Co-design of an oral health intervention (HABIT) delivered by health visitors for parents of children aged 9-12 months.

BACKGROUND: Dental caries (tooth decay) in children is a national public health problem with impacts on the child, their family and wider society. Toothbrushing should commence from the eruption of the first primary tooth. Health visitors are a key provider of advice for parents in infancy and are ideally placed to support families to adopt optimal oral health habits. HABIT is a co-designed complex behaviour change intervention to support health visitors' oral health conversations with parents during the 9-12-month universal developmental home visit. METHODS: A seven stage co-design process was undertaken: (1) Preparatory meetings with healthcare professionals and collation of examples of good practice, (2) Co-design workshops with parents and health visitors, (3) Resource development and expert/peer review, (4) Development of an intervention protocol for health visitors, (5) Early-phase testing of the resources to explore acceptability, feasibility, impact and mechanism of action, (6) Engagement with wider stakeholders and refinement of the HABIT intervention for wider use, (7) Verification, Review and Reflection of Resources. RESULTS: Following preparatory meetings with stakeholders, interviews and co-design workshops with parents and health visitors, topic areas and messages were developed covering six key themes. The topic areas provided a structure for the oral health conversation and supportive resources in paper-based and digital formats. A five-step protocol was developed with health visitors to guide the oral health conversation during the 9-12 month visit. Following training of health visitors, an early-phase feasibility study was undertaken with preliminary results presented at a dissemination event where feedback for further refinement of the resources and training was gathered. The findings, feedback and verification have led to further refinements to optimise quality, accessibility, fidelity and behaviour change theory. CONCLUSION: The co-design methods ensured the oral health conversation and supporting resources used during the 9-12 month visit incorporated the opinions of families and Health Visitors as well as other key stakeholders throughout the development process. This paper provides key learning and a framework that can be applied to other healthcare settings. The structured pragmatic approach ensured that the intervention was evidence-based, acceptable and feasible for the required context. TRIAL REGISTRATION: ISRCTN55332414, Registration Date 11/11/2021.

Decision Making About Disease-Modifying Treatments for Relapsing-Remitting Multiple Sclerosis: Stated Preferences and Real-World Choices.

BACKGROUND: People with relapsing-remitting multiple sclerosis can benefit from disease-modifying treatments (DMTs). Several DMTs are available that vary in their efficacy, side-effect profile and mode of administration. OBJECTIVE: We aimed to measure the preferences of people with relapsing-remitting multiple sclerosis for DMTs using a discrete choice experiment and to assess which stated preference attributes correlate with the attributes of the DMTs they take in the real world. METHODS: Discrete choice experiment attributes were developed from literature reviews, interviews and focus groups. In a discrete choice experiment, participants were shown two hypothetical DMTs, then chose whether they preferred one of the DMTs or no treatment. A mixed logit model was estimated from responses and individual-level estimates of participants' preferences conditional on their discrete choice experiment choices calculated. Logit models were estimated with stated preferences predicting current real-world on-treatment status, DMT mode of administration and current DMT. RESULTS: A stated intrinsic preference for taking a DMT was correlated with currently taking a DMT, and stated preferences for mode of administration were correlated with the modes of administration of the DMTs participants were currently taking. Stated preferences for treatment effectiveness and adverse effects were not correlated with real-world behaviour. CONCLUSIONS: There was variation in which discrete choice experiment attributes correlated with participants' real-world DMT choices. This may indicate patient preferences for treatment efficacy/risk are not adequately taken account of in prescribing. Treatment guidelines must ensure they take into consideration patients' preferences and improve communication around treatment efficacy/risk.

HABIT (Health visitors delivering Advice in Britain on Infant Toothbrushing): a qualitative exploration of the acceptability of a complex oral health intervention.

