Barriers to Accessing Primary Dental Care in Adults with Alcohol Dependence: A Qualitative Study.

BACKGROUND: People with alcohol dependence (AD) frequently experience oral health problems, but their dental attendance is poor, with limited evidence to the reasons why from their perspective. OBJECTIVE: To explore perceived barriers, motivators, and facilitators to accessing primary dental care in people with AD. METHODS: Qualitative study consisting of remote one-to-one and group semistructured interviews with a convenience sample of adults with lived experience of AD in northern England. Data were audio-recorded, transcribed, and coded. A reflexive thematic analysis method was used; use of COM-B model informed data interpretation. RESULTS: Twenty adults with lived experience of AD participated in 18 one-to-one interviews and 1 group interview (of 3 participants). Barriers to access were fear and physical, social, and environmental factors (physical effects of AD, financial barriers, nonprioritization of oral health). Motivators to access were pain and prioritization of oral health. Facilitators to access were patterns of alcohol use (i.e., sobriety) and dental service provision within recovery services. CONCLUSIONS: Fear of "the dentist" is a major barrier to accessing dental care, and pain is the primary motivator, among people with AD, although neither are unique to this population. Fear and physical, social, and environmental barriers to access contribute to problem-oriented attendance, which negatively affect oral health outcomes. Opportunity to facilitate attendance increases when a person is in remission from AD through their physical capabilities improving. Increasing capability and opportunity can influence attendance beyond the automatic motivation of pain. Provision of dental care within recovery services could facilitate access to care. Understanding the "web of causation" is key to developing any intervention to improve dental access in people with AD. Further research is needed from the perspective of other adult populations with lived experience of AD, as well as of dental professionals, to gain deeper insight into barriers, facilitators, and possible solutions. KNOWLEDGE TRANSFER STATEMENT: The results of this study can help dental professionals understand factors affecting access to primary care in people with alcohol dependence to provide knowledge that may reduce stigma surrounding the disease. Results also demonstrate areas for intervention development for public policy.

Organisational barriers and facilitators to the implementation of best practices within paediatric forensic radiographic practice - A scoping review.

INTRODUCTION: Implementation and application of evidence-based practice through legislation, international and national guidelines and local protocols is integral to the successful undertaking of forensic radiographic practice, because of its medico-legal role. This research aims to evaluate those organisational barriers and facilitators to its effective implementation. METHODS: This scoping review was undertaken according to the JBI updated guidelines using the PCC mnemonic. A systematic search of 10 databases was undertaken to identify literature addressing the research question relating to this aspect of forensic radiography practice. Handsearching and snowballing were also included to enhance this search strategy. The search focussed on forensic imaging of paediatrics, the living and deceased. RESULTS: Of the 301 papers initially selected, 9 articles were identified as eligible for inclusion, encompassing an international perspective. Through Inductive Content Analysis, 5 conceptual categories were developed: ineffective organisational governance, education translation, system brakes, default practice, and value-based judgement. CONCLUSION: The results indicate that there are many complex and multifactorial organisational issues impacting upon effective implementation of best practices within paediatric forensic imaging. There is a need to address these issues, before attempting strategies for future implementation. It is essential to recognise that there can be no one-size-fits approach, but rather tailored strategies are required recognising individual needs within the multi-disciplinary scope of forensic radiographic practice. IMPLICATIONS FOR PRACTICE: Failure to recognise and address the identified issues impacting upon effective implementation, may have significant implications on the processes and individuals involved in the forensic imaging acquisition pathway. Successful addressing of these issues may enable the professionals involved in organisational governance to create a more conducive and receptive environment for best-practice implementation.

Transforming Parkinson's Care in Africa (TraPCAf): protocol for a multimethodology National Institute for Health and Care Research Global Health Research Group project.

