Exploring experiences and needs of spousal carers of people with behavioural variant frontotemporal dementia (bvFTD) including those with familial FTD (fFTD): a qualitative study.

INTRODUCTION: Carers of people with frontotemporal dementia (FTD) experience greater challenges than carers of people with other dementias due to the younger age of onset and the challenging presentation of symptoms. The aim of the present study was to explore experiences of spousal carers of people with bvFTD, including those with the familial form of the disease (fFTD). METHOD: Fourteen qualitative interviews were analysed using an inductive approach to Thematic Analysis to understand experiences of spousal carers of people with bvFTD including those with fFTD. RESULTS: Five main themes were identified including: a) The "Constant Battle" - A journey toward an FTD diagnosis, b) Shock, Relief and Fear - Challenges persist post diagnosis, c) The "Life Altering" impact - The loss of the spousal relationship and shifting roles, d) Adapting, Managing Symptoms and Receiving Carer Support, e) Lack of General Knowledge - Barriers to support. CONCLUSIONS: Healthcare professionals should be educated on the initial presentations of FTD, to enable carers and families receive timely diagnosis and appropriate support. Future research should investigate the impact of fFTD on carers and families, to explore positive or meaningful experiences in caring, as well as theory-driven research to identify helpful coping strategies for carers of people with FTD.

A qualitative exploration of women's perspectives and acceptability of including new cancer awareness information in all-clear breast or cervical screening results.

OBJECTIVE: This study explored women's perspectives on the acceptability of including new cancer information with an all-clear breast or cervical screening result letter (using ovarian cancer as a case study). METHODS: In 2016, six focus group discussions were conducted with women aged 25-70 years old, eligible for invitation to the NHS breast or cervical screening programme and resident in England. The focus groups lasted 60-90 min and were held in community venues. Data were analysed using thematic analysis. RESULTS: Thirty-eight women aged 25-67 years old participated in the focus groups. Data analysis yielded six descriptive themes: general cancer awareness, taking advantage of a 'teachable moment', a double-edge sword, barriers to accepting and using new cancer information, motivators for accepting and using new cancer information and wider strategies to increase cancer awareness in women. Women welcomed the inclusion of new cancer information in all-clear screening results but highlighted pertinent lessons to be considered to maximise the usefulness of the approach. CONCLUSION: While women perceived this approach as acceptable, it is pertinent to note the potential of the new cancer information to stimulate anxiety and potentially widen inequalities by excluding non-attenders at screening programmes. Specific complementary and tailored approaches are necessary to mitigate these limitations.

Use of a GP-endorsed non-participant reminder letter to promote uptake of bowel scope screening: A randomised controlled trial in a hard-to-reach population.

Previous research suggests that sending non-participants a reminder letter, 1 year after their initial invitation, can improve coverage for bowel scope screening (BSS), also known as flexible sigmoidoscopy screening. We hypothesised that adding a general practitioner's (GPs) endorsement to the reminder letter could improve coverage even further. We conducted a randomised controlled trial in North West London, UK. Participants were screening-eligible men and women who had not responded to their initial BSS invitation at least 12 months prior to the trial period. Eligible adults were randomised in a 1:1 ratio to receive either a GP-endorsed reminder letter, or a standard reminder letter from June to August 2019. Logistic regression models were used to test the effect of the GP endorsement on attendance at BSS, adjusting for sex, clinical commissioning group, and local area socioeconomic deprivation. In total, 1200 participants were enrolled into the study and randomised to either the control (n = 600) or the intervention (n = 600) group. Those who received the GP-endorsed reminder letter were only slightly more likely to attend BSS than those who received the standard reminder letter (4% vs. 3%); this difference was not statistically significant (Adjusted OR = 1.30; 95% CI: 0.69, 2.43). Adding a GP-endorsement to the annual reminder letter did not have an effect on attendance at BSS. One possible explanation for this is that the endorsement used was not personalised enough. Future research should examine stronger GP-endorsements or other methods to promote uptake.

Using the candidacy framework to understand how doctor-patient interactions influence perceived eligibility to seek help for cancer alarm symptoms: a qualitative interview study.

BACKGROUND: 'Candidacy' is concerned with the way people consider their eligibility for accessing health services. We used the Candidacy Framework to explore how the doctor-patient relationship can influence perceived eligibility to visit their General Practitioner (GP) among people experiencing cancer alarm symptoms. METHODS: We carried out a secondary analysis of qualitative interviews with 29 women and 33 men, aged ≥50 years experiencing cancer alarm symptoms, recruited through primary care. Interviews focused on symptom experience, help-seeking and primary care use. Framework analysis was used to analyse transcripts with a focus on GP-patient interactions. RESULTS: Perceived (im)permeability of services acted as a barrier to help-seeking, due to limited availability of appointments, time-limited communication and difficulties asserting candidacy. There was also a focal role of communication in building a positive doctor-patient relationship, with some participants describing resisting offers of appointments as a result of previous negative GP adjudication. These factors not only influenced the current consultation but had longer-term consequences for future consultation. CONCLUSIONS: Candidacy provides a valuable theoretical framework to understand the interactional factors of the doctor-patient relationship which influence perceived eligibility to seek help for possible cancer alarm symptoms. We have highlighted areas for targeted interventions to improve patient-centred care and improve earlier diagnosis.