BACKGROUND: To explore the acceptability of the oral health intervention, HABIT (Health visitors delivering Advice in Britain on Infant Toothbrushing) to parents with young children aged 9-12 months and health visitors. METHODS: Following the delivery of the universal oral health intervention called HABIT, qualitative semi-structured interviews with parents and focus groups with health visitors were undertaken. Interviews were audio-recorded and transcribed. Health visitors completed self-reported diaries after delivering the HABIT intervention with parents. The qualitative data was analysed using framework analysis (guided by a theoretical framework of acceptability). RESULTS: Seventeen parents were interviewed, and five health visitors and three nursery nurses participated in two focus groups. Parents reported health visitors to be 'trusted' and valued the reassurance provided during the HABIT visit. Health visitors found the HABIT training and resources useful and valued the consistency and increased confidence in undertaking oral health conversations. There were, however, challenges in changing behaviour where families faced competing demands on time and resources. Both health visitors and parents described the importance of the intervention's timing and suggested that multiple visits may be needed to support optimal oral health habits. CONCLUSION: The HABIT intervention was acceptable to parents and health visitors. Health visitors would welcome a further refinement to enhance intervention delivery that specifically achieves a balance between using a guided script and retaining the flexibility to adapt the conversation to suit the needs of individual families. This, in turn, will maximise impact and enable parents of young children to adopt and maintain optimal home-based oral health behaviours for their child.

HABIT: Health visitors delivering Advice in Britain on Infant Toothbrushing - an early-phase feasibility study of a complex oral health intervention.

OBJECTIVES: To conduct an early-phase feasibility study of an oral health intervention, Health visitors delivering Advice on Britain on Infant Toothbrushing (HABIT), delivered by Health Visitors to parents of children aged 9-12 months old. DESIGN: A mixed-methods, early-phase, non-controlled, feasibility study. PARTICIPANTS: Recruitment consisted of Group A-HABIT-trained Health Visitors (n=11) and Group B-parents of children aged 9-12 months old about to receive their universal health check (n=35). SETTING: Bradford, West Yorkshire, UK. INTERVENTION: A multidisciplinary team co-developed digital and paper-based training resources with health visitors and parents of young children. The intervention comprised of two components: (A) training for health visitors to deliver the HABIT intervention and (B) HABIT resources for parents, including a website, videos, toothbrushing demonstration and a paper-based leaflet with an oral health action plan. PRIMARY AND SECONDARY OUTCOME MEASURES: Recruitment, retention and intervention delivery were analysed as key process outcomes for Groups A and B. Group B demographics, self-reported toothbrushing behaviours, dietary habits and three objective measures of toothbrushing including plaque scores were collected at baseline, 2 weeks and 3 months post intervention. RESULTS: HABIT intervention delivery was feasible. Although the intended sample size was recruited (Group A=11 and Group B=35) it was more challenging than anticipated. Retention of Group B participants to final data collection was satisfactory (n=26). Total compliance with toothbrushing guidelines at baseline was low (30%), but significantly improved and was maintained 3 months after the intervention (68%). Plaque scores improved post intervention and participants found video recording of toothbrushing acceptable. Dietary habits remained largely unchanged. CONCLUSION: This feasibility study has demonstrated that HABIT is an appropriate oral health intervention. Adaptions to the study design are recommended to maximise recruitment and data collection in a definitive study. These quantitative findings have demonstrated an early signal of impact for improved oral health behaviours for young children at high risk of decay. TRIAL REGISTRATION NUMBER: ISRCTN55332414.

Organizational Barriers to Oral Health Conversations Between Health Visitors and Parents of Children Aged 9-12 Months Old.

