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Simple Summary: This study examined the use of the Breast Cancer Surveillance Decision Aid (BCS-PtDA) in eight Dutch hospitals. This PtDA supports information provision (including information about personalized recurrence risks) and decision-making about post-treatment surveillance. Health care professionals (HCPs) acknowledged that the tool helped make patients aware of their options but felt it increased their workload without clear benefits. While the tool was effective in presenting choices to patients, deliberation about the options was scarce. The main challenges were related to the extra time required and HCPs' perception of the tool's value. Risk communication was deemed generally adequate. The study suggests that, while the PtDA offers benefits, better integration and communication strategies are needed to enhance shared decision-making processes. In conclusion, the implementation of the BCS-PtDA led to choices being offered to patients. However, there is room for improvement in information provision and the application of shared decision-making. Background: To improve Shared decision-making (SDM) regarding personalized post-treatment surveillance, the Breast Cancer Surveillance Decision Aid (BCS-PtDA), integrating personalized risk information, was developed and implemented in eight hospitals. The aim of this mixed-methods study was to (1) assess the implementation and participation rates, (2) identify facilitators and barriers for use by health care professionals (HCPs), (3) quantify the observed level of SDM, and (4) evaluate risk communication and SDM application in consultations. Methods: Implementation and participation rates and patients' BCS-PtDA use were calculated using hospital registry data and BCS-PtDA log data. HCPs' perspective on facilitators and barriers were collected using the MIDI framework. Observed SDM levels in consultation transcripts were quantified using the OPTION-5 scale. Thematic analysis was performed to assess consultation content. Results: The average PtDA implementation and participation rates were, respectively, 26% and 61%. HCPs reported that the PtDA supported choice awareness. Reported barriers for implementation were mainly increased workload and a lack of perceived benefits. The consultation analysis (n = 64) showed patients were offered a choice, but deliberation was lacking. Risk communication was generally adequate. Discussion: When the BCS-PtDA was used, patients were clearly given a choice regarding their post-treatment surveillance, but information provision and SDM application can be improved. [ABSTRACT FROM AUTHOR]

Introduction: Value‐based healthcare (VBHC) focusses on increasing value for patients. Hospitals aim to implement VBHC via value improvement (VI) teams for medical conditions. To determine the patient's perspective on value, collective patient participation is important in these teams. We therefore evaluated the current state of patient participation in VI teams and share lessons learned. Methods: This mixed‐methods study was conducted at seven collaborating hospitals in the Netherlands. A questionnaire (the public and patient engagement evaluation tool) was tailored to the study's context, completed by VI team members (n = 147 from 76 different VI teams) and analysed with descriptive statistics. In addition, 30 semistructured interviews were held with VI team members and analysed through thematic analysis. Data were collected between February 2022 and January 2023 and were triangulated by mapping the quantitative results to the interview themes. Results: Thirty‐eight of the 76 included VI teams reported using a form of patient participation. Many respondents (71%) indicated a lack of a clear strategy and goal for patient participation. Multiple VI team members believed that specific knowledge and skills are required for patients to participate in a VI team, but this led to concerns regarding the representativeness of participating patients. Furthermore, while patients indicated that they experienced some level of hierarchy, they also stated that they did not feel restricted hereby. Lastly, patients were satisfied with their participation and felt like equal VI team members (100%), but they did mention a lack of feedback from the VI team on their input. Conclusion: The results imply the lack of full implementation of patient participation within VI teams. Guidelines should be developed that provide information on how to include a representative group of patients, which methods to use, how to evaluate the impact of patient participation, and how to give feedback to participating patients. Patient and Public Contribution: Two patient advisors were part of the research team and attended the research team meetings. They were involved as research partners in all phases of the study, including drafting the protocol (e.g., drafting interview guides and selecting the measurement instrument), interpreting the results and writing this article. [ABSTRACT FROM AUTHOR]

