Developing a service user informed intervention to improve participation and ability to perform daily activities in primary Sjögren’s syndrome: a mixed-methods study protocol

Introduction: A significant proportion of patients with primary Sjögren’s syndrome (PSS) is functionally impaired and experience difficulties participating in various aspects of everyday life. There is currently no evidence of efficacy for non-pharmacological interventions aimed specifically at supporting the patients with PSS to improve their participation and ability to perform daily activities. This paper describes a research protocol for a mixed-methods study to develop an intervention to improve these outcomes. The protocol follows the Medical Research Council framework for complex interventions. Methods and analysis: We will use group concept mapping with the patients, adults who live with them and healthcare professionals to identify factors which prevent people with PSS from participating in daily life and performing daily activities. The factors will be prioritised by participants for importance and feasibility and will inform an intervention to be delivered within a National Health Service (NHS) setting. Evidence-based intervention techniques will be identified for the prioritised factors and combined into a deliverable intervention package. Key stakeholders will comment on the intervention content and mode of delivery through focus groups, and the data will be used to refine the intervention. The acceptability and feasibility of the refined intervention will be evaluated in a future study. Ethics and dissemination: The study has been approved by an NHS Research Ethics Committee, REC Reference: 13/NI/0190. The findings of this study will be disseminated in peer-reviewed journals and through presentation at national and international conferences. Trial registration number: UKCRN Study ID: 15939

Towards a science and practice of resilience in the face of pain

The primary objective of this paper is to discuss how a resilience approach to (chronic) pain may advance our current understanding of (mal)adaptation to pain. Different resilience perspectives are described, and future challenges for research, prevention and treatment of (chronic) pain are discussed. Literature searches were performed in Web of Science and PubMed to identify relevant literature on risk and resilience in the context of pain. Resilience can be best defined as the ability to restore and sustain living a fulfilling life in the presence of pain. The Psychological Flexibility Model, the Broaden-and-Build Theory, and Self-Determination Theory are described as theories that may provide insight into resilience within the context of (chronic) pain. We describe how a resilience paradigm shifts the outcomes to pursue in pain research and intervention and argue the need for including positive outcomes in addition to negative outcomes. Psychological flexibility, positive affect and basic psychological needs satisfaction are described as potentially important resilience mechanisms with the potential to target both sustainability and recovery from pain. A resilience approach to chronic pain may have important implications for the prevention and treatment of chronic pain problems, as it may give specific indications on how to empower patients to continue living a fulfilling life (in the presence of pain)

Informal community support for parents of pre-school children: A comparative study investigating the subjective experience of parents attending community-based toddler groups in different socio-economic situations

"Within the United Kingdom, the importance of the appropriate parenting of children in their early years has received significant political support. However, it has been found that positive outcomes for young children, in terms of their present experience and future life chances, are often significantly weakened by the impact of poverty. A phenomenological scoping study was undertaken to explore the reasons why parents living in poverty access informal social support networks, in the form of community-based toddler groups. The study found that engagement with these networks has value for parents in terms of their mental well-being and their peer education, both of which support their ability to parent a young child appropriately.

The Amsterdam Studies of Acute Psychiatry I (ASAP-I); A prospective cohort study of determinants and outcome of coercive versus voluntary treatment interventions in a metropolitan area

Background The overall number of involuntary admissions is increasing in many European countries. Patients with severe mental illnesses more often progress to stages in which acute, coercive treatment is warranted. The number of studies that have examined this development and possible consequences in terms of optimizing health care delivery in emergency psychiatry is small and have a number of methodological shortcomings. The current study seeks to examine factors associated with compulsory admissions in the Amsterdam region, taking into account a comprehensive model with four groups of predictors: patient vulnerability, social support, responsiveness of the health care system and treatment adherence. Methods/Design This paper describes the design of the Amsterdam Study of Acute Psychiatry-I (ASAP-I). The study is a prospective cohort study, with one and two-year follow-up, comparing patients with and without forced admission by means of a selected nested case-control design. An estimated total number of 4,600 patients, aged 18 years and over, consecutively coming into contact with the Psychiatric Emergency Service Amsterdam (PESA) are included in the study. From this cohort, a randomly selected group of 125 involuntary admitted subjects and 125 subjects receiving non-coercive treatment are selected for further evaluation and comparison. First, socio-demographic, psychopathological and network characteristics, and prior use of health services will be described for all patients who come into contact with PESA. Second, the in-depth study of compulsory versus voluntary patients will examine which patient characteristics are associated with acute compulsory admission, also taking into account social network and healthcare variables. The third focus of the study is on the associations between patient vulnerability, social support, healthcare characteristics and treatment adherence in a two-year follow-up for patients with or without involuntarily admittance at the index consultation. Discussion The current study seeks to establish a picture of the determinants of acute compulsory admissions in the Netherlands and tries to gain a better understanding of the association with the course of illness and patient's perception of services and treatment adherence. The final aim is to find specific patient and health care factors that can be influenced by adjusting treatment programs in order to reduce the number of involuntary admissions