Background: Dental caries is the most prevalent preventable childhood disease and a major public health priority. Local authorities in England have a statutory responsibility to improve child health, including oral health, through the "Healthy Child Programme." The "Healthy Child Programme," which includes the provision of oral health advice is delivered by health visitors to parents of young children. To date, research has mainly concentrated on individual interactions between health visitors and parents, with less attention given to the broader context in which these oral health conversations between health visitor and parents take place. Objective: Our study explored the organizational factors that obstruct health visitors from engaging in meaningful conversations with parents about young children's oral health. Methods: Qualitative interviews and focus groups were held with health visiting teams (n = 18) conducting home visits with parents of 9-12-month olds in a deprived, urban area in England. Results: The study revealed the wide variation in what and how oral health advice is delivered to parents at home visits. Several barriers were identified and grouped into four key themes: (1) Priority of topics discussed in the home visits; (2) Finance cuts and limited resources; (3) Oral health knowledge and skills; and (4) Collaborative working with other professionals. It was evident that organizational factors in current public health policy and service provision play an important role in shaping oral health practices and opportunities for behavior change. Conclusion: Organizational practices and procedures play an important role in creating interaction patterns between health visiting teams and parents of young children. They often limit effective engagement with and positive change in oral health. For future oral health interventions to be effective, awareness of these barriers is essential alongside them being founded on evidence-based advice and underpinned by appropriate theory.

Out on the streets - Crisis, opportunity and disabled people in the era of Covid-19: Reflections from the UK.

Governments have responded to the Covid-19 crisis through various measures designed to reduce transmission and protect people judged to be at heightened risk. This paper explores the implications of such measures in the UK for disabled people, with a particular focus on measures designed to reduce and reshape the use of streets and public space. We divide UK measures into two broad categories. First, there are measures designed to reduce the use of streets and public spaces - e.g., rules requiring people to stay at home except in tightly prescribed circumstances and measures providing specific support (including food delivery and priority online shopping) for people designated as clinically extremely 'vulnerable'. Second, there are measures designed to control the behaviour of people using streets and public space - e.g., rules on physical distancing and the use of face coverings. We explore the disability-related concerns associated with these types of measure. We also highlight the opportunities this crisis presents for embedding accessibility and inclusion more firmly into the fabric of our streets and call for renewed resistance to policies and practices shaped by ableist assumptions and attitudes.

Les gouvernements réagissent à la crise de Covid-19 en prenant diverses mesures pour réduire sa transmission et pour protéger les personnes jugées à haut risque. Cet article explore les implications de ces mesures au Royaume-Uni pour les personnes handicapées, en se concentrant sur celles conçues pour réduire et remodeler l'utilisation des rues et des espaces publics. Nous divisons les mesures en deux catégories. Premièrement, il existe des mesures conçues pour réduire l'utilisation des rues et espaces publics ­ par exemple, les règles obligeant les personnes à rester chez eux, sauf dans les circonstances strictement prescrites et les mesures qui nécessitent un soutien spécifique (y compris la livraison de nourriture et les achats en ligne prioritaires) pour les personnes désignées comme « vulnérables ¼. Deuxièmement, il existe des mesures conçues pour contrôler le comportement des personnes qui utilisent ces espaces ­ par exemple, les règles sur la distance physique et l'utilisation des masques. Nous explorons les préoccupations liées au handicap associées à ces types de mesures. Nous soulignons également les opportunités présentées par cette crise pour intégrer plus fermement l'accessibilité et l'inclusion dans la trame sociale de nos rues et faisons appel à une résistance renouvelée aux politiques façonnées par les attitudes capacitistes.

The Impact of Reproductive Issues on Preferences of Women with Relapsing Multiple Sclerosis for Disease-Modifying Treatments.

