Pain and its interference with daily living in relation to cancer: a comparative population-based study of 16,053 cancer survivors and 106,345 people without cancer.

BACKGROUND: Pain is a common, debilitating, and feared symptom, including among cancer survivors. However, large-scale population-based evidence on pain and its impact in cancer survivors is limited. We quantified the prevalence of pain in community-dwelling people with and without cancer, and its relation to physical functioning, psychological distress, and quality of life (QoL). METHODS: Questionnaire data from participants in the 45 and Up Study (Wave 2, n = 122,398, 2012-2015, mean age = 60.8 years), an Australian population-based cohort study, were linked to cancer registration data to ascertain prior cancer diagnoses. Modified Poisson regression estimated age- and sex-adjusted prevalence ratios (PRs) for bodily pain and pain sufficient to interfere with daily activities (high-impact pain) in people with versus without cancer, for 13 cancer types, overall and according to clinical, personal, and health characteristics. The relation of high-impact pain to physical and mental health outcomes was quantified in people with and without cancer. RESULTS: Overall, 34.9% (5,436/15,570) of cancer survivors and 31.3% (32,471/103,604) of participants without cancer reported bodily pain (PR = 1.07 [95% CI = 1.05-1.10]), and 15.9% (2,468/15,550) versus 13.1% (13,573/103,623), respectively, reported high-impact pain (PR = 1.13 [1.09-1.18]). Pain was greater with more recent cancer diagnosis, more advanced disease, and recent cancer treatment. High-impact pain varied by cancer type; compared to cancer-free participants, PRs were: 2.23 (1.71-2.90) for multiple myeloma; 1.87 (1.53-2.29) for lung cancer; 1.06 (0.98-1.16) for breast cancer; 1.05 (0.94-1.17) for colorectal cancer; 1.04 (0.96-1.13) for prostate cancer; and 1.02 (0.92-1.12) for melanoma. Regardless of cancer diagnosis, high-impact pain was strongly related to impaired physical functioning, psychological distress, and reduced QoL. CONCLUSIONS: Pain is common, interfering with daily life in around one-in-eight older community-dwelling participants. Pain was elevated overall in cancer survivors, particularly for certain cancer types, around diagnosis and treatment, and with advanced disease. However, pain was comparable to population levels for many common cancers, including breast, prostate and colorectal cancer, and melanoma.

Measuring female breast cancer survivors' concerns about late effects of treatment: initial development of the Concerns about Late Effects in Oncology Questionnaire (CLEO).

PURPOSE: While an increasing number of women are surviving breast cancer, survivors remain at risk of developing late effects. Late effects are long-term side effects which may emerge months to years after completing active treatment. Survivors may experience chronic worry and concern about the unpredictable and debilitating nature of late effects. This qualitative study aimed to explore the content validity of items included in the first patient-reported outcome measure (PROM) to quantify survivors' concerns about late effects: the Concerns about Late Effects in Oncology Questionnaire (CLEO). METHOD: Items included in the CLEO were informed by a literature review and consultation with expert stakeholders. Breast cancer survivors completed "think aloud" interviews to explore the perceived acceptability, relevance, clarity, and feasibility of the CLEO. Interviews were transcribed verbatim and analyzed using framework analysis. RESULTS: Twenty-eight participants were interviewed. Participants indicated the CLEO was acceptable, relevant to women's experiences of late effects, and easy to use and understand. Of the 55 proposed items, participants endorsed 33 items across six domains and suggested to include one additional item. CONCLUSIONS: These findings suggest the CLEO captured concerns relevant to breast cancer survivors and provides initial validation of items for inclusion in the CLEO. The CLEO may improve communication about late effects in clinical settings and prompt future research into evidence-based interventions for survivors. Future research should assess the relevance of the CLEO items to other cancer populations. The psychometric properties of the CLEO will be evaluated in future stages of questionnaire development.

Work: saviour or struggle? A qualitative study examining employment and finances in colorectal cancer survivors living with advanced cancer.

