Depressive Symptoms, Socioeconomic Position, and Mortality in Older People Living With and Beyond Cancer.

OBJECTIVE: Evidence shows that higher depressive symptoms are associated with mortality among people living with and beyond cancer (LWBC). However, prior studies have not accounted for a wider range of potential confounders, and no study has explored whether socioeconomic position (SEP) moderates the association. This study aimed to examine the association between depressive symptoms and mortality among people LWBC, and moderation by SEP. METHODS: Participants from the English Longitudinal Study of Aging, diagnosed with cancer and with a measure of depressive symptoms within 4 years after their diagnosis, were included. Elevated depressive symptoms were indicated by a score of ≥3 on the eight-item Center for Epidemiologic Studies Depression Scale. Cox regression models examined associations with all-cause mortality. Competing risk regression examined associations with cancer mortality. RESULTS: In 1352 people LWBC (mean age = 69.6 years), elevated depressive symptoms were associated with a 93% increased risk of all-cause mortality (95% confidence interval = 1.52-2.45) within the first 4 years of follow-up and a 48% increased risk within a 4- to 8-year follow-up (95% confidence interval = 1.02-2.13) after multivariable adjustment. Elevated depressive symptoms were associated with a 38% increased risk of cancer mortality, but not after excluding people who died within 1 year after baseline assessments. There were no interactions between depressive symptoms and SEP. CONCLUSIONS: Elevated depressive symptoms are associated with a greater risk of all-cause mortality among people LWBC within an 8-year follow-up period. Associations between depressive symptoms and cancer mortality might be due to reverse causality.

The impact of continuous lenalidomide maintenance treatment on people living with multiple myeloma-a single-centre, qualitative service evaluation study.

PURPOSE: Continuous lenalidomide maintenance treatment after autologous stem cell transplantation delivers improvement in progression free and overall survival among newly diagnosed multiple myeloma patients and has been the standard of care in the UK since March 2021. However, there is scant information about its impact on patients' day-to-day lives. This service evaluation aimed to qualitatively assess patients receiving lenalidomide treatment at a cancer centre in London, in order that the service might better align with needs and expectations of patients. METHODS: We conducted 20 semi-structured interviews among myeloma patients who were on continuous lenalidomide maintenance treatment at a specialist cancer centre in London. Members of the clinical team identified potentially eligible participants to take part, and convenience sampling was used to select 10 male and 10 female patients, median age of 58 (range, 45-71). The median treatment duration was 11 months (range, 1-60 months). Participants were qualitatively interviewed following the same semi-structured interview guide, which was designed to explore patient experience and insights of lenalidomide. Reflexive thematic analysis was used for data analysis. RESULTS: Four overarching themes were as follows: (i) lenalidomide: understanding its role and rationale; (ii) reframing the loss of a treatment-free period to a return to normal life; (iii) the reality of being on lenalidomide: balancing hopes with hurdles; (iv) gratitude and grievances: exploring mixed perceptions of care and communication. Results will be used to enhance clinical services by tailoring communication to better meet patients' preferences when making treatment decisions. CONCLUSION: This study highlights that most patients feel gratitude for being offered continuous lenalidomide and perceive it as alleviating some fears concerning relapse. It reveals variations in side effects in different age groups; younger patients reported no/negligible side effects, whilst several older patients with comorbidities described significant symptom burden, occasionally leading to treatment discontinuation which caused distress at the perceived loss of prolonged remission. Future research should prioritise understanding the unique needs of younger patients living with multiple myeloma.

To prove or improve? Examining how paradoxical tensions shape evaluation practices in accreditation contexts.

