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Purpose: The purpose of this paper is to describe the impacts of cancer treatment on sexual health in a sample of people who had been treated for mixed types of cancer; to describe discussions they had with professionals about sexual health that occurred during cancer care; and to consider the extent to which these discussions were sufficient to enable participants to give informed consent for the sexual side effect of cancer treatment., Method: A cross-sectional, online survey using a convenience sample of people with cancer was recruited via UK cancer charities. Eligibility criteria included having received treatment and follow-up care for any type of cancer in the UK during the previous 10 years. Univariate analysis was conducted using SPSS., Results: 136 people with cancer participated in this survey. The majority of participants reported having experienced a worsening of their sexual lives, which bothered them. Whilst 33.6% of the sample (n = 125) reported having discussed sexual health during their cancer care, only 5.4% reported that a healthcare professional initiated a pre-treatment discussion about the sexual side effects of cancer treatment., Conclusions: These results suggest that the proportion of participants who were provided with sufficient information to give informed consent for the sexual side effects of cancer treatment was very low. This indicates that healthcare professionals may require specific advice on how to include this topic during the informed consent process., Competing Interests: Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Objective: To explore the experiences, information and support needs of parents/caregivers of children with cancer and how these changed as the COVID-19 pandemic evolved., Design: Online surveys containing closed and free-text questions on experiences, information and support needs were completed at four time points (between April 2020 and October 2021) during the COVID-19 pandemic. Descriptive statistics of closed items and content analysis of qualitative data were conducted., Setting: Online., Participants: Parents/caregivers of children with cancer., Results: 335 parents/caregivers completed the survey over four time points. Findings revealed that parents'/caregivers' worry about the virus and vigilance about their child's virus symptoms decreased over time. Parents reporting the need for support on how to reduce their worries and/or family members during the virus outbreak were low, however parents reported a slight increase in need for support at T3 when schools reopened. Qualitative findings reported the following themes: (1) Psychological well-being of parents/caregivers, (2) Changing perceptions of risks/priorities, (3) Adjusting to COVID-19: Living with continued caution, (4) Healthcare and treatment provision, (5) Information seeking and needs during COVID-19., Conclusions: The COVID-19 pandemic disrupted people's lives and routines in relation to access to support, finances, education and social lives, leading to psychological distress. Parents highlighted the need for timely, up-to-date and personalised information in relation to COVID-19 and their child with cancer. Further consideration of the development of technology-based health solutions may provide an efficient and safe way to connect with and support parent/caregivers., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2023. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: During the initial COVID-19 pandemic, young United Kingdom (UK) kidney patients underwent lockdown and those with increased vulnerabilities socially isolated or 'shielded' at home. The experiences, information needs, decision-making and support needs of children and young adult (CYA) patients or their parents during this period is not well known., Methods: A UK-wide online survey co-produced with patients was conducted in May 2020 amongst CYA aged 12-30, or parents of children aged < 18 years with any long-term kidney condition. Participants answered qualitative open text alongside quantitative closed questions. Thematic content analysis using a three-stage coding process was conducted., Results: One-hundred and eighteen CYA (median age 21) and 197 parents of children (median age 10) responded. Predominant concerns from CYA were heightened vigilance about viral (68%) and kidney symptoms (77%) and detrimental impact on education or work opportunities (70%). Parents feared the virus more than CYA (71% vs. 40%), and had concerns that their child would catch the virus from them (64%) and would have an adverse impact on other children at home (65%). CYA thematic analysis revealed strong belief of becoming seriously ill if they contracted COVID-19; lost educational opportunities, socialisation and career development; and frustration with the public for not following social distancing rules. Positive outcomes included improved family relationships and community cohesion. Only a minority (14-21% CYA and 20-31% parents, merged questions) desired more support. Subgroup analysis identified greater negative psychological impact in the shielded group., Conclusions: This survey demonstrates substantial concern and need for accurate tailored advice for CYA based on individualised risks to improve shared decision making., (© 2021. Crown.)

Aim: To cross-culturally adapt and determine the preliminary psychometric properties of the English version of the LwLTC Scale in people living with long-term conditions in the UK., Design: Cross-cultural adaptation and cross-sectional study., Methods: Forty-nine patients with five long-term conditions were included in the pilot study. Patients completed the English version of the LwLTC Scale and a bespoke questionnaire related to the scale. Feasibility/acceptability, internal consistency and construct validity were analysed., Results: 59.2% of participants were female, with an average age of 65.9 (SD = 12.30). Cronbach's alpha coefficient ranged between 0.50 and 0.84. Content validity showed that the English version of the LwLTC Scale was useful even negative items were identified., Conclusion: These preliminary psychometric properties are satisfactory and promising. Further psychometric analyses are needed to verify them in a larger and more representative sample size during the main validation study, which is now in process., (© 2021 The Authors. Nursing Open published by John Wiley & Sons Ltd.)

