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Abstract
Background Depression is common among adolescents living with HIV (ALHIV) and impacts their quality of life. However, it is not routinely detected and treated due to a lack of screening tools, coupled with large numbers of clients in the HIV clinics and limited staff. Enabling adolescents to do a self-assessment for depression on a tablet computer could possibly improve the detection of depression in this population. We set out to assess the detection and referral of depression among ALHIV in care in Uganda.
Methods This was a quasi-experimental study design with a historical control at Baylor College of Medicine of Children’s Foundation. We conducted a retrospective chart review of 425 adolescents covering a 3-month period and documented the proportion screened for depression and referred to the clinic counsellors. From July to September 2022, eligible adolescents aged 10–19 years who had assented and consented self-assessed for depression using a Patient Health Questionnaire-Adolescent on a tablet computer-assisted self-interview (CASI). Adolescents who screened positive had a prompt on the tablet computers referring them to the counsellor for mental healthcare. We compared the proportions of participants screened for depression and referred to counsellors from clinic chart review and on the CASI using paired t-tests.
Results Out of 425 medical records reviewed, 54% (231/425) were females and the median age was 15 years. Of the participants who self-assessed on the CASI, 52% (222/425) were males and the median age of all participants was 16 years. Self-assessment on the CASI increased the rate of detection of depression from 0% to 23.3%. Of those referred on the CASI, 15% accessed care at the referral point.
Conclusion The use of CASI improves the rate of detection of depression among ALHIV; however, there is a need to address the barriers to effective referral for mental health services.
- Adolescent Health
- HIV
- Information Technology
Data availability statement
All data relevant to the study are included in the article or uploaded as online supplemental information. Not applicable.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
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WHAT IS ALREADY KNOWN ON THIS TOPIC
Depression is common among adolescents living with HIV; however, there is limited resources for routine screening and management.
WHAT THIS STUDY ADDS
Using a computer-assisted self-interview (CASI) by adolescents enables early detection and facilitates early treatment.
HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY
However, there is a need to create feasible referral pathways. More research is needed on the feasibility, acceptability and cost-effectiveness of the CASI.
Introduction
According to UNAIDS,1 1.7 million adolescents are living with HIV globally. Adolescents with chronic physical illnesses like HIV are more likely to suffer from psychological illnesses such as depression compared with their healthy peers.2 Depression is the leading cause of disability among adolescents3 and the onset of this disease in this age group is associated with a chronic and episodic course of the illness in adult life.4 5 Depression is common among adolescents with chronic physical illnesses due to their symptoms, long-term medication regimens and highly expressed emotions from their parents.2 Additionally, adolescents living with HIV (ALHIV) face social stigma, psychological distress, concern about disease progression, pain and ill physical health due to comorbidities, and death which may all lead to depression.6–8 Depression results in low quality of life, poor social and academic functioning, and poor adherence in this population.9–11
Uganda contributes 4% of the world’s ALHIV and this makes it one of the 15 highest burden countries globally.12 Depression is the leading cause of disability among ALHIV with a prevalence of ~16% in Uganda.13 Although depression is common among ALHIV and impacts their quality of life, it is not routinely detected and treated.14 A major cause of limited detection is the lack of screening tools, coupled with large numbers of clients in the HIV clinic and limited staff.15 16 There is limited data on detecting depression and referral for mental healthcare in this vulnerable population, especially in Uganda. Providing a platform for adolescents to routinely self-screen using a computer-assisted self-interview (CASI) could enhance detection of depression and result in early referral to mental healthcare with possibly improved HIV treatment outcomes.17 The use of self-paper screening forms is cumbersome and hindered by challenges like scoring, filing, storing the paper forms and transcribing the scores which are all resource-intensive.18 Computerised screening using CASI in the waiting room may provide a comfortable and fun way to involve adolescents in their physical and mental healthcare.18 The use of CASI may overcome adolescents’ concerns about talking directly to clinicians about their mental health challenges. A study conducted by Wright et al comparing computer-assisted and paper-based self-assessment for substance use found that adolescents were more honest with CASI.19 Watson et al carried out a study on perception of adolescents about CASI and found high levels of acceptability and enjoyment because the adolescents identified high levels of privacy and confidentiality with the CASI.18 This study set out to (1) determine whether depression is screened for among ALHIV in care and (2) assess the effect of self-assessment on a computer tablet by adolescents on the rate of detection of depression and referral for treatment.
