Exploring patient experiences of surveillance for pancreatic cystic neoplasms: a qualitative study.

BACKGROUND: Pancreatic cystic neoplasms (PCN) are considered premalignant conditions to pancreatic adenocarcinoma with varying degrees of cancerous potential. Management for individuals who do not require surgical treatment involves surveillance to assess for cancerous progression. Little is known about patients' experience and the impact of living with surveillance for these lesions. AIMS: To explore the experiences of patients living with surveillance for PCNs. METHODS: Semi-structured qualitative interviews were conducted with patients under surveillance for pancreatic cystic neoplasms in the UK. Age, gender, time from surveillance and surveillance method were used to purposively sample the patient group. Data were analysed using reflexive thematic analysis. RESULTS: A PCN diagnosis is incidental and unexpected and for some, the beginning of a disruptive experience. How patients make sense of their PCN diagnosis is influenced by their existing understanding of pancreatic cancer, explanations from clinicians and the presence of coexisting health concerns. A lack of understanding of the diagnosis and its meaning for their future led to an overarching theme of uncertainty for the PCN population. Surveillance for PCN could be seen as a reminder of fears of PCN and cancer, or as an opportunity for reassurance. CONCLUSIONS: Currently, individuals living with surveillance for PCNs experience uncertainty with a lack of support in making sense of a prognostically uncertain diagnosis with no immediate treatment. More research is needed to identify the needs of this population to make improvements to patient care and reduce negative experiences.

Participants' perspectives of being recruited into a randomised trial of a weight loss intervention before colorectal cancer surgery: a qualitative interview study.

BACKGROUND: The period between cancer diagnosis and surgery presents an opportunity for trials to assess the feasibility of behaviour change interventions. However, this can be a worrying time for patients and may hinder recruitment. We describe the perspectives of patients with excess weight awaiting colorectal cancer surgery about their recruitment into a randomised trial of a prehabilitation weight loss intervention. METHODS: We interviewed the first 26 participants from the 8 recruitment sites across England in the 'CARE' feasibility trial. Participants were randomised into either usual care (n = 13) or a low-energy nutritionally-replete total diet replacement programme with weekly remote behavioural support by a dietitian (n = 13). The semi-structured interviews occurred shortly after recruitment and the questions focused on participants' recollections of being recruited into the trial. We analysed data rapidly and then used a mind-mapping technique to develop descriptive themes. Themes were agreed by all co-authors, including a person with lived-experience of colorectal surgery. RESULTS: Participants had a mean body mass index (± SD) of 38 kg/m2 (± 6), age of 50 years (± 12), and 42% were female. People who participated in the trial were motivated by the offer of structured weight loss support that could potentially help them improve their surgical outcomes. However, participants also had concerns around the potential unpalatability of the intervention diet and side effects. Positive attitudes of clinicians towards the trial facilitated recruitment but participants were disappointed when they were randomised to usual care due to clinical teams' overemphasis on the benefits of losing weight. CONCLUSIONS: Patients were motivated to take part by the prospect of improved surgical outcomes. However, the strong preference to be allocated to the intervention suggests that balanced communication of equipoise is crucial to minimise disappointment from randomisation to usual care and differential dropout from the trial. CLINICAL TRIAL REGISTRATION: ISRCTN39207707, Registration date 13/03/2023.

Altered Mental Status and Cardiac Failure Due to Thiamine Deficiency in an Overweight Teen.

We describe an overweight but otherwise previously healthy 17-year-old female who presented with altered mental status and rapidly progressive weakness. She was ultimately diagnosed with Wernicke encephalopathy and wet beriberi resulting from severe thiamine deficiency. She required admission to the pediatric ICU because of hypoventilation with progressive weakness and worsening encephalopathy and was found to have impaired cardiac function as assessed by echocardiography. Her heart function and encephalopathy improved on initiation of thiamine repletion. She remained in inpatient rehabilitation for 10 months but still remained weak at discharge. Thiamine deficiency is not commonly considered in the United States as a diagnosis other than in patients with severe alcohol use disorder. However, thiamine may be depleted in as little as 2 weeks if nutrition is inadequate. In such a setting, thiamine deficiency is an important etiology to consider early in the pediatric patient with altered mentation especially because it can be readily and safely treated.

Codesign of Lynch ChoicesTM : Using implementation science to create a clinically deliverable patient decision support website to transform cancer genetics care pathways.

