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Background: The role of patient participation and representation during crises, such as the COVID‐19 pandemic, has been under‐researched. Existing studies paint a pessimistic picture of patient representation during the pandemic. However, there are indications that patient representatives have adapted to the new situation and can contribute to the resilience of healthcare systems. This paper aims to further explore the potential contribution of patient representatives for healthcare system resilience during the COVID‐19 pandemic. Methods: The study used a qualitative approach. We conducted a thematic analysis on the following data: interviews with client council members (n = 32) and representatives from patient organizations (n = 6) and focus groups (n = 2) to investigate patient representation on both the national policy level and organizational level in the Netherlands. Results: We identified the crisis discourse, the dependent position, the diversity of patient perspectives and the layered decision‐making structure as themes that help to understand what made patient representation in pandemic times a struggle for national and local patient representatives. The analysis of the subjects these representatives put forward during decision‐making shows that their input can play an important role in broadening discussions, challenging decisions, and suggesting alternatives during a crisis. We identified several strategies (e.g., collaborating with other actors, proactively putting subjects on the policy agenda, finding new ways of contacting their 'constituency') used by the patient representatives studied to exert influence despite the difficulties encountered. Conclusions: The struggle for patient representation during pandemic decision‐making is a missed opportunity for resilient healthcare systems as these representatives can play a role in opening up discussions and putting different perspectives to the fore. Moreover, the adaptive strategies used by representatives to influence decision‐making offer lessons for future representation activities. However, adaptations to the crisis decision‐making structure are also needed to enable patient representatives to play their role. Patient Contribution: We conducted interviews with patient representatives and discussed our preliminary findings with patient representatives during the focus groups. Zorgbelang, a patient organization supporting client councils and enabling and organizing patient participation for organizations and municipalities, was partner in this research and contributed to the interview guide, conducting interviews and focus groups. Additionally, the analysis made by the first author was discussed and refined multiple times with the partners of Zorgbelang and one of them co‐authored this paper. [ABSTRACT FROM AUTHOR]

The Wound‐QoL assesses the impact of chronic wounds on patients' health‐related quality of life (HRQoL). A 17‐item and a shortened 14‐item version are available. The Wound‐QoL‐17 has been validated for multiple languages. For the Wound‐QoL‐14, psychometric properties beyond internal consistency were lacking. We aimed to validate both Wound‐QoL versions for international samples representing a broad range of European countries, including countries for which validation data had yet been pending. Patients with chronic wounds of any aetiology or location were recruited in Austria, Lithuania, the Netherlands, Poland, Slovakia, Spain, Switzerland and Ukraine. Psychometric properties were determined for both Wound‐QoL versions for the overall sample and, if feasible, country‐wise. We included 305 patients (age 68.5 years; 52.8% males). Internal consistency was high in both Wound‐QoL‐17 (Cronbach's α: 0.820–0.933) and Wound‐QoL‐14 (0.779–0.925). Test–retest reliability was moderate to good (intraclass correlation coefficient: 0.618–0.808). For Wound‐QoL‐17 and Wound‐QoL‐14, convergent validity analyses showed highest correlations with global HRQoL rating (r = 0.765; r = 0.751) and DLQI total score (r = 0.684; r = 0.681). Regarding clinical data, correlations were largest with odour (r = −0.371; r = −0.388) and wound size (r = 0.381; r = 0.383). Country‐wise results were similar. Both Wound‐QoL versions are valid to assess HRQoL of patients with chronic wounds. Due to its psychometric properties and brevity, the Wound‐QoL‐14 might be preferrable in clinical practice where time is rare. The availability of various language versions allows for the use of this questionnaire in international studies and in clinical practice when foreign language patients are being treated. [ABSTRACT FROM AUTHOR]