INTRODUCTION: Although programme evaluation is increasingly routinised across the academic health sciences, there is scant research on the factors that shape the scope and quality of evaluation work in health professions education. Our research addresses this gap, by studying how the context in which evaluation is practised influences the type of evaluation that can be conducted. Focusing on the context of accreditation, we critically examine the types of paradoxical tensions that surface as evaluation-leads consider evaluation ideals or best practices in relation to contextual demands associated with accreditation seeking. METHODS: Our methods were qualitative and situated within a critical realist paradigm. Study participants were 29 individuals with roles requiring responsibility and oversight on evaluation work. They worked across 4 regions, within 26 academic health science institutions. Data were collected using semi-structured interviews and analysed using framework and matrix analyses. RESULTS: We identified three overarching themes: (i) absence of collective coherence about evaluation practice, (ii) disempowerment of expertise and (iii) tensions as routine practice. Examples of these latter tensions in evaluation work included (i) resourcing accreditation versus resourcing robust evaluation strategy (performing paradox), (ii) evaluation designs to secure accreditation versus design to spur renewal and transformation (performing-learning paradox) and (iii) public dissemination of evaluation findings versus restricted or selective access (publicising paradox). Sub-themes and illustrative data are presented. DISCUSSION: Our study demonstrates how the high-stakes context of accreditation seeking surfaces tensions that can risk the quality and credibility of evaluation practices. To mitigate these risks, those who commission or execute evaluation work must be able to identify and reconcile these tensions. We propose strategies that may help optimise the quality of evaluation work alongside accreditation-seeking efforts. Critically, our research highlights the limitations of continually positioning evaluation purely as a method versus as a socio-technical practice that is highly vulnerable to contextual influences.

"What I wanted to do was build myself back up and prepare": qualitative findings from the PERCEPT trial of prehabilitation during autologous stem cell transplantation in myeloma.

BACKGROUND: The addition of qualitative methodology to randomised controlled trials evaluating complex interventions allows better understanding of contextualised factors and their potential influence on trial delivery and outcomes, as well as opportunities for feedback on trial participation to improve future trial protocols. This study explored the experiences of participation in cancer rehabilitation research during active cancer treatment. Participants were people living with haematological cancer myeloma, undergoing autologous stem cell transplantation (ASCT) recruited to the PERCEPT myeloma pilot trial. METHODS: A qualitative semi-structured interview study, embedded within a pilot randomised controlled trial of a physiotherapist-led exercise intervention delivered before, during and after ASCT among people living with myeloma. Transcripts were analysed using reflexive thematic analysis. RESULTS: Interviews from 16 trial participants (n = 8 intervention group; n = 8 control group; mean age 61 years, 56% male) were analysed. Four main themes were identified: (1) "It's not just beneficial for me, it's for people after me as well"; (2) Disparities in experience of recovery - expectations, feeling prepared and support; (3) "What I wanted to do was build myself back up and prepare"; (4) Active ingredients - participants' experience of the trial intervention. Participants reported both altruistic and perceived personal gain as motivators for enrolling in the trial. Disappointment caused by allocation to control arm may have led to participants seeking exercise elsewhere, indicating possible contamination of control condition. Disparities in experience of recovery from transplant were evident with intervention participants reporting greater trajectory of recovery. CONCLUSIONS: The findings from this embedded qualitative study highlight numerous considerations required when designing pilot and efficacy trials of complex interventions. The addition of qualitative investigation offers greater understanding of motivations for participation, intervention mechanisms at play as well as effects of participation that may impact interpretation of quantitative outcomes. TRIAL REGISTRATION: Qualitative findings from a prospectively registered pilot trial (ISRCTN15875290), registered 13/02/2019.

Exercise prehabilitation for people with myeloma undergoing autologous stem cell transplantation: results from PERCEPT pilot randomised controlled trial.

