The Sarcoma Assessment Measure (SAM): Preliminary Psychometric Validation of a Novel Patient-Reported Outcome Measure.

The Sarcoma Assessment Measure (SAM) was developed as a sarcoma-specific patient-reported outcome measure to be used in clinical practice. We have reported in detail how SAM has been developed in collaboration with patients and healthcare professionals. The aim of this paper is to report the preliminary validation of SAM. The 22-item SAM was administered alongside a validated quality of life questionnaire and measure of activities of daily living. Linear modelling was used to build a measure, which had predictive validity in comparison to more established outcome measures. Of the 762 patients who participated in the study, 44.1% identified as male, and participant age ranged from 13 to 82 years. Clinically, participants presented with a range of soft tissue (82.2%) and bone (21.8%) sarcomas. Our preliminary analysis indicates that SAM accounts for 35% of the global quality of life scale and 18% of the Toronto Extremity Salvage Scale (TESS); so psychometrically, it overlaps with quality of life and activities of daily living, but also measures distinct concerns. This demonstrates that this measure picks up issues that are important to patients with sarcoma that are not reflected in other measures. We have established the preliminary validity of SAM and believe it has utility as a patient-reported outcome measure both as a research tool and for assessing the impact of symptoms and dysfunction related to sarcoma as part of clinical care. Further validation using a larger and more clinically diverse sample is now needed.

Fear of Cancer Recurrence in Patients with Sarcoma in the United Kingdom.

Fear of cancer recurrence (FCR) is a persistent concern among those living with cancer and is associated with a variety of negative psychosocial outcomes. However, people with sarcoma have been underrepresented within this area of research. We aimed to determine the prevalence of FCR experienced by people with sarcoma in the United Kingdom and explore factors that may predict FCR, such as the perceived impact of cancer and psychological flexibility. Participants (n = 229) with soft tissue (n = 167), bone (n = 25), and gastrointestinal stromal tumours (n = 33) completed an online survey including the self-reported measures of FCR, the perceived physical and psychological impact of cancer and psychological flexibility, and demographic information. Data were analysed using ANOVA and multiple regression modelling. Mean FCR scores (M = 91.4; SD = 26.5) were higher than those reported in meta-analytic data inclusive of all cancer types (M = 65.2; SD = 28.2). Interest in receiving support for FCR was also high (70%). Significant factors associated with FCR included cognitive and emotional distress and psychological flexibility, but not perceptions of the physical impact of cancer (R2 = 0.56). The negative association between psychological flexibility and FCR suggests the potential benefit of intervention approaches which foster psychological flexibility, such as acceptance and commitment therapy.

Feasibility of RESTORE: An online Acceptance and Commitment Therapy intervention to improve palliative care staff wellbeing.

BACKGROUND: Acceptance and Commitment Therapy is a form of Cognitive Behavioural Therapy which uses behavioural psychology, values, acceptance and mindfulness techniques to improve mental health and wellbeing. Acceptance and Commitment Therapy is efficacious in treating stress, anxiety and depression in a broad range of settings including occupational contexts where emotional labour is high. This approach could help palliative care staff to manage work-related stress and promote wellbeing. AIM: To develop, and feasibility test, an online Acceptance and Commitment Therapy intervention to improve wellbeing of palliative care staff. DESIGN: A single-arm feasibility trial of an 8-week Acceptance and Commitment Therapy based intervention for staff, consisting of three online facilitated group workshops and five online individual self-directed learning modules. Data was collected via online questionnaire at four time-points and online focus groups at follow-up. SETTING/PARTICIPANTS: Participants were recruited from Marie Curie hospice and nursing services in Scotland. RESULTS: Twenty five staff commenced and 23 completed the intervention (93%). Fifteen participated in focus groups. Twelve (48%) completed questionnaires at follow-up. Participants found the intervention enjoyable, informative and beneficial. There was preliminary evidence for improvements in psychological flexibility (Cohen's d = 0.7) and mental wellbeing (Cohen's d = 0.49) between baseline and follow-up, but minimal change in perceived stress, burnout or compassion satisfaction. CONCLUSION: Online Acceptance and Commitment Therapy for wellbeing is acceptable to palliative care staff and feasible to implement using Microsoft Teams in a palliative care setting. Incorporating ways to promote long-term maintenance of behaviour changes, and strategies to optimise data collection at follow-up are key considerations for future intervention refinement and evaluation.