BACKGROUND: Resources including Patient Decision Aids (PtDA) are useful and valued by patients and clinicians to provide information and complement shared decision-making. Despite their promise, few PtDA exist for patients with genetic cancer susceptibility facing difficult decisions about risk management. We aimed to fill this gap, partnering with patients to codesign Lynch ChoicesTM , a PtDA website for families with Lynch Syndrome. In addition to a Patient Reference Panel, we purposively invited an international stakeholder panel including charities, public bodies, clinical and academic experts. Implementation strategies and frameworks were employed to optimise translation of research findings to improve care. METHODS: Patient/stakeholder suggestions were incorporated in a transparent Table of Changes and prioritised using the Person-Based Approach throughout planning and codesign of Lynch ChoicesTM . An interactive stakeholder meeting was convened to identify barriers and facilitators to clinical implementation of the PtDA. RESULTS: Patient and stakeholder partnerships drove the direction of the research throughout codesign, resulting in several iterative refinements to the PtDA prior to roll out including the addition of illustrations/videos, clearer presentation of cancer risks and increased accessibility for lower literacy. Barriers and facilitators identified from stakeholders were used to create an implementation process map. CONCLUSIONS: Creating an effective, engaging PtDA is not enough. Systematic uptake in real world clinical practice, with its resource limitations, is needed to optimise benefit to patients and clinicians. Assessment of speed and breadth of dissemination and usage will be collected to further evidence the benefit of embedding implementation science methods from the outset to translate research findings into clinical practice.

Barriers and facilitators to integrated cancer care between primary and secondary care: a scoping review.

PURPOSE: This scoping review identifies and characterises reported barriers and facilitators to providing integrated cancer care reported in the international literature, and develops recommendations for clinical practice. METHODS: This scoping review included literature published between 2009 and 2022 and describes the delivery of integrated cancer care between primary and secondary care sectors. Searches were conducted of an online database Ovid Medline and grey literature. RESULTS: The review included thirty-two papers. Barriers and facilitators to integrated cancer care were identified in three core areas: (1) at an individual user level around patient-healthcare professional interactions, (2) at an organisational level, and (3) at a healthcare system level. The review findings identified a need for further training for primary care professionals on cancer care, clarity in the delineation of primary care and oncologist roles (i.e. who does what), effective communication and engagement between primary and secondary care, and the provision of protocols and guidelines for follow-up care in cancer. CONCLUSIONS: Information sharing and communication between primary and secondary care must improve to meet the increasing demand for support for people living with and beyond cancer. Delivering integrated pathways between primary and secondary care will yield improvements in patient outcomes and health economic costs.

Experiences of using a supported digital intervention for cancer survivors in primary care: a qualitative process evaluation.

BACKGROUND: Increasing healthy behaviours (e.g. physical activity) can improve cancer survivors' quality of life. Renewed is a digital intervention developed to provide behaviour change advice with brief healthcare practitioner support. A three-arm randomised controlled trial (Renewed, Renewed with support or a control condition) suggested that prostate cancer survivors in the supported arm had slightly greater estimates of improvements in quality of life compared to other cancer survivors. This study explored participants' experiences using Renewed to understand how it might have worked and why it might have provided greater benefit for prostate cancer survivors and those in the supported arm. METHODS: Thirty-three semi-structured telephone interviews with cancer survivors' (breast, colorectal, prostate) from the Renewed trial explored their experiences of using Renewed and their perceptions of the intervention. Data were analysed using inductive thematic analysis. RESULTS: Some participants only used Renewed modestly but still made behaviour changes. Barriers to using Renewed included low perceived need, joining the study to advance scientific knowledge or 'to give back', or due to perceived availability of support in their existing social networks. Prostate cancer survivors reported less social support outside of Renewed compared to participants with other cancers. CONCLUSION: Renewed may support healthy behaviour changes among cancer survivors even with limited use. Interventions targetting individuals who lack social support may be beneficial. IMPLICATIONS FOR CANCER SURVIVORS: Cancer survivors' experiences may inform the development of digital interventions to better serve this population.

Co-design of patient information leaflets for germline predisposition to cancer: recommendations for clinical practice from the UK Cancer Genetics Group (UKCGG), Cancer Research UK (CRUK) funded CanGene-CanVar Programme and the Association of Genetic Nurse Counsellors (AGNC).