Resistance exercise training is effective to counteract the adverse effects of androgen deprivation therapy (ADT) on body composition, muscle mass and leg strength in prostate cancer patients (PCa). However, it is unknown whether these effects can be autonomously maintained after cessation of the supervised program. Sixty‐eight PCa patients on ADT were included. The exercise intervention group (EX, n = 37) performed 20 weeks of supervised resistance exercise training. Thereafter, patients were advised to autonomously continue exercise training. The control group (CON, n = 31) only received usual care. Outcome measures were compared between baseline and after 1 year. Changes during the intervention (baseline vs. 20 weeks) and follow‐up period (20 weeks vs. 1 year) were descriptively explored. In EX, 83% reported to have continued exercise training themselves. After 1 year, fat mass gains were attenuated in EX compared to CON (1.2 ± 2.6 and 2.8 ± 1.9 kg, respectively; time × treatment effect p = 0.032). The fat percentage increased, and lean mass and quadriceps muscle cross‐sectional area decreased over time, with no differences between groups (overall 1.6 ± 2.1%, −0.7 ± 2.3 kg and −2.2 ± 2.9 cm2, respectively; time effects, all p < 0.05). For muscle strength, an increase of ∼5% in EX was observed, significantly different from the ∼10% decrease in CON (p < 0.001). Subsequent analyses showed that the initial exercise training‐obtained gains in lean mass, muscle mass and strength in EX compared to CON, declined during the follow‐up period. In conclusion, PCa patients on ADT are not capable to autonomously maintain the exercise‐obtained gains of a 20‐week supervised training program over a subsequent 1‐year period. Highlights: ADT for prostate cancer results in many side effects, including muscle mass lossA supervised resistance exercise training program can counteract many side effectsAfter cessation of the supervised program, exercise benefits are not effectively preservedMore focus on sustainability of exercise programs during ADT is required [ABSTRACT FROM AUTHOR]

Introduction: In 24/7 disability care facilities, patient‐reported experience measures (PREMs) are important to help healthcare professionals understand what matters to care users and to improve the quality of care. However, the successful implementation of a PREM is complex. In a Dutch disability care organization, stakeholders cocreated tailored implementation strategies aimed at improving the use and integration of a qualitative PREM. This study gives insights into the uptake and experiences with these cocreated implementation strategies and the perceived impact of the set of strategies. Methods: We performed a prospective process evaluation between February 2020 and February 2021. We collected data in three disability care facilities from 35 care users, 11 professionals, 3 facility managers and 4 organization representatives. Data collection included observations during kick‐offs and learning goal meetings and several attendance checklists. We collected 133 questionnaires (Time 0 and Time 1). We conducted 35 individual semistructured interviews and an online focus group interview. Quantitative data were analysed using descriptive statistics and qualitative data using directed content analysis. Results: The exposure to and adoption of strategies was between 76% and 100%. Participants were positive about tailoring the strategies to each facility. Implementation was hindered by challenges in care users' communication and COVID‐19. The perceived impact referred to an improved understanding of the goal and added value of the PREM and better preparation and execution of the PREM. The impact of the set of strategies was mainly experienced on the micro level. Conclusion: The uptake of the cocreated implementation strategies was acceptable. The participants valued the tailored approach, which enabled them to focus on facility‐specific learning goals. Stakeholder engagement and co‐created strategies may have strengthened the adoption of and experiences with the implementation. Patient or Public Contribution: In this article, we present the process evaluation of implementation strategies for the integrated use of a PREM in disability care. A development group consisting of communication vulnerable care users, trainers and professionals developed the implementation strategies. The disability care organization was responsible for the planning and organization of the implementation process. During the process evaluation the end users, trainers, professionals and managers tailored the implementation strategies to their own settings and needs. Researchers observed this implementation process and interviewed the stakeholders about their experiences and the perceived impact. [ABSTRACT FROM AUTHOR]

