Systematic reviews of occupational therapy interventions: summarizing research evidence and highlighting the gaps

As services are commissioned based on effectiveness, occupational therapists are under pressure to demonstrate the efficacy of their interventions. Occupational therapists also need to know that the interventions they are providing are effective. Robertson et al (2013) demonstrated that the occupational therapy literature is important for clinicians and is an essential part of their practice. However, as more research is published, it can be increasingly time-consuming and confusing for clinicians to keep abreast of the current literature. Occupational therapy-related research may be published in different forms, in a range of locations, and be of varying methodological quality. Furthermore, readily available published studies that investigate occupational therapy efficacy may not be sufficiently powered, or may lack external validity, when applied to different clinical settings. When well conducted, systematic reviews provide a useful way of synthesizing and evaluating the evidence on a particular topic and, to some extent, provide a solution to this problem. This paper focuses upon reviews of randomized controlled trials, as these provide the highest quality of evidence on the question of a particular intervention’s effectiveness. The merits of reviews of qualitative studies are also considered, together with the possibility of combining more than one type of review

Understanding parent experiences of end-of-life care for children: a systematic review and qualitative evidence synthesis

Background: An estimated 21 million children worldwide would benefit from palliative care input and nearly 8 million die each year. For parents of these children this is an intensely emotional and painful time through which they will need support. There is a lack of synthesised research about how parents experience the care delivered to their child at the end of life. Aim: To systematically identify and synthesise qualitative research on parents’ experiences of end-of-life care of their child. Design: A qualitative evidence synthesis was conducted. The review protocol was registered in PROSPERO (CRD42021242946). Data sources: MEDLINE, EMBASE, CINAHL, PsycINFO and Web of Science databases were searched for qualitative studies published post-2000 to April 2020. Studies were appraised for methodological quality and data richness. Confidence in findings was assessed by GRADE-CERQual. Results: 95 studies met the eligibility criteria. A purposive sample of 25 studies was taken, of good-quality papers with rich data describing the experience of over 470 parents. There were two overarching themes: parents of children receiving end-of-life care experienced a profound need to fulfil the parental role; and care of the parent. Subthemes included establishing their role, maintaining identity, ultimate responsibility, reconstructing the parental role, and continuing parenting after death. Conclusions: Services delivering end-of-life care for children need to recognise the importance for parents of being able to fulfil their parental role and consider how they enable this. What the parental role consists of, and how it’s expressed, differs for individuals. Guidance should acknowledge the need to enable parents to parent at their child’s end of life

A concept mapping study evaluating the UK's first NHS generic fatigue clinic.

Importance - Fatigue is a significant and debilitating symptom affecting 25% of the population. It occurs in those with a range of chronic diseases, can be idiopathic and in 0.2-0.4% of the UK population occurs in combination with other symptoms that together constitute chronic fatigue syndrome (CFS). Until recently, NHS clinical services only focussed upon CFS and excluded the majority of fatigued patients who did not meet the CFS diagnostic criteria. The CRESTA Fatigue interdisciplinary clinic was established in 2013 in response to this unmet need. Objective - To identify the service needs of the heterogeneous group of patients accessing the CRESTA Fatigue Clinic, to prioritize these needs, to determine whether each is being met and to plan targeted service enhancements. Design - Using a group concept mapping approach, we objectively identified the shared understanding of service users accessing this novel clinic. Setting - NHS Clinics for Research & Service in Themed Assessment (CRESTA) Fatigue Clinic, Newcastle Upon Tyne, UK. Participants - Patients (n = 30) and referrers (n = 10) to the CRESTA Fatigue Clinic contributed towards a statement generation exercise to identify ways the clinic could support service users to improve their quality of life. Patients (n = 46) participated in the sorting and rating task where resulting statements were sorted into groups similar in meaning and rated for 'importance' and 'current success'. Main outcome and measure - We mapped the needs of patients attending the CRESTA Fatigue Clinic and identified which high-priority needs were being successfully met and which were not. Results - Multidimensional scaling and hierarchical cluster analysis depicted the following eight themed clusters from the data which related to various service-user requirements: 'clinic ethos', 'communication', 'support to self-manage', 'peer support', 'allied health services', 'telemedicine', 'written information' and 'service operation'. Service improvement targets were identified within value bivariate plots of the statements. Conclusion and relevance - Service development concepts were grouped into thematic clusters and prioritized for both importance and current success. The resulting concept maps depict where the CRESTA Fatigue Clinic successfully addresses issues which matter to patients and highlights areas for service enhancement. Unmet needs of patients have been identified in a rigorous service evaluation, and these are currently being addressed in collaboration with a service-user group