BACKGROUND: Relapsing-remitting multiple sclerosis (RRMS) is an incurable disease characterised by relapses (periods of function loss) followed by full or partial recovery, and potential permanent disability over time. Many disease-modifying treatments (DMTs) exist that help reduce relapses and slow disease progression. Most are contraindicated during conception/pregnancy and some require a discontinuation period before trying to conceive. Although around three-quarters of people with RRMS are women, there is limited knowledge about how reproductive issues impact DMT preference. OBJECTIVE: The aim of this study was to measure the preferences for DMTs of women with RRMS who are considering pregnancy. DESIGN: An online discrete choice experiment (DCE). METHODS: Participants chose between two hypothetical DMTs characterised by a set of attributes, then indicated if they preferred their choice to no treatment. Attributes were identified from interviews and focus groups with people with RRMS and MS professionals, as well as literature reviews, and included the probability of problems with pregnancy, discontinuation of DMTs, and breastfeeding safety. In each DCE task, participants were asked to imagine making decisions in three scenarios: now; when trying to conceive; and when pregnant. ANALYSIS: Two mixed logit models were estimated, one to assess the statistical significance between scenarios and one in maximum acceptable risk space to allow comparison of the magnitudes of parameters between scenarios. SAMPLE: Women with RRMS who were considering having a child in the future, recruited from a UK MS patient register. RESULTS: Sixty respondents completed the survey. Participants preferred no treatment in 12.6% of choices in the 'now' scenario, rising significantly to 37.6% in the 'trying to conceive' scenario and 60.3% in the 'pregnant' scenario (Kruskal-Wallis p < 0.001). This pattern corresponds with results from models that included a no-treatment alternative-specific constant (ASC) capturing differences between taking and not taking a DMT not specified by the attributes. The ASC was lower in the trying to conceive scenario than in the now scenario, and lower still in the pregnant scenario, indicating an intrinsic preference for no treatment. Participants also placed relatively less preference on reducing relapses and avoiding disease progression in the trying to conceive and pregnant scenarios compared with a lower risk of problems with pregnancy. In the trying to conceive scenario, participants' preference for treatments with shorter washout periods increased. CONCLUSION: Women with RRMS considering having a child prefer DMTs with more favourable reproduction-related attributes, even when not trying to conceive. Reproductive issues also influenced preferences for DMT attributes not directly related to pregnancy, with preferences dependent on the life circumstances in which choices were made. The design of the DCE highlights the benefits of considering the scenario in which participants make choices, as they may change over time.

Impact of communication on first treatment decisions in people with relapsing-remitting multiple sclerosis.

OBJECTIVE: Disease-Modifying Treatments (DMTs) have contributed to a new clinical landscape for people with relapsing-remitting multiple sclerosis (pwRRMS). A challenge for services is how to support DMT decisions with changing clinical evidence, and differing treatment goals. This article investigates how pwRRMS weigh up the pros and cons of DMTs by examining how communication at the point of diagnosis is related to DMT decisions. METHODS: 30 semi-structured interviews with pwRRMS in England were conducted using a theoretical purposive sampling strategy and analysed using the thematic approach to answer: How does communication about RRMS during diagnosis influence decisions about when and which DMT to choose? RESULTS: Three meta-themes were identified: a) communication context; b) delayed communication and hope for people with "non-active" RRMS at diagnosis; c) people with "active" RRMS at diagnosis: Conflated, generic, selective and simplified information CONCLUSION: At the time of diagnosis, patient-physician interactions are characterised by emotions and information complexity. Clinical, social and psychological DMT filtering mechanisms are activated during first decisions. Personalised evidence is needed to make informed decisions. PRACTICE IMPLICATIONS: Patient decision aids should consider first and consecutive decisions and should not encourage a false sense of large choices that could add to decision anxiety.

Understanding treatment decisions from the perspective of people with relapsing remitting multiple Sclerosis: A critical interpretive synthesis.

BACKGROUND: Multiple Sclerosis (MS) is a chronic inflammatory demyelinating disorder of the central nervous system that mainly affects young adults. While there is no cure for MS, disease modifying treatments (DMTs) reduce the relapse rate and partial accrual of disability. More effective DMTs may have higher risks including life-threatening infections or secondary autoimmunity. The complexity and novelty of available treatments cause challenges for clinicians when prescribing treatments and for people with MS (PwMS) when deciding what trade-offs they are willing and ready to make. OBJECTIVE: To explore the experience of people with relapsing remitting MS (PwRRMS) and their perspectives in choosing treatments. METHODS: Critical interpretive synthesis was employed to review and synthesis the published literature. Eighty-three publications were selected in a multi-step systematic process. RESULTS: Findings are presented in four interrelated areas: the influence of the clinical evidence-base in decision making; the meaning of DMT efficacy for PwRRMS; the influence of models of decision-making and information acquisition practices in PwRRMS; and the importance of psychosocial dimensions in DMT decision making. Synthesis of the findings revealed that alongside medical and individual reasoning, contextual circumstances play an important role in making treatment decisions. CONCLUSION: This review identifies and explains the importance of diverse contextual circumstances (clinical, social, psychological) that are important for PwRRMS when making treatment decisions. The findings demonstrate the importance of eliciting, understanding and addressing such contextual factors.

