Rethinking the patient: using Burden of Treatment Theory to understand the changing dynamics of illness

<b>Background</b> In this article we outline Burden of Treatment Theory, a new model of the relationship between sick people, their social networks, and healthcare services. Health services face the challenge of growing populations with long-term and life-limiting conditions, they have responded to this by delegating to sick people and their networks routine work aimed at managing symptoms, and at retarding - and sometimes preventing - disease progression. This is the new proactive work of patient-hood for which patients are increasingly accountable: founded on ideas about self-care, self-empowerment, and self-actualization, and on new technologies and treatment modalities which can be shifted from the clinic into the community. These place new demands on sick people, which they may experience as burdens of treatment.<p></p> <b>Discussion</b> As the burdens accumulate some patients are overwhelmed, and the consequences are likely to be poor healthcare outcomes for individual patients, increasing strain on caregivers, and rising demand and costs of healthcare services. In the face of these challenges we need to better understand the resources that patients draw upon as they respond to the demands of both burdens of illness and burdens of treatment, and the ways that resources interact with healthcare utilization.<p></p> <b>Summary</b> Burden of Treatment Theory is oriented to understanding how capacity for action interacts with the work that stems from healthcare. Burden of Treatment Theory is a structural model that focuses on the work that patients and their networks do. It thus helps us understand variations in healthcare utilization and adherence in different healthcare settings and clinical contexts

Community-based Multidimensional Cancer Rehabilitation in Norway – a Feasibility Study

Under embargo until: 2023-07-28Background: Cancer survival is often accompanied by late effects that can be mitigated by tailored rehabilitation. In Norway this has traditionally been offered as residential programs, whereas community-based cancer rehabilitation programs are lacking. Objective: The aim was to assess feasibility and acceptability of a newly developed community-based multidimensional cancer rehabilitation program in Norway. Methods: A feasibility study with a mixed methods explanatory sequential design. The intervention was a 12-week group-based rehabilitation program comprising five components: goal setting, physical exercise, psychoeducation, individual follow-up consultations and peer support. Feasibility was assessed through recruitment, retention and intervention delivery. Acceptability was assessed through intervention adherence and participant evaluation. Qualitative data were generated from focus group interviews. Statistical analyses were descriptive and qualitative data were transcribed and analyzed using framework analyses. Results: Sixty participants started and 55 completed the 12-week rehabilitation program. The majority were female (80%) and mean age was 56 years. The largest diagnostic group was breast cancer (42%). Retention was high (92%), as was adherence rates for all intervention components. The exercise component was rated the most beneficial, followed by individual consultations and peer support. Qualitative findings contributed to explaining the high adherence and positive evaluation. Conclusions: High retention, strong adherence and positive evaluation imply that the community-based program was feasible and acceptable to cancer survivors. Implications for practice: The results will aid intervention refinement and contribute to a future randomized controlled trial to examine its effectiveness. If successful, the rehabilitation program could be implemented in the Norwegian Cancer Pathway “Home”.acceptedVersio

Genome engineering of isogenic human ES cells to model autism disorders.

Isogenic pluripotent stem cells are critical tools for studying human neurological diseases by allowing one to study the effects of a mutation in a fixed genetic background. Of particular interest are the spectrum of autism disorders, some of which are monogenic such as Timothy syndrome (TS); others are multigenic such as the microdeletion and microduplication syndromes of the 16p11.2 chromosomal locus. Here, we report engineered human embryonic stem cell (hESC) lines for modeling these two disorders using locus-specific endonucleases to increase the efficiency of homology-directed repair (HDR). We developed a system to: (1) computationally identify unique transcription activator-like effector nuclease (TALEN) binding sites in the genome using a new software program, TALENSeek, (2) assemble the TALEN genes by combining golden gate cloning with modified constructs from the FLASH protocol, and (3) test the TALEN pairs in an amplification-based HDR assay that is more sensitive than the typical non-homologous end joining assay. We applied these methods to identify, construct, and test TALENs that were used with HDR donors in hESCs to generate an isogenic TS cell line in a scarless manner and to model the 16p11.2 copy number disorder without modifying genomic loci with high sequence similarity

Overview of Intelligent Power Controller Development for Human Deep Space Exploration

Intelligent or autonomous control of an entire spacecraft is a major technology that must be developed to enable NASA to meet its human exploration goals. NASA's current long term human space platform, the International Space Station, is in low earth orbit with almost continuous communication with the ground based mission control. This permits the near real-time control by the ground of all of the core systems including power. As NASA moves beyond Low Earth Orbit, the issues of communication time-lag and lack of communication bandwidth beyond geosynchronous orbit does not permit this type of operation. This paper presents the work currently ongoing at NASA to develop an architecture for an autonomous power control system as well as the effort to assemble that controller into the framework of the vehicle mission manager and other subsystem controllers to enable autonomous control of the complete spacecraft. Due to the common problems faced in both space power systems and terrestrial power system, the potential for spin-off applications of this technology for use in micro-grids located at the edge or user end of terrestrial power grids for peak power accommodation and reliability are described

Overview of Intelligent Power Controller Development for Human Deep Space Exploration

Intelligent or autonomous control of an entire spacecraft is a major technology that must be developed to enable NASA to meet its human exploration goals. NASA's current long term human space platform, the International Space Station, is in low Earth orbit with almost continuous communication with the ground based mission control. This permits the near real-time control by the ground of all of the core systems including power. As NASA moves beyond low Earth orbit, the issues of communication time-lag and lack of communication bandwidth beyond geosynchronous orbit does not permit this type of operation. This paper presents the work currently ongoing at NASA to develop an architecture for an autonomous power control system as well as the effort to assemble that controller into the framework of the vehicle mission manager and other subsystem controllers to enable autonomous control of the complete spacecraft. Due to the common problems faced in both space power systems and terrestrial power system, the potential for spin-off applications of this technology for use in micro-grids located at the edge or user end of terrestrial power grids for peak power accommodation and reliability are described

