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: Head and neck cancer (HNC) treatment often leads to physical and psychosocial impairments. Rehabilitation can overcome these limitations and improve quality of life. The aim of this study is to obtain an overview of rehabilitation care for HNC, and to investigate factors influencing rehabilitation provision, in Dutch HNC centers, and to some extent compare it to other countries. Methods: An online survey, covering five themes: organizational structure; rehabilitation interventions; financing; barriers and facilitators; satisfaction and future improvements, among HNC healthcare- and financial professionals of Dutch HNC centers. Results: Most centers (86%) applied some type of rehabilitation care, with variations in organizational structure. A speech language therapist, physiotherapist and dietitian were available in all centers, but other rehabilitation healthcare professionals in less than 60%. Facilitators for providing rehabilitation services included availability of a contact person, and positive attitude, motivation, and expertise of healthcare professionals. Barriers were lack of reimbursement, and patient related barriers including comorbidity, travel (time), low health literacy, limited financial capacity, and poor motivation. Conclusion: Although all HNC centers included offer rehabilitation services, there is substantial practice variation, both nationally and internationally. Factors influencing rehabilitation are related to the motivation and expertise of the treatment team, but also to reimbursement aspects and patient related factors. More research is needed to investigate the extent to which practice variation impacts individual patient outcomes and how to integrate HNC rehabilitation into routine clinical pathways.
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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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Purpose: The increasing number of cancer survivors has heightened demands on hospital-based follow-up care resources. To address this, involving general practitioners (GPs) in oncological follow-up is proposed. This study explores secondary care providers’ views on integrating GPs into follow-up care for curatively treated breast and colorectal cancer survivors. Methods: A qualitative exploratory study was conducted using semi-structured interviews with Dutch medical specialists and nurse practitioners. Interviews were recorded, transcribed verbatim, and analyzed using thematic analysis by two independent researchers. Results: Fifteen medical specialists and nine nurse practitioners participated. They identified barriers such as re-referral delays, inexperience to perform structured follow-up, and worries about the lack of oncological knowledge among GPs. Benefits included the GPs’ accessibility and their contextual knowledge. For future organization, they emphasized the need for hospital logistics changes, formal GP training, sufficient case-load, proper staffing, remuneration, and time allocation. They suggested that formal GP involvement should initially be implemented for frail older patients and for prevalent cancer types. Conclusions: The interviewed Dutch secondary care providers generally supported formal involvement of primary care in cancer follow-up. A well-organized shared-care model with defined roles and clear coordination, supported by individual patients, was considered essential. This approach requires logistics adaptation, resources, and training for GPs. Implications for cancer survivors: Integrating oncological follow-up into routine primary care through a shared-care model may lead to personalized, effective, and efficient care for survivors because of their long-term relationships with GPs.
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PurposeTo support the development and implementation of exercise programming for people with prostate cancer (PC), we investigated their views on exercise.MethodsOnline survey with open recruitment. We collected data on clinical and sociodemographic variables, experiences with exercise advice, outcome expectations, and preferences. We explored determinants of (1) having been counselled about exercise and (2) preferring supervised exercise.ResultsThe survey was completed by 171 patients (mean age = 70 years, SD = 6.5) from all PC treatment pathways. Sixty-three percent of the respondents reported never having been informed about the potential benefits of exercise. Forty-nine percent preferred exercise to be supervised. Respondents generally reported a positive attitude towards exercise. Seventy-four percent indicated barriers to exercising, including fatigue and lack of access to specific programmes. Outcome expectations were generally positive but moderately strong. Receiving hormonal therapy and younger age were significantly associated with having received exercise advice. Being insured and having higher fatigue levels contributed significantly to the preference for supervised exercise.ConclusionDutch people with PC report receiving insufficient effective exercise counselling. Yet, they are open to exercise and expect exercise to improve their health, although they experience various barriers that limit their ability to exercise.Implications for Cancer SurvivorsThe moderate outcome expectations for exercise of people with PC and their limited recall of exercise counselling highlight the need for better integration of exercise in clinical pathways. The lack of access to specific programming limits the use of evidence-based exercise programmes for people with PC.
