'I presumed the pain would eventually get better by itself'; challenges with access to rehabilitation for upper limb dysfunction after breast cancer treatment - Descriptive and qualitative findings from a cross-sectional survey.

PURPOSE: Sixty percent of breast cancer patients develop persistent upper limb pain and dysfunction, but only limited knowledge exists about how these symptoms relate to rehabilitation access. METHODS: A postal survey was sent to patients treated at a London University Teaching Hospital (2018-2020). Data were collected on pain (Pain Detect), shoulder function (Disability of Shoulder Arm and Hand (DASH)), quality-of-life (QoL) (EQ-5D-5L), and clinical characteristics, including treatment and access to rehabilitation. The free-text section invited patients' comments on upper limb symptoms and management strategies, which were analysed thematically. Quantitative data were analysed descriptively, and the medians were examined with Mann-Whitley U-Tests or Kruskal-Wallis Test. RESULTS: Of 511 patients surveyed, 162 (32 %) questionnaires were returned and analysed. Respondents' mean age was 62 years (SD 11.3). The majority had Sentinel Node Biopsy 71 % (116/162) and mastectomy 61 % (99/162). 73 % (119/162) reported pain. Mean (SD) Pain Detect and DASH Score were respectively 11.07 (7) and 21.7 (21.5), with 51 % recording significant shoulder dysfunction, and only 28 % reporting access to rehabilitation. Individuals with neuropathic pain had significantly higher median (range) DASH score 60.8 (35.8, 75.0) p = 0.000. Median DASH score for sedentary individuals was significantly higher 22.9 (7.9, 31.8) p = 0.0009. Free-text analysis revealed persistent, progressive symptoms, mixed attitudes towards exercise and variations in access to rehabilitation and support. CONCLUSION: Two years following surgery many patients reported significant upper limb symptoms which adversely impact on QoL. However, approximately two thirds did not access potentially beneficial rehabilitation treatments. There is a need to improve pathways of care.

Examining the key features of specialist health service provision for women with Female Genital Mutilation/Cutting (FGM/C) in the Global North: a scoping review.

Background: Health care for women with Female Genital Mutilation/Cutting (FGM/C) in the Global North is often described as sub-optimal and focused on maternity care. Specialist FGM/C services have emerged with little empirical evidence informing service provision. The objective of this scoping review is to identify the key features of FGM/C specialist care. Methods: The review was conducted in accordance with JBI methodology. Participants: organisations that provide specialist FGM/C care. Concept: components of specialist services. Context: high-income OECD countries. Eligibility criteria included primary research studies of any design from 2012 to 2022, providing a comprehensive description of specialist services. Seven bibliographic databases were searched (MEDLINE, EMBASE, CINAHL, Web of Science, SCOPUS, Cochrane Library and MIC). The components of "specialist" (as opposed to "generalist") services were defined and then applied to an analysis of FGM/C specialist care. FGM/C specialist provision was categorised into primary (essential) and secondary features. Data were extracted and analysed descriptively through charting in tables and narrative summary. Results: Twenty-five papers described 20 unique specialist services across eleven high income countries. Primary features used to identify FGM/C specialist care were:-(i) Named as a Specialist service/clinic: 11/20 (55%); (ii) Identified expert lead: 13/20, (65%), either Midwives, Gynaecologists, Urologist, or Plastic Surgeons; (iii) Offering Specialist Interventions: surgical (i.e., reconstruction and/or deinfibulation) and/or psychological (i.e., trauma and/or sexual counselling); and (iv) Providing multidisciplinary care: 14/20 (70%). Eleven services (in Spain, Sweden, Switzerland, Germany, Italy, Netherlands, France, Belgium, and USA) provided reconstruction surgery, often integrated with psychosexual support. No services in UK, Norway, and Australia offered this. Six services (30%) provided trauma therapy only; 25% sexual and trauma therapy; 15% sexual therapy only; 30% did not provide counselling. Secondary features of specialist care were subdivided into (a) context of care and (b) the content of care. The context related to concepts such as provision of interpreters, cost of care, community engagement and whether theoretical underpinnings were described. Content referred to the model of care, whether safeguarding assessments were undertaken, and health education/information is provided. Conclusion: Overall, the features and composition of FGM/C specialist services varied considerably between, and sometimes within, countries. Global guidelines advocate that specialist care should include access to deinfibulation, mental health support, sexual counselling, and education and information. The review found that these were rarely all available. In some high-income countries women cannot access reconstruction surgery and notably, few services for non-pregnant women mentioned safeguarding. Furthermore, services for pregnant women rarely integrated trauma therapy or psychosexual support. The review highlights a need for counselling (both trauma and psychosexual) and culturally-appropriate sensitive safeguarding assessments to be embedded into care provision for non-pregnant as well as pregnant women. Further research is needed to extract the features of specialist services into a comprehensive framework which can be used to examine, compare, and evaluate FGM/C clinical specialist care to determine which clinical features deliver the best outcomes. Currently a geographical lottery appears to exist, not only within the UK, but also across the Global North.