BACKGROUND: Testing for germline pathogenic variants (GPVs) in cancer predisposition genes is increasingly offered as part of routine care for patients with cancer. This is often urgent in oncology clinics due to potential implications on treatment and surgical decisions. This also allows identification of family members who should be offered predictive genetic testing. In the UK, it is common practice for healthcare professionals to provide a patient information leaflet (PIL) at point of care for diagnostic genetic testing in patients with cancer, after results disclosure when a GPV is identified, and for predictive testing of at-risk relatives. Services usually create their own PIL, resulting in duplication of effort and wide variability regarding format, content, signposting and patient input in co-design and evaluation. METHODS: Representatives from UK Cancer Genetics Group (UKCGG), Cancer Research UK (CRUK) funded CanGene-CanVar programme and Association of Genetic Nurse Counsellors (AGNC) held a 2-day meeting with the aim of making recommendations for clinical practice regarding co-design of PIL for germline cancer susceptibility genetic testing. Lynch syndrome and haematological malignancies were chosen as exemplar conditions. RESULTS: Meeting participants included patient representatives including as co-chair, multidisciplinary clinicians and other experts from across the UK. High-level consensus for UK recommendations for clinical practice was reached on several aspects of PIL using digital polling, including that PIL should be offered, accessible, co-designed and evaluated with patients. CONCLUSIONS: Recommendations from the meeting are likely to be applicable for PIL co-design for a wide range of germline genetic testing scenarios.

'I think it affects every aspect of my life, really': Cancer survivors' experience of living with chronic pain after curative cancer treatment in England, UK.

AIM: To explore cancer survivors' experiences of living with chronic pain after curative cancer treatment in England, UK. METHODS: A qualitative study using telephone interviews with adult cancer survivors experiencing chronic pain after curative cancer treatment. Interview data was analysed using a reflexive thematic approach [1-3]. FINDINGS: Nineteen participants: 14 female, 5 male, mean age 62.4 years, 1.5-48 years since cancer diagnosis, eight tumour groups represented. Six participants (31.6%) developed chronic pain more than ten years after completing cancer treatment (range 0-25 years). Five themes were generated which highlighted the experience of chronic pain after cancer treatment for cancer survivors: 1) 'Hear me… believe me…. Please'. Survivors felt that they had not been listened to when they tried to talk about their chronic pain after cancer treatment, nor at times, believed. 2) 'Expectation versus reality'. Survivors had anticipated returning to pre cancer quality of life yet living in chronic pain prevented them from doing so. 3) 'They don't understand…. We don't understand'. Cancer survivors did not feel informed or prepared for the risk or reality of chronic pain after cancer treatment and this compounded the difficulties of coping with and managing their pain. They felt health care professionals lacked knowledge and understanding of chronic pain after cancer. 4) 'Negotiating the maze'. Cancer survivors encountered unclear and limited pathways for support, often bouncing from one support team to another. Identifying and accessing services was a challenge, and the responsibility of this was often left to the survivor. 5) 'Validate my pain, validate me'. Palpable relief and benefit was felt when health care professionals diagnosed and acknowledged their chronic pain after cancer treatment. CONCLUSIONS: Cancer survivors can feel ill prepared for the risk of chronic pain after cancer treatment and can experience challenges accessing support from healthcare professionals and clinical services.

'A good decision is the one that feels right for me': Codesign with patients to inform theoretical underpinning of a decision aid website.

INTRODUCTION: Patient decision aids (PtDA) complement shared decision-making with healthcare professionals and improve decision quality. However, PtDA often lack theoretical underpinning. We are codesigning a PtDA to help people with increased genetic cancer risks manage choices. The aim of an innovative workshop described here was to engage with the people who will use the PtDA regarding the theoretical underpinning and logic model outlining our hypothesis of how the PtDA would lead to more informed decision-making. METHODS: Short presentations about psychological and behavioural theories by an expert were interspersed with facilitated, small-group discussions led by patients. Patients were asked what is important to them when they make health decisions, what theoretical constructs are most meaningful and how this should be applied to codesign of a PtDA. An artist created a visual summary. Notes from patient discussions and the artwork were analysed using reflexive thematic analysis. RESULTS: The overarching theme was: It's personal. Contextual factors important for decision-making were varied and changed over time. There was no one 'best fit' theory to target support needs in a PtDA, suggesting an inductive, flexible framework approach to programme theory would be most effective. The PtDA logic model was revised based on patient feedback. CONCLUSION: Meaningful codesign of PtDA including discussions about the theoretical mechanisms through which they support decision-making has the potential to lead to improved patient care through understanding the intricately personal nature of health decisions, and tailoring content and format for holistic care. PATIENT CONTRIBUTION: Patients with lived experience were involved in codesign and coproduction of this workshop and analysis as partners and coauthors. Patient discussions were the primary data source. Facilitators provided a semi-structured guide, but they did not influence the patient discussions or provide clinical advice. The premise of this workshop was to prioritise the importance of patient lived experience: to listen, learn, then reflect together to understand and propose ideas to improve patient care through codesign of a PtDA.

