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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Introduction: The implementation of oncology care pathways that standardize organizational procedures has improved cancer care in recent years. However, the involvement of “authentic” patients and caregivers in quality improvement of these predetermined pathways is in its infancy, especially the scholarly reflection on this process. We, therefore, aim to explore the multidisciplinary challenges both in practice, when cancer patients, their caregivers, and a multidisciplinary team of professionals work together on quality improvement, as well as in our research team, in which a social scientist, health care professionals, health care researchers, and experience experts design a research project together. Methods and design: Experience-based co-design will be used to involve cancer patients and their caregivers in a qualitative research design. In-depth open discovery interviews with 12 colorectal cancer patients, 12 breast cancer patients, and seven patients with cancer-associated thrombosis and their caregivers, and focus group discussions with professionals from various disciplines will be conducted. During the subsequent prioritization events and various co-design quality improvement meetings, observational field notes will be made on the multidisciplinary challenges these participants face in the process of co-design, and evaluation interviews will be done afterwards. Similar data will be collected during the monthly meetings of our multidisciplinary research team. The data will be analyzed according to the constant comparative method. Discussion: This study may facilitate quality improvement programs in oncologic care pathways, by increasing our real-world knowledge about the challenges of involving “experience experts” together with a team of multidisciplinary professionals in the implementation process of quality improvement. Such co-creation might be challenging due to the traditional paternalistic relationship, actual disease-/treatment-related constraints, and a lack of shared language and culture between patients, caregivers, and professionals and between professionals from various disciplines. These challenges have to be met in order to establish equality, respect, team spirit, and eventual meaningful participation.
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PURPOSE: The purpose of the study is to identify demographic, clinical, lifestyle-related, and social-cognitive correlates of physical activity (PA) intention and behavior in head and neck cancer (HNC) survivors using the theory of planned behavior (TPB).METHODS: Data from two cross-sectional studies on correlates of PA in HNC survivors were pooled. Both studies used self-reports to assess PA and social-cognitive correlates. Potential correlates were collected via self-report or medical records. Univariable and multivariable multilevel linear mixed-effects models were built to identify correlates of PA intention and PA behavior (Z scores). Structural equation model analyses were conducted to study the full TPB model in one analysis, taking into account relevant covariates.RESULTS: In total, 416 HNC survivors were surveyed. Their mean (SD) age was 66.6 (9.4) years; 64% were men, and 78% were diagnosed with laryngeal cancer. The structural equation model showed that PA intention was significantly higher in HNC survivors with a history of exercising, who had a more positive attitude, subjective norm, and perceived behavioral control. Patients with higher PA intention, higher PBC, a lower age, and without unintentional weight loss or comorbidities had higher PA behavior. The model explained 22.9% of the variance in PA intention and 16.1% of the variance in PA behavior.CONCLUSIONS: Despite significant pathways of the TPB model, the large proportion variance in PA intention and behavior remaining unexplained suggests the need for better PA behavior (change) models to guide the development of PA promotion programs, particularly for the elderly. Such programs should be tailored to comorbidities and nutritional status.
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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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Introduction: Cancer survivors face physical, lifestyle, psychological, and psychosocial challenges. Despite the availability of aftercare services, survivors still have unmet needs. Digital aftercare programs may offer support, but their use is limited. This study aimed to examine what is needed to improve uptake and adoption of these programs. Additionally, it explored sociodemographic and clinical variables that may influence these needs. Methods: A mixed-methods approach was used, involving qualitative interviews and a questionnaire. The research was guided by the COM-B model of behaviour, which considers capability, opportunity, and motivation crucial for behaviour. Qualitative analysis was performed using the framework method. Statistical analyses involved descriptive statistics and regression analysis. Results: Fourteen cancer survivors were interviewed, and 213 participants completed the questionnaire. Findings indicated that most respondents had a positive or neutral attitude towards digital aftercare programs, believing these could address their cancer-related challenges. Still, only a small percentage had experience with them, and most were unaware of their existence. Many expressed a desire to be informed about them. Some were uncertain about their effectiveness. Others were concerned about a lack of reimbursement. No significant influence of the sociodemographic and clinical variables was found. Conclusion: Cancer survivors are generally positive about digital aftercare programs but are often unaware of their availability. Raising awareness, clarifying their value, and providing support and reimbursement could enhance uptake and adoption. Implications for Cancer Survivors: The current insights can help improve participation in digital aftercare programs, ultimately fostering health, well-being, and quality of life of cancer survivors.
