A Study On Burden In Patients With Hematologic Malignancies And Their Caregivers

Objective：This study was to investigate the burdens of patients’ with Hematologicmalignancies and their caregivers, and analyze the influencing factors and therelationship between the Self-perceived Burden and the care burden, so as to provideevidence for making intervention measures about burden for patients with hematologicmalignancies and their caregivers. The ultimate aim is reducing the feeling of burden andincreasing their quality of life.Methods：1. By convenient sampling, the200inpatients with hematologic malignancies wereinvestigated with a self-designed general status questionnaire, the Self-perceived burden（SPBS），the Functional Assessment of Cancer Therapy（FACT-G、FACT-Leu、FACT-Lym）, Eastern Cooperative Oncology Group-Performance Status Rating （ECOG-PSR）, Hospital Anxietyand DepressionScale（HADS） and Social SupportRating Scale（SSRS）.2. The caregivers were investigated with a self-designed general status questionnaire andZarit Burden Interview（ZBI）at the same time with the investigation of inpatients; thecaregivers which were in the mourning period were investigated with a self-designedgeneral status, Self-rating Depression Scale（SDS）, University of California Los AngelesLoneliness Scale（UCLA）and Family APGAR Index.3. The data base was established and the data were entered by Epidata3.1.The data wasanalyzed by SPSS17.0software, the statistical methods were used such as descriptionanalysis, One-way analysis, and the multiple stepwise regression analysis and so on.Results：1. The Self-perceived Burden of Hematologic malignancies inpatients（1）The incidence rate of the self-perceived burdenwith Hematologic malignancies was93%,the mean score of Self-perceived burden was30.12±7.99, which reflected amoderate level of bueden.The economic burden and emotional burden are moreprominent.The differences of SPB scores were statistically significant with the followingfive variables: age, educational level, the family income per month, the status of working,and the sorts of medical fee.（2）The scores of the inpatients’anxietyand depression was10.30±7.60, the incidencerate of the anxiety was21.5%, the incidence rate of the depression was18.0%,and theincidence rate of the anxiety and depression was13.5%. The degree of anxiety anddepression was negatively related to the patients’ self-perceived burden.The severer thedegree of anxiety and depression is, the higher the self-perceived burden will be. Thedegree of anxiety and depression can increase the patient’s self-perceived burden.（3）The scores of the inpatients’ social support with hematologic malignancies was42.77±6.77, significantly higher than the national norm34.56±3.73.The social supportwas negatively related to the patients’ self-perceived burden. The higher level the socialsupport is, the lower the self-perceived burden will be.（4）The patients’ performance status were restricted to a certain degree, the score of performance status affect patients’ self-perceived burden. The patients who had higherscore of performance status would have higher self-perceived burden.（5）The meanscore of the inpatients’quality of life with hematologic malignancies was71.75±15.47.The score of social/family status was the highest; the score of functionalstatus was the lowest. The patients’ self-perceived burden was negatively correlated tothe total score of quality of life and its three dimensions（psychological status, physicalstatus and functional status）besides the social/family status.The patients with leukemiaand lymphoma were investigated with FACT-Leu and FACT-Lym, we found in thespecific items of leukemia, the incidence rate of can not do something as usual was thehighest, and the incidence rate of the plans for the future have difficulties was thehighest in the specific items of lymphoma.2. The primary caregivers’ burden（1）The mean score of the care burden was30.79±15.13, among them, mild careburden accounted for29%, moderate care burden accounted for43%, severe burden ofcare accounted for28%. The status of working and the change of the caregivers’ healthaffect the caregivers’ burden. Besides, whether the patients had blood transfusion in therecently week and the patients’ performance status also affect the caregivers’burden.Theresult of the correlation analysis was that the care burden was positively correlated withself-perceived burden; the status of working and whether the caregivers have disease canaffect the self-perceived burden of the patients.（2）The incidence rate of the depression of the bereaved was55.6%, the status ofworking affects the level of depression.The incidence rate of loneliness was66.7%, thewoman feel highly loneliness than man. The55.6%of the bereaved’ family function iscompromised; the partnership and the affection were affected significantly.Conclusion：1. The patients with Hematologic malignancies felt they were burden to others. Thisfeeling was related with the patients’ mood（anxiety and depression）, the status of socialsupport, performance status.The higher self-perceived burden can not only reduce thequality of life of the patients but also increase the caregivers’burden. 2. The caregivers have severe burden, the care burden will affect patients’ self-perceivedburden and affect the patients and their caregivers’qualityof life.3. The psychological status of the caregivers who was in the mourning period is notoptimistic, their family function and psychological status were affected in varyingdegrees.