Specific support needs and experiences of carers of people with frontotemporal dementia: A systematic review.

INTRODUCTION: Frontotemporal dementia (FTD) is one of the most common types of dementia in persons younger than 65 years of age. Diagnosis is often delayed due to slow, gradual decline and misinterpretation of 'non-typical' dementia symptoms. Informal carers of people with FTD experience greater levels of overall burden than carers of people with other forms of dementia. The aim of this systematic review was to describe the subjective experience of being an informal carer of a person with FTD and to identify the specific needs, coping strategies and helpful support resources of this carer population. METHODS: Four electronic databases were used to search for published literature presenting experiences of carers of people with FTD between January 2003 and July 2019. Search strategy followed PRISMA guidelines. Findings were analysed using framework analysis, employing five stages of analysis to develop a coding index and thematic framework that included key aspects of the carer experience, which were grouped into themes and presented in a narrative format. RESULTS: 1213 articles were identified in total. Twelve studies were included in the final synthesis of the review. Six themes were identified: 'Challenging road to and receipt of diagnosis', 'relationship change and loss', 'challenging experiences in caring', 'positive experiences and resilience', 'coping' and 'support needs'. DISCUSSION: Findings highlight an increased need for carers of people with FTD to receive support during the pre-diagnostic stage, including support to manage symptoms. Further research should explore relationship changes and loss amongst carers to inform approaches for carer support. In conclusion, the lack of knowledge and unique needs of carers highlight the importance of public awareness campaigns and healthcare professional education to support carers with FTD symptom impact.

Persuasion, Adaptation, and Double Identity: Qualitative Study on the Psychological Impact of a Screen-Detected Colorectal Cancer Diagnosis.

The NHS Bowel Cancer Screening Programme (BCSP) is aimed at reducing colorectal cancer (CRC) mortality through early detection within a healthy population. This study explores how 5 people (three females) experience and make sense of their screen-detected diagnosis and the psychological implications of this diagnostic pathway. A biographical narrative interview method was used, and transcripts were analysed using a thematic analysis with a phenomenological lens. Themes specifically relating to posttreatment experience and reflections are reported here: Do it: being living proof, Resisting the threat of recurrence, Rationalising bodily change, and Continuing life-"carrying on normally." Participants described their gratefulness to the BCSP, motivating a strong desire to persuade others to be screened. Furthermore, participants professed a duality of experience categorised by the normalisation of life after diagnosis and treatment and an identification of strength post cancer, as well as a difficulty adjusting to the new changes in life and a contrasting identity of frailty. Understanding both the long- and short-term impacts of a CRC diagnosis through screening is instrumental to the optimisation of support for patients. The results perhaps highlight a particular target for psychological distress reduction, which could reduce the direct and indirect cost of cancer to the patient.

Use of a GP-endorsed 12 months' reminder letter to promote uptake of bowel scope screening: protocol for a randomised controlled trial in a hard-to-reach population.

INTRODUCTION: Flexible sigmoidoscopy (FS) screening is associated with reduced colorectal cancer incidence and mortality when offered as a one-off test to men and women aged 55-64. The test, also referred to as the 'bowel scope screening' (BSS) test, was added to England's national Bowel Cancer Screening Programme in March 2013, where it is offered to men and women aged 55. Since its implementation, uptake of the BSS test has been low, with only 43% of the eligible population attending an appointment. Sending non-participants a reminder at age 56 has been shown to improve uptake by up to nine percentage points at a single centre in London; we hypothesise that adding a general practitioners (GPs) endorsement to the reminder could improve uptake even further. METHODS AND ANALYSIS: This paper describes the protocol for a randomised controlled trial which will examine the effectiveness of adding a GPs endorsement to a reminder for BSS non-participants aged 56. All screening-eligible adults who have not responded to a BSS appointment at London North West Healthcare NHS Trust within 12 months of their initial invitation will be randomised to receive either a GP-endorsed reminder letter or reminder letter without GP endorsement. The primary outcome will be the proportion of individuals screened within each group 8 weeks after the reminder. Statistical comparisons will be made using univariate and multivariate logistic regression, with 'uptake' as the outcome variable, GP reminder group as the exposure and sociodemographic variables as covariates. ETHICS AND DISSEMINATION: The study was approved by the Yorkshire & Humber-Bradford Leeds Research Ethics Committee (16/YH/0298) and the Confidentiality Advisory Group (17/CAG/0162). The results will be disseminated in a peer-reviewed journal in accordance with the Consort statement and will be made available to the public. TRIAL REGISTRATION NUMBER: ISRCTN82867861.