Background: Children with cancer were designated as clinically extremely vulnerable if they were to contract SARS-CoV-2 due to immune suppression in the early phase of the COVID-19 pandemic. Our aim was to explore experiences, information and support needs, and decision making of parents with a child with cancer in response to this phase in the United Kingdom., Methods: Parents of a child with cancer completed a survey at a time when the UK moved into a period of 'lockdown'. An online survey was developed by the research team to capture parents' experiences, information and support needs, and decision making, using closed statements and open text boxes. Descriptive quantitative analyses and qualitative thematic content analysis were undertaken., Findings: One hundred seventy-one parents/caregivers completed the survey. Eighty-five percent were worried about the virus and they were vigilant about the virus (92%) or cancer symptoms (93.4%). For two-thirds (69.6%), hospital was no longer considered a safe place. Eight overarching themes were identified related to the virus: (a) risk of infection; (b) information, guidance and advice; (c) health care provision; (d) fears and anxieties; or related to lockdown/isolation: (e) psychological and social impact; (f) keeping safe under lockdown; (g) provisions and dependence; and (h) employment and income., Conclusions: This is the first study, to the best of our knowledge, to report experiences of parents of a child with cancer during the SARS-CoV-2/COVID-19 pandemic. The majority of parents were worried about SARS-CoV-2 and transmitting the virus to their child. Hospital was no longer perceived to be a safe place, and parents were worried about suboptimal cancer care. Parents described fear and anxiety and the psychological, social and economic impact of isolation., (© 2020 Wiley Periodicals LLC.)

Most clinical contacts with chronic obstructive pulmonary disease (COPD) patients take place in primary care, presenting opportunity for proactive clinical management. Electronic health records could be used to risk stratify diagnosed patients in this setting, but may be limited by poor data quality or completeness. We developed a risk stratification database algorithm using the DOSE index (Dyspnoea, Obstruction, Smoking and Exacerbation) with routinely collected primary care data, aiming to calculate up to three repeated risk scores per patient over five years, each separated by at least one year. Among 10,393 patients with diagnosed COPD, sufficient primary care data were present to calculate at least one risk score for 77.4%, and the maximum of three risk scores for 50.6%. Linked secondary care data revealed primary care under-recording of hospital exacerbations, which translated to a slight, non-significant cohort average risk score reduction, and an understated risk group allocation for less than 1% of patients. Algorithmic calculation of the DOSE index is possible using primary care data, and appears robust to the absence of linked secondary care data, if unavailable. The DOSE index appears a simple and practical means of incorporating risk stratification into the routine primary care of COPD patients, but further research is needed to evaluate its clinical utility in this setting. Although secondary analysis of routinely collected primary care data could benefit clinicians, patients and the health system, standardised data collection and improved data quality and completeness are also needed.

Introduction: Loneliness and social isolation have been identified as significant public health concerns, but improving relationships and increasing social participation may improve health outcomes and quality of life. The aim of the Project About Loneliness and Social networks (PALS) study is to assess the effectiveness and cost-effectiveness of a guided social network intervention within a community setting among individuals experiencing loneliness and isolation and to understand implementation of Generating Engagement in Network Involvement (Genie) in the context of different organisations., Methods and Analysis: The PALS trial will be a pragmatic, randomised controlled trial comparing participants receiving the Genie intervention to a wait-list control group. Eligible participants will be recruited from organisations working within a community setting: any adult identified as socially isolated or at-risk of loneliness and living in the community will be eligible. Genie will be delivered by trained facilitators recruited from community organisations. The primary outcome will be the difference in the SF-12 Mental Health composite scale score at 6-month follow-up between the intervention and control group using a mixed effects model (accounting for clustering within facilitators and organisation). Secondary outcomes will be loneliness, social isolation, well-being, physical health and engagement with new activities. The economic evaluation will use a cost-utility approach, and adopt a public sector perspective to include health-related resource use and costs incurred by other public services. Exploratory analysis will use a societal perspective, and explore broader measures of benefit (capability well-being). A qualitative process evaluation will explore organisational and environmental arrangements, as well as stakeholder and participant experiences of the study to understand the factors likely to influence future sustainability, implementation and scalability of using a social network intervention within this context., Ethics and Dissemination: This study has received NHS ethical approval (REC reference: 18/SC/0245). The findings from PALS will be disseminated widely through peer-reviewed publications, conferences and workshops in collaboration with our community partners., Trial Registration Number: ISRCTN19193075., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY. Published by BMJ.)

