Search

Abstract Background The Minimal Clinically Important Difference (MCID) assesses what change on a measurement tool can be considered minimal clinically relevant. Although the recall period can influence questionnaire scores, it is unclear if it influences the MCID. This study is the first to examine longitudinally the impact of the recall period of an anchor question and its design on the MCID of COPD health status tools using the COPD Assessment Test (CAT), Clinical COPD Questionnaire (CCQ) and the St. George’s Respiratory Questionnaire (SGRQ). Methods Moderate to very severe COPD patients without respiratory co-morbidities were recruited during 3-week Pulmonary Rehabilitation (PR). CAT, CCQ and SGRQ were completed at baseline, discharge, 3, 6, 9 and 12 months. A 15-point Global Rating of Change scale (GRC) was completed at each follow-up. A five-point GRC was used as second anchor at 12 months. Mean change scores of a subset of patients indicating a minimal improvement on each of the anchor questions were considered the MCID. The MCID estimates over different time periods were compared with one another by evaluating the degree of overlap of Confidence Intervals (CI) adjusted for dependency. Results In total 451 patients were included (57.9 ± 6.6 years, 65% male, 50/39/11% GOLD II/III/IV), of which 309 completed follow-up. Baseline health status scores were 20.2 ± 7.3 (CAT), 2.9 ± 1.2 (CCQ) and 50.7 ± 17.3 (SGRQ). MCID estimates for improvement ranged − 3.1 to − 1.4 for CAT, − 0.6 to − 0.3 for CCQ, and − 10.3 to − 7.6 for SGRQ. Absolute higher – though not significant – MCIDs were observed for CAT and CCQ directly after PR. Significantly absolute lower MCID estimates were observed for CAT (difference − 1.4: CI -2.3 to − 0.5) and CCQ (difference − 0.2: CI -0.3 to −0.1) using a five-point GRC. Conclusions The recall period of a 15-point anchor question seemed to have limited impact on the MCID for improvement of CAT, CCQ and SGRQ during PR; although a 3-week MCID estimate directly after PR might lead to absolute higher values. However, the design of the anchor question was likely to influence the MCID of CAT and CCQ. Trial registration RIMTCORE trial #DRKS00004609 and #12107 (Ethik-Kommission der Bayerischen Landesärztekammer).

AimsThe objective of this study is to investigate whether type of depressive symptoms (i.e. cognitive-affective or somatic) is related to a patient-perceived need for professional psychological care in individuals with diabetes.MethodsIn total 2266 participants were recruited as part of the screening procedure for a multi-center randomized controlled trial on the treatment of depressive symptoms among individuals with diabetes. Individuals were invited to complete Beck Depression Inventory-II (BDI-II). Patients with elevated depressive symptoms (BDI-II ≥14) were interviewed about their psychological care need. Based on their care needs patients were categorized into: unmet need, no need, met need and unclear need. These groups were compared on type of depressive symptoms, as categorized into cognitive-affective symptoms and somatic symptoms.Results568 eligible individuals had elevated depressive symptoms, of whom 519 were reached. Among these depressed individuals, 19.7% (102 of 519) had an unmet need for psychological care. Participants with an unmet need were younger (pConclusionsCognitive-affective symptoms of depression-but not somatic symptoms-were associated with an unmet need for psychological care among depressed individuals with diabetes. Future research is needed to reveal better predictors explaining the discrepancy between distress and low care needs in order to optimize screening procedures.

