Improving the quality and efficiency of follow-up after curative treatment for breast cancer – rationale and study design of the MaCare trial

BACKGROUND: After curative treatment for breast cancer women frequently attend scheduled follow-up examinations. Usually the follow-up is most frequent in the first 2–3 years (2–4 times a year); thereafter the frequency is reduced to once a year in most countries. Its main aim is to detect local disease recurrence, or a second primary breast cancer, but also to provide information and psychosocial support. However, the cost-effectiveness of these frequent visits is under much debate, leading to a search for less intensive and more cost-effective follow-up strategies. In this paper the design of the MaCare trial is described. This trial compares the cost-effectiveness of four follow-up strategies for curatively treated breast cancer patients. We investigate the costs and effects of nurse-led telephone follow-up and a short educational group programme. METHODS/DESIGN: The MaCare trial is a multi centre randomised clinical trial in which 320 breast cancer patients are randomised into four follow-up strategies, focussed on the first 18 months after treatment: 1) standard follow-up; 2) nurse-led telephone follow-up; 3) arm 1 with the educational group programme; 4) arm 2 with the educational group programme. Data is collected at baseline and 3, 6, 12 and 18 months after treatment. The primary endpoint of the trial is cancer-specific quality of life as measured by the global health/QoL scale of the EORTC QLQ-C30. Secondary outcomes are perceived feelings of control, anxiety, patients' satisfaction with follow-up and costs. A cost-effectiveness analysis will be performed from a societal perspective. DISCUSSION: Reduced follow-up strategies for breast cancer have not yet been widely applied in clinical practice. Improvement of psychosocial support and information to patients could lead to a better acceptance of reduced follow-up. The MaCare trial combines a reduced follow-up strategy with additional psychosocial support. Less frequent follow-up can reduce the burden on medical specialists and costs. The educational group programme can improve QoL of patients, but also less frequent follow-up can improve QoL by reducing the anxiety experienced for each follow-up visit. Results of the trial will provide knowledge on both costs and psychosocial aspects regarding follow-up and are expected in 2009

Mobile health apps to facilitate self-care: a qualitative study of user experiences

Objective: Consumers are living longer, creating more pressure on the health system and increasing their requirement for self-care of chronic conditions. Despite rapidly-increasing numbers of mobile health applications (‘apps’) for consumers’ self-care, there is a paucity of research into consumer engagement with electronic self-monitoring. This paper presents a qualitative exploration of how health consumers use apps for health monitoring, their perceived benefits from use of health apps, and suggestions for improvement of health apps. Materials and Methods: ‘Health app’ was defined as any commercially-available health or fitness app with capacity for self-monitoring. English-speaking consumers aged 18 years and older using any health app for self-monitoring were recruited for interview from the metropolitan area of Perth, Australia. The semi-structured interview guide comprised questions based on the Technology Acceptance Model, Health Information Technology Acceptance Model, and the Mobile Application Rating Scale, and is the only study to do so. These models also facilitated deductive thematic analysis of interview transcripts. Implicit and explicit responses not aligned to these models were analyzed inductively.Results: Twenty-two consumers (15 female, seven male) participated, 13 of whom were aged 26–35 years. Eighteen participants reported on apps used on iPhones. Apps were used to monitor diabetes, asthma, depression, celiac disease, blood pressure, chronic migraine, pain management, menstrual cycle irregularity, and fitness. Most were used approximately weekly for several minutes per session, and prior to meeting initial milestones, with significantly decreased usage thereafter. Deductive and inductive thematic analysis reduced the data to four dominant themes: engagement in use of the app; technical functionality of the app; ease of use and design features; and management of consumers’ data. Conclusions: The semi-structured interviews provided insight into usage, benefits and challenges of health monitoring using apps. Understanding the range of consumer experiences and expectations can inform design of health apps to encourage persistence in self-monitoring

Hybridization and adaptive evolution of diverse Saccharomyces species for cellulosic biofuel production