Objective: Follow‐up after breast cancer can be divided into surveillance and aftercare. It remains unclear how follow‐up can ideally be organised from the perspective of health care professionals (HCPs). The aim of this study was to gain insight in the organisation of follow‐up in seven Dutch teaching hospitals and to identify best practices and opportunities for improvement of breast cancer (all stages) follow‐up as proposed by HCPs. Methods: Semi‐structured in‐depth group interviews were performed, one in each of the participating hospitals, with in total 16 HCPs and 2 patient advocates. To describe the organisation of follow‐up, transcripts were analysed using a deductive approach. Best practices and opportunities were derived using an inductive approach. Results: Variation was found in the organisation of aftercare, especially in timing, frequency, and disciplines of involved HCPs. Less variation was observed for surveillance, which was guided by the national guideline. Best practices focused on case management and adequate collaboration between HCPs of different disciplines. Mentioned opportunities were improving the structured monitoring of patients' needs and a comprehensive guideline for organisation and content of aftercare. Conclusions: Variation in follow‐up existed between hospitals. Shared decision‐making (SDM) about surveillance is desirable to ensure that surveillance matches the patient needs, preferences, and personal risk for recurrences. [ABSTRACT FROM AUTHOR]

Background: Knowledge about the efficacy of behavioural intervention technologies that can be used by cancer survivors independently from a health-care provider is scarce. We aimed to assess the efficacy, reach, and usage of Oncokompas, a web-based eHealth application that supports survivors in self-management by monitoring health-related quality of life (HRQOL) and cancer-generic and tumour-specific symptoms and obtaining tailored feedback with a personalised overview of supportive care options.Methods: In this non-blinded, randomised, controlled trial, we recruited patients treated at 14 hospitals in the Netherlands for head and neck cancer, colorectal cancer, breast cancer, Hodgkin lymphoma, or non-Hodgkin lymphoma. Adult survivors (aged ≥18 years) were recruited through the Netherlands Cancer Registry (NCR) and invited by their treating physician through the Patient Reported Outcomes Following Initial Treatment and Long term Evaluation of Survivorship (PROFILES) registry. Participants were randomly assigned (1:1) by an independent researcher to the intervention group (access to Oncokompas) or control group (access to Oncokompas after 6 months), by use of block randomisation (block length of 68), stratified by tumour type. The primary outcome was patient activation (knowledge, skills, and confidence for self-management), assessed at baseline, post-intervention, and 3-month and 6-month follow-up. Linear mixed models (intention-to-treat) were used to assess group differences over time from baseline to 6-month follow-up. The trial is registered in the Netherlands Trial Register, NTR5774 and is completed.Findings: Between Oct 12, 2016, and May 24, 2018, 625 (21%) of 2953 survivors assessed for eligibility were recruited and randomly assigned to the intervention (320) or control group (305). Median follow-up was 6 months (IQR 6-6). Patient activation was not significantly different between intervention and control group over time (difference at 6-month follow-up 1·7 [95% CI -0·8-4·1], p=0·41).Interpretation: Oncokompas did not improve the amount of knowledge, skills, and confidence for self-management in cancer survivors. This study contributes to the evidence for the development of tailored strategies for development and implementation of behavioural intervention technologies among cancer survivors.Funding: Dutch Cancer Society (KWF Kankerbestrijding). [ABSTRACT FROM AUTHOR]

Implementation of patient's decision aids in routine clinical care is generally low. This study evaluated uptake and usage of a novel Dutch web-based prostate cancer treatment decision aid within the Prostate Cancer Patient Centered Care trial. From an estimated total patient sample of 1006 patients, 351 received a decision aid (35% implementation rate; hospital ranges 16%–84%). After receipt of the decision aid, most patients accessed the decision aid, utilized most functions, although not completely, and discussed the decision aid summary in a subsequent consultation with their care provider. Including nurses for dissemination of decision aids seemed to positively affect decision aid uptake. Once received, patients seemed able to use the decision aid and engage in shared decision-making as intended; however, decision aid uptake and complete usage of all decision aid components should be further improved. Prior to the diagnosis consultation, handing out of the decision aid should be prepared. [ABSTRACT FROM AUTHOR]

