Web-Based Return of Individual Patient-Reported Outcome Results Among Patients With Lymphoma: A Randomized Controlled Trial (Preprint)

2021 ◽  
Author(s):  
Lindy Paulina Johanna Arts ◽  
Simone Oerlemans ◽  
Jacobien M Kieffer ◽  
Judith Prins ◽  
Mels Hoogendoorn ◽  
...  
Keyword(s):  
Psychological Distress ◽  
Breast Cancer Survivors ◽  
Controlled Trial ◽  
Patient Reported Outcome ◽  
The Self ◽  
Self Management ◽  
Web Based ◽  
Management Intervention ◽  
Patient Reported ◽  
The Impact

BACKGROUND There has been a cultural shift toward patient engagement in health with a growing demand from patients to access their results. OBJECTIVE The Lymphoma InterVEntion [LIVE] trial was conducted to examine the impact of return of individual patient-reported outcome (PRO) results and a web-based self-management intervention on psychological distress, self-management, and satisfaction with information in a population-based setting. METHODS Return of PRO results included comparison with age- and sex-matched peers and was built into the PROFILES registry. The self-management intervention is an adaptation of an fully-automated evidence-based intervention for breast cancer survivors. Patients with lymphoma who completed the web-based questionnaire were equally randomized to 1) care as usual (CAU), 2) return of PRO results, and 3) return of PRO results plus self-management intervention. Patients completed questionnaires 9 to 18 months after diagnosis (T0; n=227), after 4 months (T1; n=190), and after 12 months (T2; n=170). RESULTS Of all invited patients, 25% (227/892) were randomly assigned to CAU (n=76), return of PRO results (n=74), or return of PRO results and access to Living with lymphoma (n=77). Return of PRO results was viewed by 77% (115/150) of those with access. No significant differences were observed for psychological distress, self-management, satisfaction with information provision, and healthcare use between patients who received their PRO results and those who did not (P>.05). Usage of the self-management intervention was low (3%; 2/76) and an effect could therefore not be determined. CONCLUSIONS Return of individual PRO results seems to meet patients’ wishes, but had no beneficial effects on patient outcome. Also, no negative effects were found when individual PRO results were disclosed, and the return of individual PRO results can be safely implemented in daily clinical practice. CLINICALTRIAL Netherlands Trial Register NTR5953 INTERNATIONAL REGISTERED REPORT RR2-10.1186/s13063-017-1943-2

Young, Empowered and Strong: A Web-Based Education and Supportive Care Intervention for Young Women With Breast Cancer Across the Care Continuum

2021 ◽  
pp. 933-943
Author(s):  
Tal Sella ◽  
Craig Snow ◽  
Hannah Freeman ◽  
Philip D. Poorvu ◽  
Shoshana M. Rosenberg ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Young Women ◽  
Breast Cancer Survivors ◽  
Metastatic Breast ◽  
Patient Reported Outcome ◽  
Self Management ◽  
Semistructured Interview ◽  
Web Based ◽  
Care Continuum ◽  
Patient Reported

PURPOSE Patient-centered digital interventions may help empower young women to self-manage symptoms and psychosocial concerns and support informational needs often unaddressed in clinic. METHODS Young, Empowered and Strong (YES) is an interactive web-based intervention designed to engage young women with personalized education and symptom self-management resources on the basis of responses to patient-reported outcome–based questionnaires. We piloted YES among young women (< 45 years) with newly diagnosed early breast cancer (EBC) or metastatic breast cancer (MBC) and breast cancer survivors (BCSs). Assessments were deployed weekly (EBC and MBC) or every 4 weeks (BCSs) over 12 weeks. At study completion, use, feasibility, and acceptability of YES were evaluated via a survey and semistructured interview. RESULTS Thirty women were enrolled between April and June 2019: 10 EBC, 10 BCSs, and 10 MBC. The mean age at diagnosis and enrollment was 36 (range 25-44) and 39 (range 31-44) years, respectively. Most participants were actively treated (96%, 27 of 28) with endocrine therapy (54%, 15 of 28) or chemotherapy (43%, 12 of 28). Overall, 61% (180 of 296) of assessments were completed (EBC: 70%, BCSs: 63%, and MBC: 52%). Of 37 patient-reported outcome and need domains, the most frequently triggered were sexual health (EBC: 90%, BCSs: 90%, and MBC: 90%), anxiety (EBC: 80%, BCSs: 90%, and MBC: 90%), stress and mindfulness (EBC: 80%, BCSs: 90%, and MBC: 90%), and fatigue (EBC: 90%, BCSs: 80%, and MBC: 90%). On postpilot survey, participants reported that YES helped them to learn (50%, 7 of 14), monitor (43%, 6 of 14), and manage (57%, 8 of 14) their symptoms. CONCLUSION YES is a feasible and acceptable digital intervention to support young women across the breast cancer care continuum. The nearly universal triggering of sexual and mental health needs suggests suboptimal management in the clinical setting and the potential for self-management through a digital platform.

