Palliative home-based technology from a practitioner's perspective: benefits and disadvantages

This critical review paper explores the concept of palliative home-based technology from a practitioner's perspective. The aim of the critical review was to scope information available from published and unpublished research on the current state of palliative home-based technology, practitioner-focused perspectives, patient-focused perspectives, quality of life, and the implications for clinical practice. Published and unpublished studies were included. An example of one UK patient-centered home-based technology is explored as an exemplar. The evidence suggests that despite the challenges, there are numerous examples of good practice in relation to palliative home-based technology. Improvements in technology mean that telehealth has much to offer people being cared for at home with palliative needs. However, some of the evaluative evidence is limited, and further rigor is needed when evaluating future technology-based solutions innovations

Telemonitoring via Self-Report and Video Review in Community Palliative Care: A Case Report

Continuous monitoring and management of a person’s symptoms and performance status are critical for the delivery of effective palliative care. This monitoring occurs routinely in inpatient settings; however, such close evaluation in the community has remained elusive. Patient self-reporting using telehealth offers opportunities to identify symptom escalation and functional decline in real time, and facilitate timely proactive management. We report the case of a 57­year-old man with advanced non-small cell lung cancer who participated in a telehealth trial run by a community palliative care service. This gentleman was able to complete self-reporting of function and symptoms via iPad although at times he was reticent to do so. Self-reporting was perceived as a means to communicate his clinical needs without being a bother to the community palliative care team. He also participated in a videoconference with clinical staff from the community palliative care service and his General Practitioner. Videoconferencing with the nurse and GP was highly valued as an effective way to communicate and also because it eliminated the need for travel. This case report provides important information about the feasibility and acceptability of palliative care telehealth as a way to better manage clinical care in a community setting

Feasibility-Usability Study of a Tablet App Adapted Specifically for Persons with Cognitive Impairment—SMART4MD (Support Monitoring and Reminder Technology for Mild Dementia)

Population ageing within Europe has major social and economic consequences. One of the most devastating conditions that predominantly affects older people is dementia. The SMART4MD (Support Monitoring and Reminder Technology for Mild Dementia) project aims to develop and test a health application specifically designed for people with mild dementia. The aim of this feasibility study was to evaluate the design of the SMART4MD protocol, including recruitment, screening, baseline examination and data management, and to test the SMART4MD application for functionality and usability before utilization in a full-scale study. The feasibility study tested the protocol and the app in Spain and Sweden. A total of nineteen persons with cognitive impairment, and their informal caregivers, individually performed a task-based usability test of the SMART4MD app model in a clinical environment, followed by four-week testing of the app in the home environment. By employing a user-centered design approach, the SMART4MD application proved to be an adequate and feasible interface for an eHealth intervention. In the final usability test, a score of 81% satisfied users was obtained. The possibility to test the application in all the procedures included in the study generated important information on how to present the technology to the users and how to improve these procedures

Patients' experiences with a welfare technology application for remote home care: A longitudinal study

This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.Aims and Objectives: To explore the longitudinal experiences using an application named remote home care for remote palliative care among patients with cancer living at home. Background: Introducing welfare technology in home-based care for patients with cancer in the palliative phase is internationally suggested as a measure to remotely support palliative care needs. However, little is known about the experiences of patients utilising welfare technology applications to receive home-based care from healthcare professionals in a community care context. Although living with cancer in the palliative phase often presents rapidly changing ailments, emotions and challenges with patients' needs changing accordingly, no studies exploring the longitudinal experiences of patients were found. Design: A qualitative study with a longitudinal, exploratory design. Methods: Data were collected through individual interviews with 11 patients over 16 weeks. The data were analysed using qualitative content analysis. The COREQ checklist guided the reporting of the study. Results: Three themes were identified: (1) potential to facilitate self-governance of life-limiting illness in daily life, (2) need for interpersonal relationships and connections, and (3) experiences of increased responsibility and unclear utility of the Remote Home Care. Conclusion: The results showed that remote home care facilitated patients' daily routines, symptom control and improved illness-management at home. Interpersonal relationships with healthcare professionals were considered pivotal for satisfactory follow-up. Infrastructural glitches regarding data access, information sharing and lack of continuous adjustments of the application represented major challenges, with the potential to impose a burden on patients with cancer in the palliative phase Relevance to Clinical Practice: By exploring the experiences of patients in palliative care over time as the disease progresses, this study provides constructive insights for the design and development of welfare technology applications and optimal care strategies. Patient or Public Contribution: The remote home care was developed by interdisciplinary healthcare professionals.publishedVersio

