Feasibility of electronic patient-reported outcome monitoring and self-management program in aplastic anemia and paroxysmal nocturnal hemoglobinuria-a pilot study (ePRO-AA-PNH).

INTRODUCTION Electronic patient-reported outcomes (ePRO) are increasingly recognized in health care, as they have been demonstrated to improve patient outcomes in cancer, but have been less studied in rare hematological diseases. The aim of this study was to develop and test the feasibility of an ePRO system specifically customized for aplastic anemia (AA) and paroxysmal nocturnal hemoglobinuria (PNH). METHODS After performing a user-centered design evaluation an ePRO system for AA and PNH patients could be customized and the application was tested by patients and their medical teams for 6 months. Symptom-reporting triggered self-management advice for patients and prompts them to contact clinicians in case of severe symptoms, while the medical team received alerts of severe symptoms for patient care. RESULTS All nine included patients showed a high adherence rate to the weekly symptom-reporting (72%) and reported high satisfaction. The system was rated high for usage, comprehensibility, and integration into daily life. Most patients (78%) would continue and all would recommend the application to other AA/PNH patients. Technical performance was rarely a barrier and healthcare providers saw ePRO-AA-PNH as a useful supplement, but the lacking integration into the hospital information system was identified as a major barrier to usage. CONCLUSION An ePRO system customized for AA and PNH was feasible in terms of adherence, satisfaction, and performance, showing a high potential for these rare conditions in terms of data collection and patient guidance. However, the integration into clinical workflows is crucial for further routine use. TRIAL REGISTRATION ClinicalTrials.gov NCT04128943

Jatkuvan toimittamisen julkaisukommunikaatiokäytäntöjen kehitys kansainväliselle Diplomityön tiivistelmä terveydenhoidon SaaS-toimittajalle

The case company of this research is a Software-as-Service healthcare provider with over 40 customer sites internationally. Recently, the company has changed their release model to continuous delivery. In continuous delivery, the software is kept constantly ready to be released, which enables deploying new updates to customers multiple times a week. The goal of the research was to study successful release communication practices in continuous delivery for an international SaaS healthcare provider. The research was conducted as a participatory action research, which consisted of three test iterations. During the iterations, different release communication practices were tested with 4 customer organizations and the employees of the case company. The results of this research suggest that successful release communication both with customers and employees of a SaaS company focuses on three key areas: 1) communicating the product roadmap of the company, 2) sharing the contents of the releases, and 3) providing information related to the launch of new features. The results indicate that release communication with healthcare customers can be targeted to a couple of key contacts, who will handle the release communication internally in their organization. The conclusion of the research is that neither customers nor team members outside of development team are completely satisfied with continuous delivery. Continuous delivery can be applied in the delivery of smaller updates and enhancements, but with the launch of any bigger feature, a fixed deploy date is recommended.Tämän tutkimuksen tutkimusyritys on SaaS-palveluntarjoaja terveydenhoitoalalla, jolla on yli 40 asiakasta ympäri Eurooppaa. Yritys on viimeisen vuoden sisällä vaihtanut ohjelmiston toimitusmalliaan jatkuvaan toimittamiseen. Jatkuvan toimittamisen mallissa ohjelmisto pidetään jatkuvasti teknisesti toimitusvalmiina, mikä mahdollistaa uusien päivitysten asentamisen asiakkaille jopa useasti viikossa. Tutkimuksen tavoitteena oli tutkia onnistuneita käytäntöjä ohjelmiston julkaisuihin liittyvään viestintään jatkuvan toimittamisen mallissa kansainvälisellä terveydenhuollon SaaS-palveluntarjoajalla. Tutkimus toteutettiin osallistuvana toimintatutkimuksena, joka koostui kolmesta testi-iteraatiosta. Iteraatioiden aikana erilaisia julkaisuviestintäkäytäntöjä testattiin testiryhmissä, jotka koostuivat neljästä asiakasyrityksestä sekä tutkimusyrityksen työntekijöistä. Tutkimuksen tulokset esittävät, että onnistunut julkaisukommunikaatio keskittyy kolmeen avainalueeseen: 1) yrityksen tuotetiekartan kommunikointiin, 2) julkaisujen sisällön jakamiseen ja 3) yksittäisen toiminnallisuuden julkaisemiseen liittyvään informaatioon. Tulokset indikoivat, että terveydenhuollon asiakkailla julkaisuviestintä tulisi kohdistaa muutamaan asiakkaan avainhenkilöön, jotka vastaisivat julkaisuihin liittyvän viestinnän jakamisesta sisäisesti. Tutkimuksen johtopäätös on, että asiakkaat eivätkä SaaS-toimittajan työntekijät ole täysin tyytyväisiä jatkuvan toimittamisen malliin. Tutkimus indikoi, että jatkuva toimittaminen sopii toimitusmallina pienempiin korjauksiin ja päivityksiin, mutta suuremmille uusille ominaisuuksille pitäisi pystyä antamaan etukäteen sovittu asennuspäivä

