Publications
114 results found
Hulbert-Williams L, Hulbert-Williams NJ, Martins A, et al., 2024, The Sarcoma Assessment Measure (SAM): Preliminary Psychometric Validation of a Novel Patient-Reported Outcome Measure, Cancers, Vol: 16
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.
Martins A, Bennister L, Fern LA, et al., 2024, A Qualitative Study of the Factors Influencing Patients' Experience of Soft Tissue Sarcoma in the United Kingdom., Cancer Nurs, Vol: 47, Pages: 84-92
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.
Todd A, Waldron C, McGeagh L, et al., 2024, Identifying determinants of adherence to adjuvant endocrine therapy following breast cancer: A systematic review of reviews., Cancer Med, Vol: 13
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, address
Matheson L, Greaves C, Duda JL, et al., 2024, Development of the 'ACT now & check-it-out' intervention to support patient-initiated follow up for Head and Neck cancer patients., Patient Educ Couns, Vol: 119
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.
Albert J, Wells M, Evans C, 2023, Analysis of a specialist service for non-pregnant women with female genital mutilation: 2008–2019, British Journal of Midwifery, Vol: 31, Pages: 610-621, ISSN: 0969-4900
BackgroundFemale genital mutilation affects an estimated 200 million women and girls worldwide. This article examines a midwife-led service that integrates health advocates and counsellors into a model of holistic woman-centred care and was the blueprint for new national clinics opened in 2019.MethodsThis retrospective case note review examined referral patterns, clinical findings and interventions over 11 years at a UK specialist clinic for non-pregnant women with female genital mutilation.ResultsMore than 2000 consultations were conducted. Two thirds of women had type 3 mutilation. Most were Somali (73.4%) with 18 other ethnic backgrounds represented. Women presented with dysuria, dyspareunia/apareunia, dysmenorrhea, recurrent infections, post-traumatic stress disorder, nightmares, flashbacks and psychosexual issues. Interventions included deinfibulation under local anaesthetic (many as same day walk-in cases), clinical reports for asylum applications and trauma counselling. One in 10 attendees were healthcare professionals/carers. Nearly 5% were refugees/asylum seekers. There were 12 safeguarding referrals, three cases of mandatory reporting duty and two protection orders. Intersectional violence was frequently reported among women of West African origin.ConclusionsSignificant numbers of non-pregnant women require specialist help. Innovative means to publicise clinics and routine enquiry during gynaecological consultations and GP registration, could ensure earlier signposting to services. Deinfibulation can be safely performed by an expert midwife in a community or outpatient setting.
Vindrola-Padros C, Fern LA, Gerrand C, et al., 2023, Experiences of fear of recurrence in patients with sarcoma, Journal of Psychosocial Oncology Research and Practice, Vol: 5
Background: Fear of cancer recurrence (FCR) is often described as the most distressing consequence of cancer and has a negative impact on quality of life. There have been few investigations into the FCR in patients with sarcomas. We sought to explore the patient’s FCR after a sarcoma diagnosis to determine when these fears were presented and the strategies patients used to address these fears. Methods: This was a secondary analysis of qualitative semi-structured interview data from patients with sarcoma, as part of a study to develop a patient-reported outcome measure. This study included 121 patients from across the United Kingdom aged 13–82 years. Telephone and face-to-face interviews focused on the experiences of living with and beyond a sarcoma diagnosis, based on the domains of quality of life (physical, emotional, and social well-being). A secondary analysis was performed using the CommonSense Model. Results: The following four key themes were identified: triggers for FCR (symptoms and events), discussion of FCR, consequences of FCR (negative impact on quality of life), and strategies used to deal with FCR. Conclusion: Patients with sarcoma reported a FCR at different stages of treatment and how these fears played a role in their daily lives. Despite these experiences, the identification and management of FCR have not been reported as a core component of routine clinical practice.
