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We aimed to investigate whether the dialogue tools My Positive Health (MPH) and Individual Recovery Outcomes Counter (I.ROC) tools were useful for quantitively measuring the positive health construct for monitoring and scientific purposes as well. An observational cross-sectional study was conducted in a representative general Dutch population (the LISS panel) to investigate factor structures and internal consistency from the 42-items MPH and 12-items I.ROC. After randomly splitting the dataset, principal component analysis (PCA) and confirmatory factor analysis (CFA) were applied. Pearson and Spearman correlation coefficient between both tools' total scores were calculated. 2,457 participants completed the questionnaires. A six-factor structure was extracted for MPH (PH42) and a two-factor structure for I.ROC (I.ROC12). Explained variances were 68.1% and 56.1%, respectively. CFA resulted in good fit indices. Cronbach's alphas were between 0.74 to 0.97 (PH42) and 0.73 to 0.87 (I.ROC12). Pearson correlation between the total scores was 0.8 and Spearman correlation was 0.77. Both PH42 and I.ROC12 are useful to quantitatively measure positive health aspects which can be summarised in sum scores. The dimensions found in this study and the corresponding item division differed from the dimensions of the original dialogue tools. Further research is recommended focussing on item reduction for PH42, factor structure of I.ROC, assessment of construct validity (in a general population) and response scales in more depth. [ABSTRACT FROM AUTHOR]

Aim: Parents of children born preterm have identified outcomes to be measured for audit and research at 18-24 months of age: child well-being, quality of life/function, socio-emotional/behavioural outcomes, respiratory, feeding, sleeping, and caregiver mental health. The aim was to identify the best tools to measure these seven domains. Methods: Seven working groups completed literature reviews and evaluated potential tools to measure these outcomes in children aged 18-24 months. A group of experts and parents voted on the preferred tools in a workshop and by questionnaire. Consensus was 80% agreement. Results: Consensus was obtained for seven brief, inexpensive, parent friendly valid measures available in English or French for use in a minimum dataset and potential alternative measures for use in funded research. Conclusion: Valid questionnaires and tools to measure parent-identified outcomes in young preterm children exist. This study will facilitate research and collection of data important to families. [ABSTRACT FROM AUTHOR]

Abstract Knowledge gaps exist regarding optimal silver diammine fluoride (SDF) regimens and the efficacy of new products for arresting dental caries in young children. We evaluated the effectiveness of 38%-SDF (SDI-RivaStar), Tiefenfluorid (TF) comparing with Placebo (P), all in conjunction with behavioural modification (BM), in preventing major complications (endodontic/extractions/pain)—a patient-centred outcome—due to early childhood caries over 12 months in children under 71-months. A six-arm, patient/parent-blinded, superiority, placebo-controlled randomised control trial at the university clinic in Riga, Latvia, from 1/9/20-31/8/22 (Protocol registration ISRCTN17005348). The trial tested six protocols, using three compounds (P/SDF/TF) under two regimes: annual and biannual (P1/P2/TF1/TF2/SDF1/SDF2) for major complications. Secondary outcomes included minor complications and parental satisfaction. All groups received BM. 373/427 randomised children (87.3%) completed the study. SDF2 had a significantly lower rate and risk of major (21.5%, OR = 0.28, 95%CI [0.11, 0.72], p 0.05). SDF biannual application with BM effectively prevented major complications of early childhood caries and was well accepted by children and their parents. Trial registration number: ISRCTN17005348, principal investigator: Ilze Maldupa, registration date: 30/06/2021. Clinical trial registration number: ISRCTN registry: ISRCTN17005348, https://doi.org/10.1186/ISRCTN17005348 , registration date: 30/06/2021.

Background: There is a growing evidence-base underpinning implementation of person-centred outcome measures into adult palliative care. However evidence on how best to achieve this with children facing life-threatening and life-limiting conditions is limited. Aim: To identify the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures for children with life-limiting and life-threatening conditions. Design: Cross-sectional qualitative semi-structured interview study with key stakeholders analysed using Framework analysis informed by the adapted-Consolidated Framework for Implementation Research. Setting/participants: A total of n = 26 children with life-limiting or life-threatening conditions, n = 40 parents/carers, n = 13 siblings and n = 15 health and social care professionals recruited from six hospitals and three children's hospices and n = 12 Commissioners of health services. Results: All participants were supportive of future implementation of person-centred outcome measures into care. Anticipated benefits included: better understanding of patient and family priorities, improved communication and collaborative working between professionals and families and standardisation in data collection and reporting. Anticipated risks included increased workload for staff and measures not being used as intended. Implementation barriers included: acceptability and usability of outcome measures by children; burden and capacity of parents/carers regarding completion; privacy concerns; and language barriers. Implementation facilitators included designing measures using language that is meaningful to children and families, ensuring potential benefits of person-centred outcome measures are communicated to encourage 'buy-in' and administering measures with known and trusted professional. Conclusions: Implementation of person-centred outcome measures offer potential benefits for children with life-limiting and life-threatening conditions. Eight recommendations are made to maximise benefits and minimise risks in implementation. [ABSTRACT FROM AUTHOR]

