Should we measure quality of life among people with HIV? A multicentre survey of physicians' opinions in Spain

Abstract

Objectives

We assessed the opinions of physicians caring for people with HIV (PWH) from the multicentre Spanish CoRIS cohort regarding the assessment of health‐related quality of life (HRQoL).

Methods

We designed an online self‐administered questionnaire comprising 27 structured questions across four domains: (i) sociodemographic and clinical data; (ii) usefulness of measuring HRQoL; (iii) information, training and resource needed; and (iv) whether and how HRQoL should be measured. Physicians completed the questionnaire between April and June 2023.

Results

Of 131 physicians surveyed [53.8% men, median age 52 years (interquartile range: 42–60)], 90.9% and 88.6% agreed that measuring HRQoL is useful for both PWH and medical decision‐making, respectively. However, 67.2% needed training on what HRQoL is and how to measure it, 79.4% required information on validated tools, and 80.9% felt that clinical guidelines are needed. Overall, 90.1% of physicians agreed that HRQoL should be measured among PWH. Most physicians (82.8%) supported using specific scales for PWH, with 74.1% recommending annual measurement, 49.1% suggesting that nurses from HIV units conduct the assessments, and 43.1% favouring personal interviews during medical visits. At the time of the survey, 55.3% of physicians did not measure HRQoL in any patients due to time or resource constraints (75.8%).

Conclusions

Despite the recognized importance of HRQoL measurement in PWH, Spanish physicians encounter barriers such as time constraints and limited resources. Developing clear guidelines, using tailored scales, and integrating digital tools along with multidisciplinary support could enhance routine HRQoL assessments and improve patient‐centred care.

INTRODUCTION

An ongoing paradigm shift is under way due to the chronic nature of HIV infection. The focus is being shifted from a disease‐based approach to a person‐centred chronic care perspective, recognizing the need for an intersection between HIV and chronic care models [1]. Person‐centred care involves a more humanistic approach, prioritizing disease prevention, health promotion and personalized medical care, focusing on the individual needs and how HIV infection affects daily life [2]. This approach also takes into consideration the importance of the health‐related quality of life (HRQoL) among people with HIV (PWH) [3].

The World Health Organization (WHO) emphasizes the importance of assessing HRQoL in PWH in its latest global health strategy on HIV [4], highlighting well‐being as a fundamental aspect and advocating for a person‐centred approach.

The HRQoL of PWH refers to their subjective perception of well‐being and life satisfaction. HRQoL can be influenced by multi‐dimensional factors, including physical and mental health, social support, stigma and discrimination, the impact of health on daily life activities, and subjective general health perception [5]. This subjective self‐evaluation has become an important measure in the clinical care of patients with chronic diseases and is included in the assessment of therapeutic interventions and cost‐effectiveness analyses, among other applications [6].

There is a growing interest worldwide, particularly in high‐income countries, in utilizing validated patient‐reported outcomes (PROMs) to assess the self‐reported HRQoL of PWH in clinical settings [7]. The 2023 revision of the European AIDS Clinical Society (EACS) guidelines also includes recommendations for the use of PROMs in HIV clinical care [8]. On an individual level, the routine use of PROMs such as quality of life and self‐reported symptoms improves clinical decision‐making, symptom recognition, patient–clinician communication, and the identification and addressing of quality of life‐related issues [9]. However, despite the potential benefits that such PROMs could offer to routine clinical care, this area remains in the developmental stage [10].

In this study, our aim was to assess the opinions of physicians attending PWH within the Spanish nationwide CoRIS cohort regarding the measurement of HRQoL, with the goal of identifying areas for improvement in healthcare practice.

METHODS

Study population

We included all physicians providing care for PWH from the centres participating in the CoRIS cohort. CoRIS is a prospective multicentre cohort comprising adult PWH, naive to antiretroviral treatment at study entry. Participants were recruited from 48 centres across 14 autonomous regions within the Spanish public healthcare system [11]. Two centres were excluded as they were neither enrolling new patients nor providing follow‐up data. Thus, at the time of the study, there were 225 physicians in CoRIS, distributed across 46 centres.

