Patient-reported outcomes in daily clinical practise in HIV outpatient care

Kjær, Andreas; Rasmussen, Thomas A; Hjøllund, Niels Henrik; Rodkjær, Lotte Ørneborg; Storgaard, Merete

doi:10.1016/j.ijid.2018.02.015

Cited by 35 publications

(22 citation statements)

References 21 publications

(24 reference statements)

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“…Seven studies did not use reminders because the aim was to explore how patients interacted with the system without being reminded of it. 41,45,47,51,58,59,64 This included a French study of a self-assessment website for patients with rheumatoid arthritis (RA), 41 25.7 per cent of whom never accessed the website.…”

Section: Resultsmentioning

confidence: 99%

“…Only four studies described the characteristics of nonparticipants; 47,30,53,61 no studies included characteristics of dropouts. Robotham et al reported no difference between active participants and nonparticipants.…”

Section: Resultsmentioning

confidence: 99%

“…Five studies defined ‘health problem’ as patients feeling ‘too ill’ to participate. 24,35,45,47,55 Death was a reported reason for dropout in seven studies. Four studies reported ‘old age’ as a reason for patients to decline participation 11,21,30,53 without defining an age limit or explaining how age hindered engagement.…”

Section: Resultsmentioning

confidence: 99%

“…Three studies found that language barriers were a reason for dropout. 47,55,68 Several other studies used lack of sufficient language skills as exclusion criteria. An English study of a digital questionnaire for people with severe mental illness found that lack of clinical support was regarded as a reason for dropout.…”

Section: Resultsmentioning

confidence: 99%

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Patients’ reasons for non-use of digital patient-reported outcome concepts: A scoping review

Nielsen

Kidholm

Kayser

2020

Health Informatics J

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Data from digitally administered patient reported outcomes (PROs) is used more and more in routine healthcare for long-term conditions as a part of daily clinical practice. This literature study reviews empirical studies of digital PRO to examine patients’ reasons for non-use of digitally administered PRO data in routine care. This scoping review searched through PubMed, Embase, Web of Science and PsycINFO databases, reporting on study population, intervention, duration of intervention and motivational factors alongside stated reasons for nonparticipation or dropout for each study. The patients’ reasons for not participating, either from study start or by dropout, were analysed through a thematic approach. Fifty-one studies were included, published from 2010 to 2019, mostly from Europe and the Unites States covering different long-term conditions. The reasons for non-use are manifold and cover the themes of ability to use PRO, engagement, emotional distress and technical barriers. Several reasons are given explaining why patients with long-term conditions are not using digitally administered PRO as intended. This should be taken into account in the design phase of digital PRO interventions and considered in conversations with patients during the intervention.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

See 2 more Smart Citations

Patients’ reasons for non-use of digital patient-reported outcome concepts: A scoping review

Nielsen

Kidholm

Kayser

2020

Health Informatics J

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“…Those concerned with cancer care and trials have taken advantage of the advances in digital communications [ 8 ] to configure hospital computer systems and capture PRO data in real time to better reflect the patient experience [ 9 ] and facilitate intervention. Kjaer et al [ 10 ] described the hospital-based implementation of a web-based tool to facilitate the use of PROs in HIV care. They adapted AmbuFlex [ 11 ], a generic web-based program for the collection and synthesis of PRO data, envisaging that this platform could individualize patient care and inform targeted resource allocation, particularly with regard to the frequency of patient medical appointments.…”

Section: Introductionmentioning

confidence: 99%

Supporting Patient-Clinician Interaction in Chronic HIV Care: Design and Development of a Patient-Reported Outcomes Software Application

et al. 2021

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Background The consideration of health-related quality of life (HRQL) is a hallmark of best practice in HIV care. Information technology offers an opportunity to more closely engage patients with chronic HIV infection in their long-term management and support a focus on HRQL. However, the implementation of patient-reported outcome (PRO) measures, such as HRQL in routine care, is challenged by the need to synthesize data generated by questionnaires, the complexity of collecting data between patient visits, and the integration of results into clinical decision-making processes. Objective Our aim is to design and pilot-test a multimedia software platform to overcome these challenges and provide a vehicle to increase focus on HRQL issues in HIV management. Methods A multidisciplinary team in France and Australia conducted the study with 120 patients and 16 doctors contributing to the design and development of the software. We used agile development principles, user-centered design, and qualitative research methods to develop and pilot the software platform. We developed a prototype application to determine the acceptability of the software and piloted the final version with 41 Australian and 19 French residents using 2 validated electronic questionnaires, the Depression, Anxiety and Stress Scale-21 Items, and the Patient Reported Outcomes Quality of Life-HIV. Results Testing of the prototype demonstrated that patients wanted an application that was intuitive and without excessive instruction, so it felt effortless to use, as well as secure and discreet. Clinicians wanted the PRO data synthesized, presented clearly and succinctly, and clinically actionable. Safety concerns for patients and clinicians included confidentiality, and the potential for breakdown in communication if insufficient user training was not provided. The final product, piloted with patients from both countries, showed that most respondents found the application easy to use and comprehend. The usability testing survey administered found that older Australians had reduced scores for understanding the visual interface (P=.004) and finding the buttons organized (P=.02). Three-fourths of the respondents were concerned with confidentiality (P=.007), and this result was more prevalent in participants with higher anxiety and stress scores (P=.01), as measured by the Depression, Anxiety and Stress Scale-21 Items. These statistical associations were not observed in 15 French patients who completed the same questionnaire. Conclusions Digital applications in health care should be safe and fit for purpose. Our software was acceptable to patients and shows potential to overcome some barriers to the implementation of PROs in routine care. The design of the clinicians’ interface presents a solution to the problem of voluminous data, both synthesizing and providing a snapshot of longitudinal data. The next stage is to conduct a randomized controlled trial to determine whether patients experience increased satisfaction with care and whether doctors perceive that they deliver better clinical care without compromising efficiency.

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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

et al. 2022

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The PROgress study assessed the value and feasibility of implementing web-based patient-reported outcomes assessments (PROs) within routine HIV care at two North American outpatient clinics. People with HIV (PWH) completed PROs on a tablet computer in clinic before their routine care visit. Data collection included PROs from 1632 unique PWH, 596 chart reviews, 200 patient questionnaires, and 16 provider/staff questionnaires. During an initial setup phase involving 200 patients, PRO results were not delivered to providers; for all subsequent patients, providers received PRO results before the consultation. Chart review demonstrated that delivery of PRO results to providers improved patient-provider communication and increased the number of complex health and behavioral issues identified, recorded, and acted on, including suicidal ideation (88% with vs 38% without PRO feedback) and anxiety (54% with vs 24% without PRO feedback). In post-visit questionnaires, PWH (82%) and providers (82%) indicated that the PRO added value to the visit.

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Patient-reported outcomes in daily clinical practise in HIV outpatient care

Cited by 35 publications

References 21 publications

Patients’ reasons for non-use of digital patient-reported outcome concepts: A scoping review

Patients’ reasons for non-use of digital patient-reported outcome concepts: A scoping review

Supporting Patient-Clinician Interaction in Chronic HIV Care: Design and Development of a Patient-Reported Outcomes Software Application

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

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