Purpose: A web-based self-management application "Oncokompas" was developed to monitor health-related quality of life and to support cancer survivors in finding and obtaining optimal supportive care. Access to this application is provided via a healthcare professional (HCP). The aim of this study was to explore the adoption and implementation of Oncokompas in routine clinical practice and to obtain insights in potentially relevant determinants of implementation.Methods: A pilot study was carried out among 65 hospitals throughout The Netherlands. HCPs filled out a questionnaire on the implementation of Oncokompas in their organization, consisting of study specific items and items based on the Measurement Instrument for Determinants of Innovations (MIDI). The MIDI comprises 29 determinants in four domains that predict the use of innovations: the innovation itself (Oncokompas), the user (HCP), the organization (hospital), and socio-political context.Results: In total, 20/65 eligible hospitals agreed to implement Oncokompas (adoption rate 31%). In these 20 adopting hospitals, the majority of the responding HCPs (72/205) in this study (44/61) indicated their patients were offered access to Oncokompas (implementation rate 72%). Comparing those HCPs who did and did not implement Oncokompas, the groups differed significantly on innovation-related (procedural clarity, complexity) and user-related determinants (importance of outcome expectations, professional obligation, social support, and self-efficacy).Conclusions: During this 1-year study, nationwide adoption rate of Oncokompas was at 31%, and subsequent implementation rate was at 72%. The results of this study contribute to further optimize interventions and strategies to adopt and implement (online) self-management applications in cancer care. [ABSTRACT FROM AUTHOR]

This study examined partners of cancer patients intention to use a web-based psychological intervention, their preferences regarding its preconditions, functionalities and topics, and factors related to their intention. One hundred and sixty-eight partners completed a questionnaire about these aspects. Forty-eight percent of the partners would (maybe) make use of a web-based intervention. Partners who intended to participate were significantly younger, used the Internet more often, and perceived more caregiver strain. Most partners preferred an intervention that takes less than 1 hour/week, lasts five weeks or more, and contains information and peer support. Half of the partners would like to receive online guidance. [ABSTRACT FROM PUBLISHER]

Background: Self-management by patients and informal caregivers confronted with advanced cancer is not self-evident. Therefore they might need self-management support from nurses. This article reports on nurses' perspectives on self-management support for people confronted with advanced cancer, and nurses' experiences with eHealth in this context. Methods: Six online focus groups were organized, with a total of 45 Dutch nurses with different educational levels and working in different care settings. Nurses were asked how they support patients and informal caregivers facing advanced cancer in managing physical and psychosocial problems in their daily life. Questions were also asked regarding the nurses' experiences with eHealth. Transcripts of the online focus group discussions were analyzed qualitatively following the principles of thematic analysis. The main themes derived from the analyses were ordered according to the elements in the 5 A's Behavior Change Model. Results: Within the scope of self-management support, nurses reported that they discuss the background, personal situation, wishes, and needs of advanced cancer patients ('Assess' in the 5 A's model), and they provide information about cancer and specifically the advanced type ('Advise'). However, nurses hardly give any advice on how patients can manage physical and psychological problems themselves and/or pay any attention to collaborative goal-setting ('Agree'). Neither do they explain how follow-up can be arranged ('Arrange'). In addition, they do not appear to pay much attention to self-management support for informal caregivers. Nurses' attitudes towards eHealth within the scope of self-management support are positive. They see many advantages, such as allowing advanced cancer patients to stay in charge of their own care and lives. However, nurses also explicitly stressed that eHealth can never be a substitute for personal contact between nurses and patients. Conclusions: Nurses value self-management support and eHealth for advanced cancer patients and their informal caregivers. However, they seem to disregard important elements in the support of self-management, such as providing practical advice, collaborative goal-setting, and arrangement of follow-up. We recommend further promoting and clarifying the essence and importance of self-management support, including self-management support for informal caregivers. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this study is to assess the psychometric properties of the Dutch version of the 34-item Short-Form Supportive Care Needs Survey (SCNS-SF34) and the newly developed module for head and neck cancer (HNC) patients (SCNS-HNC).Methods: HNC patients were included from two cross-sectional studies. Content validity of the SCNS-HNC was analysed by examining redundancy and completeness of items. Factor structure was assessed using confirmatory and exploratory factor analyses. Cronbach's alpha, Spearman's correlation, Mann-Whitney U test, Kruskall-Wallis and intraclass correlation coefficients (ICC) were used to assess internal consistency, construct validity and test-retest reliability.Results: Content validity of the SCNS-HNC was good, although some HNC topics were missing. For the SCNS-SF34, a four-factor structure was found, namely physical and daily living, psychological, sexuality and health system and information and patient support (alpha = .79 to .95). For the SCNS-HNC, a two-factor structure was found, namely HNC-specific functioning and lifestyle (alpha = .89 and .60). Respectively, 96 and 89 % of the hypothesised correlations between the SCNS-SF34 or SCNS-HNC and other patient-reported outcome measures were found; 57 and 67 % also showed the hypothesised magnitude of correlation. The SCNS-SF34 domains discriminated between treatment procedure (physical and daily living p = .02 and psychological p = .01) and time since treatment (health system, information and patient support p = .02). Test-retest reliability of SCNS-SF34 domains and HNC-specific functioning domain was above .70 (ICC = .74 to .83), and ICC = .67 for the lifestyle domain. Floor effects ranged from 21.1 to 70.9 %.Conclusions: The SCNS-SF34 and SCNS-HNC are valid and reliable instruments to evaluate the need for supportive care among (Dutch) HNC patients. [ABSTRACT FROM AUTHOR]

