This article was downloaded by: [George Washington University] On: 25 February 2015, At: 01:52 Publisher: Routledge Informa Ltd Registered in England and Wales Registered Number: 1072954 Registered office: Mortimer House, 37-41 Mortimer Street, London W1T 3JH, UK
AIDS Care: Psychological and Socio-medical Aspects of AIDS/HIV Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/caic20
HIV disclosure and its effect on treatment outcomes in perinatal HIV-infected Thai children a
a
a
Chompoonoot Sirikum , Jiratchaya Sophonphan , Thongsuai Chuanjaroen , Sudrak b
a
a
a
Lakonphon , Amornrat Srimuan , Patcharaporn Chusut , Tanya C. Do , Wasana a
ac
Prasitsuebsai , Thanyawee Puthanakit , Jintanat Ananworanich on behalf of HIV-NAT 015 study team
abd
a
, Torsak Bunupuradah &
a
The HIV Netherlands Australia Thailand Research Collaboration (HIV-NAT), The Thai Red Cross AIDS Research Center, Bangkok, Thailand b
Click for updates
SEARCH, The Thai Red Cross AIDS Research Center, Bangkok, Thailand
c
Department of Pediatrics, Faculty of Medicine, Chulalongkorn University, Bangkok, Thailand d
Department of Medicine, Faculty of Medicine, Chulalongkorn University, Bangkok, Thailand Published online: 13 Mar 2014.
To cite this article: Chompoonoot Sirikum, Jiratchaya Sophonphan, Thongsuai Chuanjaroen, Sudrak Lakonphon, Amornrat Srimuan, Patcharaporn Chusut, Tanya C. Do, Wasana Prasitsuebsai, Thanyawee Puthanakit, Jintanat Ananworanich, Torsak Bunupuradah & on behalf of HIV-NAT 015 study team (2014) HIV disclosure and its effect on treatment outcomes in perinatal HIV-infected Thai children, AIDS Care: Psychological and Socio-medical Aspects of AIDS/HIV, 26:9, 1144-1149, DOI: 10.1080/09540121.2014.894614 To link to this article: http://dx.doi.org/10.1080/09540121.2014.894614
PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http:// www.tandfonline.com/page/terms-and-conditions
AIDS Care, 2014 Vol. 26, No. 9, 1144–1149, http://dx.doi.org/10.1080/09540121.2014.894614
HIV disclosure and its effect on treatment outcomes in perinatal HIV-infected Thai children Chompoonoot Sirikuma, Jiratchaya Sophonphana, Thongsuai Chuanjaroena, Sudrak Lakonphonb, Amornrat Srimuana, Patcharaporn Chusuta, Tanya C. Doa, Wasana Prasitsuebsaia, Thanyawee Puthanakita,c, Jintanat Ananworanicha,b,d, and Torsak Bunupuradaha*; on behalf of HIV-NAT 015 study team† a The HIV Netherlands Australia Thailand Research Collaboration (HIV-NAT), The Thai Red Cross AIDS Research Center, Bangkok, Thailand; bSEARCH, The Thai Red Cross AIDS Research Center, Bangkok, Thailand; cDepartment of Pediatrics, Faculty of Medicine, Chulalongkorn University, Bangkok, Thailand; dDepartment of Medicine, Faculty of Medicine, Chulalongkorn University, Bangkok, Thailand
Downloaded by [George Washington University] at 01:52 25 February 2015
(Received 20 August 2013; accepted 11 February 2014) The World Health Organization guideline recommends informing children of their HIV status between the ages of 6–12 years. Primary caregivers of perinatal HIV-infected Thai children ≥6 years were interviewed in order to assess the HIV status disclosure rate. In addition, pill counts of antiretroviral therapy (ART) were performed every three months. CD4 and HIV-RNA were performed every six months. Of the 260 children/adolescents included, the median age of disclosure was 14.8 years. The disclosure rate among those from 6 to 12 years was 21% and for those greater than 12 years of age was 84%. When comparing children aged 6–12 years whose HIV status had been disclosed to them, to children whose HIV had yet to be disclosed, no difference