0-5) anchored by none of the time and all the time, which mainly represented the patients' ability to deal with changes under different conditions. The score for cognitive symptom management was the mean of the five items, with higher scores indicating greater use of cognitive techniques. Communication with physicians was assessed for LT recipients' basic ability of communication, using four-item scales with each item rated on a six-point scale (0-5) anchored by never and always. The score for communication with physicians was the mean of the four items, with higher scores indicating improved communication with physicians. Lifestyle management which included four sub-categories (disease control, diet, sanitation and activity) with a total of thirty items was used to observe the impact of diseases and LT on the recipients' lives. It was assessed using thirty-item scales, with each item rated on an eight-point scale (1-8) anchored by no influence and influence as great as it could be. The score for lifestyle management was the mean of thirty items, with higher scores indicating the achievements of establishing healthy lifestyle as the need of disease and therapy. According to the total scoring indicator, average of four sub-categories scoring indicators, level of self-management was divided into two ranks called "less than satisfactory" and "good". Scoring indicator ≤60% was ranked as "less than satisfactory", while scoring indicator >60% was ranked as "good". Self-efficacy was assessed using the six-item self-efficacy scale for managing chronic diseases. It covered several domains that were common across many chronic diseases, symptom control, role function and emotional functioning. Each item was scored from 1 (not at all confident) to 10 (totally confident). The score for the scale was the mean of the six items, with higher scores indicating greater self-efficacy, the scoring indicator was calculated. In accordance with the scoring indicators, the level of self-efficacy was ranked as high, medium and low. Scoring indicator ≥80% represented a high level of self-efficacy, 60%-80% meant medium, and ≤60% stood for low. Reliability was tested by examining internal consistency (Cronbach's alpha). Cronbach's alpha determines the internal consistency or average correlation of items in a survey instrument to gauge its reliability. A pilot study was done in 15 LT recipients using our questionnaire with a Cronbach's alpha index of 0.874. In order to evaluate the validity of the questionnaire, we sent expert assessment form to four medical and nursing experts as well as one epidemiologist with a Cronbach's alpha reliability coefficient of 0.873. The expert assessment form included four parts: introduction, self-management questionnaire for LT recipients, grades, and comments. In the introduction section, we introduced the study in general and explained the evaluation criteria for each item which was clear. Meanwhile, it represented related scale effectively and covered all aspects to be measured. Experts graded the correlation between each item and related scale with 1, 2 and 3. "1" indicated no correlation which could be excluded; "2" indicated more relevant but needed to modify; "3" indicated perfect correlation without modification. Then experts provided suggestions and comments for low grades. According to experts' comments and pilot study results, we modified the scales to ensure the accurate meanings.

All data from questionnaires were entered into a computer database set up for the study and analyzed by IBM SPSS Statistics 19. The general and medical information, self-management and self-efficacy status were described by frequency, percentage, mean and standard deviation (SD). Scoring indicator was calculated for each item using the following equation: Scoring indicator=(Actual score for the dimension/Full score for the dimension)×100%. The total scoring indicator was calculated instead of the total score of self-management behavior since exercise management bore a different unit (minutes/week). The Chi-square test or Wilcoxon's rank-sum test which doesn't require the population to have normal distributions was used wherever indicated. Fisher's exact test instead of the Chi-square test was conducted when the expected value in any of the cells of a contingency table was below 5. Further partitioning the Chi-square test was conducted to detect difference between self-efficacy level of low and medium, medium and high as well as low and high (P value was 0.017 after adjustment). A multi-way analysis of variance (ANOVA) was conducted to explore the relationship between overall self-management behaviors, self-efficacy and socioeconomical elements, respectively. A P<0.05 was considered statistically significant.