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.

Identifying determinants of adherence to adjuvant endocrine therapy following breast cancer: A systematic review of reviews.

BACKGROUND: In oestrogen-receptor positive breast cancer, daily oral adjuvant endocrine therapy (ET) for at least 5 years significantly reduces risks of recurrence and breast cancer-specific mortality. However, many women are poorly adherent to ET. Development of effective adherence support requires comprehensive understanding of influences on adherence. We undertook an umbrella review to identify determinants of ET adherence. METHODS: We searched PubMed, Embase, CINAHL, PsycINFO, Cochrane and PROSPERO (inception to 08/2022) to identify systematic reviews on factors influencing ET adherence. Abstracted determinants were mapped to the World Health Organization's dimensions of adherence. Reviews were quality appraised and overlap assessed. RESULTS: Of 5732 citations screened, 17 reviews were eligible (9 quantitative primary studies; 4 qualitative primary studies; 4 qualitative or quantitative studies) including 215 primary papers. All five WHO dimensions influenced ET non-adherence: The most consistently identified non-adherence determinants were patient-related factors (e.g. lower perceived ET necessity, more treatment concerns, perceptions of ET 'cons' vs. 'pros'). Healthcare system/healthcare professional-related factors (e.g. perceived lower quality health professional interaction/relationship) were also important and, to a somewhat lesser extent, socio-economic factors (e.g. lower levels of social/economic/material support). Evidence was more mixed for medication-related and condition-related factors, but several may be relevant (e.g. experiencing side-effects, cost). Potentially modifiable factors are more influential than non-modifiable/fixed factors (e.g. patient characteristics). CONCLUSIONS: The evidence-base on ET adherence determinants is extensive. Future empirical studies should focus on less well-researched areas and settings. The determinants themselves are numerous and complex in indicating that adherence support should be multifaceted, addressing multiple determinants.

Development of the 'ACT now & check-it-out' intervention to support patient-initiated follow up for Head and Neck cancer patients.

OBJECTIVE: Current Head and Neck cancer (HNC) follow-up models are considered sub-optimal at detecting recurrences. We describe the development of a patient-initiated follow up (PIFU) trial intervention support package, to support HNC patients to engage in PIFU self-care behaviors. METHODS: An intervention mapping approach, informed by evidence synthesis, theory and stakeholder consultation, guided intervention development. Data sources included a patient survey (n = 144), patient interviews (n = 30), 7 workshops with patients (n = 25) and caregivers (n = 3) and 5 workshops with health professionals (n = 21). RESULTS: The intervention ('ACT now & check-it-out') comprises an education and support session with a health professional and an app and/or a booklet for patients. The main targets for change in patient self-care behaviors were: assessing what is normal for them; regularly checking for symptom changes; prompt help-seeking for persistent/new symptoms; self-management of fear of recurrence; engaging with the intervention over time. CONCLUSIONS: We have developed an evidence, person and theory-based intervention to support PIFU self-care behaviors in HNC patients. PRACTICE IMPLICATIONS: A trial is underway to assess the effectiveness and cost-effectiveness of the intervention. If successful, this intervention could be adapted for patients with other cancers or diseases, which is important given the recent shift towards PIFU pathways.

Patients' Experiences of a Sarcoma Diagnosis: A Process Mapping Exercise of Diagnostic Pathways.