Background: Health research teams increasingly partner with stakeholders to produce research that is relevant, accessible, and widely used. Previous work has covered stakeholder group identification.Objective: We aimed to develop factors for health research teams to consider during identification and invitation of individual representatives in a multi-stakeholder research partnership, with the aim of forming equitable and informed teams.Design: Consensus development.Participants: We involved 16 stakeholders from the international Multi-Stakeholder Engagement (MuSE) Consortium, including patients and the public, providers, payers of health services/purchasers, policy makers, programme managers, peer review editors, and principal investigators.Approach: We engaged stakeholders in factor development and as co-authors of this manuscript. Using a modified Delphi approach, we gathered stakeholder views concerning a preliminary list of 18 factors. Over two feedback rounds, using qualitative and quantitative analysis, we concentrated these into ten factors.Key Results: We present seven highly desirable factors: 'expertise or experience', 'ability and willingness to represent the stakeholder group', 'inclusivity (equity, diversity and intersectionality)', 'communication skills', 'commitment and time capacity', 'financial and non-financial relationships and activities, and conflict of interest', 'training support and funding needs'. Additionally, three factors are desirable: 'influence', 'research relevant values', 'previous stakeholder engagement'.Conclusions: We present factors for research teams to consider during identification and invitation of individual representatives in a multi-stakeholder research partnership. Policy makers and guideline developers may benefit from considering the factors in stakeholder identification and invitation. Research funders may consider stipulating consideration of the factors in funding applications. We outline how these factors can be implemented and exemplify how their use has the potential to improve the quality and relevancy of health research. [ABSTRACT FROM AUTHOR]

Aims Comorbid psychiatric disorders and the use of psychotropic medication are common among cardiac patients and have been found to increase the risk of mortality. The aims of this study were: (i) to describe the use of psychotropic medication among cardiac patients with and without symptoms of anxiety, (ii) to estimate the association between use of psychotropic medication prior to hospital admission and all-cause, 1-year mortality following discharge, and (iii) to estimate the risk of mortality among users and non-users of psychotropic medication with or without self-reported symptoms of anxiety. Methods and results Cardiac patients from the DenHeart survey were included, providing information on self-reported symptoms of anxiety. From national registers, information on the use of psychotropic medication 6 months prior to hospitalization and mortality was obtained. By logistic regression analyses, the association between the use of psychotropic medication, anxiety, and all-cause, 1-year mortality was estimated. The risk of subsequent incident use of psychotropic medication among patients with and without anxiety was furthermore explored. All analyses were fully adjusted. A total of 12 913 patients were included, of whom 18% used psychotropic medication, and 3% died within 1 year. The use of psychotropic medication was found to be associated with increased 1-year all-cause mortality [odds ratio 1.90 (95% confidence interval, 1.46–2.46)]. Patients with symptoms of anxiety were significantly more likely to use psychotropic medication following hospital discharge [2.47 (2.25–2.72)]. Conclusion The use of psychotropic medication was associated with 1-year mortality. Thus, the use of psychotropic medication might explain some of the association between anxiety and mortality; however, the association is probably mainly a reflection of the underlying mental illness, rather than the use of psychotropic medication. [ABSTRACT FROM AUTHOR]

Background: A key principle of patient-centred outcomes research (PCOR) is the engagement of patients and other stakeholders in the research process, but the evidence is still emerging on the impact patient engagement has on the research process. A 10-step framework has been developed to provide methodological guidance for patient engagement throughout the research process. However, the utility of the framework for patient engagement has not been tested in actual research studies.Objective: To describe researcher's overall experiences with engaging patients at the beginning of their PCOR research process.Methods: Twelve in-depth interviews were conducted face-to-face and by telephone with PCOR researchers between November 2014 and January 2015 at an Academic Health Center in the eastern USA. All data were audiotaped and transcribed, and NVivo 10 software was used for data analysis.Results: Four major themes emerged (i) the importance of patient engagement and how it provides 'a perspective you can't get unless you talk to the patient'; (ii) the impact of patient engagement; (iii) challenges and barriers of engagement; and (iv) the realities of patient engagement.Conclusions: Researchers' views illustrate the need to re-evaluate patient engagement in PCOR based on current realities. Given the many challenges to engagement that researchers encounter, it may be more productive to redefine the process of patient engagement so that the issues researchers now face are taken into account in future funding announcements, engagement rubrics and methodology frameworks developed. [ABSTRACT FROM AUTHOR]