Background: We aimed to assess the role of the COVID-19 pandemic in the association of clinical, physical, and psychological factors with pain in Rheumatoid Arthritis (RA) patients., Methods: We included 103 RA patients (81.6% females; mean age 56.1 ± 13.8 years). Patients filled out the VAS-pain, GAD-7, PHQ-9, MFI-20, and B-IPQ. Paired sample t-tests, correlations, and multiple regression analyses were used to analyse the data., Results: Our results showed significantly worsened pain in the data collected post-pandemic (p ≤ 0.05). Pre-pandemic, the final regression models showed an association between functional disability (β = 0.24; p ≤ 0.05), illness perception (β = 0.34; p ≤ 0.05) and pain. In post-pandemic models, significant associations were found between fatigue (β = 0.33; p ≤ 0.01) and illness perception (β = 0.36; p ≤ 0.01) with pain. Positive illness perception was able to alleviate the associations between fatigue and depression with pain before and after the pandemic., Conclusion: Findings indicate that patients with RA may have been negatively affected by the COVID-19 pandemic given their vulnerability. Even though pharmacological treatment was not interrupted, post-pandemic results showed significantly higher levels of experienced pain. Therefore, in addition to biological therapy, non-pharmacological interventions, including psychological support aimed at diminishing negative illness perception, may be beneficial in reducing RA-related pain, especially when dealing with a crisis., (© 2024 John Wiley & Sons Ltd.)

This weekly diary study investigated associations of weekly dyadic coping strategies with caregivers' willingness to care and burden. Multilevel modelling was applied to assess between- and within-person associations for 24 consecutive weeks in 955 caregivers. Greater willingness to care was reported in weeks when caregivers used more collaborative ( b = 0.26, p < 0.001) and supportive ( b = 0.30, p < 0.001) strategies, whereas uninvolved coping was associated with lower willingness to care ( b = -0.44, p < 0.001). Using collaborative coping strategies was associated with lower weekly burden ( b = -0.13, p < 0.001). A greater burden was reported in weeks when caregivers used more uninvolved ( b = 0.19, p < 0.001) and controlling ( b = 0.13, p < 0.001) coping strategies. A full understanding of whether caregivers' willingness to care and burden may be improved owing to weekly dyadic coping is essential for developing timely support for caregivers., Competing Interests: Declaration of conflicting interestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Purpose: Despite efficient biological disease-modifying antirheumatic drugs (bDMARDs) Rheumatoid Arthritis (RA) patients still suffer from high fatigue. This study aims to further our knowledge by assessing severity levels of the various fatigue dimensions and their associations with pain, sleep quality, and psychological well-being in bDMARDs treated RA patients., Material and Methods: The sample consisted of 146 RA patients (84.9% females; mean age 56.6 ± 13.6 years), who completed the MFI-20, SF-36, PSQI, GAD-7 and PHQ-9. Correlation analyses and multiple linear regressions were used to analyse the data., Results: General fatigue was the highest reported type of fatigue, followed by physical fatigue dimensions. In the final regression model, pain and disability were significantly associated with physical fatigue ( p  ≤ 0.001, p  ≤ 0.05, respectively) and reduced activity ( p  ≤ 0.01, p  ≤ 0.05, respectively). Anxiety was significantly associated with mental fatigue ( p  ≤ 0.05) and reduced motivation ( p  ≤ 0.01). Regression analyses showed no significant associations between depression, sleep quality, and fatigue in any of the final models., Conclusions: Our findings indicate that effectively addressing fatigue in RA patients requires an individualized approach. This approach should acknowledge the varying degrees of fatigue across different fatigue dimensions (physical or mental), while also taking into account the patient's mental health problems, pain levels, and disability levels.

Background: Although eMental health interventions are a viable solution to address disparities in access to mental healthcare and increase its efficiency, they still face challenges of implementation. Literature highlights numerous barriers such as diffusion of responsibility and unclear expectations of what implementation entails might hinder this process. While research mostly focuses on analyzing these barriers, there is an urgent need to increase uptake in practice. In turn, commercial companies focus mostly on increasing uptake, while overlooking research outputs. To bridge the gap between research and practice, attention to how implementation occurs in practice is required. This study investigates "Make it Happen" (MiH), the implementation model developed by the eMental Health company Minddistrict, aiming to gain more insight into operationalizing implementation frameworks by 1) describing MiH and its conceptual underpinnings, and 2) gaining lessons learned from the development of MiH. Ultimately, this work aims at improving existing scientific frameworks by extending them with knowledge from practice., Methods: First, individual interviews and focus groups with Minddistrict implementation managers were performed. Second, individual interviews with project leads in mental healthcare organizations that were involved in the implementation of Minddistrict were conducted. Within Minddistrict, 7 implementation managers and account managers were involved, in addition to 11 project leads from mental healthcare organizations. Data were elaborated with thematic analysis., Results: A comprehensive description of MiH and its 5 main phases was achieved. During the 1) Onboarding phase, implementing organizations are guided by Minddistrict to build a team responsible for implementation, which then 2) designs patient and client journeys, 3) builds, tailors and configures their offer, 4) trains key-users and, 5) evaluates the success of implementation. All participants had extensive and aligned definitions and articulated expectations on implementation. Points of improvement for the model such as role ambiguity and excessive workload were identified. As strengths, internal motivation and good relationships with the provider were valued., Conclusion: The present study highlights the importance of clear role division and stakeholder engagement in implementation processes, and suggest that a strong collaboration between companies and academia could optimize implementation efforts and ensure a better fit between humans, context, and technologies., (© 2024. The Author(s).)