Patients with sarcoma often report prolonged time to diagnosis, which is attributed to the rarity of sarcoma and the low awareness of pre-diagnostic signs and symptoms. AIMS: To describe patients' experiences of pre-diagnostic signs/symptoms and pathways to diagnosis, including where help was sought, and the processes involved. METHODS: Mixed methods involving quantitative, qualitative and inductive thematic analyses using novel process mapping of patient journey data, as reported by the patients. We examined the time from symptom onset to first professional presentation (patient interval, PI), first consultation to diagnostic biopsy, first consultation to diagnosis (diagnostic interval) and first presentation to diagnosis (total interval). RESULTS: A total of 87 interviews were conducted over 5 months in 2017. Of these, 78 (40 males/38 females) were included. The sarcoma subtypes were bone (n = 21), soft tissue (n = 41), head and neck (n = 9) and gastro-intestinal (GIST; n = 7). Age at diagnosis was 13-24 (n = 7), 25-39 (n = 23), 40-64 (n = 34) and 65+ (n = 14) years. The median PI was 13 days (1-4971) and similar between sarcoma subtypes, with the exception of GIST (mPI = 2 days, (1-60). The longest mPI (31 days, range 4-762) was for those aged 13-24 years. The median diagnostic interval was 87.5 (range 0-5474 days). A total of 21 patients were misdiagnosed prior to diagnosis and symptoms were commonly attributed to lifestyle factors. CONCLUSIONS: Prolonged times to diagnosis were experienced by the majority of patients in our sample. Further research into the evolution of pre-diagnostic sarcoma symptoms is required to inform awareness interventions.

Perspectives of healthcare professionals and older patients on shared decision-making for treatment escalation planning in the acute hospital setting: a systematic review and qualitative thematic synthesis.

Background: Shared Decision-Making (SDM) between patients and clinicians is increasingly considered important. Treament Escalation Plans (TEP) are individualised documents outlining life-saving interventions to be considered in the event of clinical deterioration. SDM can inform subjective goals of care in TEP but it remains unclear how much it is considered beneficial by patients and clinicians. We aimed to synthesise the existing knowledge of clinician and older patient (generally aged ≥65 years) perspectives on patient involvement in TEP in the acute setting. Methods: Systematic database search was performed in MEDLINE, EMBASE, PsycInfo and CINAHL databases as well as grey literature from database inception to June 8, 2023, using the Sample (older patients, clinicians, acute setting; studies relating to patients whose main diagnosis was cancer or single organ failure were excluded as these conditions may have specific TEP considerations), Phenomenon of Interest (Treatment Escalation Planning), Design (any including interview, observational, survey), Evaluation (Shared Decision-Making), Research type (qualitative, quantitative, mixed methods) tool. Primary data (published participant quotations, field notes, survey results) and descriptive author comments were extracted and qualitative thematic synthesis was performed to generate analytic themes. Quality assessment was made using the Critical Appraisal Skills Programme and Mixed Methods Appraisal Tools. The GRADE-CERQual (Grading of Recommendations Assessment, Development and Evaluation-Confidence in the Evidence from Reviews of Qualitative research) approach was used to assess overall confidence in each thematic finding according to methodology, coherence, adequacy and relevance of the contributing studies. The study protocol was registered on PROSPERO, CRD42022361593. Findings: Following duplicate exclusion there were 1916 studies screened and ultimately 13 studies were included, all from European and North American settings. Clinician-orientated themes were: treatment escalation is a medical decision (high confidence); clinicians want the best for their patients amidst uncertainty (high confidence); involving patients and families in decisions is not always meaningful and can involve conflict (high confidence); treatment escalation planning exists within the clinical environment, organisation and society (moderate confidence). Patient-orientated themes were: patients' relationships with Treatment Escalation Planning are complex (low confidence); interactions with doctors are important but communication is not always easy (moderate confidence); patients are highly aware of their families when considering TEP (moderate confidence). Interpretation: Based on current evidence, TEP decisions appear dominated by clinicians' perspectives, motivated by achieving the best for patients and challenged by complex decisions, communication and environmental factors; older patients' perspectives have seldom been explored, but their input on decisions may be modest. Presenting the context and challenge of SDM during professional education may allow reflection and a more nuanced approach. Future research should seek to understand what approach to TEP decision-making patients and clinicians consider to be optimum in the acute setting so that a mutually acceptable standard can be defined in policy. Funding: HCA International and the NIHR Imperial Biomedical Research Centre.

Is personalised prehabilitation feasible to implement for patients undergoing oncological treatment for lung cancer at a London teaching hospital? Protocol of a feasibility trial.

