|Year : 2020 | Volume
| Issue : 3 | Page : 253-261
Changes in social support among patients with hematological malignancy undergoing hematopoietic stem cell transplantation in Souzhou, China
Yongchun Liang1, Mingming Zhou1, Wei Yu1, Haifang Wang2
1 School of Nursing, Taihu University of Wuxi, Wuxi, China
2 Department of Nursing, The First Affiliated Hospital of Soochow University, Suzhou, Jiangsu, China
|Date of Submission||09-Jul-2018|
|Date of Decision||28-Mar-2019|
|Date of Acceptance||31-Mar-2019|
|Date of Web Publication||05-Aug-2020|
Department of Nursing, The First Affiliated Hospital of Soochow University, Suzhou, Jiangsu
Source of Support: None, Conflict of Interest: None
Background: Evidence regarding social support in patients is mostly from cross-sectional studies. Very few studies have focused on the change in social support systems before and after hematopoietic stem cell transplantation.
Methods: A total of 191 patients were investigated before transplantation and at 30, 90 and 180 days post-transplantation. The social support for patients was evaluated by the Perceived Social Support Scale (PSSS).
Results: The overall PSSS scores showed a continuous decline in means from 71.29 ± 9.73 before the transplantation to 69.44 ± 10.61, 68.73 ± 10.04, and 66.37 ± 12.02 at 30, 90 and 180 days post-transplantation, respectively. In comparison to the baseline, the overall PSSS scores decreased significantly at 90 and 180 days post-transplantation (P < .05). The Generalized Estimated Equation (GEE) analysis found that patients with no transplant-related complications, higher household income, and better educational status had preferable social support.
Conclusion: Social support presented a marked downward trend during the six month period. Patients with no transplant-related complications, higher household income and better educational status had preferable social support. Therefore, social support as a high-priority quality of life should be given close attention in the early phase of transplantation. Positive measures should be taken to improve social support in the early phase of transplantation especially among individuals undergoing this procedure for the first time.
Keywords: Hematopoietic stem cell transplantation, nursing, social support
|How to cite this article:|
Liang Y, Zhou M, Yu W, Wang H. Changes in social support among patients with hematological malignancy undergoing hematopoietic stem cell transplantation in Souzhou, China. Indian J Cancer 2020;57:253-61
|How to cite this URL:|
Liang Y, Zhou M, Yu W, Wang H. Changes in social support among patients with hematological malignancy undergoing hematopoietic stem cell transplantation in Souzhou, China. Indian J Cancer [serial online] 2020 [cited 2021 Jul 29];57:253-61. Available from: https://www.indianjcancer.com/text.asp?2020/57/3/253/291411
Yongchun Liang and Mingming Zhou are contributed equally to this work.
| » Introduction|| |
Hematological malignancies (HM) include acute and chronic leukemia, lymphoma, multiple myeloma, and myelodysplastic syndromes. Hematopoietic Stem Cell Transplantation (HSCT) is a common modality of treating HM. Globally, more than 60,000 people receive HSCT yearly. The establishment of bone marrow bank and cord blood bank have greatly mitigated the shortage of donor stem cell sources, and radical cure has been achieved among many. The development of transplant technology brought remarkable improvements in reducing the mortality in patients with high-risk HM, and the long-term survival rate among disease free individuals is about 60%.
However, HSCT has deleterious toxic effects on patients' physical and mental health, which negatively affects patients' recovery. The major transplant-related complications include graft-versus-host disease (GVHD), mucositis, infectious diseases, urocystitis, neoplasm recurrence, and sexual dysfunction.,,,,, GVHD is one of the most common and serious complications among transplant patients. Despite strong immunosuppressive prophylaxis following allogeneic HSCT, clinically significant GVHD still occurs, with reported morbidity ranging from 9% to 50%. Due to the limited understanding of the mechanism of GVHD, it is difficult to establish the most effective prevention and treatment program. After several cycles of such toxic treatment, patients are likely to have the fear of death, which increases the psychological burden. At the same time, complications pose an additional economic pressure to patients, which affects their treatment compliance and treatment effect to a certain extent. From the perspective of nursing, nursing staff need to observe the patient's condition more closely and make the right and timely assessment of the patient's in terms of early identification of such complications. When complications occur, the nursing staff should comply to the doctors' advice and carry out their nursing duties, in order to improve the treatment effect. But it is difficult to reduce the incidence of complications through nursing measures. The side effects such as transplant-related complications are harder to supervise, therefore, it is necessary to identify factors that are highly relevant to nursing, such as social support. Social support is a broad construct that describes an individual's perceived network of social resources. Studies have proven that it is feasible and effective to intervene via social support., Favourable social support can help patients recover and improve their quality of life.
