Development Of A Quality Of Life Measure Specific For Chinese People Living With HIV/AIDS And Assessment Of Quality Of Life Of These People

BackgroundsEffective treatments such as highly active antiretroviral therapy(HAART) have prolonged the life span and reduced opportunistic infections for many HIV-infected individuals. As a result, the quality of life(QOL) and social well-being of patients with HIV/AIDS(Acquired immune deficiency syndrome) has become a major concern of both patients and health services providers.The people living with HIV/AIDS(PLWHA) have suffered from serious stress and depression. These factors have contributed to the deterioration of QOL of the patients and impact their treatment and rehabilitation, sometimes even led to hostile mentality to outside and anti-social behaviors.While there are currently many measures for assessing QOL of the PLWHA, the majority of these measures have been developed in developed countries. As a result, it is unclear as to how applicable the translations of such measures might be for the majority of HIV sufferers that live in China with vastly different cultures and incomparable health resources. Therefore, it is necessary to develop a QOL mesaure which is specific for Chinese PLWHA and this measure has the dimension assessing the hostile mentality trend. The development of a quality of life measure specific for Chinese people living with HIV/AIDS1 The formation of the measure1.1 The formation of question databaseThe contents of question database mainly came from the following three sources: First source was the relevant measures and literatures from China and other countries, second source was the contents of in-depth interviews with the PLWHA, and the third was the contents of in-depth interviews with some experts and health workers.1.2 The formation of the item pool and primary measureAfter adjustment, the contents in question database were transformed to item pool. The items asking patients about their feeling in the recent four weeks. A five-point scale was designed to score the items. Nearly all items used the same set of Likert-style frequency descriptors("all of the time","a lot of time","some of the time","a little of the time","none of the time"). The highest possible score of each item was 5 and the lowest was 1. The primary measure including 64 items. Three items out of them were used to reflect the effect and side-effect of the anti-virus medicine(only used for the patients who were receiving HAART) and were saved to the final measure directly.1.3 The application of the primary measure and the formation of the final measureThis study was undertaken in Sichuan, Hubei, Guizhou and Jiangxi provinces. 443 eligible PLWHAs participated the study. The participatants were older than 18 years old and intellectual intact. They were all outpatients. Informed consents were obtained before the survey. For those who had received the education of junior high school, the questionnaires were self-administered. Otherwise, the questionnaires were administered through face-to-face interviews. Each participant was given some money to compensate for their cost of participation. The mean age of the participants was 35.9 years(ranging from 18 to 67 years, standard deviation is 8.53 year), 65.9% of the patiens were male. These participants belonged to 12 nationalities, 91.1% of them came from the Han nationality. Mean length from the first time of being tested as HIV positive was 25.4 months. The generic QOL measure SF-36 was also be applied in 344 patients out of the 443 participants.1.3.1 The dimension-identification and item-removal processesFirstly, the response rate of all items were calculated. Response rates of three items which reflected the sexuality and sex life was lower than 90.0%. In the course of interviewing with patients, we also found they avoided questions which involving sex.These three items were removed. Distributions of all items' response were assessed, no item had≥70% of the sample choosing the same extreme response option.Next, all remaining items were placed into principal components analysis(varimax rotation). 12 items that loaded <0.50 on any factor were removed. For each newly identified factor, an internal consistency reliability coefficient(Cronbach'sα) was computed. Cronbach'sαvalue of factor 11 was only 0.46, two items in this factor were removed. Coefficients then were recomputed with items removed serially. Two items of facotr 7 and factor 8 were removed, because when the two items were removed, the Cronbach'sαincreased. The same conditions happened on one item of factor 4, but after discussing the significance of this item with experts, it was saved. Spearman correlation analysis was done in all items. Two items within factor 5 with a correlation coefficient value >0.80 were identified, one item of them was removed.1.3.2 Contents of the final measureAfter the process of item reduction, 41 items were remained. Factor analysis was done to structure the dimension. There were nine factors formed(eigen value≥1.0), explained 64.74% of the total variance. Another item which reflecting the satisfection of their life loading <0.40 on every factor formed a single dimension. In additional of 3 items reflecting the effect and side effect of anti-virus medicine, there were ten dimensions and one facet being formed. The ten dimensions and one facet included Mentality and energy, ME; Health and responsibility worries, HRW; Support of family and society, SFS; Hostility mentality trend, HMT; Physical function and vitality, PFV; Appetite and pain, AP; Financial worries, FW; Opinion on the health worker, OHW; Perception of stigma, PS; Life satisfaction, LS; Effect and side-effect of anti-virus medicine, ESM. So the meaure Quality of life for the Chinese HIV-infected(QOL-CHIV)including 44 items. Score of each item ranged from 1 ot 5, higher score reflecting a better QOL. The dimension score was the sum of its items' scores and could be changed into 0～100 scale.2 Psychometric properties of the QOL-CHIV2.1 Score distribution of all dimensionsNo dimension displayed obvious floor and ceiling effect. The patients got the following scores of the ten dimensions: 42.96±22.29, 34.62±19.81, 52.41±27.69, 70.52±21.63, 40.48±21.56, 61.59±20.66, 28.75±23.36, 65.61±27.89, 50.96±27.49, 46.75±25.78(mean+standard deviation), respectively. Scores of the three items which reflecting the effect and side effect of anti-virus medicine were displayed:42.93±31.76, 73.36±24.11, 52.35±26.58, respectively.2.2 Internal consistency reliability and test-retest reliability40 participants were sampled to repeat the questionnaire survey two weeks after the first round of survey. The test-retest reliability was assessed with intra-class correlation coefficients(ICC), of the ten dimensions the ICC ranging from 0.58 to 0.80. The first 9 dimensions weren't one-item dimension, their Cronbach'sαcoefficients