Since the onset of the epidemic, HIV has caused around 32 million deaths worldwide (World Health Organization, 2019). Estimates of the prevalence of people living with HIV (PLHIV) worldwide and in Brazil were 0.49 and 0.41%, respectively at the end of 2018 (World Health Organization, 2019).

Due to the effectiveness of preventive measures, diagnoses and health care in PLHIV, the condition is now considered chronic, that is, involving continuous management for several years (Schaurich et al., 2006; Yehia et al., 2008; Swendeman et al., 2009; Rabkin and Nishtar, 2011; Deeks et al., 2014).

One of the tools of the Chronic Care Model (CCM), used internationally to organize chronic care, is the Patient Assessment of Chronic Illness Care (PACIC) (Wagner, 1998; Wagner et al., 2001; Bodenheimer et al., 2002). The PACIC has previously been applied for a number of chronic nontransmissible conditions (Aragones et al., 2008; Schmittdiel et al., 2008; Steurer-Stey et al., 2012; Abbott et al., 2018; Desmedt et al., 2018; Pilipovic-Broceta et al., 2018). In Brazil, PACIC has been applied mainly to the diseases diabetes and hypertension (Moysés et al., 2012; Castro et al., 2018; Silva et al., 2018). The questionnaire evaluates the quality of care from the patient’s perspective, assessing the components of the CCM and the performance of teams in promoting self-care (Wagner et al., 2001; Glasgow et al., 2005).

However, to date, no studies have applied the PACIC to PLHIV. Using the PACIC in this condition could determine patient perception and help health facilities monitor the quality of care and support self-care. The involvement of PLHIV in self-care, respecting and encouraging their autonomy as co-responsible in the treatment, is important in ensuring they obtain better clinical outcomes (Wagner et al., 1996; Glasgow et al., 2006).

In 2000, the Ministry of Health, in partnership with research groups from public Brazilian universities, developed Qualiaids, a questionnaire to assess the quality of outpatient care for PLHIV. However, this instrument does not take the patient’s perspective into account (Qualiaids, 2019). Thus, the PACIC could be considered a complement to Qualiaids in assessing HIV outpatient services. In addition to evaluating care quality, the PACIC can guide interventions into the interpersonal aspects that influence adequate management of the condition (Wagner et al., 1996; Wagner, 1998; Glasgow et al., 2005; Tu et al., 2013; Abdulrahman et al., 2019). These aspects are not addressed in the Brazilian Qualiaids questionnaire.

The following criteria were considered to compare the present study with others in the literature: having applied the PACIC to any chronic illness and being a Brazilian study. According to the results of a systematic review with meta-analysis, the PACIC was not created for comparisons between countries, since how cultural and idiomatic factors affect the overall score remains unknown (Arditi et al., 2018). A comprehensive review on PACIC application showed that the questionnaire is little used in the world. Between 2005 and 2018, a mere 85 studies were found, only two of which were Brazilian (Arantes et al., 2019; Schwab et al., 2014; Silva et al., 2018). None of the studies were conducted in PLHIV.

Thus, the aim of the present study was to adapt and apply the PACIC to PLHIV, for the first time, in order to determine their perception of the quality of outpatient care provided at a reference hospital in the Federal District.

During the study, 79 PLHIV were invited to take part, but only 30 were included, as shown in Figure 1.

Based on the results presented in Table 1, the median age of the subjects was 42.5 years (q1-q3, 29.5–48.3), with greater frequency of men and schooling level not contained on the medical charts, non-white skin color, and residents in the Southwest region. The medians for time since diagnosis and time enrolled at the outpatient clinic were 4.0 (2.3–13.3) and 4.5 years (2.0–10.0), respectively. Only three people reported an adverse reaction to ART. According to the medical charts, more than 76% exhibited undetectable viral load, even though around 35% used the preferential scheme in line with the Brazilian protocol (Brasil, 2018). Around 75% of the PLHIV had regular follow-up to ART and several exhibited comorbidities (63.3%).

With respect to access, slightly more than half reported having access to other specialties or examinations in the hospital. There were a median of three infectologist visits per year, monthly dispensing of medication, but few or no psychosocial visits. It is important to underscore that more than 90% of the sample had no registered mental problems.

The median PACIC score (3.5; min-max: 1.0–5.0) showed that the patient perceived the quality of outpatient care provided by the hospital as basic (Figure 2). The median of each component was lowest for “follow-up/coordination” and highest for “delivery system design/decision support” (Figure 3).

