High Prevalence of Posttraumatic Stress Disorder Symptoms Found in Well-Treated People with HIV after the Introduction of Patient-Reported Outcome Measures.
Kevin Moody, Colette Smit, Pythia T Nieuwkerk, Maarten Bedert, Elise Nelis, Jeannine Nellen, Kim Sigaloff, Annouschka Weijsenfeld, Laura Laan, Claire Bruins, Suzanne E Geerlings, Marc van der Valk
Author Information
Kevin Moody: Division of Infectious Diseases, Amsterdam University Medical Center, University of Amsterdam, G7, Meibergdreef 9, Amsterdam, 1105 AZ, The Netherlands. k.moody@amsterdamumc.nl. ORCID
Colette Smit: Stichting HIV Monitoring, Amsterdam, The Netherlands. ORCID
Pythia T Nieuwkerk: Amsterdam Public Health Research Institute, Amsterdam University Medical Center, Amsterdam, The Netherlands. ORCID
Maarten Bedert: Division of Infectious Diseases, Amsterdam University Medical Center, University of Amsterdam, G7, Meibergdreef 9, Amsterdam, 1105 AZ, The Netherlands. ORCID
Elise Nelis: Knowledge and Care Center for Gender Dysphoria, Amsterdam University Medical Center, Vrije Universiteit, and Kaleidos LGBT+ Mental Health Center, Amsterdam, The Netherlands.
Jeannine Nellen: Division of Infectious Diseases, Amsterdam University Medical Center, University of Amsterdam, G7, Meibergdreef 9, Amsterdam, 1105 AZ, The Netherlands. ORCID
Kim Sigaloff: Amsterdam Institute for Immunology and Infectious Diseases (AII), Amsterdam University Medical Center, Amsterdam, The Netherlands. ORCID
Annouschka Weijsenfeld: Division of Infectious Diseases, Amsterdam University Medical Center, University of Amsterdam, G7, Meibergdreef 9, Amsterdam, 1105 AZ, The Netherlands. ORCID
Laura Laan: Division of Infectious Diseases, Amsterdam University Medical Center, Vrije Universiteit, Amsterdam, The Netherlands.
Claire Bruins: Division of Infectious Diseases, Amsterdam University Medical Center, University of Amsterdam, G7, Meibergdreef 9, Amsterdam, 1105 AZ, The Netherlands.
Suzanne E Geerlings: Division of Infectious Diseases, Amsterdam University Medical Center, University of Amsterdam, G7, Meibergdreef 9, Amsterdam, 1105 AZ, The Netherlands. ORCID
Marc van der Valk: Division of Infectious Diseases, Amsterdam University Medical Center, University of Amsterdam, G7, Meibergdreef 9, Amsterdam, 1105 AZ, The Netherlands. ORCID
People with HIV (PWH) are at greater risk of experiencing mental health problems, such as depression and post-traumatic stress disorder (PTSD). The purpose of our study was to determine the prevalence of posttraumatic stress disorder PTSD in PWH. PWH in care Amsterdam University Medical center (Amsterdam UMC) with access to the electronic patient portal were offered patient-reported outcome measures (PROMs) between May 2022 and May 2023, including the PC-PTSD-5 screen for PTSD as part of routine clinical care. Risk factors for a clinically relevant PC-PTSD-5 score were determined using univariate and multiple logistic regression analyses. Of 2476 PWH included, 1384 (55.9%) had access to the electronic patient portal of whom 474 (34.2%) completed the PC-PTSD-5. PWH without access to the patient portal were more often female, born in low- and middle-income countries, acquired HIV more often via heterosexual contact, and had worse HIV-related outcomes compared to those with access. Of 474 PWH who completed the PC-PTSD-5 screening question, 62 (13.1%) reached the threshold for clinically relevant PTSD. Age less than 50 years (OR 2.29, 95% CI: 1.21-4.35), and having originated from low- or middle-income countries (OR 2.02, 95% CI: 1.09-3.76) were associated with PTSD. Our findings show that 13% of PWH with a well-controlled HIV infection with access to the electronic patient portal at Amsterdam UMC experienced clinically relevant PTSD complaints.
Trickey A, Sabin CA, Burkholder G, Crane H, d’Arminio Monforte A, Egger M, et al. Life expectancy after 2015 of adults with HIV on long-term antiretroviral therapy in Europe and North America: a collaborative analysis of cohort studies. Lancet HIV. 2023;10(5):e295–307. https://doi.org/10.1016/s2352-3018(23)00028-0 .
[DOI: 10.1016/s2352-3018(23)00028-0]
Pence BW. The impact of mental health and traumatic life experiences on antiretroviral treatment outcomes for people living with HIV/AIDS. J Antimicrob Chemother. 2009;63(4):636–40. https://doi.org/10.1093/jac/dkp006 .
[DOI: 10.1093/jac/dkp006]
Hou J, Fu J, Meng S, Jiang T, Guo C, Wu H, et al. Posttraumatic stress disorder and Nonadherence to treatment in people living with HIV: a systematic review and Meta-analysis. Front Psychiatry. 2020;11:834. https://doi.org/10.3389/fpsyt.2020.00834 .