PURPOSE: Continuing employment or returning to work (RTW) as a cancer survivor can be meaningful and financially necessary, yet challenging. However, there is a lack of qualitative research on RTW experiences and financial wellbeing of people with advanced colorectal cancer (CRC-A). This study aimed to fill this gap. METHODS: Adults treated for CRC-A were recruited 0.5-2 years post-surgery (or post-diagnosis of CRC-A for palliative chemotherapy participants). Semi-structured telephone interviews, exploring RTW and finances, were subjected to framework analysis. Demographic, clinical, and quality of life data (FACT-C, Distress Thermometer, COST measure) were collected to characterise the sample and inform the framework analysis. RESULTS: Analysis of 38 interviews revealed five overarching themes: work as a struggle, work as my identity, work as my saviour, work as a financial necessity, and employer and colleague response. Many survivors with CRC-A desired to, and had the capacity to, continue work or RTW, yet faced unique challenges from compounded stigma of both cancer and toileting issues. Inability to RTW negatively impacted financial and psychosocial wellbeing. Workplace support was an important facilitator of RTW. CONCLUSION: For survivors with CRC-A, continuing or RTW is fraught with challenges, including physical functioning challenges, financial anxiety, and unsupportive workplace environments. Survivors require psychosocial, financial, and employer support to manage these difficulties. This paper recommends a multiprong approach, including education programmes (facilitated through workers' union groups, human resource institutions, and/or large consumer CRC groups) and policies, to support workers and for employers to understand the unique challenges of employees with CRC-A.

Fear of Cancer Progression and Death Anxiety in Survivors of Advanced Colorectal Cancer: A Qualitative Study Exploring Coping Strategies and Quality of Life.

This study aimed to examine coping strategies used by advanced colorectal cancer (CRC-A) survivors to manage death anxiety and fear of cancer progression, and links between these strategies and quality of life (QoL), distress, and death acceptance. Qualitative semi-structured interviews of 38 CRC-A survivors (22 female) were analysed via framework analysis. QoL and distress were assessed through the FACT-C and Distress Thermometer. Eleven themes were identified and mapped to active avoidance (keeping busy and distracted), passive avoidance (hoping for a cure), active confrontation (managing negative emotions; reaching out to others; focusing on the present; staying resilient), meaning-making (redefining one's identity; contributing to society; gaining perspective; remaining spiritual), and acceptance (accepting one's situation). Active confrontation (specifically utilising informal support networks) and meaning-making appeared beneficial coping strategies; more research is needed to develop and evaluate interventions which increase CRC-A survivors' use of these strategies to manage and cope with their death anxiety.

Avoiding the 'survivorship abyss': Qualitative insights from 15-year prostate cancer survivors.

OBJECTIVE: As many men diagnosed with prostate cancer (PC) are now living well beyond diagnosis and treatment, these survival gains necessitate improved understanding of long-term survivorship experiences. This is the first qualitative study that aimed to provide insights into PC survivors' adjustment to diagnosis and any persisting or emerging cancer/treatment-related issues over 15+ years. METHODS: Semi-structured interviews were conducted with 37 men purposively sampled from the 15-year follow-up phase of a population-wide cohort study, the New South Wales Prostate Cancer Care and Outcomes Study (PCOS). Interview data were transcribed and thematically analysed applying a framework methodology. RESULTS: The majority of participating men (88.6%) had been diagnosed with localised disease and were treated with radical prostatectomy as primary treatment (54.1%). Four main interconnecting themes relating to men's long-term survivorship experience with PC were identified: (1) Survivorship reflections, (2) interactions with the healthcare system, (3) personal and social relationships and (4) dominant coping strategies. Many men reported gaps along the continuum of care and a feeling of abandonment across their long-term survivorship, encompassed by a perceived lack of psychosocial and informational support for persisting treatment side-effects, especially sexual dysfunction. Receiving adequate survivorship care and trusting patient-clinician relationships appeared to be associated with greater resilience and positivity in the men's acceptance of cancer-related long-term challenges and personal limitations. CONCLUSIONS: Long-term PC survivors continue to experience lasting treatment impacts, with many men reporting unmet needs and a lack of continuity of multidisciplinary care. Implementation of coordinated and tailored survivorship care and shared care pathways with multidisciplinary practitioners will facilitate men's improved engagement and timely access to supportive care interventions, helping to avoid the 'survivorship abyss'.

Colorectal cancer survivorship: A systematic review and thematic synthesis of qualitative research.