BACKGROUND: Parkinson's disease (PD) is the second most common neurodegenerative disorder and, according to the Global Burden of Disease estimates in 2015, was the fastest growing neurological disorder globally with respect to associated prevalence, disability, and deaths. Information regarding the awareness, diagnosis, phenotypic characteristics, epidemiology, prevalence, risk factors, treatment, economic impact and lived experiences of people with PD from the African perspective is relatively sparse in contrast to the developed world, and much remains to be learned from, and about, the continent. METHODS: Transforming Parkinson's Care in Africa (TraPCAf) is a multi-faceted, mixed-methods, multi-national research grant. The study design includes multiple sub-studies, combining observational (qualitative and quantitative) approaches for the epidemiological, clinical, risk factor and lived experience components, as appropriate, and interventional methods (clinical trial component). The aim of TraPCAf is to describe and gain a better understanding of the current situation of PD in Africa. The countries included in this National Institute for Health and Care Research (NIHR) Global Health Research Group (Egypt, Ethiopia, Ghana, Kenya, Nigeria, South Africa and Tanzania) represent diverse African geographies and genetic profiles, with differing resources, healthcare systems, health and social protection schemes, and policies. The research team is composed of experts in the field with vast experience in PD, jointly led by a UK-based and Africa-based investigator. DISCUSSION: Despite the increasing prevalence of PD globally, robust data on the disease from Africa are lacking. Existing data point towards the poor awareness of PD and other neurological disorders on the continent and subsequent challenges with stigma, and limited access to affordable services and medication. This multi-site study will be the first of its kind in Africa. The data collected across the proposed sub-studies will provide novel and conclusive insights into the situation of PD. The selected country sites will allow for useful comparisons and make results relevant to other low- and middle-income countries. This grant is timely, as global recognition of PD and the public health challenge it poses builds. The work will contribute to broader initiatives, including the World Health Organization's Intersectoral global action plan on epilepsy and other neurological disorders. TRIAL REGISTRATION: https://doi.org/10.1186/ISRCTN77014546 .

DEEP Study: Modeling Outcomes and Costs of Persistent Orofacial Pain.

KNOWLEDGE OF TRANSFER STATEMENT: Despite a substantial number of consultations, individuals experiencing the care pathways in this study continued to have far from perfect health over their life course. The modeling suggests they would only experience 18 y in "perfect health." There is considerable scope to improve current care/outcomes and patient experience.

DEEP Study: Indirect and Out-of-pocket Costs of Persistent Orofacial Pain.

Persistent orofacial pain (POFP) is common and caused by a group of conditions affecting the face, head, or mouth. Recent research highlighted a problematic care pathway with high costs to the health care provider, but the financial impact on patients and employers is not understood. This study aimed to describe patient (out-of-pocket) and employer (indirect) costs of POFP and to identify whether the dichotomized Graded Chronic Pain Scale (GCPS) was predictive of costs. A cohort of 198 patients was recruited from primary and secondary care settings in North East England and followed over a 24-mo period. Patients completed the GCPS and Use of Services and Productivity Questionnaire every 6 mo and a Time and Travel Questionnaire at 14 mo. Questionnaires examined the implications of health care utilization on patients' everyday lives and personal finances. Time and travel costs were calculated and applied to use-of-services data to estimate out-of-pocket costs, while the human capital method and QQ method (quantity and quality of work completed) were used to estimate absenteeism and presenteeism costs, respectively. Per person per 6-mo period (in 2017 pounds sterling), mean out-of-pocket costs were £333 (95% CI, £289 to £377), and indirect costs were £1,242 (95% CI, £1,014 to £1,470). Regression analyses indicated that over 6 mo, the GCPS was predictive of the following: out-of-pocket costs-a difference of £311 between low and high GCPS per person per 6-mo period (95% CI, £280 to £342; P < 0.01, n = 705 observations over 24 mo); indirect costs-a difference of £2,312 between low and high GCPS per person per 6-mo period (95% CI, £1,886 to £2,737; P < 0.01; n = 352 observations over 24 mo). This analysis highlights "hidden" costs of POFP and supports the use of the dichotomized GCPS to identify patients at risk of higher impact and associated costs and thereby stratify care pathways and occupational health support appropriately.

Feasibility and acceptability of combining cognitive behavioural therapy techniques with swallowing therapy in head and neck cancer dysphagia.

