Shared medical appointments and quality of life for children with HIV-AIDS
Abstract
Background The human immunodeficiency virus (HIV) infects immune cells and weakens the immune system. There are 36.9 million HIV sufferers worldwide, with 1.8 million of them being children. Children with HIV and their parents may benefit from focus group discussions, also known as shared medical appointments (SMAs). SMAs represent an educational method capable of enhancing the quality of healthcare services. However, this method remains relatively under-researched in HIV/AIDS patients.
Objective To assess the impact of SMA on the quality of life of children with HIV-AIDS.
Methods This quasi-experimental study with a cross-sectional approach was carried out for 2 months. Subjects participated in SMAs, accompanied by a pediatrician as facilitator. Subjects filled three Pediatric Quality of Life (PedsQL) questionnaires (Inventory 4.0, General Well-Being Scale 3.0, and Healthcare Satisfaction 3.0), before and after attending SMAs. We compared the results.
Results There were 12 respondents, with the majority aged 5-10 years (50%), and a higher proportion of male than female (33.3%). The majority of boys had stage 3 HIV, while most girls had stage 2 HIV. According to the PedsQL Inventory module, the average quality of life for the physical aspect was the highest (83), while the lowest was observed in the school aspect (45). In the General Well-being module, the average emotional health scores were 84 before and 93 after SMAs, which were higher than the overall health scores (68 and 77 before and after SMAs, respectively). In the Healthcare Satisfaction module, the lowest average scores were in family satisfaction (52 before and 64 after SMAs), whereas the highest were in satisfaction with healthcare provider treatment (87 and 81 before and after SMAs, respectively). There was a significant increase before and after the SMAs in emotional health (P=0.009).
Conclusion An improvement in emotional health was observed based on the General Well-being module of the PedsQL before and after SMAs intervention. Thus, SMAs may potentially improve the quality of life for children with HIV-AIDS.
References
2. Centers for Disease Control and Prevention. CDC: HIV in the United States. Statistics Overview, Statistics Center HIV/AIDS. HIV in the United States: At A Glance; 2014 [cited 2019 January 7]; Available from: https://www.cdc.gov/hiv/statistics/overview/index.html.
3. Rivera D. 2019. Pediatric HIV Infection. [cited 2019 January 2]. Available from: http://emedicine.medscape.com/article/965086-overview#a0101.
4. World Health Organization (WHO). 2018. HIV data and statistics [cited 2019 January 7]. Available from: https://www.who.int/teams/global-hiv-hepatitis-and-stis-programmes/hiv/strategic-information/hiv-data-and-statistics.
5. Ditjen PP & PL Kemenkes RI. Laporan Perkembangan HIV-AIDS dan Infeksi Menular Seksual (IMS) Triwulan IV Tahun 2017. Jakarta: Kemenkes RI; 2018.
6. Dinkes Kota Bandar Lampung. Layanan Komprehensif Berkesinambungan. Dinkes Kota Bandar Lampung. Bandar Lampung: Dinkes Bandar Lampung; 2016.
7. Dinkes Provinsi Lampung. Profil Kesehatan Provinsi Lampung. Lampung: Dinkes Provinsi Lampung; 2016.
8. Latif F. Efek samping obat terhadap kepatuhan pengobatan antiretroviral orang dengan HIV/AIDS. [Thesis]. Universitas Hasanuddin: Makassar; 2014.
9. Kementerian Kesehatan Republik Indonesia. Tata laksana klinis infeksi HIV dan terapi antiretroviral pada orang dewasa. Jakarta: Depkes RI; 2011.
10. UNAIDS. 2018. Global HIV statistics. [cited 2019 January 10]. Available from: https://www.unaids.org/sites/default/files/media_asset/unaids-data-2018_en.pdf
11. Kementerian Kesehatan Republik Indonesia, WHO. 2017. HIV Epidemiology Review Indonesia 2016. [cited 2019 January 10]. Available from: https://siha.kemkes.go.id/portal/files_upload/HIV_EPIDEMIOLOGY_REVIEW_INDONESIA_2016.pdf.