[DOI: 10.3389/fpsyt.2020.00834]
Nightingale VR, Sher TG, Mattson M, Thilges S, Hansen NB. The effects of traumatic stressors and HIV-related trauma symptoms on health and health related quality of life. Aids Behav. 2011;15(8):1870–8. https://doi.org/10.1007/s10461-011-9980-4 .
[DOI: 10.1007/s10461-011-9980-4]
Neigh GN, Rhodes ST, Valdez A, Jovanovic T. PTSD co-morbid with HIV: separate but equal, or two parts of a whole? Neurobiol Dis. 2016;116–23. https://doi.org/10.1016/j.nbd.2015.11.012 . 92(Pt B):.
Brezing C, Ferrara M, Freudenreich O. The syndemic illness of HIV and trauma: implications for a trauma-informed model of care. Psychosomatics. 2015;56(2):107–18. https://doi.org/10.1016/j.psym.2014.10.006 .
[DOI: 10.1016/j.psym.2014.10.006]
Burton MS, Cooper AA, Mello PG, Feeny NC, Zoellner LA. Latent profiles of Comorbid Depression as predictors of PTSD Treatment Outcome. Behav Ther. 2021;52(4):970–81. https://doi.org/10.1016/j.beth.2020.12.005 .
[DOI: 10.1016/j.beth.2020.12.005]
Shalev A, Liberzon I, Marmar C. Post-traumatic stress disorder. N Engl J Med. 2017;376(25):2459–69. https://doi.org/10.1056/NEJMra1612499 .
[DOI: 10.1056/NEJMra1612499]
Koenen KC, Ratanatharathorn A, Ng L, McLaughlin KA, Bromet EJ, Stein DJ, et al. Posttraumatic stress disorder in the World Mental Health surveys. Psychol Med. 2017;47(13):2260–74. https://doi.org/10.1017/s0033291717000708 .
[DOI: 10.1017/s0033291717000708]
Ayano G, Duko B, Bedaso A. The prevalence of post-traumatic stress disorder among People Living with HIV/AIDS: a systematic review and Meta-analysis. Psychiatr Q. 2020;91(4):1317–32. https://doi.org/10.1007/s11126-020-09849-9 .
[DOI: 10.1007/s11126-020-09849-9]
Tang C, Goldsamt L, Meng J, Xiao X, Zhang L, Williams AB, et al. Global estimate of the prevalence of post-traumatic stress disorder among adults living with HIV: a systematic review and meta-analysis. BMJ Open. 2020;10(4):e032435. https://doi.org/10.1136/bmjopen-2019-032435 .
[DOI: 10.1136/bmjopen-2019-032435]
Engler K, Avallone F, Cadri A, Lebouché B. Patient-reported outcome measures in adult HIV care: a rapid scoping review of targeted outcomes and instruments used. HIV Med. 2024;25(6):633–74. https://doi.org/10.1111/hiv.13599 .
[DOI: 10.1111/hiv.13599]
Moody K, Nieuwkerk PT, Bedert M, Nellen JF, Weijsenfeld A, Sigaloff KCE, et al. Optimising HIV care using information obtained from PROMs: protocol for an observational study. BMJ Open. 2023;13(11):e073758. https://doi.org/10.1136/bmjopen-2023-073758 .
[DOI: 10.1136/bmjopen-2023-073758]
van Sighem AI, Wit FWNM, Boyd A, Smit C, Matser A, van der Valk M. HIV Monitoring Report. In: Human Immunodeficiency Virus (HIV) Infection in The Netherlands. Amsterdam: Stichting HIV Monitoring; 2022. Available: https://www.hiv-monitoring.nl/nl
Boender TS, Smit C, Sighem AV, Bezemer D, Ester CJ, Zaheri S, et al. AIDS Therapy evaluation in the Netherlands (ATHENA) national observational HIV cohort: cohort profile. BMJ Open. 2018;8(9):e022516. https://doi.org/10.1136/bmjopen-2018-022516 .
[DOI: 10.1136/bmjopen-2018-022516]
Prins A, Bovin MJ, Smolenski DJ, Marx BP, Kimerling R, Jenkins-Guarnieri MA, et al. The primary care PTSD screen for DSM-5 (PC-PTSD-5): development and evaluation within a veteran primary care sample. J Gen Intern Med. 2016;31(10):1206–11. https://doi.org/10.1007/s11606-016-3703-5 .
[DOI: 10.1007/s11606-016-3703-5]
Hanmer J, Jensen RE, Rothrock N, HealthMeasures T. A reporting checklist for HealthMeasures’ patient-reported outcomes: ASCQ-Me, Neuro-QoL, NIH Toolbox, and PROMIS. J Patient Rep Outcomes. 4. Germany2020. p. 21.
Reinius M, Wettergren L, Wiklander M, Svedhem V, Ekström AM, Eriksson LE. Development of a 12-item short version of the HIV stigma scale. Health Qual Life Outcomes. 2017;15(1):115. https://doi.org/10.1186/s12955-017-0691-z .