Purpose: Chronic pain and obesity often co-occur, negatively affecting one another and psychological wellbeing. Pain and psychological wellbeing improve after bariatric metabolic surgery (BMS), however, it is unknown whether psychological wellbeing improves differently after weight loss between patients with and without chronic pain. We investigated whether weight loss is associated with greater psychological wellbeing and functioning change after BMS, comparing patients with and without preoperative pain syndromes., Methods: Depression, health-related quality of life, self-esteem, self-efficacy to exercise and controlling eating behaviours, physical activity, and food cravings were measured before and 24 months after BMS among 276 patients with obesity. The presence of preoperative chronic pain syndromes was examined as a moderator for the relationship between 24-month weight loss and changes in psychological outcomes., Results: Chronic pain syndromes were present among 46% of patients. Weight loss was associated with greater improvement in health-related quality of life, self-efficacy to exercise and controlling eating behaviours, self-esteem and greater amelioration in food cravings. Pain syndromes only moderated negatively the relationship between the postoperative weight loss and change in self-efficacy to control eating behaviours (b = -0.49, CI [-0.88,-0.12])., Conclusion: Patients with and without chronic pain showed similar improvements in weight and psychological wellbeing and behaviours after BMS. The relationship between weight loss and the improvement of self-efficacy to control eating behaviours was weaker among patients with chronic pain syndrome. Further work, measuring pain severity over time, is needed to shed light on the mechanism underlying pain and postoperative change in psychological wellbeing and weight loss., (© 2024. The Author(s).)

