Patient-Reported Outcomes (PROs) in HIV Infection: Points to Consider and Challenges

Antela, Antonio; Bernardino, José I; Quirós, Juan Carlos López-Bernaldo de; Bachiller, P; Fuster‐RuizdeApodaca, María José; Rodríguez, Silvia; Castrejón, Isabel; Álvarez, Beatriz; Hermenegildo, Marta

doi:10.1007/s40121-022-00678-w

Cited by 2 publications

(3 citation statements)

References 66 publications

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“…Only about a quarter of these could be considered standard of care in their clinical environments, suggesting that routine collection of PRO data is not well-integrated across HIV care settings [144,145]. Nevertheless, these initiatives spanned 19 countries, with half led in North America.…”

Section: Discussionmentioning

confidence: 99%

“…This rapid scoping review found 60 published initiatives (2007–2022) that clinically administered PROMs to inform the individual management of patients with HIV. Only about a quarter of these could be considered standard of care in their clinical environments, suggesting that routine collection of PRO data is not well‐integrated across HIV care settings [144, 145]. Nevertheless, these initiatives spanned 19 countries, with half led in North America.…”

Section: Discussionmentioning

confidence: 99%

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Patient‐reported outcome measures in adult HIV care: A rapid scoping review of targeted outcomes and instruments used

Engler,

Avallone,

Cadri

et al. 2024

HIV Medicine

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ObjectiveThere is international interest in the integration of patient‐reported outcome measures (PROMs) into routine HIV care, but little work has synthesized the content of published initiatives. We conducted a rapid scoping review primarily to identify their selected patient‐reported outcomes and respective instruments.MethodsFour databases were searched on 4 May 2022 (Medline, Embase, CINAHL and PsychINFO) for relevant English language documents published from 2005 onwards. Dual review of at least 20% of records, full texts and data extraction was performed. Outcomes and instruments were classified with an adapted 14‐domain taxonomy. Instruments with evidence of validation were described.ResultsOf 13 062 records generated for review, we retained a final sample of 94 documents, referring to 60 distinct initiatives led mostly in the USA (n = 29; 48% of initiatives), Europe (n = 16; 27%) and Africa (n = 9; 15%). The measured patient‐reported outcome domains were: mental health (n = 42; 70%), substance use (n = 23; 38%), self‐management (n = 16; 27%), symptoms (n = 12; 20%), sexual/reproductive health (n = 12; 20%), physical health (n = 9; 15%), treatment (n= 8; 13%), cognition (n = 7; 12%), quality of life (n = 7; 12%), violence/abuse (n = 6; 10%), stigma (n = 6; 10%), socioeconomic issues (n = 5; 8%), social support (n = 3; 5%) and body/facial appearance (n = 1; 2%). Initiatives measured 2.6 outcome domains, on average (range = 1–11). In total, 62 distinct validated PROMs were identified, with 53 initiatives (88%) employing at least one (M = 2.2). Overwhelmingly, the most used instrument was any version of the Patient Health Questionnaire to measure symptoms of depression, employed by over a third (26; 43%) of initiatives.ConclusionPublished PROM initiatives in HIV care have spanned 19 countries and disproportionately target mental health and substance use.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Patient‐reported outcome measures in adult HIV care: A rapid scoping review of targeted outcomes and instruments used

Engler,

Avallone,

Cadri

et al. 2024

HIV Medicine

View full text Add to dashboard Cite

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“…Persons living with HIV valued the use of PROMS (even without validation) viewing them as a contribution and useful for individualized care, whereas health professionals expressed negative impressions of PROM use citing an excessive number of PROMs and lack of time to administer. 44 These impressions may extend to community settings with limited resources, space, and personnel. Ultimately, having buy-in from all stakeholders will be critical for SF-HDQ uptake and use in community settings.…”

Section: Discussionmentioning

confidence: 99%

Short-Form HIV Disability Questionnaire Sensibility, Utility, and Implementation Considerations in Community-Based Settings: A Mixed Methods Study

O’Brien,

Ibáñez-Carrasco,

Solomon

et al. 2023

J Int Assoc Provid AIDS Care

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Purpose: We assessed the sensibility, utility, and implementation considerations of the Short-Form HIV Disability Questionnaire (SF-HDQ) in community-based settings. Methods: We conducted a mixed-methods study with adults living with HIV and community providers in seven community sites in Canada. We administered the SF-HDQ, a sensibility questionnaire and conducted semi-structured interviews. The SF-HDQ was sensible if median scores were ≥5/7(adults living with HIV) and ≥4/7(community providers) for ≥80% of the sensibility questionnaire items. Qualitative interview data were analyzed using content analysis. Results: Median sensibility scores were ≥5 for adults living with HIV (n = 44) and ≥4 for community providers (n = 10) for 95% and 100% of items, respectively. The SF-HDQ is comprehensive, represented disability, captured its episodic nature, and was easy to complete. Community utility included: facilitating communication and engagement with community; taking a snapshot of disability and tracking changes over time; guiding referrals; fostering self-reflection; and informing community programs. Considerations for implementation included flexible, person-centered approaches to mode and processes of administration, and communicating scores based on personal preferences among persons living with HIV. Conclusion: The SF-HDQ possesses sensibility and utility for use in community-based settings.

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Patient-Reported Outcomes (PROs) in HIV Infection: Points to Consider and Challenges

Cited by 2 publications

References 66 publications

Patient‐reported outcome measures in adult HIV care: A rapid scoping review of targeted outcomes and instruments used

Patient‐reported outcome measures in adult HIV care: A rapid scoping review of targeted outcomes and instruments used

Short-Form HIV Disability Questionnaire Sensibility, Utility, and Implementation Considerations in Community-Based Settings: A Mixed Methods Study

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