BACKGROUND: Head and neck cancer squamous cell carcinoma (HNSSC) patients report substantial rates of clinically significant depression and/or anxiety, with dysphagia being a predictor of distress and poorer quality of life. Evidence-based dysphagia interventions largely focus on the remediation of physical impairment. This feasibility study evaluates an intervention which simultaneously uses a psychological therapy approach combined with swallowing impairment rehabilitation. METHODS: This prospective single cohort mixed-methods study, recruited HNSCC patients with dysphagia, from two institutions. The intervention combined Cognitive Behavioural Therapy with swallowing therapy (CB-EST), was individually tailored, for up to 10 sessions and delivered by a speech and language therapist. Primary acceptability and feasibility measures included recruitment and retention rates, data completion, intervention fidelity and the responsiveness of candidate outcome measures. Measures included a swallowing questionnaire (MDADI), EORTC-QLQH&N35, dietary restrictions scale, fatigue and function scales and the Hospital Anxiety and Depression Scale (HADS), administered pre-, post-CB-EST with three month follow-up and analysed using repeated measures ANOVA. Qualitative interviews were conducted to evaluate intervention processes. RESULTS: A total of 30/43 (70%) eligible patients agreed to participate and 25 completed the intervention. 84% were male, mean age 59 yrs. Patients were between 1 and 60 months (median 4) post-cancer treatment. All patients had advanced stage disease, treated with surgery and radiotherapy (38%) or primary chemoradiotherapy (62%). Pre to post CB-EST data showed improvements in MDADI scores (p = 0.002), EORTC-QLQH&N35 (p = 0.006), dietary scale (p < 0.0001), fatigue (p = 0.002) but no change in function scales or HADS. Barriers to recruitment were the ability to attend regular appointments and patient suitability or openness to a psychological-based intervention. CONCLUSIONS: CB-EST is a complex and novel intervention, addressing the emotional, behavioural and cognitive components of dysphagia alongside physical impairment. Preliminary results are promising. Further research is required to evaluate efficacy and effectiveness.

Care Pathways in Persistent Orofacial Pain: Qualitative Evidence from the DEEP Study.

Persistent orofacial pain is relatively common and known to have an adverse effect on quality of life. Previous studies suggest that the current care pathway may be problematic, but it is not well understood which health services patients access and what their experience is. The aim of this study was to explore care pathways and their impact from the perspective of patients. Qualitative interviews were conducted with a maximum variation sample of patients recruited from primary (community based) and secondary (specialist hospital based) care in the United Kingdom. Questions focused on the stages in their pathway and the impact of the care that they had received. Interviews were digitally recorded and transcribed verbatim, and analysis followed principles of the constant comparative method. NVivo 10 was used to help organize and analyze data. Twenty-two patients were interviewed at baseline, and 18 took part in a second interview at 12 mo. Three main themes emerged from the data: the "fluidity of the care pathway," in which patients described moving among health care providers in attempts to have their pain diagnosed and managed, occurring alongside a "failure to progress," where despite multiple appointments, patients described frustration at delays in obtaining a diagnosis and effective treatment for their pain. Throughout their care pathways, patients described the "effects of unmanaged pain," where the longer the pain went unmanaged, the greater its potential to negatively affect their lives. Findings of this study suggest that the current care pathway is inefficient and fails to meet patient needs. Future work needs to focus on working with stakeholder groups to redesign patient-centered care pathways. Knowledge Transfer Statement: Data from qualitative interviews conducted with patients with persistent orofacial pain suggest significant problems with the existing care pathway, consisting of delays to diagnosis, treatment, and referral. Patients describing their struggle to progress through the current care pathway highlighted the difficulties occurring while living with orofacial pain. This study suggests a need for a revised care pathway, which better meets the needs of people with persistent orofacial pain.

Self-management programmes in temporomandibular disorders: results from an international Delphi process.