Objective: Social participation is an important aspect associated with health-related outcomes in chronic diseases. However, little is known about the factors that may affect participation in patients with rheumatoid arthritis (RA). We aimed to examine whether pain, fatigue, anxiety, depression, and illness perception are associated with social participation in patients with RA when controlled for clinical and sociodemographic variables. We also analysed the mediating role of illness perception in the association between physical and psychological variables on social participation., Method: We included 157 RA patients (84.7% females; mean age 56.4 ± 13.9 years) who completed the Participation Scale, Brief Illness Perception Questionaire, Generalized Anxiety Disorder Scale, Patient Health Questionnaire, 36-item Short Form Health Survey, and the Visual Analogue Scale. Multiple linear regressions and mediation analyses were used to analyze the data., Results: In the final regression models, illness perception (β = .42; p ≤ .001) and functional disability (β = .21; p ≤ .05) were associated with social participation. Income (β = -.18; p ≤ .05) lost its significance when physical variables were added to the model, and pain (β = .24; p ≤ .05) and fatigue (β = -.24; p ≤ .05) when psychological distress was added. No significant role of anxiety, depression, disease activity, or age was identified using regression analyses. Illness perception mediated the association of pain, fatigue, anxiety, and depression with social participation, and the indirect effect varied from 65% to 98%., Conclusions: Illness perceptions may significantly diminish the impacts of pain, fatigue, anxiety, and depression on social participation in individual RA patients. Therefore, RA patients could benefit from psychological interventions aimed at tackling negative illness perceptions. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Informal care is a key pillar of long-term care provision across Europe and will likely play an even greater role in the future. Thus, research that enhances our understanding of caregiving experiences becomes increasingly relevant. The ENTWINE iCohort Study examines the personal, psychological, social, economic, and geographic factors that shape caregiving experiences. Here, we present the baseline cohort of the study and describe its design, recruitment methods, data collection procedures, measures, and early baseline findings. The study was conducted in nine countries: Germany, Greece, Ireland, Israel, Italy, the Netherlands, Poland, Sweden, and the United Kingdom. The study comprised a web-based longitudinal survey (baseline + 6-month follow-up) and optional weekly diary assessments conducted separately with caregivers and care recipients. From 14 August 2020 to 31 August 2021, 1872 caregivers and 402 care recipients were enrolled at baseline. Participants were recruited via Facebook and, to a lesser extent, via the study website or caregiver/patient organisations. Caregiver participants were predominantly female (87%) and primary caregivers (82%), with a median age of 55 years. A large proportion (80%) held at least post-secondary education, and two-thirds were married/partnered. Over half of the caregivers were employed (53%) and caring for a person with multiple chronic conditions (56%), and nearly three-quarters were caring for either a parent (42%) or a spouse/partner (32%). About three-quarters of care recipient participants were female (77%), not employed (74%), and had at least post-secondary education (77%), with a median age of 55 years. Over half of the care recipients were married/partnered (59%), receiving care primarily from their spouses/partners (61%), and diagnosed with multiple chronic conditions (57%). This study examining numerous potential influences on caregiving experiences provides an opportunity to better understand the multidimensional nature of these experiences. Such data could have implications for developing caregiving services and policies, and for future informal care research., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2024 Elayan et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Background: The well-being of informal caregivers of people living with chronic kidney disease is influenced by their experiences with support, however, few studies have focused on exploring these experiences. This study aimed to explore informal caregivers' experiences accessing and receiving support while caring for someone living with chronic kidney disease., Methods: Informal caregivers of people living with chronic kidney disease (n = 13) in the United Kingdom were primarily recruited via community organisations and social media adverts to participate in semi-structured interviews. Interviews explored support needs, experiences of receiving support from different groups (e.g. healthcare professionals, family/friends), and barriers and facilitators to accessing support. Support was understood as including emotional, practical, and informational support. Data were analysed using reflexive thematic analysis., Results: Three themes were generated: (1) "Systems seem to get in the way" - challenges within support systems, illustrating the challenges informal caregivers encountered when navigating complex support systems; (2) Relying on yourself, describing how informal caregivers leveraged their existing skills and networks to access support independently, while recognising the limitations of having to rely on yourself to find support; and (3) Support systems can "take the pressure off", showing how support systems were able to help informal caregivers cope with the challenges they experienced if certain conditions were met., Conclusions: In response to the challenges informal caregivers experienced when seeking support, improvements are needed to better consider informal caregiver needs within healthcare systems, and to develop interventions tailored to informal caregiver needs and context. Within the healthcare system, informal caregivers may benefit from system navigation support and better integration within healthcare teams to ensure their informational support needs are met. New interventions developed to support informal caregivers should fit within their existing support systems and incorporate the qualities of support, such as empathy, that were valued. Additionally, use of an equity framework and user-centered design approaches during intervention development could help ensure interventions are accessible and acceptable., (© 2023. The Author(s).)

