Developing guidelines for the translation and cultural adaptation of the Montreal Cognitive Assessment (MoCA): A scoping review and qualitative synthesis

BACKGROUND: Ethnic minorities in countries such as the UK are at increased risk of dementia or minor cognitive impairment. Despite this, cognitive tests used to provide a timely diagnosis for these conditions demonstrate performance bias in these groups, because of cultural context. They require adaptation that accounts for language and culture beyond translation. The Montreal Cognitive Assessment (MoCA) is one such test that has been adapted for multiple cultures. AIMS: We followed previously used methodology for culturally adapting cognitive tests to develop guidelines for translating and culturally adapting the MoCA. METHOD: We conducted a scoping review of publications on different versions of the MoCA. We extracted their translation and cultural adaptation procedures. We also distributed questionnaires to adaptors of the MoCA for data on the procedures they undertook to culturally adapt their respective versions. RESULTS: Our scoping review found 52 publications and highlighted seven steps for translating the MoCA. We received 17 responses from adaptors on their cultural adaptation procedures, with rationale justifying them. We combined data from the scoping review and the adaptors’ feedback to form the guidelines that state how each question of the MoCA has been previously adapted for different cultural contexts and the reasoning behind it. CONCLUSIONS: This paper details our development of cultural adaptation guidelines for the MoCA that future adaptors can use to adapt the MoCA for their own languages or cultures. It also replicates methods previously used and demonstrates how these methods can be used for the cultural adaptation of other cognitive tests

Developing and implementing guidelines on culturally adapting the Addenbrooke’s cognitive examination version III (ACE-III): a qualitative illustration

From Springer Nature via Jisc Publications RouterHistory: received 2019-08-13, accepted 2020-09-24, registration 2020-09-24, online 2020-10-06, pub-electronic 2020-10-06, collection 2020-12Publication status: PublishedAbstract: Background: Cognitive tests currently used in healthcare and research settings do not account for bias in performance that arises due to cultural context. At present there are no universally accepted steps or minimum criteria for culturally adapting cognitive tests. We propose a methodology for developing specific guidelines to culturally adapt a specific cognitive test and used this to develop guidelines for the ACE-III. We then demonstrated their implementation by using them to produce an ACE-III Urdu for a British South Asian population. Methods: This was a several stage qualitative study. We combined information from our systematic review on the translation and cultural adaptation of the ACE-III with feedback from previous ACE-III adaptors. This identified steps for cultural adaptation. We formatted these into question-by-question guidelines. These guidelines, along with feedback from focus groups with potential users were used to develop ACE-III Urdu questions. Clinical experts reviewed these questions to finalise an ACE-III Urdu. Results: Our systematic review found 32 adaptations and we received feedback from seven adaptors to develop the guidelines. With these guidelines and two focus groups with 12 participants a sample ACE-III Urdu was developed. A consensus meeting of two psychiatrists with a South Asian background and familiarity with cognitive tests and cultural adaptation finalised the ACE-III Urdu. Conclusions: We developed a set of guidelines for culturally adapting the ACE-III that can be used by future adaptors for their own language or cultural context. We demonstrated how guidelines on cultural adaptation can be developed for any cognitive test and how they can be used to adapt it

What can we learn from trial decliners about improving recruitment? Qualitative study

Background Trials increasingly experience problems in recruiting participants. Understanding the causes of poor recruitment is critical to developing solutions. We interviewed people who had declined a trial of an innovative psychological therapy for depression (REFRAMED) about their response to the trial invitation, in order to understand their decision and identify ways to improve recruitment. Methods Of 214 people who declined the trial, 35 (16 %) gave permission to be contacted about a qualitative study to explore their decision. Analysis of transcripts of semi-structured interviews was informed by grounded theory. Results We interviewed 20 informants: 14 women and six men, aged 18 to 77 years. Many interviewees had prior experience of research participation and positive views of the trial. Interviewees’ decision making resembled a four-stage sequential process; in each stage they either decided not to participate in the trial or progressed to the next stage. In stage 1, interviewees assessed the invitation in the context of their experiences and attitudes; we term those who opted out at this stage ‘prior decliners’ as they had an established position of declining trials. In stage 2, interviewees assessed their own eligibility; those who judged themselves ineligible and opted out at this stage are termed ‘self-excluders’. In stage 3, interviewees assessed their need for the trial therapy and potential to benefit; we term those who decided they did not need the trial therapy and opted out at this stage ‘treatment decliners’. In stage 4, interviewees deliberated the benefits and costs of trial participation; those who opted out after judging that disadvantages outweighed advantages are termed ‘trial decliners’. Across all stages, most individuals declined because they judged themselves ineligible or not in need of the trial therapy. While ‘prior decliners’ are unlikely to respond to any trial recruitment initiative, the factors leading others to decline are amenable to amelioration as they do not arise from a rejection of trials or a personal stance. Conclusions To improve recruitment in similar trials, the most successful interventions are likely to address patients’ assessments of their eligibility and their potential to benefit from the trial treatment, rather than reducing trial burden