INTRODUCTION: With rapid changes in treatments for colorectal cancer (CRC), qualitative research into CRC survivorship requires greater synthesis. This paper aims to fill this gap through a systematic review (PROSPERO CRD42019131576) and thematic synthesis of the qualitative literature on survivorship experiences across early-stage and advanced CRC survivors. METHODS: CINAHL, Embase, MEDLINE, PsycINFO and PubMed were searched for qualitative CRC survivorship papers. Titles, abstracts and full texts were screened. Included articles (n = 81) underwent data extraction, CASP qualitative bias ratings and thematic synthesis. RESULTS: Bowel dysfunction caused functional limitations and negative quality of life (QoL), while stomas posed threats to body image and confidence. Physical symptoms hindered return to work, increasing financial burdens. Survivors' unmet needs included information regarding symptom expectations and management, and ongoing support throughout recovery. Advanced and early-stage survivors shared similar experiences. Advanced survivors struggled with fear of cancer recurrence/progression and feelings of powerlessness. Functional limitations, financial impacts and sexuality in advanced survivors were underexplored areas. CONCLUSION: CRC and its treatments impact survivors' QoL in all areas. A coordinated supportive care response is required to address survivors' unmet needs. Future qualitative studies should explore advanced CRC subpopulations, treatment-specific impacts on QoL and long-term (>5 years) impacts on CRC survivors.

Disability, psychological distress and quality of life in relation to cancer diagnosis and cancer type: population-based Australian study of 22,505 cancer survivors and 244,000 people without cancer.

BACKGROUND: Improved survival means that cancer is increasingly becoming a chronic disease. Understanding and improving functional outcomes are critical to optimising survivorship. We quantified physical and mental health-related outcomes in people with versus without cancer, according to cancer type. METHODS: Questionnaire data from an Australian population-based cohort study (45 and Up Study (n = 267,153)) were linked to cancer registration data to ascertain cancer diagnoses up to enrolment. Modified Poisson regression estimated age- and sex-adjusted prevalence ratios (PRs) for adverse person-centred outcomes-severe physical functional limitations (disability), moderate/high psychological distress and fair/poor quality of life (QoL)-in participants with versus without cancer, for 13 cancer types. RESULTS: Compared to participants without cancer (n = 244,000), cancer survivors (n = 22,505) had greater disability (20.6% versus 12.6%, respectively, PR = 1.28, 95%CI = (1.25-1.32)), psychological (22.2% versus 23.5%, 1.05 (1.02-1.08)) and poor/fair QoL (15.2% versus 10.2%; 1.28 (1.24-1.32)). The outcomes varied by cancer type, being worse for multiple myeloma (PRs versus participants without cancer for disability 3.10, 2.56-3.77; distress 1.53, 1.20-1.96; poor/fair QoL 2.40, 1.87-3.07), lung cancer (disability 2.81, 2.50-3.15; distress 1.67, 1.46-1.92; poor/fair QoL 2.53, 2.21-2.91) and non-Hodgkin's lymphoma (disability 1.56, 1.37-1.78; distress 1.20, 1.05-1.36; poor/fair QoL 1.66, 1.44-1.92) and closer to those in people without cancer for breast cancer (disability 1.23, 1.16-1.32; distress 0.95, 0.90-1.01; poor/fair QoL 1.15, 1.05-1.25), prostate cancer (disability 1.11, 1.04-1.19; distress 1.09, 1.02-1.15; poor/fair QoL 1.15, 1.08-1.23) and melanoma (disability 1.02, 0.94-1.10; distress 0.96, 0.89-1.03; poor/fair QoL 0.92, 0.83-1.01). Outcomes were worse with recent diagnosis and treatment and advanced stage. Physical disability in cancer survivors was greater in all population subgroups examined and was a major contributor to adverse distress and QoL outcomes. CONCLUSIONS: Physical disability, distress and reduced QoL are common after cancer and vary according to cancer type suggesting priority areas for research, and care and support.

Health care providers' perceptions of family caregivers' involvement in consultations within a geriatric hospital setting.

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.

A qualitative exploration of patient and family views and experiences of treatment decision-making in bipolar II disorder.

