| Objective:This study conducted a questionnaire survey on anxiety,depression status and health related quality of life of 128 male hemophiliacs in Gansu Province,to explore mental health status and health related quality of life of juveniles and adults hemophiliacs in Gansu Province and their impact factors to provide references for improving mental health status and health related quality of life of hemophiliacs in Gansu Province.Methods:The patients’ information in the Gansu National Hemophilia Case Information Management Center was retrospectively analyzed.A total of 425 questionnaires were distributed to hemophiliacs in Gansu Province through telephone,WeChat,outpatient follow-up and other contact methods,a total of 200 questionnaires were recovered,eliminated invalid questionnaires,128 were screened out that met the inclusion and exclusion criteria,including 74 adult male hemophiliacs and 54 juvenile male hemophiliacs.Their general information such as age,marriage,annual family income,education level,occupation,medical insurance,type of diagnosis,degree of disease,bleeding status,joint condition,treatment methods,and drug supply were collected.Using Questionnaires such as the 36-item short form health survey(SF36),self-rating anxiety scale(SAS),self-rating depression scale(SDS)to understand health related quality of life and mental health of adult hemophiliacs,using inventory of subjective life quality(ISLQ)to understand health related quality of life of juveniles hemophiliacs.Grouped the general data of the patients and compared the differences in the quality of life and mental health of the patients in different groups,and further explored the influencing factors of mental health status and health related quality of life of hemophiliacs in Gansu Province.Results:1.General information of juvenile hemophiliacsOf the juvenile male patients included,all(100%)had hemophilia A,aged 5-17 years.Mean age and median age of them were both 11 years.2.Quality of life of juvenile hemophiliacs2.1 Health related quality of life score of juvenile hemophiliacs was 60.00± 15.00.Among the 54 subjects,15(27.7%)reached a relatively satisfactory level,26(48.9%)were at an average level,13(23.4%)were not satisfied,and none people to a very high level of satisfaction.In terms of emotional components,17(32.6%)were relatively satisfied,29(53.2%)were at an average level,and 8(15.2%)were not very satisfied.In terms of cognitive components,13(23.4%)thought they were relatively satisfied,30(55.3%)thought they were at an average level,9(17.0)thought they were not very satisfied,and 2(4.3%)thought they were very dissatisfied.There were no patients reaching the extremely satisfactory level.2.2 The scores of health related quality of life(64.98±15.75),cognitive components(65.10±16.85),school life(6.09±1.93),and self-knowledge(6.37±1.55)of juveniles patients aged ≤15 years were higher than those of patients aged>15 years(46.28±11.81,44.09±11.57,4.54±0.92,4.39±0.87),the scores of depressive experience(6.36± 1.21)and somatic emotion(6.40± 1.25)in patients without family history were higher than those in patients with family history(5.49± 1.75,5.38 ± 1.65),the somatic emotion scores of patients with annual family income<30,000 yuan(6.20±1.21)were higher than those of patients with annual family income of ≥30,000 yuan(5.77±1.78),and the above differences were statistically significant(P<0.05).2.3 The score of quality of life(59.80± 13.20)of patients with first hemorrhage in infancy and early was lower than that of non-infant patients(60.33± 18.02).The depressive experience(5.76± 1.54)and somatic emotion(5.73± 1.59)scores of patients with spontaneous bleeding were lower than those of patients with injury bleeding(6.84±1.02,6.94±0.44),and the health related quality of life scores(56.43±13.44),cognitive component(56.94± 13.79),affective component(56.82± 14.70),selfcognition(5.74±1.45),school life(5.72±1.39),peer interaction(5.77±1.43),depressive experience(5.65± 1.48),body emotion(5.79± 1.50)and family life(5.72± 1.38)of patients with joint pain were lower than those of patients without joint pain(73.95± 12.84,71.95± 14.03,72.46±8.43,7.03± 1.28,7.10± 1.45,6.92± 1.46,7.36±0.45,6.84± 1.21,7.07± 1.52),the differences were statistically significant(P<0.05).The depressive experience(5.49±1.75)and somatic emotion(5.38±1.65)scores of patients with j oint disability were lower than those of patients without j oint disability(6.36±1.21,6.40±1.25),and the above differences were statistically significant(P<0.05).3.Factors affecting health related quality of life of juvenile patientMultiple linear regression analysis found that joint pain free was an independent influencing factor of quality of life(P=0.019,B=6.853,95%CI=1.196,12.509),emotional component(P=0.001,B=9.642,95%CI=4.389,P=0.001,B=9.642,95%CI=4.389,14.895)in juvenile patients.Age>15 years old(P=0.007,B=-15.555,95%CI=4.389,14.895)was an independent risk factor of cognitive components in juvenile patients.4.General information of adult patientsAmong the 74 adult male patients,70(94.6%)had hemophilia A and 4(5.4%)had hemophilia B,aged 18-54 years,their mean age was 32.6 years,median age was 30.5 years.5.Depression,anxiety and health related quality of life in adult patients5.1 