Search

Communication is a core component of effective healthcare that impacts many patient and doctor outcomes, yet is complex and challenging to both analyse and teach. Human-based coding and audit systems are time-intensive and costly; thus, there is considerable interest in the application of artificial intelligence to this topic, through machine learning using both supervised and unsupervised learning algorithms. In this article we introduce health communication, its importance for patient and health professional outcomes, and the need for rigorous empirical data to support this field. We then discuss historical interaction coding systems and recent developments in applying artificial intelligence (AI) to automate such coding in the health setting. Finally, we discuss available evidence for the reliability and validity of AI coding, application of AI in training and audit of communication, as well as limitations and future directions in this field. In summary, recent advances in machine learning have allowed accurate textual transcription, and analysis of prosody, pauses, energy, intonation, emotion and communication style. Studies have established moderate to good reliability of machine learning algorithms, comparable with human coding (or better), and have identified some expected and unexpected associations between communication variables and patient satisfaction. Finally, application of artificial intelligence to communication skills training has been attempted, to provide audit and feedback, and through the use of avatars. This looks promising to provide confidential and easily accessible training, but may be best used as an adjunct to human-based training. • Artificial intelligence (AI) applied to health professional-patient communication enables efficient audit and feedback. • Very recent advances have increased the ability of AI to encode the complexity in human interaction. • AI can now encode words as well as a person does, as well as emotion and non-verbal aspects of communication. • AI coding has been shown to be moderately to substantially reliable. • Translation into the real world has yet to be demonstrated. [ABSTRACT FROM AUTHOR]

Copyright of Journal of Medical Imaging & Radiation Sciences is the property of Elsevier B.V. and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Neoadjuvant systemic therapy (NAST) is used for large operable or highly proliferative breast cancers. It is not known whether psychological outcomes differ according to the treatment sequence (chemotherapy or surgery first) or tumour response. This was a planned analysis of a multi-institutional single arm longitudinal study of patients considering NAST for operable breast cancer. Participants completed patient reported outcome questionnaires before and after the decision about NAST, between chemotherapy and surgery, and 12 months after diagnosis. Fifty-nine women enrolled. Fourteen of 51 (28%) who received NAST experienced pathological complete response (pCR). Patients who had surgery first (n = 7) had higher baseline anxiety, and a greater decrease in anxiety at 12 months follow up, compared with patients who received NAST (n = 50) (a decrease from baseline of 34 pts vs 17 points; p = 0.033). Distress declined at a similar rate in surgery first and NAST groups. Mean satisfaction with decision score post-decision was significantly lower in the adjuvant group compared with NAST (22 vs 26, p = 0.02). No differences were seen between patients with pCR vs residual cancer in: distress, anxiety, satisfaction with decision, fear of progression, and decision regret. Most patients in this study proceeded with NAST when their surgeon offered it as an option. This exploratory analysis suggests that patients who chose surgery first tended to be more anxious, and had lower satisfaction with their decision, than those who had NAST. In patients who had NAST, lack of pCR does not appear to correlate with adverse psychological outcomes. • Psychological outcomes from neoadjuvant therapy for breast cancer are unknown. • We questioned 59 women about anxiety, distress, and fear of progression or recurrence. • Outcomes were compared according to response to chemotherapy and scheduling. • Anxiety and distress declined over time. • Fear of progression or recurrence were no different in responders or non-responders. [ABSTRACT FROM AUTHOR]

Highlights • One in three patients (30.7%) had a distress score clinically problematic. • Low health literacy was frequent and associated with psychological distress. • Difficulties in asking physician's questions were associated with higher distress. • Low satisfaction with information about MDS at disclosure also increased distress. Abstract MDS is a complex and potentially severe disease which can trigger psychological distress. A lack of information received and understood about MDS may also arouse feelings of distress. Low health literacy (HL) might play a role particularly among older patients. Our aim was to assess MDS-related distress and to study the factors associated with it, including medical and non-medical factors such as HL. A self-administered questionnaire was mailed to all members of French and Australian patients' national MDS associations. Data of 280 patients were analysed. A majority of patient (59.5%) reported low functional HL and 50% reported regular difficulties in asking physicians questions. Distress was not modified by gender, awareness of increased risk of developing leukaemia or MDS characteristics. French patients had a higher mean IES score (adjusted β = 5.9, p = 0.004) compared to Australian patients. Poor satisfaction with information provided about MDS, lower functional HL and difficulties in asking physician's questions were also independently associated with distress. MDS-related distress seems more related to HL and communication with physicians than to MDS characteristics. More efforts are needed to improve health literacy, tailor information for MDS patients and support them psychologically in order to improve their emotional well-being. [ABSTRACT FROM AUTHOR]