BACKGROUND: Treatment decision-making in bipolar II disorder (BPII) is challenging, yet the decision support needs of patients and family remain unknown. AIM: To explore patient and family perspectives of treatment decision-making in BPII. METHOD: Semistructured, qualitative interviews were conducted with 28 patients with BPII-diagnosis and 13 family members with experience in treatment decision-making in the outpatient setting. Interviews were audiotaped, transcribed verbatim and analysed thematically using framework methods. Participant demographics, clinical characteristics and preferences for patient decision-making involvement were assessed. RESULTS: Four inter-related themes emerged: (1) Attitudes and response to diagnosis and treatment; (2) Influences on decision-making; (3) The nature and flow of decision-making; (4) Decision support and challenges. Views differed according to patient involvement preferences, time since diagnosis and patients' current mood symptoms. CONCLUSIONS: This is the first known study to provide in-depth patient and family insights into the key factors influencing BPII treatment decision-making, and potential improvements and challenges to this process. Findings will inform the development of BPII treatment decision-making resources that better meet the informational and decision-support priorities of end users. DECLARATION OF INTEREST: This research was partly funded by a Postgraduate Research Grant awarded to the first author by the University of Sydney. No conflicts of interest declared.

A Qualitative Exploration of Clinician Views and Experiences of Treatment Decision-Making in Bipolar II Disorder.

This study qualitatively explored clinicians' views and experiences of treatment decision-making in BPII. Semi-structured interviews were conducted with 20 practising clinicians (n = 10 clinical psychologists, n = 6 GPs, n = 4 psychiatrists) with experience in treating adult outpatients with BPII. Interviews were audiotaped, transcribed verbatim and thematically analysed using framework methods. Professional experience, and preferences for patient involvement in decision-making were also assessed. Qualitative analyses yielded four inter-related themes: (1) (non-)acceptance of diagnosis and treatment; (2) types of decisions; (3) treatment uncertainty and balancing act; and (4) decision-making in consultations. Clinician preferences for treatment, professional experience, and self-reported preferences for patient/family involvement seemed to influence decision-making. This study is the first to explore clinician views and experiences of treatment decision-making in BPII. Findings demonstrate how clinician-related factors may shape treatment decision-making, and suggest potential problems such as patient perceptions of lower-than-preferred involvement.

Exploring the communication of oncologists, patients and family members in cancer consultations: development and application of a coding system capturing family-relevant behaviours (KINcode).

BACKGROUND: Family members (FMs) regularly attend oncology consultations. However, limited studies have assessed actual behaviours of oncologists, patients and FMs - particularly during decision-making. The current study aimed the following: (i) to rigorously develop a family (kin) interaction coding system (KINcode) capturing communication and decision-making behaviours of FMs and family-relevant behaviours of oncologists and patients and (ii) to apply KINcode to initial oncology consultations. METHODS: The 80-item KINcode system was developed and applied to 72 transcripts of audiotaped medical/radiation oncology consultations including an FM, collected as part of two previous studies. RESULTS: The role of the FM varied considerably within the one encounter, with 33% of FMs assuming three or more roles across the four consultation stages. Whilst most FMs asked treatment decision questions (71%), a minority engaged in other behaviours such as prompting patient questions (4%) or providing information relevant to the decision to the oncologist (18%). Although oncologists rarely initiated interaction with FMs such as in rapport building (18%) or asking FMs questions (25%), they were typically fully responsive to FM questions (90%). Many patients asked their FM a question (42%), but few elicited the FM's decision preferences (4%). CONCLUSIONS: This study provides novel insights into the complex nature of family involvement. The findings highlight potentially positive FM-focused consultation behaviours such as oncologist responsiveness to family questions and potential areas for improvement such as rapport building, invitation of questions and validation of the family's role. Family-specific communication skills training should be considered in medical student and professional education settings. Copyright © 2015 John Wiley & Sons, Ltd.

Attitudes and experiences of family involvement in cancer consultations: a qualitative exploration of patient and family member perspectives.

PURPOSE: Family members (FMs) often provide support to patients, regularly attend cancer consultations and are often involved in medical decision-making. Limited research has been conducted to date to understand patients' and FMs' perceptions about family involvement in cancer consultations. Therefore, this study aimed to qualitatively explore the attitudes and experiences of Australian cancer patients and FMs regarding (1) family attendance at consultations, (2) family roles in consultations and (3) the challenges of family involvement. METHODS: Thirty patients and 33 FMs, recruited through either a tertiary metropolitan oncology clinic or national cancer patient advocacy group, participated in semi-structured interviews. Interviews were transcribed and qualitatively analysed using Framework analysis methods. RESULTS: Four relevant themes were identified: (1) negotiating family involvement, (2) attitudes towards the roles FMs assume, (3) challenges of family involvement and (4) family-clinician interactions. Overall, patients appreciated family involvement and valued FMs' provision of emotional and informational support, and FMs also found benefit from participating in consultations. Some patients appreciated their FM assuming the role of 'messenger' between the consultation and extended family. However, a number of challenges were also reported by patients (e.g. maintaining privacy, mismatched patient-family information needs) and FMs (e.g. emotional toll of supportive roles, negative behaviours of clinicians towards FMs). CONCLUSIONS: FMs appear to make valuable contributions to cancer consultations, and their presence can benefit both the patient and the FM themselves in many ways. However, for some FMs, attending consultations can be challenging. Study findings point to the need for psychosocial support addressing FMs' needs and the development of communication strategies for oncology clinicians to positively engage with FMs. Further research is needed in these areas.