Background: Improved clinical effectiveness and therefore positive modification of multiple sclerosis (MS) with basic therapy can be achieved by long-term regular intake of drugs as prescribed but investigations have shown that a high percentage of patients do not take their medications as prescribed. Objectives: We assessed the satisfaction and adherence of patients with MS with their current disease-modifying treatment under clinical practice conditions. We compared different facets of satisfaction as well as their internal relationship and identified predictors in an exploratory manner. Methods: Therapy satisfaction in patients with relapsing–remitting multiple sclerosis (THEPA-MS) was a noninterventional, prospective cross-sectional study performed throughout Germany in 2013 and 2014, and included patients with clinically isolated syndrome or relapsing–remitting MS. We applied a standardized approach to document satisfaction and adherence by patient-reported outcomes (Treatment Satisfaction Questionnaire for Medication) as well as by physician ratings. Results: Of 3312 patients with a mean age of 43.7 years, 73.3% were women and the mean level of disability according to the Expanded Disability Status Scale was 2.29; 13.3% did not receive any medication at the time of documentation, 21.3% received interferon β1a intramuscularly, 20.7% had interferon β1a subcutaneously, 17.0% had interferon β1b subcutaneously and 23.7% had glatiramer acetate. Adherence rates varied between 60% (lifetime) and 96.5% (current medication). Differences between current medications were found for side effects and convenience scores but not for effectiveness, satisfaction and adherence. Higher global satisfaction and effectiveness were associated with fewer relapses, longer duration of medication, lower disability score and the absence of several side effects. Conclusion: In a connected model of patient satisfaction, effectiveness, side effects, convenience and adherence, patients’ individual needs and concerns have to be addressed. Most differences were found with respect to side effects and convenience of treatment. Therefore, an improvement in these two domains seems to be the most promising proximate approach to elevate adherence levels. [ABSTRACT FROM AUTHOR]

Aims: Patient-reported quality of life and anxiety/depression scores provide important prognostic information independently of traditional clinical data. The aims of this study were to describe: (a) mortality and cardiac events one year after hospital discharge across cardiac diagnoses; (b) patient-reported outcomes at hospital discharge as a predictor of mortality and cardiac events., Design: A cross-sectional survey with register follow-up., Methods: Participants: All patients discharged from April 2013 to April 2014 from five national heart centres in Denmark., Main Outcomes: Patient-reported outcomes: anxiety and depression (Hospital Anxiety and Depression Scale); perceived health (Short Form-12); quality of life (HeartQoL and EQ-5D); symptom burden (Edmonton Symptom Assessment Scale). Register data: mortality and cardiac events within one year following discharge., Results: There were 471 deaths among the 16,689 respondents in the first year after discharge. Across diagnostic groups, patients reporting symptoms of anxiety had a two-fold greater mortality risk when adjusted for age, sex, marital status, educational level, comorbidity, smoking, body mass index and alcohol intake (hazard ratio (HR) 1.92, 95% confidence interval (CI) 1.52-2.42). Similar increased mortality risks were found for patients reporting symptoms of depression (HR 2.29, 95% CI 1.81-2.90), poor quality of life (HR 0.46, 95% CI 0.39-0.54) and severe symptom distress (HR 2.47, 95% CI 1.92-3.19). Cardiac events were predicted by poor quality of life (HR 0.71, 95% CI 0.65-0.77) and severe symptom distress (HR 1.58, 95% CI 1.35-1.85)., Conclusions: Patient-reported mental and physical health outcomes are independent predictors of one-year mortality and cardiac events across cardiac diagnoses.

Objective: To analyse the results of removing physical restraints from elderly patients with dementia living in nursing homes. This objective is part of a wider process of change in residential care., Methods: Quasi-experimental study conducted in two residences from May 2010 to May 2012. Information was collected at 7 time points and longitudinal analyses were performed. After training staff, the physical restraints in El Puig centre were phased out, while in the Conarda centre, restraints were still applied to elderly people. The main variables studied were: falls, psychotropic medication prescriptions, different indicators of mental impairment, and degree of dependence (Norton, NPI, Mini-mental, Tinetti, Barthel)., Results: In the El Puig centre all the physical restraints were removed. A slight improvement was seen in the number of falls, and their consequences. The ANOVA showed significant improvements in the centre that removed restraints in prescribing psychotropic medications, cognitive impairment, and behavioural changes., Discussion: It is shown that removing physical restraints do not cause negative effects as regards the number of falls, and also positively affects the welfare and independence of elderly people (through changes in behaviour and mental impairment). Furthermore, it is demonstrated that this program must be accompanied by the reduction and control of medicines (withdrawal of the number of psychotropic prescriptions)., (Copyright © 2014 SEGG. Published by Elsevier Espana. All rights reserved.)