BACKGROUND: Autologous stem cell transplant (ASCT) is first line treatment for newly diagnosed patients with myeloma but often results in functional deficits and reduced quality of life (QOL). Physically active myeloma patients have better QOL, less fatigue and reduced morbidity. This trial aimed to investigate the feasibility of a physiotherapist-led exercise intervention delivered across the continuum of the myeloma ASCT pathway at a UK centre. Initially designed and delivered as a face-to-face trial, the study protocol was adapted to virtual delivery in response to the COVID-19 pandemic. MATERIAL AND METHODS: A pilot randomised controlled trial of a partly supervised exercise intervention with incorporated behaviour change techniques delivered before, during and for 3 months following ASCT compared to usual care. Face-to-face delivery of the pre-ASCT supervised intervention was adapted to virtually-supervised group classes via video conferencing. Primary outcomes related to feasibility; recruitment rate, attrition and adherence. Secondary outcomes included patient reported measures of QOL (EORTC C30, FACT-BMT, EQ5D), and fatigue (FACIT-F), measures of functional capacity (six-minute walk test (6MWT), timed sit-to-stand (TSTS), hand grip strength, self-reported and objective physical activity (PA). RESULTS: Over 11 months 50 participants were enrolled and randomised. Overall, uptake to the study was 46%. The attrition rate was 34%, mainly related to failure to undergo ASCT. Loss of follow-up for other reasons was low. Secondary outcomes demonstrate potential for the benefit of exercise prior to, during and after ASCT with improvements in QOL, fatigue, functional capacity and PA evident on admission for ASCT and 3 months post-ASCT. DISCUSSION: Results indicate acceptability and feasibility of delivering exercise prehabilitation, in person and virtually within the ASCT pathway in myeloma. The effects of prehabilitation and rehabilitation provision as a component of the ASCT pathway warrants further investigation.

High patient satisfaction and increased physical activity following a remote multidisciplinary team multiple myeloma clinic.

PURPOSE: Patients with multiple myeloma suffer from disease-related complications such as bone destruction, toxicities from repeated therapies and age-related co-morbidities. With improved treatment options, patients are living longer and have specific survivorship needs such as low exercise levels that need to be addressed. In this study, we designed, implemented and evaluated a multidisciplinary team (MDT) myeloma clinic that provided participants with tailored exercise and lifestyle advice. METHODS: The Promoting Individualised Self-Management and Survivorship (PrISMS) clinic was set up in two UK myeloma centres. This remote MDT clinic comprised of a doctor, a nurse specialist and a physiotherapist. Patients were required to complete blood tests and a questionnaire about their symptoms and concerns before each consultation. Patient-reported outcome measures were captured using validated questionnaires. Patient feedback was collected using a specially designed survey and structured telephone interviews. RESULTS: Sixty-one patients were enrolled in the pilot clinic with 210 consultations held during the study period. Nine patients had disease progression and were referred safely back to face-to-face clinics. There was a significant improvement in patients' exercise score (p = 0.02) after PrISMS clinic. Patient satisfaction was high, with 83% feeling more confident in self-managing myeloma after PrISMS clinic. CONCLUSION: PrISMS clinic is safe and feasible, with high patient compliant and acceptability. It empowers patients to self-manage their condition and encourages physical activity, which is associated with improved quality of life and fatigue level. Future randomised controlled trials will help to confirm its benefits on patient clinical outcomes and cost-effectiveness.

Associations between the home environment and childhood weight change: a cross-lagged panel analysis.

BACKGROUND: The obesogenic quality of the home environment is hypothesised to play an important role in children's weight development but few prospective studies have investigated relationships between the home environment and adiposity across childhood. OBJECTIVE: To investigate the continuity and stability of the home environment from ages 4 to 12, and bi-directional relationships between the home environment and BMI-SDS from ages 4 to 12. METHODS: Parents from the Gemini cohort completed the Home Environment Interview (HEI), a comprehensive measure of the obesogenic home environment, when their children were aged 4 and 12 (n = 149 families, n = 298 children). The obesogenic home environment was measured using four composite scores capturing the food, activity, media environments, and the overall home environment. Child weights and heights were used to calculate BMI-SDS. Continuity was assessed with Pearson's correlations between scores at each time point, and stability by changes in mean scores over time. Cross-lagged analyses were performed (HEI composites at age 4 to BMI-SDS at age 12 and the reverse) to measure the magnitude and direction of associations. RESULTS: The home environment showed moderate-to-high continuity from ages 4 to 12 (r = 0.30-0.64). The overall home environment (r = 0.21, p < 0.01) and media composites (r = 0.23, p < 0.01) were cross-sectionally associated with child BMI-SDS at age 12, but not at age 4. Longitudinally, the home media environment at age 4 predicted increases in child BMI-SDS at age 12 (ß; 95% CI = 0.18; 0.08,0.28, p < 0.01). No associations were observed for the reverse path, or the remaining composites (the overall, food and activity) in either direction. CONCLUSION: This study provides evidence that the obesogenic home environment tracks across childhood and highlights the importance of the early home media environment for child weight development. The findings provide insight into key aspects of the home environment that could be targeted when developing obesity treatment or prevention strategies.