Interventions for common perinatal mental disorders in women in low- and middle-income countries: a systematic review and meta-analysis

Objective: To assess the effectiveness of interventions to improve the mental health of women in the perinatal period and to evaluate any effect on the health, growth and development of their offspring, in low- and middle-income (LAMI) countries. Methods: Seven electronic bibliographic databases were systematically searched for papers published up to May 2012 describing controlled trials of interventions designed to improve mental health outcomes in women who were pregnant or had recently given birth. The main outcomes of interest were rates of common perinatal mental disorders (CPMDs), primarily postpartum depression or anxiety; measures of the quality of the mother-infant relationship; and measures of infant or child health, growth and cognitive development. Meta-analysis was conducted to obtain a summary measure of the clinical effectiveness of the interventions. Findings: Thirteen trials representing 20 092 participants were identified. In all studies, supervised, non-specialist health and community workers delivered the interventions, which proved more beneficial than routine care for both mothers and children. The pooled effect size for maternal depression was -0.38 (95% confidence interval: -0.56 to -0.21; I (2) = 79.9%). Where assessed, benefits to the child included improved mother-infant interaction, better cognitive development and growth, reduced diarrhoeal episodes and increased immunization rates. Conclusion: In LAMI countries, the burden of CPMDs can be reduced through mental health interventions delivered by supervised non-specialists. Such interventions benefit both women and their children, but further studies are needed to understand how they can be scaled up in the highly diverse settings that exist in LAMI countries

Prevention of: self harm in British South Asian women: study protocol of an exploratory RCT of culturally adapted manual assisted Problem Solving Training (C- MAP)

<p>Abstract</p> <p>Background</p> <p>Suicide is a major public health problem worldwide. In the UK suicide is the second most common cause of death in people aged 15-24 years. Self harm is one of the commonest reasons for medical admission in the UK. In the year following a suicide attempt the risk of a repeat attempt or death by suicide may be up to 100 times greater than in people who have never attempted suicide.</p> <p>Research evidence shows increased risk of suicide and attempted suicide among British South Asian women. There are concerns about the current service provision and its appropriateness for this community due to the low numbers that get involved with the services. Both problem solving and interpersonal forms of psychotherapy are beneficial in the treatment of patients who self harm and could potentially be helpful in this ethnic group.</p> <p>The paper describes the trial protocol of adapting and evaluating a culturally appropriate psychological treatment for the adult British South Asian women who self harm.</p> <p>Methods</p> <p>We plan to test a culturally adapted Problem Solving Therapy (C- MAP) in British South Asian women who self harm. Eight sessions of problem solving each lasting approximately 50 minutes will be delivered over 3 months. The intervention will be assessed using a prospective rater blind randomized controlled design comparing with treatment as usual (TAU). Outcome assessments will be carried out at 3 and 6 months. A sub group of the participants will be invited for qualitative interviews.</p> <p>Discussion</p> <p>This study will test the feasibility and acceptability of the C- MAP in British South Asian women. We will be informed on whether a culturally adapted brief psychological intervention compared with treatment as usual for self-harm results in decreased hopelessness and suicidal ideation. This will also enable us to collect necessary information on recruitment, effect size, the optimal delivery method and acceptability of the intervention in preparation for a definitive RCT using repetition of self harm and cost effectiveness as primary outcome measures.</p> <p>Trial Registration</p> <p>Current Controlled Trials 08/H1013/6</p

Accessing primary health care: A meta-ethnography of the experiences of British South Asian patients with diabetes, coronary heart disease or a mental health problem