This study explored health professionals' (HPs') experiences of interacting with family care-givers (FCs), and the strategies they employ during these interactions. Qualitative methods involved audio-taped and transcribed in-depth semi-structured interviews with 21 HPs (doctors, nurses) from the geriatric wards of two tertiary hospitals. Framework methods were used to analyze data. Seven main themes emerged: Variation in family behaviours; FCs face many challenges; Psychosocial factors influence FCs' behaviours; Attitudes, competing responsibilities and lack of resources influencing HPs' strategies and behaviours; Strategies employed by HPs to improve communication; HPs' self-care strategies; Impact of interactions on HPs and the healthcare system. Inter-relationships between the themes were then integrated into a three-part model. This study offered insights into HPs' perspectives, experiences, and behaviours in geriatric consultations where FCs are present. Findings emphasised the need for HP training programs to improve communication and collaboration between HPs, patients, and FCs. [ABSTRACT FROM AUTHOR]

Background: Research has begun to focus on whether Advance Care Planning (ACP) has the capacity to influence care, and to examine whether ACP can be effective in meeting patients' wishes at the end of their lives. Little attention has been paid, however, to the validity and clinical relevance of existing measures.Methods: A search of Medline and CINHAL identified ACP studies measuring concordance between end-of-life (EoL) preferences and the care received. Databases were searched from 2000 to August 2016. We developed a checklist to evaluate the quality of included studies. Data were collected on the proportion of patients who received concordant care, extracted from manuscript tables or calculated from the text.Outcomes: Of 2941 papers initially identified, nine eligible studies were included. Proportions of patients who received concordant care varied from 14% to 98%. Studies were heterogeneous and methodologically poor, with limited attention paid to bias/external validity. Studies varied with regards to design of measures, the meaning of relevant terms like "preference" "EoL care" and "concordance," and the completeness of reported data.Conclusion: Methodological variations and weaknesses compromise the validity of study results, and prevent meaningful comparisons between studies or synthesis of the results. Effectively evaluating whether ACP interventions enhance a patient's capacity to receive the care they want requires harmonization of research. This demands standardization of methods across studies, validating of instruments, and consensus based on a consistent conceptual framework regarding what constitutes a meaningful outcome measure. [ABSTRACT FROM AUTHOR]

Background Patients are often not given the information needed to understand their prognosis and make informed treatment choices, with many consequently experiencing less than optimal care and quality-of-life at end-of-life. Objectives To evaluate the efficacy of a nurse-facilitated communication support program for patients with advanced, incurable cancer to assist them in discussing prognosis and end-of-life care. Design A parallel-group randomised controlled trial design was used. Settings This trial was conducted at six cancer treatment centres affiliated with major hospitals in Sydney, Australia. Participants 110 patients with advanced, incurable cancer participated. Methods The communication support program included guided exploration of a question prompt list, communication challenges, patient values and concerns and the value of discussing end-of-life care early, with oncologists cued to endorse question-asking and question prompt list use. Patients were randomised after baseline measure completion, a regular oncology consultation was audio-recorded and a follow-up questionnaire was completed one month later. Communication, health-related quality-of-life and satisfaction measures and a manualised consultation-coding scheme were used. Descriptive, Mixed Modelling and Generalised Linear Mixed Modelling analyses were conducted using SPSS version 22. Results Communication support program recipients gave significantly more cues for discussion of prognosis, end-of-life care, future care options and general issues not targeted by the intervention during recorded consultations, but did not ask more questions about these issues or overall. Oncologists’ question prompt list and question asking endorsement was inconsistent. Communication support program recipients’ self-efficacy in knowing what questions to ask their doctor significantly improved at follow-up while control arm patients’ self-efficacy declined. The communication support program did not impact patients’ health-related quality-of-life or the likelihood that their health information or shared decision-making preferences would be met. Satisfaction with the communication support program was high. Conclusions Given the importance of clarifying prognostic expectations and end-of-life care wishes in the advanced cancer context, the communication support program appears to be an effective and well-received solution to encourage early information seeking related to these issues though, its long-term impact remains unclear. The manualised nature of the intervention, designed with existing clinical staff in mind, may make it suited for implementation in a clinical setting, though additional work is needed to identify why question asking was unaffected and establish its impact later in the illness trajectory. [ABSTRACT FROM AUTHOR]

