Development Of The Perceived Symptom Manageability Scale And Its Impact On Quality Of Life Among People Living With HIV From A Multidimensional Perspective Of Symptom Experience

Objective:To explore the symptom experience and understanding of"perceived symptom manageability"among people living with HIV(PLWH)in China and to develop a validated quantitative assessment tool to capture the trajectory of symptom experience,the multidimensional symptom distribution,and understanding of perceived symptom manageability in the real world.Additionally,our study aims to provide an overall picture of the quality of life in people living with HIV and to identify the factors that may ultimately influence the quality of life of this population based on modern statistical methods.Finally,the study also aims to clarify the correlation and paths between each variable and quality of life,so as to further expand the applicability of the Self-regulatory HIV/AIDS Symptom Management Model(SSMM-HIV)model among PLWH in China.Methods:Mixed Research MethodsPart 1 A qualitative study of symptom experience and symptom manageability among people living with HIVwe used this phenomenological research method in this stage.Preparations were conducted rigorously,such as literature review,research team formation,selection of study sites and subjects,and establishment of interview outline interview outlines.Standardized sampling was used.Additionally,face-to-face semi-structured interviews were conducted in selected hospitals,taking into account the adequacy and understanding of the information obtained.At the same time,the focus group interviews were conducted with nursing staff who provide caregiving behaviors to PLWH in hospitals to get more abundant data.Colaizzi’s analysis method was adopted during the data analysis phase.Part 2 Development and evaluation of the Perceived Symptom Manageability Scale among people living with HIVBased on the International Psychometric COSMIN Inventory guidelines,the theoretical model of perceived symptom manageability,literature review,and previous qualitative studies,the first version of the 36-item Perceived Symptom Manageability Scale(PSM-HIV)was formed after two rounds of group discussion.Two rounds of content validity analysis were carried out by expert consultation method,and content validity index CVI was used to evaluate.20 respondents who met the criteria were conveniently selected to conduct a face-to-face structured interview to assess the face validity.According to their opinions,we further modified or deleted some items.We investigated 170 PLWH,and item analysis and exploratory factor analysis were conducted to revise further and refine the scale.Then another 340 PLWH were investigated to complete confirmatory factor analysis.The PSM-HIV scale was evaluated by internal consistency,retest reliability and measurement error test.Part 3 Analysis of quality of life in a multidimensional perspective of symptom experience among people living with HIVA cross-sectional study was conducted in nine regions.In each area,we conveniently selected one to two major designated HIV medical institutions and assigned full-time medical staff as the field investigators in this study.A convenience sampling method was used to select more than 70 subjects to participate in this survey in each region.The general demographic information,Self-Reported Symptom Scale(SRSS),the Chinese version of Medical Outcomes Study Social Support Survey(MOS-SSS-C),Self-Efficacy for Managing Chronic Disease 6-Item Scale(SEMCD-6),and the World Health Organization Quality of Life Questionnaire for HIV brief version(WHOQOL-HIV BREF)were applied for data collection.Then statistical analysis and path analysis were conducted by SPSS20.0、AMOS 27.0、R(3.3.3)and Free Statistics 1.7.P<0.05 was set to indicate statistically significant differences.Results:Part 1 A qualitative study of symptom experience and symptom manageability among people living with HIVNine themes were formed based on the perspective of the PLWH and nurses.Each theme contained a different number of sub-themes,as follows:ThemeⅠ-distress arising from the recurrence and persistence of symptoms;ThemeⅡ-multiple sources of distress with the same symptom;ThemeⅢ-anxiety about symptom progression and dynamic evolution;ThemeⅣ-a crash after multiple symptoms interacting in parallel;ThemeⅤ-the battle between self-perception and clinical objective indicators;ThemeⅥ-the struggle between depletion and survival;ThemeⅦ-perceptions of self-worth:(1)self-awareness and self-regulation;(2)symptom-related self-coping;ThemeⅧ-perception of the value of social support systems:(1)growth under social care;(2)hope aroused by medical care;(3)the contradiction between resources supply and demand;ThemeⅨ-the perception of value in interpersonal interaction systems:(1)motivation from love and being loved;(2)satisfaction from reflection on oppositional events;(3)demonstration of successful examples;(4)burden caused by disease culture.Part 2 Development and evaluation of the Perceived Symptom Manageability Scale(PSM-HIV)among people living with HIVAfter two rounds of expert consultation,the initial item pool containing 36 items was deleted and modified to form a scale containing 34 items.The I-CVIs value range was0.857～1.00,the S-CVIs value was 0.987,and the content coverage rate reached 90%.Then five items were modified again in the process of surface validity evaluation.Next,CR values of each item in the project analysis were significant,but the absolute values of correlation coefficients of four items in the item-total correlation analysis were less than0.400 and P<0.05.These items were deleted one by one until the remaining item 6 met the criteria and was temporarily retained.After that,the DI values of all the remaining 31items met the standard and the Cronbach’sαcoefficient was 0.962.After 14 rounds of exploratory factor analysis,14 items were deleted one by one.The remaining scale containing 17 items showed relatively