Nevertheless, researches addressing social support in patients are inclined to cross-sectional surveys.,, There are very few studies which have focused on the change in social support before and after transplantation. HSCT has an obvious stage specificity. The patient's social support level during each stage is subject to changes. HSCT patients are usually discharged about three months after transplantation, and the current knowledge regarding the changes in social support post-discharge is not well studied. Therefore, we investigated the social support of HSCT recipients in the early period of transplantation to determine the changing trend, and respond positively in the first instance.
To determine the changes, our study aimed at demonstrating the trajectory of social support before and after transplantation over a period of six months, and to determine the most vulnerable period in social support. A total of 191 patients were investigated before and 30 days, 90 days and 180 days after transplantation.
| » Methods|| |
A longitudinal quantitative study was conducted from July 22nd, 2016 to April 30th, 2017. The data included socio-demographic characteristics, clinical information, and social support which was collected by trained investigators. Participants were investigated 1-2 days before transplantation and at 30, 90, and 180 days post-transplantation.
The participants were HM patients who were undergoing an allogeneic/autologous bone marrow or peripheral blood stem cell transplant at a tertiary care hospital during the study period. The patients included were (a) Consenting adult patients (≥18 years old); (b) individuals of HM who were able to comprehend the information collected in this study. Patients with cognitive impairment/mental illness, graft failures, recurrent malignant tumors or those too ill to participate, were excluded. We calculated the sample size according to regression analysis, with 80% power, a sample size of 120 was required. 191 participants were investigated 1-2 days before transplantation and on days 30 (31.38 ± 4.60), 90 (91.10 ± 5.10), and 180 (180.41 ± 4.21) post-transplantation. 182, 162, and 138 participants completed the assessment at 30, 90, and 180 days post-transplantation, respectively [Figure 1].
Social support was measured by the Perceived Social Support Scale (PSSS) developed by Zimet et al. The PSSS comprised of 12 items on a scale from 1-7, with response options ranging from 1 (very strongly disagree) to 7 (very strongly agree). The 12-item PSSS measures perceived social support from three sources: Family, Friends and Significant Others (Cronbach's alpha = 0.87, 0.85, and 0.91 for the family, friends and significant others subscales, respectively). The total score ranges from 18-84, with higher scores corresponding to high social support. The PSSS is easy to understand and can be administered in a limited time; it has been used in varied populations and countries. The Chinese translation of the PSSS was used in this study. In this study, the PSSS had strong internal consistency in HSCT patients (Cronbach's alpha = 0.92, 0.94, 0.95 and 0.95 before HSCT, and on 30, 90, and 180 days post-transplantation, respectively).
Socio-demographic characteristics such asage, sex, marital status, the residence, educational status, household income and the primary caregivers (spouses, parents or someone else) were collected to understand the current situations in the study settings.
Clinical data such as diagnosis of acute / non-acute leukemia, allogeneic or autologous HSCT, platelet counts post-transplant, transplant related complications such as GVHD, severe infection, cystitis were recorded.
We obtained the above information from the patients, the patients' relatives, and the medical records.
This study was approved by the ethics committee (NO. 2017021), and all participants provided written, informed consent in accordance with the Declaration of Helsinki.
IBM SPSS Statistics 19.0 (Chicago, Illinois) was used to analyze the data. Mean ± SD was used to describe the continuous variables and count (percentage) was used to describe the categorical variables. In order to evaluate the changes between different time periods, repeated measurement Analysis of variance (ANOVA) was done. The Generalized Estimated Equation (GEE) method was used to determine the influencing factors for social support.