Objectives Contralateral prophylactic mastectomy (CPM) reduces the risk of contralateral breast cancer (BC) following unilateral BC, but may not increase survival in BRCA1/2 mutation negative women. Despite this, and the risk for adverse physical and psychological impact, uptake is increasing in BRCA1/2 mutation negative women. We aimed to quantify the degree of reduction in lifetime contralateral BC risk women required to justify CPM, and to explore demographic, disease and psychosocial predictors of preferences using Protection Motivation Theory (PMT) as a theoretical framework. Reasoning behind preferences was also examined. Materials and methods 388 women previously diagnosed with unilateral BC, of negative or unknown BRCA1/2 status, were recruited from an advocacy group research database. Two hypothetical risk trade-off scenarios were used to quantify the reduction in lifetime contralateral BC risk that women judged necessary to justify CPM, using a 5% and 20% baseline. Demographic, disease and PMT measures were assessed using a questionnaire. Results Most women required their risk to be more than halved from a 5% or 20% baseline to justify CPM. Polarised preferences were also common, with some women consistently accepting or refusing CPM independent of risk/benefit trade-offs. Preferences were associated with coping self-efficacy and having a prior CPM. Explanations for judging CPM worthwhile included reducing or eliminating contralateral BC risk, attaining breast symmetry and reducing worry. Conclusion Risk-reduction preferences were highly variable. Decisive factors in women's preferences for CPM related to clinical, psychological and cosmetic outcomes, but not to demographic or disease characteristics. [ABSTRACT FROM AUTHOR]

Purpose Oncology health professionals (HPs) are increasingly required to care for patients from minority backgrounds. Yet many HPs have not had formal training in how to communicate effectively in culturally diverse settings. More information is needed about the challenges that oncology HPs face in communicating with minority patients to inform the content of formal training programs. This qualitative study aimed to identify oncology nurses' and oncologists' individual experiences and challenges in communicating with patients from minority backgrounds. Method Thirty-eight oncology HPs (21 oncology nurses, 12 medical oncologists, and 5 radiation oncologists) were interviewed individually or in focus groups about their experiences communicating with patients from minority backgrounds. The interviews were audio taped and analysed thematically. Results The majority of participants (82%) reported varying degrees of uncertainty and discomfort regarding working with minority patients, with many barriers to communication encountered. Participants perceived that minority patients received less emotional support than majority group patients. They experienced challenges in balancing beliefs about patient autonomy with cultural differences regarding the role of the family. Strategies employed by participants to facilitate interactions included: modifying speech, taking more time in consultations, rapport building, and using nonverbal techniques. Conclusions Oncology HPs encounter many linguistic and cultural barriers when communicating with minority patients. They need formal training tailored to developing culturally competent communication. Oncology nurses and oncologists could benefit from formal communication skills training focused upon cultural competence during their career development programs. [ABSTRACT FROM AUTHOR]