Methods
This was a quasi-experimental study design with a historical control conducted at Baylor College of Medicine of Children’s Foundation-Uganda Clinical Centre of Excellence in Kampala (Baylor-Uganda COE). Baylor-Uganda COE has provided care for ALHIV for over 20 years. The centre is located in Kampala with an average monthly attendance of 500–650 adolescents (during this COVID-19 time). Over and above clinical care (provision of Anti-retroviral therapy (ART)), the Baylor-Uganda COE clinic provides education services about reproductive health, HIV preventive messages, adherence counselling, general public health messages (hygiene and prevention of communicable diseases). The counselling services are provided by clinical counsellors who are clinical health personnel. The centre has five clinical counsellors who provide HIV and adherence counselling, psychosocial support for those with psychological and social challenges. These counsellors also counsel those failing on treatment regimens and teenagers who are expectant or adjusting to different phases of life.
We included adolescents aged 10–19 years who had been in care for at least 6 months and had a caretaker to provide consent or were emancipated minors. We excluded adolescents who were too ill physically to engage in the rigorous activity of answering research questions since getting urgent medical care was prioritised to participation in the study and those unable to communicate in English or Luganda. The tools used were in English and translated to Luganda which is the commonly spoken local language in the study setting area. The dependent variable was a positive screen for depression and the sociodemographic characteristics were the independent variable. A sample size of 425 was arrived at using the formula for clinical intervention studies
Measurements and tools
Sociodemographic questionnaire
A sociodemographic questionnaire was administered to record participants’ age, sex, education level, family structure and clinical characteristics.
The Patient Health Questionnaire-Adolescent
Depression was screened using the Patient Health Questionnaire-Adolescent (PHQ-A), which was self-administered by each adolescent on a tablet computer. This technique was referred to as the CASI. The PHQ-A is a self-report tool that has been used in primary care settings outside Uganda and found to be reliable and valid for the detection of depression among adolescents.20 The psychometric properties of the adolescent version PHQ-9 were assessed with the Children’s Depression Rating Scale-Revised (CDRS-R) and Quick Inventory of Depressive Symptomatology-Adolescent (17-item) Self-Report (QIDS-A17-SR). It was reported that the PHQ-A had a Cronbach’s α coefficient of 0.879, 0.859 and 0.827 at baseline, 4 and 8 weeks while that for the CDRS-R was 0.739, 0.835 and 0.867 and for wQIDS-A17-SR was 0.712, 0.777 and 0.804, respectively. The PHQ-A had moderate convergent validity with the CDRS-R but good convergent validity with the QIDS-A17-SR. However, it was less sensitive to changes in symptom severity than the other two tools.20 The validation of the Thai version of the PHQ-A when compared with the Children’s Depression Inventory and the Centre for Epidemiologic Studies-Depression Scale showed an internal consistency coefficient of 0.92 with a specificity and sensitivity of 0.8.21
The PHQ-A is a nine-item questionnaire based on the nine symptoms of depression in the Diagnostic and Statistical Manual with a Likert scale from 0 to 4 (graded as; not at all, several days, more than half the days, nearly every day). It screens for depression symptoms over the previous 2 weeks period.
Both the PHQ-2 and PHQ-A are used in screening for depression with an acceptable accuracy.22 23
Study procedure
From 21 June 2022 to 27 June 2022, we conducted a retrospective chart review of 425 adolescents covering a 3-month period from July to September 2021 of clinic attendance who met the inclusion criteria. From the chart review, we documented the proportion screened for depression and referred to the clinic counsellors. We also collected sociodemographic and clinical factors (viral load and CD 4 count) during the chart review.
Primary data was collected between 8 July 2022 and 27 September 2022. We collected data at the same time period of the year (July–September) to prevent any seasonal bias. On the adolescent clinic days at the Baylor-Uganda COE clinic. The research assistants (RAs) sought written consent from the caretakers and assent from the adolescents at the point of triage and assessed for eligibility to participate in the study. The RAs collected sociodemographic data from eligible adolescents. Consented adolescents then proceeded to self-screen for depression using the PHQ-A which was on a tablet computer. Those who could not use the tablets were guided by the RAs on how to use them. Adolescents who screened positive (PHQ-A≥10) or had suicidal ideations were prompted to seek mental healthcare from the clinic counsellors. We recruited a total of 425 ALHIV to match the number of records collected from the chart reviews. All prompts to referral for mental healthcare were captured in the electronic patient record system for purposes of follow-up on who actually reached the referral point. The RAs and principal investigator followed up with adolescents who did not reach the counsellors after a positive screen to encourage them to seek mental health services. The team also regularly reminded the counsellors about the study and alerted them to the fact that they would receive referrals/screen positive cases.