[DOI: 10.1186/s12955-017-0691-z]
Chan AHY, Horne R, Hankins M, Chisari C. The Medication Adherence Report Scale: a measurement tool for eliciting patients’ reports of nonadherence. Br J Clin Pharmacol. 2020;86(7):1281–8. https://doi.org/10.1111/bcp.14193 .
[DOI: 10.1111/bcp.14193]
Saunders JB, Aasland OG, Babor TF, de la Fuente JR, Grant M. Development of the Alcohol Use disorders Identification Test (AUDIT): WHO Collaborative Project on early detection of persons with harmful alcohol Consumption–II. Addiction. 1993;88(6):791–804. https://doi.org/10.1111/j.1360-0443.1993.tb02093.x .
[DOI: 10.1111/j.1360-0443.1993.tb02093.x]
Berman AH, Bergman H, Palmstierna T, Schlyter F. Evaluation of the Drug Use disorders Identification Test (DUDIT) in criminal justice and detoxification settings and in a Swedish population sample. Eur Addict Res. 2005;11(1):22–31. https://doi.org/10.1159/000081413 .
[DOI: 10.1159/000081413]
Health Measures. Northwestern University; [Available from: https://www.healthmeasures.net/score-and-interpret/interpret-scores/promis/promis-score-cut-points
Berger BE, Ferrans CE, Lashley FR. Measuring stigma in people with HIV: psychometric assessment of the HIV stigma scale. Res Nurs Health. 2001;24(6):518–29. https://doi.org/10.1002/nur.10011
[DOI: 10.1002/nur.10011]
Burch LS, Smith CJ, Anderson J, Sherr L, Rodger AJ, O’Connell R, et al. Socioeconomic status and treatment outcomes for individuals with HIV on antiretroviral treatment in the UK: cross-sectional and longitudinal analyses. Lancet Public Health. 2016;1(1):e26–36. https://doi.org/10.1016/s2468-2667(16)30002-0 .
[DOI: 10.1016/s2468-2667(16)30002-0]
Power J, Lea T, Melendez-Torres GJ, Lyons A, Norman T, Hill AO, et al. Health literacy, financial insecurity and health outcomes among people living with HIV in Australia. Health Promot Int. 2022;37(6). https://doi.org/10.1093/heapro/daac161 .
Hoare J, Sevenoaks T, Mtukushe B, Williams T, Heany S, Phillips N. Global Systematic Review of Common Mental Health Disorders in adults living with HIV. Curr HIV/AIDS Rep. 2021;18(6):569–80. https://doi.org/10.1007/s11904-021-00583-w .
[DOI: 10.1007/s11904-021-00583-w]
Bedert M, Moody K, Nieuwkerk P, van Holten N, de Wit J, van der Valk M. Between delivering chronic care and answering patients’ burdens: understanding HIV specialist nurses’ experiences in the age of treatment. J Adv Nurs. 2023. https://doi.org/10.1111/jan.15941 .
[DOI: 10.1111/jan.15941]
Dawson-Rose C, Cuca YP, Webel AR, Solís Báez SS, Holzemer WL, Rivero-Méndez M, et al. Building Trust and relationships between patients and providers: an essential complement to health literacy in HIV Care. J Assoc Nurses AIDS Care. 2016;27(5):574–84. https://doi.org/10.1016/j.jana.2016.03.001 .
[DOI: 10.1016/j.jana.2016.03.001]
Graham JL, Shahani L, Grimes RM, Hartman C, Giordano TP. The Influence of Trust in Physicians and Trust in the Healthcare System on linkage, Retention, and adherence to HIV Care. AIDS Patient Care STDS. 2015;29(12):661–7. https://doi.org/10.1089/apc.2015.0156 .
[DOI: 10.1089/apc.2015.0156]
Krause DD, May WL. Is it a Trust Issue? Factors that Influence Trust for persons living with HIV/AIDS. Health Promot Pract. 2016;17(5):711–21. https://doi.org/10.1177/1524839916629388 .
[DOI: 10.1177/1524839916629388]
Stutterheim SE, Kuijpers KJR, Waldén MI, Finkenflügel RNN, Brokx PAR, Bos AER. Trends in HIV Stigma experienced by people living with HIV in the Netherlands: a comparison of cross-sectional surveys over Time. AIDS Educ Prev. 2022;34(1):33–52. https://doi.org/10.1521/aeap.2022.34.1.33 .
[DOI: 10.1521/aeap.2022.34.1.33]
Dela Cruz A, Puri R, Tovillo JB, Hayden A, Caine V. Experiences of migrants living with HIV from HIV-Endemic Sub-saharan African countries: a systematic review of qualitative Research studies. J Immigr Minor Health. 2023;25(1):219–31. https://doi.org/10.1007/s10903-022-01340-w .
[DOI: 10.1007/s10903-022-01340-w]
Wolterink S. Focus on underserved patients: improving the collection of PROMs within the HIV outpatient clinic of the Amsterdam UMC. Delft, The Netherlands: TU Delft; 2022. Available: http://resolver.tudelft.nl/uuid:39114415-f931-49f6-8ce3-9710b714e450