was noted in median ART adherence by pill count, CD4 count, or proportion of HIV-RNA 0.05). Factors associated with HIV disclosure were an age of ≥12 years (OR 17.8, 95% CI 8.86–35.79) and a current CD4 ≤ 30% (OR 2.09, 95% CI 1.20–3.62). In conclusion, although the majority of adolescents ≥12 years were aware of their HIV status only one-fifth of children aged 6–12 years were aware. Moreover, the child’s/adolescent’s disclosure status had no bearing on ART adherence by pill count or immunological and virological outcomes. Keywords: HIV disclosure; treatment outcomes; HIV-infected children
Introduction Disclosing the HIV status to perinatal HIV-infected children/adolescents is the key first step toward them understanding the nature and significance associated with their disease. Once completed, practitioners can increasingly engage children/adolescents in self-care practices that will positively influence their future health and well-being. Understandably, HIV disclosure is one of the most difficult issues faced by families of HIVinfected children/adolescents due to concerns surrounding how the knowledge will affect the child’s emotional health. The WHO guideline on HIV disclosure recommends that children are informed of their HIV status at ages 6–12 years (World Health Organization, 2011). Abebe et al. reported only 16.3% of HIV-infected schoolage African children knew their diagnosis (Abebe & Teferra, 2012).
Several articles have discussed the impact of diagnosis disclosure among HIV-positive children/adolescents. HIV disclosure was associated with delayed HIV disease progression, defined as either death or CD4 decline, over a three-year period among Romanian children aged 5–17 years compared to undisclosed children (Ferris et al., 2007). Higher rate of care retention over three years after antiretroviral therapy (ART) initiation was found in HIV disclosed compared to undisclosed in West African children (Arrive et al., 2012). Butler et al. (2009) reported no differences in caregiver report of child quality of life between pre- and post-disclosure in American children. The limited knowledge of their HIV diagnosis was associated with poor ART adherence in Zambian children aged 9–15 years (Haberer et al., 2011). Little is known regarding the impact of disclosure on immunological and virological outcomes in HIV-infected
*Corresponding author. Email: [email protected] This study was presented at the 7th IAS Conference on HIV Pathogenesis, Treatment and Prevention, Malaysia 2013 (Poster number: WEPE524). † The HIV-NAT 015 Study Team: Dr Kiat Ruxrungtham, Dr Jintanat Ananworanich, Dr Chitsanu Pancharoen, Dr Thanyawee Puthanakit, Dr Torsak Bunupuradah, Dr Wasana Prasitsuebsai, Sasiwimol Ubolyam, Apicha Mahanontharit, Jintana Intasan, Tawan Hirunyanulux, Chayapa Phasomsap, Oratai Butterworth, Chulalak Sriheara, Chowalit Phadungphon, Wanchai Thongsee, Orathai Chaiya, Patcharaporn Chusut. © 2014 Taylor & Francis
AIDS Care
Downloaded by [George Washington University] at 01:52 25 February 2015
children (Krauss, Letteney, De Baets, Baggaley, & Okero, 2013). In addition, there are limited data regarding disclosure rates of perinatal HIV-infected children in Asia (Boon-Yasidhi et al., 2005; Butterworth et al., 2007; Oberdorfer et al., 2006). Previous reports have found that one-fifth of HIV-infected Thai children knew of their positive HIV status (Boon-Yasidhi et al., 2005; Butterworth et al., 2007). The purpose of this article is to report the rate of HIV disclosure that exists among Thai children/adolescents by interviewing their caregivers, as well as