The role of partner support for health behaviours in people living with and beyond cancer: A qualitative study.

OBJECTIVE: This study aimed to qualitatively explore how partner support for health behaviours is perceived, received, and utilised in people living with and beyond cancer (LWBC). METHODS: Semi-structured audio interviews were conducted with 24 participants, 15 men and nine women, living with and beyond breast, prostate, and colorectal cancer. Inductive and deductive Thematic Analysis was used to analyse the data. RESULTS: Three key themes with six subthemes were identified relating to partner support for health behaviours: (1) Interdependence (Reciprocity, Overt Control, Influence & Motivation) (2) Concordance (Shared Attitudes & Health Beliefs, Shared Health Behaviour) and (3) Communal Coping (Communal Orientation towards Health and Decision Making, Co-operative Action in Health Behaviour). CONCLUSIONS: Partner support plays a unique and significant role in the health behaviours of people LWBC. Partners play a collaborative role in managing health and facilitating health behaviours, while the high level of concordance in couples may represent a potential barrier to change via the reinforcement of maladaptive health beliefs and behaviours. IMPLICATIONS FOR CANCER SURVIVORS: Overall, findings demonstrate that partners should be considered and included where possible when designing future behaviour change interventions for people LWBC.

Exploring the perceived impact of social support on the health behaviours of people living with and beyond cancer during the COVID-19 pandemic: a qualitative study.

PURPOSE: Social support facilitated healthy behaviours in people living with and beyond cancer (LWBC) before the COVID-19 pandemic. Little is known about how social support impacted their health behaviours during the pandemic when social restrictions were imposed. The aim of this study was to qualitatively explore how social support was perceived to impact the health behaviours of people LWBC during the COVID-19 pandemic. METHODS: Semi-structured interviews were conducted via telephone with 24 adults living with and beyond breast, prostate and colorectal cancer. Inductive and deductive framework analysis was used to analyse the data. RESULTS: Five themes developed. These were (1) Companionship and accountability as motivators for physical activity, (2) Social influences on alcohol consumption, (3) Instrumental support in food practices, (4) Informational support as important for behaviour change and (5) Validation of health behaviours from immediate social networks. CONCLUSION: This study described how companionship, social influence, instrumental support, informational support and validation were perceived to impact the health behaviours of people LWBC during the COVID-19 pandemic. Interventions for people LWBC could recommend co-participation in exercise with friends and family; promote the formation of collaborative implementation intentions with family to reduce alcohol consumption; and encourage supportive communication between partners about health behaviours. These interventions would be useful during pandemics and at other times. Government policies to help support clinically extremely vulnerable groups of people LWBC during pandemics should focus on providing access to healthier foods.

The impact of COVID-19 on autologous stem cell transplantation in multiple myeloma: A single-centre, qualitative evaluation study.

Autologous stem cell transplantation (ASCT) is standard of care in biologically fit, newly diagnosed multiple myeloma (MM) patients, offering better therapeutic outcomes and improved quality of life (QoL). However, with the UK's 1st national lockdown on 23/03/2020, several guidelines recommended deferring ASCT due to risks of infection, with resource limitations forcing some units to suspend ASCT entirely. Such changes to patients' treatment plans inevitably altered their lived experience during these uncertain times with expected impact on QoL. We conducted a qualitative study using semi-structured interviews to gain insight into MM patients' understanding of their disease, initial therapy and ASCT, and their response to therapy changes. A clinical snapshot of how COVID-19 affected the MM ASCT service in a single UK institution is also provided, including changes to chemotherapy treatment plans, timing, and prioritisation of ASCT. Framework analysis identified 6 overarching themes: (1) beliefs about ASCT, (2) perceptions of information provided about MM and ASCT, (3) high levels of fear and anxiety due to COVID-19, (4) feelings about ASCT disruption or delay due to COVID-19, (5) perceptions of care, and (6) importance of social support. Example subthemes were beliefs that ASCT would provide a long-remission/best chance of normality including freedom from chemotherapy and associated side-effects, disappointment, and devastation at COVID-related treatment delays (despite high anxiety about infection) and exceptionally high levels of trust in the transplant team. Such insights will help us adjust our service and counselling approaches to be more in tune with patients' priorities and expectations.

