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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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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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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PurposeThis study investigates patients’ experiences of interaction with their healthcare professionals (HCPs) during cancer treatment and identifies elements that HCPs can utilize to improve cancer care provision.MethodsPubMed, CINAHL, PsycINFO, SCOPUS, and Embase were systematically searched for relevant studies published from January 2010 until February 2022. Qualitative studies investigating adult patients’ perspectives on their interaction with HCPs during cancer treatment were included. Studies conducted during the diagnosis or end-of-life treatment phase were excluded. Duplicate removal, screening, and quality appraisal were independently performed by four reviewers using Covidence.org. We performed a thematic meta-synthesis of qualitative data extracted from studies meeting the quality criteria in three stages: excerpts coding, codes categorization, and theme identification by merging similar categories.ResultsEighty-eight studies were included for quality appraisal, of which 50 papers met the quality inclusion criteria. Three themes were identified as essential to positively perceived patient-HCP interaction: “Support, respect and agency”, “Quantity, timing, and clarity of information”, and “Confidence, honesty, and expertise”. Overall, patients experienced positive interaction with HCPs when the approach was person-centered and when HCPs possessed strong interpersonal skills. However, patients expressed negative experiences when their preferences regarding communication and the type of personal support needed were ignored.ConclusionsThis meta-synthesis emphasizes the importance for HCPs to recognize all patients’ needs, including communication and personal support preferences, to provide high-quality care. Consequently, healthcare professionals should continuously train their verbal and non-verbal communication, empathy, active listening, and collaboration skills during their undergraduate and continuing education.
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BACKGROUND: As the number of cancer survivors is increasing, it is important to be able to offer exercise and physical activity (PA)-promoting interventions that are both effective and reasonably accessible. Internet-based interventions are typically less expensive and more accessible alternatives to on-site supervised interventions. Currently, little is known about the characteristics of nonparticipants in PA promotion trials in the cancer survivorship setting, both in general and specifically in trials using internet-supported interventions.OBJECTIVE: This study aims to gain insight into the characteristics associated with nonparticipation in a blended internet-based supported intervention trial to promote PA.METHODS: Breast and prostate cancer survivors, 3-36 months after primary curative treatment, were invited to participate in the PABLO trial; this trial compared an internet-based intervention to enhance PA levels, with or without additional support from a physical therapist, to usual care. Participants and nonparticipants were asked to complete a comprehensive questionnaire assessing sociodemographics, fatigue, and health-related quality of life. Baseline data for participants and nonparticipants were compared using the independent Student t test and chi-square test.RESULTS: The inclusion rate in the trial was 11.03% (137/1242). Of the nonparticipants, 13.95% (154/1104) completed the questionnaire. Participants were more highly educated (P=.04), had a paid job less often (P=.03), and were on sick leave more often (P=.03). They reported less PA per week, both moderate (P=.03) and vigorous (P<.01), before diagnosis and during leisure time (P<.01, effect size [ES]=0.44). They reported a significantly lower stage of change (P≤.01), lower self-efficacy (P<.01, ES=0.61), perceived barriers to PA (P<.01, ES=0.54), and more general fatigue (P<.01, ES=0.60). Participants reported lower health-related quality of life for most domains (ES ranging from 0.34 for mental health to 0.48 for social functioning). No significant differences were found for other sociodemographics, mood state, or attitudes toward or perceived social support for PA.CONCLUSIONS: The participants who self-selected for trial participation reported lower PA levels before diagnosis and a stronger need for support compared with nonparticipants. The trial thus included those patients who might benefit the most from internet-based supportive PA interventions.TRIAL REGISTRATION: Netherlands trial register NTR6911; https://www.trialregister.nl/trial/6733.
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BACKGROUND: Higher levels of physical activity (PA) after treatment are associated with beneficial effects on physical and psychosocial functioning of cancer survivors. However, survivors often do not meet the recommended levels of PA. In order to promote PA, we developed a closed internet-based program. The aim of the study is to evaluate the (cost-)effectiveness of an internet-based PA-promotion program, alone or combined with physiotherapy counselling, compared to usual care, on PA-levels of breast or prostate cancer survivors. In this multicenter randomised controlled trial (RCT), breast or prostate cancer survivors who completed their primary treatment 3-12 months earlier, will be randomised to either 6-months access to a fully-automated internet-based intervention alone, an internet-based intervention plus remote support by a physiotherapist, or a control group. The intervention is based on the Transtheoretical Model and includes personalized feedback, information, video's and assignments. Additionally, in a second arm, physiotherapy counselling is provided through monthly scheduled and on-demand telephone calls. The control group will receive usual care and a leaflet with PA guidelines.METHODS: At baseline, 6 and 12 months, the primary outcome (PA) will be measured during 7 consecutive days by accelerometers. Secondary outcomes are self-reported PA, fatigue, mood, health-related quality of life, and costs. The group differences for primary and secondary outcomes will be analyzed using linear mixed models.DISCUSSION: If proven to be (cost)effective, this internet-based intervention, either alone or in combination with telephone support, will be a welcome addition to previous RCT's.TRIAL REGISTRATION: Netherlands trial register (NTR6911), Date of trial registration: December 21, 2017.
