Research On The Supportive Care Needs And Quality Of Life In China Patients With Acute Leukemia

Objective：The aim of this study was to investigate the supportive care needs and quality of life(QOL) of patients with acute leukemia(AL), to further examine the correlation betweensupportive care needs and QOL and to identify their influence factors. We observed thesupportive care needs and QOL in AL patients at different diagnostic times. Understandingthe supportive care needs and QOL of the AL patients will contribute to the improvementof AL patients’ QOL research and nursing quality.Methods：1. By convenient sampling, the311patients with AL in five hospitals in Xi’an wereinvestigated through a self-designed general status questionnaire, Supportve Care NeedsSurvey short-form(SCNS-SF34), Functional Assessment of Cancer Therapy-Leukemia(FACT-Leu).2. Newly diagnosed patients with AL from the prevalence survey will be traced from1st to6th month.3. The data was collected by Epidata3.0and analyzed by SPSS18.0. Statistical significance between multiple groups was performed using descriptive analysis, one-wayanalysis of variance (ANOVA), multiple stepwise regression analysis, Spearman rankcorrelation analysis.Results：1. The baseline data of supportive care needs and QOL of AL patients.(1) The current state supportive care needs of311AL patients①Among the5domains of supportive care needs, Health system and Informationdomain of unmet needs got the highest score47.72(43.18), followed by Psychologicaldomain35.00(32.50), then the Physical and Daily Living domain25.00(35.00), the PatientSupport and Care domain25.00(40.00), and the score of Sexuality was the lowest0.00(24.99).②“Being informed about your test results as soon as feasible”,“Being informed aboutthings you can do to help yourself to get well”,“Being informed about cancer which isunder control or diminishing”,“Being adequately informed about the benefits andside-effects of treatments before you choose to have them”,“Fears about the cancerspreading” were the highest-scoring five items.③The multiple stepwise regression analysis showed that the treatment stage, maritalstatus and KPS were the main factors influencing the Health system and Informationdomain; KPS, the income and treatment stage were the main factors influencing thePsychological domain and the Patient Support and Care domain; KPS and the incomewere the main factors influencing Physical and Daily Living domain; the age and whetherthe initial were the main factors influencing Sexuality domain.(2)The current state of QOL of311AL patients①The total score of QOL of AL patients was (112.39±24.31). Descending order ofeach dimension was the Social/Family Well-being(20.81±5.30), the Psysical Well-being(17.81±5.43), the Emotional Well-being(16.81±4.61), the Functional Well-being(13.27±5.59).②In the Leukemia Subscale,“Can not do tings they do”,“Fever”,“Infection”,“lossof appetite”,“Tired” were the lowest-scoring five items. ③The multiple stepwise regression analysis indicated five factors, KPS, the income,treatment stage and whether the patients had fever or infection, which entered into theregression equation of QOL.(3) The supportive care needs and the QOL (except the Social/Family Well-being) showednegative correlation (correlation coefficient:-0.123~-0.613), the Physical and DailyLiving domain and the Psychological domain moderately correlated to the overall QOL(r=-0.521, P＜0.01; r=-0.613, P＜0.01).2. The dynamic changes of supportive care needs and QOL of AL patients in1-6monthafter diagnosedThe initial diagnosis AL patients have50cases and no deaths were lost in the early3months. However,17cases were died and5cases were lost, only28cases could befollowed beteween4th and6th month. There didn’t exist significant difference betweenthe two groups demonstrated that28cases can represent50cases.(1) The supportive care needs domains except Sexuality domain showed an increasedtrend, the rest dimensions decreased. The Patient Support and Care domain slightlyrebounded in6th months. Furthermore, the Sexuality domain showed an increased trend inthe3rd months.The score of supportive care needs in AL patients between1st and2rdmonth or between3rd and6th month showed significant difference (p＜0.05) tested by theKruskal Wallis H nonparametric tests. But through the Mann-Whitney U test, only thePhysical and Daily Living domain and the Health System and Information domain weresignificant different between the3rd and6th months and the early2months afterdiagnosis(P＜0.008). The Psychological domain were significant different between the6thmonth and the early3months after diagnosis (p＜0.008). The Sexuality domain and thePatient Support and Care domain did not show significant difference (p>0.008). Thehighest level of item in1st,2nd,3rd and6th month was “Being informed about things youcan do to help yourself to get well”.(2) The overall QOL of AL patients increased gradually in1st,2nd,3rd,6th month.Theoverall QOL and other domains except the Social/Family Well-being domain and theEmotional Well–being differed significantly (p＜0.05) under LSD-t analysis. Additionally, Physical Well-being, Function Well-being and the overall QOL showed significantdifference (p＜0.05) between the early3months and the6th month.Conclusion：1. The data indicated that a range of unmet needs existed in AL patients and the unmetneeds in the Health system and Information domain was the highest, followed by thePsychological domain. The lowest domain was the Sexuality. Clinical care should focuson the AL patients with low KPS score, low income, remission, age≤44, the initial,married who had more needs. Dimensions of the supportive care needs in newlydiagnosed patients varied differently at each time point. Prospective longitudinaldimension of this survey showed that the Physical and Daily Living domain and theHealth system and Information domain decreased significantly in the3rd month, thePsychological domain decreased significantly in the6th month and the Sexuality needshad a rising trend in the3rd month.2. Total QOL of domestic AL patients, though Social/Family Well-being was better, wereworse than foreign AL patients, especially in the Function Well-being domain.“Can notdo things they do”,“Fever”,“Infection”,“loss of appetite” and “Tired” showed moreremarkable influence on the patients’ QOL. The influenced factors of the QOL included:Lower KPS score, lower income,remission, and had a fever or infection a week recently.The patients in the first3months were found with poor QOL under prospectivelongitudinal survey.3. The supportive care needs of AL patients was negatively correlated with total QOLindicating that the more unmet needs, the worse QOL of the patients. Especially whenneeds in the Physical and Daily Living domain and the Psychological domain cannot bemet, their QOL will be much worse. Overall, KPS, the income and treatment stage werethe influencing factors both for the supportive care needs and QOL of AL patients.