Objectives: To develop an explanatory framework of the problems accessing primary care health services experienced by British South Asian patients with a long-term condition or mental health problem. Methods: This study used meta-ethnographic methods. Published qualitative studies were identified from a structured search of six databases and themes synthesized across studies to develop a new explanatory framework. Results: Initial searches identified 951 potentially relevant records from which a total of 27 articles were identified that met inclusion and exclusion criteria. Twelve of these articles were chosen on the basis of their quality and relevance. These 12 articles described themes relating to the cultural, spatial and temporal dimensions of patient experiences of accessing and using health care. Our interpretive synthesis showed that access to primary care among British South Asians with diabetes, coronary heart disease and psychological health problems is co-constructed and negotiated over time and space along the key domains of the candidacy model of access: from help-seeking to interactions at the interface to following treatment advice. In the case of each condition, British South Asians’ claims to candidacy were constrained where their individual as well as broader social and cultural characteristics lacked fit with professionals’ ways of working and cultural typifications. Conclusion: Interventions that positively affect professionals’ capacity to support patient claims to candidacy are likely to help support British South Asians overcome a broad range of barriers to care for physical and mental health problems. </jats:p

The impact of advertising patient and public involvement on trial recruitment: embedded cluster randomised recruitment trial

BACKGROUND Patient and public involvement in research (PPIR) may improve trial recruitment rates, but it is unclear how. Where trials use PPIR to improve design and conduct, many do not communicate that clearly to potential participants. Better communication of PPIR might encourage patient enrolment, as trials may be perceived as more socially valid, relevant, and trustworthy. We aimed to evaluate the impact on recruitment of directly advertising PPIR to potential trial participants. METHODS A cluster trial, embedded within a host trial ('EQUIP') recruiting service users diagnosed with severe mental illness. The intervention was informed by a systematic review, a qualitative study, social comparison theory and a stakeholder workshop including service users and carers. Adopting Participatory Design approaches, we co-designed the recruitment intervention with PPIR partners using a leaflet to advertise the PPIR in EQUIP and sent potential participants invitations with the leaflet (intervention group) or not (control group). Primary outcome was the proportion of patients enrolled in EQUIP. Secondary outcomes included the proportions of patients who positively responded to the trial invitation. RESULTS 34 community mental health teams were randomised and 8182 service users invited. For the primary outcome, 4% of patients in the PPIR group were enrolled versus 5.3% of the control group. The intervention was ineffective for improving recruitment rates (adjusted OR= 0.75, 95% CI= 0.53 to 1.07, p=0.113). For the secondary outcome of positive response, the intervention was not effective, with 7.3% of potential participants in the intervention group responding positively versus 7.9% of the control group (adjusted OR=0.74, 95% CI= 0.53 to 1.04, p=0.082). We did not find a positive impact of directly advertising PPIR on any other outcomes. CONCLUSION To our knowledge, this is the largest ever embedded trial to evaluate a recruitment or PPIR intervention. Advertising PPIR did not improve enrolment rates, or any other outcome. It is possible that rather than advertising PPIR being the means to improve recruitment, PPIR may have an alternative impact on trials by making them more attractive, acceptable and patient-centred. We discuss potential reasons for our findings and implications for recruitment practice and research

Study protocol for the Multiple Symptoms Study 3: a pragmatic, randomised controlled trial of a clinic for patients with persistent (medically unexplained) physical symptoms

Introduction: Persistent physical symptoms (which cannot be adequately attributed to physical disease) affect around 1 million people (2% of adults) in the UK. They affect patients’ quality of life and account for at least one third of referrals from General Practitioners (GPs) to specialists. These referrals give patients little benefit but have a real cost to health services time and diagnostic resources. The symptoms clinic has been designed to help people make sense of persistent physical symptoms (especially if medical tests have been negative) and to reduce the impact of symptoms on daily life. Methods and analysis: This pragmatic, multicentre, randomised controlled trial will assess the clinical and cost-effectiveness of the symptoms clinic intervention plus usual care compared with usual care alone. Patients were identified through GP searches and mail-outs and recruited by the central research team. 354 participants were recruited and individually randomised (1:1). The primary outcome is the self-reported Physical Health Questionnaire-15 at 52 weeks postrandomisation. Secondary outcome measures include the EuroQol 5 dimension 5 level and healthcare resource use. Outcome measures will also be collected at 13 and 26 weeks postrandomisation. A process evaluation will be conducted including consultation content analysis and interviews with participants and key stakeholders. Ethics and dissemination: Ethics approval has been obtained via Greater Manchester Central Research Ethics Committee (Reference 18/NW/0422). The results of the trial will be submitted for publication in peer-reviewed journals, presented at relevant conferences and disseminated to trial participants and patient interest groups. Trial registration number: ISRCTN57050216