Background: Of the available treatment options for attention-deficit/hyperactivity disorder (ADHD), the use of medications remains the most controversial and it is often difficult for parents to make decisions about treatment. Provision of relevant, reliable information about treatment during consultations may help address parents' concerns about treatment options. Question prompt lists are structured lists of disease and treatment-specific questions intended for use by patients during consultations to encourage communication with clinicians. They may prove useful in empowering parents to ask questions during consultations and to make informed decisions about treatments for ADHD.Objectives: To evaluate the acceptability and usefulness of a question prompt list (QPL) for attention-deficit/hyperactivity disorder (ADHD) during consultations between parents of diagnosed children and their pediatricians.Methods: Parents of children recently diagnosed with ADHD (n = 17) received a copy of the QPL 7 days before their child's appointment and completed questionnaires before and after their consultations to elicit: satisfaction with the consultation and QPL; situational anxiety levels; achievement of decision-making and information preferences. Pediatricians (n = 3) completed questionnaires after each consultation to determine the impact of the QPL on consultation flow and to ascertain their willingness to incorporate the QPL into their practice.Results: All parents reported that the QPL helped them to ask more questions, was easy to understand and would be useful to them in future. After receiving the QPL and seeing the pediatrician, parents' anxiety decreased significantly. All described their decision-making roles as 'just right' and were satisfied with the information obtained during their consultations. All pediatricians agreed that the QPL was helpful for parents, made communication easier, and helped parents to initiate discussion about difficult topics. The QPL was not found to impede flow of the consultation. All agreed QPL provision was feasible as part of routine clinical care.Conclusions: The QPL received strong support from parents and pediatricians and may be a useful tool in facilitating communication and shared decision-making in this setting. The findings warrant further investigation in a larger randomized controlled study. [ABSTRACT FROM AUTHOR]

Qualitative research examining healthcare experiences and needs of people with advanced (metastatic or recurrent) colorectal cancer CRC-A is limited. This study aimed to fill this gap in CRC-A survivors treated with surgical or palliative chemotherapy, through a qualitative study. Australian adults treated for CRC-A were recruited 0.5–2 years post-surgery or post-diagnosis of CRC-A (for palliative chemotherapy groups). Semi-structured telephone interviews, analysed via framework analysis, explored healthcare experiences. Demographic, clinical, and quality of life data characterised the sample and informed framework analyses. Data was compared against the Institute of Medicine's framework for quality healthcare. Interviews from 38 participants (22 female) of median age 59 years (range 27–84) revealed six overarching themes relating to the safety , effectiveness , timeliness , patient-centredness , efficiency , and equity of CRC-A care: 1) Early experiences influence later perceptions ; 2) Trusting the system, trusting the professionals ; 3) The benefits of multidisciplinary care co-ordination; 4) Feeling lost in follow-up ; 5) Whose role is it anyway? Gaps in responsibility for survivorship care ; and 6) Useful or useless? Perceptions of psychosocial support. Healthcare systems for CRC-A can be improved through delivery of repeated information, upskilling general practitioners and/or implementing written survivorship care plans or survivorship clinics, to ensure quality healthcare. • Advanced colorectal cancer survivors may feel lost in follow-up. • There is confusion about which doctor is responsible for survivorship challenges. • Repeated information delivery may help survivors to feel supported and informed. • Multidisciplinary care can be beneficial, yet burdensome for survivors. • GPs can provide quality care co-ordination following upskilling and training. [ABSTRACT FROM AUTHOR]

Objective Conduct a systematic review of quantitative and qualitative studies exploring patient reported factors and psychological variables influencing the decision to have contralateral prophylactic mastectomy (CPM), and satisfaction with CPM, in women with early stage breast cancer. Methods Studies were identified via databases: Medline, CINAHL, Embase and PsycINFO. Data were extracted by one author and crosschecked by two additional authors for accuracy. The quality of included articles was assessed using standardised criteria by three authors. Results Of the 1346 unique citations identified, 17 were studies that met the inclusion criteria. Studies included were primarily cross-sectional and retrospective. No study utilised a theoretical framework to guide research and few studies considered psychological predictors of CPM. Fear of breast cancer was the most commonly cited reason for CPM, followed by cosmetic reasons such as desire for symmetry. Overall, women appeared satisfied with CPM, however, adverse/diminished body image, poor cosmetic result, complications, diminished sense of sexuality, emotional issues and perceived lack of education regarding alternative surveillance/CPM efficacy were cited as reasons for dissatisfaction. Conclusion Current literature has begun to identify patient-reported reasons for CPM; however, the relative importance of different factors and how these factors relate to the process underlying the decision to have CPM are unknown. Of women who considered CPM, limited information is available regarding differences between those who proceed with or ultimately decline CPM. [ABSTRACT FROM AUTHOR]