Additional file 15. Summary of whole genome sequencing statistics

Aanbestedingsrecht [Vijfde druk]

bookCoherent privaatrech

Desired decision-making role and treatment satisfaction among trans people during medical transition: results from the ENIGI follow-up study

BACKGROUND: Shared decision making (SDM) is particularly important in transition-related medical interventions (TRMIs) given the nature of treatment and history of gatekeeping in transgender health care. Yet few studies have investigated trans people's desired decision-making role within TRMI and factors that influence these desires. AIMS: The study investigated trans people's desired level of decision making during medical transition as well as possible sociodemographic predictors and correlations between decision-making desires and satisfaction with treatment. METHODS: Data were collected from a clinical sample from 3 trans health care centers, as part of the larger ENIGI study. The data consisted of 568 trans individuals (60.2% assigned male at birth) 20 to 82 years of age (mean age = 38.58 years) who took part in the study 4 to 6 years after initial clinical contact. Binary logistic regressions were conducted to determine whether independent variables predicted group membership in decision-making role subgroups while a Spearman rank-order correlation was conducted to determine the relationship between desired decision-making involvement and satisfaction with care. OUTCOMES: Main measures were desired decision-making role, satisfaction with treatment, age, education level, country of residence, treatment status, individual treatment progress score (ITPS), gender identity, and sex assigned at birth. RESULTS: The vast majority of participants wanted to make medical decisions themselves. Age, education level, country of residence, treatment status, gender identity, and sex assigned at birth showed no significant effects in desired level of decision making, while the ITPS neared significance. Satisfaction with treatment was overall very high. For participants assigned male at birth, desire for a more active role in decision making was negatively correlated with satisfaction of labia surgery. CLINICAL IMPLICATIONS: A desired decision-making role cannot be predicted based on the trans person's sociodemographic characteristics. More involvement from health professionals addressing medical information and education obligations may be needed when offering surgical construction of labia to individuals assigned male at birth. STRENGTHS AND LIMITATIONS: This study builds on the few existing analyses of desired levels of decision-making role among trans people during transition. It is the first to investigate the role of education level and treatment status/ITPS on the desire of decision-making role. Gender identity and influence of nonbinary identity were not investigated for treatment satisfaction as these items were presented based on sex assigned at birth. CONCLUSION: This study highlights that trans people in 3 European trans health care centers during medical transition desire a more active role in decision making. Satisfaction with treatment received was overall very high

Follow-up after curative treatment for breast cancer: why do we still adhere to frequent outpatient clinic visits?

Follow-up after curative treatment for breast cancer consists of frequent outpatient clinic visits, scheduled at regular intervals. Its aim is primarily to detect local disease recurrence, or a second primary breast cancer, but also to provide information and psychosocial support. The cost-effectiveness of these frequent visits is being questioned however, leading to a search for less intensive follow-up strategies, such as follow-up by the general practitioner, patient-initiated or nurse-led follow-up or contact by telephone. These strategies are generally considered to be safe, but they are not yet widely accepted in clinical practice. Since brief interventions based on self-education and information have been shown to be able to improve quality of life, we hypothesise that these interventions may lead to a better acceptance of reduced follow-up by both patients and professionals

Experienced barriers of care within European treatment seeking transgender individuals: A multicenter ENIGI follow-up study