Considering each of the component questions, with respect to “patient activation”, more than 75% of PLHIV reported that they were asked by the health team about any problems in the use of medication or their effects “most of the time” or “always”. On the other hand, nearly 50% of patients answered that they had the right to information on the therapeutic plan “none of the time” or “a little of the time” (questions 1 and 2) (Figure 3). This component obtained a median of 3.0 (min-max: 1.0–5.0) and was therefore assessed as exhibiting basic quality (Figure 2).

The “delivery system design/decision support” component (5.0; min-max: 1.0–5.0) obtained one of the highest scores. More than 75% of respondents were satisfied with the organization of treatment and received information on how self-care could influence HIV management. However, this information was not usually provided in written form (Figure 3).

The non-availability of written information was also observed in the “goal setting” component, where 87% of PLHIV reported not receiving the treatment plan. It was also noted that the health team discussed health habits with the patients (Figure 3). This component obtained a median of 3.0 (min-max: 1.0–5.0) (Figure 2).

Nearly 50% of patients reported that they “always” felt supported by the health team in solving problems related to HIV management, except during what they considered “hard times” (43%) (Figure 3). The “problem solving/contextual counseling” component obtained a median of 4.0 (min-max: 1.0–5.0) and lowest variability in the group (Figure 2).

The worst assessed component, with limited quality, was “follow-up/coordination” which obtained a median of 1.0 (min-max: 1.0–5.0) (Figure 2). Although most of the PLHIV received multiprofessional care, many were not contacted by the team to assess treatment evolution after a visit (73%) and did not feel encouraged to attend community programs (67%) (Figure 3).

The PACIC results showed that the people living with HIV treated at this reference hospital considered that the quality of the outpatient care provided was basic. The “delivery system design/decision support” component received the best assessment, and “follow-up/coordination” the worst.

Based on the PACIC results, patients considered the quality of the outpatient care provided to PLHIV to be basic (3.5; min-max: 1.0–5.0) that is, there is still room to improve the healthcare measures implemented, particularly those not identified by users of the service. A number of Brazilian studies that applied the PACIC to National Health System (SUS) patients under treatment for chronic conditions, primarily people with diabetes and hypertension, obtained results that ranged from limited to basic quality, similar to our findings (Moysés et al., 2012; Castro et al., 2018; Silva et al., 2018). In terms of public health, the quality of the services provided by the hospital, as perceived by PLHIV, is comparable to that offered by the SUS for other chronic illnesses.

Analysis of each component of the questionnaire shows that in “patient activation”, most PLHIV reported that they were asked by the health team about their problems in using drugs or their side effects “most of the time” or “always”. This is confirmed by the clinical findings for regular follow-up, undetectable viral load and alternative treatment in most of the participants. Most of the patients under alternative ART indicated the need to change medication because of adverse reactions or therapeutic failure (salvage therapy) (Brasil, 2018). In a study conducted with diabetic patients, most of the participants indicated that the professionals “always” asked them about possible problems with the medication (Castro et al., 2018). However, in another study carried out with diabetic and hypertensive patients, most reported that this question is never a priority during treatment (Silva et al., 2018). Adverse reactions are one of the causes of non-adherence to HIV treatment (Silva et al., 2015); as such, it is assumed that guaranteeing regular follow-up should be one of the priorities of the multidisciplinary team. When changing medication, the new therapeutic plan should be reinforced with the participation of the entire multiprofessional team, especially pharmacists, in order to help overcome insecurities about initiating a new therapy (fear of new adverse reactions) and uncertainties regarding the new scheme, in addition to reinforcing the importance of treatment adherence (Brasil, 2007).

On the other hand, nearly half of the patients reported that they were only able asked their opinion about their treatment or therapeutic options to establish their therapeutic plan “a little” or “none of the time” (questions 1 and 2). This finding corroborates studies where patient autonomy was assessed as being limited (Moysés et al., 2012; Castro et al., 2018; Silva et al., 2018). It is important to underscore that patients are generally unaware of their rights, especially regarding information and their participation in managing their condition (Ribeiro, 2006; Brasil, 2015). The findings demonstrate the need to respect the right of PLHIV to be informed of the existing protocol and why the ART selected is the best for them.

