The widespread availability of potent HIV treatment (ART) in Canada and other high-income countries has transformed HIV care. For many people with HIV, care is no longer focused on preventing and treating life-threating infections (AIDS). The power of ART is so tremendous that researchers project and report that many ART users will have a near-normal life expectancy.
The focus of medical appointments today for many ART users has largely turned to preventing issues arising from other chronic health conditions, many of which are associated with aging and persistent inflammation. As ART users live longer, some of them may have to grapple with issues that were not previously of primary concern, such as those related to mental health, drug dependency, violence in relationships, homelessness, persistent fatigue, frailty and so on.
Patient-reported outcomes (PROs)
To help doctors, nurses and their patients better prepare for their next appointment, some cancer treatment centres have been asking incoming patients about certain key aspects of health and well-being prior to their visit. Patients can be surveyed about a wide range of issues, including pain, general health, quality of life, mental health and more. The responses of these surveys are summarized and then sent to the medical care team just before the patient’s appointment. Analysing the responses to these surveys (called patient-reported outcomes, or PROs) has been found to have a positive impact on patient satisfaction and communication between patients and their healthcare providers in the field of cancer treatment.
It would therefore be a good idea to adapt such surveys for people with HIV and to assess the impact of PROs on them and their interaction and care with their healthcare providers.
The PROgress project
A team of researchers at the University of Washington along with other researchers at clinics in Florida and Toronto cooperated in a study to design, implement and assess the capture and impact of PROs on both patients and their healthcare providers.
The survey for capturing PROs took about nine minutes to complete using electronic tablets (iPads). After completion of the survey, the data were evaluated by software and summarized in one page for the healthcare provider just prior to the patient visit. The analytic software flagged any issues for discussion based on the patient’s responses to the survey.
The study team found that the use of PRO surveys achieved the following:
- improved communication between patients and their healthcare providers
- increased the number of complex health and behavioural issues identified, recorded and acted upon; such issues included anxiety and thoughts of self-harm
Overall satisfaction with the process and result of capturing and discussing issues raised by PROs was high. Furthermore, both patients (82%) and healthcare providers (82%) found that the PRO surveys improved the value of the patient-healthcare provider visit.
The Toronto site for the PROgress study was at St. Michael’s Hospital. Based on the promising results, researchers are working on refining and extending the use of PROs to some other clinics in Ontario in partnership with the Ontario HIV Treatment Network.
The PROgress study was complex and involved several different phases, including preparation, setup, and testing on about 200 participants before rolling it out to a larger study population. The full details of the study are beyond the scope of this report, but here is a summary of key elements.
Staff at the HIV clinics in the study received training on how to integrate PROs into daily clinical practice by researchers from the University of Washington at Seattle who have become experts in such issues with PROs.
The surveys for the PROs enquired about many issues using previously validated and widely used questionnaires, such as the following:
- alcohol use
- drug use
- sexualized drug use (“chemsex”)
- sexual behaviour
- adherence to ART
- physical symptoms
- nicotine use
- gender identity
- sexual orientation
- intimate partner violence
- current healthcare
- affordability of medication
Researchers reviewed the medical records of participants to assess the impact that PROs might have had. They also surveyed patients and healthcare providers about their thoughts on the impact of PROs.
Here are some areas that were investigated by the researchers.
Reach – people with HIV who were willing to engage with PROs
Among 1,813 eligible patients, 90% (1,632 people) agreed to participate in the study.
The reasons that some people gave for refusing or being unable to participate (among 181 people) were as follows:
- language barriers – 68 people
- felt that PROs were not needed or useful – 22 people
- literacy barriers – 21 people
- visual difficulty (including the lack of reading glasses) – 11 people
Impact of PROs on clinical practice
The researchers found that delivering the summary of PROs to healthcare practitioners with key issues flagged for attention “increased the number of complex health and behavioural issues that were identified, recorded and acted on.”
They found that healthcare providers “were significantly more likely to document [whether patients had thoughts of self-harm] and anxiety and were significantly more likely to refer to mental health services for anxiety” than they were before PROs were available.
