Background: A patient decision aid (PtDA) can support shared decision making (SDM) in preference-sensitive care, with more than one clinically applicable treatment option. The development of a PtDA is a complex process, involving several steps, such as designing, developing and testing the draft with all the stakeholders, known as alpha testing. This is followed by testing in ‘real life’ situations, known as beta testing, and then finalising the definite version. Our aim was developing and alpha testing a PtDA for primary treatment of early stage breast cancer, ensuring that the tool is considered relevant, valid and feasible by patients and professionals. Methods: Our qualitative descriptive study applied various methods including face-to-face think-aloud interviews, a focus group and semi-structured telephone interviews. The study population consisted of breast cancer patients facing the choice between breast-conserving therapy with or without preceding neo-adjuvant chemotherapy and mastectomy, and professionals involved in breast cancer care in dedicated multidisciplinary breast cancer teams. Results: A PtDA was developed in four iterative test rounds, taking nearly 2 years, involving 26 patients and 26 professionals. While the research group initially opted for simplicity for the sake of implementation, the clinicians objected that the complexity of the decision could not be ignored. Other topics of concern were the conflicting views of professionals and patients regarding side effects, the amount of information and how to present it. Conclusion: The development was an extensive process, because the professionals rejected the simplifications proposed by the research group. This resulted in the development of a completely new draft PtDA, which took double the expected time and resources. The final version of the PtDA appeared to be well-appreciated by professionals and patients, although its acceptability will only be proven in actual practice (beta testing)
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Physical activity (PA) can have a substantial benefit in the prevention, treatment andrehabilitation of (breast) cancer. Wearable devices offer possibilities to monitor PA,to provide feedback and to set targets. Although the market for PA related wearabledevices is booming, the impact of these wearables is questionable. One of the mainconcerns is the limitations to address individual needs of users, among which specificgroups such as women with breast cancer. Through design, we see opportunities tostimulate for self-enhancement while encouraging PA after cancer treatment.Following a constructive design research approach, Aymée was designed. Aymée is asmart bra that changes its pattern based on the amount of PA. Through thisinteraction, Aymée aims to reinforce women recovering from breast cancer to feelgood about themselves and to be (more) active. In this paper, we describe both thedesign approach in co-creation with former breast-cancer patients, as well as firstresults. We also discuss implications for designing intelligent systems that address PAencouragement.
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Background: Follow‑up of curatively treated primary breast cancer patients consists of surveillance and aftercare and is currently mostly the same for all patients. A more personalized approach, based on patients’ individual risk of recurrence and personal needs and preferences, may reduce patient burden and reduce (healthcare) costs. The NABOR study will examine the (cost‑)effectiveness of personalized surveillance (PSP) and personalized aftercare plans (PAP) on patient‑reported cancer worry, self‑rated and overall quality of life and (cost‑)effectiveness. Methods: A prospective multicenter multiple interrupted time series (MITs) design is being used. In this design, 10 participating hospitals will be observed for a period of eighteen months, while they ‑stepwise‑ will transit from care as usual to PSPs and PAPs. The PSP contains decisions on the surveillance trajectory based on individual risks and needs, assessed with the ‘Breast Cancer Surveillance Decision Aid’ including the INFLUENCE prediction tool. The PAP contains decisions on the aftercare trajectory based on individual needs and preferences and available care resources, which decision‑making is supported by a patient decision aid. Patients are non‑metastasized female primary breast cancer patients (N= 1040) who are curatively treated and start follow‑up care. Patient reported outcomes will be measured at five points in time during two years of follow‑up care (starting about one year after treatment and every six months thereafter). In addition, data on diagnostics and hospital visits from patients’ Electronical Health Records (EHR) will be gathered. Primary outcomes are patient‑reported cancer worry (Cancer Worry Scale) and over‑all quality of life (as assessed with EQ‑VAS score). Secondary outcomes include health care costs and resource use, health‑related quality of life (as measured with EQ5D‑5L/SF‑12/EORTC‑QLQ‑C30), risk perception, shared decision‑making, patient satisfaction, societal participation, and cost‑effectiveness. Next, the uptake and appreciation of personalized plans and patients’ experiences of their decision‑making process will be evaluated. Discussion: This study will contribute to insight in the (cost‑)effectiveness of personalized follow‑up care and contributes to development of uniform evidence‑based guidelines, stimulating sustainable implementation of personalized surveillance and aftercare plans. Trial registration: Study sponsor: ZonMw. Retrospectively registered at ClinicalTrials.gov (2023), ID: NCT05975437.
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Societal changes force hospitals to improve their patient journeys. And although hospitals and hotels do differ on quite some aspects, there are also a lot of similarities. Moreover, hotels are known for doing their utmost to please their guests and to focus on their guest experiences. Therefore, hospitals are looking at what they can learn form the hotel industry. The Antoniushove is anxious to retain its high quality and where possible to improve it. That is why, together with the Hotelschool, they want to investigate where the patient journey can be improved. Medical students are ‘critical thinkers’ as they are educated in an academic and evidence based environment. Hotelschool students are generally seen as having excellent ‘soft skills’ like creativity and problem solving skills. Critical thinking and soft skills are both seen as important 21st century skills. This research is a first exploration of where there are possibilities for improvement on patient journeys. Couples existing of one medical student and one hotelschool student will form a team and follow breast and colorectal patients during their hospital visit. This combination of students has never occurred before in such a research. It will allow students from both backgrounds to look at the patient journey though the eyes of the other and to learn form each other’s competences. Main research methods to be applied will be shadowing, guided tours and interviews, all of course with informed consent. Medical staff from the Antoniushove and research experts form the hotelschool will supervise the research. This research is a preliminary research for a bigger research and should result in grant proposal for the follow-up research.