Self-management (SM) programmes are commonly used for initial treatment of patients with temporomandibular disorders (TMD). The programmes described in the literature, however, vary widely with no consistency in terminology used, components of care or their definitions. The aims of this study were therefore to construct an operationalised definition of self-management appropriate for the treatment of patients with TMD, identify the components of that self-management currently being used and create sufficiently clear and non-overlapping standardised definitions for each of those components. A four-round Delphi process with eleven international experts in the field of TMD was conducted to achieve these aims. In the first round, the participants agreed upon six principal concepts of self-management. In the remaining three rounds, consensus was achieved upon the definition and the six components of self-management. The main components identified and agreed upon by the participants to constitute the core of a SM programme for TMD were as follows: education; jaw exercises; massage; thermal therapy; dietary advice and nutrition; and parafunctional behaviour identification, monitoring and avoidance. This Delphi process has established the principal concepts of self-management, and a standardised definition has been agreed with the following components for use in clinical practice: education; self-exercise; self-massage; thermal therapy; dietary advice and nutrition; and parafunctional behaviour identification, monitoring and avoidance. The consensus-derived concepts, definitions and components of SM offer a starting point for further research to advance the evidence base for, and clinical utility of, TMD SM.

Healthcare Cost and Impact of Persistent Orofacial Pain: The DEEP Study Cohort.

Few data are available on the healthcare costs of those suffering from persistent orofacial pain (POFP). This cohort and cost analysis study examined the direct costs of POFP from the perspective of the healthcare provider (specifically, the UK National Health Service) in 2012 pounds sterling and sought to identify whether dichotomized (high, IIb to IV; low, 0 to IIa) graded chronic pain scale (GCPS) status is predictive of the total cost of healthcare over the last 6 mo. The healthcare utilization data of 198 patients with POFP were collected using a structured interview and a validated "use of services and productivity" questionnaire. Unit costs were used with these utilization data to calculate direct healthcare costs in 3 categories: consultation, medication, and appliances and interventions. Consultation costs were a significant proportion of cumulative healthcare cost (P < 0.001). Dichotomized GCPS status was predictive of increased healthcare cost over the last 6 mo, accounting for an average increase of £366 (95% confidence interval, 135 to 598; P < 0.01) when moving from a low GCPS status to a high GCPS status. Given the predictive capability of dichotomized GCPS status and the success of stratified models of care for other persistent pain conditions, dichotomized GCPS status may offer an opportunity to help determine stratification of care for patients with POFP.

Clinical research in primary dental care.

Many commissioning bodies for research expect that researchers will actively involve the public and patients in their projects. The National Institute for Health Research (NIHR), for example, involves members of the public in reviewing funding applications and making recommendations about research funding. The NIHR's portfolio is currently operating in 97% of NHS Trusts and this now includes research sited in primary dental care. This paper presents some case studies of these and other projects which are designed specifically for patient benefit in dental services in the community. This means there is no necessity to translate the outcomes of such research from a university or hospital base to the general population as the projects are undertaken in dental practices that provide primary dental care to (predominantly) NHS patients. The relevance of the outcomes to dental care is, therefore, likely to be of direct interest and importance to commissioners of healthcare funding in the UK who have a duty to use evidence bases for commissioning decisions.

Twitter: a viable medium for daily pain diaries in chronic orofacial pain?

OBJECTIVE: The aim of this study was to find out if Twitter could be used in a research context as a ubiquitous piece of software to record daily pain. DESIGN: This study was a feasibility study conducted electronically. SETTING: Our research was conducted on Twitter in 2014. SUBJECTS AND METHODS: Participants were recruited via electronic advertising and consented electronically to participate. At three time-points on two non-sequential days participants were asked to record pain, mood and impact ratings on a numerical scale (0-10). Data were extracted manually. RESULTS: Thirty-five individuals consented to participate. Of the 24 participants providing data, 16 provided enough data to be analysed. The majority of participants were female. The mean age was 44.9 (± 0.78) years and the most common diagnosis for participants was Trigeminal Neuralgia. Participants lived in the UK, USA, Canada and New Zealand. An increase in mean pain was reported over consecutive time periods on both days while mood and impact patterns varied between days. CONCLUSION: Our study highlighted that participants can be recruited solely via social media and has ascertained the ease in which data can be collected without technical expertise. To achieve greater participation, differing advertisement strategies should be explored.

DEEP Study: does EQ-5D-5L measure the impacts of persistent oro-facial pain?