mHealth in palliative care for cancer patients & care givers

Patients and caregivers in palliative care experience multidimensional pain. In current practice, information about a cancer patient progress is known when they visit a clinic or make a distress call when their conditions worsen. This strategy is not efficient for systematic monitoring of symptoms, which is key in improving palliative care. Mobile phones have helped to transform healthcare through diagnosis, health education and symptoms management of chronic illnesses. In this study, a mobile phone assessment tool was implemented at an outpatient palliative care clinic for cancer patients in Aga Khan University Hospital, Nairobi. The usefulness of the mobile phone application was examined. In the initial interview with a cohort of 19 patients and caregivers, 15 were eligible for the study. Patients and caregivers used the application to report their symptoms and needs at an interval of one week. Participatory action design was used whereas data collection was achieved through non-structured interviews. Findings from the study were organized into three themes: enhanced communication, improved assessment of total cancer pain and advocacy tool. This study illustrates that utilization of mobile phone applications can enhance palliative care by improving monitoring of symptoms and strengthening patient-provider communication

An International Urogynecological Association (IUGA)/International Continence Society (ICS) joint report on the terminology for the conservative and nonpharmacological management of female pelvic floor dysfunction

There has been an increasing need for the terminology on the conservative management of female pelvic floor dysfunction to be collated in a clinically based consensus report.This Report combines the input of members and elected nominees of the Standardization and Terminology Committees of two International Organizations, the International Urogynecological Association (IUGA) and the International Continence Society (ICS), assisted at intervals by many external referees. An extensive process of nine rounds of internal and external review was developed to exhaustively examine each definition, with decision-making by collective opinion (consensus). Before opening up for comments on the webpages of ICS and IUGA, five experts from physiotherapy, neurology, urology, urogynecology, and nursing were invited to comment on the paper.A Terminology Report on the conservative management of female pelvic floor dysfunction, encompassing over 200 separate definitions, has been developed. It is clinically based, with the most common symptoms, signs, assessments, diagnoses, and treatments defined. Clarity and ease of use have been key aims to make it interpretable by practitioners and trainees in all the different specialty groups involved in female pelvic floor dysfunction. Ongoing review is not only anticipated, but will be required to keep the document updated and as widely acceptable as possible.A consensus-based terminology report for the conservative management of female pelvic floor dysfunction has been produced, aimed at being a significant aid to clinical practice and a stimulus for research

Reduing Hospital Readmissions: IDEAL Discharge Planning for Heart Failure Management

Abstract The objectives during this project were to achieve by the end of 2018 an overall reduction of 25% in HF readmissions within 30 days. By identifying root causes of readmissions and using needs assessment within the microsystem, literature highlights the elements defining interventions that can be used to improve transitions of care and reduce avoidable HF hospital readmissions. A plan was developed for integrating an evidence-based practice, IDEAL Discharge Planning, along with engaging patients and families at bedside from the first day of admission until discharge to more effectively assist staff in providing patient-centered education and self-care skills. The results were a better care transition experience and prevention of avoidable readmissions in HF patient populations. The microsystem consists of twenty-six telemetry beds and specializes in managing patients with a primary diagnosis of cardiovascular disease. Fifty patients’ charts were reviewed for 2 months prior to initiation of the project, and again 2 months later to collect data specific to HF patient 30-day readmission rates. The CNL strives to identify quality measures that need improvement, incorporate new evidence into practice, implement new guidelines for patient care, track data on the project, and is able to show improved clinical outcomes that are immensely cost effective within the microsystem. Ultimately, this project should gain support and spread to other microsystems and other patient populations within the hospital organization

Planning and Implementing a Large-Scale COVID-19 Vaccination Clinic Recommendations, Reflections and Lessons Learned & A Guide for Maine Communities