Low back pain and motor control dysfunction after pregnancy : The possible role of rectus diastasis

Publisher Copyright: © 2023 International Journal of Abdominal Wall and Hernia Surgery | Published by Wolters Kluwer - Medknow.Purpose: Pregnancy-related low back pain is a common condition. Persistent postpartum diastasis recti may cause back pain and motor control dysfunction. The role of diastasis in pregnancy-related back pain remains debatable. This study aimed to compare participants with increased symptoms after index pregnancy with those reporting no change in back pain or subjective movement control and to analyze inter-rectus distance. Materials and Methods: This case-control study included a cohort of women who delivered 1 year earlier. We recruited participants with increased symptoms (n = 14) after index pregnancy and controls (n = 41) and recorded their inter-rectus distance using ultrasound. A questionnaire was completed, and an ultrasound performed twice for each study group. Results: At the baseline, there was no significant difference in inter-rectus distance between cases and controls (mean 2.45 ± 1.01 cm and 2.09 ± 1.03 cm, respectively). A year after index pregnancy symptomatic cases had significantly wider inter-rectus distance than controls (mean 3.45 ± 0.90 cm and 2.40 ± 0.79 cm, respectively). Motor control dysfunction test results were not associated with core stability problems or back pain in this cohort. There was a difference in the sit-up test between cases and controls (mean 4.7 ± 4.2 and 8.2 ± 3.9, respectively). Conclusion: Women who reported increased back pain and core instability after index pregnancy had wider inter-rectus diameter than controls. In the case group with more symptoms after pregnancy, the classification of rectus diastasis (RD) changed from mild abdominal RD (2-3 cm) to moderate (>3-5 cm). RD may contribute to persistent pregnancy-related lumbopelvic pain.Peer reviewe

ePRO symptom follow-up of colorectal cancer patients receiving oxaliplatin-based adjuvant chemotherapy is feasible and enhances the quality of patient care:a prospective multicenter study

Abstract Purpose: Electronic (e) patient-reported outcomes (PROs) have been shown to improve the quality of life and survival in chemotherapy treated advanced cancer patients. We hypothesized that multidimensional ePRO centered approach could improve symptom management, streamline patient flow, and optimize the use of healthcare resources. Methods: In this multicenter trial (NCT04081558), colorectal cancer (CRC) patients receiving oxaliplatin-based chemotherapy as adjuvant or in the first- or second-line setting in advanced disease were included in the prospective ePRO cohort, while a comparative retrospective cohort was collected from the same institutes. The investigated tool consisted of a weekly e-symptom questionnaire integrated to an urgency algorithm and laboratory value interface, which generated semi-automated decision support for chemotherapy cycle prescription and individualized symptom management. Results: Recruitment to the ePRO cohort occurred 1/2019–1/2021 (n = 43). The comparator group (n = 194) consisted of patients treated in the same institutes 1–7/2017. The analysis was limited to adjuvant treated (n = 36 and n = 35). The feasibility of the ePRO follow-up was good with 98% reporting easy usage and 86% improved care, while health care personnel valued the easy use and logical workflow. In the ePRO cohort, 42% needed a phone call before planned chemotherapy cycles, while this was 100% in the retrospective cohort (p = 1.4e−8). Peripheral sensory neuropathy was detected significantly earlier with ePRO followed (p = 1e−5) but did not translate to earlier dose reduction, delays, or unplanned therapy termination compared to the retrospective cohort. Conclusion: The results suggest that the investigated approach is feasible and streamlines workflow. Earlier symptom detection may improve the quality in cancer care