Web-Based Psychological Interventions for People Living With and Beyond Cancer: Meta-Review of What Works and What Does Not for Maximizing Recruitment, Engagement, and Efficacy.

BACKGROUND: Despite high levels of psychological distress experienced by many patients with cancer, previous research has identified several barriers to accessing traditional face-to-face psychological support. Web-based psychosocial interventions have emerged as a promising alternative. OBJECTIVE: This meta-review aimed to synthesize evidence on recruitment challenges and enablers, factors that promote engagement and adherence to web-based intervention content, and factors that promote the efficacy of web-based psychosocial interventions for patients with cancer and cancer survivors. METHODS: We conducted a systematic search of previous reviews that investigated the recruitment, engagement, and efficacy of web-based and app-based psychosocial interventions in adult patients with cancer and cancer survivors. We searched PubMed, CINAHL, PsycINFO, and the Cochrane Library database for relevant literature. The search terms focused on a combination of topics pertaining to neoplasms and telemedicine. Two independent authors conducted abstract screening, full text screening, and data extraction for each identified article. RESULTS: A total of 20 articles met eligibility criteria. There was inconsistency in the reporting of uptake and engagement data; however, anxiety about technology and perceived time burden were identified as 2 key barriers. Web-based psychosocial oncology interventions demonstrated efficacy in reducing depression and stress but reported weak to mixed findings for distress, anxiety, quality of life, and well-being. Although no factors consistently moderated intervention efficacy, preliminary evidence indicated that multicomponent interventions and greater communication with a health care professional were preferred by participants and were associated with superior effects. CONCLUSIONS: Several consistently cited barriers to intervention uptake and recruitment have emerged, which we recommend future intervention studies address. Preliminary evidence also supports the superior efficacy of multicomponent interventions and interventions that facilitate communication with a health care professional. However, a greater number of appropriately powered clinical trials, including randomized trials with head-to-head comparisons, are needed to enable more confident conclusions regarding which web-based psychosocial oncology interventions work best and for whom. TRIAL REGISTRATION: PROSPERO CRD42020202633; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=202633.

Specialist palliative and end-of-life care for patients with cancer and SARS-CoV-2 infection: a European perspective.

BACKGROUND: Specialist palliative care team (SPCT) involvement has been shown to improve symptom control and end-of-life care for patients with cancer, but little is known as to how these have been impacted by the COVID-19 pandemic. Here, we report SPCT involvement during the first wave of the pandemic and compare outcomes for patients with cancer who received and did not receive SPCT input from multiple European cancer centres. METHODS: From the OnCovid repository (N = 1318), we analysed cancer patients aged ⩾18 diagnosed with COVID-19 between 26 February and 22 June 2020 who had complete specialist palliative care team data (SPCT+ referred; SPCT- not referred). RESULTS: Of 555 eligible patients, 317 were male (57.1%), with a median age of 70 years (IQR 20). At COVID-19 diagnosis, 44.7% were on anti-cancer therapy and 53.3% had ⩾1 co-morbidity. Two hundred and six patients received SPCT input for symptom control (80.1%), psychological support (54.4%) and/or advance care planning (51%). SPCT+ patients had more 'Do not attempt cardio-pulmonary resuscitation' orders completed prior to (12.6% versus 3.7%) and during admission (50% versus 22.1%, p < 0.001), with more SPCT+ patients deemed suitable for treatment escalation (50% versus 22.1%, p < 0.001). SPCT involvement was associated with higher discharge rates from hospital for end-of-life care (9.7% versus 0%, p < 0.001). End-of-life anticipatory prescribing was higher in SPCT+ patients, with opioids (96.3% versus 47.1%) and benzodiazepines (82.9% versus 41.2%) being used frequently for symptom control. CONCLUSION: SPCT referral facilitated symptom control, emergency care and discharge planning, as well as high rates of referral for psychological support than previously reported. Our study highlighted the critical need of SPCTs for patients with cancer during the pandemic and should inform service planning for this population.

The Finding My Way UK Clinical Trial: Adaptation Report and Protocol for a Replication Randomized Controlled Efficacy Trial of a Web-Based Psychological Program to Support Cancer Survivors.