 

 

We investigated 124 LT recipients who responded with an effective questionnaire. The mean age was 57.0±9.2 (18-81) years old; the mean postoperative time was 76.7±29.2 (14-149) months. In the recipients, 66.9% were male, and 87.1% were married. As for educational background, 65.3% of the recipients were categorized into lower education group (high school and below). And 56.5% of the recipients were unemployed at the time of the survey. For monthly family income, 58.1% of the recipients earned 1000-3000 RMB per month (low income group). The medical expenses were partially reimbursed for most (96.0%) of the patients. In this series, 58.9% of the recipients had benign liver diseases, whereas 41.1% suffered from malignancies as indications for operation. In particular, 46.8% had viral or alcoholic liver cirrhosis, 41.1% had hepatocellular carcinoma and 12.1% had other liver diseases such as hepatic hemangioma. For postoperative complications, 44.4% of the patients were free of complications; 30.6% suffered from postoperative infection; 10.5% had graft rejection; 6.5% had biliary complications and 8.1% had other medical complications such as hypertension, hyperlipidemia, etc. Most of the patients with biliary complications received ERCP with balloon dilatation or stent placement. None of the patients in this series received retransplantation, none had received hepatobiliary pancreatic surgery for certain complications. HCV related end-stage liver diseases are a relatively rare indication for LT in the mainland of China. There were only two patients who were transplanted for HCV related end-stage liver diseases, one had HCV recurrence after transplantation but didn't receive any antiviral treatment. In general, only 10.5% of the patients returned for a follow-up visit more than 4 times per month, whereas 38.7% had clinic visits less than 3 times per month. According to the self-rated assessment, most of the patients regarded their health status as "good" (52.4%) and their health distress as "slight" (98.4%, Table 1).

 

Self-management in LT recipients is mainly composed of exercise, cognitive symptom management, communication with physicians and lifestyle management. Lifestyle management can be further broken down into disease control, diet, sanitation and activity. As indicated by the scoring indicator, the elements of self-management ranked from high to low as lifestyle management, communication with physician, cognitive symptom management and exercise. Within lifestyle management, the elements ranked from high to low as disease control, diet, sanitation and activity (Table 2).

 

For exercise, none of the sociodemographic factors had statistically significant relationship except gender. Male patients spent longer time in sports than their female counterparts (Table 3). Marital status and level of education had statistically significant relationships with cognitive symptom management. Married patients performed better than those who didn't have a spouse in cognitive symptom management. Patients who received higher education (college and above) also performed better in cognitive symptom management than those who received lower education (high school and below) (Table 3). Next, we performed the Chi-square test and found none of the items was related to communication with physicians except for educational level. Patients who received college or higher education performed significantly better in communication with physicians than those who had lower education (Table 4). We further found that gender was related to general lifestyle management. Female patients were more capable of lifestyle management than males (Table 4). Within the category of lifestyle management, none of the socioeconomical elements was related to sanitation except for gender and follow-up frequency. Female recipients had better sanitation in comparison to male recipients. Recipients who were followed up once or twice a month had the best performance in sanitation control, followed by those who were followed up 3-4 times per month, whereas LT recipients who were followed up more than 4 times per month had the worst capability in sanitation (Table 4). Furthermore, a multi-way ANOVA was also conducted to explore the relationship between the overall self-management behaviors and the socioeconomical elements. A full model which was first considered included the socioeconomical elements as well as their corresponding two-way interactions as factors, and the self-management total scoring indicator as the dependent variable. The multi-way ANOVA based on the full model showed no significant factors (P>0.05) and P values of marital status, education level and employment were under 0.1. Therefore, socioeconomical elements which were statistically significant for a certain dimension of self-management behaviors as well as employment were selected into a corrected model. The ANOVA based on the corrected model showed that marital status, education level and employment had significant impact on the total scoring indicator of self-management behaviors (Table 5).

 