A Systematic Review of Discrete-Choice Experiments and Conjoint Analysis Studies in People with Multiple Sclerosis.

BACKGROUND: Multiple sclerosis (MS) is a chronic disabling, inflammatory, and degenerative disease of the central nervous system that, in most cases, requires long-term disease-modifying treatment (DMT). The drugs used vary in efficacy and adverse effect profiles. Several studies have used attribute-based stated-preference methods, primarily to investigate patient preferences for initiating or escalating DMT. OBJECTIVES: To conduct a systematic review of attribute-based stated-preference studies in people with MS to identify common methods employed and to assess study quality, with reference to the specific challenges of this disease area. METHODS: We conducted a systematic search for studies related to attribute-based stated-preference and MS in multiple databases, including Cochrane and MEDLINE. Studies were included if they were published in a peer-reviewed journal, were on the topic of MS, and used a survey methodology that measured stated preferences for attributes of a whole. Analysis was conducted using narrative synthesis and summary statistics. Study quality was judged against the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) conjoint analysis checklist. RESULTS: We identified 16 relevant articles reporting 17 separate studies, all but one focusing on DMTs. Most studies were discrete-choice experiments. Study quality was generally high, but we recommend the following: (1) that consideration of sample sizes be improved, (2) that survey design choices be justified and documented, (3) that qualitative approaches for attribute and level selection be incorporated to better involve patients, and (4) that reporting of experimental practice be improved. The effects of DMTs on reproduction and the impact of how risk and uncertainty are presented were identified as neglected research topics. The ISPOR conjoint analysis checklist was found to be unsuitable for the assessment of study quality. CONCLUSION: Attribute-based stated preference is a useful method with which to examine the preferences of people with MS in their choice of DMT. However, further research embracing the methodological recommendations identified, particularly greater use of qualitative methods in attribute development, is needed.

HABIT-an early phase study to explore an oral health intervention delivered by health visitors to parents with young children aged 9-12 months: study protocol.

BACKGROUND: Parental supervised brushing (PSB) when initiated in infancy can lead to long-term protective home-based oral health habits thereby reducing the risk of dental caries. However, PSB is a complex behaviour with many barriers reported by parents hindering its effective implementation. Within the UK, oral health advice is delivered universally to parents by health visitors and their wider teams when children are aged between 9 and 12 months. Nevertheless, there is no standardised intervention or training upon which health visitors can base this advice, and they often lack the specialised knowledge needed to help parents overcome barriers to performing PSB and limiting sugary foods and drinks.Working with health visitors and parents of children aged 9-24 months, we have co-designed oral health training and resources (Health Visitors delivering Advice in Britain on Infant Toothbrushing (HABIT) intervention) to be used by health visitors and their wider teams when providing parents of children aged 9-12 months with oral health advice.The aim of the study is to explore the acceptability of the HABIT intervention to parents and health visitors, to examine the mechanism of action and develop suitable objective measures of PSB. METHODS/DESIGN: Six health visitors working in a deprived city in the UK will be provided with training on how to use the HABIT intervention. Health visitors will then each deliver the intervention to five parents of children aged 9-12 months. The research team will collect measures of PSB and dietary behaviours before and at 2 weeks and 3 months after the HABIT intervention. Acceptability of the HABIT intervention to health visitors will be explored through semi-structured diaries completed after each visit and a focus group discussion after delivery to all parents. Acceptability of the HABIT intervention and mechanism of action will be explored briefly during each home visit with parents and in greater details in 20-25 qualitative interviews after the completion of data collection. The utility of three objective measures of PSB will be compared with each other and with parental-self reports. DISCUSSION: This study will provide essential information to inform the design of a definitive cluster randomised controlled trial. TRIAL REGISTRATION: There is no database for early phase studies such as ours.