The EQ-5D-5L is a generic quality of life (QOL) measure widely used throughout the world, which has the advantage that it allows health-state preferences to be elicited. The aim of this study was to examine whether: a) variation in the standardised reference period for EQ-5D-5L from 'today' to 'the last month' had a minimal clinically meaningful difference; (b) EQ-5D-5L had convergent validity with a multidimensional pain measure in quantifying the impacts of pain. As part of a larger study into the effectiveness and efficiency of care pathways for persistent orofacial pain (POFP) (http://research.ncl.ac.uk/deepstudy), participants with POFP (n = 100) completed two versions of the EQ-5D-5L at the same time with different reference periods ('today' vs. 'last month'). Participants also completed the first section of the West Haven-Yale Multidimensional Pain Inventory (v3) to assess convergent validity. Two-tailed nonparametric inferential statistics, intra-class correlation coefficients (ICC), and within-subject change scores were used to compare the two EQ-5D-5L versions. Convergent validity was assessed using Spearman's rho correlation coefficients. Health-state valuations were significantly different (P < 0.01), and there was good similarity between the two versions' ICC 0.86 (95% CI 0.79-0.91). The within-subject mean change was 0.03 (95% CI 0.01-0.06). For convergent validity, all relationships were significant (P < 0.05) and in the expected directions. EQ-5D-5L demonstrates sufficient convergent validity to be used with POFP, and a change in the standard reference period may be unnecessary if a multidimensional pain measure is also used.

Managing fatigue after cancer treatment: development of RESTORE, a web-based resource to support self-management.

OBJECTIVE: The aim of this study is to co-create an evidence-based and theoretically informed web-based intervention (RESTORE) designed to enhance self-efficacy to live with cancer-related fatigue (CRF) following primary cancer treatment. METHODS: A nine-step process informed the development of the intervention: (1) review of empirical literature; (2) review of existing patient resources; (3) establish theoretical framework; (4) establish design team with expertise in web-based interventions, CRF and people affected by cancer; (5) develop prototype intervention; (6) user testing phase 1; (7) refinement of prototype; (8) user testing phase 2; and (9) develop final intervention. RESULTS: Key stakeholders made a critical contribution at every step of intervention development, and user testing, which involved an iterative process and resulted in the final intervention. The RESTORE intervention has five sessions; sessions 1 and 2 include an introduction to CRF and goal setting. Sessions 3-5 can be tailored to user preference and are designed to cover areas of life where CRF may have an impact: home and work life, personal relationships and emotional adjustment. CONCLUSIONS: It is feasible to systematically 'co-create' an evidence-based and theory-driven web-based self-management intervention to support cancer survivors living with the consequences of cancer and its treatment. This is the first account of the development of a web-based intervention to support self-efficacy to manage CRF. An exploratory trial to test the feasibility and acceptability of RESTORE is now warranted.

Cancer survivors' self-efficacy to self-manage in the year following primary treatment.

PURPOSE: Cancer survivors are increasingly expected to manage the consequences of cancer and its treatment for themselves. There is evidence that self-efficacy is important for successful self-management and that this can be enhanced with support. The purpose of this study was to assess self-efficacy to manage problems in the year following primary treatment. METHODS: This cross-sectional online survey included cancer survivors who had completed their treatment within the past 12 months. Self-efficacy was assessed and variables expected to be associated with self-efficacy were measured using validated scales including quality of life, well-being, illness perceptions, depression and social support. RESULTS: One hundred eighty-two respondents (mean age 50; 81% female) completed the survey. They had been treated for a range of cancers; most commonly breast (45%). Self-efficacy scores varied between individuals and according to the illness-related task to be managed. Respondents were least confident in managing fatigue and most confident in accessing information about their cancer. Individuals most likely to report low self-efficacy were women, those experiencing higher levels of pain and/or depression, lower well-being scores, lower socio-economic status, low levels of social support, or a more negative perception of cancer. CONCLUSIONS: Self-efficacy to self-manage problems faced as a consequence of cancer and its treatment can vary widely in the year following treatment. Fatigue may be particularly difficult to manage. IMPLICATIONS FOR CANCER SURVIVORS: Variations in self-efficacy highlight the importance of assessing specific problems faced and people's confidence to manage them in order to tailor appropriate self-management support.