The level of self-efficacy was ranked as high, medium and low based on the scoring indicator as described in the method section. The highest score among respondents was 10 and the lowest was 1. The average score was 7.26±2.0 with a scoring indicator 72.58%±20.00%. It could therefore be concluded that self-efficacy of LT recipients was at medium level. To explore the relationship between sociodemographics and self-efficacy of LT recipients, we performed the Chi-square test. Gender, source of medical expenses, postoperative time and self-rated health were identified to be associated with self-efficacy of patients. Further partitioning Chi-square test was conducted to detect differences between two self-efficacy levels (P value was 0.017 after adjustment). For gender and source of medical expenses, results of partitioning Chi-square test showed that there was no significant difference between the two groups (low vs medium, medium vs high, or high vs low). For postoperative time, statistical significance existed between the medium and high groups. The percentage of high self-efficacy in patients of 1-5 years post-transplantation was 88.0%, which was significantly higher than that in those beyond 5 years (45.6%). As far as self-rated health was concerned, statistical significance was noted between the self-efficacy levels of low and medium. The percentage of medium self-efficacy in recipients who rated their overall health status as excellent, very good, good, fair and poor was 50%, 90%, 64%, 36% and 0%, respectively; whereas the percentage of low self-efficacy in recipients who rated their overall health status as excellent, very good, good, fair and poor was 50%, 10%, 36%, 64% and 100%, respectively. Although the percentage of medium self-efficacy level and low self-efficacy level was the same in people who rated their health as excellent, people who rated their overall health status as very good and good had a greater percentage of medium self-efficacy level but less low self-efficacy level. On the contrary, those who rated their overall health status as fair and poor had a lower percentage of medium but a higher proportion of low self-efficacy level (Table 6). A multi-way ANOVA was conducted to explore the relationship between the self-efficacy and the socioeconomical elements. It was less powerful to detect significant factors in the full model. Therefore, the corrected model including socioeconomical elements that were shown to be associated with the self-efficacy status by the Chi-square test was used in multi-way ANOVA test. The results showed that only postoperative time and self-rated health had significant impact on the total scoring indicator of self-efficacy (Table 7).

 

Since the original liver diseases have a major impact on the long-term outcome of the grafts and recipients, it is arguable that the primary liver disease entities can pose potential impact on the self-management behaviors and perceived self-efficacy after transplantation. Therefore, we compared the self-management behaviors and self-efficacy under different operation indications. Statistical analysis implied that there was no difference in the self-management behavior or self-efficacy between patients who had benign liver diseases or malignancies before transplantation.

 

 

The goal of self-management is to empower individuals to cope with disease and live better lives with fewer restrictions from their illness through development of self-efficacy. Self-management has been reported to benefit people with chronic illnesses in many ways, such as better physical functioning, improved psychosocial well-being, less significant symptoms, fewer exacerbations of conditions, and better quality of life.^[16-20] On the other hand, it helps to reduce disease prevalence, minimize emergency department visits, reduce hospital admissions and length of stay, and therefore cut the health burden and benefit the whole health system. The self-management of organ transplant recipients mimics the management of patients with chronic illnesses in many aspects. It moves from provider focused care of acute illness ("acute care model") to the more continuous and patient centered care ("chronic care model"). The long-term goal is function and comfort instead of cure (one has to live with a functioning graft for the rest of life); the role of the doctors and nurses changes from primary health-providers to tutors and partners, and the sites of care change from clinic and hospital to community. Before implementation of any interventions to improve the self-management skills and self-efficacy in the LT recipients, we attempted to have an overall picture of the current self-management and self-efficacy status in this specific population using a well-established evaluation instrument with minor modifications. We also looked at the potential influencing factors which might be related to the self-management behaviors and perceived self-efficacy so as to implement more targeted and individualized interventions to this particular population.

 

By investigating 124 cases of LT recipients who survived more than 6 months, we determined that the self-management behavior in these patients was far from satisfactory. As shown in Table 2, scoring indicators of exercise, cognitive symptom management and communication with physicians were all less than 60%, indicating poor self-management in these three items. Firstly, the scoring indicator for exercise was only 12.24%, which was the lowest among all subcategories. Gender was identified as a potential influencing factor for exercise. Male recipients generally spent longer time in physical training than female recipients. Previous studies showed that proper exercises facilitate the recovery of post-transplant recipients^{[21, 22]} and help to reduce the incidence of medical co-morbidities^[23] such as insomnia, hypertension, obesity and osteoporosis. Both physical fitness and health-related quality of life were improved after exercise.^[24] Group participation in a fitness program supported the achievement of self-management activities, high amounts of self-efficacy and improved health outcomes.^[9] Therefore, the benefit of exercise must be clearly conveyed to the patients during each follow-up or during the self-management program course. An appropriate and step-wise improvement in training scheme may help them consciously adhere to exercise.

