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3Background: 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)
DOCUMENT
Background: Cancer survivors face various short- and long-term consequences of their disease and treatment, which may negatively impact their quality of life. Healthy lifestyle changes can have a positive effect on these consequences but current counselling does not sufficiently meet their needs. This study explores the experiences and needs of cancer survivors regarding lifestyle counselling. Methods: A qualitative design comprising semi-structured interviews was used. We conducted 18 interviews with Dutch adult cancer survivors with various types of cancer, including people with limited health literacy. The data were analysed using reflexive thematic analysis. This study is part of the GLINK project, which aims to develop and evaluate an integrated lifestyle intervention for cancer survivors. Results: Dutch cancer survivors experienced current lifestyle counselling as fragmented and not structurally embedded, which requires them to be proactive in seeking support. Participants expressed a desire for stronger integration of lifestyle counselling within oncological (after)care, with clear information on available options and improved accessibility in terms of location, contact with professionals, and referral pathways. They reported a need for personalised, flexible support from professionals specialized in oncology, focusing on individual needs to ensure that patients feel seen and heard. Conclusions: This study provides insights into how lifestyle counselling for cancer survivors can be improved from the patients’ perspective. These findings can enhance the initiation of lifestyle conversations and referral processes and serve as a foundation for developing an integrated lifestyle intervention for cancer survivors.
DOCUMENT
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’.
DOCUMENT
Prostate cancer (PCA) has the highest prevalence for men in the western world. Besides general symptoms, these patients experience specific problems like erectyle dysfunction and urinary incontinence, which occur after treatment and may result in feelings of distress. PCA patients express a need for supportive care, although they are often not participating in the offered supportive care interventions. To study determinants of care seeking behavior, the influence of patient’s supportive care needs was assessed with the SCNS. With the ASE-model, we studied whether their attitude about supportive care, perceived social support and self-efficacy influence care seeking. Furthermore also the influence of external factors, e.g. distress, biographical and medical factors, previous experience with and evaluation of supportive care was studied. Methods A quantitative, cross-sectional study with a convenience sample of patients who completed a questionnaire was conducted. The SCNS measured care needs. Patient’s attitude towards care seeking, perceived social support and self-efficacy were assessed as well as several external factors. Results We included 87 patients, who returned a questionnaire by email or post. Pearson’s correlation coefficients showed significant associations between the future supportive care use and attitude, needs, and external factors depression, anxiety, previous experience with and evaluation of supportive care and age. Results of multiple regression analysis pointed out that psychological, physical needs and depression are the main determinants for future supportive care use. Conclusion The results show psychological, physical needs and depression are more important determinants of future supportive care use than ASE-factor attitude towards care seeking, anxiety, previous psychosocial care use, satisfaction with care and age. Results indicated that men look for expert information in more than one third of all cases. Urology/oncology nurses and health-care professionals could use this information for patient centered referrals and to further develop needs and preference based interventions.
DOCUMENT
Purpose
Cancer‐related fatigue is one of the most distressing side effects of childhood cancer treatment. Physical activity can decrease fatigue and has positive effects on other health outcomes. Most research on physical activity pertains to adults, and the few studies that focus on children have limited follow‐up time. This study evaluates cancer‐related fatigue in children and its association with physical activity over a one‐year time period.
Methods
Sixty‐eight children with cancer (7–18 years) were recruited during or within the first year after treatment. Physical activity (Actical activity monitor) and cancer‐related fatigue (Pediatric Quality‐of‐Life Questionnaire Multidimensional Fatigue Scale (PedsQL‐MFS), self‐ and parent‐ reports) were assessed at baseline, 4 months, and 12 months. PedsQL‐MFS scores were compared with Dutch norms. Longitudinal association of cancer‐related fatigue with physical activity was evaluated (No. NTR 1531).
Results
Generally, PedsQL‐MFS scores were worse than norms at baseline and 4 months, and recovered by 12 months except for the parent‐proxy scores in adolescents. Younger children (≤12 years) self‐reported comparable or better scores than norms. Physical activity generally improved over time, but patients mostly remained sedentary. During follow‐up, increased physical activity was associated with less cancer‐related fatigue.