ranged from 0.70 to 0.91. For the whole measure, the ICC reached 0.80 and the Cronbach' sαcoefficient reached 0.90.2.3 Validity of this measureThe result of factor analysis showed that there were nine factors formed(eigen value≥1.0), explained 64.74% of the total variance. Multitrait/Multiitem correlation analysis gave the result that the scaling success rates of all dimension were 100%. Pearson correlation coefficients between items with their dimension ranged from 0.57 to 0.96(not single-item dimension).Contents of this measure came from foreign measure specific for PLWHA and interviews with PLWHA, experts and health worker, the content validity should be acceptable. Taking the SF-36 as criterion, spearman correlation coefficient between the sum score of the two measures was 0.70. Dimensions in the two measures which reflecting the similar content had spearman correlation coefficients exceeding 0.6.Assessment of QOL of the PLWHA with QOL-CHIV1 Overall analysis of the score of QOL-CHIVThere were three dimensions had the mean score exceeding 60. Althrough mean and median of the score of hostility mentality trend dimension exceeding 70, there were still 41 times of patients getting lowest score on three items of this dimension. Score of the opinion on the health worker was relative high, indicating the approval to the health worker from the PLWHA. Particpants in this study were out-patients, HIV may not aggrieve their body severely, which could explain the result that mean score of the dimension appetite and pain exceeding 60. Mean scores of the patients were relatively low in the following dimensions: health and responsibility worries, financial worries, which was agree with the contents of interviews with the PLWHA. There were three items used to reflect the effect and side effect of the anti-virus medicine. two of the three items reflecting the side-effect and the impact on patients' life got relatively low scores, mean and median of the scores didn't reach 60. Another item which reflecting the effect got higher score, mean score was 73.4 and median was 75. The distribution of these socres were also agreed with the contents of inerviews.2 Single-factor analysis and multivariate analysisFirstly single-factor analysis was done. The scores of four dimensions showed significant difference between the different sex, female had the higher score than male. The participatants were divided into<30 years old, 30-40 years old, and 40-year-old group. There were noticeable difference in five dimensions between the groups,≤30 age group showed poorest quality of life and 40-year-old group showed the best. Infected patients could be divided into three groups according to their marital status: unmarried, in marriage, divorced or widowed. There were significant difference in seven dimensions and the in marriage group got the hignest score. Patients were divided into three groups according to the status of work: unemployed or farming, short-term or occasional work, long-term and stable work. QOL was inconsistent in seven dimensions, usually were the first group showed the worst QOL and the third showed the best. According to the first serum-positive time the patients were divided into two groups:≤one year and >one year. In the dimension of hostility mentality trend and physical function and vitality,≤one year group showed better QOL. But in the dimension of perception of stigma, >one year group showed better QOL. Patients with different infecting ways scored differently in seven dimensions, receiving blood group and saling blood group showed better QOL. If there were another PLWHA in family, the patient got higher scores in four dimensions. The patiens who were receiving HAART service showed better QOL in five dimensions. Patients with completely free treatment had better QOL in six dimensions. Patients in different provinces got inconsistent scores, QOL of patients from Guizhou was relatively poor and from Hubei and Jiangxi was relatively good. Majority patients in this study had poor educational backgrounds, so they did not showed different QOL according to different educatoional level.Results of multiple linear regression analysis formed ten regression equations respective to the tern dimensions. There were two factor had the most times to be included in the equation: the way of paying for treatment and working status. Length of being infected, where they came from and gender also be included in several equations. Other factors such as age, receiving HAART service, educational level, marital status, having another infected patient in family and way of being infected also be included in one or two regerssion equation.Assessment the QOL of the patients with SF-36SF-36 was applied in 344 HIV-infected persons in four provinces. The mean age of the participants was 34.6years(ranging from 18 to 67 years, standard deviation was 8.3 years). These patients came from 12 nationalities, most was the Han nationality. Substantial flooring effects were observed for the two role-limited doamins(50.5% for"role limitations due to physical health problems" and 62.2% for"role limitations due to emotional problems"). A satisfactory internal consistency of the SF-36 has been demonstrated in our study, with Cronbach'sαexceeding 0.74. Test-retest correlation coefficients ranged from 0.54 to 0.80("Physical functioning" to"vitality")for the eight dimensions and less than 0.7 for three dimensions. The scaling success rate were 100% for all dimensions. Factor analysis showed that there were 7 factor and explain 65.3% of total variance. The item-factor distribution of the factor analysis was not very coincident with the SF-36.The PLWHA experienced poorer QOL in all of the eight dimensions of SF-36 compared to the general populations. Rusults of single-factor analysis and multivariate analysis made the familiar conclusions of QOL-CHIV. QOL-CHIV showed stronger specificity than SF-36 and could distingusih more patients with different characteristics.ConclusionsQOL-CHIV is a reliable and valid measure specific for Chinese PLWHA. It is easy to administer and acquire well compliance. This measure could capture the special properties of Chinese PLWHA. It is the first time for the important and concerned dimension"hostility mentality trend" being included to QOL measure. QOL-CHIV could be applied in the PLWHA alone, and also could be applied with other generic measure. This measure could be used in the way of self-administration, face to face interview and phone interview. The participants of this study were not randomly selected, QOL-CHIV measure will be further verified and adjusted to make it perfect.Although it may not be able to capture some unique aspects of QOL associated with HIV infection, the SF-36 has its merit in assessing QOL of PLWHA. Through using SF-36 we can compare the QOL of PLWHA with other people which has different characteristics.