Mixed-methods process evaluation of a residence-based SARS-CoV-2 testing participation pilot on a UK university campus during the COVID-19 pandemic.

BACKGROUND: Regular testing for Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2) is an important strategy for controlling virus outbreaks on university campuses during the COVID-19 pandemic but testing participation rates can be low. The Residence-Based Testing Participation Pilot (RB-TPP) was a novel intervention implemented at two student residences on a large UK university campus over 4 weeks. The aim of the pilot was to increase the frequency of asymptomatic SARS-CoV-2 saliva testing onsite. This process evaluation aimed to determine whether RB-TPP was implemented as planned and identify implementation barriers and facilitators. METHODS: A mixed-methods process evaluation was conducted alongside the RB-TPP. Evaluation participants were students (opting in, or out of RB-TPP) and staff with a role in service provision or student support. Monitoring data were collected from the intervention delivery team and meeting records. Data were collected from students via online survey (n = 152) and seven focus groups (n = 30), and from staff via individual interviews (n = 13). Quantitative data were analysed descriptively and qualitative data thematically. Barriers and facilitators to implementation were mapped to the 'Capability, Opportunity, Motivation-Behaviour' (COM-B) behaviour change framework. RESULTS: Four hundred sixty-four students opted to participate in RB-TPP (98% of students living onsite). RB-TPP was implemented broadly as planned but relaxed social distancing was terminated early due to concerns relating to national escalation of the COVID-19 Delta variant, albeit testing continued. Most students (97.9%) perceived the period of relaxed social distancing within residences positively. The majority engaged in asymptomatic testing (88%); 46% (52% of testers) were fully compliant with pre-determined testing frequency. Implementation was facilitated by convenience and efficiency of testing, and reduction in the negative impacts of isolation through opportunities for students to socialise. Main barriers to implementation were perceived mixed-messages about the rules, ambivalent attitudes, and lack of adherence to COVID-19 protective measures in the minority. CONCLUSIONS: This process evaluation identifies factors that help or hinder the success of university residence-based outbreak prevention and management strategies. RB-TPP led to increased rates of SARS-CoV-2 testing participation among students in university residences. Perceived normalisation of university life significantly enhanced student mental wellbeing. The complexity and challenge generated by multiple lines of communication and rapid adaptions to a changing pandemic context was evident. TRIAL REGISTRATION NUMBER: UKAS 307727-02-01; Pre-results. CLINICALTRIALS: gov Identifier: NCT05045989 ; post-results (first posted, 16/09/21). ETHICAL APPROVAL: Faculty of Medicine & Health Sciences Research Ethics Committee, University of Nottingham (Ref: FMHS 96-0920).

Follow-up after curative treatment for colorectal cancer: longitudinal evaluation of patient initiated follow-up in the first 12 months.

PURPOSE: To compare patient-triggered follow-up (PTFU) for curatively treated colorectal cancer against traditional outpatient follow-up (OPFU). METHODS: Questionnaires were mailed at four time points over one-year post-treatment to two prospectively-recruited cohorts: A, patients entering follow-up and receiving OPFU pre-implementation of PTFU; B, patients entering follow-up (FU) and receiving either OPFU (B1) or PTFU (B2) post-implementation of PTFU. Bi-variate tests were used to compare patient characteristics and outcomes eight months after entering follow-up (generic and cancer-specific quality of life (QoL), satisfaction). Regression analysis explored associations between follow-up model and outcomes. Resource implications and costs of models were compared. RESULTS: Patients in Cohort B1 were significantly more likely to have received chemotherapy (p < 0.001), radiotherapy (p < 0.05), and reported poorer QoL (p = 0.001). Having a longstanding co-morbid condition was the most important determinant of QoL (p < 0.001); model of care was not significant. Patients were satisfied with their follow-up care regardless of model. Health service costs were higher in PTFU over the first year CONCLUSIONS: PTFU is acceptable to patients with colorectal cancer and can be considered to be a realistic alternative to OPFU for clinically suitable patients. The initial costs are higher due to provision of a self-management (SM) programme and remote surveillance. Further research is needed to establish long-term outcomes and costs.

Facilitating early diagnosis of lung cancer amongst primary care patients: The views of GPs.

