Feasibility of implementing a same-day electronic screening tool for clinical assessment to measure patient-reported outcomes for eliciting actionable information on adherence to HIV medication and related factors in a busy Canadian urban HIV clinic

Background: An optimal adherence to antiretroviral therapy (ART) is fundamental for suppression of HIV viral load and favourable treatment outcomes. Patient-reported outcomes (PROs) are effective tools for improving patient–provider communication and focusing providers’ awareness on current health problems. The objectives of this analysis were (1) to determine the feasibility of implementing an electronic screening tool to measure PROs in a Canadian HIV clinic to obtain information on ART adherence and related factors and (2) to determine the factors related to sub-optimal adherence. Methods: This implementation research with a convenience sample of 600 people living with HIV (PLWH) was conducted in a busy, academic, urban HIV clinic in Toronto, Canada. PLWH were approached to participate in PRO assessments just prior to their in-clinic appointments, including health-related domains such as mental health, housing, nutrition, financial stress and medication adherence, and responses were summarized on a single sheet available for providers to review. Feasibility of implementing PROs was assessed by quantifying response rate, completion rate, time taken and participation rate. Medication adherence was elicited by self-report of the percentage of prescribed HIV medications taken in the last month. Unadjusted and adjusted odds ratios were estimated from logistic regression models to identify factors associated with adherence of <95%. Results: Of the 748 PLWH invited to participate, 692 (participation rate: 92.5%) completed the PRO assessments as standard of care in clinic. Of these, 600 consented to the use of their PRO results for research and were included in this analysis. The average response rate to the ART-related questions was 96.8% and mean completion rate was 95.5%. The median time taken to complete the assessment was 12.0 (IQR = 8.4–17.3) min, adjusted 8.7 (IQR = 7.2–10.8) min. 445 (74.9%) of participants were male, and 153 (26.2%) reported dissatisfaction with ART. 105 (19.7%) of the PLWH reported ART adherence of <95%. Multivariable logistic regression identified the following risk factors for sub-optimal adherence: dissatisfaction with ART (OR = 2.30, 95% CI 1.38–3.83), not having a family doctor or not visiting a family doctor in last year (OR = 1.69, 95% CI 1.02–2.79). Conclusion: Collecting self-reported health information from PLWH through PROs in a busy urban clinic was feasible and can provide relevant information to healthcare providers on issues related to adherence. This has a potential to help in individualizing ambulatory care.

Download Full-text

Patient-Reported Outcomes Associated With Sedation and Agitation Intensity in the Critically Ill

American Journal of Critical Care ◽

10.4037/ajcc2020592 ◽

2020 ◽

Vol 29 (2) ◽

pp. 140-144

Author(s):

Ashleigh Malinowski ◽

Neal J. Benedict ◽

Meng-Ni Ho ◽

Levent Kirisci ◽

Sandra L. Kane-Gill

Keyword(s):

Intensive Care Unit ◽

Mechanical Ventilation ◽

Intensive Care ◽

Patient Reported Outcomes ◽

Surgical Trauma ◽

Related Factors ◽

Patient Reported ◽

Sedation And Analgesia ◽

Patients Experience

Background Patient-reported outcomes are essential to understand the relationship between patients’ perception of sedation and clinicians’ assessments of sedation. Objectives To evaluate the association between sedation and agitation indexes and patient-reported outcomes of sedation and analgesia. Methods This prospective, single-center, observational study included adult patients who were continuously sedated for at least 24 hours in a medical or surgical/ trauma intensive care unit. Patients were interviewed after sedation was discontinued regarding their satisfaction with the quality of sedation and potentially related factors. The primary outcome was the correlation between sedation and agitation indexes and patient-reported outcomes. Results A total of 68 patients were interviewed after sedation. Of these, 29 (42.6%) described their overall feelings about their experience while receiving mechanical ventilation in the intensive care unit as "pleasant". When asked about their desires if they were to experience the situation again, 29 patients (42.6%) reported that they would want more sedation. Agitation index was statistically significantly correlated with several patient-reported outcomes. Receiving mechanical ventilation (r = 0.41, P = .002), the amount of noise (r = 0.34, P = .01), suctioning (r = 0.32, P = .02), difficulty resting or sleeping (r = 0.39, P = .003), inability to communicate by talking (r = 0.36, P = .008), anxiety (r = 0.29, P = .03), panic (r = 0.3, P = .02), and frustration (r = 0.47, P < .001) were associated with a higher agitation index. Conclusion Agitation index was significantly associated with several patient-reported outcomes and thus seems to be a promising descriptor of patients’ experience.