Translational framework for implementation evaluation and research: Protocol for a qualitative systematic review of studies informed by Normalization Process Theory (NPT)

Background: Normalization Process Theory (NPT) identifies mechanisms that have been demonstrated to play an important role in implementation processes. It is now widely used to inform feasibility, process evaluation, and implementation studies in healthcare and other areas of work. This qualitative synthesis of NPT studies aims to better understand how NPT explains observed and reported implementation processes, and to explore the ways in which its constructs explain the implementability, enacting and sustainment of complex healthcare interventions. Methods: We will systematically search Scopus, PubMed and Web of Science databases and use the Google Scholar search engine for citations of key papers in which NPT was developed.  This will identify English language peer-reviewed articles in scientific journals reporting (a) primary qualitative or mixed methods studies; or, (b) qualitative or mixed methods evidence syntheses in which NPT was the primary analytic framework. Studies may be conducted in any healthcare setting, published between June 2006 and 31 December 2021. We will perform a qualitative synthesis of included studies using two parallel methods: (i) directed content analysis based on an already developed coding manual; and (ii) unsupervised textual analysis using Leximancer® topic modelling software. Other: We will disseminate results of the review using peer reviewed publications, conference and seminar presentations, and social media (Facebook and Twitter) channels. The primary source of funding is the National Institute for Health Research ARC North Thames. No human subjects or personal data are involved and no ethical issues are anticipated

Early detection of brain metastases in a supervised exercise program for patients with advanced breast cancer : A case report

Introduction Around 25% of metastatic breast cancer (mBC) patients develop brain metastases, which vastly affects their overall survival and quality of life. According to the current clinical guidelines, regular magnetic resonance imaging screening is not recommended unless patients have recognized central nervous system–related symptoms. Patient Presentation The patient participated in the EFFECT study, a randomized controlled trial aimed to assess the effects of a 9-month structured, individualized and supervised exercise intervention on quality of life, fatigue and other cancer and treatment-related side effects in patients with mBC. She attended the training sessions regularly and was supervised by the same trainer throughout the exercise program. In month 7 of participation, her exercise trainer detected subtle symptoms (e.g., changes in movement pattern, eye movement or balance), which had not been noticed or reported by the patient herself or her family, and which were unlikely to have been detected by the oncologist or other health care providers at that point since symptoms were exercise related. When suspicion of brain metastases was brought to the attention of the oncologist by the exercise trainer, the response was immediate, and led to early detection and treatment of brain metastases. Conclusion and clinical implications The brain metastases of this patient were detected earlier due to the recognition of subtle symptoms detected by her exercise trainer and the trust and rapid action by the clinician. The implementation of physical exercise programs for cancer patients requires well-trained professionals who know how to recognize possible alterations in patients and also, good communication between trainers and the medical team to enable the necessary actions to be taken

Simulation and Control Lab Development for Power and Energy Management for NASA Manned Deep Space Missions

The development of distributed hierarchical and agent-based control systems will allow for reliable autonomous energy management and power distribution for on-orbit missions. Power is one of the most critical systems on board a space vehicle, requiring quick response time when a fault or emergency is identified. As NASAs missions with human presence extend beyond low earth orbit autonomous control of vehicle power systems will be necessary and will need to reliably function for long periods of time. In the design of autonomous electrical power control systems there is a need to dynamically simulate and verify the EPS controller functionality prior to use on-orbit. This paper presents the work at NASA Glenn Research Center in Cleveland, Ohio where the development of a controls laboratory is being completed that will be utilized to demonstrate advanced prototype EPS controllers for space, aeronautical and terrestrial applications. The control laboratory hardware, software and application of an autonomous controller for demonstration with the ISS electrical power system is the subject of this paper

An application of student learner profiling: comparison of students in different degree programs

The ability to profile students by assessing their approaches to study and conceptions of discipline is valuable for educators at all levels. Detailed analysis of these factors has been undertaken in science disciplines at the University of Sydney to (i) determine the academic profiles of students in the cohorts we teach; and (ii) determine whether our teaching practices and the learning environment we provide stimulate the development of the student profiles we regard as desirable in a science graduate and, ultimately, in the professional scientist. At tertiary level, this analysis is complicated by the various degree programs that intersect in compulsory or service units of study, particularly at the first year level, and it is therefore essential that we understand the extent to which we are serving students in all degree programs. Our first year biology classes are large (up to 1500) and the unit Concepts in Biology (semester 1) is both a pre-requisite for further study in Biology and a compulsory service course for a range of degree programs (e.g. Medical Biotechnology, Pharmacy, Nutrition). We performed a cluster analysis on survey data combining measures of student approaches to study, conceptions of biology and performance in assessment after completing one semester of biology and examined the proportions of students in each of four clusters: two ‘positive’ (deep achievers and enthusiastic achievers) and two with less desirable profiles (surface strategists and neutral). Chi-squared analysis indicated no significant difference in distribution of students enrolled in Arts, Science and Pharmacy between the four clusters (p = 0.104). A significant difference was, however, detected at the level of science degree program (p < 0.002), with the Bachelor of Science (Marine) and Bachelor of Science contributing most to the difference. Implications of our analysis and further applications of learner profiling for informing improvements in science curricula, teaching and assessment will be discussed