CARE: Protocol of a randomised trial evaluating the feasibility of preoperative intentional weight loss to support postoperative recovery in patients with excess weight and colorectal cancer.

AIM: Excess weight increases the risk of morbidity following colorectal cancer surgery. Weight loss may improve morbidity, but it is uncertain whether patients can follow an intensive weight loss intervention while waiting for surgery and there are concerns about muscle mass loss. The aim of this trial is to assess the feasibility of intentional weight loss in this setting and determine progression to a definitive trial. METHODS: CARE is a prospectively registered, multicentre, feasibility, parallel, randomised controlled trial with embedded evaluation and optimisation of the recruitment process. Participants with excess weight awaiting curative colorectal resection for cancer are randomised 1:1 to care as usual or a low-energy nutritionally-replete total diet replacement programme with weekly remote behavioural support by a dietitian. Progression criteria will be based on the recruitment, engagement, adherence, and retention rates. Data will be collected on the 30-day postoperative morbidity, the typical primary outcome of prehabilitation trials. Secondary outcomes will include, among others, length of hospital stay, health-related quality of life, and body composition. Qualitative interviews will be used to understand patients' experiences of and attitudes towards trial participation and intervention engagement and adherence. CONCLUSION: CARE will evaluate the feasibility of intensive intentional weight loss as prehabilitation before colorectal cancer surgery. The results will determine the planning of a definitive trial.

Maintaining long-term physical activity after cancer: a conceptual framework to inform intervention development.

PURPOSE: This paper describes a conceptual framework of maintenance of physical activity (PA) and its application to future intervention design. METHODS: Evidence from systematic literature reviews and in-depth (N = 27) qualitative interviews with individuals with cancer were used to develop a conceptual framework of long-term physical activity behaviour. Determinants of long-term PA were listed and linked with domains of the Theoretical Domains Framework which in turn were linked to associated behaviour change techniques (BCTs) and finally to proposed mechanisms of action (MoA). RESULTS: The conceptual framework is presented within the context of non-modifiable contextual factors (such as demographic and material resources) and in the presence of learnt and adapted behavioural determinants of skills, competence and autonomous motivation that must be established as part of the initiation of physical activity behaviour. An inventory of 8 determinants of engagement in long-term PA after cancer was developed. Clusters of BCTs are presented along with proposed MoA which can be tested using mediation analysis in future trials. CONCLUSION: Understanding the processes of PA maintenance after cancer and presentation of implementable and testable intervention components and mechanisms of action to promote continued PA can inform future intervention development. IMPLICATIONS FOR CANCER SURVIVORS: This resource can act as a starting point for selection of intervention components for those developing future interventions. This will facilitate effective support of individuals affected by cancer to maintain PA for the long term.

Patient decision support resources inform decisions about cancer susceptibility genetic testing and risk management: a systematic review of patient impact and experience.