Background: e-Mental health interventions can improve access to mental health support for caregivers of people living with chronic kidney disease (CKD). However, implementation challenges often prevent effective interventions from being put into practice. To develop an e-mental health intervention for caregivers of people living with CKD that is optimized for future implementation, it is important to engage professionals that may endorse or deliver the intervention (ie, potential implementers) during intervention development., Objective: This study aims to explore the perspectives of potential implementers working in kidney care, in mental health care, or at nonprofit organizations regarding the design and implementation of an e-mental health intervention for caregivers of people living with CKD., Methods: Potential implementers (N=18) were recruited via National Health Service Trusts, email, and social media advertisements to participate in semistructured video interviews. Interview questions were informed by the Consolidated Framework for Implementation Research (CFIR). Data were analyzed using a deductive analysis approach using the CFIR, with inductive coding applied to relevant data not captured by the framework., Results: A total of 29 generic categories, related to 17 CFIR constructs, were identified. The perceived fit between the intervention and implementation context (ie, existing service delivery models and work routines) and existing social networks among potential implementers were perceived as important factors in enhancing implementation potential. However, a need for capacity building among potential implementers to create systems to support the identification and referral of caregivers to an e-mental health intervention was identified. Equity concerns were raised regarding the intervention, highlighting the importance of incorporating an equity lens during intervention design to enhance accessibility and adoption., Conclusions: Potential implementers provided valuable insights into key design and implementation factors to help inform the development of an e-mental health intervention for caregivers of people living with CKD. Incorporating their feedback can help ensure the intervention is acceptable and inform the selection of future implementation strategies to enhance the implementation potential of the intervention. Potential implementers should continue to be engaged throughout intervention development., (©Chelsea Coumoundouros, Rabie Adel El Arab, Paul Farrand, Alexander Hamilton, Robbert Sanderman, Louise von Essen, Joanne Woodford. Originally published in JMIR Human Factors (https://humanfactors.jmir.org), 17.11.2023.)

Objective: Compas-Y is a compassionate mind training app that was co-designed to be fully adapted to mobile technology and to people with newly diagnosed cancer. This study aimed to evaluate the use, appreciation and impact of the app., Methods: Seventy-one people with cancer who created an app account were included (38% breast cancer, 72% diagnosed <4 months ago, 76% received chemotherapy). Participants had very high baseline scores of self-compassion. In a convergent mixed methods design, back-end log-data ( n  = 71), pre-post surveys ( n  = 34) and semi-structured interviews ( n  = 23) collected for >8 weeks and were concurrently analysed using joint displays., Results: About half of the participants (45%) used 4 of the 6 modules. Compas-Y was highly appreciated, with all content considered relevant and a source of support. Experienced benefits related to improved mental health. Particularly, we found significant changes in anxiety, but not in depression or well-being. In the interviews, people reported experiencing more rest and more positive emotions due to using the app. Process benefits included significant reductions in self-criticism (inadequate self and self-blame), but not self-compassion. In the interviews, people reported improved self-compassion and less self-criticism, more self-awareness, recognition and support, and improved emotion regulation and coping. The surveys did not capture the full range of outcomes that participants reported in the interviews., Conclusions: Compas-Y is a highly appreciated mobile intervention that supported users in aspects of their mental health. Findings are discussed in terms of reach and adherence, app functionalities, co-design and tailoring of cancer-related and compassion-based eHealth., Competing Interests: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s) 2023.)

Objective: Although the COVID-19 pandemic has affected mental health, understanding who has been affected most and why is incomplete. We sought to understand changes in mental health in the context of transmission numbers and pandemic (social) restrictions and whether changes in mental health varied among population groups., Methods: We analyzed data from 92 062 people (aged ≥16 years and able to read Dutch) who participated in the Corona Behavioral Unit cohort study at the National Institute for Public Health and the Environment, the Netherlands, from April 17, 2020, through January 25, 2022. Participants self-reported mental well-being through multiple rounds of surveys. We used a multivariable linear mixed-effects model to analyze loneliness, general mental health, and life satisfaction., Results: As strictness of pandemic prevention measures and social restrictions increased, people's feelings of loneliness increased and mental health and life satisfaction decreased. As restrictions were relaxed, loneliness decreased and general mental health improved. Younger people (aged 16-24 y) versus older people (aged ≥40 y), people with low (vs high) education levels, and people living alone (vs living together) were more likely to have negative well-being outcomes. We observed that trajectories over time differed considerably only by age, with participants aged 16-24 years affected substantially more than participants aged ≥40 years by pandemic social restrictions. These patterns were consistent across multiple waves of SARS-CoV-2 infection., Conclusions: Our findings suggest that the social restrictions imposed by the Dutch government during the study period were associated with reduced mental well-being, especially among younger people. However, people appeared resilient as they recovered during periods when restrictions were relaxed. Monitoring and supporting well-being, in particular to reduce loneliness, may help younger people during periods of intense social restrictions.

