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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Background: Patient decision aids (PDAs) can support the treatment decision making process and empower patients to take a proactive role in their treatment pathway while using a shared decision-making (SDM) approach making participatory medicine possible. The aim of this study was to develop a PDA for prostate cancer that is accurate and user-friendly. Methods: We followed a user-centered design process consisting of five rounds of semi-structured interviews and usability surveys with topics such as informational/decisional needs of users and requirements for PDAs. Our userbase consisted of 8 urologists, 4 radiation oncologists, 2 oncology nurses, 8 general practitioners, 19 former prostate cancer patients, 4 usability experts and 11 healthy volunteers. Results: Informational needs for patients centered on three key factors: treatment experience, post-treatment quality of life, and the impact of side effects. Patients and clinicians valued a PDA that presents balanced information on these factors through simple understandable language and visual aids. Usability questionnaires revealed that patients were more satisfied overall with the PDA than clinicians; however, both groups had concerns that the PDA might lengthen consultation times (42 and 41%, respectively). The PDA is accessible on http://beslissamen.nl/. Conclusions: User-centered design provided valuable insights into PDA requirements but challenges in integrating diverse perspectives as clinicians focus on clinical outcomes while patients also consider quality of life. Nevertheless, it is crucial to involve a broad base of clinical users in order to better understand the decision-making process and to develop a PDA that is accurate, usable, and acceptable.
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Objective: Effective healthcare innovations are often not adopted and implemented. An implementation strategy based on facilitators and barriers for use as perceived by healthcare professionals could increase adoption rates. This study therefore aimed to identify the most relevant facilitators and barriers for use of an innovative breast cancer aftercare decision aid (PtDA) in healthcare practice. Methods: Facilitators and barriers (related to the PtDA, adopter and healthcare organisation) were assessed among breast cancer aftercare health professionals (n = 81), using the MIDI questionnaire. For each category, a backward regression analysis was performed (dependent = intention to adopt). All significant factors were then added to a final regression analysis to identify to most relevant determinants of PtDA adoption. Results: Expecting higher compatibility with daily practice and clinical guidelines, more positive outcomes of use, higher perceived relevance for the patient and increased self-efficacy were significantly associated with a higher intention to adopt. Self-efficacy and perceived patient relevance remained significant in the final model. Conclusions: Low perceived self-efficacy and patient relevance are the most important barriers for health professions to adopt a breast cancer aftercare PtDA. Practice implications: To target self-efficacy and perceived patient relevance, the implementation strategy could apply health professional peer champions.
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PURPOSE: Fatigue is a common and potentially disabling symptom in patients with cancer. It can often be effectively reduced by exercise. Yet, effects of exercise interventions might differ across subgroups. We conducted a meta-analysis using individual patient data of randomized controlled trials (RCTs) to investigate moderators of exercise intervention effects on cancer-related fatigue.METHODS: We used individual patient data from 31 exercise RCTs worldwide, representing 4,366 patients, of whom 3,846 had complete fatigue data. We performed a one-step individual patient data meta-analysis, using linear mixed-effect models to analyze the effects of exercise interventions on fatigue (z-score) and to identify demographic, clinical, intervention- and exercise-related moderators. Models were adjusted for baseline fatigue and included a random intercept on study level to account for clustering of patients within studies. We identified potential moderators by testing their interaction with group allocation, using a likelihood ratio test.RESULTS: Exercise interventions had statistically significant beneficial effects on fatigue (β= -0.17 [95% confidence interval (CI) -0.22;-0.12]). There was no evidence of moderation by demographic or clinical characteristics. Supervised exercise interventions had significantly larger effects on fatigue than unsupervised exercise interventions (βdifference= -0.18 [95%CI -0.28;-0.08]). Supervised interventions with a duration ≤12 weeks showed larger effects on fatigue (β= -0.29 [95% CI -0.39;-0.20]) than supervised interventions with a longer duration. CONCLUSIONS: In this individual patient data meta-analysis, we found statistically significant beneficial effects of exercise interventions on fatigue, irrespective of demographic and clinical characteristics. These findings support a role for exercise, preferably supervised exercise interventions, in clinical practice. Reasons for differential effects in duration require further exploration.
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PURPOSE OF REVIEW:The Scored Patient-Generated Subjective Global Assessment (PG-SGA) is used internationally as the reference method for proactive risk assessment (screening), assessment, monitoring and triaging for interventions in patients with cancer. This review aims to explain the rationale behind and data supporting the PG-SGA, and to provide an overview of recent developments in the utilization of the PG-SGA and the PG-SGA Short Form.RECENT FINDINGS:The PG-SGA was designed in the context of a paradigm known as 'anabolic competence'. Uniquely, the PG -SGA evaluates the patient's status as a dynamic rather than static process. The PG-SGA has received new attention, particularly as a screening instrument for nutritional risk or deficit, identifying treatable impediments and guiding patients and professionals in triaging for interdisciplinary interventions. The international use of the PG-SGA indicates a critical need for high-quality and linguistically validated translations of the PG-SGA.SUMMARY:As a 4-in-1 instrument, the PG-SGA can streamline clinic work flow and improve the quality of interaction between the clinician and the patient. The availability of multiple high-quality language versions of the PG-SGA enables the inclusion of the PG-SGA in international multicenter studies, facilitating meta-analysis and benchmarking across countries.
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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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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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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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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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Background: The majority of patients diagnosed with early-stage breast cancer are in a position to choose between having a mastectomy or lumpectomy with radiation therapy (breast-conserving therapy). Since the long-term survival rates for mastectomy and for lumpectomy with radiation therapy are comparable, patients’ informed preferences are important for decision-making. Although most clinicians believe that they do include patients in the decision-making process, the information that women with breast cancer receive regarding the surgical options is often rather subjective, and does not invite patients to express their preferences. Shared decision-making (SDM) is meant to help patients clarify their preferences, resulting in greater satisfaction with their final choice. Patient decision aids can be very supportive in SDM. We present the protocol of a study to β test a patient decision aid and optimise strategies for the implementation of SDM regarding the treatment of early-stage breast cancer in the actual clinical setting. Methods/design: This paper concerns a preimplementation and post-implementation study, lasting from October 2014 to June 2015. The intervention consists of implementing SDM using a patient decision aid. The intervention will be evaluated using qualitative and quantitative measures, acquired prior to, during and after the implementation of SDM. Outcome measures are knowledge about treatment, perceived SDM and decisional conflict. We will also conduct face-to-face interviews with a sample of these patients and their care providers, to assess their experiences with the implementation of SDM and the patient decision aid.
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