Background Meaning-focused coping may be at the core of adequate adjustment to life after cancer. Cancer survivors who experience their life as meaningful are better adjusted, have better quality of life and psychological functioning. Meaning-Centered Group Psychotherapy for Cancer Survivors (MCGP-CS) was designed to help patients to sustain or enhance a sense of meaning and purpose in their lives. The aim of the proposed study is to evaluate the effectiveness and cost-effectiveness of MCGP-CS. Methods/design Survivors diagnosed with cancer in the last 5 years and treated with curative intent, are recruited via several hospitals in the Netherlands. After screening, 168 survivors are randomly assigned to one of the three study arms: 1. Meaning-Centered Group Psychotherapy (MCGP-CS) 2. Supportive group psychotherapy (SGP) 3. Care as usual (CAU). Baseline assessment takes place before randomisation, with follow up assessments post-intervention and at 3, 6 and 12 months follow-up. Primary outcome is meaning making (PMP, PTGI, SPWB). Secondary outcome measures address quality of life (EORTC-30), anxiety and depression (HADS), hopelessness (BHS), optimism (LOT-R), adjustment to cancer (MAC), and costs (TIC-P, EQ-5D, PRODISQ). Discussion Meaning-focused coping is key to adjustment to life after cancer, however, there is a lack of evidence based psychological interventions in this area. Many cancer survivors experience feelings of loneliness and alienation, and have a need for peer support, therefore a group method in particular, can be beneficial for sustaining or enhancing a sense of meaning. If this MCGP-CS is effective for cancer survivors, it can be implemented in the practice of psycho- oncology care. Trial registration NTR3571 [ABSTRACT FROM AUTHOR]

Uptake of decision aids (DAs) in daily routine is low, resulting in limited knowledge about successful DA implementation at a large scale. We assessed implementation rates after multi-regional implementation of three different prostate cancer (PCa) treatment DAs and patient-perceived barriers and facilitators to use a DA. Thirty-three hospitals implemented one out of the three DAs in routine care. Implementation rates for each DA were calculated per hospital. After deciding about PCa treatment, patients (n = 1033) completed a survey on pre-formulated barriers and facilitators to use a DA. Overall DA implementation was 40%. For each DA alike, implementation within hospitals varied from incidental (< 10% of eligible patients receiving a DA) to high rates of implementation (> 80%). All three DAs were evaluated positively by patients, although concise and paper DAs yielded higher satisfaction scores compared with an elaborate online DA. Patients were most satisfied when they received the DA within a week after diagnosis. Pre-formulated barriers to DA usage were experienced by less than 10% of the patients, and most patients confirmed the facilitators. Many patients received a DA during treatment counseling, although a wide variation in uptake across hospitals was observed for each DA. Most patients were satisfied with the DA they received. Sustained implementation of DAs in clinical routine requires further encouragement and attention.