Carrying on with life as a lung cancer survivor: a qualitative study of Australian survivors' employment, finances, relationships, and healthcare experiences.

Background: With novel therapies, more individuals are living longer with lung cancer (LC). This study aimed to understand the impacts of LC on life domains such as employment, finances, relationships, and healthcare needs. Methods: Individuals 18+, diagnosed with LC, 6-24 months post-treatment were recruited through an Australian LC cohort study (Embedding Research and Evidence in Cancer Healthcare-EnRICH). Demographic, clinical, quality-of-life and distress data were obtained through the EnRICH study database. Participants completed telephone interviews. Qualitative data were analysed via Framework methods. Results: Twenty interviews (10 females) were conducted. Most participants were diagnosed with advanced LC (Stage III =8, Stage IV =6), and were on average 17 (range, 10-24) months post-diagnosis. Four themes related to "carrying on with life" as a LC survivor were identified: (I) the winding path back to work: those working pre-diagnosis discussed challenges of maintaining/returning to employment, and the meaning and satisfaction derived from work. (II) Vulnerability versus protection: managing the financial impacts of LC: wide variations in financial impacts, some described lost income and high healthcare expenses, others felt financially protected. (III) Connection and loneliness: navigating relationships as a survivor: some experienced lost friendships due to their diagnosis, others noted more meaningful connections. (IV) Still under the umbrella: healthcare during survivorship: participants noted the importance of ongoing oncology team connection and the vital role of cancer care coordinators. Conclusions: Many individuals living with LC want to "carry on" with life. Participants spoke of challenges and opportunities across life domains of relationships, work, and finances, and noted the importance of continued specialist healthcare throughout survivorship.

Development of Web-Based Education Modules to Improve Carer Engagement in Cancer Care: Design and User Experience Evaluation of the e-Triadic Oncology (eTRIO) Modules for Clinicians, Patients, and Carers.

BACKGROUND: Carers often assume key roles in cancer care. However, many carers report feeling disempowered and ill-equipped to support patients. Our group published evidence-based guidelines (the Triadic Oncology [TRIO] Guidelines) to improve oncology clinician engagement with carers and the management of challenging situations involving carers. OBJECTIVE: To facilitate implementation of the TRIO Guidelines in clinical practice, we aimed to develop, iteratively refine, and conduct user testing of a suite of evidence-based and interactive web-based education modules for oncology clinicians (e-Triadic Oncology [eTRIO]), patients with cancer, and carers (eTRIO for Patients and Carers [eTRIO-pc]). These were designed to improve carer involvement, communication, and shared decision-making in the cancer management setting. METHODS: The eTRIO education modules were based on extensive research, including systematic reviews, qualitative interviews, and consultation analyses. Guided by the person-based approach, module content and design were reviewed by an expert advisory group comprising academic and clinical experts (n=13) and consumers (n=5); content and design were continuously and iteratively refined. User experience testing (including "think-aloud" interviews and administration of the System Usability Scale [SUS]) of the modules was completed by additional clinicians (n=5), patients (n=3), and carers (n=3). RESULTS: The final clinician module comprises 14 sections, requires approximately 1.5 to 2 hours to complete, and covers topics such as carer-inclusive communication and practices; supporting carer needs; and managing carer dominance, anger, and conflicting patient-carer wishes. The usability of the module was rated by 5 clinicians, with a mean SUS score of 75 (SD 5.3), which is interpreted as good. Clinicians often desired information in a concise format, divided into small "snackable" sections that could be easily recommenced if they were interrupted. The carer module features 11 sections; requires approximately 1.5 hours to complete; and includes topics such as the importance of carers, carer roles during consultations, and advocating for the patient. The patient module is an adaptation of the relevant carer module sections, comprising 7 sections and requiring 1 hour to complete. The average SUS score as rated by 6 patients and carers was 78 (SD 16.2), which is interpreted as good. Interactive activities, clinical vignette videos, and reflective learning exercises are incorporated into all modules. Patient and carer consumer advisers advocated for empathetic content and tone throughout their modules, with an easy-to-read and navigable module interface. CONCLUSIONS: The eTRIO suite of modules were rigorously developed using a person-based design methodology to meet the unique information needs and learning requirements of clinicians, patients, and carers, with the goal of improving effective and supportive carer involvement in cancer consultations and cancer care.