Myelodysplastic syndromes (MDS) can evolve to acute myeloid leukaemia (AML) in approximately 30% of cases. Knowing their AML risk is important for patients because it might impact adherence to care and psychological health. The aim of this study was to evaluate the awareness of AML risk among MDS patients and to study the factors associated with this awareness. A self-administered questionnaire was mailed to all members of French and Australian patients’ national MDS associations. Data of 301 patients were analysed. Patients were satisfied with the information they had received, but 33.2% did not know that they had an increased risk of developing AML. Younger age, higher-risk MDS treatment, preferences for health-related information and satisfaction with information provided about treatment were the factors independently associated with awareness of AML risk. Compared to unaware patients, patients knowing their risk were more likely to participate in a hypothetical clinical trial (83.0% vs 72.4%, p = 0.043). More efforts are needed to provide more systematic information about AML risk to patients wishing to know it. More research is needed to study if increasing awareness can lead to more active engagement of MDS patients in their care and can increase the rate of clinical trial participation. [ABSTRACT FROM AUTHOR]

Purpose To assess the prevalence of burnout amongst Australian cancer nurses as well as investigate the systemic and individual factors associated with burnout, including training and supervision for nurses in psychosocial care. Burnout amongst cancer nurses can have serious consequences for the individual nurse, the hospital and patients. Psychosocial care has been demonstrated in many studies to reduce distress in cancer patients; however, previous studies have suggested that providing psychosocial care can be stressful if nurses feel they lack appropriate training. Psychosocial skill training and supervision may be a way of improving job satisfaction and reducing burnout amongst nurses. Method Two hundred and thirty cancer nurses were recruited between November 2010 and April 2011 and completed an online questionnaire. Results Burnout levels within this population were found to be below nursing norms. Adequacy of training and supervision, frequency of supervision and percentage of role spent managing psychosocial care were found to be associated with burnout. Workload, Control, Reward and Community were independent predictors of burnout, and nurses with a greater mismatch in these areas identified as having High levels of burnout. Conclusions Strategies to reduce burnout include providing cancer nurses with a varied and sustainable workload, awarding financial and social recognition of efforts and encouraging nurses to develop a sense of control over their work. Providing regular training and supervision in psychosocial care that is perceived to be adequate may also assist in reducing burnout. [ABSTRACT FROM AUTHOR]

Several complex treatment decisions may be offered to women with early stage breast cancer, about a range of treatments from different modalities including surgery, radiotherapy, and endocrine and chemotherapy. Decision aids can facilitate shared decision-making and improve decision-related outcomes. We aimed to systematically identify, describe and appraise the literature on treatment decision aids for women with early breast cancer, synthesise the data and identify breast cancer decisions that lack a decision aid. A prospectively developed search strategy was applied to MEDLINE, the Cochrane databases, EMBASE, PsycINFO, Web of Science and abstract databases from major conferences. Data were extracted into a pre-piloted form. Quality and risk of bias were measured using Qualsyst criteria. Results were synthesised into narrative format. Thirty-three eligible articles were identified, evaluating 23 individual treatment decision aids, comprising 13 randomised controlled trial reports, seven non-randomised comparative studies, eight single-arm pre-post studies and five cross-sectional studies. The decisions addressed by these decision aids were: breast conserving surgery versus mastectomy (+/− reconstruction); use of chemotherapy and/or endocrine therapy; radiotherapy; and fertility preservation. Outcome measures were heterogeneous, precluding meta-analysis. Decisional conflict decreased, and knowledge and satisfaction increased, without any change in anxiety or depression, in most studies. No studies were identified that evaluated decision aids for neoadjuvant systemic therapy, or contralateral prophylactic mastectomy. Decision aids are available and improved decision-related outcomes for many breast cancer treatment decisions including surgery, radiotherapy, and endocrine and chemotherapy. Decision aids for neoadjuvant systemic therapy and contralateral prophylactic mastectomy could not be found, and may be warranted. [ABSTRACT FROM AUTHOR]