 

Secondly, the respondents also scored low in cognitive symptom management. Cognitive symptom management mainly reflects the patients' ability to cope with changes in condition. Among the five sub-items in this category, "tell yourself to be optimistic" and "exchange your feelings with other LT recipients" scored relatively high, indicating that transplant recipients are more inclined to cope with changes in condition via self-encouragement and peer support. In recent years, many transplant recipient clubs have been established in the mainland of China, which greatly strengthen the ties between the patients. Marital status and educational level were the main factors affecting cognitive symptom management. Married patients were more likely to obtain attention, care, comfort and encouragement from their spouse and family. Patients who received higher education were better in cognitive symptom management than those with less educated, which was consistent with the previous study.^[10]

 

Thirdly, although the respondents scored higher in communication with physicians than in exercise and cognitive symptom management, they still did not achieve good performance. The communication skills are related to patients' educational level, most likely due to the fact that well educated patients are good at self health care and self-management and many of them are skilled in learning knowledge about transplantation from books and internet; whereas less educated patients tend to have poorer receptivity and comprehension, therefore may have communication problems with health care professionals. Satisfactory doctor-patient communication will enhance the patients' trust, thereby strengthening the medical compliance and transplant outcome as well.^[25] Besides physicians, the critical roles of transplant coordinators need to be reinforced in the long-term self-management of the transplant recipients. A previous study^[26] showed that many patients attributed their non-adherence to unsatisfactory follow-up. Organ transplant recipients mainly only attend the outpatient clinic for follow-up, lack of systematic medical instructions outside the hospital may result in patients' inappropriate attitude towards disease and insufficient healthcare knowledge. Also their physical discomfort and health issues can not be managed timely. A study^[27] conducted in UK proved that follow-up of renal transplantation recipients by telephone consultation is a safe, timely, effective, efficient and sustainable patient-centered care modality. Therefore, a standardized follow-up system for transplant recipients must be established, the coordinators are expected to address the patients questions and issues promptly, provide medical support and be good liaison between the transplant physicians and patients.

 

Lastly, the respondents scored highest in lifestyle management with disease control, diet and sanitation scoring more than 60%. Again, gender was a major influencing factor. Female patients were more capable of lifestyle management than their male counterparts, and they were more concerned about changes in health status and physical fitness, and prone to adhere to the treatment plan. This was somehow contradictory to a previous report which revealed that female recipients had more difficulty than their male counterparts in adjusting the psychosocial consequences of the procedure.^[4] Such difference might be due to different cultural background between the two studies. Among the items under the category of lifestyle management, disease control and diet scored relatively high. The long-term suffering from end-stage liver diseases, scarcity of donor organs and high medical expense make the patients cherish the opportunity of a second life and pay special attention to the liver allograft. Most patients report taking medications as scheduled and doing regular follow-ups, and abide by the postoperative dietary restrictions. In contrast, the respondents scored relatively low in sanitation management, which was strongly correlated to gender and follow-up frequency. Female patients were more capable of sanitation management than male counterparts, which is consistent with the role a woman plays in a traditional Chinese family. Most LT recipients need to take immunosuppressive medications for the rest of their lives, resulting in hypoimmunity and susceptibility to various infections. Therefore, medical staff should highlight the importance of personal and family sanitation in their daily life in order to lower the risk of opportunistic infections. Activity management within the category of lifestyle management also scored low. The results of multi-way ANOVA showed that employment had statistically significant relationships with the total scoring indicator of self-management behaviors. The 43.5% of the respondents in this study remained employed after the operation. The percentage was higher than that reported by the United Network for Organ Sharing database, i.e. only 24.4% of the LT recipients were employed within 24 months after transplantation.^[28] One of the principal goals of LT is to prolong the length of life and facilitate return to work. Studies have shown that recipients who were employed after transplantation had significantly better functional status and health-related quality of life than those who were unable to keep a job,^[28] and the majority of employed patients experienced improved working capacity after LT.^[29] Employment can help the patient to build up self-esteem, assume a functional social role and develop better interpersonal relationships. However, we shouldn't ignore the fact that most organ transplantation recipients have various degrees of social dysfunction, manifested as inability to work, being limited to light work or low working ability. Several variables such as age between 18 and 40 years, male gender, college degree, Caucasian race, pretransplant employment, medical insurance, health and disability status prior to transplant, the absence of diabetes mellitus, the number of hours worked and type of job prior to transplantation, high physical functioning and low model of end-stage liver disease (MELD) score were associated with post-transplant employment,^{[28, 30-32]} while patients with alcoholic liver disease or depression had a significantly lower rate of employment.^{[28, 33]} Therefore, whether one should resume employment and what kind of work one chooses should be individualized.

