Health system capacity to report on indicators fostering integrated people-centred HIV care: findings from six European countries

Abstract

Introduction: Effective antiretroviral treatment has greatly increased life expectancy for people living with HIV (PLHIV). However, PLHIV have higher levels of multimorbidity than the general population. Integrated people-centred health services are needed to effectively manage non-AIDS comorbidities and to achieve good health-related quality of life (HRQoL). This study assesses national health system capacity to monitor indicators that are relevant to the changing focus of HIV care. Methods: Through desk research and expert consultation we determined that health-related concerns for PLHIV in Europe include certain non-AIDS comorbidities, HRQoL, discrimination within health systems and unmet psychosocial needs. We created a 56-item English-language survey to assess whether health systems currently report on these issues as part of routine HIV monitoring or whether they have the capacity to do so. One leading HIV expert completed the survey in each of six countries: Estonia, Italy, the Netherlands, Slovenia, Sweden and Turkey. Data collection took place in April–June 2018. We compiled results in Microsoft Excel and performed descriptive analyses. Results: Bone loss, cardiovascular disease, drug dependence, non-AIDS malignancies and renal disease were reported to be the most comprehensively monitored comorbidities (Table 1). Five countries could potentially report on leading causes of death among PLHIV, while two could potentially report on leading causes of hospital admission (data not shown). Respondents from three countries indicated capacity to report on the HRQoL of PLHIV. Two countries could report on the percentage of PLHIV denied health services because of HIV status, while none appeared to have indicators for monitoring psychosocial service provision. Discussion: National HIV monitoring programmes across study countries have greater capacity to report on some non-AIDS comorbidities than others. The conditions that are most widely monitored may be those for which monitoring could be expanded most easily in other countries. However, not monitoring conditions which may be harder to document (e.g. chronic pain syndrome and depression) risks overlooking problems that may greatly affect the well-being of PLHIV. Conclusions: Study countries collectively have prominent monitoring gaps across key domains of HIV care including comorbidities, HRQoL, psychosocial services and discrimination within health systems. Careful prioritisation is warranted in regard to which indicators should be utilised, with consideration given to monitoring those with the greatest impact on HRQoL, minimising the reporting burden and aligning data collection with current monitoring in other disease areas. Lessons learned: Our survey instrument is an effective tool for gathering information about national capacity to report on indicators relating to comorbidities and people-centred health services in the context of HIV care. Limitations: We did not confirm the accuracy of data reported in surveys. Having data from only six countries limits the generalisability of study findings. Suggestions for future research: Collecting data from a larger number of countries would provide evidence to guide decision-making about which indicators should be incorporated into national and regional HIV monitoring throughout Europe in order to support efforts to meet the long-term healthcare needs of the region’s PLHIV in an integrated manner.

Keywords

• comorbidities
• health systems monitoring
• hiv
• integrated care