BACKGROUND: Cancer survivors frequently report a range of unmet psychological and supportive care needs; these often continue after treatment has finished and are predictive of psychological distress and poor health-related quality of life. Web-based interventions demonstrate good efficacy in addressing these concerns and are more accessible than face-to-face interventions. Finding My Way (FMW) is a web-based, psycho-educational, and cognitive behavioral therapy intervention for cancer survivors developed in Australia. Previous trials have demonstrated that FMW is acceptable, highly adhered to, and effective in reducing the impact of distress on quality of life while leading to cost savings through health resource use reduction. OBJECTIVE: This study aims to adapt the Australian FMW website for a UK cancer care context and then undertake a single-blinded, randomized controlled trial of FMW UK against a treatment-as-usual waitlist control. METHODS: To an extent, our trial design replicates the existing Australian randomized controlled trial of FMW. Following a comprehensive adaptation of the web resource, we will recruit 294 participants (147 per study arm) from across clinical sites in North West England and North Wales. Participants will have been diagnosed with cancer of any type in the last 6 months, have received anticancer treatment with curative intent, be aged ≥16 years, be proficient in English, and have access to the internet and an active email address. Participants will be identified and recruited through the National Institute for Health Research clinical research network. Measures of distress, quality of life, and health economic outcomes will be collected using a self-report web-based questionnaire at baseline, midtreatment, posttreatment, and both 3- and 6-month follow-up. Quantitative data will be analyzed using intention-to-treat mixed model repeated measures analysis. Embedded semistructured qualitative interviews will probe engagement with, and experiences of using, FMW UK and suggestions for future improvements. RESULTS: The website adaptation work was completed in January 2021. A panel of cancer survivors and health care professionals provided feedback on the test version of FMW UK. Feedback was positive overall, although minor updates were made to website navigation, inclusivity, terminology, and the wording of the Improving Communication and Sexuality and Intimacy content. Recruitment for the clinical trial commenced in April 2021. We aim to report on findings from mid-2023. CONCLUSIONS: Replication studies are an important aspect of the scientific process, particularly in psychological and clinical trial literature, especially in different geographical settings. Before replicating the FMW trial in the UK setting, content updating was required. If FMW UK now replicates Australian findings, we will have identified a novel and cost-effective method of psychosocial care delivery for cancer survivors in the United Kingdom. TRIAL REGISTRATION: International Standard Randomized Controlled Trial Number (ISRCTN) 14317248; https://www.isrctn.com/ISRCTN14317248. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/31976.

Brief Engagement and Acceptance Coaching for Hospice Settings (the BEACHeS study): results from a Phase I study of acceptability and initial effectiveness in people with non-curative cancer.

OBJECTIVES: Transitioning into palliative care is psychologically demanding for people with advanced cancer, and there is a need for acceptable and effective interventions to support this. We aimed to develop and pilot test a brief Acceptance and Commitment Therapy (ACT) based intervention to improve quality of life and distress. METHODS: Our mixed-method design included: (i) quantitative effectiveness testing using Single Case Experimental Design (SCED), (ii) qualitative interviews with participants, and (iii) focus groups with hospice staff. The five-session, in-person intervention was delivered to 10 participants; five completed at least 80%. RESULTS: At baseline, participants reported poor quality of life but low distress. Most experienced substantial physical health deterioration during the study. SCED analysis methods did not show conclusively significant effects, but there was some indication that outcome improvement followed changes in expected intervention processes variables. Quantitative and qualitative data together demonstrates acceptability, perceived effectiveness and safety of the intervention. Qualitative interviews and focus groups were also used to gain feedback on intervention content and to make design recommendations to maximise success of later feasibility trials. CONCLUSIONS: This study adds to the growing evidence base for ACT in people with advanced cancer. A number of potential intervention mechanisms, for example a distress-buffering hypothesis, are raised by our data and these should be addressed in future research using randomised controlled trial designs. Our methodological recommendations-including recruiting non-cancer diagnoses, and earlier in the treatment trajectory-likely apply more broadly to the delivery of psychological intervention in the palliative care setting. This study was pre-registered on the Open Science Framework (Ref: 46,033) and retrospectively registered on the ISRCTN registry (Ref: ISRCTN12084782).

Evaluating the impact of COVID-19 on supportive care needs, psychological distress and quality of life in UK cancer survivors and their support network.