Using information and communication technologies to improve the management of pain from advanced cancer in the community: Qualitative study of the experience of implementation for patients and health professionals in a trial

In cancer care, there are emerging information and communication technology systems being developed, enabling real-time information sharing between patients and health professionals. This study explored health professionals' and patients' perceptions of their engagement with an information and communication technology system for pain management to understand the mechanisms that could support implementation into routine palliative care practice. This was a qualitative study, embedded within a randomised control trial, using semi-structured face-to-face interviews. Data were analysed using thematic analysis. The role of health professionals was a key component to patient engagement with the information and communication technology system. Where patients engaged with the information and communication technology system, both patients and health professionals reported benefits to system use in addition to usual care. Implementation issues were identified that can be used to guide future system development to support pain management in the context of routine clinical care in palliative care services. Where interventions are dependent on multiple providers, collaborative working and consideration of the context within which they are set are needed

Uptake of breast cancer preventive therapy in the UK: results from a multicentre prospective survey and qualitative interviews

Purpose: Uptake of preventive therapy for women at increased breast cancer risk in England is unknown following the introduction of UK clinical guidelines in 2013. Preventive therapy could create socioeconomic inequalities in cancer incidence if it is more readily accepted by particular socio-demographic groups. In this multicentre study, we investigated uptake of tamoxifen and evaluated socio-demographic and clinical factors associated with initiation. We explored women’s experiences of treatment decision-making using qualitative interview data. Methods: Between September 2015 and December 2016, women (n=732) attending an appointment at one of 20 centres in England to discuss breast cancer risk were approached to complete a survey containing socio-demographic details and nulliparity. Of the baseline survey respondents (n=408/732, 55.7% response rate), self-reported uptake of tamoxifen at 3-month follow-up was reported in 258 (63.2%). Sixteen women participated in semi-structured interviews. Results: One in seven (38/258=14.7%) women initiated tamoxifen. Women who had children were more likely to report use of tamoxifen than those without children (OR=5.26; 95%CI: 1.13–24.49, p=0.035). Interview data suggested that women weigh up risks and benefits of tamoxifen within the context of familial commitments, with exposure to significant other’s beliefs and experiences of cancer and medication a basis for their decision. Conclusions: Uptake of tamoxifen is low in clinical practice. There were no socio-demographic differences in uptake, suggesting that the introduction of breast cancer preventive therapy is unlikely to create socioeconomic inequalities in cancer incidence. Women’s decision-making was influenced by familial priorities, particularly having children

Provision of care for children with medical complexity in tertiary hospitals in England : qualitative interviews with health professionals

Background Due to medical and technological advancements, children with medical complexity are a growing population. Although previous research has identified models of care and experiences when caring for this population, the majority are the USA or Canadian based. Therefore, the aim was to identify models of care for children with medical complexity and barriers and facilitators to delivering high-quality care for this population from a 'free at point of care' national health service. Method Qualitative semistructured interviews were conducted with hospital clinicians across England and analysed using a thematic framework approach. Results Thirty-seven clinicians from 11 hospital sites were interviewed. In 6 of the hospital sites, there were 14 services identified. Majority of services had a variety of components, some shared and some unique to the individual service. Clinicians faced barriers and facilitators when caring for this population as demonstrated across five categories. Conclusions There is limited guidance and evidence on the most effective and efficient models for providing care for this population. It is not possible to determine what a service should look like as there is no consensus on the most appropriate model of care as shown in this study. Due to their complex needs, this population require coordination to ensure high standards of care. However, this was not always possible as clinicians faced barriers such as time constraints, silo thinking and a lack of available housing

Multidisciplinary Software Design for the Routine Monitoring and Assessment of Pain in Palliative Care Services: The Development of PainCheck