Regular physical activity is considered to be an important component of a healthy lifestyle that decreases the risk of coronary heart disease, diabetes mellitus type 2, hypertension, colon and breast cancer, obesity and other debilitating conditions. Physical activity can also improve functional capacity and therefore also the quality of life in older adults. Despite all these favorable aspects, a substantial part of the Dutch older adult population is still underactive or even sedentary. To change this for the better, the Groningen Active Living Model (GALM) was developed.Aim of GALM is to stimulate recreational sports activities in sedentary and underactive older adults in the 55-65 age band. After a door-to-door visit as part of an intensive recruitment phase, a fitness test was conducted followed by the GALM recreational sports program. This program was based on principles from evolutionary-biological play theory and insights fromsocial cognitive theory. The program was versatile in nature (e.g. softball, dance, self-defense, swimming, athletics, etc.) in two main ways: a) to improve compliance with the program different sports were offered, which was reported to be more appealing for older adults; b) by aiming at more components of motor fitness (e.g. strength, flexibility, speed, endurance and coordination). Between 1997 and 2005 more than 552,000 persons were visited door-to-door, over 55,700 were tested, and 41,310 participated in the GALM recreational sports program. The aim of the present thesis is to determine the effects of participation in the GALM recreational sports program on physical activity, health and fitness outcomes.Chapter 2 describes the effectiveness of the GALM recruitment in selecting and recruiting sedentary and underactive older adults. Three municipalities in the Netherlands were selected, and in every municipality four neighborhoods were included. Two of each of the four neighborhoods were randomly assigned as intervention and the others as control neighborhoods. In total, 8,504 persons were mailed and received a home visit. During this home visit the GALM recruitment questionnaire was collected on which the selection between sedentary/underactive and physically active older adults was based. Ultimately we succeeded inincluding 12.3% (315 of the 2,551 qualifying) of the older adults, 79.4% of whom could be indeed considered sedentary or underactive. The cost of successfully recruiting an older adult was estimated at $84.To assess the effects of a physical activity intervention on health and fitness and explain the results, it is necessary to know program characteristics regarding frequency, intensity, time and content of the activities. With respect to the GALM recreational sports activity program, the only unknown characteristic was intensity. Chapter 3 describes the intensity of this program systematically. Using heart rate monitors, data of 97 persons (mean age 60.1 yr) were collected in three municipalities. The mean intensity of all 15 GALM sessions was 73.7% of the predicted maximal heart rate. Six percent of the monitored heart rate time could be classified as light, 33% as moderate and 61% as hard. In summary, the GALM recreational sports program meets the 1998 ACSM recommendations for intensity necessary to improve cardiorespiratory fitness.Chapters 4 and 5 describe the effects of 6 and 12 months of participation in the GALM recreational sports program, and 181 persons were followed over time. Results after 6 months revealed only few significant between-group differences favoring the intervention group (i.e. sleep, diastolic blood pressure, perceived fitness score and grip strength). Changes in energyexpenditure for leisure-time physical activities (EELTPA) showed an increase in both study groups. From 6 to 12 months a decrease in EELTPA occurred in the intervention group and an increase in the control group. The significant positive time effects for the health outcomes (diastolic blood pressure, BMI, percentage of body fat) that were found after 6 months were diminishedfrom 6 to 12 months. However, the energy expenditure for recreational sports activities (EERECSPORT) demonstrated a continuous increase over 12 months. Parallel to this, significant main effects for time were found in performance-based fitness outcomes (i.e. simple reaction time, leg strength, flexibility of hamstrings and lower back, and aerobic endurance). After 12 months only a significant between-group difference for flexibility of the hamstrings andlower back was found, favoring the control group. In conclusion, a short-term increase in EELTPA was found with accompanying improvements in health outcomes that more or less disappeared in 6 to 12 months. In the long term, results showed a continuous increase in EERECSPORT and performance-based fitness. This latter increase is probably a reflection of the significantimprovement over time in EERECSPORT and the fact that recreational sports activities are of a higher intensity.Aerobic endurance is regarded as the most important component of motor fitness that is relevant for older adults to function independently. In Chapter 6, the development in aerobic endurance after 18 months of participation in the GALM recreational sports program was assessed by means of changes in heart rate during fixed submaximal exercise. Since both groups were comparable regarding changes in energy expenditure for physical activity after 6 months and testing confirmed this, both groups were combined and considered as one group. Multilevel analyses were conducted and models for change were developed. A significant decrease in heart rate over time was found at all walking speeds (4, 5, 6 and 7 km/h). The average decrease in heart rate was 5.5, 6.0, 10.0 and 9.0 beats/min for the 4, 5, 6 and 7 km/h walking speeds, respectively. The relative decrease varied from 5.1 to 7.4% relative to average heart rates at baseline. These results illustrate that participation in the GALM recreational sports program has a positive significant effect on aerobic endurance, and that the participants are able to perform at submaximal intensity more easily.Based on the overall results it can be concluded that this study contributes to the field in how to effectively recruit sedentary and underactive older adults and stimulate them to become and stay active in recreational sports activities. As far as we know, this recruitment in combination with the recreational sport program is not only unique but also effective toward increasing performance-based fitness in the long term. Short-term effects were found in other leisure-time activities and health outcomes. To further stimulate other leisure-time and probably health outcomes besides the favorable effects that were already seen, additional interventions that pay more attention to behavioral change in terms of how to integrate other activities besides sports activities are recommended.