OBJECTIVES: The COVID-19 pandemic is having considerable impact on cancer care, including restricted access to hospital-based care, treatment and psychosocial support. We investigated the impact on unmet needs and psychosocial well-being. METHODS: One hundred and forty four participants (77% female), including people with cancer and their support networks, were recruited. The most prevalent diagnosis was breast cancer. Forty-one participants recruited pre-pandemic were compared with 103 participants recruited during the COVID-19 pandemic. We measured participants' unmet supportive care needs, psychological distress and quality of life. RESULTS: Half of our patient respondents reported unexpected changes to treatment following pandemic onset, with widespread confusion about their longer-term consequences. Although overall need levels have not increased, specific needs have changed in prominence. People with cancer reported significantly reduced anxiety (p = 0.049) and improved quality of life (p = 0.032) following pandemic onset, but support network participants reported reduced quality of life (p = 0.009), and non-significantly elevated anxiety, stress and depression. CONCLUSION: Psychological well-being of people with cancer has not been detrimentally affected by pandemic onset. Reliance on home-based support to compensate for the lost availability of structured healthcare pathways may, however, explain significant and detrimental effects on the well-being and quality of life of people in their support and informal care networks.

Acceptance and commitment therapy (ACT)-enhanced communication skills: development and evaluation of a novel training programme.

BACKGROUND: Psychological suffering is ubiquitous with cancer and frequently presents as an unmet supportive care need. In clinical practice, distress-related needs are often addressed by nurses and non-psychologist allied healthcare professionals who may have limited training in psychological therapeutic frameworks, particularly more recently developed interventions such as Acceptance and Commitment Therapy (ACT). AIMS: We developed a single-day training programme for professionals working in supportive and palliative cancer care settings to change the nature of clinical communication about psychological distress and suffering towards an ACT-consistent approach. METHOD: We report on experiences of training delivery, and evaluation data about training satisfaction and intention to apply the training to clinical practice, from three training iterations in British and Australian, government-funded and charitable sectors. One hundred and sixteen cancer care professionals participated in the training. Evaluation data were collected from 53 participants (at either 2-week or 3-month follow-ups, or both) using self-report survey, including both quantitative and free-text questions. RESULTS: At 2 week follow-up, 73% of trainees rating our course as having relevance to their work, and at 3 month follow-up, 46% agreed that they were better placed to provide improved clinical services. Qualitative feedback supported the inclusion of experiential learning and theoretical explanations underpinning ACT techniques. Undertaking this training did not significantly increase trainees' stress levels, nor did implementation of this new way of working negatively affect staff well-being. Positive, ACT-consistent, changes in communication behaviours and attitudes were reported, however there was a lack of significant change in psychological flexibility. DISCUSSION: Acceptability and applicability of this training to supportive and palliative healthcare is positive. The lack of change in psychological flexibility suggests a potential need for more experiential content in the training programme. Logistical challenges in one training group suggests the need for more robust train-the-trainer models moving forward.

Development and usability testing of a web-based psychosocial intervention for women living with metastatic breast cancer: Finding My Way-Advanced.

PURPOSE: Women living with metastatic breast cancer (MBC) face significant distress and unmet needs, yet few resources have been developed for this population. The current study aimed to develop and evaluate the usability of Finding My Way-Advanced (FMW-A), a web-based self-guided psychosocial program for women with MBC. METHODS: FMW-A was co-designed through (a) adapting an efficacious online program for people with curatively treated cancer and (b) receiving iterative rounds of input and feedback from a multidisciplinary co-design team including consumers, clinicians, and academics. A think-aloud protocol was then implemented to test the usability of the resulting 6-module prototype, with women living with MBC accessing up to three modules with an interviewer sitting along-side. Participants were recruited until saturation of themes occurred. Data were analysed thematically. RESULTS: Participants (n=8) were, on average, 65.3 years old, mostly partnered (n=5), retired (n=6), post-secondary school educated (n=6), and with non-dependent children (n=7). Feedback fell into 6 themes. Positive feedback about FMW-A summarised the supportive and informative nature of the program, supplemented by comments about broadly relatable content. However, one size clearly did not fit all: within themes, diverging experiences emerged regarding navigability, worksheets, and layout. Participants noted that having/making time for the intervention would be important to program engagement. CONCLUSIONS: Usability testing indicated participants found content helpful and relatable, and identified significant pragmatic improvements to be made prior to further testing. IMPLICATIONS FOR CANCER SURVIVORS: The development of FMW-A represents an important step in providing acceptable resources to support women living with MBC.