Early diagnosis of lung cancer (LC) is a policy priority. However, symptoms are vague, associated with other morbidities, and frequently unrecognised by both patients and general practitioners (GPs). This qualitative study, part of a larger mixed methods study, explored GP views regarding the potential for early diagnosis of LC within primary care. Five focus group discussions (FGDs) were conducted with GPs (n = 16) at primary care practices (n = 5) across four counties in south England. FGDs were audio-recorded, transcribed verbatim and analysed using a framework approach. Four broad themes emerged: patients' reporting of symptoms; GP response to symptoms; investigating LC, and; potential initiatives for early diagnosis. GPs reported they often required high levels of suspicion to refer patients on to specialist respiratory consultations, and concerns of 'system overload' were prevalent. Greater access to more sensitive diagnostic investigations such as computed tomography, was argued for by some, particularly for symptomatic patients with negative chest X-rays. GPs challenged current approaches to promoting earlier diagnosis through national symptom awareness campaigns, arguing instead that interventions targeted at high-risk individuals might be more effective without burdening services already under pressure. Further work is needed to identify primary care patients who might most benefit from such targeted interventions.

Managing fatigue after cancer treatment: development of RESTORE, a web-based resource to support self-management.

OBJECTIVE: The aim of this study is to co-create an evidence-based and theoretically informed web-based intervention (RESTORE) designed to enhance self-efficacy to live with cancer-related fatigue (CRF) following primary cancer treatment. METHODS: A nine-step process informed the development of the intervention: (1) review of empirical literature; (2) review of existing patient resources; (3) establish theoretical framework; (4) establish design team with expertise in web-based interventions, CRF and people affected by cancer; (5) develop prototype intervention; (6) user testing phase 1; (7) refinement of prototype; (8) user testing phase 2; and (9) develop final intervention. RESULTS: Key stakeholders made a critical contribution at every step of intervention development, and user testing, which involved an iterative process and resulted in the final intervention. The RESTORE intervention has five sessions; sessions 1 and 2 include an introduction to CRF and goal setting. Sessions 3-5 can be tailored to user preference and are designed to cover areas of life where CRF may have an impact: home and work life, personal relationships and emotional adjustment. CONCLUSIONS: It is feasible to systematically 'co-create' an evidence-based and theory-driven web-based self-management intervention to support cancer survivors living with the consequences of cancer and its treatment. This is the first account of the development of a web-based intervention to support self-efficacy to manage CRF. An exploratory trial to test the feasibility and acceptability of RESTORE is now warranted.

The changing vaccine landscape: rates of COVID-19 vaccine acceptance and hesitancy in young adults during vaccine rollout.

AIMS: Development and rollout of vaccines offers the best opportunity for population protection against the SARS-CoV-2 (COVID-19) virus. However, hesitancy towards the vaccines might impede successful uptake in the United Kingdom, particularly in young adults who demonstrate the highest rates of hesitancy. This prospective study explored COVID-19 vaccine hesitancy in young adults and whether the reasons behind these attitudes changed during the initial stages of the United Kingdom's vaccine rollout. METHOD: Data on vaccination intention were collected from a British university student cohort at three time points: October 2020, February 2021, and March 2021. This online survey included items on intention to receive a vaccine and a free-text response for the reasons behind this intention. Cochran's Q tests examined changes in rates of hesitancy and acceptance over time and free-text responses were analysed thematically. RESULTS: At baseline, 893 students provided data, with 476 participants completing all three time points. Hesitancy declined over time, with 29.4% of participants expressing hesitancy at baseline, reducing to 9.1% at wave 2 and 5.9% at wave 3. The most commonly endorsed themes for those willing to accept a vaccine were self-protection against COVID-19 and pro-social reasons, including protecting the population or unspecific others, and ending the pandemic/returning to normal life. The most commonly endorsed hesitancy themes related to 'confidence' in the vaccines and potential personal risk, including insufficient testing/scientific evidence, concern about side effects, and long-term effects. These reasons remained the most commonly endorsed at both waves 2 and 3. CONCLUSIONS: While a decline in hesitancy was observed over time, the key reasons behind both vaccine acceptance and hesitancy remained consistent. Reasons behind hesitancy aligned with those of the general public, providing support for the use of generalist interventions. Pro-social reasons frequently underpinned vaccine acceptance, so cohort-specific interventions targeting those factors may be of benefit.

The health and well-being of cancer survivors in the UK: findings from a population-based survey.