All statistical assessments were evaluated at the 0.05 alpha level, and the tests were 2-sided.
| » Results|| |
The dropout sample
The loss to follow-up rate was 53 (27.7%) at the end of six months post-transplantation. The reasons for attrition were death due to serious GVHD (18), deferring transplantation owing to serious complications during pretreatment (6), graft failures (3), recurrence of the malignancies (5), serious illness (5), voluntarily quit the study (12) and loss to follow-up (4) [Figure 1].
A total of 138 patients completed all the four measurements. The average age of these 138 patients was 33.31 ± 11.40 (range, 18 to 62). There were 82 (59.4%) males and 56 (40.6%) females. Ten (7.2%) cases received autologous transplantation and 128 (92.8%) cases received allogeneic transplantation [Table 1].
|Table 1: Characteristics of patients in the study at different points of the treatment process |
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Changes in PSSS scores over time
The overall PSSS scores showed a continuous decline in means from 71.29 ± 9.73 before the transplantation to 69.44 ± 10.61, 68.73 ± 10.04, and 66.37 ± 12.02 at 30, 90, and 180 days post-transplantation, respectively. The decrease from baseline was significant at 90 days (Standard Error (SE) = 0.78; P = 0.008), and 180 days (SE = 0.88; P<.001) post-transplant. The trajectory was similar in family, friends, and significant others support [Table 2].
|Table 2: The Perceived Social Support Scale (PSSS) and its dimensions, mean scores at four different points in time and tests of difference for patients responding before HSCT, at 30 days, 90 days and 180 days post-transplantation |
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Factors associated with social support
The GEE model for social support summarizing the associated factors is described in [Table 3]. Transplant-related complications (β = -4.276; P = 0.002), household income (β = 2.570; P = 0.008), and educational status (β = 1.961, P = 0.035) were associated with social support. While age (β =.134; P = 0.110), gender (β = 0.452; P = 0.749), marital status (β = -1.090; P = 0.610), residence (β = 0.571; P = 0.728), primary caretaker (β = -1.533; P = 0.363), disease diagnosis (β = 0.636; P = 0.650), stem cell source (β = -2.128; P = 0.521), and the platelet level (β = -0.037; P = 0.980) were found to have no significant association with social support [Table 3].
PSSS scores between patients with and without complications
Changes in PSSS scores over time of patients with or without complications
In the six month period, for patients with complications, the overall PSSS scores showed marked constant decline (F = 13.248, P<.001) in means 70.39 ± 8.97 before transplantation when compared to 68.02 ± 10.59, 66.88 ± 9.86, and 63.59 ± 12.03 at 30, 90 and 180 days post-transplantation, respectively. Compared to the baseline, the PSSS changed significantly at 180 days post-HSCT. For patients without complications, the overall PSSS scores showed a slight decline i.e 72.60 ± 10.68 before transplantation when compared to 71.51 ± 10.40, 71.40 ± 9.78, 70.40 ± 10.90 at 30, 90 and 180 days post-transplantation, respectively; but the changes were not statistically significant [Table 4] and [Figure 2].
|Table 4: The Perceived Social Support Scale (PSSS) scores of patients with and without complications at different points in time |
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|Figure 2: Changes of the Perceived Social Support Scale (PSSS) scores on patients with and without complications|
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Comparison between two groups at each point in time
There was no significant difference in the PSSS scores between HSCT patients with and without complications before HSCT (t = 1.311, P = 0.192) and at 30 days post-HSCT (t = 1.911, P = 0.058). But, the PSSS scores of patients without complications was significantly higher than those patients with complications at 90 days (t = 2.648, P =.009) and 180 days (t = 3.379, P =.001) post-HSCT [Table 4] and [Figure 2].
PSSS scores of patients with different household income
Changes in PSSS scores over time of patients with different household income
Patients reported a mean overall PSSS score of 67.85 ± 10.47 at baseline, 64.23 ± 11.03 at day 30, and 65.29 ± 9.34, 62.69 ± 10.63 at days 90 and 180 post-transplant for patients with less than 2001 Yuan/month household income which decreased significantly at 180 days post-transplant at 180 days post-HSCT. For patients with household income 2001-4000 Yuan/month, the overall PSSS scores showed a downward trend with means 70.66 ± 9.45, 69.83 ± 9.70, 68.10 ± 9.02, 64.27 ± 12.00 at the beginning, at 30,90,180 days post-transplantation, respectively. There was no significant change in PSSS scores among patients with more than 4000 Yuan/month household income [Table 5] and [Figure 3].
