Marfan syndrome (MFS) is a multisystemic, autosomal dominant connective tissue disorder that occurs de novo in 25%. In many families, parent and child(ren) are affected, which may increase distress in parents. To assess distress, 42 mothers (29% MFS) and 25 fathers (60% MFS) of 43 affected children, completed the validated screening‐questionnaire Distress thermometer for parents of a chronically ill child, including questions on overall distress (score 0–10; ≥4 denoting “clinical distress”) and everyday problems (score 0–36). Data were compared to 1,134 control‐group‐parents of healthy children. Mothers reported significantly less overall distress (2, 1–4 vs. 3, 1–6; p = .049; r = −.07) and total everyday problems (3, 0–6 vs. 4, 1–8; p = .03; r = −.08) compared to control‐group‐mothers. Mothers without MFS reported significantly less overall distress compared to mothers with MFS, both of a child with MFS (1, 0–4 vs. 3.5, 2–5; p = .039; r = −.17). No significant differences were found between the father‐groups, nor between the group of healthy parents of an affected child living together with an affected partner compared to control‐group‐parents. No differences in percentages of clinical distress were reported between mothers and control‐group‐mothers (33 vs. 42%); fathers and control‐group‐fathers (28 vs. 32%); nor between the other groups. Distress was not associated with the children's MFS characteristics. Concluding, parents of a child with MFS did not show more clinical distress compared to parents of healthy children. However, clinical distress was reported in approximately one‐third and may increase in case of acute medical complications. We advise monitoring distress in parents of a child with MFS to provide targeted support.
Background: Healthcare practitioner beliefs influence patients’ beliefs and health outcomes in musculoskeletal (MSK) pain. A validated questionnaire based on modern pain neuroscience assessing Knowledge and Attitudes ofPain (KNAP) was unavailable.Objectives: The aim of this study was to develop and test measurement properties of KNAP.Design: Phase 1; Development of KNAP reflecting modern pain neuroscience and expert opinion. Phase 2; a crosssectional and longitudinal study among Dutch physiotherapy students.Method: In the cross-sectional study (n = 424), internal consistency, structural validity, hypotheses testing, and Rasch analysis were examined. Longitudinal designs were applied to analyse test-retest reliability (n = 156), responsiveness, and interpretability (n = 76).Results: A 30-item KNAP was developed in 4 stages. Test-retest reliability: ICC (2,1) 0.80. Internal consistency: Cronbach’s α 0.80. Smallest Detectable Difference 90%: 4.99 (4.31; 5.75). Structural validity: exploratory factor analysis showed 2 factors. Hypotheses testing: associations with the Pain Attitudes and Beliefs Scale for Physiotherapists biopsychosocial subscale r = 0.60, with biomedical subscale r = 0.58, with the Neurophysiology of Pain Questionnaire r = 0.52. Responsiveness: 93% improved on KNAP after studying pain education. MinimalImportant Change: 4.84 (95%CI: 2.77; 6.91).Conclusions: The KNAP has adequate measurement properties. This new questionnaire could be useful to evaluate physiotherapy students’ knowledge and attitudes of modern pain neuroscience that could help to create awareness and evaluate physiotherapy education programs, and ultimately provide better pain management.
Background: In recent years, the effectiveness and cost-effectiveness of digital health services for people with musculoskeletal conditions have increasingly been studied and show potential. Despite the potential of digital health services, their use in primary care is lagging. A thorough implementation is needed, including the development of implementation strategies that potentially improve the use of digital health services in primary care. The first step in designing implementation strategies that fit the local context is to gain insight into determinants that influence implementation for patients and health care professionals. Until now, no systematic overview has existed of barriers and facilitators influencing the implementation of digital health services for people with musculoskeletal conditions in the primary health care setting. Objective: This systematic literature review aims to identify barriers and facilitators to the implementation of digital health services for people with musculoskeletal conditions in the primary health care setting. Methods: PubMed, Embase, and CINAHL were searched for eligible qualitative and mixed methods studies up to March 2024. Methodological quality of the qualitative component of the included studies was assessed with the Mixed Methods Appraisal Tool. A framework synthesis of barriers and facilitators to implementation was conducted using the Consolidated Framework for Implementation Research (CFIR). All identified CFIR constructs were given a reliability rating (high, medium, or low) to assess the consistency of reporting across each construct. Results: Overall, 35 studies were included in the qualitative synthesis. Methodological quality was high in 34 studies and medium in 1 study. Barriers (–) of and facilitators (+) to implementation were identified in all 5 CFIR domains: “digital health characteristics” (ie, commercial neutral [+], privacy and safety [–], specificity [+], and good usability [+]), “outer setting” (ie, acceptance by stakeholders [+], lack of health care guidelines [–], and external financial incentives [–]), “inner setting” (ie, change of treatment routines [+ and –], information incongruence (–), and support from colleagues [+]), “characteristics of the healthcare professionals” (ie, health care professionals’ acceptance [+ and –] and job satisfaction [+ and –]), and the “implementation process” (involvement [+] and justification and delegation [–]). All identified constructs and subconstructs of the CFIR had a high reliability rating. Some identified determinants that influence implementation may be facilitators in certain cases, whereas in others, they may be barriers. Conclusions: Barriers and facilitators were identified across all 5 CFIR domains, suggesting that the implementation process can be complex and requires implementation strategies across all CFIR domains. Stakeholders, including digital health intervention developers, health care professionals, health care organizations, health policy makers, health care funders, and researchers, can consider the identified barriers and facilitators to design tailored implementation strategies after prioritization has been carried out in their local context
