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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Patients diagnosed with esophageal cancer have to deal with the consequences, such as major impact on their physical status and quality of life. A digital self-management tool could be a solution to support these patients in their self-management during the peri-operative period. This dissertation resulted in a better understanding of patients' needs and desires for (digital) self-management support during pre- (and post-operative) care. In addition, a core set consisting of the most relevant topics for self-management was developed. Differences were found between esophageal cancer patients in their expectations and needs regarding self-management and eHealth for self-management support. It is important to apply a diversity of forms of support given the increased desire to provide person-centered care and the fact that no single approach will meet the needs of all patients at all times. The development of a new (digital) self-management intervention to support these patients can be based on the results of the various studies in this dissertation.
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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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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: In Europe, cancer is one of the predominant causes of mortality and morbidity among older people aged over 65. A diagnosis of cancer can imply a negative impact on the quality of life of the older patients and their families. Despite research examining the impact of cancer on the family, it is unclear what kind of information is available about the types of clinical practice towards older patients with cancer and their families. The aim is to determine the extent, range and variety of research in Europe describing health practices towards families of older patients with cancer and to identify any existing gaps in knowledge.METHODS: Scoping review.RESULTS: A total of 12 articles were included, showing that family interventions are generally based on end-of-life care. Most studies used a qualitative approach and involved different types of family member as participants. Most studies were conducted in the UK.CONCLUSIONS: Review findings revealed limited knowledge about health practices in Europe towards families with an older patient with cancer. This review indicates a need to increase family-focused research that examines health practices that meet the needs of families of older patients with cancer. Seeing cancer as a chronic disease, there is an urgent need for the implementation of family-focused interventions.
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In patients with cancer, weight loss can be related to simple starvation, disturbedmetabolism, or both. In patients with head and neck cancer (HNC), weight loss often is attributed to simple starvation because the obvious oral symptoms are known to hinder dietary intake. In this population, cachexia remains a relatively unexplored phenomenon. The aim of this study was to explore the prevalence of cachexia and precachexia in patients with newly diagnosed HNC.Methods: Fifty-nine patients with newly diagnosed HNC were asked to participate in the prospective cohort study, from which only baseline data were used in the analyses. Measurements were performed 1 wk before cancer treatment, that is, cachexia status by Fearon’s cancer-specific framework,dietary intake, muscle mass, muscle strength, and biochemical markers (C-reactive protein, albumin, hemoglobin, interleukin-1b, interleukin-6, and tumor necrosis factor-a) were assessed.Results: Data of 26 patients were included in the analyses (59% participation rate). Forty-two percent of the patients (n ¼ 12) were classified as cachectic and 15% (n ¼ 4) as precachectic. Muscle mass depletion was significantly more frequent in cachectic patients (67%) than in noncachectic patients (14%; P ¼ 0.014). No differences in inflammatory markers were observed betweencachectic and noncachectic patients.Conclusion: This exploratory study suggested a high prevalence of cachexia (42%) in patients with newly diagnosed HNC. Although a large study is needed to further elucidate the role of cachexia in patients with HNC, the data presented here suggest that cachexia is a common problem in this patient population, which has therapeutic and prognostic implications.
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Background: Esophageal cancer and curative treatment have a significant impact on the physical fitness of patients. Knowledge about the course of physical fitness during neoadjuvant therapy and esophagectomy is helpful to determine the needs for interventions during and after curative treatment. This study aims to review the current evidence on the impact of curative treatment on the physical fitness of patients with esophageal cancer. Methods: A systematic literature search of PubMed, Embase, Cinahl and the Cochrane Library was conducted up to March 29, 2021. We included observational studies investigating the change of physical fitness (including exercise capacity, muscle strength, physical activity and activities of daily living) from pre-to post-neoadjuvant therapy and/or from pre-to post-esophagectomy. Quality of the studies was assessed and a meta-analysis was performed using standardized mean differences. Results: Twenty-seven articles were included. After neoadjuvant therapy, physical fitness decreased significantly. In the first three months after surgery, physical fitness was also significantly decreased compared to preoperative values. Subgroup analysis showed a restore in exercise capacity three months after surgery in patients who followed an exercise program. Six months after surgery, there was limited evidence that exercise capacity restored to preoperative values. Conclusion: Curative treatment seems to result in a decrease of physical fitness in patients with esophageal cancer, up to three months postoperatively. Six months postoperatively, results were conflicting. In patients who followed a pre- or postoperative exercise program, the postoperative impact of curative treatment seems to be less.