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Background: We developed an Internet-based physical activity (PA) support program (IPAS), which is embedded in a patient portal. We evaluated the effectiveness and costs of IPAS alone (online only) or IPAS combined with physiotherapist telephone counselling (blended care), compared to a control group. Methods: Breast or prostate cancer survivors, 3–36 months after completing primary treatment, were randomized to 6-months access to online only, blended care, or a control group. At baseline and 6-month post-baseline, minutes of moderate-to-vigorous PA (MVPA) were measured by accelerometers. Secondary outcomes were self-reported PA, fatigue, mood, health-related quality of life, attitude toward PA, and costs. (Generalized) linear models were used to compare the outcomes between groups. Results: We recruited 137 survivors (participation rate 11%). We did not observe any significant between-group differences in MVPA or secondary outcomes. Adherence was rather low and satisfaction scores were low to moderate, with better scores for blended care. Costs for both interventions were low. Conclusions: Recruitment to the study was challenging and the interventions were less efficacious than anticipated, which led to lessons learned for future trials. Suggestions for future research are as follows: improved accessibility of the support program, increased frequency of support, and use of activity trackers.
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Purpose – Against the background of current leadership theory, this research paper analyses and compares the leadership approaches of two outstanding leaders: Daniel Vasella, chairman of the leading Swiss pharmaceutical organization Novartis and Ricardo Semler, owner of the Brazilian conglomerate Semco. In contrast to many rather abstract, unpractical and pointlessly theoretical papers on leadership this analysis provides a more applied view of leadership by means of the life history approach delivering insight into both leaders’ development and leader personality. Methodology/approach – First, this paper locates the ideas and practices associated with the term “leadership” as a concept through theories that have developed over time and shows how the practices of leading can be derived and understood through chosen theories. Based on this, the specific characteristics and career paths of both leaders are presented and compared so that a final analysis of their leadership approach can be done. The paper is based on secondary sources such as peer-reviewed business journals and literature on leadership. Information about both leaders and their approach to leadership is gathered mainly from published interviews with them. Additional information on Semler is taken from his autobiography. Conclusions – It is difficult to identify an “essence” of leadership, whether that takes the form of personality characteristics or traits, charisma, the ability to transform people or organizations or a brain function. All presented theories of leadership seem to have their raison d’être. Both Vasella and Semler apply a combination of different attitudes and behaviours that characterize their leadership style containing elements of transformational, charismatic, ethical, servant and authentic leadership.
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Despite the increased use of activity trackers, little is known about how they can be used in healthcare settings. This study aimed to support healthcare professionals and patients with embedding an activity tracker in the daily clinical practice of a specialized mental healthcare center and gaining knowledge about the implementation process. An action research design was used to let healthcare professionals and patients learn about how and when they can use an activity tracker. Data collection was performed in the specialized center with audio recordings of conversations during therapy, reflection sessions with the therapists, and semi-structured interviews with the patients. Analyses were performed by directed content analyses. Twenty-eight conversations during therapy, four reflection sessions, and eleven interviews were recorded. Both healthcare professionals and patients were positive about the use of activity trackers and experienced it as an added value. Therapists formulated exclusion criteria for patients, a flowchart on when to use the activity tracker, defined goals, and guidance on how to discuss (the data of) the activity tracker. The action research approach was helpful to allow therapists to learn and reflect with each other and embed the activity trackers into their clinical practice at a specialized mental healthcare center.
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Across all health care settings, certain patients are perceived as ‘difficult’ by clinicians. This paper’s aim is to understand how certain patients come to be perceived and labelled as ‘difficult’ patients in community mental health care, through mixed-methods research in The Netherlands between June 2006 and October 2009. A literature review, a Delphi-study among experts, a survey study among professionals, a Grounded Theory interview study among ‘difficult’ patients, and three case studies of ‘difficult’ patients were undertaken. Analysis of the results of these qualitative and quantitative studies took place within the concept of the sick role, and resulted in the construction of a tentative explanatory model. The ‘difficult’ patient-label is associated with professional pessimism, passive treatment and possible discharge or referral out of care. The label is given by professionals when certain patient characteristics are present and a specific causal attribution (psychological, social or moral versus neurobiological) about the patient’s behaviours is made. The status of ‘difficult’ patient is easily reinforced by subsequent patient and professional behaviour, turning initial unusual help-seeking behaviour into ‘difficult’ or ineffective chronic illness behaviour, and ineffective professional behaviour. These findings illustrate that the course of mental illness, or at least the course of patients’ contact with mental health professionals and services, is determined by patient and professional and reinforced by the social and mental health care system. This model adds to the broader sick role concept a micro-perspective in which attribution and learning principles are incorporated. On a practical level, it implies that professionals need to look into their own role in the perpetuation of difficult behaviours as described here.
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