Martin S, Clark SE, Gerrand C, et al., 2023, Patients' Experiences of a Sarcoma Diagnosis: A Process Mapping Exercise of Diagnostic Pathways, CANCERS, Vol: 15
Warner BE, Lound A, Grailey K, et al., 2023, 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, EClinicalMedicine, Vol: 62, Pages: 1-19, ISSN: 2589-5370
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 JUN08, 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 America
Stewart S-JF, Slodkowska-Barabasz J, McGeagh L, et al., 2023, Development of the HT&Me intervention to support women with breast cancer to adhere to adjuvant endocrine therapy and improve quality of life, BREAST, Vol: 70, Pages: 32-40, ISSN: 0960-9776
Wade-Mcbane K, King A, Urch C, et al., 2023, Is personalised prehabilitation feasible to implement for patients undergoing oncological treatment for lung cancer at a London teaching hospital? Protocol of a feasibility trial, BMJ Open, Vol: 13, Pages: 1-9, ISSN: 2044-6055
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 lung cancer patients 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 wellbeing 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 app
Crow J, Savage M, Gardner L, et al., 2023, What follow-up interventions, programmes and pathways exist for minor stroke survivors after discharge from the acute setting? A scoping review., BMJ Open, Vol: 13, Pages: 1-14, ISSN: 2044-6055
OBJECTIVE: To identify the breadth and range of follow-up interventions currently provided to people after minor stroke with a focus on the definitions used for minor stroke, intervention components, intervention theory and outcomes used. These findings will inform the development and feasibility testing of a pathway of care. DESIGN: Scoping review. SEARCH STRATEGY: The final search was run in January 2022. Five databases were searched-EMBASE, MEDLINE, CINAHL, British Nursing Index and PsycINFO. Grey literature was also searched. Title and abstract screening and full-text reviews were conducted by two researchers and a third was involved when differences of opinion existed. A bespoke data extraction template was created, refined and then completed. The Template for Intervention Description and Replication (TIDieR) checklist was used to describe interventions. RESULTS: Twenty-five studies, using a range of research methodologies were included in the review. A range of definitions were used for minor stroke. Interventions focused largely on secondary prevention and management of increased risk of further stroke. Fewer focused on the management of hidden impairments experienced after minor stroke. Limited family involvement was reported and collaboration between secondary and primary care was seldom described. The intervention components, content, duration and delivery were varied as were the outcome measures used. CONCLUSION: There is an increasing volume of research exploring how best to provide follow-up care to people after minor stroke. Personalised, holistic and theory-informed interdisciplinary follow-up is needed that balances education and support needs with adjustment to life after stroke.
Warner BE, Harry A, Wells M, et al., 2023, Correction to: Escalation to intensive care for the older patient. An exploratory qualitative study of patients aged 65 years and older and their next of kin during the COVID-19 pandemic: the ESCALATE study., Age and Ageing, Vol: 52, ISSN: 0002-0729
Newington L, Alexander CM, Wells M, et al., 2023, Development of a framework and research impact capture tool for nursing, midwifery, allied health professions, healthcare science, pharmacy and psychology (NMAHPPs), BMC Health Services Research, Vol: 23, ISSN: 1472-6963
Background:There is an ambitious target to create a UK clinical academic workforce representing 1% of clinicians from nursing, midwifery, the allied health professions, healthcare science, pharmacy and psychology (NMAHPPs). Understanding and recording the impact that clinical academics make across healthcare services is crucial if we are to grow, value and support this highly skilled workforce group. However, it is currently difficult to systematically record, collate and report the impacts associated with NMAHPP research activity. The aims of this project were to i) develop a framework outlining the impacts that were important for key stakeholder groups, and ii) create and pilot a research impact capture tool to record these impacts.Methods:The framework was developed from the existing literature. It was refined, remodelled and approved by multidisciplinary stakeholder involvement, including patient and public representatives, healthcare managers and research-active clinicians. The framework was converted into a series of questions to create an electronic research impact capture tool, which was also refined through feedback from these stakeholder groups. The impact capture tool was piloted with research-active clinicians across a large NHS Trust and its associated organisations.Results:The impact framework contained eight elements: clinical background, research and service improvement activities, research capacity building, research into practice, patients and service users, research dissemination, economics and research funding, and collaborations. Thirty individuals provided data for the research impact capture tool pilot (55% response rate). Respondents reported a range of positive impacts representing all elements of the framework. Importantly, research-activity appeared to be a key driver for recruitment and retention in the sample population.Conclusions:The impact capture tool is a feasible method of recording the breadth of impacts associated with NMAHPP res
