scholarly journals AquaScouts: ePROs Implemented as a Serious Game for Children With Cancer to Support Palliative Care

2021 ◽  
Vol 3 ◽  
Author(s):  
Stefan Hoffmann ◽  
Robert Schraut ◽  
Thomas Kröll ◽  
Wiebke Scholz ◽  
Tatiana Belova ◽  
...  
Keyword(s):  
Palliative Care ◽  
Participatory Design ◽  
Digital Health ◽  
Patient Reported Outcome ◽  
Serious Game ◽  
Psychological Burden ◽  
User Input ◽  
Patients With Cancer ◽  
Patient Reported ◽  
High Level

MyPal is a European initiative focusing on the use of the electronic patient reported outcome (ePRO) measures to enhance patient engagement in palliative cancer care via digital self-reporting palliative care for patients with cancer. As a part of its approach, MyPal also focuses on pediatric patients, implementing a specific digital health platform including a serious game to facilitate the reporting of the symptoms and overall status regarding their quality of life (QoL). To this end, the reduction of psychological burden related to frequent reporting, a.k.a. as “reporting fatigue” has been identified as a priority. In this study, we present the MyPal-CHILD platform, emphasizing on the serious game named AquaScouts and its key design decisions, while also emphasizing on the respective challenges. More specifically, we provide insights on the participatory design approach applied during the design of the platform and the high-level goals defined based on end-user input. In addition, the validation process applied before the use of the platform under real-world conditions is also presented. Finally, we discuss a number of challenges and the prospects of deploying eHealth interventions to support palliative care.

scholarly journals MyPal ADULT study protocol: a randomised clinical trial of the MyPal ePRO-based early palliative care system in adult patients with haematological malignancies

BMJ Open ◽  
2021 ◽  
Vol 11 (11) ◽  
pp. e050256
Author(s):  
Lydia Scarfò ◽  
Christina Karamanidou ◽  
Michael Doubek ◽  
Tina Garani-Papadatos ◽  
Jana Didi ◽  
...  
Keyword(s):  
Palliative Care ◽  
Participatory Design ◽  
Digital Health ◽  
Medication Management ◽  
Randomised Trial ◽  
Randomised Clinical Trial ◽  
Haematological Malignancies ◽  
Early Palliative Care ◽  
Horizon 2020 ◽  
Patient Reported

IntroductionThe systematic collection of electronic patient-reported outcome (ePRO) in the routine care of patients with chronic haematological malignancies such as chronic lymphocytic leukaemia (CLL) and myelodysplasia syndromes (MDS) can constitute a very ambitious but worthwhile challenge. MyPal is a Horizon 2020 Research & Innovation Action aiming to meet this challenge and foster palliative care for patients with CLL or MDS by leveraging ePRO systems to adapt to the personal needs of patients and caregiver(s).Methods and analysisIn this interventional randomised trial, 300 patients with CLL or MDS will be recruited across Europe. Patients will be randomly allocated to early palliative care using the MyPal system (n=150) versus standard care including general palliative care if needed (n=150). Patients in the experimental arm will be given access to the MyPal digital health platform which consists of purposely designed software available on smartphones and/or tablets. The platform entails different functionalities including physical and psychoemotional symptom reporting via regular questionnaire completion, spontaneous self-reporting, motivational messages, medication management and a personalised search engine for health information. Data on patients’ activity (daily steps and sleep quality) will be automatically collected via wearable devices.Ethics and disseminationThe integration of ePROs via mobile applications has raised ethical concerns regarding inclusion criteria, information provided to participants, free and voluntary consent, and respect for their autonomy. These have been carefully addressed by a multidisciplinary team. Data processing, dissemination and exploitation of the study findings will take place in full compliance with European Union data protection law. A participatory design was adopted in the development of the digital platform involving focus groups and discussions with patients to identify needs and preferences. The protocol was approved by the ethics committees of San Raffaele (8/2020), Thessaloniki ‘George Papanikolaou’ Hospital (849), Karolinska Institutet (20.10.2020), University General Hospital of Heraklion (07/15.4.2020) and University of Brno (01-120220/EK).Trial registration numberNCT04370457.