Purpose Most women with unilateral breast cancer (BC) without BRCA1/2 gene mutations are at low risk of contralateral breast cancer (CBC). One CBC risk-management option is contralateral prophylactic mastectomy (CPM). While there is no evidence that CPM increases life-expectancy, its uptake is increasing. This study aimed to assess the validity of an extended social-cognition model, the Theory of Planned Behaviour (TPB), in predicting women's intentions to undergo CPM. Method Four hundred women previously treated for BC completed an online survey exploring demographic and disease factors, attitude, subjective norm, perceived behavioural control, anticipated regret, uncertainty avoidance, self-efficacy to not have CPM and intentions to undergo CPM in a common hypothetical decision-making scenario. Results The TPB uniquely explained 25.7% of intention variance. Greater anticipated regret, uncertainty avoidance and lower self-efficacy to cope with not having CPM were associated with stronger CPM intentions, explaining an additional 7.7%, 10.6% and 2.9% respectively, of variance over and above the TPB. Women who had undergone CPM, had not attended university, and had children reported stronger CPM intentions. Conclusions A holistic understanding of CPM decision-making appears to require consideration beyond CBC risk, demographics and disease characteristics, exploring women's expectations about CPM outcomes, others' opinions, and avoidance of emotionality and difficulties associated with not undergoing surgery. This study provides a theoretical basis from which the complexity of CPM decision-making may be understood, and from which resources for patients and treating staff may be developed to support women's informed decision-making aligning with their personal values. [ABSTRACT FROM AUTHOR]

Purpose Researchers have recently called for more work to be conducted on positive outcomes and head and neck cancer. The purpose of this study was to investigate the factors associated with posttraumatic growth in head and neck cancer caregivers. Methods and sample 197 carers were surveyed. A descriptive cross-sectional survey design was used. Results In multivariate analysis the following factors were statistically significantly associated with increased posttraumatic growth: social support, longer time since diagnosis, increased worry about cancer and increased financial stress and strain stemming from caring. Conclusions While HNC carers in the post-treatment phase of the illness trajectory can experience considerable psychological burdens, this study suggests that these burdens can lead some carers to experience growth and change and an expanded sense of themselves and their social worlds. Implications for nursing practice are discussed. [ABSTRACT FROM AUTHOR]

Objective: To identify and synthesise evidence for interventions targeting end-of-life communication.Methods: Database, reference list and author searches were conducted to identify evaluations of end-of-life communication-focussed interventions. Data were extracted, synthesised and QUALSYST quality analyses were performed.Results: Forty-five studies met inclusion criteria. Interventions targeted patients (n=6), caregivers (n=3), healthcare professionals (HCPs n=24) and multiple stakeholders (n=12). Interventions took various forms including communication skills training, education, advance care planning and structured practice changes. Substantial heterogeneity in study designs, outcomes, settings and measures was apparent and study quality was variable.Conclusion: A substantial number of end-of-life communication interventions have been evaluated. Interventions have particularly targeted HCPs in cancer settings, though patient, caregiver and multi-focal interventions have also been evaluated. While some interventions were efficacious in well-designed RCTs, most evidence was from less robust studies. While additional interventions targeting patients and caregivers are needed, multi-focal interventions may more effectively remove barriers to end-of-life communication.Practice Implications: Despite the limitations evident in the existing literature, healthcare professionals may still derive useful insights into effective approaches to end-of-life communication if appropriate caution is exercised. However, additional RCTs, implementation studies and cost-benefit analyses are required to bolster arguments for implementing and resourcing communication interventions. [ABSTRACT FROM AUTHOR]

Objective: The aim of this systematic literature review was to ascertain the patient perspective regarding the role of the doctor in the discussion of spirituality.Methods: We conducted a systematic search in ten databases from inception to January 2015. Eligible papers reported on original research including patient reports of discussion of spirituality in a medical consultation. Papers were separated into qualitative and quantitative for the purposes of analysis and quality appraisal with QualSyst. Papers were merged for the final synthesis.Results: 54 studies comprising 12,327 patients were included. In the majority of studies over half the sample thought it was appropriate for the doctor to enquire about spiritual needs in at least some circumstances (range 2.1-100%, median 70.5%), but patient preferences were not straightforward.Conclusion: While a majority of patients express interest in discussion of religion and spirituality in medical consultations, there is a mismatch in perception between patients and doctors regarding what constitutes this discussion and therefore whether it has taken place.Practice Implications: This review demonstrated that many patients have a strong interest in discussing spirituality in the medical consultation. Doctors should endeavor to identify which patients would welcome such conversations. [ABSTRACT FROM AUTHOR]