INTRODUCTION: There is significant potential to improve outcomes for patients with lung cancer in terms of quality of life and survival. There is some evidence that prehabilitation can help, but, to date, this has only been tested in surgical populations, despite 70%-80% of patients with lung cancer in the UK receiving non-surgical treatment. The physiological and psychological benefits of prehabilitation seen in surgical patients could be extrapolated to those receiving non-surgical treatment, particularly in such a poor prognosis group. With patients and healthcare professionals, we have co-designed a personalised and evidence-based prehabilitation programme. This draws on a conceptual framework that aligns with patient values and needs as well as functional goals. We aim to investigate whether this programme is feasible to implement and evaluate in clinical practice. METHODS AND ANALYSIS: An open-label, single-group feasibility study incorporating quantitative assessments, a qualitative free text questionnaire and reflective field notes. Thirty participants will be recruited over an eight-month period from a single London teaching hospital. All recruited participants will receive a personalised prehabilitation programme during their oncological treatment. This includes a one-hour face-to-face appointment prior to, at week three and at week six of their treatment regimen as well as a weekly telephone call. Interventions including nutrition, physical activity and psychological well-being are stratified according to a patient's priorities, level of readiness and expressed needs. The primary outcome will be feasibility of the personalised prehabilitation programme in clinical practice by investigating areas of uncertainty regarding patient recruitment, attrition, treatment fidelity, intervention adherence and acceptability of study outcome measures. Secondary outcomes will include quality of life, functional capacity and grip strength. ETHICS AND DISSEMINATION: Ethical approval has been obtained from the Health Research Authority (reference number 22/PR/0390). Results of this study will be disseminated through publication in peer-reviewed articles, presentations at scientific conferences and in collaboration with patient and public involvement representatives. TRIAL REGISTRATION NUMBER: NCT05318807.

Development of the HT&Me intervention to support women with breast cancer to adhere to adjuvant endocrine therapy and improve quality of life.

BACKGROUND: Breast cancer is the most common cancer in women worldwide. Approximately 80% of breast cancers are oestrogen receptor positive (ER+). Patients treated surgically are usually recommended adjuvant endocrine therapy (AET) for 5-10 years. AET significantly reduces recurrence, but up to 50% of women do not take it as prescribed. OBJECTIVE: To co-design and develop an intervention to support AET adherence and improve health-related quality-of-life (QoL) in women with breast cancer. METHODS: Design and development of the HT&Me intervention took a person-based approach and was guided by the Medical Research Council framework for complex interventions, based on evidence and underpinned by theory. Literature reviews, behavioural analysis, and extensive key stakeholder involvement informed 'guiding principles' and the intervention logic model. Using co-design principles, a prototype intervention was developed and refined. RESULTS: The blended tailored HT&Me intervention supports women to self-manage their AET. It comprises initial and follow-up consultations with a trained nurse, supported with an animation video, a web-app and ongoing motivational 'nudge' messages. It addresses perceptual (e.g. doubts about necessity, treatment concerns) and practical (e.g. forgetting) barriers to adherence and provides information, support and behaviour change techniques to improve QoL. Iterative patient feedback maximised feasibility, acceptability, and likelihood of maintaining adherence; health professional feedback maximised likelihood of scalability. CONCLUSIONS: HT&Me has been systematically and rigorously developed to promote AET adherence and improve QoL, and is complemented with a logic model documenting hypothesized mechanisms of action. An ongoing feasibility trial will inform a future randomised control trial of effectiveness and cost-effectiveness.

Lifestyle coaching is feasible in fatigued brain tumor patients: A phase I/feasibility, multi-center, mixed-methods randomized controlled trial.

Background: There are no effective treatments for brain tumor-related fatigue. We studied the feasibility of two novel lifestyle coaching interventions in fatigued brain tumor patients. Methods: This phase I/feasibility multi-center RCT recruited patients with a clinically stable primary brain tumor and significant fatigue (mean Brief Fatigue Inventory [BFI] score ≥ 4/10). Participants were randomized in a 1-1-1 allocation ratio to: Control (usual care); Health Coaching ("HC", an eight-week program targeting lifestyle behaviors); or HC plus Activation Coaching ("HC + AC", further targeting self-efficacy). The primary outcome was feasibility of recruitment and retention. Secondary outcomes were intervention acceptability, which was evaluated via qualitative interview, and safety. Exploratory quantitative outcomes were measured at baseline (T0), post-interventions (T1, 10 weeks), and endpoint (T2, 16 weeks). Results: n = 46 fatigued brain tumor patients (T0 BFI mean = 6.8/10) were recruited and 34 were retained to endpoint, establishing feasibility. Engagement with interventions was sustained over time. Qualitative interviews (n = 21) suggested that coaching interventions were broadly acceptable, although mediated by participant outlook and prior lifestyle. Coaching led to significant improvements in fatigue (improvement in BFI versus control at T1: HC=2.2 points [95% CI 0.6, 3.8], HC + AC = 1.8 [0.1, 3.4], Cohen's d [HC] = 1.9; improvement in FACIT-Fatigue: HC = 4.8 points [-3.7, 13.3]; HC + AC = 12 [3.5, 20.5], d [HC and AC] = 0.9). Coaching also improved depressive and mental health outcomes. Modeling suggested a potential limiting effect of higher baseline depressive symptoms. Conclusions: Lifestyle coaching interventions are feasible to deliver to fatigued brain tumor patients. They were manageable, acceptable, and safe, with preliminary evidence of benefit on fatigue and mental health outcomes. Larger trials of efficacy are justified.

