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BACKGROUND: Providing informal care for a person with Parkinson's disease (PD) can be a demanding process affecting several dimensions of a caregiver's life and potentially causing caregiver burden. Despite the emerging literature on caregiver burden in people with PD, little is known about the inter-relationship between quantitative and qualitative findings. Filling this knowledge gap will provide a more holistic approach to develop and design innovations aiming at reducing or even preventing caregiver burden. This study aimed to characterize the determinants of caregiver burden among informal caregivers of persons with PD, in order to facilitate the development of tailored interventions that reduce caregiver burden.METHODS: We conducted a cross-sectional study in The Netherlands using a sequential mixed methods approach, entailing a quantitative study of 504 persons with PD and their informal caregivers as well as a qualitative study in a representative subsample of 17 informal caregivers. The quantitative study included a standardized questionnaire of caregiver burden (Zarit Burden Inventory) and patient-related (Beck Depression Inventory, State-Trait Anxiety Inventory, Acceptance of Illness Scale, MDS-Unified Parkinson's Disease Rating Scale part II on motor functions in daily life, Self-assessment Parkinson's Disease Disability Score), caregiver-related (Brief Coping Orientation to Problems Experience Inventory, Caregiver Activation Measurement, Multidimensional Scale of Perceived Social Support) and interpersonal determinants (sociodemographic variables including among others gender, age, education, marital status and working status). The qualitative study consisted of semi-structured interviews. Multivariable regression and thematic analysis were used to analyse quantitative and qualitative data, respectively.RESULTS: A total of 337 caregivers were women (66.9%), and the majority of people with PD were men (N = 321, 63.7%). The mean age of persons with PD was 69.9 (standard deviation [SD] 8.1) years, and the mean disease duration was 7.2 (SD 5.2) years. A total of 366 (72.6%) persons with PD had no active employment. The mean age of informal caregivers was 67.5 (SD 9.2) years. Most informal caregivers were female (66.9%), had no active employment (65.9%) and were the spouse of the person with PD (90.7%). The mean Zarit Burden Inventory score was 15.9 (SD 11.7). The quantitative study showed that a lack of active employment of the person affected by PD was associated with a higher caregiver burden. The qualitative study revealed cognitive decline and psychological or emotional deficits of the person with PD as additional patient-related determinants of higher caregiver burden. The following caregiver-related and interpersonal determinants were associated with higher caregiver burden: low social support (quantitative study), concerns about the future (qualitative study), the caregiving-induced requirement of restrictions in everyday life (qualitative study), changes in the relationship with the person with PD (qualitative study) and a problem-focused or avoidant coping style (both studies). Integration of both data strands revealed that qualitative findings expanded quantitative findings by (1) distinguishing between the impact of the relationship with the person with PD and the relationship with others on perceived social support, (2) revealing the impact of non-motor symptoms next to motor symptoms and (3) revealing the following additional factors impacting caregiver burden: concern about the future, perceived restrictions and limitations in performing daily activities due to the disease, and negative feelings and emotional well-being. Qualitative findings were discordant with the quantitative finding demonstrating that problem-focused was associated with a higher caregiver burden. Factor analyses showed three sub-dimensions of the Zarit Burden Inventory: (i) role intensity and resource strain, (2) social restriction and anger and (3) self-criticism. Quantitative analysis showed that avoidant coping was a determinant for all three subscales, whereas problem-solved coping and perceived social support were significant predictors on two subscales, role intensity and resource strain and self-criticism.CONCLUSIONS: The burden experienced by informal caregivers of persons with PD is determined by a complex interplay of patient-related, caregiver-related and interpersonal characteristics. Our study highlights the utility of a mixed-methods approach to unravel the multidimensional burden experienced by informal caregivers of persons with chronic disease. We also offer starting points for the development of a tailored supportive approach for caregivers.

Contains fulltext : 251339.pdf (Publisher’s version ) (Open Access) OBJECTIVE: To compare CollaboRATE and SDM-Q-9 questionnaires when appreciating patient-perceived level of shared decision-making (SDM) in doctor-patient consultations. METHODS: Data were harvested from five separate studies on SDM, conducted in three university and one large community hospital in the Netherlands, using Dutch versions of both questionnaires. CollaboRATE and SDM-Q-9 scores were expressed as percentages. Correlation was assessed using Spearman's Rho coefficient. Bland&Altman analysis was used to assess the degree of agreement. Top scores were calculated to assess possible ceiling effects. RESULTS: The five studies included 442 patients. Median CollaboRATE scores (88.9%, IQR 81.5-100%) were significantly higher (p

Additional file 2: SPIRIT checklist for interventional trials

Additional file 1: Supplementary Table 1. Orientating questionnaire for respiratory problems in PD [Van de Wetering et al., submitted]. Supplementary Table 2. Stop criteria. Supplementary Table 3. Feasibility questionnaire, scored on 10-point Likert scale. Supplementary Figure 1. Summary of outcome measurements