Background: Attachment avoidance and anxiety have been linked to overweight and poor health behaviours, yet the mechanisms that underpin the relationship between attachment and health behaviours are not fully understood. Self-esteem and self-efficacy have been found to differ between attachment styles, rendering these variables potential mediators of the relationship. This longitudinal study investigated the serial mediation between preoperative attachment and 2-year post-operative health behaviours through self-esteem and health self-efficacy., Methods: Participants were 263 bariatric surgery patients (75.7% females, aged 47.7 ± 10.4 years, BMI 38.9 ± 3.6 kg/m 2 ) assessed before the operation and again one and two years after the surgery. Patients completed the Experiences for Close Relationships Brief Scale, Rosenberg Self-esteem scale, Weight Efficacy Lifestyle Questionnaire, Bariatric Surgery Self-Management Questionnaire, Exercise Self-Efficacy Scale and the Exercise Behaviour Scale., Results: Higher preoperative attachment anxiety and avoidance were associated with lower self-esteem one year after bariatric surgery and poorer health self-efficacy two years after the surgery. Self-esteem and health self-efficacy mediated the relationships between preoperative anxious and avoidant attachment and 2- year post-operative diet adherence and physical activity., Conclusions: Helping patients to feel more worthy and reinforcing their beliefs about their own competences could lead to higher engagement with healthy lifestyle and adherence to treatment protocols, ultimately helping patients to achieve their goals for bariatric surgery., Clinical Trial Registration: BARIA: Netherlands Trial Register: NL5837 (NTR5992) https://www.trialregister.nl/trial/5837 . Diabaria: ClinicalTrials.gov identifier (NCT number): NCT03330756., (© 2023. BioMed Central Ltd., part of Springer Nature.)

Objective: Informal caregivers are expected to be willing to care for relatives with care needs. Little is known about whether and how willingness to care changes over time. Using a weekly diary study, we examined changes in the willingness of 955 caregivers from nine countries. Caregivers provided information on their caregiving context, relationship type, and relationship satisfaction with the care recipient., Methods and Measures: For 24 consecutive weeks, caregivers evaluated willingness to care as it was 'right now'., Results: Willingness differs from one caregiver to another (68% between-level variability) but also fluctuates in the same caregiver from week to week (32% within-level variability), with a decrease over 6 months (intercept = 8.55; slope = -0.93; p  < .001). Regardless of individual differences in average willingness to care based on caregiving context and relationship satisfaction, caregivers reported decreases in willingness. Caregivers who presented one or more health conditions themselves reported higher weekly fluctuations in willingness than caregivers with no health conditions., Conclusion: Willingness is not a stable attitude because it decreases and caregivers experience fluctuations from week to week. A clearer understanding of weekly processes is optimal for monitoring the caregivers' well-being and tailoring interventions in line with weekly individual variations.

The emergence of wearable sensor technology may provide opportunities for automated measurement of psychophysiological markers of mental and physical fitness, which can be used for personalized feedback. This study explores to what extent within-subject changes in resting heart rate variability (HRV) during sleep predict the perceived mental and physical fitness of military personnel on the subsequent morning. Participants wore a Garmin wrist-worn wearable and filled in a short morning questionnaire on their perceived mental and physical fitness during a period of up to 46 days. A custom-built smartphone app was used to directly retrieve heart rate and accelerometer data from the wearable, on which open-source algorithms for sleep detection and artefact filtering were applied. A sample of 571 complete observations in 63 participants were analyzed using linear mixed models. Resting HRV during sleep was a small predictor of perceived physical fitness (marginal R 2  = .031), but not of mental fitness. The items on perceived mental and physical fitness were strongly correlated (r = .77). Based on the current findings, resting HRV during sleep appears to be more related to the physical component of perceived fitness than its mental component. Recommendations for future studies include improvements in the measurement of sleep and resting HRV, as well as further investigation of the potential impact of resting HRV as a buffer on stress-related outcomes., (© 2023. The Author(s).)