A Survey of Therapeutic Radiographers' Knowledge, Practices, and Barriers in Delivering Health Behaviour Advice to Cancer Patients.

Therapeutic radiographers (TRs) are well-placed to deliver advice to cancer patients; however, limited research exists on their practices in providing advice on healthy lifestyle behaviours. Through an online survey, this study aimed to explore TRs' current practices, barriers, and facilitators around delivering healthy behaviour advice to cancer patients. An online survey was sent to 72 radiotherapy departments in the UK and 583 TRs responded to the survey. Findings showed that levels of enquiry and provision of advice on healthy behaviours were low, with less than 25% advising patients on physical activity, healthy eating, weight management, smoking cessation, and reducing alcohol intake as standard practice. Lack of knowledge, resources, and training were identified as barriers, in addition to perceived lack of patient interest and lack of time. TRs reported a strong desire to undergo training to enable them to deliver health behaviour advice to patients, with an identified preference for online training. Cancer patients look to healthcare professionals for advice on health behaviours, and TRs are well-placed to deliver this advice. The findings of this study provide insight into the areas that need addressing to enable TRs to support positive health behaviours among cancer patients.

The Home Environment Interview and associations with energy balance behaviours and body weight in school-aged children - a feasibility, reliability, and validity study.

BACKGROUND: The home environment is thought to influence children's weight trajectories. However, few studies utilise composite measures of the home environment to examine associations with energy balance behaviours and weight. The present study aimed to adapt and update a comprehensive measure of the obesogenic home environment previously developed for pre-schoolers, and explore associations with school-aged children's energy balance behaviours and weight. METHODS: Families from the Gemini cohort (n = 149) completed the Home Environment Interview (HEI) via telephone when their children were 12 years old. The HEI comprises four composite scores: one for each domain (food, activity and media) of the environment, as well as a score for the overall obesogenic home environment. The primary caregiver also reported each child's height and weight (using standard scales and height charts), diet, physical activity and sedentary screen-based behaviours. A test-retest sample (n = 20) of caregivers completed the HEI a second time, 7-14 days after the initial interview, to establish test-retest reliability. RESULTS: Children (n = 298) living in 'higher-risk' home environments (a 1 unit increase in the HEI obesogenic risk score) were less likely to consume fruits (OR; 95% CI = 0.40; 0.26-0.61, p < 0.001), and vegetables (0.30; 0.18-0.52, p < 0.001), and more likely to consume energy-dense snack foods (1.71; 1.08-2.69, p = 0.022), convenience foods (2.58; 1.64-4.05, p < 0.001), and fast foods (3.09; 1.90-5.04, p < 0.001). Children living in more obesogenic home environments also engaged in more screen-time (ß (SE) = 4.55 (0.78), p < 0.001), spent more time playing video games (ß (SE) = 1.56 (0.43), p < 0.001), and were less physically active (OR; 95% CI = 0.57; 0.40-0.80, p < 0.01). Additionally, there was a positive association between higher-risk overall home environment composite score and higher BMI-SDS (ß (SE) = 0.23 (0.09), p < 0.01). This finding was mirrored for the home media composite (ß (SE) = 0.12 (0.03), p < 0.001). The individual home food and activity composite scores were not associated with BMI-SDS. CONCLUSION: Findings reveal associations between the overall obesogenic home environment and dietary intake, activity levels and screen-based sedentary behaviours, as well as BMI in 12 year olds. These findings suggest that the home environment, and in particular the home media environment, may be an important target for obesity prevention strategies.

Physical Activity Behavior Before, During, and After COVID-19 Restrictions: Longitudinal Smartphone-Tracking Study of Adults in the United Kingdom.