A review of stress management interventions for the oncology nursing workforce: What do we know and what should we be doing differently?

Oncology nurses are at risk of chronic stress. In this narrative review we provide an overview of stress management intervention studies for oncology nurses, and suggest that Acceptance and Commitment Therapy/Training (ACT) provides a better intervention framework due to the relevance of underpinning therapeutic processes (e.g. acceptance, mindfulness, values clarification) to the role and stress-related experiences of this workforce population. Current evidence for the effectiveness of stress management intervention varies, with few studies describing how theory informs intervention content, or justifying why they should benefit this population specifically. ACT lends itself to data-driven intervention development, thus potentially addressing some methodological limitations in this field. Only one trial has tested ACT in this population, reporting only partial effects. Further empirical research is required given (a) the applicability of ACT for this population and context, and (b) the associated advantages of brief and/or group delivery to address known barriers to participating in stress management interventions.

Research Evaluating Staff Training Online for Resilience (RESTORE): Protocol for a single-arm feasibility study of an online Acceptance and Commitment Therapy intervention to improve staff wellbeing in palliative care settings.

Background: Palliative care staff commonly experience workplace stress and distress. General stressors include unmanageable workloads and staff shortages. Stressors specific to palliative care include regular exposure to death, loss and grief. The COVID-19 pandemic exacerbated exhaustion and burnout across the healthcare system, including for those providing palliative care. Evidence based psychological support interventions, tailored to the needs and context of palliative care staff, are needed. Acceptance and Commitment Therapy (ACT) is an established form of cognitive behavioural therapy which uses behavioural psychology, values, acceptance, and mindfulness techniques to improve mental health and wellbeing. ACT is effective in improving workplace wellbeing in many occupational settings. Our study examines the acceptability and feasibility of an online ACT-based intervention to improve mental health and wellbeing in staff caring for people with an advanced progressive illness. Methods: We plan a single-arm feasibility trial. We will seek to recruit 30 participants to take part in an 8- week online ACT-based intervention, consisting of three synchronous facilitated group sessions and five asynchronous self-directed learning modules. We will use convergent mixed methods to evaluate the feasibility of the intervention. Quantitative feasibility outcomes will include participant recruitment and retention rates, alongside completion rates of measures assessing stress, quality of life, wellbeing, and psychological flexibility. Focus groups and interviews will explore participant perspectives on the intervention. We will run a stakeholder workshop to further refine the intervention and identify outcomes for use in a future evaluation. Results: We will describe participant perspectives on intervention acceptability, format, content, and perceived impact, alongside rates of intervention recruitment, retention, and outcome measure completion. Conclusion: We will show whether a brief, online ACT intervention is acceptable to, and feasible for palliative care staff. Findings will be used to further refine the intervention and provide essential information on outcome assessment prior to a full-scale evaluation.

Palliative care staff commonly experience workplace stress and distress. General stressors include unmanageable workloads and staff shortages. Stressors specific to palliative care include regular exposure to death, loss and grief. The COVID pandemic increased exhaustion and burnout across the healthcare system, including for workers providing palliative care. An introduction to psychological therapies for professionals caring for people with a terminal illness may improve workplace wellbeing. Acceptance and Commitment Therapy (ACT) is an established form of cognitive behavioural therapy which uses behavioural psychology, values, acceptance, and mindfulness techniques to improve mental health and wellbeing. ACT is effective in improving workplace wellbeing in many occupational settings though has not yet been evaluated with hospice staff. Our study will examines whether a brief ACT intervention, delivered online, is helpful to hospice staff, and research on this can be carried out. We will seek to recruit 30 hospice staff participants to take part in an 8-week online ACT-based intervention, consisting of three online in-person group sessions and five self-directed learning modules. We will gather date from a range of sources, including questionnaires and focus groups, to work out whether there is value in this type of intervention. We will describe participant views on the intervention, what worked and what needs to be refined; alongside data on the number of people interested in participating and of those the proportion completing the intervention. We will show whether a brief, online ACT intervention can potentially improve wellbeing for palliative care staff, and can be evaluated in future studies. Findings will be used to further refine the intervention and provide essential information for future research.