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Rationale: Inadequate operationalisation of the multidimensial concept of malnutrition may result in inadequate evaluation of nutritional status. In this review we aimed to assess content validity of methods used to assess malnutrition in cancer patients, according to domains directly derived from European Society for Clinical Nutrition and Metabolism (ESPEN) and American Society for Parenteral and Enteral Nutrition (ASPEN) definitions for malnutrition. Methods: Studies on malnutrition in adult cancer patients published between 1999 and 2013 were considered eligible. Methods to assess malnutrition were classified using 13 indicators within three domains that the malnutrition definitions of ESPEN and ASPEN have in common: A) Nutrient balance; B) Changes in body shape, body area and body composition; and C) Body function.Content validity index per method (M-CVIA-C) was calculated by averaging indicator scores weighted per domain, quantifying to what extent the methods covered the construct of malnutrition. Acceptable content validity was defined as M-CVIA-C ≥0.80.Results: 40 Different methods within 166 articles were identified. Median M-CVIA-C was 0.22 (interquartile range: 0.08-0.53). None of the methods reached M-CVIA-C=0.80. Mini Nutritional Assessment (MNA; M-CVIA-C=0.75), Nutritional Screening Questionnaire (NSQ; M-CVIA-C=0.56) and Scored Patient-Generated Subjective Global Assessment (PG-SGA; M-CVIA-C=0.53) were responsible for the top 25% of M-CVIA-C scores. Conclusion: Content validity of methods that assess malnutrition in cancer patients varies widely and is unacceptable in terms of M-CVIA-C. MNA, NSQ and PG-SGA showed highest scores in terms of content validity. Conflict of interest: None.
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BACKGROUND: Assessment of malnutrition is important in cancer patients. The Scored Patient-Generated Subjective Global Assessment (PG-SGA), an instrument that enables interdisciplinary assessment of malnutrition and its risk factors, was not available in Dutch.OBJECTIVE: Translation and cultural adaption of the original English PG-SGA to the Dutch setting.METHODS: The PG-SGA was translated and culturally adapted, following the International Society for Pharmacoeconomics and Outcomes Research principles. Perceived content validity, comprehensibility, and difficulty were explored among a multidisciplinary sample of healthcare professionals and their cancer patients. Content validity, comprehensibility, and difficulty were operationalized by calculating item and scale indices. On scale level, indices of 0.80 to 0.90 were considered acceptable, and indices of 0.90 or greater were considered excellent.RESULTS: Consensus was reached on 91 and 8 differences in the forward and back translations, respectively. Scale Content Validity Index was 0.89. Scale Comprehensibility Index and Scale Difficulty Index of the patient-generated component of the PG-SGA were 0.99 and 0.96, respectively. Scale Comprehensibility Index and Scale Difficulty Index of the professional component were 0.81 and 0.55, respectively.CONCLUSIONS: Translation and cultural adaptation of the PG-SGA according to the International Society for Pharmacoeconomics and Outcomes Research principles resulted in a Dutch version that maintained the purpose, meaning, and format and have acceptable content validity. Now a Dutch version of the PG-SGA is available that is considered comprehensible and easy by patients, and comprehensible and relevant by professionals. However, the professional component was considered difficult by the PG-SGA-naive professionals, which indicates a need for training.IMPLICATIONS FOR PRACTICE: A similar systematic approach for future translations of the PG-SGA is recommended, to safeguard cultural equivalence.
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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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