Development And Application Of The Thyroid Cancer Self-perceived Discrimination Scale

Objectives:1.To discusses the manifestations and sources of self-perceived discrimination in Chinese patients with thyroid cancer based on the constructing grounded theory.2.The Thyroid Cancer Self-Perceived Discrimination Scale was developed,and its reliability,validity and acceptability were validated,which was to provide a scientific evaluation tool for the measurement of self-perceived discrimination in patients with thyroid cancer.3.EORTC QLQ-C30 was used as the criterion of TCSPDS,and the quality of life of patients with thyroid cancer was measured at the same time.The correlation between the patients’ self-perceived discrimination and the quality of life was analyzed,and the possible influencing factors of the self-perceived discrimination were analyzed,which was to provide a basis for preventing and alleviating the self-perceived discrimination of patients with thyroid cancer and improving their quality of life.Methods:1.Qualitative research:Following the principle of "information saturation",the convenient sampling method was used to select thyroid cancer patients who visited Yunnan Cancer Hospital Head and Neck Surgery Department from March to May 2022 as the interviewees for in-depth semi-structured interviews.Based on the constructing grounded theory,two researchers applied NVivo 12 Plus software to conduct independent coding analysis on the interview data within 24 hours after the interview,and the third researcher ruled when disagreements occurred.2.Scale development:Review the literature related to cancer self-perceived discrimination,and establish an item pool by combining qualitative research,literature review and Chinese grammar.Delphi expert consultation method was adopted to invite relevant experts to conduct two rounds of evaluation on items.Invite patients to conduct cognitive interviews on the content and meaning of each item.Finally,the preliminary TCSPDS was formed.3.Scale validation:A questionnaire:Basic Information Form of Patients,Cancer SelfPerceived Discrimination Scale(CSPDS),Thyroid Cancer Self-Perceived Discrimination Specificity Scale(TCSPDS)and The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire(EORTC QLQ-C30)was established,and patients with thyroid cancer were invited to conduct a questionnaire survey.Based on classical measurement theory,item analysis and content validity index(I-CVI)were used to test the content validity of TCSPDS.Exploratory factor analysis(EFA),confirmatory factor analysis(CFA)and structural equation model(SEM)were used to test the construct validity of TCSPDS.Pearson correlation coefficient method was used to analyze the validity coefficient between TCSPDS and EORTC QLQ-C30 to test the criterion-related validity(CRV)of TCSPDS scale.The internal consistency coefficient(Cronbach’s alpha coefficient),split half reliability(Spearman-Brown coefficient)and test-retest reliability were used to verify the reliability of TCSPDS.The questionnaire completion time and effective response rate were used to validate the acceptability of the scale.4.Scale application:EORTC QLQ-C30 as the calibration standard for TCSPDS to test whether the TCSPDS scale could be clinically applied.One-way analysis of variance was used to analyze the difference of TCSPDS scores among patients with different characteristics.Multivariate stepwise regression was used to analyze the influencing factors of TCSPDS.Pearson correlation coefficient was used to analyze the correlation between patients’ TCSPDS scores and QOL.Results:1.Qualitative research:According to the qualitative analysis,the three themes of stigma,self-deprecation and social avoidance were extracted from the self-perceived discrimination of 35 thyroid cancer patients.The stigma included cancer fear,wound and voice changes,irritable temper and medication labels.Self-deprecation included dysfunction,disfigurement and financial burden.Social avoidance included disease concealment,communication disorder and refusal of care.2.Scale development:A scale item pool with 14 items was developed by qualitative research and literature review,which included three dimensions of stigma,selfdeprecation and social avoidance.In the first round of expert consultation,item 13 "Sometimes I don’t feel like a normal person anymore" was deleted,believing that this item did not have specificity for thyroid cancer.Item 14 "Some people believe that thyroid cancer can be contagious"was deleted,believing that this item was not related to thyroid cancer.Item 3,"Some people believe that thyroid cancer is a genetic disease",was revised to "Some people believe that thyroid cancer is inherited".Item 11,"I hate seeing myself in the mirror",was revised to "Sometimes I feel distressed about my neck wound".Item 13,"Sometimes I feel responsible for my thyroid cancer",was revised to "Sometimes I feel very guilty about my thyroid cancer".In the second round of expert consultation,the ICVIs of the remaining 12 items were all greater than 0.80,which indicated that there was no need to revise or delete the remaining items again.After cognitive interviews with 10 patients with thyroid cancer,all patients expressed that they could understand and accept the contents and meanings of each item,so there was no revision of the item content was needed.Finally,the preliminary TCSPDS was formed.3.Scale validation:The I-CVIs of all 12 items in the preliminary TCSPDS were greater than 0.80.Each item was strongly correlated with the total scale(Pearson correlation coefficients ranged from 0.343 to 0.722,P<0.01).Each item was strongly correlated with each subscale(Pearson correlation coefficients ranged from 0.472 to 0.874,P<0.01).TCSPDS was strongly correlated with CSPDS(Pearson correlation coefficient was 0.963,P<0.01).These results proved that TCSPDS has good content validity.By exploratory factor analysis(EFA),it was found that the KMO value of TCSPDS was 0.802,and the Bartlett’s test was 695.088(P<0.001),indicating that it was suitable for factor analysis.A total of 3 common factors with feature root>1 were extracted by principal component analysis(PCA).The cumulative variance contribution rate was 56.525%,and the load of each item in the dimension was≥0.40.Therefore,the three common factors were named stigma,self-deprecation and social avoidance respectively.According to the theoretical model constructed by EFA,confirmatory factor analysis(CFA)on the distribution of each item of the scale showed that TCSPDS had good construct validity(χ2/df=1.971,RMSEA=0.074,GFI=0.921,CFI=0.930,IFI=0.932,TLI=0.901).The validity coefficient of TCSPDS and EORTC QLQ-C30 was 0.767(P<0.01),which indicated that TCSPDS had good criterion-related validity.Cronbach’s alpha coefficient of TCSPDS was 0.867,Spearman-Brown coefficient was 0.828,and intra-group correlation coefficient(ICC)was 0.981,which indicated that TCSPDS had good internal reliability and retest reliability.The average completion time of TCSPDS was 15.01±1.348 minutes,and the effective response rate was 95.14%,which indicated that TCSPDS had good acceptability.(The detailed TCSPDS scale can be found in Attachment 1.)4.Scale application:By comparing the TCSPDS scores of thyroid cancer patients with different characteristics,it was found that there were statistically significant differences in the scores of gender,age,residence area,monthly family income,medical insurance payment method,economic burden,education level,tumor stage,course of disease and operation method(P<0.05).TCSPDS scores were used as dependent variables,and the above 10 statistically significant variables were used as independent variables.Through multiple stepwise regression analysis,the results showed that gender,economic burden,disease duration and operation method were independent influencing factors of patients’ TCSPDS scores(P<0.05).The scores of TCSPDS were positively correlated with the scores of QOL and were positively correlated with the scores of global health,5 functional domains and 7 symptom domains(fatigue,pain,dyspnea,insomnia,appetite loss,constipation and financial difficulties)(P<0.05).Conclusions:1.Our study shows that the TCSPDS is effective and reliable in assessing selfperceived discrimination in thyroid cancer patients and can be used as a basis for clinical staff to carry out health education,psychological counseling and social support in the future.2.The self-perceived discrimination of patients with thyroid cancer will have a negative impact on their quality of life,gender,economic burden,course of disease and surgical method are independent risk factors of self-perceived discrimination in patients with thyroid cancer.Prevention and alleviation of self-perceived discrimination can improve patients’ QOL.