Data management and analysis
Data was entered using Epi-Data and analysed by using Stata V.15.1.(StataCorp). Descriptive analysis was done for the sociodemographic factors. Continuous variables were summarised using means with SDs or medians with IQRs and categorical variables using their frequencies and percentages. We compared the proportions of participants screened for depression from the chart review with those from the CASI using paired t-tests online supplemental files 1 and 2.
Supplemental material
Supplemental material
Results
We reviewed 425 medical records and recruited 425 adolescents who self-screened for depression on the CASI using the PHQ-A. One participant was excluded from the study because she had visual impairment and could not use the tablet. Among participants whose clinic medical records were reviewed, 54% were females and the median age of all the participants was 15 years. The sociodemographic characteristics collected from secondary data (medical records reviews) are presented in table 1.
Sociodemographic characteristics from medical records review
Of the participants who self-assessed on the CASI 52.2% were males, and the median age of the participants was 16 years. The sociodemographic characteristics for the participants who used the CASI are in table 2.
Sociodemographic characteristics of the participants for CASI
The clinical characteristics for the participants assessed on the CASI are presented in table 3.
Clinical characteristics of the CASI participants (primary data)
We further analysed depression and referral-related measures for the participants who self-assessed on the CASI; 23.3% screened positive for depression on the PHQ-A (score≥10). This data is presented in table 4.
Depression related measures of the CASI participants (primary data)
We compared the proportions of those screened for depression from the chart reviews with those screened with the CASI. The results are shown in figure 1.
Screening for depression from chart review and CASI. CASI, computer-assisted self-interview.
We compared the proportions of positive screens for depression from the chart review with those from the CASI as shown in figure 2. The six participants screened for depression using the PHQ-2, from the medical records were aged 8–15 years, three had ever missed their medication and three had a viral load of >500 copies.
Comparison of proportions screened positive from chart review with those from the CASI. CASI, computer-assisted self-interview.
Using the CASI, the proportion of adolescents detected having depression increased from 0% to 23.3%.
Discussion
This study set out to determine the detection and referral of depression among ALHIV at a large urban HIV treatment clinic in Uganda. We compared proportions of adolescents screened for depression from medical records with those who self-screened using the CASI. From the records, six adolescents had been screened for depression in a 3-month period using the PHQ-2 and these all screened negative. This indicates that the targeted screening currently being done at the clinic may not be efficient in identifying the depressed adolescents.
There were more females from the chart review (54.3%) compared with those screened on the CASI (47.8%). The reason for this difference is not clear from the information we have. However, we note that from the clinic attendance registers, there is a slightly higher quarterly attendance of females than males.
From the medical records, the median age of the adolescents was 15 years with a median duration on ARV of 10.3 years compared with the median age of the CASI participants of 16 years and a median duration on ARVs of 11.9 years. This speaks to the validity of the study results because the two data sets are 1 year apart though same time interval of the year (July–September).
In the sociodemographic characteristics of the CASI participants, 97.7% were single and this could be explained by the fact that the majority (86.6%) of study participants were pupils/students hence they were focused on the academic responsibilities.
All the adolescents assessed on the CASI had some level of education and this could be because of the universal primary24 and secondary education programme25 provided by the government of Uganda for the past 27 years and 17 years, respectively, with free education for these levels of education. A total of 97.2% had achieved primary or secondary level education which would be expected given the age category of 10–19 years and that 86.6% of the participants were students.