scholarly journals Understanding how a palliative-specific patient-reported outcome intervention works to facilitate patient-centred care in advanced heart failure: A qualitative study

2017 ◽  
Vol 32 (1) ◽  
pp. 143-155 ◽  
Author(s):  
Pauline M Kane ◽  
Clare I Ellis-Smith ◽  
Barbara A Daveson ◽  
Karen Ryan ◽  
Niall G Mahon ◽  
...  
Keyword(s):  
Heart Failure ◽  
Palliative Care ◽  
Chronic Heart Failure ◽  
Unmet Needs ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Specific Patient ◽  
Patient Centred Care ◽  
Palliative Care Outcome Scale ◽  
Patient Reported

Background: Palliative care needs of patients with chronic heart failure are poorly recognised. Policy makers advise a patient-centred approach to holistically assess patients’ needs and care goals. Patient-reported outcome measures are proposed to facilitate patient-centred care. Aim: To explore whether and how a palliative care–specific patient-reported outcome intervention involving the Integrated Palliative care Outcome Scale influences patients’ experience of patient-centred care in nurse-led chronic heart failure disease management clinics. Design: A feasibility study using a parallel mixed-methods embedded design was undertaken. The qualitative component which examined patients and nurses experience of the intervention is reported here. Semi-structured interviews were conducted and analysed using framework analysis. Setting/participants: Eligible patients attended nurse-led chronic heart failure disease management clinics in two tertiary referral centres in Ireland with New York Heart Association functional class II–IV. Nurses who led these clinics were eligible for inclusion. Results: In all, 18 patients and all 4 nurses involved in the nurse-led clinics were interviewed. Three key themes were identified: identification of unmet needs, holistic assessment and patient empowerment. The intervention impacted on processes of care by enabling a shared understanding of patients’ symptoms and concerns, facilitating patient–nurse communication by focusing on these unmet needs and empowering patients to become more involved in clinical discussions. Conclusion: This Integrated Palliative care Outcome Scale–based intervention empowered patients to become more engaged in the clinical consultation and to highlight their unmet needs. This study adds to the evidence for the mechanism of action of patient-reported outcome measures to improve patient-centred care and will help inform outcome selection for future patient-reported outcome measure research.

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

Using routine databases to evaluate Electronic Palliative Care Co-ordination Systems (EPaCCS)

2021 ◽  
pp. bmjebm-2019-111332
Author(s):  
Christina Sian Chu
Keyword(s):  
Palliative Care ◽  
End Of Life Care ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Research Quality ◽  
Patient Reported ◽  
Quasi Experimental ◽  
Randomised Controlled ◽  
Study Designs

In response to the government’s drive to expand Electronic Palliative Care Co-ordination Systems (EPaCCS) across England by 2020, further evidence for this intervention needs to be established quickly. With palliative and end-of-life care research being an underfunded area, the availability and lower costs of routine databases make it an attractive resource to integrate into studies evaluating EPaCCS without jeopardising research quality. This article describes how routine databases can be used to address the current paucity of high-quality evidence; they can be used in a range of study designs, including randomised controlled trials and quasi-experimental designs, and may also be able to contribute quality of life or patient-reported outcome measures.

Is there evidence to support an indication for surface replacement arthroplasty?

2019 ◽  
Vol 101-B (1_Supple_A) ◽  
pp. 32-40 ◽  
Author(s):  
M. D. Hellman ◽  
M. C. Ford ◽  
R. L. Barrack
Keyword(s):  
Stress Shielding ◽  
Patient Reported Outcome ◽  
Complication Rates ◽  
Surface Replacement ◽  
Hip Biomechanics ◽  
Surface Replacement Arthroplasty ◽  
Replacement Arthroplasty ◽  
Patient Reported ◽  
High Level