The effectiveness and cost-effectiveness of acupressure for the control and management of chemotherapy-related acute and delayed nausea: Assessment of Nausea in Chemotherapy Research (ANCHoR), a randomised controlled trial.

BACKGROUND: Chemotherapy-induced nausea and vomiting remain difficult symptoms to manage in clinical practice. As standard antiemetic drugs do not fully eliminate these symptoms, it is important to explore the adjuvant role of non-pharmacological and complementary therapies in antiemetic management approaches. Acupressure is one such treatment showing highly suggestive evidence so far of a positive effect, meriting further investigation. OBJECTIVES: The primary objective was to assess the effectiveness and cost-effectiveness of self-acupressure using wristbands compared with sham acupressure wristbands and standard care alone in the management of chemotherapy-induced nausea. Secondary objectives included assessment of the effectiveness and cost-effectiveness of the wristbands in relation to vomiting and quality of life and exploration of any age, gender and emetogenic risk effects. DESIGN: Randomised three-arm sham-controlled trial (Assessment of Nausea in Chemotherapy Research or ANCHoR) with an economic evaluation. Arms include the wristband arm, the sham wristband arm and the standard care only arm. Randomisation consisted of minimisation with a random element balancing for gender, age (16-24, > 24-50, >50 years) and three levels of emetogenic chemotherapy (low, moderate and high). Qualitative interviews were incorporated to shed more light on the quantitative findings. SETTING: Outpatient chemotherapy clinics in three regions in the UK involving 14 different cancer units/centres. PARTICIPANTS: Chemotherapy-naive cancer patients receiving chemotherapy of low, moderate and high emetogenic risk. INTERVENTION: The intervention was acupressure wristbands pressing the P6 point (anterior surface of the forearm). MAIN OUTCOME MEASURES: The Rhodes Index for Nausea/Vomiting, the Multinational Association of Supportive Care in Cancer (MASCC) Antiemesis Tool and the Functional Assessment of Cancer Therapy - General (FACT-G). At baseline participants completed measures of anxiety/depression, nausea/vomiting expectation and expectations from using the wristbands. RESULTS: In total, 500 patients were randomised in the study arms (166 standard care, 166 sham acupressure and 168 acupressure) and data were available for 361 participants for the primary outcome. The primary outcome analysis (nausea in cycle 1) revealed no statistically significant differences between the three arms, although the median nausea experience in patients using wristbands (both real and sham ones) was somewhat lower than that in the antiemetics only group (median nausea experience scores for the four cycles: standard care arm 1.43, 1.71, 1.14, 1.14; sham acupressure arm 0.57, 0.71, 0.71, 0.43; acupressure arm 1.00, 0.93, 0.43, 0). A gender effect was evident (p= 0.002), with women responding more favourably to the use of sham acupressure wristbands than men (odds ratio 0.35 for men and 2.02 for women in the sham acupressure group; 1.27 for men and 1.17 for women in the acupressure group). This suggests a placebo effect. No significant differences were detected in relation to vomiting outcomes, anxiety and quality of life. Some transient adverse effects were reported, including tightness in the area of the wristbands, feeling uncomfortable when wearing them and minor swelling in the wristband area (n= 6).There were no statistically significant cost differences associated with the use of real acupressure bands (£70.66 for the acupressure group, £111.13 for the standard care group and £161.92 for the sham acupressure group). In total, 26 subjects took part in qualitative interviews. The qualitative data suggested that participants perceived the wristbands (both real and sham) as effective and helpful in managing their nausea during chemotherapy. CONCLUSIONS: There were no statistically significant differences between the three arms in terms of nausea, vomiting and quality of life, although apparent resource use was less in both the real acupressure arm and the sham acupressure arm compared with standard care only; therefore; no clear conclusions can be drawn about the use of acupressure wristbands in the management of chemotherapy-related nausea and vomiting. However, the study provided encouraging evidence in relation to an improved nausea experience and some indications of possible cost savings to warrant further consideration of acupressure both in practice and in further clinical trials. TRIAL REGISTRATION: ISRCTN87604299. SOURCE OF FUNDING: This project was funded by the NIHR Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 17, No. 26. See the HTA programme website for further project information.