An online intervention to improve oncology health professional self-efficacy in communicating with carers: Hybrid effectiveness-implementation evaluation of the eTRIO program.

OBJECTIVES: Many oncology health professionals (HPs) report communicating with carers as complex; and receive limited carer-relevant training. We developed an online HP education program for supporting and managing carer involvement (eTRIO). We aimed to assess whether HPs' self-efficacy in carer communication, knowledge, and decision-making preferences improve following eTRIO. Satisfaction and implementation potential were assessed. METHODS: This type 1 hybrid effectiveness-implementation study used a pre-post single arm intervention design. HPs completed baseline measures, the eTRIO online module, and measures at 1- and 12-weeks post-intervention. Measures included: self-efficacy in carer communication (13-items), applied knowledge (7-items), preference for carer involvement in decisions (1-item). Fifteen of participants completed feedback interviews which underwent thematic analysis. User analytics were collected and analysed. RESULTS: Fifty-six HPs completed baseline measures, 42 completed post- and follow-up measures. At baseline mean self-efficacy score was 88. HPs showed a statistically significant increase in self-efficacy post-intervention (mean = 105.8, CI [12.99, 20.47]), maintained at 12-weeks (mean = 101.1, CI [8.00, 15.72]). There were no changes in knowledge or decision-making preferences. Program engagement and satisfaction were high, 86.7% participants rated eTRIO as very/extremely helpful. CONCLUSIONS AND PRACTICE IMPLICATIONS: eTRIO provided HPs with confidence to effectively engage with carers and manage complex situations such as family dominance. These gains are noteworthy, as conflict with families/carers contributes to HP burnout.

Evaluation of a novel individualised communication-skills training intervention to improve doctors' confidence and skills in end-of-life communication.

BACKGROUND: We developed a novel individualised training program regarding end-of-life communication, designed to be time effective for busy junior-doctors working in hospital settings. AIM: We aimed to pilot this brief individualised training program with junior-doctors to explore its acceptability, feasibility and effect on the doctors' confidence, communication skills, attitudes towards psychosocial care and burnout. DESIGN: The content of the training intervention was informed by a systematic literature review and evidence-based clinical practice guidelines regarding end-of-life communication. The intervention was based on sound educational principles and involved three one-hour teaching sessions over a three-week period, including two individual sessions with an expert facilitator and simulated patient/caregiver. In addition, participants received written and audiovisual take-home learning materials. PARTICIPANTS were videotaped consulting with a simulated patient/caregiver pre/post training to assess the impact of the course on their communication behaviours. PARTICIPANTS completed de-identified questionnaires pre/post training, including self-assessed confidence, attitudes to psychosocial care, and the Maslach Burnout inventory. PARTICIPANTS: PARTICIPANTS included 22 junior-doctors from a large teaching hospital in Sydney, Australia. RESULTS: All participants reported that the training was useful, had been helpful for their communication with patients and that they would recommend the training to others. Significant improvements were found in participants' communication skills (in seven out of 21 specific and all three global communication behaviours assessed, range P=0.02 to <0.001), confidence in communicating about relevant topics (P<0.001), attitudes towards psychosocial care (P=0.03) and sense of personal accomplishment (P=0.043). There were no overall differences in participants' burnout levels. CONCLUSION: This intervention shows promise and warrants further formal evaluation.

Healthcare experiences of people with advanced colorectal cancer: A qualitative study.

PURPOSE: 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. METHOD: 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. RESULTS: 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. CONCLUSIONS: 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.

Patient-related characteristics considered to affect patient involvement in shared decision making about treatment: A scoping review of the qualitative literature.