BACKGROUND: The COVID-19 pandemic led to the implementation of worldwide restrictive measures to reduce social contact and viral spread. These measures have been reported to have a negative effect on physical activity (PA). Studies of PA during the pandemic have primarily used self-reported data. The single academic study that used tracked data did not report on demographics. OBJECTIVE: This study aimed to explore patterns of smartphone-tracked activity before, during, and immediately after lockdown in the United Kingdom, and examine differences by sociodemographic characteristics and prior levels of PA. METHODS: Tracked longitudinal weekly minutes of PA were captured using the BetterPoints smartphone app between January and June 2020. Data were plotted by week, demographics, and activity levels at baseline. Nonparametric tests of difference were used to assess mean and median weekly minutes of activity at significant points before and during the lockdown, and as the lockdown was eased. Changes over time by demographics (age, gender, Index of Multiple Deprivation, baseline activity levels) were examined using generalized estimating equations (GEEs). RESULTS: There were 5395 users with a mean age of 41 years (SD 12) and 61% (n=3274) were female. At baseline, 26% (n=1422) of users were inactive, 23% (n=1240) were fairly active, and 51% (n=2733) were active. There was a relatively even spread across deprivation deciles (31% [n=1693] in the least deprived deciles and 23% in the most [n=1261]). We found significant changes in PA from the week before the first case of COVID-19 was announced (baseline) to the week that social distancing restrictions were relaxed (Friedman test: χ22=2331, P<.001). By the first full week of lockdown, the median change in PA was 57 minutes less than baseline. This represents a 37% reduction in weekly minutes of PA. Overall, 63% of people decreased their level of activity between baseline and the first week of COVID-19 restrictions. Younger people showed more PA before lockdown but the least PA after lockdown. In contrast, those aged >65 years appeared to remain more active throughout and increased their activity levels as soon as lockdown was eased. Levels of PA among those classed as active at baseline showed a larger drop compared with those considered to be fairly active or inactive. Socioeconomic group and gender did not appear to be associated with changes in PA. CONCLUSIONS: Our tracked PA data suggests a significant drop in PA during the United Kingdom's COVID-19 lockdown. Significant differences by age group and prior PA levels suggests that the government's response to COVID-19 needs to be sensitive to these individual differences and the government should react accordingly. Specifically, it should consider the impact on younger age groups, encourage everyone to increase their PA, and not assume that people will recover prior levels of PA on their own.

Fatigue, quality of life and physical fitness following an exercise intervention in multiple myeloma survivors (MASCOT): an exploratory randomised Phase 2 trial utilising a modified Zelen design.

BACKGROUND: Exercise may improve fatigue in multiple myeloma survivors, but trial evidence is limited, and exercise may be perceived as risky in this older patient group with osteolytic bone destruction. METHODS: In this Phase 2 Zelen trial, multiple myeloma survivors who had completed treatment at least 6 weeks ago, or were on maintenance only, were enrolled in a cohort study and randomly assigned to usual care or a 6-month exercise programme of tailored aerobic and resistance training. Outcome assessors and usual care participants were masked. The primary outcome was the FACIT-F fatigue score with higher scores denoting less fatigue. RESULTS: During 2014-2016, 131 participants were randomised 3:1 to intervention (n = 89) or usual care (n = 42) to allow for patients declining allocation to the exercise arm. There was no difference between groups in fatigue at 3 months (between-group mean difference: 1.6 [95% CI: -1.1-4.3]) or 6 months (0.3 [95% CI: -2.6-3.1]). Muscle strength improved at 3 months (8.4 kg [95% CI: 0.5-16.3]) and 6 months (10.8 kg [95% CI: 1.2-20.5]). Using per-protocol analysis, cardiovascular fitness improved at 3 months (+1.2 ml/kg/min [95% CI: 0.3-3.7]). In participants with clinical fatigue (n = 17), there was a trend towards less fatigue with exercise over 6 months (6.3 [95% CI: -0.6-13.3]). There were no serious adverse events. CONCLUSIONS: Exercise appeared safe and improved muscle strength and cardiovascular fitness, but benefits in fatigue appeared limited to participants with clinical fatigue at baseline. Future studies should focus on patients with clinical fatigue. CLINICAL TRIAL REGISTRATION: The study was registered with ISRCTN (38480455) and is completed.