Background: Patients with genetic cancer susceptibility are presented with complex management options involving difficult decisions, for example about genetic testing, treatment, screening and risk-reducing surgery/medications. This review sought to explore the experience of patients using decision support resources in this context, and the impact on decision-making outcomes. Methods: Systematic review of quantitative, qualitative and mixed-methods studies involving adults with or without cancer who used a decision support resource pre- or post-genetic test for any cancer susceptibility. To gather a broad view of existing resources and gaps for development, digital or paper-based patient resources were included and not limited to decision aids. Narrative synthesis was used to summarise patient impact and experience. Results: Thirty-six publications describing 27 resources were included. Heterogeneity of resources and outcome measurements highlighted the multiple modes of resource delivery and personal tailoring acceptable to and valued by patients. Impact on cognitive, emotional, and behavioural outcomes was mixed, but mainly positive. Findings suggested clear potential for quality patient-facing resources to be acceptable and useful. Conclusions: Decision support resources about genetic cancer susceptibility are likely useful to support decision-making, but should be co-designed with patients according to evidence-based frameworks. More research is needed to study impact and outcomes, particularly in terms of longer term follow-up to identify whether patients follow through on decisions and whether any increased distress is transient. Innovative, streamlined resources are needed to scale up delivery of genetic cancer susceptibility testing for patients with cancer in mainstream oncology clinics. Tailored patient-facing decision aids should also be made available to patients identified as carriers of a pathogenic gene variant that increases future cancer risks, to complement traditional genetic counselling. Systematic Review Registration: https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42020220460, identifier: CRD42020220460.

To disclose or not to disclose: an ethnographic exploration of factors contributing to the (non) disclosure of Ghanaian women's breast cancer diagnosis to social networks.

BACKGROUND: Although there may be theoretical support linking positive health outcomes with cancer disclosure to social networks, women from contexts such as Ghana where cancer is not openly talked about may have concerns around breast cancer disclosure. Women may not be able to share their experiences about their diagnosis, which may prevent them from receiving support. This study aimed to obtain the views of Ghanaian women diagnosed with breast cancer about factors contributing to (non) disclosure. METHODS: This study is based on secondary findings from an ethnographic study that employed participant observation and semi-structured face to face interviews. The study was conducted at a breast clinic in a Teaching Hospital in southern Ghana. 16 women diagnosed with breast cancer (up to stage 3); five relatives nominated by these women and ten healthcare professionals (HCPs) participated in the study. Factors contributing to breast cancer (non) disclosure were explored. Data were analysed using a thematic approach. RESULTS: The analysis indicated that most of the women and family members were very reticent about breast cancer disclosure and were secretive with distant relatives and wider social networks. Whilst remaining silent about their cancer diagnosis helped women protect their identities, prevented spiritual attack, and bad advice, the need for emotional and financial support for cancer treatment triggered disclosure to close family, friends, and pastors. Some women were discouraged from persevering with conventional treatment following disclosure to their close relatives. CONCLUSIONS: Breast cancer stigma and fears around disclosure hindered women from disclosing to individuals in their social networks. Women disclosed to their close relatives for support, but this was not always safe. Health care professionals are well placed to explore women's concerns and facilitate disclosure within safe spaces to enhance engagement with breast cancer care services.

Temporal dynamics of soil fungi in a pyrodiverse dry-sclerophyll forest.

Fire is a major evolutionary and ecological driver that shapes biodiversity in forests. While above-ground community responses to fire have been well-documented, those below-ground are much less understood. However, below-ground communities, including fungi, play key roles in forests and facilitate the recovery of other organisms after fire. Here, we used internal transcribed spacer (ITS) meta-barcoding data from forests with three different times since fire [short (3 years), medium (13-19 years) and long (>26 years)] to characterize the temporal responses of soil fungal communities across functional groups, ectomycorrhizal exploration strategies and inter-guild associations. Our findings indicate that fire effects on fungal communities are strongest in the short to medium term, with clear distinctions between communities in forests with a short time (3 years) since fire, a medium time (13-19 years) and a long time (>26 years) since fire. Ectomycorrhizal fungi were disproportionately impacted by fire relative to saprotrophs, but the direction of the response varied depending on morphological structures and exploration strategies. For instance, short-distance ectomycorrhizal fungi increased with recent fire, while medium-distance (fringe) ectomycorrhizal fungi decreased. Further, we detected strong, negative inter-guild associations between ectomycorrhizal and saprotrophic fungi but only at medium and long times since fire. Given the functional significance of fungi, the temporal changes in fungal composition, inter-guild associations and functional groups after fire demonstrated in our study may have functional implications that require adaptive management to curtail.

The role of social networks in the self-management support for young women recently diagnosed with breast cancer.

