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.

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.

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.

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.

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.

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.

Ultra-brief non-expert-delivered defusion and acceptance exercises for food cravings: A partial replication study.

Food cravings are a common barrier to losing weight. This article presents a randomised comparison of non-expert group-delivered ultra-brief defusion and acceptance interventions against a distraction control. A total of 63 participants were asked to carry a bag of chocolates for a week while trying to resist the temptation to eat them. A behavioural rebound measure was administered. Each intervention out-performed control in respect of consumption, but not cravings. These techniques may have a place in the clinical management of food cravings. We provide tentative evidence that the mechanism of action is through decreased reactivity to cravings, not through reduced frequency of cravings.

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.

"You don't know what's wrong with you": an exploration of cancer-related experiences in people with an intellectual disability.

OBJECTIVE: Few empirical studies have explored cancer-related experiences of people with an intellectual disability (ID), despite rising cancer incidence in this population. The present research aims to better understand the experiences of this population from multiple perspectives, generating theory and further research questions. METHODS: Six people with ID and cancer, alongside 12 participants from their supportive network (including family and social and health care professionals), were interviewed; transcripts were analyzed using grounded theory. RESULTS: People with ID were often overlooked within cancer consultations and excluded from conversations about their care and treatment-related decisions. Caregivers (family and paid) were relied upon to facilitate communication and understanding and supplement health care professional knowledge. Caregivers' attempts to protect the patient from distress harmed communication further; our interviewees suggest that increased involvement and empowerment mediated cancer-related distress. Where health care professionals possessed good patient-centered skills, and additional support was offered, people with ID were more likely to engage meaningfully in their cancer-related experience. CONCLUSIONS: Interestingly, emergent concepts were consistent with general psycho-oncology literature; however, incidence and severity of difficulty was substantially greater in this sample. This disparity warrants further exploration, with a need for intervention research to develop effective ways of supporting health care professionals in enhancing patient-centered skills with this population. In the clinical setting, patient involvement in health care decisions (despite problems associated with comorbidity) is imperative to optimize engagement.

Caring for cancer patients with an intellectual disability: Attitudes and care perceptions of UK oncology nurses.

PURPOSE: Caring for people with cancer or an intellectual disability (ID) is stressful: little is known about the combined impact of caring for cancer patients with an ID, though this is expected to be especially challenging. METHOD: Eighty-three nurses, working in oncology or a related field (i.e. palliative care) were recruited. Perceptions of caring for patients with and without an ID were measured, alongside potentially confounding information about participant demographic characteristics and perceived stress. RESULTS: Participants felt less comfortable communicating with patients with an ID about their illness (F(1,82) = 59.52, p < 0.001), more reliant on a caregiver for communication (F(1,82) = 26.29, p < 0.001), and less confident that the patient's needs would be identified (F(1,82) = 42.03, p < 0.001) and met (F(1,81) = 62.90, p < 0.001). Participants also believed that caring for this patient group would induce more stress, compared with patients without an ID (F(1,81) = 31.592, p < 0.001). Previous experience working with ID patient groups appears to mitigate some perceptions about providing care to this population. CONCLUSIONS: Caring for cancer patients with an ID may intensify this, already difficult, role. Through training and knowledge exchange, oncology nurse's confidence in communication, providing appropriate care, and positivity towards this patient group may be improved.

Psychosocial experiences of chronic illness in individuals with an intellectual disability: A systematic review of the literature.

BACKGROUND: Increased life expectancy has led to an increase in diagnoses of chronic illness in people with an intellectual disability; despite this increase, research about the psychological impact is rare. This review explored the psychosocial experiences of chronic illness in adults with an intellectual disability, revealing potential predictors and moderators of these experiences. METHODS: Online databases were systematically searched to identify relevant literature, using predefined inclusion criteria. Of the 25,058 titles initially identified, 4 were included, that is, those collecting data on people with an intellectual disability and diagnosed with cancer (n = 2), chronic pain (n = 1) and diabetes (n = 1). RESULTS: Narrative synthesis of the data identified six themes, namely, (1) delayed diagnosis, (2) information, communication and understanding, (3) negative psychological consequences, (4) negative physical consequences, (5) social perception and (6) social support. CONCLUSIONS: There are unmet needs within this population, including a lack of assistance in understanding their illness. A substantial gap in the literature should be addressed through further empirical work.

British English translation of the Food Craving Inventory (FCI-UK).

There is evidence for cultural variation in the foods that may be craved. We have designed and tested, in a sample of 234 participants, a UK-specific version of the Food Craving Inventory. A four-factor structure comprising of sweet foods, fast foods, high fat, and complex carbohydrates was extracted. The final scale was analogous with the original US scale, and shared similar associations with external eating and dietary restraint, although no association was found with BMI. The measure has potential to contribute to the development of theoretical understanding of food craving, and to measuring outcomes in intervention studies and clinical samples.

Women's experiences of using drugs in weight management. An interpretative phenomenological analysis.

This study examines the experiences of women using drugs in weight management. Whilst some of the commonly used substances have been deemed to be safe, most, if not all, still have potentially dangerous side effects for the individual. Five women spoke of their experiences of using drugs in weight management through semi-structured interviews. These were analysed using Interpretative Phenomenological Analysis (IPA). Three themes arose from the analysis: the challenges of weight management, the appealing aspects of drug use and emotion and control. Findings revealed that participants believed they need to be thin in order to be happy and they found weight management difficult due to a variety of internal and external aspects. Drug use was seen as an easier and guaranteed way to manage weight. Participants felt that the use of substances for the purpose of weight management was erroneous with shame attached to it, and yet, drugs helped them to feel in control of their lives, their weight and also acted as a maladaptive emotion regulation strategy. Clinical implications and suggestions for future research are discussed.

The mini-mental adjustment to cancer scale: re-analysis of its psychometric properties in a sample of 160 mixed cancer patients.

BACKGROUND: The mini-Mental Adjustment to Cancer Scale is designed to assess psychological responses to cancer diagnosis and is widely used in research and clinical practice. Recent evidence demonstrates adequate convergent validity but inconsistent internal consistency and factor structure. This study aimed to provide a parsimonious factor structure with clinical utility. METHODS: Repeated measures data were collected from 160 cancer patients (mixed illness type) at diagnosis and 3-month follow-up. Principal axis factoring with oblimin rotation was used. The number of factors was decided using parallel analysis. The resultant factors were compared against the recommended five-factor structure on internal consistency (Cronbach's alpha) and test-retest reliability and convergent validity (Pearson's correlation). RESULTS: Parallel analysis suggested that a four-factor model optimally fits these data. Two of these-cognitive avoidance and fighting spirit-are equivalent to the original factor structure. Redistribution of the remaining items resulted in factors of cognitive distress and emotional distress. Internal consistency and test-retest reliability of the new four-factor structure are equivalent, but convergent validity is much improved overall when compared with a five-factor structure, with the exception of the fighting spirit factor. CONCLUSIONS: The revised four-factor structure represents a more psychometrically sound measure of psychological adjustment in the current dataset. Findings related to the larger cognitive distress factor are congruent with data from foreign-language validation studies. The brevity of this improved measure may make it easier to administer in the clinical setting.