BACKGROUND: To compare self-reported health and well-being in a sample of cancer survivors with individuals who have not had cancer and with individuals who have a serious chronic condition other than cancer. PATIENTS AND METHODS: A cross-sectional survey drawn from an online panel of 400,000 UK citizens supplemented with other online recruitment and telephone recruitment. The participants were 4892 individuals 30 years of age or above, including 780 individuals with a previous cancer diagnosis, 1372 individuals with one or more of 10 chronic conditions but not cancer and 2740 individuals without a previous cancer diagnosis or chronic condition. Thirteen measures of health and well-being were constructed from answers to 25 survey items covering physical, psychological and social dimensions of health and well-being. RESULTS: Cancer survivors were significantly more likely to report poor health outcomes across all 13 measures than those with no history of cancer or a chronic condition. The adjusted odds ratios for cancer survivors with no chronic conditions compared with healthy participants ranged from 1.37 (95% confidence interval (CI): 1.31-1.96) for emotional well-being to 3.34 (95% CI: 2.74-4.08) for number of health professionals consulted in the last 12 months. The health profile of cancer survivors was similar to those with a history of a serious chronic health condition. CONCLUSIONS: A substantial number of individuals who have had a diagnosis of cancer experience ongoing poor health and well-being following cancer and cancer treatment. The results of this study provide an initial basis for the development of specific help and support for cancer survivors.

Menopausal hot flushes after breast cancer.

The study aimed to improve understanding of the natural history and impact of hot flushes after breast cancer. Data were collected from women participating in an RCT of relaxation to reduce the incidence of flushes from breast cancer follow-up clinics from two hospitals in South-East England. Repondents were 150 women experiencing hot flushes following completion of primary treatment for breast cancer. This study utilized a flush diary, the Hot Flushes and Night Sweats Questionnaire (HFNSQ), Functional Assessment of Cancer Therapy with Endocrine Subscale (FACT-ES) and Spielberger State/Trait Anxiety Index (STAI) as the main outcome measures. The study found that in this sample, 51 (34%) women experienced flushes more than five years after diagnosis and 75 (50%) more than 5 years after menopause. Sleep disruption occurred in 90 women (72% of those that returned diaries), affecting half of the nights they recorded. The mean problem rating on the HFNSQ was 4.85 out of 10. A peak incidence of flushes was apparent around 10 a.m. in women taking tamoxifen. It was concluded that hot flushes after breast cancer may be long-lasting and cause sleeping difficulties for many women. Tamoxifen may affect the diurnal pattern of flushes. After breast cancer, the duration of flushes, potential distress and disruption to women's lives should not be underestimated and appropriate interventions should be offered.

Patterns of complementary and alternative medicine use among patients undergoing cancer treatment.

This study aimed to assess the prevalence of complementary and alternative medicine (CAM) use in a representative cancer population prior to and within 6 months of diagnosis. A total of 304 newly diagnosed cancer patients from two UK cancer centres completed a postal survey. Of them, 100 patients (32.9%) used CAM before their cancer diagnosis, 59 of these CAM users continued post diagnosis. Twenty-nine individuals who had not used CAM before began to use it after their cancer diagnosis, creating a total of 88 (28.9%) CAM users in this sample. Reasons for not using CAM included lack of interest, lack of information or endorsement from professionals and satisfaction with conventional care. For those using CAM before diagnosis but not afterwards, the most common reason was a lack of expert guidance on what was safe to use. The use of CAM medicines bought from health food and other retail outlets was high. Complementary and alternative medicine use in cancer patients is common and demonstrates a complex pattern, but CAM use is not significantly greater than in the general population. Some patients purchase CAM medicines without seeking medical advice, thus risking drug interactions. Research to generate information on safety and efficacy of CAM is required.

Supportive care needs of patients following treatment for colorectal cancer: risk factors for unmet needs and the association between unmet needs and health-related quality of life-results from the ColoREctal Wellbeing (CREW) study.

PURPOSE: To investigate unmet needs of patients with colorectal cancer (CRC) at the end of treatment and whether unmet needs improve over time. Identify predictors of need following treatment and whether unmet need is associated with worse health-related quality of life (HRQoL). METHODS: As part of the UK ColoREctal Wellbeing (CREW) cohort study, patients treated for CRC completed the Supportive Care Needs Survey Short Form-34 (SCNS SF-34) 15 and 24 months following surgery, along with questionnaires measuring HRQoL, wellbeing, life events, social support, and confidence to manage their cancer before surgery, 3, 9, 15, and 24 months post-surgery. RESULTS: The SCNS SF-34 was completed by 526 patients at 15 months and 510 patients at 24 months. About one-quarter of patients had at least one moderate or severe unmet need at both time points. Psychological and physical unmet needs were the most common and did not improve over time. Over 60% of patients who reported 5 or more moderate or severe unmet needs at 15 months experienced the same level of unmet need at 24 months. HRQoL at the beginning of treatment predicted unmet needs at the end of treatment. Unmet needs, specifically physical, psychological, and health system and information needs, were associated with poorer health and HRQoL at the end of treatment. CONCLUSIONS: Unmet needs persist over time and are associated with HRQoL. Evaluation of HRQoL at the start of treatment would help inform the identification of vulnerable patients. Assessment and care planning in response to unmet needs should be integrated into person-centred care. IMPLICATIONS FOR CANCER SURVIVORS: Early identification of CRC patients at risk of unmet needs will help infrom personalised survivorship care plans. The implementation of personalised and tailored services are likely to confer HRQoL gains.