Crowe L, Brown M, Bojke A, et al., 2023, Assessing the unmet needs of patients with advanced cancer treated by biological and precision therapies: protocol for TARGET, a mixed methods study, BMJ OPEN, Vol: 13, ISSN: 2044-6055
Tallant J, Pakzad-Shahabi L, Lambert SD, et al., 2023, Quality of Life in Caregivers of Patients with Brain Tumours: A Systematic Review and Thematic Analysis, European Journal of Cancer Care, Vol: 2023, Pages: 1-12
<jats:p>Objective. (1) Examine QoL of caregivers of patients with brain tumours compared to population norms and other cancer caregiver groups, (2) appraise the content of quantitative QoL outcome measures utilised, and (3) assess to what extent QoL measures used in research align with caregivers’ priorities. Methods. Systematic literature search of studies including caregivers of brain tumour patients using self-completed assessments of QoL. Extracted data from included studies included quantitative QoL outcome data, QoL outcome measures utilised, and the included QoL domains. The impact of brain tumour patient caregiving was assessed by summarising included data comparing brain tumour caregivers to other cancer caregivers and normative population data. QoL measures utilised by the studies and their domains were extracted, coded, and analysed by themes. The rates of investigation by theme were then compared to existing data on caregiver-own preference in relation to QoL. Results. 49 studies, including 57 outcome measures, incorporating a combined 124 QoL domains. Brain tumour caregivers reported lower QoL outcomes than population norms but similar to other cancer caregiver groups. Thematic analysis of QoL domains generated 7 themes: caregiving burden and adaptation, existential and self, family and social support, finances, information needs, physical symptoms and functioning, and psychological symptoms and wellbeing. The most investigated themes were physical and psychological symptoms, the most important for caregivers themselves were family and social support. Conclusions. Caregiving for brain tumour patients is shown to negatively affect QoL, particularly mental health, burden, and social life. Existing QoL research in caregivers of brain tumour patients predominantly utilises generic QoL measures designed for use in patients and draws a medicalised view of QoL priorities. The few studies using caregiver-specific QoL measures demonstrated closer ali
Zaranko B, Sanford NJ, Kelly E, et al., 2023, Nurse staffing and inpatient mortality in the English National Health Service: a retrospective longitudinal study, BMJ Quality & Safety, Vol: 32, Pages: 254-263, ISSN: 2044-5423
Objective To examine the impact of nursing team size and composition on inpatient hospital mortality.Design A retrospective longitudinal study using linked nursing staff rostering and patient data. Multilevel conditional logistic regression models with adjustment for patient characteristics, day and time-invariant ward differences estimated the association between inpatient mortality and staffing at the ward-day level. Two staffing measures were constructed: the fraction of target hours worked (fill-rate) and the absolute difference from target hours.Setting Three hospitals within a single National Health Service Trust in England.Participants 19 287 ward-day observations with information on 4498 nurses and 66 923 hospital admissions in 53 inpatient hospital wards for acutely ill adult patients for calendar year 2017.Main outcome measure In-hospital deaths.Results A statistically significant association between the fill-rate for registered nurses (RNs) and inpatient mortality (OR 0.9883, 95% CI 0.9773 to 0.9996, p=0.0416) was found only for RNs hospital employees. There was no association for healthcare support workers (HCSWs) or agency workers. On average, an extra 12-hour shift by an RN was associated with a reduction in the odds of a patient death of 9.6% (OR 0.9044, 95% CI 0.8219 to 0.9966, p=0.0416). An additional senior RN (in NHS pay band 7 or 8) had 2.2 times the impact of an additional band 5 RN (fill-rate for bands 7 and 8: OR 0.9760, 95% CI 0.9551 to 0.9973, p=0.0275; band 5: OR 0.9893, 95% CI 0.9771 to 1.0017, p=0.0907).Conclusions RN staffing and seniority levels were associated with patient mortality. The lack of association for HCSWs and agency nurses indicates they are not effective substitutes for RNs who regularly work on the ward.