OBJECTIVE: To identify patient-related characteristics considered to affect patient involvement in shared decision making (SDM) about treatment. METHODS: We conducted a scoping review of qualitative studies. We searched for literature across seven databases until March 2022, and included qualitative studies that focused on associations between patient-related characteristics and SDM about treatment in adults. We analyzed studies using an inductive thematic approach. RESULTS: The search yielded 5948 articles, of which 70 were included. We identified many different patient-related characteristics, which we grouped into four categories related to: (1) the individual who is facing the decision, (2) the decision, (3) the relationship between the patient and the clinician and others involved in the decision, and (4) the healthcare context. CONCLUSIONS: Studies report a variety of patient-related characteristics that may affect patient involvement in SDM. Amongst others, patients may need to feel informed, to understand their role in SDM, and be able to communicate. Involvement may be challenging with characteristics such as perceived time pressure, poor patient-clinician relationships, emotional distress, and severe illness. PRACTICE IMPLICATIONS: In order to truly involve patients in SDM, we might need to focus on characteristics such as patient emotions and relationship building, besides information provision and values clarification.

Application of a revised model for coping with advanced cancer to qualitatively explore lung cancer survivors' experiences of ongoing physical effects, novel treatments, uncertainty, and coping.

PURPOSE: Lung cancer remains underrepresented in cancer survivorship research. This study aimed to understand survivors' physical/psychological challenges, experiences of immunotherapy (IO) and targeted therapy (TT), and psychological adjustment through application of the Roberts et al. (2017) advanced cancer adaptation of Folkman and Greer's appraisal and coping model. METHODS: Adults 6-24 months post-initial treatment completion were recruited via an Australian cohort study. Participant demographic, clinical, quality of life, and distress data were obtained through the cohort database. Qualitative interviews were conducted and analyzed using Framework methods. Roberts et al. (2017)'s model informed data interpretation and presentation. RESULTS: Twenty interviews were conducted (10 females; average age 69 years). Participants' diagnostic stages varied (stage I = 2, stage II = 4, stage III = 8, stage IV = 6); most had received IO/TT (n = 14) and were on average 17 months (range 10-24) post-diagnosis. Three themes were identified and mapped to the Roberts' framework: (1) Ongoing illness events: most participants reported functioning well despite ongoing physical effects. Those on IO/TT reported side effects; some were unexpected/serious. (2) Adjusting to life with lung cancer: most expressed hope for the future while simultaneously preparing for disease progression. Those receiving IO/TT experienced uncertainty given limited survival information. (3) Learning to live with lung cancer: participants described emotion, problem, and meaning based on coping strategies. CONCLUSIONS: Findings may guide development of supportive care resources/interventions focused on uncertainty, IO/TT communication and decision-making, and coping. IMPLICATIONS FOR CANCER SURVIVORS: Many people with lung cancer are living well with their ongoing illness. Despite challenges, many survivors are adapting to issues as they arise and are maintaining a sense of hope and optimism.

HPV vaccination and the effect of information framing on intentions and behaviour: an application of the theory of planned behaviour and moral norm.

BACKGROUND: Human papillomavirus (HPV) is a common sexually transmitted infection (STI) known to cause cervical cancer and genital warts. However, making the genital warts aspect explicit may reduce HPV vaccination intention and behaviour due to perceived stigma associated with STIs. PURPOSE: This study investigated the effect of differential information framing on intention to receive the HPV vaccine using the Theory of Planned Behaviour (TPB) and moral norm construct. METHOD: Female university students were randomised to receive a fact sheet describing the HPV vaccine as: (1) preventing cervical cancer only (n = 81); or (2) preventing both cervical cancer and genital warts (n = 78). A 2-month follow-up investigated relationships between vaccination intention and actual behaviour. RESULTS: No effect of information framing was detected on intention to receive the HPV vaccine, or vaccine uptake behaviour at 2-month follow-up. The traditional TPB components predicted 54% of the variance in vaccination intention (F (3,155) = 61.580, p < 0.001), and moral norm explained an additional 6.2%. Intention predicted a significant but relatively small proportion of variation (9.6%) in behaviour. CONCLUSION: The HPV vaccine does not seem to be associated with perceptions of stigma related to genital warts, and has broad acceptance among a female university population. This study demonstrates that TPB is suited to investigate HPV vaccination, and has helped clarify the role of moral norm within the TPB.