In November 2020, the Maine Center for Disease Control and Prevention (Maine CDC) requested assistance from Maine hospitals to dispense COVID-19 vaccines. Mid Coast Hospital became a point of dispensing for Sagadahoc and Northern Cumberland Counties. Mid Coast Hospital became a MaineHealth member in January 2021, and benefitted from policies, procedures, and support of the larger MaineHealth system but did not adopt the Electronic Medical Record (EMR) system used by MaineHealth to schedule appointments, register patients and document vaccination until November 2021. The inability to use the EMR system required and allowed Mid Coast Hospital to make adaptations to the MaineHealth model, including an alternative online scheduling and eligibility screening system, unique registration forms, and a system to record each immunization with the State of Maine. These procedures had to be nimble and responsive to rapidly changing state mandates and weekly fluctuations in vaccine allocation, and meet the needs of the community, especially those who faced technology, mobility, literacy, and language barriers. I was assigned to serve as the COVID-19 Vaccine Clinic Director in November 2020 to plan and operate Mid Coast Hospital’s COVID-19 community vaccination efforts. This community guide provides guidance and templates used to turn the Town of Brunswick’s Parks and Recreation building into an efficient, high-volume community clinic, able to administer 800 vaccines a day, while following pandemic health guidelines. The resources can be adopted and adapted by anyone interested in offering vaccines to their community. This successful model allowed Mid Coast Hospital to dispense 56,466 doses of COVID-19 vaccine from January to May 2021 (Dumas, 2022)

The development and usability evaluation of the symptom management module in the support system APP for parents of children with acute leukaemia