Questionnaire design and administration

An ad hoc questionnaire was designed, comprising 27 structured questions organized into four domains: (i) sociodemographic and clinical data; (ii) the perceived usefulness of measuring HRQoL; (iii) the need for information, training and resources for HRQoL measurement; and (iv) whether and how HRQoL should be measured. Questions in domains (ii) and (iii) were answered using a five‐point Likert scale. Questions in domain (iv) included both single‐choice and yes/no questions.

The online version of the questionnaire was evaluated by five physicians from CoRIS, and minor adjustments to the wording of questions were made based on their input. The final version of the questionnaire in Spanish is shown in the supplementary material (SM 1) and was estimated to take 5–7 min for completion. An English translation is also included in the supplementary material (SM 2).

The questionnaire was e‐mailed to all physicians on 2 April 2023, and responses were collected until June 2023. Physicians who did not respond received a reminder email. Responses were anonymized for the investigators analysing the data.

Statistical analysis

Descriptive analysis was conducted using frequency tables for categorical variables and median and interquartile range (IQR) for continuous variables. Differences in physicians' opinion by sex (male, female), age (<40, 40–55 and > 55 years), years of experience treating PWH (<15, 15–24 and ≥ 25) and the number of PWH followed up in the hospitals where they work (≤1000, >10 000) were assessed using the χ² test for independence for categorical variables. All statistical analyses were performed using Stata® software (version 17.0; Stata Corporation, College Station, TX, USA).

Ethics approval and informed consent

The CoRIS cohort was approved by the Clinical Research Ethics Committee of the Gregorio Marañón General University Hospital. All patients provided their consent to join CoRIS by signing an informed consent form. This particular study received approval from the Clinical Research Ethics Committee Carlos III Health Institute, Madrid, Spain (CEI PI 52 _2020‐v2_Enmienda 2020‐v2).

RESULTS

Of 225 physicians included in the study, 131 (58.2%) completed the questionnaire, of whom 61 (46.6%) were female. The median age of respondents was 52 years (IQR: 42–60), with 89 (67.9%) working in hospitals that followed up more than 1000 PWH, and they had been treating PWH for a median of 20 years (IQR: 12–30).

A total of 119 (90.9%) and 116 (88.6%%) physicians agreed that measuring HRQoL is beneficial for both patients and medical decision‐making, respectively. Furthermore, between 94 and 106 (72%–81%) stated that measuring HRQoL would encourage patients to engage in self‐care, enhance the physician–patient relationship, and contribute to holistic patient‐centred care. Additionally, 99 (75.6%) considered HRQoL measurement meaningless unless repeated over time. However, 56 (42.7%) physicians found measuring quality of life to be not useful due to a lack of resources needed to support individuals who report poor quality of life (Figure 1).

FIGURE 1.

Physicians' opinion about the usefulness of measuring health‐related quality of life (HRQoL).

Regarding the need for information, training and resources, 88 (67.2%) physicians expressed a need for training on what HRQoL is and how to measure it, while 104 (79.4%) required information on validated tools. Additionally, 106 (80.9%) agreed that clinical guidelines are necessary to establish a consensus on how, and how often, to measure HRQoL. Furthermore, 100 (76.9%) physicians stated that they were unable to measure HRQoL due to insufficient time during visits, attributed to heavy patient loads (Figure 2).

FIGURE 2.

Physicians' opinion about the need for information, training and resources to measure health‐related quality of life (HRQoL).