Use of eHealth technologies to enable the implementation of musculoskeletal Models of Care: Evidence and practice

Musculoskeletal (MSK) conditions are the second leading cause of morbidity-related burden of disease globally. EHealth is a potentially critical factor that enables the implementation of accessible, sustainable and more integrated MSK models of care (MoCs). MoCs serve as a vehicle to drive evidence into policy and practice through changes at a health system, clinician and patient level. The use of eHealth to implement MoCs is intuitive, given the capacity to scale technologies to deliver system and economic efficiencies, to contribute to sustainability, to adapt to low-resource settings and to mitigate access and care disparities. We follow a practice-oriented approach to describing the ‘what’ and ‘how’ to harness eHealth in the implementation of MSK MoCs. We focus on the practical application of eHealth technologies across care settings to those MSK conditions contributing most substantially to the burden of disease, including osteoarthritis and inflammatory arthritis, skeletal fragility-associated conditions and persistent MSK pain

Pain coping skills training for African Americans with osteoarthritis (STAART): study protocol of a randomized controlled trial

Background: African Americans bear a disproportionate burden of osteoarthritis (OA), with higher prevalence rates, more severe pain, and more functional limitations. One key barrier to addressing these disparities has been limited engagement of African Americans in the development and evaluation of behavioral interventions for management of OA. Pain Coping Skills Training (CST) is a cognitive-behavioral intervention with shown efficacy to improve OA-related pain and other outcomes. Emerging data indicate pain CST may be a promising intervention for reducing racial disparities in OA symptom severity. However, there are important gaps in this research, including incorporation of stakeholder perspectives (e.g. cultural appropriateness, strategies for implementation into clinical practice) and testing pain CST specifically among African Americans with OA. This study will evaluate the effectiveness of a culturally enhanced pain CST program among African Americans with OA. Methods/Design: This is a randomized controlled trial among 248 participants with symptomatic hip or knee OA, with equal allocation to a pain CST group and a wait list (WL) control group. The pain CST program incorporated feedback from patients and other stakeholders and involves 11 weekly telephone-based sessions. Outcomes are assessed at baseline, 12 weeks (primary time point), and 36 weeks (to assess maintenance of treatment effects). The primary outcome is the Western Ontario and McMaster Universities Osteoarthritis Index, and secondary outcomes include self-efficacy, pain coping, pain interference, quality of life, depressive symptoms, and global assessment of change. Linear mixed models will be used to compare the pain CST group to the WL control group and explore whether participant characteristics are associated with differential improvement in the pain CST program. This research is in compliance with the Helsinki Declaration and was approved by the Institutional Review Boards of the University of North Carolina at Chapel Hill, Durham Veterans Affairs Medical Center, East Carolina University, and Duke University Health System. Discussion: This culturally enhanced pain CST program could have a substantial impact on outcomes for African Americans with OA and may be a key strategy in the reduction of racial health disparities.Funded by Patient-Centered Outcomes Research Institute (PCORI) Award (AD-1408-19519)

Pain Coping Skills Training for African Americans With Osteoarthritis Study: Baseline Participant Characteristics and Comparison to Prior Studies