AimsSurface replacement arthroplasty (SRA), compared with traditional total hip arthroplasty (THA), is more expensive and carries unique concern related to metal ions production and hypersensitivity. Additionally, SRA is a more demanding procedure with a decreased margin for error compared with THA. To justify its use, SRA must demonstrate comparable component survival and some clinical advantages. We therefore performed a systematic literature review to investigate the differences in complication rates, patient-reported outcomes, stress shielding, and hip biomechanics between SRA and THA.Materials and MethodsA systematic review of the literature was completed using MEDLINE and EMBASE search engines. Inclusion criteria were level I to level III articles that reported clinical outcomes following primary SRA compared with THA. An initial search yielded 2503 potential articles for inclusion. Exclusion criteria included review articles, level IV or level V evidence, less than one year’s follow-up, and previously reported data. In total, 27 articles with 4182 patients were available to analyze.ResultsFracture and infection rates were similar between SRA and THA, while dislocation rates were lower in SRA compared with THA. SRA demonstrated equivalent patient-reported outcome scores with greater activity scores and a return to high-level activities compared with THA. SRA more reliably restored native hip joint biomechanics and decreased stress shielding of the proximal femur compared with THA.ConclusionIn young active men with osteoarthritis, there is evidence that SRA offers some potential advantages over THA, including: improved return to high level activities and sport, restoration of native hip biomechanics, and decreased proximal femoral stress shielding. Continued long-term follow up is required to assess ultimate survivorship of SRA.

scholarly journals High Level of Agreement between Electronic and Paper Mode of Administration of a Thyroid-Specific Patient-Reported Outcome, ThyPRO

2016 ◽  
Vol 5 (1) ◽  
pp. 65-72 ◽  
Author(s):  
Sofie Larsen Rasmussen ◽  
Lars Rejnmark ◽  
Eva Ebbehøj ◽  
Ulla Feldt-Rasmussen ◽  
Åse Krogh Rasmussen ◽  
...  
Keyword(s):  
Patient Reported Outcome ◽  
Specific Patient ◽  
Mode Of Administration ◽  
Patient Reported ◽  
High Level ◽  
Level Of Agreement

Predictive value of the patient reported outcome “living with cancer” instrument on overall survival in advanced cancer patients: A tool for guiding timing of palliative care consultations.

2017 ◽  
Vol 35 (15_suppl) ◽  
pp. 10025-10025
Author(s):  
Stuart L. Goldberg ◽  
Dhakshila Paramanathan ◽  
Srikesh Arunajadai ◽  
Victoria DeVincenzo ◽  
Ruth Pe Benito ◽  
...  
Keyword(s):  
Palliative Care ◽  
Overall Survival ◽  
Advanced Cancer ◽  
Cox Model ◽  
Performance Status ◽  
Patient Reported Outcome ◽  
Cancer Type ◽  
Advanced Cancer Patients ◽  
Patient Reported ◽  
Living With Cancer

10025 Background: The Living with Cancer (LWC) patient reported outcome (PRO) instrument evaluates distress from the point of view of the advanced cancer pt. The 7-item Likert survey measures 4 personhood domains (performance status, pain, burden [financial and family], depression) with scores ranging 0-112. In a pilot study of 433 cancer pts at a single center a score of >28 was associated with an increased likelihood of physician’s (blinded) opinion of need for end-of-life care discussions ( J Palliative Med 2016). Methods: The LWC instrument is a statistically validated PRO (ASCO Palliative Care Symposium 2016). LWC was administered to 1024 cancer pts receiving non-curative therapy at 7 centers (Regional Cancer Care Associates, NJ) from Sept 2015 - Oct 2016. LWC surveys were linked to the Cota database, which extracts and enriches data from EHRs. Date of survey was used as the start point in time-to-event analysis. Results: 290 (28%) pts expired during the study (median f/u 9.9 months). 267 (26%) pts exceeded the threshold score of 28 defined in the pilot set (28 was also independently this study’s optimal cut point). Pts with an LWC score >28 had inferior 6 and 12 mo overall survival (69% and 54%) vs pts with scores <29 (88% and 73%) (log rank p<0.001). A Cox model demonstrated that LWC score and cancer type were significant (LWC: p<0.001, cancer types (compared to B): GI p<0.001, GU: p=0.013, T: p<0.001, M: p=0.334) A one point score increase in LWC resulted in a 1.8% increase in expected hazard. Among solid tumor pts with LWC >28, 20% died within the next 3 mo and 35% died within the next 6 mo, indicating appropriate timing for hospice and palliative care consults, respectively. Conclusions: Pt responses to the LWC instrument predict survival among advanced cancer pts and may be useful in guiding timing of palliative care consultations. [Table: see text]

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