Assessing the unmet needs of patients with advanced cancer treated by biological and precision therapies: protocol for TARGET, a mixed methods study.

INTRODUCTION: Biological and precision therapies are increasingly used in cancer treatment. Although they may improve survival, they are also associated with various-and unique-adverse effects, which can be long lasting. Little is known about the experiences of people treated with these therapies. Moreover, their supportive care needs have not been fully explored. Consequently, it is unclear whether existing instruments adequately capture the unmet needs of these patients. The TARGET study seeks to address these evidence gaps by exploring the needs of people treated with these therapies with the aim of developing an unmet needs assessment instrument for patients on biological and precision therapies. METHODS AND ANALYSIS: The TARGET study will adopt a multi-methods design involving four Workstreams (1) a systematic review to identify, describe and assess existing unmet needs instruments in advanced cancer; (2) qualitative interviews with patients on biological and precision therapies, and their healthcare professionals, to explore experiences and care needs; (3) development and piloting of a new (or adapted) unmet needs questionnaire (based on the findings of Workstream 1 and Workstream 2) designed to capture the supportive care needs of these patients; and finally, (4) a large-scale patient survey using the new (or modified) questionnaire to determine (a) the psychometric properties of the questionnaire, and (b) the prevalence of unmet needs in these patients. Based on the broad activity of biological and precision therapies, the following cancers will be included: breast, lung, ovarian, colorectal, renal and malignant melanoma. ETHICS AND DISSEMINATION: This study was approved by National Health Service (NHS) Heath Research Authority Northeast Tyne and Wear South Research Ethics Committee (REC ref: 21/NE/0028). Dissemination of the research findings will take several formats to reach different audiences, including patients, healthcare professionals and researchers.

Informing interventions to improve uptake of adjuvant endocrine therapy in women with breast cancer: a theoretical-based examination of modifiable influences on non-adherence.

PURPOSE: To inform intervention development, we measured the modifiable determinants of endocrine therapy (ET) non-adherence in women with breast cancer, using the Theoretical Domains Framework (TDF) and examined inter-relationships between these determinants and non-adherence using the Perceptions and Practicalities Approach (PAPA). METHODS: Women with stages I-III breast cancer prescribed ET were identified from the National Cancer Registry Ireland (N = 2423) and invited to complete a questionnaire. A theoretically based model of non-adherence was developed using PAPA to examine inter-relationships between the 14 TDF domains of behaviour change and self-reported non-adherence. Structural equation modelling (SEM) was used to test the model. RESULTS: A total of 1606 women participated (response rate = 66%) of whom 395 (25%) were non-adherent. The final SEM with three mediating latent variables (LVs) (PAPA Perceptions: TDF domains, Beliefs about Capabilities, Beliefs about Consequences; PAPA Practicalities: TDF domain, Memory, Attention, Decision Processes and Environment) and four independent LVs (PAPA Perceptions: Illness intrusiveness; PAPA Practicalities: TDF domains, Knowledge, Behaviour Regulation; PAPA External Factors: TDF domain, Social Identity) explained 59% of the variance in non-adherence and had an acceptable fit (χ2(334) = 1002, p < 0.001; RMSEA = 0.03; CFI = 0.96 and SRMR = 0.07) Knowledge had a significant mediating effect on non-adherence through Beliefs about Consequences and Beliefs about Capabilities. Illness intrusiveness had a significant mediating effect on non-adherence through Beliefs about Consequences. Beliefs about Consequences had a significant mediating effect on non-adherence through Memory, Attention, Decision Processesg and Environment. CONCLUSIONS: By underpinning future interventions, this model has the potential to improve ET adherence and, hence, reduce recurrence and improve survival in breast cancer.