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Screening for psychological distress in patients with cancer is currently being debated in the British Journal of Cancer. Screening has been recommended, as elevated levels of distress have been consistently observed and clinicians tend to overlook the need of psychological support (Carlson et al, 2012; Carlson et al, 2013; National Comprehensive Cancer Network, 2013). On the other hand, it has been argued that screening should not be implemented, as the true benefit of screening and subsequent treatment of psychological distress is far from being definitively proven (Coyne, 2013). Recent findings on human resilience in the face of potentially traumatic events (PTEs) provide a new perspective on detecting and treating psychological distress in patients with cancer. Humans show strong resilience in the face of potentially traumatic events, such as cancer diagnosis and treatment (Bonanno et al, 2011). This observation leads us to propose two alternative approaches towards detecting and treating psychological distress in patients with cancer: ‘screening for psychological distress’ and ‘supporting resilience and case finding’.
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INTRODUCTION: An optimal relative dose intensity (RDI) of adjuvant chemotherapy is associated with better survival in patients with breast cancer. Little is known about the role of physical fitness in attaining an adequate RDI in patients with early stage breast cancer. We investigated the association between pre-treatment physical fitness and RDI in this population.METHODS: We pooled individual patient data from two randomized exercise trials that studied exercise programs in early breast cancer: the PACES (n = 230) and the PACT (N = 204) study. Logistic regression models were used to evaluate the association between pre-treatment fitness and achieving an optimal RDI (≥85%). In addition, we added an interaction term to the model to explore the potential moderating effect of participating in an exercise program.RESULTS: Data were available for 419 patients (mean age at diagnosis 50.0 ± 8.6 years). In the total sample, lower pre-treatment physical fitness was associated with significantly lower odds of achieving ≥85% RDI: age-adjusted OR 0.66 [95%CI 0.46-0.94]. In patients allocated to the supervised exercise intervention during chemotherapy (n = 173), the association between pretreatment physical fitness and RDI was almost completely mitigated (OR 0.95 (95%CI 0.54-1.56)), while it was more pronounced in patients who received care as usual (n = 172, OR 0.31 (95%CI 0.13-0.63) pinteraction: 0.022).CONCLUSION: Early stage breast cancer patients with relatively lower levels of pretreatment physical fitness have lower odds of achieving an optimal dose of chemotherapy. Given that physical fitness is modifiable and our results suggest that following a moderate-to-high intensity exercise training during chemotherapy could improve treatment completion, clinicians should not refrain from referring patients to supportive exercise programs because of low fitness.
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The aim of the research reported in this thesis was to gain knowledge about the implementation of evidence‐based practice (EBP) in nursing to find a way to integrate shared decision making (SDM) with EBP in a chronic care environment in nursing, and to develop a strategy for an integrated approach of EBP and SDM in daily nursing practice in the individual aftercare for cancer survivors.
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Maintaining exercise behavior is crucial for cancer survivors, yet adherence to exercise recommendations remains low. This study explores the experiences and perspectives of community-working physical therapists and survivors of cancer regarding barriers and facilitators that support the maintenance of exercise behavior post-treatment.
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Malnutrition is a frequent problem in patients with head and neck cancer. Prevention or timely treatment of malnutrition isof great importance because deteriorated nutritional status can have a negative effect on clinical outcome in head andneck cancer patients.Malnutrition is a multidimensional problem, in which a nutritional disbalance causes loss of weight and muscle mass, eitheror not accompanied by inflammatory activity, resulting in functional decline.Thus far, little is known about the role of physical activity in both the development and treatment of malnutrition in cancerpatients. Although positive effects of exercise on fatigue and quality of life have been reported, the relationship betweenphysical activity and prevention and treatment of malnutrition needs to be further elucidated.In this presentation, current insights and hypotheses on the relationship between physical activity and nutritional status inpatients with cancer will be discussed.
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