PURPOSE The use of health information technology (HIT) to support patient and health professional communication is emerging as a core component of modern cancer care. Approaches to HIT development for cancer care are often underreported, despite their implementation in complex, multidisciplinary environments, typically supporting patients with multifaceted needs. We describe the development and evaluation of an e-health tool for pain management in patients with advanced cancer, arising from collaboration between health researchers and a commercial software development company. METHODS We adopted a research-led development process, involving patients with advanced cancer and their health professionals, focusing on use within real clinical settings. A software development approach (disciplined agile delivery) was combined with health science research methods (ie, diary studies, face-to-face interviews, questionnaires, prototyping, think aloud, process reviews, and pilots). Three software iterations were managed through three disciplined agile delivery phases to develop PainCheck and prepare it for use in a clinical trial. RESULTS Findings from development phases (inception, elaboration, and construction) informed the design and implementation of PainCheck. During the transition phase, where PainCheck was evaluated in a randomized clinical trial, there was variation in the extent of engagement by patients and health professionals. Prior personal experience and confidence with HIT led to a gatekeeping effect among health professionals, who were reluctant to introduce PainCheck to patients. Patients who did use PainCheck seemed to benefit, and no usability issues were reported. CONCLUSION Health science research methods seemed to help in the development of PainCheck, although a more rigorous application of implementation science methodologies might help to elucidate further the barriers and facilitators to adoption and inform an evidence-based plan for future implementation

Patient and professional experiences of palliative care referral discussions from cancer services : a qualitative interview study

Objectives The aim of this paper was to identify current barriers, facilitators and experiences of raising and discussing palliative care with people with advanced cancer. Methods Semi‐structured interviews were conducted with patients with advanced cancer and healthcare professionals (HCPs). Patients were included who had and had not been referred to palliative care. Transcripts were analysed using framework analysis. Results Twenty‐four patients and eight HCPs participated. Two overarching themes and five sub‐themes emerged: Theme one—referral process: timing and triggers, responsibility. Theme two—engagement: perception of treatment, prognosis and palliative care, psychological and emotional preparedness for discussion, and understanding how palliative care could benefit present and future care. Conclusion There is a need to identify suitable patients earlier in their cancer trajectory, address misconceptions about palliative care, treatment and prognosis, and better prepare patients and HCPs to have meaningful conversations about palliative care. Patients and HCPs need to establish and communicate the relevance of palliative care to the patient's current and future care, and be clear about the referral process

A systematic review of non-pharmacological interventions for primary Sjögren’s syndrome

The objective of this systematic review was to assess the efficacy of non-pharmacological interventions for the management of primary Sjögren’s syndrome. We searched the following databases from inception to September 2014; Cochrane Database of Systematic Reviews; Medline; Embase; PsychINFO; Cinahl and clinical trials registers. We included randomised controlled trials of any non-pharmacological interventions. Two review authors independently reviewed titles and abstracts against the inclusion/exclusion criteria and independently assessed trial quality and extracted data. 1463 studies were identified of which 17 full text articles were screened and 5 studies were included in the review with a total of 130 participants randomised. The included studies investigated effectiveness of an oral lubricating device for dry mouth, acupuncture for dry mouth, lacrimal punctum plugs for dry eyes and psychodynamic group therapy for coping with symptoms. Overall the studies were of low quality and at high risk of bias. Although one study showed punctum plugs to improve dry eyes it was too small for the findings to be conclusive. Overall we identified no evidence to support any non-pharmacological interventions to improve PSS. The area needs quality large randomised controlled trials that are reported according to CONSORT guidelines and address important issues to patients

Dynamic Heterogeneity and DNA Methylation in Embryonic Stem Cells

Cell populations can be strikingly heterogeneous, composed of multiple cellular states, each exhibiting stochastic noise in its gene expression. A major challenge is to disentangle these two types of variability and to understand the dynamic processes and mechanisms that control them. Embryonic stem cells (ESCs) provide an ideal model system to address this issue because they exhibit heterogeneous and dynamic expression of functionally important regulatory factors. We analyzed gene expression in individual ESCs using single-molecule RNA-FISH and quantitative time-lapse movies. These data discriminated stochastic switching between two coherent (correlated) gene expression states and burst-like transcriptional noise. We further showed that the “2i” signaling pathway inhibitors modulate both types of variation. Finally, we found that DNA methylation plays a key role in maintaining these metastable states. Together, these results show how ESC gene expression states and dynamics arise from a combination of intrinsic noise, coherent cellular states, and epigenetic regulation