Background: The eHealth Impact Questionnaire (eHIQ) provides a standardized method to measure attitudes of electronic health (eHealth) users toward eHealth. It has previously been validated in a population of eHealth users in the United Kingdom and consists of 2 parts and 5 subscales. Part 1 measures attitudes toward eHealth in general and consists of the subscales attitudes towards online health information (5 items) and attitudes towards sharing health experiences online (6 items). Part 2 measures the attitude toward a particular eHealth application and consists of the subscales confidence and identification (9 items), information and presentation (8 items), and understand and motivation (9 items)., Objective: This study aimed to translate and validate the eHIQ in a Dutch population of eHealth users., Methods: The eHIQ was translated and validated in accordance with the COnsensus-based Standards for the selection of health status Measurement INstruments criteria. The validation comprised 3 study samples, with a total of 1287 participants. Structural validity was assessed using confirmatory factor analyses and exploratory factor analyses (EFAs; all 3 samples). Internal consistency was assessed using hierarchical omega (all 3 samples). Test-retest reliability was assessed after 2 weeks, using 2-way intraclass correlation coefficients (sample 1). Measurement error was assessed by calculating the smallest detectable change (sample 1). Convergent and divergent validity were assessed using correlations with the remaining measures (all 3 samples). A graded response model was fit, and item information curves were plotted to describe the information provided by items across item trait levels (all 3 samples)., Results: The original factor structure showed a bad fit in all 3 study samples. EFAs showed a good fit for a modified factor structure in the first study sample. This factor structure was subsequently tested in samples 2 and 3 and showed acceptable to good fits. Internal consistency, test-retest reliability, convergent validity, and divergent validity were acceptable to good for both the original as the modified factor structure, except for test-retest reliability of one of the original subscales and the 2 derivative subscales in the modified factor structure. The graded response model showed that some items underperformed in both the original and modified factor structure., Conclusions: The Dutch version of the eHIQ (eHIQ-NL) shows a different factor structure compared with the original English version. Part 1 of the eHIQ-NL consists of 3 subscales: attitudes towards online health information (5 items), comfort with sharing health experiences online (3 items), and usefulness of sharing health experiences online (3 items). Part 2 of the eHIQ-NL consists of 3 subscales: motivation and confidence to act (10 items), information and presentation (13 items), and identification (3 items)., (©Koen Ilja Neijenhuijs, Anja van der Hout, Evalien Veldhuijzen, Gwendolijne G M Scholten-Peeters, Cornelia F van Uden-Kraan, Pim Cuijpers, Irma M Verdonck-de Leeuw. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 26.08.2019.)

Background: Cancer survivors have to deal with symptoms related to cancer and its treatment. In Oncokompas, cancer survivors monitor their quality of life by completing patient reported outcome measures (PROMs), followed by personalized feedback, self-care advice, and supportive care options to stimulate patient activation. The aim of this study was to investigate feasibility and pretest-posttest differences of Oncokompas including a newly developed breast cancer (BC) module among BC survivors., Material and Methods: A pretest-posttest design was used. Feasibility was investigated by means of adoption, usage, and satisfaction rates. Several socio-demographic and clinical factors, and health-related quality of life (HRQOL) were explored that might be associated with patient satisfaction. Barriers and facilitators of Oncokompas feasibility were investigated by evaluating nurse consultation reports. Differences in patient activation (Patient Activation Measure) and patient-physician interaction (Perceived Efficacy in Patient-Physician Interactions) before and after Oncokompas use were investigated., Results: In total, 101 BC survivors participated. Oncokompas had an adoption rate of 75%, a usage rate of 75-84%, a mean satisfaction score of 6.9 (range 0-10) and a Net Promoter Score (NPS) of -36 (range -100-100) (N = 68). The BC module had a mean satisfaction score of 7.6. BC survivors who received surgery including chemotherapy and/or radiotherapy were significantly more satisfied with Oncokompas than BC survivors with surgery alone (p = .013). Six facilitators and 10 barriers of Oncokompas feasibility were identified. After using Oncokompas, BC survivors scored significantly higher on patient activation (p = .007; r = .24), but not on patient-physician interaction (p = .75)., Conclusion: Oncokompas including a BC module is considered feasible, but needs further optimization to increase user satisfaction. This study shows the value of tailoring eHealth applications for cancer survivors to their specific tumor type. Oncokompas including the BC module seems to improve patient activation among BC survivors.