Conclusion
Cancer‐related fatigue in children improves over time, and increased physical activity is associated with less cancer‐related fatigue. Given the sedentary lifestyle of this population, the positive effect of physical activity on cancer‐related fatigue, and the many other health benefits of an active lifestyle, it is important to stimulate physical activity in childhood cancer patients and survivors.
DOCUMENT
Background Ethnic differences in colon cancer (CC) care were shown in the United States, but results are not directly applicable to European countries due to fundamental healthcare system differences. This is the first study addressing ethnic differences in treatment and survival for CC in the Netherlands. Methods Data of 101,882 patients diagnosed with CC in 1996–2011 were selected from the Netherlands Cancer Registry and linked to databases from Statistics Netherlands. Ethnic differences in lymph node (LN) evaluation, anastomotic leakage and adjuvant chemotherapy were analysed using stepwise logistic regression models. Stepwise Cox regression was used to examine the influence of ethnic differences in adjuvant chemotherapy on 5-year all-cause and colorectal cancer-specific survival. Results Adequate LN evaluation was significantly more likely for patients from ‘other Western’ countries than for the Dutch (OR 1.09; 95% CI 1.01–1.16). ‘Other Western’ patients had a significantly higher risk of anastomotic leakage after resection (OR 1.24; 95% CI 1.05–1.47). Patients of Moroccan origin were significantly less likely to receive adjuvant chemotherapy (OR 0.27; 95% CI 0.13–0.59). Ethnic differences were not fully explained by differences in socioeconomic and hospital-related characteristics. The higher 5-year all-cause mortality of Moroccan patients (HR 1.64; 95% CI 1.03–2.61) was statistically explained by differences in adjuvant chemotherapy receipt. Conclusion These results suggest the presence of ethnic inequalities in CC care in the Netherlands. We recommend further analysis of the role of comorbidity, communication in patient-provider interaction and patients’ health literacy when looking at ethnic differences in treatment for CC.
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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.
DOCUMENT
Cancer and its treatments cause significant changes in sexuality that affect the quality of life of both patients and their partners. As these issues are not always discussed with healthcare professionals, cancer patients turn to online health communities to find answers to questions or for emotional support pertaining to sexual issues. By using a discursive psychological perspective, we explore the social actions that participants in online health forums perform when discussing sexuality. Data were collected by entering search terms in the search bars of three online health forums. Our analysis of 213 threads, containing 1,275 posts, provides insight into how participants who present themselves as women with cancer account for their sexual issues and, in doing so, orient to two intertwined norms: Having untroubled sex is part of a couple’s relationship, and male partners are entitled to having untroubled sex. We discuss the potential harmful consequences of orienting to norms related to sexual behaviour. Yet, our findings can also help healthcare professionals in broaching the topic of sexuality in conversations with cancer patients. The insights of this study into what female patients themselves treat as relevant can assist health professionals in better aligning with patients’ interactional concerns.
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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.
MULTIFILE
Prostate Cancer Diagnosis and Treatment Enhancement through the Power of Big Data in Europe (PIONEER) is a European network of excellence for big data in prostate cancer. PIONEER brings together 34 private and public stakeholders from 9 countries in one multidisciplinary research consortium with the aim of positively transforming the field of prostate cancer clinical care by answering pressing questions related to prostate cancer screening, diagnosis and treatment. PIONEER has developed a unique state-of-the-art big data analytic platform by integrating existing data sources from patients with prostate cancer. PIONEER leveraged this platform to address prioritized research questions, filling knowledge gaps in the characterization, management and core outcomes of prostate cancer across the different disease stages. The network has benefited from sustained patient and stakeholder involvement and engagement, but many challenges remain when using real-world data for big data projects. To continue to advance prostate cancer care, data need to be available, suitable methodologies should be selected and mechanisms for knowledge sharing must be in place. Now acting as the prostate cancer arm of the European Association of Urology’s new endeavour, UroEvidenceHub, PIONEER maintains its goal of maximizing the potential of big data to improve prostate cancer care.
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