Chronic obstructive pulmonary disease (COPD) is heterogeneous, but persistent airflow obstruction (AFO) is fundamental to diagnosis. We studied AFO consistency from initial diagnosis and explored factors associated with absent or inconsistent AFO. This was a retrospective observational study using patient-anonymised routine individual data in Care and Health Information Analytics (CHIA) database. Identifying a prevalent COPD cohort based on diagnostic codes in primary care records, we used serial ratios of forced expiratory volume in 1 s to forced vital capacity (FEV1/FVC%) from time of initial COPD diagnosis to assign patients to one of three AFO categories, according to whether all (persistent), some (variable) or none (absent) were <70%. We described respiratory prescriptions over 3 years (2011-2013) and used multivariable logistic regression to estimate odds of absent or variable AFO and potential predictors. We identified 14,378 patients with diagnosed COPD (mean ± SD age 68.8 ± 10.7 years), median (IQR) COPD duration of 60 (25,103) months. FEV1/FVC% was recorded in 12,491 (86.9%) patients: median (IQR) 5 (3, 7) measurements. Six thousand five hundred and fifty (52.4%) had persistent AFO, 4507 (36.1%) variable AFO and 1434 (11.5%) absent AFO. Being female, never smoking, having higher BMI or more comorbidities significantly predicted absent and variable AFO. Despite absent AFO, 57% received long-acting bronchodilators and 60% inhaled corticosteroids (50% and 49%, respectively, in those without asthma). In all, 13.1% of patients diagnosed with COPD had unrecorded FEV1/FVC%; 11.5% had absent AFO on repeated measurements, yet many received inhalers likely to be ineffective. Such prescribing is not evidence based and the true cause of symptoms may have been missed.

Background: Older patients who have foot pain report variation in access to services to manage their foot health. To plan services it is essential to understand the scale and burden of foot pain that exists for GPs., Aim: To provide UK-wide population-level data of the frequency of foot and/or ankle pain encounters recorded in general practice., Design and Setting: Population-based cohort design study using data drawn from the UK Clinical Practice Research Datalink (CPRD) from January 2010 to December 2013., Method: All CPRD data were collected prospectively by participating GPs. The primary outcome was prevalence of GP encounters for foot and/or ankle pain, stratified by age, sex, and different subgroups of causes., Results: A foot and/or ankle pain encounter was recorded for 346 067 patients, and there was a total of 567 095 recorded encounters (mean per person 1.6, standard deviation [SD] 1.3). The prevalence of recorded encounters of foot and/or ankle pain was 2980 per 100 000 (3%). The number of patients with a recorded encounter of foot and/or ankle pain was 1820 per 100 000 (1.8%). Foot and/or ankle pain encounters were reported across all age groups (54.4% females), with those aged 71-80 years placing the greatest burden on GPs. The most common specified referrals were to orthopaedics ( n = 36 881) and physiotherapy ( n = 33 987), followed by podiatry ( n = 25 980)., Conclusion: The burden of foot and/or ankle pain encounters recorded by GPs is not insubstantial, and spans all ages, with a high proportion of referrals to orthopaedics. The authors recommend further exploration of 'first-contact practitioners' for foot and/or ankle pain in general practice to alleviate the burden on GPs., (© British Journal of General Practice 2019.)

Objective: The aim of this study was to investigate whether foot and lower limb related symptoms were associated with work participation and poor mobility in people with Systemic Lupus Erythematosus (SLE)., Method: A quantitative, cross-sectional, self-reported survey design was utilised. People with SLE from six United Kingdom (UK) treatment centres and a national register were invited to complete a survey about lower limb and foot health, work participation and mobility. Data collected included work status and the prevalence of foot symptoms. The focus of the analyses was to explore potential associations between poor foot health work non-participation., Results: In total, 182 useable surveys were returned. Seventy-nine respondents reported themselves as employed and 32 reported work non-participation. The remaining were retired due to age or reported work non-participation for other reasons. Work non-participation due to foot symptoms was significantly associated with difficulty walking ( p  = 0.024), past episodes of foot swelling ( p  = 0.041), and past episodes of foot ulceration ( p  = 0.018). There was a significant increase in foot disability scores amongst those not working (mean 18.13, 95% CI: 14.85-21.41) compared to those employed (mean 10.16, 95% CI: 8.11-12.21)., Conclusions: Twenty-nine% of people with SLE reported work non-participation because of lower limb or foot problems. Our results suggest that foot health and mobility may be important contributors to a persons' ability to remain in work and should be considered as part of a clinical assessment., Competing Interests: The University of Salford (HSCR14/25) National Research Ethics Committee (14/SC/1009) granted ethical approval for the study. All research was completed in accordance with the declaration of Helsinki guidelines for research practice. Information about the purpose and intended use of the survey was included in a covering letter as part of the survey data sheet. Consent to take part in the survey was considered implicit following the completion and return of the form.Consent, including to publish, was obtained as part of the ethical approval process.The authors declare that they have no competing interests.Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.