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Multiple organizations around the world have issued evidence-based exercise guidance for patients with cancer and cancer survivors. Recently, the American College of Sports Medicine has updated its exercise guidance for cancer prevention as well as for the prevention and treatment of a variety of cancer health-related outcomes (eg, fatigue, anxiety, depression, function, and quality of life). Despite these guidelines, the majority of people living with and beyond cancer are not regularly physically active. Among the reasons for this is a lack of clarity on the part of those who work in oncology clinical settings of their role in assessing, advising, and referring patients to exercise. The authors propose using the American College of Sports Medicine's Exercise Is Medicine initiative to address this practice gap. The simple proposal is for clinicians to assess, advise, and refer patients to either home-based or community-based exercise or for further evaluation and intervention in outpatient rehabilitation. To do this will require care coordination with appropriate professionals as well as change in the behaviors of clinicians, patients, and those who deliver the rehabilitation and exercise programming. Behavior change is one of many challenges to enacting the proposed practice changes. Other implementation challenges include capacity for triage and referral, the need for a program registry, costs and compensation, and workforce development. In conclusion, there is a call to action for key stakeholders to create the infrastructure and cultural adaptations needed so that all people living with and beyond cancer can be as active as is possible for them.
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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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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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Purpose: This study aimed to develop and pretest a systematic conversation approach for nurses to tailor aftercare to oncology patient's goals, unmet needs and wishes. Methods: We used an iterative developmental process for complex interventions: 1. Identifying problems 2. Identifying overall objectives 3. Designing the intervention 4. Pretesting and adapting the intervention. Results: The main results of the problem identification were: non-systematic and incomplete screening of potential issues, caveats in providing information, and shared decision-making. The overall objective formulated was: To develop a model for aftercare conversations based on shared goal-setting and decision-making. The conversation approach consists of four phases: 1. Preparation of the consultation including a questionnaire, 2. Shared goal-setting by means of a tool visualizing domains of life, and 3. Shared care planning by means of an overview of possible choices in aftercare, a database with health care professionals and a cancer survivorship care plan. 4. Evaluation. The results of the pretest revealed that the conversation approach needs to be flexible and tailored to the patient and practice setting, and embedded in the care processes. The conversation approach was perceived as enhancing patient-centeredness and leading to more in-depth consultations. Conclusion: The conversation approach was developed in co-creation with stakeholders. The results of the pretest revealed important implications and suggestions for implementation in routine care. The aftercare conversation approach can be used by nurses to provide tailored patient-centered evidence-based aftercare. Tailored aftercare should support oncology patient's goals, unmet needs and wishes. Further tailoring is needed.
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PurposeCancer-related cognitive impairment (CRCI) following chemotherapy is commonly reported in breast cancer survivors, even years after treatment. Data from preclinical studies suggest that exercise during chemotherapy may prevent or diminish cognitive problems; however, clinical data are scarce.MethodsThis is a pragmatic follow-up study of two original randomized trials, which compares breast cancer patients randomized to exercise during chemotherapy to non-exercise controls 8.5 years post-treatment. Cognitive outcomes include an online neuropsychological test battery and self-reported cognitive complaints. Cognitive performance was compared to normative data and expressed as age-adjusted z-scores.ResultsA total of 143 patients participated in the online cognitive testing. Overall, cognitive performance was mildly impaired on some, but not all, cognitive domains, with no significant differences between groups. Clinically relevant cognitive impairment was present in 25% to 40% of all participants, regardless of study group. We observed no statistically significant effect of exercise, or being physically active during chemotherapy, on long-term cognitive performance or self-reported cognition, except for the task reaction time, which favored the control group (β = -2.04, 95% confidence interval: -38.48; -2.38). We observed no significant association between self-reported higher physical activity levels during chemotherapy or at follow-up and better cognitive outcomes.ConclusionIn this pragmatic follow-up study, exercising and being overall more physically active during or after adjuvant chemotherapy for breast cancer was not associated with better tested or self-reported cognitive functioning, on average, 8.5 years after treatment. Future prospective studies are needed to document the complex relationship between exercise and CRCI in cancer survivors.
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