Setting a research agenda for progressive multiple sclerosis: The International Collaborative on Progressive MS

Despite significant progress in the development of therapies for relapsing MS, progressive MS remains comparatively disappointing. Our objective, in this paper, is to review the current challenges in developing therapies for progressive MS and identify key priority areas for research. A collaborative was convened by volunteer and staff leaders from several MS societies with the mission to expedite the development of effective disease-modifying and symptom management therapies for progressive forms of multiple sclerosis. Through a series of scientific and strategic planning meetings, the collaborative identified and developed new perspectives on five key priority areas for research: experimental models, identification and validation of targets and repurposing opportunities, proof-of-concept clinical trial strategies, clinical outcome measures, and symptom management and rehabilitation. Our conclusions, tackling the impediments in developing therapies for progressive MS will require an integrated, multi-disciplinary approach to enable effective translation of research into therapies for progressive MS. Engagement of the MS research community through an international effort is needed to address and fund these research priorities with the ultimate goal of expediting the development of disease-modifying and symptom-relief treatments for progressive MS

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

Can pacing self-management alter physical behaviour and symptom severity in chronic fatigue syndrome? : a case series

Given the lack of evidence in support of pacing self-management for patients with chronic fatigue syndrome (CFS), we examined whether physical behavior and health status of patients with CFS Would improve in response to a pacing self-management program. We performed an observational study of pacing self-management in seven CFS patients using a single-case study design. Stages A1 and A2 (7-day assessment periods) of the A1-B-A2 design corresponded to the baseline and posttreatment measurements of physical behavior (real-time activity monitoring) and health status (self-reported measures), respectively. Stage B (3 weeks of treatment) consisted of three individual treatment sessions of pacing self-management. When comparing pre- versus posttreatment data, we found that the patients' ability to perform daily activities and the severity of their symptom complexes were improved (p = 0.043). Concentration difficulties, mood swings, muscle weakness, and intolerance to bright light improved as well. A statistically significant decrease in the mean time spent doing light activity (<3 metabolic equivalents) was observed, but a change in the way physical activity was spread throughout the day was not. We found that 3 weeks of pacing self-management was accompanied by a modest improvement in symptom severity and daily functioning. The outcome of the present study calls for a randomized controlled clinical trial to examine the effectiveness of pacing self-management for people with CFS

Complex Care Management Program Overview - Technology

This report provides an overview of technology based complex care management programs, including:Cook County Health and Hospitals System - Computer Assisted Quality of Life and Symptom Assessment of Complex PatientsUniversity of Missouri - TigerPlaceWenatchee Valley Medical Center - Health Buddy -- Patient Telemonitoring Progra

Targeting hyperarousal: Mantram Repetition Program for PTSD in US veterans.

Background: Hyperarousal appears to play an important role in the development and maintenance of posttraumatic stress disorder (PTSD) symptoms, but current evidence-based treatments appear to address this symptom type less effectively than the other symptom clusters. The Mantram Repetition Program (MRP) is a meditation-based intervention that has previously been shown to improve symptoms of posttraumatic stress disorder (PTSD) and may be especially helpful for hyperarousal. If MRP is an effective tool for decreasing this often treatment-resistant symptom cluster, it may become an important clinical tool. Objective: The goal of this secondary analysis was to examine the effect of the MRP on hyperarousal and other PTSD symptom clusters and to examine hyperarousal as a mediator of treatment response. Method: Secondary analyses were conducted on data from a randomized controlled trial in which Veterans with PTSD (n = 173) were assigned to the MRP or a non-specific psychotherapy control and assessed pre-treatment, post-treatment and 8 weeks after treatment completion. The impact of the interventions on PTSD symptom clusters was examined, and time-lagged hierarchical linear modelling was applied to examine alternative mediation models. Results: All PTSD symptom clusters improved in both treatments. MRP led to greater reductions in hyperarousal at post-treatment (Hedge's g = 0.57) and follow-up (Hedge's g = 0.52), and in numbing at post-treatment (Hedge's g = 0.47). Hyperarousal mediated reductions in the composite of the other PTSD symptom clusters. Although the reverse model was significant as well, the effect was weaker in this direction. Conclusion: Interventions focused on the management of hyperarousal may play an important role in recovery from PTSD. The MRP appears efficacious in reducing hyperarousal, and thereby impacting other PTSD symptom clusters, as one pathway to facilitating recovery

Does Comfort Care Make You Uncomfortable? Use of the CARES Tool for End-of-Life Symptom Assessment and Management

Acute care nurses caring for end-of-life (EOL) patients often feel unprepared for and undereducated about this high-need population. According to current literature, many nurses lack adequate training in providing EOL care. This project aimed to improve symptom management of dying patients by providing acute care nurses education about EOL symptom assessment and medication use for symptom management. The revised Iowa model, which emphasizes clinician involvement, guided this evidence-based practice project. Sixteen acute care nurses received 30-minute in-person education, consisting of instruction in EOL symptom assessment and management via use of the CARES (comfort, airway, restlessness, emotional, self-care) tool and basic pharmacology review of common medications used for EOL symptom management. The thanatophobia scale was administered before, immediately after, and 1 month following the educational session to evaluate nurses’ uncomfortable feelings and sense of helplessness when caring for EOL patients. A benefit of the intervention appeared to be a decrease (though not a statistically significant decrease) in these negative feelings, which may have improved symptom management. Doses of medications used for symptom management in the last days of life were counted via electronic medical record review before and after education. Statistical analysis was not conducted due to the low number of doses. However, medication doses for symptom management appeared to increase after the educational session. The outcomes of this project support the necessity of EOL symptom management education for nurses

Frontotemporal dementia: the impact of patient behavioral symptoms on the physical and mental health of family caregivers.

BackgroundProviding informal support to someone with frontotemporal dementia (FTD) could be very stressful. Clarifying the relationship between patient behavioral problems and caregiver health could spur future research on effective symptom management strategies.MethodsSixty-one FTD family caregivers participated in a postal survey.ResultsPatient symptom severity was negatively associated with caregiver mental health (r = -0.26, p &lt; 0.05) but not significantly associated with caregiver physical health. In a regression analysis, caregiver emotional distress from patient behaviors made a statistically significant contribution to caregiver mental health, explaining approximately 10% of its variance.ConclusionThis study underscores the importance of focusing on FTD caregivers' perceived emotional distress from patient behavioral problems and ensuring they are getting the appropriate support they need

Investment Appraisal Process

This case study examines the capital budgeting practices of two chemical companies. It is found that the companies apply the value management tools to supplement the DCF measures. In addition, the R&D projects are assessed using qualitative methods. Moreover, the study revealed the symptom of a trend shift in the choice of investment appraisal techniques from traditional DCF to the newly crafted value management models.DCF methods;project;investment appraisal;shareholder value analysis;value management techniques

Comfort Care and Symptom Management

Discuss Common Concerns in Supportive Care •Grief •Pain •Nausea / Constipation / Diarrhea •Anxiety / Depression •Fatigue / Tiredness •Decision makin