Sun exposure among teenage and young adult cancer survivors in the United Kingdom.

Skin cancers are a common form of second malignant neoplasm among teenage and young adult cancer survivors (TYACS). The Children's Oncology Group specifies that TYACS should adhere to safe sun practices and be screened for skin cancer annually. Cross-sectional self-report data collected by our group indicate over a third of TYACS (n = 229; mean age: 19.8 years) intentionally sunbathe, with many reporting sunburn. TYACS sunbathing, sunburn, and sunbed use are similar to the general population (P > 0.05). These data suggest TYACS require intervention to limit sun exposure and improve their sun safety habits.

Smoking, alcohol consumption, diet and physical activity following stoma formation surgery, stoma-related concerns, and desire for lifestyle advice: a United Kingdom survey.

BACKGROUND: Adherence to smoking, alcohol consumption, diet and physical activity (PA) guidelines may improve outcomes for people with a stoma. A better understanding of these behaviours following stoma formation surgery and their experiences and attitudes towards receiving lifestyle advice, could help identify specific gaps and inform interventions going forward. The aim of this study was to describe changes in current lifestyle following stoma formation and to explore concerns, desire for lifestyle information, advice and support among people who have or have had a stoma. METHODS: A sample of adults who currently had or in the past had a stoma for treatment for any medical condition was recruited online through relevant charities and companies, and invited to complete a cross-sectional, online survey. Consenting participants (n = 425) provided demographic information and completed brief, validated questionnaires about their lifestyle, alongside questions around their concerns regarding permanent stoma and experiences of lifestyle information and advice. Responses were summarised using descriptive statistics, and associations between reported concerns about stoma and changes in health behaviours were explored. RESULTS: Most respondents (93%) still had a stoma at the time of completing the survey. The majority (80%) had not consumed at least 5 portions of fruit and vegetables on the previous day and 20% reported they had not participated in at least 30 min of physical activity on any day in the previous week. Most respondents were non-smokers (84%) and did not exceed recommendations for alcohol intake (60%). Most (56%) felt their PA had decreased following stoma formation. Frequencies of concerns about a permanent stoma were high, and appeared to be associated with reported decreases in PA. Of those reporting nausea, 40% felt their diet had worsened since having their stoma. A large proportion of respondents had not received PA (42%) or dietary (30%) advice, and of these > 90% would have liked guidance. CONCLUSIONS: Few respondents to this survey were eating the recommended amount of fruit and vegetables, and most reported a decrease in their PA following stoma surgery. Lifestyle advice would be welcomed by this population, which professionals should take into account when addressing stoma- related concerns.

Goal setting for weight-related behavior change in children: An exploratory study.

BACKGROUND: There is an absence of studies exploring different goal-setting appraches and none which have examined the use of proxy goal-setting by parents for their children. AIM: To explore how proficient parents are in setting health behaviour goals for their children according to SMART (specific, measurable, achievable, realistic and time-framed) goal principles. A secondary aim was to examine associations between goal setting and change in health behaviors. METHODS: Participants were parents and children taking part in one of two trials incorporating goal setting. Study 1 ( Time2bHealthy) was an online program for parents of preschoolers ( n = 36) and Study 2 ( HIKCUPS) was a three-arm face-to-face trial examining a parent-centered dietary intervention, (Study2Diet); a child-centered physical activity intervention, (Study2PA); or combination of both (Study2Combo) ( n = 83). Goals were coded on five 'SMART' principles. Goals were scored 1 or 0 for each principle (1 indicated the principle was met and 0, not met). The total maximum score for each goal was 5. Mean total goal-score and means for each SMART principle were calculated. RESULTS: Mean (and standard deviation) goal setting scores for Study 1 were 3.84 (0.61), Study2Diet 2.17 (1.33), Study2PA 3.18 (1.45) and Study2Combo 2.24 (1.30). Goal-scores were significantly higher for Study 1 than Study 2 ( p < 0.001). In Study2Diet, goal setting was significantly associated with greater reduction in energy intake ( p = 0.019). CONCLUSIONS: Goal-scores were highest in Study 1, which used a supported online format for setting goals. Parents were better at setting physical activity goals, but these goals did not translate into improvements in physical activity behavior. Goals set by parents may be useful in energy intake reduction, however further research is required to determine benefits for weight status or physical activity.