to determine if disclosure has an impact or correlation on ART adherence, or immunological and virological outcomes. Methods This study was a substudy in the HIV-NAT 015, pediatric prospective cohort study (Clinicaltrials.gov identification number NCT00476606) at the HIV Netherlands Australia Thailand Research Collaboration (HIV-NAT), the Thai Red Cross AIDS Research Centre, Bangkok (Bunupuradah et al., 2011). The caregivers of HIVinfected children/adolescents were interviewed about the HIV disclosure status of their children. The inclusion criteria comprised of perinatal HIV-infected Thai children/adolescents, aged greater than or equal to six years at their last visit during June–December 2012. The children/adolescents who acquired HIV through highrisk behaviors were excluded as they were informed of their diagnosis during the voluntary counseling and testing process. All children/adolescents received care and treatment according to the WHO 2006 guidelines (Sungkanuparph et al., 2008; World Health Organization, 2006). Children were assessed every 12 weeks for Centers for Disease Control and Prevention (CDC) clinical classification, weight, and height measurements. Complete blood count, CD4%, CD4 cell count, and plasma HIV-RNA (Roche Amplicor Ultrasensitive assay, Palo Alto and USA) were monitored every 24 weeks. Disclosure status assessment Disclosure was defined as the act of informing children of their HIV-positive status. An act of disclosure may be carried out by health-care workers, caregivers, or others (i.e., relatives and peers). Primary caregivers were defined as those mainly responsible for ensuring the child’s/adolescent’s ART adherence and the securing HIV health-care-related needs. Primary caregivers were interviewed by nurses at each visit in order to obtain updated demographic data and disclosure status. Data surrounding the disclosure event (i.e., the individual who informed the children) were also obtained. Private home residency was defined as living with parents’,
1145
grandparents’, or another relatives’ house. Orphanage residency was defined as a residential institution devoted to the care of children whose biological parents are deceased or otherwise unable or unwilling to care for the child/adolescent.
Adherence measurement Adherence counseling was performed by pediatricians and nurses according to standard practice. Pill counts were performed by nurses every 12 weeks. Percentage of adherence was calculated as [(dispensed drug – returned drug)/estimated drug that children should take in each period] × 100 (Kosalaraksa et al., 2013). Poor adherence was defined as adherence from pill count
AIDS Care: Psychological and Socio-medical Aspects of AIDS/HIV Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/caic20
HIV disclosure and its effect on treatment outcomes in perinatal HIV-infected Thai children a
a
a
Chompoonoot Sirikum , Jiratchaya Sophonphan , Thongsuai Chuanjaroen , Sudrak b
a
a
a
Lakonphon , Amornrat Srimuan , Patcharaporn Chusut , Tanya C. Do , Wasana a
ac
Prasitsuebsai , Thanyawee Puthanakit , Jintanat Ananworanich on behalf of HIV-NAT 015 study team
abd
a
, Torsak Bunupuradah &
a
The HIV Netherlands Australia Thailand Research Collaboration (HIV-NAT), The Thai Red Cross AIDS Research Center, Bangkok, Thailand b
Click for updates
SEARCH, The Thai Red Cross AIDS Research Center, Bangkok, Thailand
c
Department of Pediatrics, Faculty of Medicine, Chulalongkorn University, Bangkok, Thailand d
Department of Medicine, Faculty of Medicine, Chulalongkorn University, Bangkok, Thailand Published online: 13 Mar 2014.