Of the 74 adult patients included,the mean depression score was 53.0 ± 13.82,40(54.1%)had no depressive symptoms,17(23.0%)may have mild depression,11(14.9%)have moderate depression,six(8.1%)were likely to have severe depression.The mean anxiety score was 47.95± 11.07 points,48(64.9%)had no anxiety symptoms,16(21.6%)have mild anxiety,6(8.1%)have moderate anxiety,and 4(5.4%)have severe anxiety.5.2 The mean scores of quality of life of adult patients was 43.31 ± 16.11,the score of total physical health was 34.44± 18.39,the score of total mental health was 52.17± 18.39,the score of physical function was 47.77±27.91,role physical was 15.20±30.36,role emotional was 33.33±41.66,bodily pain was 42.86±23.44,mental health was 53.57±20.01,vitality was 50.68±25.67,social function was 71.12±26.33,and general health was 31.93± 18.55.5.3 The depression and anxiety scores of adult hemophilia patients with middle school(52.70±13.56,47.67±10.70),college and above educational level(46.28±11.78,43.03±9.94)were lower than those of primary school educational level and below(63.31 ± 11.77,55.62± 10.24),the score of health related quality of life(43.97 ± 16.18,48.99 ± 14.25),total physical health(34.75 ± 17.76,41.14 ± 18.63),total mental health(53.20 ± 19.39,56.83 ± 15.95)were higher than the latter(30.54 ± 12.86,20.72± 12.07,40.37± 15.90),the above differences were statistically significant(P<0.05).5.4 The depression and anxiety scores of unemployed adults with hemophilia(58.30± 15.36,53.04± 11.19)were higher than those of freelance,private or individual(43.56±9.44,39.00±6.95)and students(48.53± 10.76,43.89±9.29),The scores of depression and anxiety of farmers(57.08± 12.75,50.3 8± 9.01)were higher than those of freelance,private or individual group patients(43.56±9.44,39.00±6.95),and the above differences were statistically significant(P<0.05).5.5 The depression and anxiety scores(57.18±15.28,50.53±11.88)of adult hemophilia patients with annual family income of ≤30,000 yuan were higher than those of 30,000-50,000 yuan(50.71±10.90,46.96±9.78)and>50,000 yuan(41.13 ±4.88,39.13±5.99),the score of total mental health(47.57 ± 20.38)was lower than that of the latter two groups(54.27 ± 13.81,66.71 ± 14.87),and the scores of health related quality of life and total physical health of patients with annual family income>50,000 yuan(62.07 ± 10.57,57.44 ± 18.91)was higher than patients with annual family income ≤30,000 yuan(39.51 ± 16.35,31.45±16.30)and 30,00050,000 yuan(43.10±13.50,31.93±16.80),and the above differences were statistically significant(P<0.05).5.6 The depression score of patients with j oint disability(54.50± 14.44)was higher than the patients without joint disability(46.57±8.483),and the total physical health score was lower than the latter(29.00± 13.32,57.77± 19.28).The score of total physical health of patients whose bleeding frequency was±4 times/month(37.64±18.87)was higher than that of patients whose bleeding frequency was>4 times/month(20.73±5.82),and the above differences were statistically significant(P<0.05).5.7 The score of quality of life(37.58± 13.09)and total physical health(26.01 ± 12.14)of patients with frequent joint pain were lower than those of patients with almost no joint pain(60.12± 16.04,49.15± 17.55),and the above differences were statistically significant(P<0.05).6.Factors influencing mental health and health related quality of life in adult patients6.1 Multiple linear regression analysis found that primary school educational level and below(B=11.044,P=0.006,95%CI=3.220,18.867),annual family income>50,000 yuan(B=-11.139,P=0.023,95%CI=-20.727,-1.552)were independent influencing factors of depression score in adult hemophiliacs.Primary school educational level and below(B=7.289,P=0.025,95%CI=0.921,13.656),unemployed status(B=6.632,P=0.011,95%CI=1.598,11.665)were independent risk factors of anxiety score.6.2 Multiple linear regression analysis found that frequent joint pain(B=-7.896,P=0.017,95%CI=-14.528,-1.443)was an independent risk factor of the score of health related quality of life of adult patients.Joint disability(B=20.540,P=0.000,95%CI=11.164,29.917),frequent joint pain(B=-7.817,P=0.024,95%CI=-14.596,1.038),annual family income>50000 yuan(B=14.548,P=0.007,95%CI=4.064,25.032)were independent influencing factors of the patient’s score of total physical health.Primary school educational level and below(B=-12.782,P=0.025,95%CI=-23.930,1.635)was an independent risk factor affecting the score of total mental health of adult patients.Conclusion:1.The health related quality of life of juvenile male hemophiliacs in Gansu Province is at an average level.Health related quality of life is poor in patients with younger age of first bleeding,spontaneous bleeding,joint pain,joint disability,ondemand treatment,having a family history and older age.Joint pain status and age significantly affect patients’ health related quality of life.2.Adult male hemophiliacs in Gansu Province have high incidence of depression and anxiety,and low scores of health related quality of life.Educational level,occupation,annual family income,joint pain and joint disability significantly affect the mental health and health related quality of life of patients. |
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