After PROs became available, healthcare providers were more likely to document the following issues:
- dissatisfaction with ART
- experiences of psychological distress that patients may have had
Views of healthcare providers
Eleven healthcare providers were surveyed about the impact of PROs. According to the researchers, “nine of them (82%) agreed or strongly agreed that the PROs helped them prioritize discussion points with patients, identified topics that otherwise might not have been brought up, led to more discussions on potentially sensitive topics, and added value to the visit overall.” The researchers added that “most providers (eight of the 11 or 73%) found that the PROs made their consultation easier.”
Based on the study’s results, 100% of healthcare providers and clinic staff decided to keep using PROs beyond the duration of the study.
Impact of PRO collection process on the clinic workload
HIV clinics are busy places and healthcare providers tend to be cautious about introducing new processes and procedures that might increase workload. However, the researchers found that healthcare providers perceived PROs as “having a minimal and/or manageable impact upon workload and time for providers.” The researchers found that other clinic staff regarded PROs as providing added value to the patient visit. Additional tasks triggered by the collection of PROs were found to add approximately four minutes to each patient visit. This additional time included explaining the procedures involved with PRO collection and analysis to patients, keeping an eye on patients to determine when they had completed the survey, and retrieving the electronic tablets and sanitizing them.
Views of patients
A subset of patients (200) was surveyed about the collection and impact of PROs. The researchers reported that large majorities agreed or strongly agreed on the following:
- “the PRO assessment helped them consider overall health (88%)”
- “recall health concerns to raise (80%)”
- “discuss topics that might otherwise not have arisen (76%)”
- “discuss issues difficult to speak frankly about (71%)”
- help them “decide what to talk about (67%)”
Patients who completed PROs expressed high levels of satisfaction. According to the researchers, based on evaluation questionnaires “most participants enjoyed using the assessment and found it easy to use, well explained, understandable and helpful in describing their symptoms and health behaviors. They also found the amount of time taken to complete the PRO assessment to be highly acceptable.”
The researchers found that 65% of patients reported “that they had discussed the burden of their HIV medication and its impact on their life.”
The cost of implementing any intervention is important to consider. The researchers found that the cost of implementing PROs was relatively low and included the purchase of tablet computers (four in the Florida clinic and eight at St. Michael’s HIV clinic in Toronto). According to the researchers, the largest costs were “human resources, including time for setup, training, monitoring and reviewing. Once the PRO program was established, the program took up about 9% of the daily time of a full-time employee (based on an average of 11 patient visits per day).”
Bear in mind
The study found that the use of PROs was helpful for both patients and healthcare providers. What’s more, the researchers found that PROs were able to bring healthcare providers’ attention to issues “which are known to be less observable, underreported and/or inadequately addressed in consultations.”
The researchers found that PROs revealed that about 25% of patients were dissatisfied with their ART. The study took place at a time when there are several well-tolerated one-pill daily treatment options. It is possible that dissatisfaction arose because of issues such as difficulty swallowing pills, stress about adherence, and concerns about pill-taking revealing a person’s HIV status. Such issues have been found in another study.
As mentioned earlier, about 10% of people who were eligible to participate in the PROgress study declined due to different barriers such as language and visual issues. The study team noted that many of the questions incorporated into the PRO survey were taken from other well-validated and widely used surveys.
Language barriers could be overcome by implementing translated versions of the questions (which are available).
For people with visual difficulty (that cannot be resolved with reading glasses) and others who have literacy issues, it is possible to enquire about PROs using audio.
The study took place in community clinics and its applicability is probably greater than with previously published research about PRO implementation.
For the future
The research team plans to assess the impact of PROs over the long term and additional interviews with healthcare providers and patients have been done and need to be evaluated. The researchers stated that the Ontario HIV Treatment Network (OHTN) hopes to extend the collection and implementation of PROs to many of the HIV clinics with which it is affiliated.
Based on the results from the PROgress study, surveying patients about important issues prior to an appointment with their healthcare provider can help maximize the impact and value of medical visits.
For more information on the PROgress project, visit https://progresshivcare.org/
This research was funded by ViiV Healthcare.
Short D, Fredericksen RJ, Crane HM, et al. Utility and impact of the implementation of same-day, self-administered electronic patient-reported outcomes assessments in routine HIV care in two North American clinics. AIDS and Behavior. 2022 Jul;26(7):2409-2424.
Reprinted with permission from CATIE Treatment Update. https://www.catie.ca/treatmentupdate-246/preparing-patients-and-doctors-...