ideal factor validity:KMO value was 0.905>0.9,Bartlett sphericity test results(X~2=1701.240;df=136,P<0.01),then a three-factor model was established.After three rounds of confirmatory factor analysis,two items were deleted again,and a 15-item scale was finally formed with better model fit(X~2/df=2.496,GFI=0.917,AGFI=0.904,RMSEA=0.063,RMR=0.031,NFI=0.932,IFI=0.0958,CFI=0.958).Additionally,convergent validity and results of difference between-group validity were good.The Cronbach’sαcoefficient was 0.924,with a total ICC value of 0.877(0.757～0.940).The standard error of measurement for each dimension of this scale and the full scale was 2.590～3.837,and thus this scale was judged to be reliable.Part 3 Analysis of quality of life in a multidimensional perspective of symptom experience among people living with HIV1.Analysis of multidimensional distribution and differences in symptomsOf the 711 PLWH,69.34%reported with symptoms,8.86%reported only one symptom in the last two weeks,with a mean number of symptoms was 5.367.The top 5 symptoms were sleep disturbance(37.98%),fatigue(35.16%),memory loss(33.90%),hair loss(26.58%)and slow react(25.04%).The differences were statistically significant in terms of duration of HIV infection,ART treatment,stage of disease,and comorbidities between the symptomatic and asymptomatic group(P<0.001).45.96%of 198 female PLWH reported one or more symptoms in the past two weeks and vaginal discharge occurred most frequently(30.81%).There were significant differences in symptom domains among the duration of HIV infection,stage of disease,and groups with or without complications(P<0.01).There were statistically significant differences between the comparisons of different domains in the same symptom cluster and between the comparisons of different symptom clusters in the same domain(P<0.001).The mean scores for physical symptoms were lower(0.39±0.49,0.29±0.41,0.47±0.63)compared to the mean scores of the other two symptom clusters.2.Screening and analysis of influencing factors of quality of lifeThe factors,including living alone,stage of disease,comorbidity,symptom experience,PSM-HIV,self-efficacy,and social support,were critical variables for the quality of life of PLWH.The four continuous variables showed a non-linear relationship and the influence trend on quality of life changed at different inflection points.In addition,in-depth analyses were conducted in different subgroups according to gender,age,race,education,family income,and region.The results of each subgroup analysis showed that the associations between these variables and quality of life were not statistical significance between subgroups,revealing that the overall results were very robust and consistent.The correlation matrix between the continuous variables and each domain of quality of life showed that there was a correlation.Finally,our results showed that the quality of life in the asymptomatic group was higher than in other groups.Besides the social domain,the scores of the other five domains in different stages of disease revealed statistical significance.In the analysis of six domains of quality of life in different living environments,we found that the differences in quality of life in the psychological domain,independence domain,and environmental domain were statistically significant(P=0.013,0.033,0.001).Those living alone clearly had a better quality of life.In addition,the quality of life of those without comorbidities was significantly better than those with comorbidities,showing consistent and stable results in both overall quality of life and the six domains.3.The path analysis between quality of life and influencing factorsThe initial path was established,which described the causal mechanism among variables,including symptom experience,PSM-HIV,self-efficacy,and social support as core variables on the quality of life among PLWH.After several rounds of model fitting and modification,the final path based on the Self-regulatory HIV/AIDS Symptom Management Model was formed,which took social support and symptom experience as initiating factors,and PSM-HIV or self-efficacy as mediators in the quality of life.All the model fit indexes reached the criteria(X~2/df=2.633,GFI=0.996,AGFI=0.937,CFI=0.996,RMSEA=0.081).Conclusion:1.The symptoms of PLWH are characterized by complexity,interaction,dynamics,and multi-origin,and patients’perception and interpretation of symptoms are different.At the same time,the symptom representation and coping strategies among the PLWH are intertwined with individual characteristics,life experiences,and cultural backgrounds.The beliefs and attitudes of PLWH towards symptom management have been interpreted and elaborated in different ways.The concept of"perceived symptom manageability"has also been uniquely described and portrayed,which has energized future clinical practice research on HIV-related symptom management.2.The PSM-HIV scale has good reliability and feasibility.The development of the PSM-HIV scale will help healthcare providers and social work practitioners understand the meaning and problems of symptom management from the perspective of the inner mechanisms of PLWH.It also provides unlimited possibilities for exploring broader strategies for symptom management among PLWH in the future.3.Our study describes the overall picture of PLWH’s symptom experience in China more entirely and the distribution pattern of multidimensional characteristics of PLWH.Furthermore,this study shows how the influencing factors to affect the quality of life of PLWH,as well as the paths and occurrence mechanism among these factors,which projects the original theoretical model established based on evidence into the real-world situation to verify.The results present the positive effects of social support,perceived symptom manageability,and self-efficacy on quality of life in PLWH and the adverse effects of symptom experience.Our study also clarifies the differences between perceived symptom manageability and self-efficacy.