In the chart review, 88.5% of the participants were on dolutegravir (DTG)-based ART regimen and this percentage increased to 97.3% 1 year later in the CASI sample. This could be because of the Uganda Ministry of Health recommendation to have DTG replace efavirenz in first-line ART regimens.26 27
There was a higher percentage of participants (90.5%) with a viral load below 1000 copies in the chart review sample compared with the sample assessed on the CASI (87.8%). This could be explained by the fact that more participants from the CASI sample (35.3%) reported missing their medication compared with 11.8% from the chart review hence affecting their clinical parameters. These findings resonant well with previous studies that have shown a relationship between adherence to ART and viral load suppression.28–30 A study conducted through the British Columbia Centre for Excellence in HIV/AIDS Drug Treatment Programme showed that there were higher CD4 counts among participants who were adherent to medication than those who were not.31
From the use of the CASI, we identified 23.3% (99/425) of adolescents as having depression, a figure similar to that documented in a study by Akimana et al (2019) which found the prevalence of depression among adolescents with cancer at the Uganda Cancer Institute to be 26%.32 These findings also support the CASI as an effective method of self-screening for depression in a busy primary care setting with limited staff.17 The use of the CASI is superior to self-paper screening forms which are cumbersome and hindered by challenges like scoring, filing and storing the paper forms and transcribing the scores which are all resource intensive and not feasible in primary care settings that have huge patient numbers with scarce staff numbers. This makes the CASI a user-friendly screening method for a busy centre and yet delivers timely results for timely intervention.17 Previous studies have indicated that adolescents may be more comfortable and honest with their responses about sensitive information like their mental health in using the CASI to assess their mental health symptoms than responding to tools administered by clinicians.17–19 33
Given the current advancement in technology and research showing that technology based health programmes attract adolescents, the use of the CASI could actually be a fun and comfortable way to engage adolescents in their own physical and mental health.34 The CASI could further be incorporated on the phones of the adolescents for periodic self-assessment at their convenience and outside the clinical visits.35 36
Out of the 99 adolescents who screened positive for depression and were referred by a prompt on the CASI to the clinic counsellors, only 15 (15.2%) interacted with the counsellor. Reasons for failure to access care at the referral point as identified from qualitative interviews (findings reported in another study) were; lack of time, perceived stigma, misconceptions about the counselling process, limited awareness, inadequate information at the point of referral and lack of trust about confidentiality in the counselling process. These reasons are similar to those from previous studies about failure of the referral processes for mental healthcare in primary care settings.37 38
The main limitation of the study was the fact that this was a cross-sectional study conducted at a centre of excellence hence results may not be generalisable to other HIV treatment Centres. The study was conducted at a centre of excellence where technology gadgets like tablet computers are easily accessible and this may not be the case with the rest of HIV treatment centres in Uganda with technology challenges further limiting generalisability of the results. The exclusion of adolescents who were too ill physically to engage in answering study questions because obtaining urgent medical care was prioritised could have biased the results since this category is more prone to depression.
In conclusion, the use of CASI does improve the rate of detection of depression among ALHIV; however, adolescents are unlikely to seek mental healthcare at the clinic following a prompt on the CASI. There is a need for the clinic staff to provide more awareness on mental health and counselling services to facilitate access to mental health services by the adolescents at the clinic.
There is need for further studies on the acceptability, feasibility and cost-effectiveness of the CASI in primary care settings to better inform policy-makers.
Data availability statement
All data relevant to the study are included in the article or uploaded as online supplemental information. Not applicable.
Ethics statements
Patient consent for publication
Ethics approval
We sought permission to conduct the study from the research and ethics office at Baylor-Uganda COE clinic. Ethical approval was sought from TASO Research and Ethics Committee at Mulago (TASO 2021-57) and the Uganda National Council of Science and Technology (HS2055ES). We sought a waiver of consent from the TASO IRB for the use of medical records at the clinic. Written informed assent was obtained from every study participant and consent was obtained from the caretakers of the adolescents and the emancipated minors. All participants were reimbursed ~US$4 for their time in answering the study questions. Adolescents who screened positive for depression and suicidal behaviour but never reached the referral point for mental healthcare with the clinic counsellors were followed up by the study team using telephone calls to encourage them to visit the clinic counsellors. A list of these adolescents was also shared with the clinical head of the unit to facilitate their linkage to mental healthcare.
Acknowledgments
We appreciate the research assistants who collected the data, the adolescents living with HIV and their caretakers for participating in the study. We are also thankful to the staff at Baylor Centre of Excellence for the support rendered to us during data collection.
References
Footnotes
Contributors RA contributed to the conceptualisation of study design, data collection, analysis and interpretation. She has also been pivotal in the drafting and revision of the manuscript. PJE was involved in the design of the study, data collection, interpretation of the data and revision of the manuscript. JBK made significant contributions in data collection, analysis and interpretation of results. She was involved in the revision of the manuscript. DA made significant contribution to conceptualisation of the study design, analysis and interpretation of results and revision of the manuscript. RA is responsible for the overall content as the guarantor.
Funding This work was supported by the Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD) and Fogarty International Center (FIC) award number D43TW011541.
Disclaimer The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Competing interests None declared.
Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.
Provenance and peer review Not commissioned; externally peer reviewed.
Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.