To cite this article: Chompoonoot Sirikum, Jiratchaya Sophonphan, Thongsuai Chuanjaroen, Sudrak Lakonphon, Amornrat Srimuan, Patcharaporn Chusut, Tanya C. Do, Wasana Prasitsuebsai, Thanyawee Puthanakit, Jintanat Ananworanich, Torsak Bunupuradah & on behalf of HIV-NAT 015 study team (2014) HIV disclosure and its effect on treatment outcomes in perinatal HIV-infected Thai children, AIDS Care: Psychological and Socio-medical Aspects of AIDS/HIV, 26:9, 1144-1149, DOI: 10.1080/09540121.2014.894614 To link to this article: http://dx.doi.org/10.1080/09540121.2014.894614
PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http:// www.tandfonline.com/page/terms-and-conditions
AIDS Care, 2014 Vol. 26, No. 9, 1144–1149, http://dx.doi.org/10.1080/09540121.2014.894614
HIV disclosure and its effect on treatment outcomes in perinatal HIV-infected Thai children Chompoonoot Sirikuma, Jiratchaya Sophonphana, Thongsuai Chuanjaroena, Sudrak Lakonphonb, Amornrat Srimuana, Patcharaporn Chusuta, Tanya C. Doa, Wasana Prasitsuebsaia, Thanyawee Puthanakita,c, Jintanat Ananworanicha,b,d, and Torsak Bunupuradaha*; on behalf of HIV-NAT 015 study team† a The HIV Netherlands Australia Thailand Research Collaboration (HIV-NAT), The Thai Red Cross AIDS Research Center, Bangkok, Thailand; bSEARCH, The Thai Red Cross AIDS Research Center, Bangkok, Thailand; cDepartment of Pediatrics, Faculty of Medicine, Chulalongkorn University, Bangkok, Thailand; dDepartment of Medicine, Faculty of Medicine, Chulalongkorn University, Bangkok, Thailand
Downloaded by [George Washington University] at 01:52 25 February 2015
(Received 20 August 2013; accepted 11 February 2014) The World Health Organization guideline recommends informing children of their HIV status between the ages of 6–12 years. Primary caregivers of perinatal HIV-infected Thai children ≥6 years were interviewed in order to assess the HIV status disclosure rate. In addition, pill counts of antiretroviral therapy (ART) were performed every three months. CD4 and HIV-RNA were performed every six months. Of the 260 children/adolescents included, the median age of disclosure was 14.8 years. The disclosure rate among those from 6 to 12 years was 21% and for those greater than 12 years of age was 84%. When comparing children aged 6–12 years whose HIV status had been disclosed to them, to children whose HIV had yet to be disclosed, no difference was noted in median ART adherence by pill count, CD4 count, or proportion of HIV-RNA 0.05). Factors associated with HIV disclosure were an age of ≥12 years (OR 17.8, 95% CI 8.86–35.79) and a current CD4 ≤ 30% (OR 2.09, 95% CI 1.20–3.62). In conclusion, although the majority of adolescents ≥12 years were aware of their HIV status only one-fifth of children aged 6–12 years were aware. Moreover, the child’s/adolescent’s disclosure status had no bearing on ART adherence by pill count or immunological and virological outcomes. Keywords: HIV disclosure; treatment outcomes; HIV-infected children
Introduction Disclosing the HIV status to perinatal HIV-infected children/adolescents is the key first step toward them understanding the nature and significance associated with their disease. Once completed, practitioners can increasingly engage children/adolescents in self-care practices that will positively influence their future health and well-being. Understandably, HIV disclosure is one of the most difficult issues faced by families of HIVinfected children/adolescents due to concerns surrounding how the knowledge will affect the child’s emotional health. The WHO guideline on HIV disclosure recommends that children are informed of their HIV status at ages 6–12 years (World Health Organization, 2011). Abebe et al. reported only 16.3% of HIV-infected schoolage African children knew their diagnosis (Abebe & Teferra, 2012).