Evaluating process and effectiveness of a low-intensity CBT intervention for women with gynaecological cancer (the EPELIT Trial).

Background: Improving survival from gynaecological cancers is creating an increasing clinical challenge for long-term distress management. Psychologist-led interventions for cancer survivors can be beneficial, but are often costly. The rise of the Psychological Wellbeing Practitioner (PWP) workforce in the UK might offer a cheaper, but equally effective, intervention delivery method that is more sustainable and accessible. We aimed to test the effectiveness of a PWP co-facilitated intervention for reducing depression and anxiety, quality of life and unmet needs. Methods: We planned this trial using a pragmatic, non-randomised controlled design, recruiting a comparator sample from a second clinical site. The intervention was delivered over six-weekly sessions; data were collected from participants at baseline, weekly during the intervention, and at one-week and three-month follow-up. Logistical challenges meant that we only recruited 8 participants to the intervention group, and 26 participants to the control group. Results: We did not find significant, between-group differences for depression, quality of life or unmet needs, though some differences at follow-up were found for anxiety ( p<.001). Analysis of potential intervention mediator processes indicated the potential importance of self-management self-efficacy. Low uptake into the psychological intervention raises questions about (a) patient-driven needs for group-based support, and (b) the sustainability of this intervention programme. Conclusions: This study failed to recruit to target; the under-powered analysis likely explains the lack of significant effects reported, though some trends in the data are of interest. Retention in the intervention group, and low attrition in the control group indicate acceptability of the intervention content and trial design; however a small baseline population rendered this trial infeasible in its current design. Further work is required to answer our research questions, but also, importantly, to address low uptake for psychological interventions in this group of cancer survivors. Trial registration: ClinicalTrials.gov, NCT03553784 (registered 14 June 2018).

An increasing number of people are surviving for longer time periods following treatment for gynaecological cancer and this means we need to change how we care for and support a growing cancer survivor population. Psychological distress and poor quality of life are common in people affected by cancer, and these do not always improve once treatment ends. Providing psychological support can be expensive, which means that not everyone who wants it can access it. Psychological Wellbeing Practitioners (PWPs) have been introduced in UK health care. This workforce might offer an alternative for providing psychological support to a greater number of cancer survivors. We aimed to test how good a PWP co-delivered intervention is at improving depression, anxiety and quality of life in people who had been treated for gynaecological cancer. The intervention was delivered to small groups of patients over six weekly sessions. We compared those who received the intervention with a similar patient group who did not have access to the same psychological support from a different hospital. Participants reported their psychological wellbeing and quality of life at the point of recruitment, weekly for six weeks, and then at follow-up time-points one week and three months later. Because of low interest in the group intervention we did not recruit to target. Only 8 participants took part in the intervention, and we recruited only 26 participants in the control group. This means we can't have full confidence in our results. Nonetheless, the findings indicate that this intervention was helpful for improving participants' anxiety levels. Further trials, which recruit a larger number of cancer survivors, are needed to answer our research questions. However, this trial indicates acceptability and potential benefit. We also need to undertake research to understand why so few cancer survivors wanted to take part in this group-based intervention.

Brief Engagement and Acceptance Coaching for Community and Hospice Settings (the BEACHeS Study): Protocol for the development and pilot testing of an evidence-based psychological intervention to enhance wellbeing and aid transition into palliative care.