It is widely acknowledged that social network support plays an important role in the quality of life and illness management of breast cancer survivors. However, the factors and processes that enable and sustain such support are less well understood. This paper reports baseline findings from a prospective UK national cohort of 1,202 women with breast cancer (aged <50 years at diagnosis), recruited before starting treatment, conducted in 2016-2019. Descriptive, univariate and multivariate regression analyses explored associations between the individual, and network member characteristics, and the type of support provided. Social network members provided a substantial level of illness-related, practical and emotional support. Highest contribution was provided by friends, followed by close family members. The social network members of women who did not have a partner provided a higher level of support than those in networks with a partner. Women without higher education were more reliant on close family members than those with higher education, and this was more so for women without a partner. Women with higher education without a partner were more reliant on friends and were overall best supported. Women without higher education who did not have a partner were overall least well supported. They had much smaller networks, were highly reliant on close family members, and on high level contributions from all network members. There is a need to develop network-based interventions to support people with a cancer diagnosis, prioritising support for the groups identified as most at risk. Interventions that support engagement with existing network members during treatment, and those that help extend such networks after treatment, are likely to be of benefit. A network perspective can help to develop tailored support and interventions by recognising the interactions between network and individual level processes.

Dynamics of Affective Reactivity during Mother-Daughter Interactions: The Impact of Adolescent Non-Suicidal Self-Injury.

Non-suicidal self-injury (NSSI) is an alarming public health concern that is particularly widespread among adolescents. The current study examined affective responses during mother-daughter interactions in adolescent girls with and without a history of NSSI. Participants were 60 girls aged 13-17 with (n = 27) and without (n = 33) a history of NSSI and their mothers. Adolescents and their mothers completed two interaction tasks: one positive and one negative. During these interactions, facial affect was assessed via electromyography (EMG). Results of Actor-Partner Interdependence Modeling (APIM) revealed several intra- and interpersonal disruptions in affect during both tasks among dyads in which the adolescent had an NSSI history. Findings suggest deficits in both self- and co-regulation of facial affect during mother-daughter interactions involving dyads in which the adolescents reports NSSI. Ultimately, if replicated and extended in longitudinal research, these disruptions may prove to be promising targets of intervention to reduce risk for future NSSI in adolescent girls.

A randomised controlled trial of a digital intervention (Renewed) to support symptom management, wellbeing and quality of life in cancer survivors.

BACKGROUND: Many cancer survivors following primary treatment have prolonged poor quality of life. AIM: To determine the effectiveness of a bespoke digital intervention to support cancer survivors. DESIGN: Pragmatic parallel open randomised trial. SETTING: UK general practices. METHODS: People having finished primary treatment (<= 10 years previously) for colo-rectal, breast or prostate cancers, with European-Organization-for-Research-and-Treatment-of-Cancer QLQ-C30 score <85, were randomised by online software to: 1)detailed 'generic' digital NHS support ('LiveWell';n=906), 2) a bespoke complex digital intervention ('Renewed';n=903) addressing symptom management, physical activity, diet, weight loss, distress, or 3) 'Renewed-with-support' (n=903): 'Renewed' with additional brief email and telephone support. RESULTS: Mixed linear regression provided estimates of the differences between each intervention group and generic advice: at 6 months (primary time point: n's respectively 806;749;705) all groups improved, with no significant between-group differences for EORTC QLQ-C30, but global health improved more in both intervention groups. By 12 months there were: small improvements in EORTC QLQ-C30 for Renewed-with-support (versus generic advice: 1.42, 95% CIs 0.33-2.51); both groups improved global health (12 months: renewed: 3.06, 1.39-4.74; renewed-with-support: 2.78, 1.08-4.48), dyspnoea, constipation, and enablement, and lower NHS costs (generic advice £265: in comparison respectively £141 (153-128) and £77 (90-65) lower); and for Renewed-with-support improvement in several other symptom subscales. No harms were identified. CONCLUSION: Cancer survivors quality of life improved with detailed generic online support. Robustly developed bespoke digital support provides limited additional short term benefit, but additional longer term improvement in global health enablement and symptom management, with substantially lower NHS costs.

Person-based co-design of a decision aid template for people with a genetic predisposition to cancer.