Download Full-text

The Prevalence of Dental Implants and Related Factors in Patients with Sjögren Syndrome: Results from a Cohort Study

The Journal of Rheumatology ◽

10.3899/jrheum.151167 ◽

2016 ◽

Vol 43 (7) ◽

pp. 1380-1385 ◽

Cited By ~ 11

Author(s):

Katinka Albrecht ◽

Johanna Callhoff ◽

Gisela Westhoff ◽

Thomas Dietrich ◽

Thomas Dörner ◽

...

Keyword(s):

Cohort Study ◽

Dental Implants ◽

Patient Reported Outcomes ◽

Signs And Symptoms ◽

Sjögren Syndrome ◽

Sjogren Syndrome ◽

Implant Survival ◽

Related Factors ◽

Patient Reported ◽

Observational Cohort

Objective.To investigate prevalence and patient-reported outcomes of dental implants in patients with Sjögren syndrome (SS).Methods.A total of 205 female patients from an observational cohort study answered oral health questionnaires about periodontal signs and symptoms, dentures, dental implants, comorbidities, and therapies that may interfere with bone remodeling. Data were compared with the reports of 87 female healthy controls.Results.The patients were older than the controls (58 ± 12 and 54 ± 14 yrs, respectively) and differed substantially in the prevalence of self-reported gingivitis (60% and 35%), self-reported periodontitis (19% and 8%), and in the numbers of remaining teeth (21 ± 7 and 24 ± 5). Patients more frequently had removable prostheses (36% compared with 23%) and dental implants (16% compared with 7%). The 32 patients with SS with dental implants had a mean number of 3.1 ± 2.0 implants. Notably, for patients with implants, their oldest existing implant survived for a mean period of 4.9 ± 5.4 years. A total of 5 of 104 (4.8%) implants in the patients and none of the 14 implants in the controls had to be removed. A total of 75% of the patients were highly satisfied with the implants and 97% would recommend them to other patients with SS.Conclusion.A substantial portion of patients with SS have dental complications and require subsequent implants. The majority were satisfied with the implants and would recommend them to other patients. The high implant survival rate may encourage patients, rheumatologists, and dentists to consider dental implants for the treatment of patients with SS.

Download Full-text

Changes in patient-reported outcomes in patients diagnosed with and treated for multiple myeloma in the Connect MM registry.

Journal of Clinical Oncology ◽

10.1200/jco.2013.31.15_suppl.8586 ◽

2013 ◽

Vol 31 (15_suppl) ◽

pp. 8586-8586 ◽

Cited By ~ 1

Author(s):

Chris L. Pashos ◽

Jatin J. Shah ◽

Howard R. Terebelo ◽

Brian G. Durie ◽

Rafat Abonour ◽

...

Keyword(s):

Multiple Myeloma ◽

Patient Reported Outcomes ◽

Performance Status ◽

Eastern Cooperative Oncology Group ◽

Staging System ◽

Ecog Performance Status ◽

Related Factors ◽

Patient Reported ◽

Ecog Ps ◽

The Impact

8586 Background: Little is known about the impact of treatment on patient-reported outcomes (PROs) and health-related quality of life (HRQoL) in multiple myeloma (MM) patients (pts). The change in PROs of MM pts between baseline and 1 year was assessed relative to their baseline International Staging System (ISS) stage and Eastern Cooperative Oncology Group (ECOG) performance status (PS) score. Methods: Connect MM is a prospective US registry of MM pts initiated in 2009. Clinicians reported pt demographics, ECOG PS score, and ISS stage. PROs were collected at baseline and at 1 year utilizing the Functional Assessment of Cancer Therapy (FACT)-MM, EQ-5D, and Brief Pain Inventory (BPI). Changes in FACT-MM, EQ-5D, and BPI scores were analyzed by ISS stage and ECOG PS score in 636 pts meeting CRAB criteria from 189 centers. Results: Most pts were male (58%) and white (84%). Mean age was 66 years (± 11). Pts were treated in community (81%), academic (17%), or veterans/military (2%) settings. ISS stages of pts were: I (29%), II (35%), and III (35%). ECOG PS scores were 0 (37%), 1 (49%), 2 (11%), and 3 (3%). Improvements in overall HRQoL as shown by the FACT-MM and FACT-General (G) total scores, were observed across all ISS stages (P = 0.03 to < 0.0001) with no significant differences between stages. Improvements in FACT-MM and FACT-G total scores were observed with ECOG PS scores 1–3 (P = 0.03 to 0.005). Pts with poorer ECOG PS scores tended to have greater improvement in EQ-5D domains of mobility, self-care, and usual activities. HRQoL/functional ability improved in 4 of 5 FACT domains (except social/family; all others P < 0.0001), and in 4 of 5 EQ-5D domains (except pain/discomfort; all others, P = 0.01 to < 0.0001). BPI showed that overall average pain improved (P < 0.0005) over 1 year, but statistically significant differences by ISS stage or ECOG PS score were not observed. Conclusions: Connect MM data showed that overall HRQoL of MM pts improved between baseline and 1 year, with a consistent benefit observed across pts with different ISS stages and ECOG PS scores. Additional analysis should examine which disease- and treatment-related factors are associated with these HRQoL improvements.

