scholarly journals Acceptability of a Patient Portal (Opal) in HIV Clinical Care: A Feasibility Study

2021 ◽  
Vol 11 (2) ◽  
pp. 134
Author(s):  
Dominic Chu ◽  
Tibor Schuster ◽  
David Lessard ◽  
Kedar Mate ◽  
Kim Engler ◽  
...  
Keyword(s):  
Feasibility Study ◽  
Clinical Care ◽  
Health Centre ◽  
Healthcare Providers ◽  
Patient Reported Outcome Measures ◽  
Hiv Care ◽  
People Living With Hiv ◽  
Patient Portal ◽  
Cross Sectional ◽  
Patient Reported

Opal (opalmedapps.com), a patient portal in use at the Cedars Cancer Centre of the McGill University Health Centre (MUHC) (Montreal, Canada), gives cancer patients access to their medical records, collects information on patient-reported outcome measures (PROMs), and has demonstrated patient satisfaction with care. This feasibility study aims to evaluate Opal’s potential acceptability in the context of HIV care. People living with HIV (PLWH) and their healthcare providers (HCPs) completed cross-sectional surveys from August 2019 to February 2020 at large HIV centers, including the Chronic Viral Illness Service of the MUHC, and other HIV clinical sites in Montreal and Paris, France. This study comprised 114 PLWH (mean age 48 years old, SD = 12.4), including 74% men, 24% women, and 2% transgender or other; and 31 HCPs (mean age 46.5 years old, SD = 11.4), including 32% men, 65% women, and 3% other. Ownership of smartphones and tablets was high (93% PLWH, 96% HCPs), and participants were willing to use Opal (74% PLWH, 68% HCPs). Participants were interested in most Opal functions and PROMs, particularly PROMs capturing quality of life (89% PLWH, 77% HCPs), experience of healthcare (86% PLWH, 97% HCPs), and HIV self-management (92% PLWH, 97% HCPs). This study suggests Opal has high acceptability and potential usefulness as perceived by PLWH and HCPs.

scholarly journals Treatment Challenges, Priorities, and Relationship with Healthcare Providers in HIV Care: A Cross-Sectional Survey of Portuguese Adults Living with HIV

2020 ◽  
Vol 8 (3) ◽  
pp. 282
Author(s):  
Antonio Antunes ◽  
Ines Augusto ◽  
Patricia Parada ◽  
Chinyere Okoli ◽  
Ama Appiah ◽  
...  
Keyword(s):  
Side Effects ◽  
Healthcare Providers ◽  
World Health ◽  
Hiv Care ◽  
People Living With Hiv ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Related Quality ◽  
Long Acting ◽  
Living With Hiv

BACKGROUND: The World Health Organization’s definition of health focuses on health-related quality of life in all domains, not just the “absence of disease or infirmity”. We investigated various treatment challenges among People living with HIV (PLHIV) in Portugal.METHODS: We analyzed data for n=60 adult PLHIV with a confirmed diagnosis and on anti-retroviral therapy (ART) who participated in the 2019 Positive Perspectives Survey. Descriptive analyses were performed using R Version 3.6.1.RESULTS: Most participants were virally suppressed (97%), male (67%); <50 years (51%); and had ≥1 non-HIV comorbidity (70%). Overall, 15% reported trouble swallowing pills, 35% experienced ART side effects, 22% felt daily oral ART limited their life, 25% were stressed by their dosing schedule, 33% said daily oral dosing cued bad memories, while 63% said daily dosing reminded them of their HIV. These challenges were associated with treatment-avoidance behaviors; PLHIV reported missing ≥1 ART dose within the past month because of food requirements 27%, side effects 12%, concerns about long-term ART impacts 10%, and problems swallowing 5%. Overall, 73% were open to taking long-acting, nondaily ART if they remained virologically controlled. Only 35% overall perceived no communication barriers with their HCPs; these individuals had higher prevalence of optimal physical (86% vs. 49%, p=0.011) and mental health (86% vs. 36%, p<0.001) than those with a perceived barrier.CONCLUSION: For some PLHIV, taking pills daily was linked with diverse emotional challenges, including pill fatigue and anxiety. Clinicians should consider patient preferences when prescribing ART and engage PLHIV in treatment decisions.