Guidelines for screening and management of late and long-term consequences of myeloma and its treatment.

A growing population of long-term survivors of myeloma is now accumulating the 'late effects' not only of myeloma itself, but also of several lines of treatment given throughout the course of the disease. It is thus important to recognise the cumulative burden of the disease and treatment-related toxicity in both the stable and active phases of myeloma, some of which is unlikely to be detected by routine monitoring. We summarise here the evidence for the key late effects in long-term survivors of myeloma, including physical and psychosocial consequences (in Parts 1 and 2 respectively), and recommend the use of late-effects screening protocols in detection and intervention. The early recognition of late effects and effective management strategies should lead to an improvement in the management of myeloma patients, although evidence in this area is currently limited and further research is warranted.

Lifestyle advice provision to teenage and young adult cancer patients: the perspective of health professionals in the UK.

PURPOSE: Health professionals are an important source of information for teenage and young adult (TYA) cancer patients. However, little is known about health professionals' provision of lifestyle advice to young people with cancer who are in their care. METHODS: An online survey was distributed to health professionals within the UK who identified themselves as working with TYA cancer patients. Health professional awareness of lifestyle guidance, provision of lifestyle advice to young people and views on lifestyle information format and delivery were explored. RESULTS: Ninety-five health professionals (44% nurses; 28% allied health professionals; 17% physicians) completed the survey. The majority (72%) of respondents were aware of some lifestyle guidance for cancer patients. However, less than half of TYA health professionals (46%) were able to successfully recall the source of the guidelines and less than a third reported proving specific advice to the majority of their patients on weight management, smoking, alcohol consumption and sun safety. Many health professionals (38%) felt that they were not the right person to provide advice and cited lack of resources as a key barrier to advice provision. The majority (95%) reported being interested in a resource containing relevant lifestyle information that could be given to young people with cancer. CONCLUSIONS: TYA health professionals' awareness of lifestyle guidance and provision of advice regarding health behaviour is sub-optimal. Clear and comprehensive guidance written specifically for TYA health professionals could overcome the reported barriers and improve professionals' confidence in addressing and providing advice on lifestyle to young people with cancer.

Education in Twins and Their Parents Across Birth Cohorts Over 100 years: An Individual-Level Pooled Analysis of 42-Twin Cohorts.

Whether monozygotic (MZ) and dizygotic (DZ) twins differ from each other in a variety of phenotypes is important for genetic twin modeling and for inferences made from twin studies in general. We analyzed whether there were differences in individual, maternal and paternal education between MZ and DZ twins in a large pooled dataset. Information was gathered on individual education for 218,362 adult twins from 27 twin cohorts (53% females; 39% MZ twins), and on maternal and paternal education for 147,315 and 143,056 twins respectively, from 28 twin cohorts (52% females; 38% MZ twins). Together, we had information on individual or parental education from 42 twin cohorts representing 19 countries. The original education classifications were transformed to education years and analyzed using linear regression models. Overall, MZ males had 0.26 (95% CI [0.21, 0.31]) years and MZ females 0.17 (95% CI [0.12, 0.21]) years longer education than DZ twins. The zygosity difference became smaller in more recent birth cohorts for both males and females. Parental education was somewhat longer for fathers of DZ twins in cohorts born in 1990-1999 (0.16 years, 95% CI [0.08, 0.25]) and 2000 or later (0.11 years, 95% CI [0.00, 0.22]), compared with fathers of MZ twins. The results show that the years of both individual and parental education are largely similar in MZ and DZ twins. We suggest that the socio-economic differences between MZ and DZ twins are so small that inferences based upon genetic modeling of twin data are not affected.