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.

A Qualitative Study of the Factors Influencing Patients' Experience of Soft Tissue Sarcoma in the United Kingdom.

BACKGROUND: Treatment of soft tissue sarcoma frequently involves extensive surgery, loss of mobility, and complex rehabilitation programs. Poorer patient-reported outcomes are reported in comparison to those from patients with other cancer types. Understanding patient experience is therefore important to support patients and improve care. OBJECTIVE: The aim of this study was an in-depth exploration of patients' experience of being diagnosed with soft tissue sarcoma. METHODS: Semistructured interviews and focus groups were conducted with 68 patients with soft tissue sarcoma (59% female; aged 23-82 years). These were analyzed using adapted framework analysis. RESULTS: Two overarching themes explained the factors influencing patients' experiences: individual and social factors to manage the impact of soft tissue sarcoma; and context and processes of care. Access to professionals with sarcoma expertise and services in specialist hospitals had an impact on patients' well-being. Lack of access to specialist services and coordinated care were associated with worse experiences. These were influenced by age and support from family/friends/other patients and were crucial in patients' adaptation to living with and beyond a sarcoma diagnosis. CONCLUSION: We describe factors that both negatively and positively influenced the experience of patients with soft tissue sarcoma. Access to specialist soft tissue sarcoma and rehabilitation services and support tailored to patients' age and disease trajectory are needed to improve these experiences. IMPLICATION FOR PRACTICE: Nurses are important for helping patients manage the long-term effects and directing them to supportive care services. Rehabilitation services need to be available and easily accessible.

Considerations for multimodal prehabilitation in women with gynaecological cancers: a scoping review using realist principles.

BACKGROUND: There is increasing recognition that prehabilitation is important as a means of preparing patients physically and psychologically for cancer treatment. However, little is understood about the role and optimal nature of prehabilitation for gynaecological cancer patients, who usually face extensive and life-changing surgery in addition to other treatments that impact significantly on physiological and psychosexual wellbeing. REVIEW QUESTION: This scoping review was conducted to collate the research evidence on multimodal prehabilitation in gynaecological cancers and the related barriers and facilitators to engagement and delivery that should be considered when designing a prehabilitation intervention for this group of women. METHODS: Seven medical databases and four grey literature repositories were searched from database inception to September 2021. All articles, reporting on multimodal prehabilitation in gynaecological cancers were included in the final review, whether qualitative, quantitative or mixed-methods. Qualitative studies on unimodal interventions were also included, as these were thought to be more likely to include information about barriers and facilitators which could also be relevant to multimodal interventions. A realist framework of context, mechanism and outcome was used to assist interpretation of findings. RESULTS: In total, 24 studies were included in the final review. The studies included the following tumour groups: ovarian only (n = 12), endometrial only (n = 1), mixed ovarian, endometrial, vulvar (n = 5) and non-specific gynaecological tumours (n = 6). There was considerable variation across studies in terms of screening for prehabilitation, delivery of prehabilitation and outcome measures. Key mechanisms and contexts influencing engagement with prehabilitation can be summarised as: (1) The role of healthcare professionals and organisations (2) Patients' perceptions of acceptability (3) Factors influencing patient motivation (4) Prehabilitation as a priority (5) Access to prehabilitation. IMPLICATIONS FOR PRACTICE: A standardised and well evidenced prehabilitation programme for women with gynaecological cancer does not yet exist. Healthcare organisations and researchers should take into account the enablers and barriers to effective engagement by healthcare professionals and by patients, when designing and evaluating prehabilitation for gynaecological cancer patients.

Development of a patient-reported experience questionnaire for patients with sarcoma: the Sarcoma Assessment Measure (SAM).