BACKGROUND: Cancer affects millions of individuals globally, with a mortality rate of over eight million people annually. Although palliative care is often provided outside of specialist services, many people require, at some point in their illness journey, support from specialist palliative care services, for example, those provided in hospice settings. This transition can be a time of uncertainty and fear, and there is a need for effective interventions to meet the psychological and supportive care needs of people with cancer that cannot be cured. Whilst Acceptance and Commitment Therapy (ACT) has been shown to be effective across diverse health problems, robust evidence for its effectiveness in palliative cancer populations is not extensive. METHOD: This mixed-methods study uses a single-case experimental design with embedded qualitative interviews to pilot test a novel intervention for this patient group. Between 14 and 20 patients will be recruited from two hospices in England and Scotland. Participants will receive five face-to-face manualised sessions with a psychological therapist. Sessions are structured around teaching core ACT skills (openness, awareness and engagement) as a way to deal effectively with challenges of transition into specialist palliative care services. Outcome measures include cancer-specific quality of life (primary outcome) and distress (secondary outcome), which are assessed alongside measures of psychological flexibility. Daily diary outcome assessments will be taken for key measures, alongside more detailed weekly self-report, through baseline, intervention and 1-month follow-up phases. After follow-up, participants will be invited to take part in a qualitative interview to understand their experience of taking part and acceptability and perceived effectiveness of the intervention and its components. DISCUSSION: This study is the first investigation of using ACT with terminally ill patients at the beginning of their transition into palliative treatment. Using in-depth single-case approaches, we will refine and manualise intervention content by the close of the study for use in follow-up research trials. Our long-term goal is then to test the intervention as delivered by non-psychologist specialist palliative care practitioners thus broadening the potential relevance of the approach. TRIAL REGISTRATION: Open Science Framework, 46033. Registered 19 April 2018.

Relationships among unmet needs, depression, and anxiety in non-advanced cancer patients.

INTRODUCTION: In oncology settings, less attention is given to patients' unmet needs and to existential and emotional distress compared to physical symptoms. We aimed to evaluate correlations between unmet needs and emotional distress (self-reported anxiety and depression) in a consecutive cohort of cancer patients. The influence of sociodemographic and clinical factors was also considered. METHODS: A total of 300 patients with cancer recruited from an outpatient Supportive Care Unit of a Comprehensive Cancer Centre completed the Need Evaluation Questionnaire and the Edmonton Symptom Assessment System (ESAS). Unmet needs covered 5 distinct domains (informational, care/assistance, relational, psychoemotional, and material). RESULTS: After removal of missing data, we analyzed data from 258 patients. Need for better information on future health concerns (43%), for better services from the hospital (42%), and to speak with individuals in the same condition (32%) were the most frequently reported as unmet. Based on the ESAS, 27.2% and 17.5% of patients, respectively, had a score of anxiety or depression >3 and needed further examination for psychological distress. Female patients had significantly higher scores for anxiety ( p < 0.001) and depression ( p = 0.008) compared to male patients. Unmet needs were significantly correlated with both anxiety ( rs = 0.283) and depression ( rs = 0.284). Previous referral to a psychologist was significantly associated with depression scores ( p = 0.015). Results were confirmed by multiple regression analysis. CONCLUSIONS: Screening for unmet needs while also considering sociodemographic and clinical factors allows early identification of cancer patients with emotional distress. Doing so will enable optimal management of psychological patient-reported outcomes in oncology settings.

Recruiting cancer survivors into research studies using online methods: a secondary analysis from an international cancer survivorship cohort study.

Recruiting participants into cancer survivorship research remains a significant challenge. Few studies have tested and compared the relative use of non-clinical online recruitment methods, especially in samples of adult cancer survivors. This paper reports on the feasibility of recruiting a representative cohort of cancer survivors using online social media. Two hundred participants with cancer diagnosis within the past 12 months were recruited via social media (Facebook, Twitter and Reddit) into a longitudinal questionnaire study. Different methods of online recruitment proved to be more effective than others over time. Paid Facebook boosting, Reddit posts and Twitter advertisements placed by existing cancer charities proved most helpful in reaching our recruitment target (contributing 27%, 22% and 32%, respectively). Recruiting online achieved a more demographically and clinically representative sample for our study: our subject was younger, less heteronormative, including those with a range of clinical diagnoses, primary and recurrence illness, and patients who had both completed and were still receiving treatment. This was certainly not a quick method of sample recruitment but that could have been optimised by focussing only on the three most effective methods described earlier. While we found that online recruitment is significantly lower in cost than traditional recruitment methods, and can reduce some biases, there still remains the potential for some biases (e.g. excluding much older participants) and ethical/methodological issues (e.g. excluding those without access to Internet). We outline our recruitment strategy, retention rates and a cost breakdown in order to guide other researchers considering such methods for future research in cancer survivorship.

Psychological support for patients with cancer: evidence review and suggestions for future directions.