|Table 5: The Perceived Social Support Scale (PSSS) scores of patients with different household income levels at different points in time |
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|Figure 3: Changes of the Perceived Social Support Scale (PSSS) scores on patients with different household income levels before and after transplantation|
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Comparison of three groups at each point in time
Before HSCT, patients with household income of more than 4000 Yuan per month had higher PSSS scores than those with individuals of household income of less than 2000 Yuan/month (Mean Difference (MD) = 6.144; P = 0.004). At 30 days post-HSCT, patients with household income of more than 4000 Yuan/month had higher PSSS scores compared to household with < 2000 Yuan/month (MD = 7.984; P = 0.001), and patients with 2001-4000 Yuan/month household income had higher PSSS scores than those with less than 2001 Yuan/month household income (MD, 5.598; P =.016). At 90 days post-HSCT, the PSSS scores of patients with more than 4000 Yuan/month household income were higher than those with less than 2001 Yuan/month household income (MD = 6.133; P =.006). At 180 days post-HSCT, the PSSS scores of patients with household income of more than 4000 Yuan/month were higher than those with less than 2001 Yuan/month household month (MD, 7.973; P =.003) and those patients with household income betweeen 2001-4000 Yuan/month (MD, 6.393; P =.005) [Table 5] and [Figure 3].
PSSS scores of patients with different educational levels
Changes in PSSS scores over time of patients with different educational levels
The overall PSSS scores showed a continuous decline with means of 69.76 ± 10.88, 66.20 ± 11.87, 66.05 ± 11.00, 63.75 ± 10.67 before HSCT and 30, 90 and 180 days post-HSCT, respectively, for patients with educational level of junior high school or below (F = 8.556, P = 0.001), and compared to the baseline, it changed significantly 180 days post-HSCT. The overall PSSS scores showed a similar trends with means 69.12 ± 10.05, 68.61 ± 8.95, 66.76 ± 8.95, 63.06 ± 12.42 before HSCT and 30, 90 and 180 days post-HSCT, respectively, in patients with high school education (F = 5.487, P = 0.002), and with a change of -6.063 (SE 1.972; P = 0.024). The decline in PSSS scores of patients with the diploma and above was not found to be statistically significant (SE 1.346; P = 0.095) [Table 6] and [Figure 4].
|Table 6: The Perceived Social Support Scale (PSSS) scores of patients with different educational levels at different points in time |
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|Figure 4: Changes of the Perceived Social Support Scale (PSSS) scores of patients with different educational levels before and after transplantation|
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Comparison of three groups at each point in time
Prior to the commencement of HSCT, patients with the diploma and above education had higher PSSS scores than those with junior high school and below education, and high school education. At 30 days post-HSCT, patients with the diploma and above had significantly higher PSSS scores than those with junior high school and below education. At 90 and 180 days post-HSCT, patients with the diploma and above education had higher PSSS scores than those with high school and junior high school or below education [Table 6] and [Figure 4].
| » Discussion|| |
In the present study, we found that social support presented a marked downward trend post-transplant process. Before transplantation, the patients' social support was at a higher level, and this might be due to resources from family members, relatives, friends, and colleagues. Additionally, patients have high expectations before transplantation, they are usually positive and optimistic, which may have a positive impact on their perceived social support. However, post-transplantation, if the effect of treatment is far less than their expectations, there is a huge psychological gap where patients become anxious and depressed, which might negatively affect their perceived social support. Specifically, the recovery of HSCT patients usually takes quite a long time, where the patients experience prolonged symptoms, distress and social isolation, which may also hinder their motivation to seek social support.,
It needs to be emphasized that the average age of patients was (33.31 ± 11.40) years in this study, the vast majority of patients were younger and were in the upswing of their careers, and the occurrence of diseases brought detrimental effect to the patients' lives. In particular, given the “4-2-1” Chinese family structure, young couples not only have to support four parents but also raise at least one child. Illness puts patients under suffocating stress, leading to a sense of uncertainty about their future and an increase in anxiety and depression, which can prevent patients from proactively seeking social support. Therefore, the health practitioners should pay attention to the long-term social support of patients post-transplantation, by providing targeted social support in appropriate forms at different stages of transplantation.