Download Full-text

A digital oncology patient-reported outcomes platform: Building innovative electronic patient symptom assessments in epic mychart to improve the quality of life and survival of patients with advanced cancer.

Journal of Clinical Oncology ◽

10.1200/jco.2019.37.15_suppl.e18312 ◽

2019 ◽

Vol 37 (15_suppl) ◽

pp. e18312-e18312 ◽

Cited By ~ 1

Author(s):

Sidharth Anand ◽

Anne Margaret Walling ◽

Sarah F. DAmbruoso ◽

Neil Wenger ◽

Jennifer Singer ◽

...

Keyword(s):

Quality Of Life ◽

Overall Survival ◽

Advanced Cancer ◽

Patient Reported Outcomes ◽

Best Practice ◽

Response Rate ◽

Assessment System ◽

Patient Reported ◽

Practice Advisory

e18312 Background: Establishing a system to monitor patient reported outcomes (“PRO”) has been demonstrated to be essential for a well-functioning cancer system. Studies have shown that routine collection of PROs allows providers to address medical issues earlier and impacts a patient’s overall survival. Unmet needs for symptom management are prevalent in the cancer population, especially patients with advanced cancer. Approximately 35% of UCLA Hematology-Oncology patients with advanced cancer in 2016 presented to Emergency Rooms for symptom-related complaints such as nausea, pain, constipation, dehydration, and fatigue. We hypothesize that the creation of an electronic PRO platform through EPIC MyChart will ensure patients receive timely evaluation of their symptoms, resulting in improved quality of life, and decreased ER and hospital utilization. Methods: We developed an innovative PRO platform through Epic MyChart along with a Best Practice Advisory alert system to identify patients at risk for worsening symptoms, ER visits, and inpatient admissions. We then built an electronic version of the Edmonson Symptoms Assessment System, which providers can push to patients through Epic MyChart, with results stored within the Flowsheets section of Epic. We also built a passive alert using Epic’s Best Practice Advisory (“BPA”) system, to notify providers when a patient’s MyChart ESAS Assessment Scores have exceeded a defined threshold. Results: Preliminary data from surveys sent to a series of advanced cancer patients seen in an outpatient palliative oncology clinic over 1 month, demonstrated a 100% response rate (6/7) surveys completed when sent one week prior to patient’s being seeing in clinic, and 17% response rate (1/6) when sent two to three weeks prior to clinic visit. The average total ESAS score reported was 40, with average individual score of 4/10 for any given symptom. Conclusions: We will implement this electronic PRO platform in multiple oncology clinics at UCLA, and measure provider and patient satisfaction, completion rates, and monitor outcomes such as ED visits and inpatient admissions. We hope this system will lead to an overall survival benefit. This project demonstrates the potential of developing innovative PRO platforms through Epic MyChart and the importance of clinical workflows in the implementation process.

Download Full-text

Incorporating geriatric patient reported outcomes into novel screening tool of distress and supportive care concerns.

Journal of Clinical Oncology ◽

10.1200/jco.2018.36.34_suppl.37 ◽

2018 ◽

Vol 36 (34_suppl) ◽

pp. 37-37

Author(s):

James I Gerhart ◽

Ana Gordon ◽

Betty Roggenkamp ◽

Paramjeet Khosla ◽

Julia Rachel Trosman ◽

...

Keyword(s):