Myelodysplastic syndromes (MDS) are heterogeneous hematopoietic malignancies, often poorly understood by patients. Our aim was to obtain the views of MDS patients and family caregivers about a targeted question prompt list's (QPL) potential utility, and to evaluate their information needs. This targeted QPL, which included 53 suggested questions patients may ask onco-haematologists, was developed. A self-administered questionnaire eliciting feedback about the QPL and assessing its perceived usefulness was mailed to all members of Australian and French patients’ national MDS associations. Respectively, 301 MDS patients and 53 caregivers responded. Most (76.4%) were satisfied with the information provided at MDS disclosure but would have liked more information about prognosis (69.3%). Consistently, the three most useful questions focused on the risk of leukaemic transformation, the impact of treatment on chances of survival and the severity of the MDS. The majority (62.9%) of both patients and caregivers perceived the QPL as ‘ absolutely ’ useful, particularly those who would have preferred more information about prognosis (adjusted odds ratio = 2.3, 95% confidence interval [1.2–4.2], p = 0.008). Our proposal of intervention through a QPL was generally welcomed and could particularly address specific MDS patient needs regarding prognosis information. [ABSTRACT FROM AUTHOR]

This study assessed the psychological predictors of attitudes toward the return of germline genomic sequencing results in cancer patients and their biological relatives with a likely genetic basis for their cancer diagnosis, who completed a questionnaire prior to undergoing genomic sequencing. Of 602 probands and relatives, 94% of probands and 89% of relatives thought people would like to be informed about single-gene conditions for which there is prevention or treatment. Amongst relatives, this view was associated with higher perceived susceptibility and self-efficacy. Probands (66%) and relatives (59%) thought people would be interested in learning about single-gene conditions for which there is no prevention or treatment. Amongst probands, this view was associated with lower tolerance of uncertainty and amongst relatives with higher self-efficacy. Probands (92%) and relatives (90%) thought people would like to be informed about polygenic conditions that can have a major impact on health. Amongst probands this view was associated with lower perceived susceptibility of cancer recurrence, and amongst relatives, with higher perceived susceptibility and self-efficacy. Probands (86%) and relatives (86%) thought that people would like to be informed about polygenic conditions that can have a lower impact on health , and this view was associated with a lower perceived susceptibility of recurrence amongst probands. In conclusion, these findings show that individuals' attitudes about the return of results depend on the perceived utility of different types of tests. Therefore, individuals need to gain a clear understanding of test utility, and appropriate consent processes are required to achieve informed choices. [ABSTRACT FROM AUTHOR]

Modern treatments, including surgery and palliative chemotherapy without surgery, enable longer survival for people with advanced/recurrent colorectal cancer (CRC). Qualitative research comparing the physical and psychosocial outcomes of these different treatments is lacking. This study therefore aimed to explore and compare the physical and psychosocial challenges and survivorship experiences of people who receive different treatments for advanced CRC, through a qualitative study. Adults with CRC who have undergone treatment for advanced/recurrent CRC were recruited 0.5–2 years post-surgery or, for palliative chemotherapy participants, 0.5–2 years post-diagnosis of advanced CRC. Qualitative semi-structured telephone interviews, analysed via framework analysis, explored quality of life (QoL) experiences. Demographic, clinical, and QoL data (Functional Assessment of Cancer Therapy – Colorectal (FACT-C), Distress Thermometer) were collected to characterise the sample and inform the framework analysis. A diverse sample of 38 participants (22 female) participated, with ages ranging 27–84 (Median = 59), FACT-C 56–132 (Median = 102), and distress 0–10 (median = 3). Analysis of interviews revealed three overarching themes: 1) the overwhelming impact of protracted, complex illness ; 2) compounding and interacting effects of multiple treatments, impacts, and multimorbidity ; and 3) the long haul is unpredictable, bumpy, and wearing. These themes reveal that people with advanced CRC experience many challenges due to the complex nature of the illness, its treatment, and side effects. Survivors require continued multi-disciplinary supportive care throughout follow-up to manage survivorship challenges. Guideline-led survivorship care and routine monitoring of physical and psychosocial wellbeing throughout follow up is imperative to manage patient expectations and support advanced CRC survivors. • Survivors of advanced colorectal cancer experience many challenges in survivorship. • Pelvic exenteration survivors may require tailored care for their unique challenges. • Treatment complexity makes survival an unpredictable, bumpy, and wearing long haul. • We need tailored services to meet the needs of advanced colorectal cancer survivors. [ABSTRACT FROM AUTHOR]