Background Childhood cancer is the second cause of death in children. Leukaemia is the most common childhood cancer, accounting for 31% of cancers in children under 14. It has become a global concern for children's health. During the treatment of children with acute leukaemia, symptom management is the most painful thing for children and their parents. The symptom brings pain to children, reduces their quality of life, and affects the disease's prognosis. Moreover, the symptom can lead to the termination of treatment, hospitalization prolongation, and treatment costs increase. Therefore, parents need to participate in the symptom management of their children. The parents of children with acute leukaemia bear the heavy blow of their children’s condition and limited knowledge of leukaemia. They do not have sufficient knowledge for the treatment, care, symptom prevention, recognition, and management of the symptom. Hence, these facts result in an extreme lack of confidence in participating in symptom management of their children. Therefore, symptom management in children with acute leukaemia needs to be highly concerned. With the progress of mobile health technology, more and more information means are applied in chronic disease management. However, few studies focus on symptom management support for parents of children with acute leukaemia. Funded by the National Natural Science Foundation of China, our research team has constructed the framework of the support system APP for parents of children with acute leukaemia. The symptom management module of the support system APP was reserved—this study aimed at the pain points in the symptom management of children with acute leukaemia. By applying mobile health technology, this study constructed the symptom management module in the support system APP for parents of children with acute leukaemia, realized the function of the symptom management module, and finished the usability evaluation of the symptom management module. This study will help improve the effectiveness of symptom management of children with acute leukaemia, enhance parents' symptom management ability, and save medical resources. Objectives This research aims to develop the symptom management module in the support system APP for parents of children with acute leukaemia and evaluate the usability of the symptom management module. Purpose one: To explore the parents’ symptom management needs for children with acute leukaemia; Purpose two: To construct the image-text knowledge base of the symptom management module in the support system APP; Purpose three: To develop the symptom management module in the support system APP; Purpose four: To evaluate the usability of the symptom management module in the support system APP. Methods The study was comprised of 4 parts： Part1: The analysis of parents’ symptom management needs for children with acute leukaemia By the qualitative interview, six healthcare providers of the haematology-oncology department and 14 parents of children with acute leukaemia were interviewed, all from the Children's Hospital of Fudan University and the Children's Hospital of Suzhou University. This study also selected two WeChat groups of the haematology-oncology department of the Children's Hospital of Fudan University and the Children's Hospital of Suzhou University to collect and analyze the chat records of parents of children with acute leukaemia. The content analysis method was used to analyze the data of the interviews and the WeChat group chat records. Hence, the symptoms suitable for parents to manage, the symptom management needs of parents of children with acute leukaemia, and their needs for the symptom management module were deeply understood. Part2: The construction of the image-text knowledge base The clinical manuals, guidelines, scientific literature, and monographs on symptom management of children with acute leukaemia were searched. Combined with the preliminary analysis of symptom management needs in parents of children with acute leukaemia, the framework of the image-text knowledge base was constructed. Then, the symptom management module's preliminary image-text knowledge base was finished. Two researchers and two healthcare providers revised the preliminary image-text knowledge base. Finally, the researcher composed the final image-text knowledge base and reviewed it with two scientific researchers. Part3: The development of the symptom management module in the support system APP Based on the final image-text knowledge base and the analysis of the symptom management needs in parents of children with acute leukaemia, the brainstorming discussion with the multidisciplinary development team was organized to generate the function assumptions of the symptom management module. The multidisciplinary development team included three researchers, two healthcare providers, and two software engineers. By the human-centred concept and the agile development method, the researcher developed the symptom management module with software engineers through five steps: requirement confirmation, interface design, function realization, testing, and disclosure. Part4: The usability evaluation of the symptom management module in the support system APP The formative usability evaluation was implemented during the development of the symptom management module. The formative usability evaluation aimed to find the problems with the module's interface, font, and functions. Then the summarized usability evaluation was implemented when the module was completed. Five researchers, four healthcare providers, and ten parents of children with acute leukaemia were invited to evaluate the usability problems of the symptom management module by typical task analysis, Post-Study System Usability Questionnaire (PSSUQ), and semi-structured interviews. Results Part1: The analysis of symptom management needs in parents of children with acute leukaemia The qualitative study of parents of children with acute leukaemia precipitated: 1) the symptoms that parents participated or wanted to participate in, the preliminary symptom list suitable for parents to participate in (36 physiological symptoms and 5 psychological symptoms); 2) parents’ symptom management needs; 3) the functions of the symptom management module that parents needed. Moreover, the chat records of two WeChat groups were analyzed to supplement the parents’ symptom management needs. The qualitative results of healthcare providers presented: 1) the final symptom list suitable for parents of children with acute leukaemia to participate in (41 physiological symptoms and 6 psychological symptoms); 2) the symptom management-related knowledge that parents need ed to know; 3) the healthcare providers’ suggestion about the functions of the symptom management module. In conclusion, the final symptoms list suitable for parents to participate in (41 physiological symptoms and 6 psychological symptoms) was formed; Symptom management needs of parents of children with acute leukaemia (4 categories and 17 contents); Three main functions of the symptom management module (search function, symptom assessment and response function, and recommendation function). Part2: The construction of the image-text knowledge base The researcher constructed the framework of the image-text knowledge base, which included four categories and 17 contents. According to the framework, the preliminary image-text knowledge base was constructed. After the experts’ review and revision, the final image-text knowledge base was generated, including 41 image-text knowledge articles of physiological symptoms and 6 image-text knowledge articles of psychological symptoms. Part3: The development of symptom management module in the support system APP The functions assumptions of the symptom management module in the support system APP included (1) Active browsing and searching function; (2) Symptom assessment-based recommendation function ; (3) Content-based recommendation function. The functions of the developed symptom management module in support system APP included: (1) Active browsing and searching function: 1)Parents can directly browse the related image-text symptom management knowledge in the symptom management module; 2) Parents can search in the "Search" column, and the related image-text symptom management knowledge will emerge; (2) Symptom assessment-based recommendation function: After filling in the PROMIS (Patient-reported Outcomes Measurement Information System) pediatric self-reported / parent proxy-reported questionnaire in the APP, parents/children will be recommended the related symptom management knowledge according to the score of the PROMIS questionnaire; (3) Content-based recommendation function:1) If parents search for symptom-related information, the relevant image-text symptom management information will scroll in the "Recommended Articles" module in the APP home page; 2) When parents search for information related to chemotherapy drug, side effects related-symptoms of the chemotherapy drug will emerge in the search results; 3) There are physiological symptoms and psychological symptoms in the symptom management module, when it comes to a specific image-text symptom knowledge, the clickable related-symptom links (based on the symptom recommendation rule) are at the bottom of the image-text knowledge page. It will be linked to the other related symptom by clicking. Part4: The usability evaluation of the symptom management module in the support system APP In formative usability evaluation, six fundamental problems of the module interface were found and revised. After the development of the module, the summative usability evaluation was carried out. The scores of the PSSUQ after the test: researchers: 1)system usefulness is 5.2, information quality is 6.0, interface quality is 5.4, and overall evaluation is 6.0; 2) healthcare providers: system usefulness is 5.8, information quality is 6.0, interface quality is 5.9, and overall evaluation is 6.2; 3) parents: system usefulness is 5.8, information quality is 6.0, interface quality is 5.9, and overall evaluation is 6.2. The interview data with parents showed three topics related to usability: 1) " Awareness of symptoms management"; 2) " Advantages and benefits"; 3) " Disadvantages and obstacles." Conclusions Parents of children with acute leukaemia have various needs in symptom management. This study explored the suitable symptoms for parents to participate in (41 physiological and 6 psychological symptoms) and their needs in participation in their children’s symptom management. Based on these findings, the researcher constructed the image-text knowledge base and developed the symptom management module in the support system APP. The usability evaluation showed that the module had good usability and met the symptom management needs of parents of children with acute leukaemia