Wade-Mcbane K, Urch C, Johansson L, et al., 2023, Does prehabilitation provide a model for holistic long-term care? Early insights from a lung cancer feasibility study, Publisher: ELSEVIER IRELAND LTD, Pages: S40-S40, ISSN: 0169-5002
Warner B, Harry A, Wells M, et al., 2023, Escalation to intensive care for the older patient. An exploratory qualitative study of patients aged over 65 years and their next of kin during the COVID-19 pandemic: the ESCALATE study, Age and Ageing, Vol: 52, Pages: 1-13, ISSN: 0002-0729
Background: Older people comprise the majority of hospital medical inpatients so decision-making regarding admission of this cohort to the intensive care unit (ICU) is important. ICU can be perceived by clinicians as overly burdensome for patients and loved ones, and long-term impact on quality of life considered unacceptable, effecting potential bias against admitting older people to ICU. The COVID-19 pandemic highlighted the challenge of selecting those who could most benefit from ICU. Objective: This qualitative study aimed to explore the views and recollections of escalation to ICU from older patients (aged ≥65 years) and next of kin (NoK)who experienced a COVID-19 ICU admission. Setting: The main site was a large NHS Trust in London, which experienced a high burden of COVID-19 cases. Subjects: 30 participants, comprising 12 patients, 7 NoK of survivor and 11 NoK of deceased. Methods: Semi-structured interviews with thematic analysis using a framework approach. Results: There were five major themes: Inevitability, Disconnect, Acceptance, Implications for future decision making and Unique impact of the COVID-19 pandemic. Life was highly valued and ICU perceived to be the only option. Prior understanding of ICU and admission decision-making explanations were limited. Despite benefit of hindsight, having experienced an ICU admission and its consequences, most could not conceptualise thresholds for future acceptable treatment outcomes.Conclusions: In this study of patients ≥65 years and their NoK experiencing an acute ICU admission, survival was prioritised. Despite the ordeal of an ICU stay and its aftermath, the decision to admit and sequelae were considered acceptable.
Saghdaoui LB, Lampridou S, Racaru S, et al., 2023, Healthcare interventions to aid patient self-management of lower limb wounds: A systematic scoping review, International Wound Journal, Vol: 20, Pages: 1304-1315, ISSN: 1742-4801
Chronic lower limb wounds can be described as having the inability to progress through stages of wound healing. Although 80% of lower limb wounds develop as a result of venous insufficiency, other causes include arterial disease and diabetes. In addition to the sustained impact on quality of life, the chronicity of lower limb wounds presents a significant financial burden to healthcare systems. Self-management is a fundamental aspect of the long-term management of chronic illness and its relevance has intensified since the start of the global pandemic. The objective of this systematic scoping review was to define what the self-management of a lower limb wound entails and explore the interventions available to support patients to self-manage. A total of seven articles were evaluated. There was limited consensus regarding the definition and components of self-management in this area. Interventions involved patients participating in additional exercise, wound care, and lifestyle behaviours such as limb elevation and skin care. Only two studies applied theory and only one evaluated participant acceptability of interventions, making it difficult to assess the feasibility of implementation. Although the evidence reviewed provides some insight into the self-management of a lower limb wound, theoretically-guided research is needed in this area.
Cahir C, Bennett K, Dombrowski SU, et al., 2023, Informing interventions to improve uptake of adjuvant endocrine therapy in women with breast cancer: a theoretical-based examination of modifiable influences on non-adherence, SUPPORTIVE CARE IN CANCER, Vol: 31, ISSN: 0941-4355
Petrella A, Storey L, Hulbert-Williams NJ, et al., 2023, Fear of cancer recurrence in patients with Sarcoma in the United Kingdom, Cancers, Vol: 15, Pages: 1-10, ISSN: 2072-6694
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.