Several articles have discussed the impact of diagnosis disclosure among HIV-positive children/adolescents. HIV disclosure was associated with delayed HIV disease progression, defined as either death or CD4 decline, over a three-year period among Romanian children aged 5–17 years compared to undisclosed children (Ferris et al., 2007). Higher rate of care retention over three years after antiretroviral therapy (ART) initiation was found in HIV disclosed compared to undisclosed in West African children (Arrive et al., 2012). Butler et al. (2009) reported no differences in caregiver report of child quality of life between pre- and post-disclosure in American children. The limited knowledge of their HIV diagnosis was associated with poor ART adherence in Zambian children aged 9–15 years (Haberer et al., 2011). Little is known regarding the impact of disclosure on immunological and virological outcomes in HIV-infected
*Corresponding author. Email: [email protected] This study was presented at the 7th IAS Conference on HIV Pathogenesis, Treatment and Prevention, Malaysia 2013 (Poster number: WEPE524). † The HIV-NAT 015 Study Team: Dr Kiat Ruxrungtham, Dr Jintanat Ananworanich, Dr Chitsanu Pancharoen, Dr Thanyawee Puthanakit, Dr Torsak Bunupuradah, Dr Wasana Prasitsuebsai, Sasiwimol Ubolyam, Apicha Mahanontharit, Jintana Intasan, Tawan Hirunyanulux, Chayapa Phasomsap, Oratai Butterworth, Chulalak Sriheara, Chowalit Phadungphon, Wanchai Thongsee, Orathai Chaiya, Patcharaporn Chusut. © 2014 Taylor & Francis
AIDS Care
Downloaded by [George Washington University] at 01:52 25 February 2015
children (Krauss, Letteney, De Baets, Baggaley, & Okero, 2013). In addition, there are limited data regarding disclosure rates of perinatal HIV-infected children in Asia (Boon-Yasidhi et al., 2005; Butterworth et al., 2007; Oberdorfer et al., 2006). Previous reports have found that one-fifth of HIV-infected Thai children knew of their positive HIV status (Boon-Yasidhi et al., 2005; Butterworth et al., 2007). The purpose of this article is to report the rate of HIV disclosure that exists among Thai children/adolescents by interviewing their caregivers, as well as to determine if disclosure has an impact or correlation on ART adherence, or immunological and virological outcomes. Methods This study was a substudy in the HIV-NAT 015, pediatric prospective cohort study (Clinicaltrials.gov identification number NCT00476606) at the HIV Netherlands Australia Thailand Research Collaboration (HIV-NAT), the Thai Red Cross AIDS Research Centre, Bangkok (Bunupuradah et al., 2011). The caregivers of HIVinfected children/adolescents were interviewed about the HIV disclosure status of their children. The inclusion criteria comprised of perinatal HIV-infected Thai children/adolescents, aged greater than or equal to six years at their last visit during June–December 2012. The children/adolescents who acquired HIV through highrisk behaviors were excluded as they were informed of their diagnosis during the voluntary counseling and testing process. All children/adolescents received care and treatment according to the WHO 2006 guidelines (Sungkanuparph et al., 2008; World Health Organization, 2006). Children were assessed every 12 weeks for Centers for Disease Control and Prevention (CDC) clinical classification, weight, and height measurements. Complete blood count, CD4%, CD4 cell count, and plasma HIV-RNA (Roche Amplicor Ultrasensitive assay, Palo Alto and USA) were monitored every 24 weeks. Disclosure status assessment Disclosure was defined as the act of informing children of their HIV-positive status. An act of disclosure may be carried out by health-care workers, caregivers, or others (i.e., relatives and peers). Primary caregivers were defined as those mainly responsible for ensuring the child’s/adolescent’s ART adherence and the securing HIV health-care-related needs. Primary caregivers were interviewed by nurses at each visit in order to obtain updated demographic data and disclosure status. Data surrounding the disclosure event (i.e., the individual who informed the children) were also obtained. Private home residency was defined as living with parents’,
1145
grandparents’, or another relatives’ house. Orphanage residency was defined as a residential institution devoted to the care of children whose biological parents are deceased or otherwise unable or unwilling to care for the child/adolescent.
Adherence measurement Adherence counseling was performed by pediatricians and nurses according to standard practice. Pill counts were performed by nurses every 12 weeks. Percentage of adherence was calculated as [(dispensed drug – returned drug)/estimated drug that children should take in each period] × 100 (Kosalaraksa et al., 2013). Poor adherence was defined as adherence from pill count