Exploration of the use and impact of patient-reported experience measures (PREMs) in oncology settings: A systematic review.

2020 ◽  
Vol 38 (29_suppl) ◽  
pp. 166-166
Author(s):  
Olivia Cook ◽  
Yunyun Daiyan ◽  
Ladan Yeganeh ◽  
Amy Georgina Davies ◽  
Alastair Kwok ◽  
...  
Keyword(s):  
Systematic Review ◽  
Service Providers ◽  
Clinical Care ◽  
National Level ◽  
Information Provision ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Service Improvement ◽  
Cross Sectional ◽  
Patient Reported

166 Background: In addition to patient-reported outcome measures, the use of patient-reported experience measures (PREMs) is also developing as a patient-centred method for evaluating health performance. PREMs are tools that measure patients’ experience of health care including accessibility, the physical environment of services, and their interactions with health service providers and clinicians. This systematic review aimed to explore the use and impact of PREMs in the clinical care of cancer patients and survivors. Methods: This systematic review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses. An a priori protocol was established and systematic searches of major databases (CINAHL, Medline, PsycINFO, Ovid Emcare and Scopus) were conducted between 2009 and 2019. Quantitative studies of adult or paediatric populations were eligible for inclusion. Articles reporting patient satisfaction only were excluded. Quality appraisal was conducted using the Johanna Briggs Institute Critical Appraisal Tools. A narrative synthesis of findings was conducted. Results: A total of 3246 articles were screened for eligibility with 45 studies included in the systematic review. The majority of included studies (n=37) were cross-sectional in design with a variety of PREMs used, most commonly the National Cancer Patient Experience Survey. Most studies were assessed as ‘moderate’ to ‘high’ for quality. Studies were categorised according to the use of the PREM with the majority (n=40) utilising a PREM to evaluate cancer services at the service or national level, and five using a PREM to evaluate a specific clinical intervention. Various gaps in care were identified across studies highlighting areas for improvement such as time to diagnosis and information provision. Few studies reported the barriers or enablers to PREM collection or discussed service improvement initiatives arising from them. Conclusions: Whilst PREM collection is becoming more common in oncology settings, the use and impact of this valuable data is not well reported. Patients willingly share their experiences of oncology care, yet planned or complete actions resulting from the data to improve care are seldom reported. The collection of PREMs should be met with a commitment to service improvement and longitudinal collection of PREMs is recommended to evaluate quality improvement initiatives.

scholarly journals Patient-reported outcome measures obtained via E-Health tools ease the assessment burden and encourage patient participation in cancer care (PaCC Study)

2021 ◽  
Author(s):  
Nicole Erickson ◽  
T. Schinkoethe ◽  
C. Eckhardt ◽  
L. Storck ◽  
A. Joos ◽  
...  
Keyword(s):  
Outcome Measures ◽  
Patient Participation ◽  
Cancer Care ◽  
Clinical Care ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Nutrition Status ◽  
Pancreatic Tumors ◽  
Cross Sectional ◽  
Patient Reported

Abstract Patient-reported outcome measures obtained via E-Health tools ease the assessment burden and encourage patient participation in cancer care (PaCC Study) Background E-health based patient-reported outcome measures (PROMs) have the potential to automate early identification of both nutrition status and distress status in cancer patients while facilitating treatment and encouraging patient participation. This cross-sectional study assessed the acceptability, accuracy, and clinical utility of PROMs collected via E-Health tools among patients undergoing treatment for stomach, colorectal, and pancreatic tumors. Results Eight-nine percent mostly, or completely, agreed that PROMs via tablets should be integrated in routine clinical care. Men were significantly more likely to require help completing the questionnaires than women (inv.OR= 0.51, 95% CI=(0.27, 0.95), p = 0.035). The level of help needed increased by 3% with each 1-year increase in age (inv. OR=1.03, 95% CI=(1.01, 1.06), p = 0.013). On average, a patient tended to declare weight which was 0.84 kg inferior to their true weight (Bland and Altman 95 % CI=(-3.9, 5.6); SD: 2.41) and a height which was 0.95 cm superior to their true height (Bland and Altman 95 % CI=(−5, 3.1); SD 2.08). Patient-reported nutrition status was significantly associated with the professionally generated assessment (95% CI=(2.27, 4.15), p < 0.001). As nutrition status declined, the distress score increased (95%CI=(0.88, 1.68), p < 0.001). Of the patients, 48.8% who were both distressed and malnourished requested supportive care to address their problems. Conclusion Patient-reported assessments utilizing E-health tools are an accurate and efficient method to encourage patient participation in cancer care while simultaneously ensuring that regular assessment of psycho-social and nutritional aspects of care are efficiently integrated in the daily clinical routine.