Mindfulness-based lifestyle programs for the self-management of Parkinson’s disease in Australia

2018 ◽  
Vol 34 (4) ◽  
pp. 668-676 ◽  
Author(s):  
Brooke E Vandenberg ◽  
Jenny Advocat ◽  
Craig Hassed ◽  
Jennifer Hester ◽  
Joanne Enticott ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Controlled Trial ◽  
Mindfulness Training ◽  
The Self ◽  
Self Management ◽  
Structured Interviews ◽  
Lifestyle Program ◽  
Patient Reported ◽  
The Impact

Abstract Despite emerging evidence suggesting positive outcomes of mindfulness training for the self-management of other neurodegenerative diseases, limited research has explored its effect on the self-management of Parkinson’s disease (PD). We aimed to characterize the experiences of individuals participating in a facilitated, group mindfulness-based lifestyle program for community living adults with Stage 2 PD and explore how the program influenced beliefs about self-management of their disease. Our longitudinal qualitative study was embedded within a randomized controlled trial exploring the impact of a 6-week mindfulness-based lifestyle program on patient-reported function. The study was set in Melbourne, Australia in 2012–2013. We conducted semi-structured interviews with participants before, immediately after, and 6 months following participation in the program. Sixteen participants were interviewed prior to commencing the program. Of these, 12 were interviewed shortly after its conclusion, and 9 interviewed at 6 months. Prior to the program, participants felt a lack of control over their illness. A desire for control and a need for alternative tools for managing the progression of PD motivated many to engage with the program. Following the program, where participants experienced an increase in mindfulness, many became more accepting of disease progression and reported improved social relationships and self-confidence in managing their disease. Mindfulness-based lifestyle programs have the potential for increasing both participants’ sense of control over their reactions to disease symptoms as well as social connectedness. Community-based mindfulness training may provide participants with tools for self-managing a number of the consequences of Stage 2 PD.

scholarly journals Web-Based Patient-Reported Outcome Measures for Personalized Treatment and Care (PROMPT-Care): Multicenter Pragmatic Nonrandomized Trial

10.2196/19685 ◽  
2020 ◽  
Vol 22 (10) ◽  
pp. e19685
Author(s):  
Afaf Girgis ◽  
Ivana Durcinoska ◽  
Anthony Arnold ◽  
Joseph Descallar ◽  
Nasreen Kaadan ◽  
...  
Keyword(s):  
Emergency Department ◽  
Patient Reported Outcomes ◽  
Well Being ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Self Management ◽  
Diverse Population ◽  
Web Based ◽  
Patients With Cancer ◽  
Patient Reported

Background Despite the acceptability and efficacy of e–patient-reported outcome (ePRO) systems, implementation in routine clinical care remains challenging. Objective This pragmatic trial implemented the PROMPT-Care (Patient Reported Outcome Measures for Personalized Treatment and Care) web-based system into existing clinical workflows and evaluated its effectiveness among a diverse population of patients with cancer. Methods Adult patients with solid tumors receiving active treatment or follow-up care in four cancer centers were enrolled. The PROMPT-Care intervention supported patient management through (1) monthly off-site electronic PRO physical symptom and psychosocial well-being assessments, (2) automated electronic clinical alerts notifying the care team of unresolved clinical issues following two consecutive assessments, and (3) tailored online patient self-management resources. Propensity score matching was used to match controls with intervention patients in a 4:1 ratio for patient age, sex, and treatment status. The primary outcome was a reduction in emergency department presentations. Secondary outcomes were time spent on chemotherapy and the number of allied health service referrals. Results From April 2016 to October 2018, 328 patients from four public hospitals received the intervention. Matched controls (n=1312) comprised the general population of patients with cancer, seen at the participating hospitals during the study period. Emergency department visits were significantly reduced by 33% (P=.02) among patients receiving the intervention compared with patients in the matched controls. No significant associations were found in allied health referrals or time to end of chemotherapy. At baseline, the most common patient reported outcomes (above-threshold) were fatigue (39%), tiredness (38.4%), worry (32.9%), general wellbeing (32.9%), and sleep (24.1%), aligning with the most frequently accessed self-management domain pages of physical well-being (36%) and emotional well-being (23%). The majority of clinical feedback reports were reviewed by nursing staff (729/893, 82%), largely in response to the automated clinical alerts (n=877). Conclusions Algorithm-supported web-based systems utilizing patient reported outcomes in clinical practice reduced emergency department presentations among a diverse population of patients with cancer. This study also highlighted the importance of (1) automated triggers for reviewing above-threshold results in patient reports, rather than passive manual review of patient records; (2) the instrumental role nurses play in managing alerts; and (3) providing patients with resources to support guided self-management, where appropriate. Together, these factors will inform the integration of web-based PRO systems into future models of routine cancer care. Trial Registration Australian New Zealand Clinical Trials Registry ACTRN12616000615482; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=370633 International Registered Report Identifier (IRRID) RR2-10.1186/s12885-018-4729-3

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