Background: The Pain Coping Skills Training for African Americans with OsteoaRTthritis (STAART) trial is examining the effectiveness of a culturally enhanced pain coping skills training (CST) program for African Americans with osteoarthritis (OA). This disparities-focused trial aimed to reach a population with greater symptom severity and risk factors for poor pain-related outcomes than previous studies. This paper compares characteristics of STAART participants with prior studies of CST or cognitive behavioral therapy (CBT)-informed training in pain coping strategies for OA. Methods: A literature search identified 10 prior trials of pain CST or CBT-informed pain coping training among individuals with OA. We descriptively compared characteristics of STAART participants with other studies, in 3 domains of the National Institutes of Minority Health and Health Disparities' Research Framework: Sociocultural Environment (e.g., age, education, marital status), Biological Vulnerability and Mechanisms (e.g, pain and function, body mass index), and Health Behaviors and Coping (e.g., pain catastrophizing). Means and standard deviations (SDs) or proportions were calculated for STAART participants and extracted from published manuscripts for comparator studies. Results: The mean age of STAART participants, 59 years (SD = 10.3), was lower than 9 of 10 comparator studies; the proportion of individuals with some education beyond high school, 75%, was comparable to comparator studies (61-86%); and the proportion of individuals who are married or living with a partner, 42%, was lower than comparator studies (62-66%). Comparator studies had less than about 1/3 African American participants. Mean scores on the Western Ontario and McMaster Universities Osteoarthritis Index pain and function scales were higher (worse) for STAART participants than for other studies, and mean body mass index of STAART participants, 35.2 kg/m2 (SD = 8.2), was higher than all other studies (30-34 kg/m2). STAART participants' mean score on the Pain Catastrophizing scale, 19.8 (SD = 12.3), was higher (worse) than other studies reporting this measure (7-17). Conclusions: Compared with prior studies with predominantly white samples, STAART participants have worse pain and function and more risk factors for negative pain-related outcomes across several domains. Given STAART participants' high mean pain catastrophizing scores, this sample may particularly benefit from the CST intervention approach

Corticospinal excitability as a biomarker of myofascial pain syndrome

Abstract Introduction: Myofascial pain syndrome (MPS) is a common chronic pain disorder that lacks effective diagnostic criteria. To better understand neurophysiological changes in chronic pain, several trials exploring corticospinal excitability in different populations of patients with chronic pain have been performed. Objectives: In this systematic review, we aimed to investigate the current literature on MPS and intracortical disinhibition, by means of increased intracortical facilitation and decreased intracortical inhibition (ICI). Methods: We performed a search on PubMed to identify clinical trials on MPS and transcranial magnetic stimulation measurements. We then applied the Harford Hill criteria to the identified studies to assess the possible causal relationship between intracortical disinhibition measurements and MPS. Finally, we compared our findings on MPS with other chronic pain conditions. Results: Four studies assessing corticospinal excitability in patients with MPS were found. Although the amount of trials available is limited, all the reported studies indicated an increased intracortical disinhibition in patients with MPS. Importantly, these measurements were also correlated with psychological factors, such as pain catastrophism, or anxiety. However, based on the Harford Hill criteria, we could not assert a strong causal relationship between these markers and MPS. Although intracortical disinhibition has been consistently found in patients having MPS, this lack of cortical inhibition was not only observed in this specific chronic pain syndrome but also in fibromyalgia and neuropathic pain conditions. Conclusion: Intracortical disinhibition seems to be a marker that has been consistently observed in MPS. Future prospective cohort studies could provide new insights in the development of neoplastic and maladaptive changes occurring in chronic pain syndromes and help the development of new therapeutic options

A critique of the revised Conflict Tactics Scales-2 (CTS-2)

The purpose of this review is to critically evaluate the Conflict Tactics Scales-2, a measure used worldwide for research and clinical practices. The reliability, validity and normative samples of the CTS-2 are considered and compared with similar psychometric measures. The limitations of the original CTS have been discussed alongside the CTS-2. Reliability is considered to be good to excellent by alpha coefficient and the variance explained by differing samples or methods of administration. Caution is recommended when interpreting the CTS-2 in clinical settings. Researchers point toward a five-factor structure to the CTS-2. The importance of appropriate norms is discussed and considered crucial when using the tool in settings where reporting patterns may differ. Difficulties in comparing CTS-2 scores across samples, cultures and countries are highlighted. Overall, the CTS-2 is a robust psychometric measure, although it holds limited clinical utility if it is used separately from other sources of information gathering (i.e. psychometric measures or interview). In order to enhance clinical utility, it should be administered alongside measures or clinical interviews that can provide added context regarding violence in the family. More research is required in diverse population samples, cultures/countries and languages