Policy PointsRealist evaluation (RE) is an emerging and promising research approach for evaluating integrated care, addressing what works, how, for whom, and in what circumstances.The rich philosophical foundation of RE, critical realism, can help to systematically unravel an integrated care program's initial theory prior to implementation, as a first step within RE.RE can be considered a robust methodological asset in integrated care research by facilitating a deeper level of insight into program functioning than traditional forms of evaluation do and by shaping a realist‐informed monitoring and evaluation process. Context: The complexity of integrated care and the need for transferable evaluation insights ask for a suitable evaluation paradigm. Realist evaluation (RE), underpinned by the philosophy of critical realism, is a theory‐driven approach that addresses what works, how, for whom, and in what circumstances. The current study illustrates the process needed for RE's first step: eliciting the initial program theory (IPT). The TARGET program, a Dutch primary care initiative to facilitate more integrated care for chronically ill patients, i.e., care that is efficient, tailored, and holistic, was taken as a real‐world case. Methods: An RE approach informed the phased IPT elicitation: (1) identifying an abstract theory framework; (2) formulating the preliminary IPT, building on the abstract theory and informed by previous scientific studies that underpin TARGET; and (3) refining the preliminary IPT, informed by RE expert interviews (n = 7). An RE heuristic tool, specifying the interplay between intervention‐context‐actors‐mechanisms‐outcomes (ICAMO) and retroductive reasoning, was applied to synthesize the underlying theory of individual TARGET components into TARGET's IPT. Findings: Separate but related IPTs were identified for the two main types of actors involved in TARGET: primary care professionals (PCPs) and patients. For both actors, two sorts of mechanisms are assumed to be activated by TARGET, which—via instrumental outcomes—contribute to long‐term quadruple aim targets. The first is confidence to enhance PCPs' person‐centered conversational skills and to increase patients' active engagement in TARGET. The second is mutual trust, between PCPs and patients and between PCPs and their network partners. A supportive context is assumed crucial for activating these mechanisms—for example, sufficient resources to invest in integrated care. Conclusions: Although the IPT elicitation process is time intensive and requires a mind shift, it facilitates a deeper insight into program functioning than accommodated by the prevailing experimental designs in integrated care. Furthermore, the design of a realist‐informed evaluation process can be informed by the IPT. [ABSTRACT FROM AUTHOR]

This randomized controlled trial evaluated the effect of a 5‐week daily skin‐to‐skin contact (SSC) intervention between mothers and their full‐term infants, compared with care‐as‐usual, on exclusive and continued breastfeeding duration during the first post‐natal year. Healthy pregnant women (n = 116) from a community sample were enrolled and randomly allocated to the SSC or care‐as‐usual condition. SSC mothers were requested to provide one daily hour of SSC for the first five post‐natal weeks. Twelve months post‐partum, mothers indicated the number of exclusive and continued breastfeeding months. Multiple regression analyses were conducted using intention‐to‐treat, per‐protocol and exploratory dose–response frameworks. In intention‐to‐treat analyses, exclusive and continued breastfeeding duration was not different between groups (exclusive: 3.61 ± 1.99 vs. 3.16 ± 1.77 months; adjusted mean difference 0.28, 95% confidence interval [CI] −0.33 to 0.89; p = 0.36; continued: 7.98 ± 4.20 vs. 6.75 ± 4.06 months; adjusted mean difference 0.81, 95% CI −0.46 to 2.08; p = 0.21). In per‐protocol analyses, exclusive and continued breastfeeding duration was longer for SSC than care‐as‐usual dyads (exclusive: 4.89 ± 1.26 vs. 3.25 ± 1.80 months; adjusted mean difference 1.28, 95% CI 0.31–2.24; p = 0.01; continued: 10.81 ± 1.97 vs. 6.98 ± 4.08 months; adjusted mean difference 2.33, 95% CI 0.13–4.54; p = 0.04). Exploratory dose–response effects indicated that more SSC hours predicted longer exclusive and continued breastfeeding duration. This study demonstrates that for the total group, the 5‐week daily SSC intervention did not extend exclusive and continued breastfeeding duration. However, for mothers performing a regular daily hour of SSC, this simple and accessible intervention may extend exclusive and continued breastfeeding duration by months. Future studies are required to confirm these promising findings. Trial registration: Netherlands Trial Register (NTR5697). [ABSTRACT FROM AUTHOR]