Background: Confrontation with a life-threatening disease like cancer can evoke existential distress, which can trigger a search for meaning in people after having survived this disease., Methods: In an effort to gain more insight in the meaning making process, we conducted four focus groups with 23 cancer survivors on this topic. Participants responded to questions about experienced meaning making, perceived changes in meaning making after cancer and the perceived need for help in this area., Results: Most frequently mentioned meaning making themes were relationships and experiences. We found that, in general, cancer survivors experienced enhanced meaning after cancer through relationships, experiences, resilience, goal-orientation and leaving a legacy. Some participants, however, also said to have (also) experienced a loss of meaning in their lives through experiences, social roles, relationships and uncertainties about the future., Conclusions: The results indicated that there is a group of cancer survivors that has succeeded in meaning making efforts, and experienced sometimes even more meaning in life than before diagnosis, while there is also a considerable group of survivors that struggled with meaning making and has an unmet need for help with that. The results of this study contribute to develop a meaning centered intervention for cancer survivors.

Background: Although peer-to-peer contact might empower patients in various ways, studies show that only a few patients actually engage in support groups., Objective: The objective of our study was to explore factors that facilitate or impede engagement in face-to-face and online peer support, using the theory of planned behavior (TPB)., Methods: A questionnaire was completed by 679 patients being treated for arthritis, breast cancer, or fibromyalgia at two Dutch regional hospitals., Results: Our results showed that only a minority of the patients engaged in organized forms of peer support. In total 10% (65/679) of the respondents had engaged in face-to-face meetings for patients in the past year. Only 4% (30/679) of the respondents had contact with peers via the Internet in the past year. Patients were more positive about face-to-face peer support than about online peer support (P < .001). In accordance with the TPB, having a more positive attitude (P < .01) and feeling more supported by people in the social environment (P < .001) increased the intention to participate in both kinds of peer support. In addition, perceived behavioral control (P = .01) influenced the intention to participate in online peer support. Nevertheless, the intention to engage in face-to-face and online peer support was only modestly predicted by the TPB variables (R(2) = .33 for face-to-face contact and R(2) = .26 for online contact)., Conclusion: Although Health 2.0 Internet technology has significantly increased opportunities for having contact with fellow patients, only a minority seem to be interested in organized forms of peer contact (either online or face-to-face). Patients seem somewhat more positive about face-to-face contact than about online contact.

The objective of this study is to explore the experiences and attitudes of rheumatologists and oncologists with regard to their patients' health-related Internet use. In addition, we explored how often physicians referred their patients to health-related Internet sites. We sent a questionnaire to all the rheumatologists and oncologists in the Netherlands. The questionnaire included questions concerning demographics, experiences with patients' health-related Internet use, referral behavior, and attitudes to the consequences of patients' health-related Internet use (for patients themselves, the physician-patient relationship and the health care). The response rate was 46% (N=238). Of these respondents, 134 practiced as a rheumatologist and 104 as an oncologist. Almost all physicians encountered their patients raising information from the Internet during a consultation. They were not, however, confronted with their patients' health-related Internet use on a daily basis. Physicians had a moderately positive attitude towards the consequences of patients' health-related Internet use, the physician-patient relationship and the health care. Oncologists were significantly less positive than rheumatologists about the consequences of health-related Internet use. Most of the physicians had never (32%) or only sometimes (42%) referred a patient to a health-related Internet site. Most physicians (53%) found it difficult to stay up-to-date with reliable Internet sites for patients. Physicians are moderately positive about their patients' health-related Internet use but only seldom refer them to relevant sites. Offering an up-to-date site with accredited websites for patients might help physicians refer their patients.