Background: People with genetic predispositions to cancer are faced with complex health decisions about managing their risk. Decision aids can support informed, values-based decisions, alongside shared decision-making with a clinician. Whilst diagnoses of genetic predispositions to cancer are increasing, there is no scalable decision aid to support these people. This paper presents an accessible, relevant decision aid template which can be adapted for different predispositions to cancer. Methods: The decision aid template was co-developed with 12 patients affected by cancer and informed by empirical and theoretical literature. In addition, consultations were conducted with a further 19 people with Lynch syndrome; a specific genetic predisposition to cancer. Clinical stakeholders were consulted regularly. Coulter's framework for decision aid development guided the process, and these activities were complemented by the International Patient Decision Aid Standards, and the latest evidence on communicating risk in decision aids. Programme theory was developed to hypothesise how the decision aid would support decision-making and contextual factors which could influence the process. Guiding principles co-developed with the patient panel described how the decision aid could effectively engage people. Results: The in-depth co-design process led to the identification of five core components of an accessible decision aid template for people with a genetic predisposition to cancer: defining the decision; option grid showing implications of each option; optional further details such as icon arrays to show tailored risk and personal narratives; values clarification activity; and a summary to facilitate discussion with a clinician. Specific guidance was produced describing how to develop each component. The guiding principles identified that the decision aid template needed to promote trust, reduce distress, and be comprehensive, personally relevant and accessible in order to engage people. Conclusion: Adopting a co-design process helped ensure that the decision aid components were relevant and accessible to the target population. The template could have widespread application through being adapted for different genetic predispositions. The exact content should be co-designed with people from diverse backgrounds with lived experience of the specific predisposition to ensure it is as useful, engaging and relevant as possible.

Acceptability and usability of a patient portal for men with prostate cancer in follow-up care.

Background: A stratified approach to cancer follow-up care, including remote monitoring and supported self-management for suitable patients, is increasingly recommended. Patient portals can facilitate such an approach, allowing access to results and information. There is limited understanding of the use of portals within this context. Aim: This paper reports the acceptability and usability of a patient portal developed to facilitate a remote monitoring and supported self-management follow-up care programme for men with prostate cancer. Methods: A mixed methods evaluation, including analysis of service utilisation data, a survey of users' experiences and satisfaction, and telephone interviews of non-users' views and experiences. Results: Sixty percent of eligible patients registered to use the portal. Of these, 37% logged in at least once over a 6-month period and 52% over 12 months. Satisfaction among these users was reasonably high. Use of the portal in general was rated as very easy or easy by over 70% of respondents, and the majority felt the portal had helped them manage their condition in various ways. However, a large minority (40%) did not use the portal, with reasons for non-use including lack of access to computing facilities and lack of computer skills. Those who were older were less likely to register to use the portal. Conclusions: A large proportion of participants found the patient portal acceptable and easy to use. Reasons for non-use should be addressed in order to maximise system efficiencies and minimise inequalities in care, and the needs of specific groups should be taken into account.

Plant rarity in fire-prone dry sclerophyll communities.

Understanding the responses of rare species to altered fire disturbance regimes is an ongoing challenge for ecologists. We asked: are there associations between fire regimes and plant rarity across different vegetation communities? We combined 62 years of fire history records with vegetation surveys of 86 sites across three different dry sclerophyll vegetation communities in Booderee National Park, south-east Australia to: (1) compare associations between species richness and rare species richness with fire regimes, (2) test whether fire regimes influence the proportion of rare species present in an assemblage, and (3) examine whether rare species are associated with particular fire response traits and life history. We also sought to determine if different rarity categorisations influence the associations between fire regimes and plant rarity. We categorised plant rarity using three standard definitions; species' abundance, species' distribution, and Rabinowitz's measure of rarity, which considers a species' abundance, distribution and habitat specificity. We found that total species richness was negatively associated with short fire intervals but positively associated with time since fire and fire frequency in woodland communities. Total species richness was also positively associated with short fire intervals in forest communities. However, rare species richness was not associated with fire when categorised via abundance or distribution. Using Rabinowitz's measure of rarity, the proportion of rare species present was negatively associated with fire frequency in forest communities but positively associated with fire frequency in woodland communities. We found that rare species classified by all three measures of rarity exhibited no difference in fire response traits and serotiny compared to species not classified as rare. Rare species based on abundance differed to species not classified as rare across each life history category, while species rare by distribution differed in preferences for seed storage location. Our findings suggest that species categorised as rare by Rabinowitz's definition of rarity are the most sensitive to the effects of fire regimes. Nevertheless, the paucity of responses observed between rare species with fire regimes in a fire-prone ecosystem suggests that other biotic drivers may play a greater role in influencing the rarity of a species in this system.