Warner BE, Harry A, Wells M, et al., 2023, WAS ICU RIGHT FOR YOU? AN EXPLORATORY QUALITATIVE STUDY OF PATIENTS >=65 YRS AND NEXT OF KIN IN COVID-19:THE ESCALATE STUDY, Publisher: OXFORD UNIV PRESS, ISSN: 0002-0729
Newington L, Alexander C, Kirby P, et al., 2022, Reflections on contributing to health research: A qualitative interview study with research participants and patient advisors, PLoS One, Vol: 17, ISSN: 1932-6203
Objectives:The aims of this study were to explore individuals’ experiences of contributing to health research and to identify the types of impact that are perceived as important by participants or patient and public advisors. Specifically, research led by NMAHPP clinicians (Nursing, Midwifery, Allied health professions, Healthcare science, Psychology and Pharmacy).Methods:Semi-structured one-to-one interviews were conducted with health research participants and patient or public advisors. Interviewees were recruited from five UK sites and via social media. Interview transcripts were analysed using Thematic Analysis to identify key themes and areas of disagreement.Results:Twenty-one interviews were completed, and four main themes were identified. The first, optimising research experiences, included personal reflections and broader recommendations to improve participant experiences. The second, connecting health research with healthcare, described research as key for the continued development of healthcare, but illustrated that communication between research teams, participants, and clinicians could be improved. The third theme explored the personal impacts of contributing to research, with interviewees recalling common positive experiences. The final theme discussed capturing research impacts. Interviewees highlighted potential priorities for different stakeholders, but emphasised that financial impacts should not be the sole factor.Conclusion:Individuals who were involved in NMAHPP health research recalled positive experiences and reported good relationships with their research teams. They felt that their contributions were valued. Suggested strategies to optimise the research experience focused on simplifying documentation, clear signposting of the research activities involved, and feedback on the research findings. Routine sharing of relevant research data with clinicians was also recommended. Personal impacts included a deeper understanding of their health
Rooney AG, Hewins W, Walker A, et al., 2022, Lifestyle coaching is feasible in fatigued brain tumor patients: A phase I/feasibility, multi-center, mixed-methods randomized controlled trial, NEURO-ONCOLOGY PRACTICE, ISSN: 2054-2577
Pakzad-Shahabi L, Tallant J, Le Calvez K, et al., 2022, CAPABLE - ASSESSING THE PATIENT GENERATED INDEX METHODOLOGY IN HIGH GRADE GLIOMA PATIENTS AND CAREGIVERS, Annual Meeting of the British-Neuro-Oncology-Society (BNOS), Publisher: OXFORD UNIV PRESS INC, Pages: 5-5, ISSN: 1522-8517
Strachan H, Hoskins G, Wells M, et al., 2022, A realist evaluation case study of the implementation of advanced nurse practitioner roles in primary care in Scotland, JOURNAL OF ADVANCED NURSING, Vol: 78, Pages: 2916-2932, ISSN: 0309-2402
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Saggu R, Barlow P, Butler J, et al., 2022, Considerations for mulitmodal prehabilitation in women with gynaecological cancers: a scoping review using realist principles, BMC Women's Health, Vol: 22, Pages: 1-35, ISSN: 1472-6874
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 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) Prehabilita
Wells M, 2022, Key components of successful digital remote monitoring in oncology, NATURE MEDICINE, Vol: 28, Pages: 1128-1129, ISSN: 1078-8956
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Racaru S, Saghdaoui LB, Choudhury JR, et al., 2022, Offloading treatment in people with diabetic foot disease: A systematic scoping review on adherence to foot offloading, DIABETES & METABOLIC SYNDROME-CLINICAL RESEARCH & REVIEWS, Vol: 16, ISSN: 1871-4021
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Newlands R, Duncan E, Treweek S, et al., 2022, The development of theory-informed participant-centred interventions to maximise participant retention in randomised controlled trials, Trials, Vol: 23, ISSN: 1745-6215
BACKGROUND: A failure of clinical trials to retain participants can influence the trial findings and significantly impact the potential of the trial to influence clinical practice. Retention of participants involves people, often the trial participants themselves, performing a behaviour (e.g. returning a questionnaire or attending a follow-up clinic as part of the research). Most existing interventions that aim to improve the retention of trial participants fail to describe any theoretical basis for the potential effect (on behaviour) and also whether there was any patient and/or participant input during development. The aim of this study was to address these two problems by developing theory- informed, participant-centred, interventions to improve trial retention. METHODS: This study was informed by the Theoretical Domains Framework and Behaviour Change Techniques Taxonomy to match participant reported determinants of trial retention to theoretically informed behaviour change strategies. The prototype interventions were described and developed in a co-design workshop with trial participants. Acceptability and feasibility (guided by (by the Theoretical Framework of Acceptability) of two prioritised retention interventions was explored during a focus group involving a range of trial stakeholders (e.g. trial participants, trial managers, research nurses, trialists, research ethics committee members). Following focus group discussions stakeholders completed an intervention acceptability questionnaire. RESULTS: Eight trial participants contributed to the co-design of the retention interventions. Four behaviour change interventions were designed: (1) incentives and rewards for follow-up clinic attendance, (2) goal setting for improving questionnaire return, (3) participant self-monitoring to improve questionnaire return and/or clinic attendance, and (4) motivational information to improve questionnaire return and clinic attendance. Eighteen trial stakeholders discussed t
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