JPE_Supplemental_materials for Do collaboRATE Scores Reflect Differences in Perceived Shared Decision-Making Across Diverse Patient Populations? Evidence From a Large-Scale Patient Experience Survey in the United States by Rachel C Forcino, Marcus Thygeson, A James O’Malley, Marjan J Meinders, Gert P Westert and Glyn Elwyn in Journal of Patient Experience

Appendix_1_(1) for Measuring Patient-Reported Shared Decision-Making to Promote Performance Transparency and Value-Based Payment: Assessment of collaboRATE’s Group-Level Reliability by Rachel C Forcino, Marcus Thygeson, A James O’Malley, Marjan J Meinders, Gert P Westert and Glyn Elwyn in Journal of Patient Experience

BACKGROUND: Postoperative non-cardiac complication rates are as high as 11-28% after high-risk abdominal procedures. Emerging evidence indicates that postoperative cardiac troponin T elevations are associated with adverse outcome in non-cardiac surgery. The aim of this study was to determine the relationship between postoperative high-sensitive cardiac troponin T elevations and non-cardiac complications in patients after major abdominal surgery. METHODS: This prospective observational single-centre cohort study included patients at risk for coronary artery disease undergoing elective major abdominal surgery. Cardiac troponin was measured before surgery and at day 1, 3, and 7. Multivariable logistic regression analysis was performed to examine the adjusted association for different cut-off concentrations of postoperative myocardial injury and non-cardiac outcome. RESULTS: In 203 patients, 690 high-sensitive cardiac troponin T measurements were performed. Fifty-three patients (26%) had a non-cardiac complication within 30 days after surgery. Hospital mortality was 4% (8/203). An increase in cardiac troponin T concentration ≥100% compared with baseline was a superior independent predictor of non-cardiac postoperative clinical complications (adjusted odds ratio 4.3, 95% confidence interval 1.8-10.1, P

Intensive care units regularly have patients in whom a curative treatment plan is changed to palliative treatment. This does not only concern the medical and technical aspects, but also medical-ethical problems and questions relating to communication and organization. All these play a part in making a correct assessment. It is logical that nurses play an important part in this process as they have the most contact with the patient and his/her family. The optimalization of collaboration between doctors and nurses by means of the mutual exchange of information unique to each different discipline as well as acknowledging one another's talents and skills, forms the basis of good communication and organization concerning end-of-life decisions. It is useful to formalize this collaboration by means of multidisciplinary discussions

In contrast to the development of new drugs, strict guidelines for the development of new diagnostic methods do not exist. A diagnostic test can be made available without proper evaluation of its clinical utility, which can lead to its premature introduction and inappropriate use. In this review suggestions are made regarding the criteria that should be met during the various phases of development of new diagnostic techniques. It is suggested that a new diagnostic test should only be implemented in routine clinical use after all phases of development have been properly performed with good results. Several diagnostic tests for pulmonary embolism (pulmonary angiography, ventilation-perfusion scintigraphy, D-dimer assays, and spiral computed tomography), and the studies evaluating them, are thereafter reviewed. It is concluded that present pulmonary angiography and ventilation-perfusion scintigraphy are the only properly evaluated diagnostic tests for pulmonary embolism. Although new developments, such as D-dimer assays and the spiral computed tomographic scan are certainly promising, further studies are needed to determine their real value and safety in the diagnostic work-up of patients suspected of pulmonary embolism

Pteridological Notes, 3 The genus Polypodium in the Netherlands Both Polypodium vulgare L. (sensu stricto) and P. interjectum Shivas occur in the Netherlands. Most of the differential characters reported in the literature overlap one another rather broadly, so that it is often necessary to use a ’syndrome’ of characters for the naming of individual specimens. The results obtained by the present authors do not correspond with those of SHIVAS (22), ROTHMALER & SCHNEIDER (18), or LENSKI (11) in every respect. The two forms appear to differ in the following features: P. vulgare: Frond lanceolate in outline with the lower pairs of pinnae approximately of equal length along a considerable portion of the frond blade, and the apical part often gradually attenuate. Pinnae with a rounded, obtuse or occasionally acute apex and hardly incised to dentate or serrate margins. Colour of foliage bright or dark green, rarely greyish-green. Sori usually situated closer to the midrib than to the margin or approximately half-way between them. Immature sori orbicular, rarely broadly elliptic, frequently reddish brown. Number of indurated annulus cells 10—15 (—23), mean number 12 per sporangium, about 70 µ broad; number of basal cells 1 (sometimes 2); these cells relatively small. Paraphyses absent. Spores (45—) 55—75(—88) µ long and 27—60 µ broad, upon the average 62 by 40 µ. Scales of the ramentum of the rhizome usually somewhat smaller than those of P. interjectum (but fragile in both species and hence in herbarium specimens not so completely preserved as to provide a reliable diagnostic character). As a rul