scholarly journals Patient-led use of patient-reported outcome measure in self-Management of a Rotator Cuff Injury

2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Maria J. Santana ◽  
Darrell J. Tomkins
Keyword(s):  
Rotator Cuff ◽  
Healthcare Providers ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Self Management ◽  
Care Organization ◽  
Surgical Interventions ◽  
Patient Reported ◽  
Rotator Cuff Injury ◽  
Dash Questionnaire

Abstract Introduction The patient is the person who experiences both the processes and the outcomes of care. Information held by the patient is vital for clinical and self-management, improving health outcomes, delivery of care, organization of health systems, and formulation of health policies. Patient-reported outcome measures (PROMs) play an important role in supporting patient’s self-management. This narrative describes a patient-led use of a PROM to self-manage after a rotator cuff injury. Methods This is a narrative of a patient who tore the supraspinatus tendon in her right shoulder in an accident. The Disabilities of the Arm, Shoulder and Hand, the DASH questionnaire, was used to monitor and self-manage recovery after the accident. The DASH questionnaire is a self-reported questionnaire that measures the difficulty in performing upper extremity activities and pain in the arm, shoulder or hand. It has been widely used in research studies, but here the patient initiated its use for self-management while waiting for and after rotator cuff surgery. The patient created separate sub-scale scores for function and for pain to answer questions from healthcare providers about her recovery. Results There was noticeable improvement over 3 months of conservative treatment, from a high level of disability of 56 to 39 (score changed 17); however, the scores were nowhere near the general population normative score of 10.1. Surgery improved the score from 39 pre-surgery to 28. Post-surgical interventions included physiotherapy, pain management and platelet-riched plasma treatment (PRP). The score was 14 4 weeks post-PRP. Conclusions The patient found the DASH useful in monitoring recovery from a rotator cuff injury (before and after surgery). The DASH contributed to communication with healthcare professionals and supported the clinical management. The DASH questionnaire was able to capture the patient’s experience with the injury and surgical recovery, corroborating an improvement in function while there was persistent post-surgical pain.

scholarly journals Changes in quality of life (QoL) and other patient-reported outcome measures (PROMs) in living-donor and deceased-donor kidney transplant recipients and those awaiting transplantation in the UK ATTOM programme: a longitudinal cohort questionnaire survey with additional qualitative interviews

BMJ Open ◽  
2021 ◽  
Vol 11 (4) ◽  
pp. e047263
Author(s):  
Andrea Gibbons ◽  
Janet Bayfield ◽  
Marco Cinnirella ◽  
Heather Draper ◽  
Rachel J Johnson ◽  
...  
Keyword(s):  
Kidney Transplant ◽  
Outcome Measures ◽  
Deceased Donor ◽  
Patient Reported Outcome Measures ◽  
Transplant Recipients ◽  
Kidney Transplant Recipients ◽  
Structured Interviews ◽  
Cross Sectional ◽  
Post Transplant ◽  
Patient Reported