PURPOSE OF REVIEW: Psychological distress and mental health comorbidity are common in cancer. Various therapeutic frameworks have been used for interventions to improve psychological wellbeing and quality of life in cancer patients with mixed results. This article reviews contributions to that literature published since January 2017. RECENT FINDINGS: The majority of new psychological intervention research in cancer has used cognitive behavioural therapy (CBT) or mindfulness-based interventions. CBT has been considered a gold-standard intervention and recent evidence justifies continuation of this. Recent reviews call into question the validity of evidence for mindfulness-based interventions. A smaller number of trials using acceptance and commitment therapy, meta-cognitive therapy, dignity therapy and coaching have emerged, and whereas findings are promising, additional fully powered trials are required. Weaker evidence exists for counselling, support-based and narrative therapy interventions. SUMMARY: Efficacious, timely and acceptable psychological interventions are a necessary component of comprehensive cancer care. There is some way to go before the evidence conclusively points towards which interventions work for which cancer groups and for which specific outcomes. Methodological limitations must be addressed in future trials; at the forefront remains the need for fully powered, head-to-head comparison trials.

A systematic review of psychotherapeutic interventions for women with metastatic breast cancer: Context matters.

OBJECTIVES: To summarise the evidence-base of psychological interventions for women with metastatic breast cancer, by mode of delivery (group, individual, or low-intensity interventions). To synthesise data regarding core intervention-elements (eg, intervention duration) and context factors (trial setting, uptake and adherence, and demographic characteristics). METHODS: Four databases were searched (inception-May 2016): MEDLINE (OvidSP), PsycINFO (OvidSP), CINAHL (EBSCO), and SCOPUS; reference lists were examined for additional publications. Grey literature was excluded. Outcome data were extracted for survival, distress, quality of life, coping, sleep, fatigue, and/or pain and summarised through narrative synthesis. RESULTS: Fifteen randomised clinical trials (RCTs), reported across 23 articles, met inclusion criteria: 7 groups, 4 individuals, and 4 low-intensity interventions. Overall, interventions improved distress (8/13 RCTs), coping (4/5 RCTs), and pain (4/5 RCTs). No evidence of survival benefit was found. For remaining outcomes, evidence was either insufficient, or too mixed to draw conclusions. Group programs had the strongest evidence-base for efficacy; individual and low-intensity therapy had insufficient evidence to form conclusions. Group interventions had longest intervention durations and lowest uptake and adherence; low-intensity interventions had shortest durations and highest uptake and adherence. Disparities in uptake, adherence, and reach were evident, with the demographic profile of participants polarised to young, Caucasian, English-speaking, partnered women. CONCLUSIONS: There remains a paucity of psychological interventions for women with metastatic breast cancer. Those that exist have an inconsistent evidence-base across the range of patient-reported outcomes. Further research is needed to evaluate accessible delivery formats that ensure efficacy as well as uptake.

Universal BRCA1/BRCA2 Testing for Ovarian Cancer Patients is Welcomed, but with Care: How Women and Staff Contextualize Experiences of Expanded Access.

Decreasing costs of genetic testing and advances in treatment for women with cancer with germline BRCA1/BRCA2 mutations have heralded more inclusive genetic testing programs. The Genetic Testing in Epithelial Ovarian Cancer (GTEOC) Study, investigates the feasibility and acceptability of offering genetic testing to all women recently diagnosed with epithelial ovarian cancer (universal genetic testing or UGT). Study participants and staff were interviewed to: (i) assess the impact of UGT (ii) integrate patients' and staff perspectives in the development of new UGT programs. Semi-structured interviews were conducted with twelve GTEOC Study participants and five members of staff involved in recruiting them. The transcripts were transcribed verbatim and analyzed using Interpretative Phenomenological Analysis. There are two super-ordinate themes: motivations and influences around offers of genetic testing and impacts of genetic testing in ovarian cancer patients. A major finding is that genetic testing is contextualized within the broader experiences of the women; the impact of UGT was minimized in comparison with the ovarian cancer diagnosis. Women who consent to UGT are motivated by altruism and by their relatives' influence, whilst those who decline are often considered overwhelmed or fearful. Those without a genetic mutation are usually reassured by this result, whilst those with a genetic mutation must negotiate new uncertainties and responsibilities towards their families. Our findings suggest that UGT in this context is generally acceptable to women. However, the period shortly after diagnosis is a sensitive time and some women are emotionally overburdened. UGT is considered a 'family affair' and staff must acknowledge this.