 

The current survey also revealed the medium level of self-efficacy among the LT recipients, suggesting most of the patients are confident with self-management behaviors after the operation, the majority of them feel revived and are quite optimistic to accept the changes in work and life after surgery. Gender was identified to be associated with the self-efficacy of the patients. In particular, males were overrepresented in both high and low self-efficacy, the reason for such polarization hasn't been clear so far. Postoperative time and self-rated health were identified to have significant impact on the overall status of self-efficacy. People who rated their overall health status as very good and good had a greater percentage of medium self-efficacy level but less low self-efficacy level while people who rated their overall health status as fair and poor had a lower percentage of medium but higher proportion of low self-efficacy level. This phenomenon indicated that successful experience has great impact on self-efficacy. This is consistent with the Bandura's self-efficacy theory which indicates performance accomplishment is the most important source of self-efficacy. Therefore, the healthcare personals should guide the patients to effectively adjust the mentality, help them get used to the changes in lifestyle after surgery, obviate negative mood like anxiety or depression, build up self-confidence and improve self-efficacy. Postoperative time can also affect the patient's perceived self-efficacy. Quite surprisingly, between self-efficacy levels of medium and high, patients whose post-transplant time was within 5 years had a higher self-efficacy than those who were beyond 5 years of their transplant. A possible explanation for this result is that those who don't have a satisfactory recovery or have late-onset complications and recurrence of original liver diseases are prone to develop negative moods over time. It may also be related to the reduced compliance to treatment. Therefore, for those long-term survivors, it is the medical care professionals' responsibility to constantly remind the patients that they shouldn't be negligent to their health and medical conditions, and provide prompt medical and psychosocial supports to ensure the long-term well-being of these patients.

 

Despite several novel findings in the current survey, we have to acknowledge the caveats. The questionnaire used to investigate the self-management status of LT recipients is based on the "Chronic Disease Self-Management Program Questionnaire Code Book", which was designed for patients from Western countries. The self-management measuring scale which complies with the Chinese culture characteristics is awaiting future development. Furthermore, the conclusion can't be fully generalized due to limited sample sources and exclusion of patients with disturbance of consciousness, mental illness and inability to self-care in this survey, which need to be expanded in future studies. Since all the recipients were from the same metropolitan area, whether they represented the whole Chinese LT population warrants further validation. It may be interesting to compare our results with similar studies conducted in other populations of LT recipients from different cultural and socioeconomical background. Finally, we haven't implemented any intervention to improve the self-management behavior in this patient population. Therefore, the benefit of the self-management program on the quality of life and long-term survival of the LT recipients is awaiting further investigations.

 

In conclusion, the overall self-management status of the LT recipients is less than satisfactory, while their self-efficacy is at the medium level. Marital status, educational level and employment are the major influencing factors affecting self-management behavior of the patients, while postoperative time and self-rated health status are variables affecting self-efficacy. Based on these findings, our transplant related healthcare personals are obligated to provide essential self-management support for those LT recipients, help them develop essential skills including problem-solving, decision-making, resource-utilization, patient-healthcare provider partnerships and taking-action. Socioeconomic factors like life context, stressful life events, cultural and religious aspects, psychological and emotional issues such as depression, hopelessness, demoralization, fears, anxiety, distress, etc, might greatly challenge a patient's self-management efforts and should be taken into account when implementing individual self-management interventions. We should also use all possible social forces to establish a standardized follow-up system for the transplant recipients, therefore help those living with an allograft to develop a healthier lifestyle and better coping skills, which hopefully will be translated to better quality of life and survival in these patients. 

 

 

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