12. Khumsaen N, Aoup-Por W, Thammachak P. Factors influencing quality of life among people living with HIV (PLWH) in Suphanburi Province, Thailand. J Assoc Nurses AIDS Care. 2012;23:63-72. DOI: https://doi.org/ 10.1016/j.jana.2011.01.003
13. Rijswijk C, Zantinge E, Seesing F, Raats I, van Dulmen S. Shared and individual medical appointments for children and adolescents with type 1 diabetes; differences in topics discussed?. Patient Education and Counselling. 2010;79:351-5. DOI: https://doi.org/ 10.1016/j.pec.2010.04.016
14. Egger G, Binns A, Cole MA, Ewald D, Davies L, Meldrum H, et al. Shared medical appointment: an adjunct for chronic disease management in Australia?. Aust Fam Physic. 2014;43:151-4. PMID: 24600680
15. Mejino A, Noordman J, van Dulmen A. Shared medical appointments for children and adolescents with type 1 diabetes: perspectives and experiences of patients, parents, and health care providers. Adoles Health Med Therapeut 2012;3:75-83. DOI: https://doi.org/ 10.2147/AHMT.S32417
16. Muhaimin T, Utomo B, Utoyo DB, Kurniati N, Anugrahini T, Utami F, et al. Instrumen pengukuran kualitas hidup anak terinfeksi HIV. KesMas J Kesehatan Masyarakat Nasional. 2011;6:126-32. DOI: https://doi.org/10.21109/kesmas.v6i3.103
17. Banerjee T, Pensi T, Banerjee D. HRQoL in HIV-infected children using PedsQLTM 4.0 and comparison with uninfected children. Qual Life Res. 2010; 19: 803-812. DOI: https://doi.org/ 10.1007/s11136-010-9643-3
18. Huang IC, Thompson LA, Chi YY, Knapp CA, Revicki DA, Seid M, et al. The linkage between pediatric quality of life and health conditions: establishing clinically meaningful cutoff scores for the PedsQL. ISPOR. 2009; 13: 773-81. DOI: https://doi.org/ 10.1111/j.1524-4733.2008.00487.x
19. Bomba M, Nacinovich R, Oggiano S, Cassani M, Baushi L, Bertulli C, et al. Poor health-related quality of life and abnormal psychosocial adjustment in Italian children with perinatal HIV infection receiving highly active antiretroviral treatment. AIDS Care. 2010;22;858–65. DOI: https://doi.org/ 10.1080/09540120903483018
20. Li J, Yuan L, Wu Y, Luan Y, Hao Y. The Chinese version of the pediatric quality of life inventoryTM (PedsQLTM) healthcare satisfaction generic module (version 3.0): Psychometric evaluation. Health Qual Life Outcomes. 2013;11;113. DOI: https://doi.org/ 10.1186/1477-7525-11-113
21. Nkwata AK, Zalwango SK, Kizza FN, Sekandi JN, Mutanga J, Zhang M, et al. Quality of life among perinatally HIV-affected and HIV-unaffected school-aged and adolescent Ugandan children: a multi-dimensional assessment of wellbeing in the post-HAART era. Qual Life Res. 2017;26;2397–2408. DOI: https://doi.org/10.1007/s11136-017-1597-2
22. Punpanich W, Boon-Yasidhi V, Chokephaibulkit K, Prasitsuebsai W, Chantbuddhiwet U, Leowsrisook P, et al. Health-related quality of life of Thai children with HIV infection: A comparison of the Thai Quality of Life in Children (ThQLC) with the Pediatric Quality of Life InventoryTM version 4.0 (PedsQLTM 4.0) Generic Core Scales. Qual Life Res. 2010;19;1509–16. DOI: https://doi.org/10.1007/s11136-010-9708-3
23. Varni J, Burwinkle TM, Seid M, Skarr D. The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability, and validity. Ambul Pediatr. 2003;3;329-41. DOI: https://doi.org/10.1367/1539-4409(2003)003<0329:tpaapp>2.0.co;2
24. Xu T, Wu Z, Yan Z, Rou K, Duan S. Measuring health-related quality of life in children living in HIV/AIDS-affected families in rural areas in Yunnan, China: preliminary reliability and validity of the Chinese version of PedsQL 4.0 generic core scales. J Acquir Immune Defic Syndr. 2010;53;111-5. DOI: https://doi.org/10.1097/QAI.0b013e3181c7dfa0
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Accepted 2024-02-27
Published 2024-02-28