A total of 118 (90.1%) physicians concurred that HRQoL should be measured. Most (96; 82.7%) agreed that specific scales for PWH should be used, recommending an annual assessment frequency (74.1%). They suggested that HRQoL measurement be conducted by nurses from HIV units (49.1%), through personal interviews during medical visits (43.1%) or via mobile apps (32.8%). However, 97.4% believed that the patient's profile should guide the method selection for measuring HRQoL. At the time of the survey, 63 (55.3%) physicians did not assess HRQoL in any patients, primarily due to time or resource constraints (75.8%). Among the 51 physicians who evaluated HRQoL in some of their patients, 35.3% used personal interviews, and only 15.7% used validated scales for PWH (data not shown).

No significant differences were found in physicians' opinions by sex, age, years of experience in caring for PWH, or the number of PWH followed at their hospitals. However, a majority of physicians aged >55 years (56.8%) and/or those with ≥25 years of experience (60.0%) preferred personal interviews to measure HRQoL, while most physicians aged 40–55 years (44.9%) or with 15–24 years’ experience (45.7%) favoured mobile apps. Additionally, the percentage of physicians who evaluated the quality of life in any of their patients at the time of the survey was higher among older individuals (58.1%, 32.7% and 45.5% among physicians aged >55, 40–55 and <40 years, respectively) and among those with more years of experience (64.1%, 28.6% and 40.0% for ≥25, 15–24 and <15 years’ experience, respectively) (data not shown).

DISCUSSION

In this study, we examined physicians' opinions on measuring HRQoL among PWH. Clinicians generally concurred that assessing HRQoL could positively impact patient's overall well‐being, both clinically and personally. They emphasized the importance of training, resources and consensus among healthcare professionals regarding HRQoL assessment. However, more than half of the physicians reported not measuring HRQoL in any patients mainly due to time and resource constraints.

The majority of physicians agreed on the benefits of measuring HRQoL for patients and its utility in medical decision‐making. They also recognized its potential to promote patient self‐care, enhance the physician–patient relationship and contribute to holistic patient‐centred care. These findings align with prior research on the benefits of using PROMs in clinical practice, both generally [12] and specifically for HIV infection [13]. However, more than half of the physicians reported not integrating HRQoL measures into their routine medical care, mainly due to time constraints, heavy patient loads and inadequate support and resources. These barriers at the health provider level have also been identified in studies on integrating PROMs into routine general clinical practice [14], including contexts specific to HIV care [15]. However, the impact of measuring HRQoL on consultation times and physician workload may vary depending on the specific tool used. Previous studies suggest that integrating PROM feedback into clinical visits could streamline healthcare provider efforts, reduce workloads and improve efficiency by addressing patient concerns during consultations [16]. Nearly half of the physicians in our study indicated that HRQoL assessments could be conducted by nurses. This finding is consistent with a recent study in Spain, where a significant percentage of HIV‐specialized physicians proposed that PROM questionnaires could be administered by nursing staff or other trained healthcare personnel in facilities [17].

Physicians in our study expressed the need for training on HRQoL and its measurement methods. These findings highlight the necessity for professional training and are consistent with prior research, wherein healthcare professionals expressed concerns about the need for knowledge and skills regarding the appropriate implementation of PROMs, both in general practice [14] and in the care of PWH [13, 17]. A recent meta‐analysis revealed that the most commonly used instruments for assessing HRQoL in PWH are the WHO Quality of Life HIV Brief (WHOQOL‐HIV BREF) and the Medical Outcomes Study HIV (MOS‐HIV) [18]. As expressed in our survey, developing clinical practice guidelines on HRQoL measurement and using scales specifically designed for PWH could facilitate the integration of HRQoL assessments into clinical practice.

Most physicians agreed that HRQoL measurements are meaningful only when conducted with repeated assessments over time, and an annual assessment was their preferred option. In France, HIV healthcare providers suggested completing PROMs minimally before medical consultations and receiving alerts under specific conditions when problematic scores were detected [15]. Considering that Spanish guidelines recommend a hospital visit at least once a year [19], annual HRQoL assessments could be a suitable option that would balance current clinical routine care, resource availability and patient well‐being. This is consistent with the EACS guidelines, which advocate for the annual use of PROM tools for all individuals to facilitate dialogue between care providers and patients, enhance both patient and physician awareness of health status, promote patient‐centred care and empower patients in the decision‐making process [8].