For example, in the early time of transplantation, patients may need more emotional, information, and financial support, whereas in the latter stages post-transplantation, patients consider planning for future, including re-employment, marriage, childbirth, child-rearing and support for the elderly. At that stage, patients often need a variety of social support.
This study found that patients with transplant-related complications had a lower level of social support than those without complications (β = -4.276, P = 9.632), and their social support dramatically decreased post-HSCT (MD = -6.795; P <.001). Several studies have confirmed that complications due to physiological problems led to more serious anxiety, depression and other negative emotions.,, The complications reduced perceived social support because of the change in the support content of patients, and need of information related to medication and treatment from the medical staff since it is difficult for family or friends to provide this kind of support. Secondly, the anxiety and depression caused by complications affected their perception of social support to a certain extent, which in turn reduced their initiative to seek support.
In China, patients are usually discharged about 3 months post-transplant, and post-discharge, the patients are at higher risk of complications as the functions do not fully recover
. In this study, many patients came from rural areas, where local medical and health conditions are poor. So, when complications occur, patients lack the support from medical and health staff. Therefore, when the patient is discharged from the hospital, the health practitioners should inform the patient of the time of return visit and the precautions to be taken post-discharge. After the patient is discharged from the hospital, regular follow-up should be carried out regarding the patient's condition, problems in the rehabilitation process, and to provide professional help.
This study also found that patients with less education had lower social support than those with higher education. Generally, social support has two categories: objective support (including visible or practical support) and subjective support, which refers to the individual's perceptions of the respect, support, and understanding from society. Subjective support is closely related to the subjective feeling of the patients which is based on the cultural and behavioural patterns of the patient. It is difficult to capture data regarding the patient's behaviour, and hence, difficult to provide effective support to the patient. This suggests that health practitioners should provide social support based on the patients' social and cultural backgrounds. Patients with better education are able to acquire knowledge, but those with lower education are less likely to take advantage of existing social support and they lack the ability to actively seek support.
This study suggests that patients with higher household income are more likely to perceive higher social support. Individuals with higher economic status have greater advantages in social resources and social support through social relations or family. For patients with lower economic status, the available social resources are less, also the cost of treatment is expensive. The economy can also directly affect the therapeutic effect., For instance, patients with lower socio-economic status have a greater risk of poor treatment, but also bear more serious psychological burden, as many factors directly affect their perception of social support.
The health practitioners should pay more attention to patients of poor socio-economic status, teaching patients to actively use social support resources, such as “qing-song chou”, “ai-xin chou”, and other public welfare fundraising sites to obtain financial help. They should also pay attention to the inner thoughts of the low-income patients and reduce their psychological burden associated with the treatment. In clinical practice, patients who recover faster post-transplantation are keen to share their experiences in overcoming the disease with other patients, and many such patients are willing to help other patients financially.
This study illustrated the changes in social support of HSCT patients before and after transplant, suggesting that social support should receive more attention in the early phase of transplantation. Nevertheless, the weaknesses of our study must be acknowledged. The first shortcoming is that our study included only 138 patients in the analysis, we didn't include the social support of those patients who were loss to follow-up. The other limitations include evaluating the changes in patients' subjective support, and not the visible or practical support. Furthermore, this study only used quantitative methods to explain the results, which might result in inadequate explanation. Future research could employ a mixed approach to fully explain the results.
| » Conclusion|| |
This longitudinal study over 6 months evaluates the changes in social support on patients with HSCT. This study concludes that the social support presented a marked downward trend in the early phase of transplantation, and that transplant-related complications, low-income household, and poor educational level represented poorer social support. Social support has important effects on psychological and physical health. Positive measures should be taken to improve the social support and the health practitioners should provide personalized social support according to patients' conditions at different stages of transplantation.
The authors gratefully acknowledge the time and energy contributed by the participants. This study was funded by 2018 Natural science research project of Taihu University of Wuxi (18WUNS004).
We thank Sumanto Nugroho for his linguistic assistance during the preparation of this manuscript.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Figure 1], [Figure 2], [Figure 3], [Figure 4]
[Table 1], [Table 2], [Table 3], [Table 4], [Table 5], [Table 6]