A Study On The Consistency Of Community Elderly Patients With Chronic Diseases And Their Family Members’ Cognition,Attitude And Engagement Of Advance Care Planning

Objectives1.To translate the Advance Care Planning Engagement Survey-Surrogate Decision-Maker(ACPES-SDM)and test the reliability and validity;2.To revise the Family Advance Care Planning Questionnaire and test its reliability and validity;3.To investigate the consistency of cognition,attitude and engagement of ACP among elderly chronic disease patients and their family members in 4 communities under the jurisdiction of a community health service center in Zhengzhou city,Henan Province;To explore and analyze the factors affecting the consistency level of ACP practice among elderly patients with chronic diseases and their family members in community.Methods This study consists of three parts.1.To translate the ACPES-SDM and test the reliability and validity.Contact the original author of the questionnaire by email,and obtained the authorization of the survey,and form the Chinese version of the survey through translation,cultural adjustment and pre-investigation.A total of 415 family members of elderly patients with chronic diseases in community were selected as the test subjects.The reliability of the questionnaire was tested by Cronbach’s α coefficient and retest reliability;Scale-level Content Validity Index(S-CVI)and Item-level Content Validity Index(I-CVI)were adopted for content validity;Exploratory factor analysis and confirmatory factor analysis were used to analyze the structural validity of the questionnaire.2.Revision of the Family Advance Care Planning Questionnaire.According to the "Advance Care Planning Questionnaire",the preliminary items of the questionnaire were formed by referring to the existing related questionnaires and studies.The structure and items of the questionnaire were verified and revised through expert consultation,pre-investigation and reliability and validity test,and the test draft of the Family Advance Care Planning Questionnaire was formed.A total of216 family members of elderly patients with chronic diseases in community were selected to evaluate the structure validity,content validity,Cronbach’s α coefficient,half-fold reliability and retest reliability of the questionnaire.3.A mixed study of community elderly patients with chronic diseases and their family members’ cognition,attitude and engagement consistency on advance care planning.The interpretative sequential mixed study was adopted,and for the quantitative stage the convenience sampling method was adopted to select 312 elderly patients with chronic diseases and their family members who met the inclusion and exclusion criteria in 4 communities under the jurisdiction of a community health service center in Zhengzhou city,Henan Province as the research objects to conduct a questionnaire survey.And patient assessment tools included Advance Care Planning Questionnaire,Advance Care Planning Engagement Survey;family member assessment tools included Family Advance Care Planning Questionnaire,Advance Care Planning Engagement Survey-Surrogate Decision-Maker.SPSS21.0 was used for data analysis.For the qualitative study phase: Using the phenomenological research method,11 elderly patients with chronic diseases and their family members in the community were selected to conduct semi-structured interviews on the reasons for their different consistency in the process of participating in ACP.The data were analyzed by Colaizzi 7-step analysis method,and the subjects were independently coded,classified and refined.Results1.The item-level content validity index of the Chinese version of the questionnaire was 0.830~1.000,and the scale-level content validity index of the questionnaire was 0.970.Exploratory factor analysis revealed four factors,which accounted for 83.906% of the cumulative variance contribution rate.Confirmatory factor analysis showed that the model fitted well(x2/df=2.307、RMSEA=0.078、GFI=0.880、CFI=0.949、NFI=0.913、TLI=0.937、IFI=0.949).The total Cronbach’sα coefficient of the scale was 0.925,and the subscale Cronbach’s α coefficient ranged from 0.706 to 0.940.The test-retest reliability of the scale was 0.944,and the subscale test-retest reliability ranged from 0.778 to 0.948.2.The correlation coefficients of the Family Advance Care Planning Questionnaire between each item and the total score were 0.420~0.845(P<0.01).Four factors were extracted by exploratory factor analysis,and the cumulative variance contribution rate was 72.713%.The total Cronbach’s α coefficient of the questionnaire was 0.901,the Cronbach’s α coefficient of each dimension was0.752~0.968,the test-retest reliability was 0.913 after 2 weeks,and the test-retest reliability of each dimension was 0.721~0.935.The split-half reliability of the questionnaire was 0.766,and the split-half reliability of each dimension was0.723~0.969.3.For the quantitative phase: The consistency of cognition of ACP between elderly patients with chronic diseases and their family members in the community results showed that Kappa values ranged from 0.191 to 0.449.The consistency of community elderly patients with chronic diseases and their family members’ attitudes toward ACP: 70.51% of them thought it was meaningful to engagement in ACP discussions,and 66.03% of patients and their family members were willing to engagement in ACP discussions in the future.The Kappa values of their attitudes towards ACP were 0.431 and 0.417.The consistency of patients’ and their family members’ attitudes towards ACP was that the ICC= 0.153~0.611;In terms of the attitude of discussing medical measures,1.28%~47.12% of them were willing to discuss relevant medical measures,and the consistency analysis results showed that the Kappa value was 0.172~0.439.The consistency of ACP engagement degree of elderly patients with chronic disease and their family members in community was ICC=0.109~0.390;The consistency analysis of behavior change stage of elderly patients with chronic disease and their family members in community showed that Kappa value was 0.137.For the qualitative phase: the reasons why elderly patients with chronic diseases in community and their family members had different degrees of consistency in the process of participating in ACP included 4 theme and 11 sub-themes:(1)individual factors(physical health status,perception of disease information,individual coping style);(2)factors within the family(type of patient-family relationship,quality of family relationship,family communication);(3)clinical decision-making mode(family collective participation in decision-making,authoritative status of doctors,lack of respect for individual autonomy);(4)traditional cultural background(filial piety culture,avoidance of death topics and emotional protection).Conclusions1.The Chinese version of the ACPES-SDM has good reliability and validity,which can be used to measure the ACP engagement of the family members of elderly patients with chronic diseases in community.2.The revised Family Advance Care Planning Questionnaire has good reliability and validity,which can be used to measure the cognition and attitude of ACP of family members of elderly patients with chronic diseases in community.3.The cognitive consistency of community elderly patients with chronic diseases and their family members to ACP was at a medium and low level.They had a consistent and positive attitude towards ACP.They had low consistency in ACP engagement.On this basis,medical staff should timely identify the characteristics of ACP needs of patients and their family members and explore precise education support strategies.On this basis,emphasis should be placed on family factors,roles,tasks and effects of family members should be clarified,and ACP implementation methods adapted to China’s cultural background and clinical decision-making model should be explored.