Objectives: To evaluate the experienced barriers of care for treatment-seeking trans individuals (TSTG) in three large European clinics. Methods: An online follow-up questionnaire was filled out by 307 TSTG individuals as part of the research protocol of the European Network for the Investigation of Gender Incongruence (ENIGI). Data was collected during follow-up in 2017/2018, around 5 years after participants had their initial clinical appointments in Ghent (Belgium), Amsterdam (the Netherlands), or Hamburg (Germany). Background characteristics, country, treatment characteristics and mental health were analyzed in relation to experienced barriers of care (EBOC, measured though agreement with statements). Results: The majority of participants reported various EBOC, oftentimes more than one. The most-frequently reported EBOCs pertained to the lack of family and friends' support (28.7%, n = 88) and travel time and costs (27.7%, n = 85), whereas around one-fifth felt hindered by treatment protocols. Also, a significant share expressed the feeling that they had to convince their provider they needed care and/or express their wish in such way to increase their likelihood of receiving care. A higher number of EBOCs reported was associated with more mental health problems, lower income and female gender. Conclusions: A substantial number of TSTG individuals within three European health care systems experiences EBOCs. EBOCs relate to both personal and systemic characteristics. These findings can help health care providers and centers to improve care. More research must be done to better understand the diversity among TSTG individuals and the corresponding barriers experienced. Supplemental data for this article is available online at https://doi.org/10.1080/26895269.2021.196440

Experienced barriers of care within European treatment seeking transgender individuals: A multicenter ENIGI follow-up study

Objectives: To evaluate the experienced barriers of care for treatment-seeking trans individuals (TSTG) in three large European clinics. Methods: An online follow-up questionnaire was filled out by 307 TSTG individuals as part of the research protocol of the European Network for the Investigation of Gender Incongruence (ENIGI). Data was collected during follow-up in 2017/2018, around 5 years after participants had their initial clinical appointments in Ghent (Belgium), Amsterdam (the Netherlands), or Hamburg (Germany). Background characteristics, country, treatment characteristics and mental health were analyzed in relation to experienced barriers of care (EBOC, measured though agreement with statements). Results: The majority of participants reported various EBOC, oftentimes more than one. The most-frequently reported EBOCs pertained to the lack of family and friends’ support (28.7%, n = 88) and travel time and costs (27.7%, n = 85), whereas around one-fifth felt hindered by treatment protocols. Also, a significant share expressed the feeling that they had to convince their provider they needed care and/or express their wish in such way to increase their likelihood of receiving care. A higher number of EBOCs reported was associated with more mental health problems, lower income and female gender. Conclusions: A substantial number of TSTG individuals within three European health care systems experiences EBOCs. EBOCs relate to both personal and systemic characteristics. These findings can help health care providers and centers to improve care. More research must be done to better understand the diversity among TSTG individuals and the corresponding barriers experienced. Supplemental data for this article is available online at https://doi.org/10.1080/26895269.2021.1964409

Physiological and transcriptional responses of anaerobic chemostat cultures of Saccharomyces cerevisiae subjected to diurnal temperature cycles

Diurnal temperature cycling is an intrinsic characteristic of many exposed microbial ecosystems. However, its influence on yeast physiology and the yeast transcriptome has not been studied in detail. In this study, 24-h sinusoidal temperature cycles, oscillating between 12°C and 30°C, were imposed on anaerobic, glucose-limited chemostat cultures of Saccharomyces cerevisiae. After three diurnal temperature cycles (DTC), concentrations of glucose and extracellular metabolites as well as CO2 production rates showed regular, reproducible circadian rhythms. DTC also led to waves of transcriptional activation and repression, which involved one-sixth of the yeast genome. A substantial fraction of these DTC-responsive genes appeared to respond primarily to changes in the glucose concentration. Elimination of known glucose-responsive genes revealed an overrepresentation of previously identified temperature-responsive genes as well as genes involved in the cell cycle and de novo purine biosynthesis. In-depth analysis demonstrated that DTC led to a partial synchronization of the cell cycle of the yeast populations in chemostat cultures, which was lost upon release from DTC. Comparison of DTC results with data from steady-state cultures showed that the 24-h DTC was sufficiently slow to allow S. cerevisiae chemostat cultures to acclimate their transcriptome and physiology at the DTC temperature maximum and to approach acclimation at the DTC temperature minimum. Furthermore, this comparison and literature data on growth rate-dependent cell cycle phase distribution indicated that cell cycle synchronization was most likely an effect of imposed fluctuations of the relative growth rate (?/?max) rather than a direct effect of temperature.BT/BiotechnologyApplied Science