In the “delivery system design/decision support” component, most of the patients were satisfied with the organization of the treatment and the information received on self-care. Other studies showed that these measures are the best assessed in this component of the questionnaire, having received the highest number of “always” answers (Moysés et al., 2012; Castro et al., 2018; Silva et al., 2018). Patient satisfaction is a complex assessment element. This was confirmed in the present study with the findings of median access to other specialties and examinations and high satisfaction with treatment organization. Effective interactions between the health team and patients, where support for self-care is encouraged, characterize adequate quality for the care of chronic illnesses, reaching better patient satisfaction results and their adherence to the service (Wagner et al., 1996).

On the other hand, in the “goal setting” component, when patients were asked if they received the treatment plan in written form, more than 80% answered “none of the time”. These findings are similar to those of other studies that used the PACIC for different chronic illnesses (Melchior et al., 2006; Castro et al., 2018; Silva et al., 2018). The high demand for treatment and the little time available for consultations may force professionals to prioritize only verbal instructions.

In the results of the “problem solving/contextual counseling” component, patients do not feel supported by the health team in the management of HIV during “hard times.” In the present study, there was low demand for psychosocial support to cope with HIV, given that anxiety and depression are frequent emotional changes among PLHIV (Remor, 1999). The similar proportion in the answer categories of this item, primarily when the “none of the time” and “most of the time/always” groups were compared suggests that 1) help in planning self-care during “hard times” occurs only when requested by the patient; or 2) the health team does not recognize when the PLHIV is in a crisis situation and/or do not feel comfortable intervening. Despite the difficulty defining them in the practice of caregiving, support measures for patients are important throughout life, especially during hard times (Caetano and Pagliuca, 2006; Desmedt et al., 2018).

The “follow-up/coordination” component was the worst assessed, with limited quality (score of less than 3). Although patients reported receiving multiprofessional care, the team does not follow up after the visit. In addition, patients do not feel encouraged to seek the resources available in the community. In a study conducted in 2014 at the same hospital, the institution had limited capacity to forge partnerships with community resources to care for PLHIV (Silva et al., 2019). Similar results were found for other chronic conditions (Moysés et al., 2012; Castro et al., 2018; Silva et al., 2018). These findings may indicate the existence of barriers to continuity of care, lack of partnerships with community resources such as patient associations, churches and non-governmental organizations, and the importance of integration with primary care and health promotion initiatives.

It is believed that the PACIC may help monitor quality of care in terms of organizing health and supporting self-care, since it enriches the overall care provided to PLHIV. In addition, it is proposed that it be used as an assessment tool of the quality of outpatient care to complement evaluation by Qualiaids, which does not address the patient perspective and the interpersonal aspect of quality (Wagner et al., 1996; Wagner, 1998; Glasgow et al., 2005; Tu et al., 2013; Abdulrahman et al., 2019).

Despite the small convenience sample, the researchers found that the sample reached the saturation level corresponding to the perception of PLHIV treated at an outpatient facility of a single health service. However, we cannot state that it is representative of Brazilian people living with HIV. In addition, there was a logistic limitation of human and financial resources to apply the questionnaire that precludes a broader study; however, we underscore the unprecedented use of the tool in HIV, previously applied for other chronic illnesses in Brazil and worldwide. Moreover, there were no discrepancies between the data collected in the interviews, on the medical charts and from the PACIC questions. Although the sample was not representative of the Federal District or Brazil, the data can clarify the perception of care in a group and may result in improvements that benefit the entire study population.

Based on the findings of this study, it is recommended that the PACIC be applied to a representative sample of the population from the hospital or the Federal District. It could also be used in multicenter studies in Brazil in order to assess perception of the quality of outpatient care provided to PLHIV in health systems and different patients, such as those at the onset of treatment, with therapeutic or virologic failure, or comorbidities, among others, and compare the results among them. Additionally, studies should be conducted to determine the association between sociodemographic and clinical variables and access to services, and their influence on the perception of PLHIV regarding the quality of the care received.

Based on the PACIC results, the people living with HIV treated at this reference hospital considered that the quality of the outpatient care provided was basic. The “delivery system design/decision support” component received the best assessment, and follow-up/coordination the worst. It is believed that the questionnaire may complement Qualiaids in assessing the quality of outpatient care, reinforcing the importance of patient participation at all stages of care.

These findings may help understand the strengths and weaknesses of outpatient care provided to PLHIV, where the aim is to plan and establish strategies and measures to manage this condition, supporting the self-care of patients. Since this is the first time PACIC has been applied to PLHIV, further research is needed to confirm the findings, using a larger number of patients and adequate validation of the questionnaire.