In our study, no significant differences by sex, age or years of experience were observed in physicians' perspectives on the usefulness of measuring HRQoL and the need for information, training and resources. Among physicians who monitored HRQoL in their patients, the most frequently used tool was personal interviews. Younger physicians preferred mobile applications, consistent with prior studies highlighting the benefits of electronic systems for PROMs in both general healthcare settings [12] and HIV care specifically [13, 17]. The authors advocate for the combined use of both methods for routine HRQoL measurement, a practice supported by a prior study in Spain's HIV healthcare, which suggested using paper‐based PROMs for newly diagnosed cases to facilitate personalized conversations and electronic PROMs for PWH follow‐up visits to monitor progress [17]. It is worth noting that almost all physicians in our study agreed that the method to measure HRQoL should be tailored to the patient's profile. These proposals align with the EACS guidelines, which recommend integrating PROMs into electronic patient records using digital tools and emphasize the importance of providing support for individuals facing technological or language barriers, as they often have higher unmet needs [8].

To the best of our knowledge, this study represents the first comprehensive exploration of physicians' opinions on HRQoL measurement within the HIV healthcare setting in Spain, which extends beyond specific measurement tools and involves a substantial number of participants. Additionally, it integrates a global perspective on physicians' perceptions of HRQoL, along with their viewpoints stratified by sex, age and years of experience in managing PWH. However, our findings could be limited by a 41.8% non‐response rate. Also, we only assessed physicians' opinions and we did not include nurses or other healthcare workers, which in several settings can have an important role on the assessment of HRQoL. Moreover, we were unable to assess the perspectives of PWH regarding PROMs and HRQoL collection, which are crucial for developing effective, person‐centred care strategies.

CONCLUSIONS

In conclusion, while most physicians in Spain recognize the importance of measuring HRQoL in PWH, many encounter challenges such as time constraints, limited resources and insufficient training, which hinder its routine implementation. From the physicians’ perspective, establishing clear clinical guidelines and incorporating HRQoL scales specifically tailored for people living with HIV (PLWH) are essential for effectively measuring HRQoL. Additionally, involving other healthcare professionals, such as nurses, and utilizing digital tools can streamline the process, facilitating the integration of HRQoL assessments into routine care. This approach would ultimately improve patient outcomes and support holistic, patient‐centred care.

AUTHOR CONTRIBUTIONS

All authors were involved in the setting up of the cohort and contributed to its design. All authors were involved in data collection. IJ and IS‐G asked the research question presented in this paper and designed the study. IJ and JP designed the questionnaire. JP and CM‐S analysed the data. RI, IS‐G, TG and IJ wrote the first draft of the paper. All authors were involved in interpretation of the data and commented on interim drafts. All authors read and approved the final draft.

FUNDING INFORMATION

This study was funded by the Instituto de Salud Carlos III (PI20CIII/00027). CoRIS cohort is supported by CIBER (Consorcio Centro de Investigación Biomédica en Red; CB21/13/00091), Instituto de Salud Carlos III, Ministerio de Ciencia e Innovación and Unión Europea – NextGenerationEU.

CONFLICT OF INTEREST STATEMENT

NC‐C has received support for attending meetings and congresses and honoraria as a speaker for Gilead, ViiV Healtcare, Janssen and MSD. The remaining authors have no conflicts of interest to declare.

Supporting information

Data S1. Supporting information.

Izquierdo R, Suárez‐García I, Gómez‐García T, et al. Should we measure quality of life among people with HIV? A multicentre survey of physicians' opinions in Spain. HIV Med. 2025;26(2):308‐318. doi: 10.1111/hiv.13726