Geriatric Patient ◽

Patient Reported Outcomes ◽

Screening Tool ◽

Self Care ◽

Specific Treatment ◽

Average Score ◽

Institute Of Medicine ◽

Distress Screening ◽

Patient Reported ◽

Supportive Oncology

37 Background: The Institute of Medicine (IOM) 2013 Report recommends that supportive oncology care start at cancer diagnosis; the Commission on Cancer (CoC) Standard 3.2 requires distress screening and indicated action. The Supportive Oncology Collaborative, collaborative of 100+ clinicians funded by The Coleman Foundation, developed a patient-centric screening tool (CSOC-ST) adapted from ASCO Distress, NCCN Distress Problem List, IOM report and CoC standards, and other validated sub-tools (Weldon, ASCO-Q 2017). The Collaborative then revised the CSOC-ST tool to align with geriatric guidelines. Methods: Literature and guidelines review of geriatric screening, added items to CSOC-ST, and piloted at 4 sites. Descriptive statistics and Fisher’s exact test used. Results: 473 patients screened with added geriatric relevant items to CSOC-ST: self-care concerns (PROMIS Instrumental Support), living alone (ASCO Distress 2014), and memory / cognition (PROMIS item bank). Treatment/care concern items were revised to identify health care power of attorney and advance directive interest. Geriatric related items endorsed by patients, see Table. PHQ4, Anxiety and Depression, average score 2.4 (mild > 3). Higher scores on the PHQ-4 were significantly associated with each of the following: self-care concerns, memory/cognition concerns and specific treatment/care concerns (p < .0001). Conclusions: Pilot results and comparison to geriatric guidelines identified important items to support geriatric patient reported outcomes screening. After pilot, added 3 items for falls/frailty. Eight sites implementing this CSOC-ST.[Table: see text]

Download Full-text

Patient-Reported Chronic Pain Outcomes After Lung Transplantation

Seminars in Cardiothoracic and Vascular Anesthesia ◽

10.1177/1089253219882432 ◽

2019 ◽

Vol 24 (1) ◽

pp. 96-103 ◽

Cited By ~ 1

Author(s):

Rebecca Y. Klinger ◽

Claire Cunniff ◽

Negmeldeen Mamoun ◽

Mary Cooter ◽

Nazish Hashmi ◽

...

Keyword(s):

Chronic Pain ◽

Lung Transplantation ◽

Patient Reported Outcomes ◽

Lung Transplant ◽

Response Rate ◽

Transplant Recipients ◽

Patient Reported ◽

Pain Outcomes ◽

Lung Transplant Recipients

Chronic pain after lung transplantation is a significant concern, in particular given the heterogeneity of the patient population and the challenges of achieving adequate pain control amid concerns related to complex immunosuppressant regimens and the possibility of respiratory depression. We undertook a patient-reported outcomes (PRO) survey administered via our electronic health care portal to examine the postoperative incisional pain prevalence in a cohort of lung transplant recipients at a single, high-volume center where bilateral thoracosternotomy is the preferred surgical approach. The Patient Reported Outcomes Measurement Information System (PROMIS) Global Health and Pain Intensity short forms were sent to a total of 173 lung transplant recipients who were more than 2 months postsurgery at the time of the study. A total of 64 patients responded to both PROMIS surveys (response rate 38%). In the cohort of survey respondents, we observed a chronic pain incidence of 58% after lung transplantation (median pain score 1/10) and an overall good quality of life score (median score 4/5); however, only 9.4% reported moderate-severe pain (pain score ≥5/10). Survey nonrespondents had higher rates of pretransplant opioid and psychiatric medication use compared with respondents. In this study, we demonstrated the feasibility of using an electronic PRO survey for assessing postoperative pain outcomes after lung transplantation. However, measuring pain outcomes using this type of tool highlights issues of response rate and potential selection bias. Larger studies are needed to adequately assess the risk and predictors of chronic pain after lung transplantation and its impact on quality of life.

Download Full-text

Response Rate of Patient Reported Outcomes: the Delivery Method Matters

10.21203/rs.3.rs-141497/v1 ◽

2021 ◽

Author(s):

Olaf Neve ◽

Peter Paul G. Van Benthem ◽

Anne M. Stiggelbout ◽

Erik F. Hensen

Keyword(s):

Outpatient Clinic ◽

Patient Reported Outcomes ◽

Response Rate ◽

Response Rates ◽

Delivery Mode ◽

Delivery Method ◽

Delivery Methods ◽

Substantial Impact ◽

Patient Reported ◽

The Impact

Abstract Background: Patient Reported Outcomes (PROs) are subjective outcomes of disease and/or treatment in clinical research. For effective evaluations of PROs, high response rates are crucial. This study assessed the impact of the delivery method on the patients’ response rate.Methods: A cohort of patients with a unilateral vestibular schwannoma (a condition with substantial impact on quality of life, requiring prolonged follow-up) was assigned to three delivery methods: email, regular mail, and hybrid. Patients were matched for age and time since the last visit to the outpatient clinic. The primary outcome was the response rate, determinants other than delivery mode were age, education and time since the last consultation. In addition, the effect of a second reminder by phone was evaluated. Results: In total 602 patients participated in this study. The response rates for delivery by email, hybrid, and mail were 45%, 58% and 60%, respectively. The response rates increased after a reminder by phone to 62%, 67% and 64%, respectively. A lower response rate was seen in association with a low level of education and longer time interval since last outpatient clinic visit.Conclusion: The response rate for PRO surveys is influenced by the delivery method. PRO surveys by regular mail yield the highest response rate, followed by hybrid and email delivery methods. Hybrid delivery combines good response rates with the ease of digitally returned questionnaires.

Download Full-text