ObjectiveTo examine quality of life (QoL) and other patient-reported outcome measures (PROMs) in kidney transplant recipients and those awaiting transplantation.DesignLongitudinal cohort questionnaire surveys and qualitative semi-structured interviews using thematic analysis with a pragmatic approach.SettingCompletion of generic and disease-specific PROMs at two time points, and telephone interviews with participants UK-wide.Participants101 incident deceased-donor (DD) and 94 incident living-donor (LD) kidney transplant recipients, together with 165 patients on the waiting list (WL) from 18 UK centres recruited to the Access to Transplantation and Transplant Outcome Measures (ATTOM) programme completed PROMs at recruitment (November 2011 to March 2013) and 1 year follow-up. Forty-one of the 165 patients on the WL received a DD transplant and 26 received a LD transplant during the study period, completing PROMs initially as patients on the WL, and again 1 year post-transplant. A subsample of 10 LD and 10 DD recipients participated in qualitative semi-structured interviews.ResultsLD recipients were younger, had more educational qualifications and more often received a transplant before dialysis. Controlling for these and other factors, cross-sectional analyses at 12 months post-transplant suggested better QoL, renal-dependent QoL and treatment satisfaction for LD than DD recipients. Patients on the WL reported worse outcomes compared with both transplant groups. However, longitudinal analyses (controlling for pre-transplant differences) showed that LD and DD recipients reported similarly improved health status and renal-dependent QoL (p<0.01) pre-transplant to post-transplant. Patients on the WL had worsened health status but no change in QoL. Qualitative analyses revealed transplant recipients’ expectations influenced their recovery and satisfaction with transplant.ConclusionsWhile cross-sectional analyses suggested LD kidney transplantation leads to better QoL and treatment satisfaction, longitudinal assessment showed similar QoL improvements in PROMs for both transplant groups, with better outcomes than for those still wait-listed. Regardless of transplant type, clinicians need to be aware that managing expectations is important for facilitating patients’ adjustment post-transplant.

scholarly journals The Correlation of Communication Effectiveness and Patient Satisfaction

2021 ◽  
Vol 8 ◽  
pp. 237437352199883
Author(s):  
Yvonne Versluijs ◽  
Maartje Lemmers ◽  
Laura E. Brown ◽  
Amanda I. Gonzalez ◽  
Joost T. P. Kortlever ◽  
...  
Keyword(s):  
Pain Intensity ◽  
Patient Reported Outcome Measures ◽  
Cross Sectional Study ◽  
Patient Reported Outcome ◽  
Communication Effectiveness ◽  
Cross Sectional ◽  
Patient Reported ◽  
Ceiling Effects ◽  
As Relationship ◽  
Current Experience

This study assessed the correlation of 9 questions addressing communication effectiveness (the Communication Effectiveness Questionnaire [CEQ]) with other patient-reported experience measures (PREMs; satisfaction, perceived empathy) as well as patient-reported outcome measures (PROMs; pain intensity, activity tolerance) in patients with musculoskeletal illness or injury. In a cross-sectional study, 210 patients visiting an orthopedic surgeon completed the CEQ and measures of satisfaction with the visit, perceived empathy, pain intensity, and activity tolerance. We evaluated correlations between CEQ and other PREMs and CEQ and PROMs. We measured ceiling effects of the PREMs. Communication effectiveness correlated moderately with other PREMs such as satisfaction (ρ = 0.54; P < .001) and perceived empathy (ρ = 0.54; P < .001). Communication effectiveness did not correlate with PROMs: pain intensity (ρ = −0.01; P = .93) and activity tolerance (ρ = −0.05; P = .44). All of the experience measures have high ceiling effects: perceived empathy 37%, satisfaction 80%, and CEQ 46%. The observation of notable correlations of various PREMs, combined with their high ceiling effects, direct us to identify a likely common statistical construct (which we hypothesize as “relationship”) accounting for variation in PREMs, and then develop a PREM which measures that construct in a manner that results in a Gaussian distribution of scores. At least within the limitations of current experience measures, there seems to be no association between illness (PROMs) and experience (PREMs).

scholarly journals Patient-reported experience and outcomes from orthodontic treatment

2020 ◽  
Vol 47 (2) ◽  
pp. 107-115
Author(s):  
Elizabeth Bradley ◽  
Andrew Shelton ◽  
Trevor Hodge ◽  
David Morris ◽  
Hilary Bekker ◽  
...  
Keyword(s):  
Secondary Care ◽  
Orthodontic Treatment ◽  
Clinical Care ◽  
Patient Treatment ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Fixed Appliance ◽  
Treatment Experience ◽  
Patient Reported ◽  
Pre Treatment