PURPOSE: The aim of the study was to develop a patient-reported outcome measure for patients with sarcoma-the Sarcoma Assessment Measure (SAM). METHODS AND RESULTS: The systematic development of SAM included a three-stage, mixed-methods study using semi-structured interviews, focus groups and questionnaires, with all stages involving patients from across the United Kingdom. In-depth interviews were conducted with 121 patients (50% male; aged 13-82; with soft tissue sarcoma (62%), bone tumours (28%) and gastrointestinal stromal tumours (10%)). Content analysis of the interview transcripts identified 1415 post-diagnosis experience statements. Experience statements were reviewed, repetition was removed and sentences were refined to form 395 'items' which were included in an Item Reduction Questionnaire (IRQ) grouped as physical, emotional, social and financial wellbeing and sexuality. The IRQ was completed by 250 patients who rated each item on importance and worry. Items with a mean score above 5 (6 in the emotional domain) were removed, which reduced the list to 166 items. After review by the research team, 23 clinicians and 34 patients, 66 items were retained to test content validity. Items with a content validity ratio of < .33 were removed. Cognitive interviews were conducted with 10 patients on the final 22 items to test comprehension. Minor changes were made to four. CONCLUSION: SAM comprises of 22 items reflecting physical, emotional, social, financial wellbeing and sexuality. This systematic process of using patient experience to develop the content of SAM will ensure that it measures what is important to patients.

Electronic cigarettes as a smoking cessation aid for patients with cancer: beliefs and behaviours of clinicians in the UK.

OBJECTIVES: To explore UK clinicians' beliefs and behaviours around recommending e-cigarettes as a smoking cessation aid for patients with cancer. DESIGN: Cross-sectional online survey. SETTING: England, Wales, Scotland and Northern Ireland. PARTICIPANTS: Clinicians involved in the care of patients with cancer. PRIMARY AND SECONDARY OUTCOMES: Behavioural Change Wheel capability, opportunity and motivation to perform a behaviour, knowledge, beliefs, current practice around e-cigarettes and other smoking cessation practices. METHOD: Clinicians (n=506) completed an online survey to assess beliefs and behaviours around e-cigarettes and other smoking cessation practices for patients with cancer. Behavioural factors associated with recommending e-cigarettes in practice were assessed. RESULTS: 29% of clinicians would not recommend e-cigarettes to patients with cancer who continue to smoke. Factors associated with recommendation include smoking cessation knowledge (OR 1.56, 95% CI 1.01 to 2.44) and e-cigarette knowledge (OR 1.64, 95% CI 1.06 to 2.55), engagement with patients regarding smoking cessation (OR 2.12, 95% CI 1.12 to 4.03), belief in the effectiveness of e-cigarettes (OR 2.36 95% CI 1.61 to 3.47) and belief in sufficient evidence on e-cigarettes (OR 2.08 95% CI 1.10 to 4.00) and how comfortable they felt discussing e-cigarettes with patients (OR 1.57 95% CI 1.04 to 2.36). CONCLUSION: Many clinicians providing cancer care to patients who smoke do not recommend e-cigarettes as a smoking cessation aid and were unaware of national guidance supporting recommendation of e-cigarettes as a smoking cessation aid.

Qualitative study exploring patients experiences of being diagnosed and living with primary bone cancer in the UK.

OBJECTIVE: The aim of this study is to explore the experiences of patients with primary bone cancer. DESIGN: Qualitative study design using semistructured interviews and focus groups. SETTING: Hospitals across the UK and recruitment through UK sarcoma charities and support groups. METHODS: Semistructured telephone/face-to-face interviews and focus groups with a purposive sample of 26 participants. Data were analysed using Framework Analysis. PARTICIPANTS: Patients (n=26) with primary bone cancer aged 13-77 years. The majority were male (69%), white (85%); diagnosed within 4 years (54%); and had lower limb sarcoma (65%). Ten participants had undergone an upper/lower limb amputation (39%). RESULTS: The health-related quality-of-life domains of physical, emotional and social well-being and healthcare professionals' role were the overarching themes of analysis. The physical domain anchored patient experiences. The intensity and length of treatment, the severity of side-effects, the level of disability after surgery and the uncertainty of their prognosis had an impact on patient's self-image, confidence, mood and identity, and caused disruption to various aspects of the patients' social life, including their relationships (emotional and sexual) and participation in work/school and leisure activities. Adaptation was influenced by the way patients dealt with stress and adversity, with some finding a new outlook in life, and others struggling with finding their 'new normal'. Family and friends were the main source of support. Healthcare professional's expertise and support was critical. Rehabilitation services had a considerable role in patient's physical and emotional well-being, but inequitable access to these services was apparent. CONCLUSIONS: This study described the impact of primary bone cancer on patients' well-being and adjustment over time with the identification of influencing factors of better/worse experiences. It showed that impact was felt after end of treatment and affected patients at different life stages. Holistic models of survivorship care are needed.