Objective: To measure patient-reported impact of orthodontic treatment in terms of pre-treatment concerns, treatment experience and treatment outcome. Setting: Four sites in Yorkshire, including two secondary care settings (Leeds Dental Institute and St Luke’s Hospital, Bradford) and two specialist orthodontic practices. Design: Cross-sectional survey. Participants: NHS orthodontic patients (aged 12+ years) who have completed comprehensive orthodontic treatment, excluding orthognathic surgery and craniofacial anomalies. Methods: Participants were opportunistically identified by the direct clinical care team during scheduled appointments and those eligible were invited to participate. Data were collected using the Orthodontic Patient Treatment Impact Questionnaire (OPTIQ), a validated 12-item measure with questions relating to pre-treatment experience, impact of treatment and outcome from treatment. Results: Completed questionnaires for analysis included 120 from primary care and 83 from secondary care. The most common pre-treatment concerns were alignment (89%) and being embarrassed to smile (63%). The most common expectations from orthodontic treatment were improved confidence to eat (87%) and smile (72%) in front of others, improved appearance of teeth (85%) and reduced teasing/bullying (63%). Only 67% respondents recalled receiving written information and the lowest recall related to retainer type and length of retention. The most commonly reported complications were sore mouth (68%), fixed appliance breakage (61%) and gingivitis (39%). Treatment caused greatest impact in relation to pain, limitations in eating and effect on speech. Overall satisfaction with orthodontic treatment was reported by 96% of respondents, 87% would have orthodontic treatment again (if needed) and 91% would recommend treatment to a friend. Conclusions: The OPTIQ is a useful patient-reported tool to identify pre-treatment concerns and expectations, treatment experience and outcome. Orthodontic treatment leads to high levels of satisfaction.

scholarly journals Psychosocial Determinants of HIV Stigma among Men Who Have Sex with Men in San Francisco, California

2021 ◽  
Vol 18 (15) ◽  
pp. 8031
Author(s):  
Dharma N. Bhatta ◽  
Jennifer Hecht ◽  
Shelley N. Facente
Keyword(s):  
Mental Health ◽  
San Francisco ◽  
Age Groups ◽  
Hiv Stigma ◽  
Hiv Care ◽  
People Living With Hiv ◽  
Cross Sectional ◽  
Adjusted Risk ◽  
Sex With Men ◽  
Living With Hiv

Background: Stigma and discrimination are major challenges faced by people living with HIV (PLWH), and stigma continues to be prevalent among PLWH. We conducted a cross-sectional study of 584 men who have sex with men (MSM) living with HIV between July 2018 and December 2020, designed to better understand which demographic and behavioral characteristics of MSM living with HIV in San Francisco, California are associated with experience of stigma, so that programs and initiatives can be tailored appropriately to minimize HIV stigma’s impacts. Methods: This analysis was conducted with data from San Francisco AIDS Foundation (SFAF) encompassing services from multiple different locations in San Francisco. Data about the level of HIV-related stigma experienced were collected through a single question incorporated into programmatic data collection forms at SFAF as part of the client record stored in SFAF’s electronic health record. We performed linear regression to determine the associations between self-reported experiences of HIV stigma and other characteristics among MSM living with HIV. Results: HIV stigma was low overall among MSM living with HIV who are actively engaged in HIV care in San Francisco; however, it was significantly higher for the age groups of 13–29 years (adjusted risk difference (ARD): 0.251, 95% CI: 0.012, 0.489) and 30–49 years (ARD: 0.205, 95% CI: 0.042, 0.367) when compared to the age group of 50 years and older, as well as people who were homeless (ARD: 0.844, 95% CI: 0.120, 1.568), unstably housed (ARD: 0.326, 95% CI: 0.109, 0.543) and/or having mental health concerns (ARD: 0.309, 95% CI: 0.075, 0.544), controlling for race, injection history, and viral load. Conclusions: These findings highlight an opportunity to develop culturally, socially, and racially appropriate interventions to reduce HIV stigma among MSM living with HIV, particularly for younger men and those struggling with housing stability and/or mental health.

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