Palliative care patients' perceptions of the work involved in understanding and managing the network of care provision surrounding them.

OBJECTIVE: To explore the work carried out for cancer palliative care patients in understanding and dealing with the often large network of care provision surrounding them. METHOD: Qualitative thematic analysis of interviews with 24 patients (aged 48-85 years) with 15 different types/sites of cancer and palliative care needs. RESULTS: The main theme of 'patient work-their strategies and project management' is presented. Subthemes included: being organised and keeping records; planning ahead and coordinating care; information gathering; understanding the hierarchy and knowing who the key people are; strategies to remember names and roles; understanding and 'working the system'. Insights are given into the work carried out on patients' behalf by family, although it was unclear who would do this work if no family was available. Some of the challenges faced by patients and families are identified. These included limited information; uncertainty when care is transferred between different teams or locations; deciding who to contact and how; and negotiating through gatekeepers. CONCLUSIONS: The number and variety of people contributing to the care of a cancer palliative care patient can be difficult for patients and family to comprehend. Work is required by patients or family on their behalf to achieve the level of understanding required to become accomplished at navigating the system and project managing their care organisation, and is probably influenced by role expectations and previous experience. Much of this additional, often hidden, workload for patients and family could probably be reduced with clear, timely information provision by health professionals.

Pediatric Traumatic Limb Amputation: The Principles of Management and Optimal Residual Limb Lengths.

Pediatric traumatic limb amputations are rare and their acute and long term management can be challenging in this subgroup of patients. The lengthy and costly hospital stays, and resulting physical and psychological implications leads to significant morbidity. We present a summary of treatment principles and the evidence base supporting the management options for this entity. The initial management focuses on resuscitating and stabilization of the patients, administration of appropriate and adequate analgesics, and broad spectrum antibiotics. The patient should ideally be managed by an orthopedic or a plastic surgeon and when an amputation is warranted, the surgical team should aim to conserve as much of the viable physis as possible aimed at allowing bone development in a growing child. A subsequent wound inspection should be performed to assess for signs of ischemia or non-viability of tissue. Depending on the child's age, approximations of the ideal residual limb length can be calculated using our guidelines, allowing an ideal stump length at skeletal maturity for a well-fitting and appropriate prosthesis. Myodesis and myoplasties can be performed according to the nature of the amputation. Removable rigid dressings are safe and cost effective offering better protection of the stump. Complications such as necrosis and exostosis, on subsequent examination, warrant further revisions. Other complications such as neuromas can be prevented by proximal division of the nerves. Successful rehabilitation can be accomplished with a multidisciplinary approach, involving physiotherapist, play therapist and a child psychiatrist, in addition to the surgeon and primary care providers.

The networks of care surrounding cancer palliative care patients.

OBJECTIVES: This paper explicates the nature and extent of the networks of care surrounding patients with cancer palliative care needs. METHOD: Twenty-four patients with 15 different types/sites of cancer were recruited in one city in England, UK. During one in-depth interview patients identified who was 'involved in their care' and any known pathways of communication between them. One hundred of these people (35 doctors, 32 nurses, 17 professions allied to medicine, 8 family members and 8 others) were also interviewed. Maps of people/teams and the connections between them for each patient were then reconstructed using social networking software (PAJEK). RESULTS: The 24 patients identified a total of 619 people or teams (mean 26, median 22, range 9-45 per patient) contributing to their care. Selected care network maps are displayed, illustrating the extent and nature of the care networks supporting palliative care patients. Common members of care networks for patients with palliative care needs are revealed, but their individual and unique nature is also apparent. CONCLUSIONS: The possible clinical utility and challenges of mapping care networks are discussed. Exploring the care networks surrounding individual patients can be useful for illuminating the extent and complexity of individual patient's care networks; clarifying who is involved and who they communicate with; providing opportunities to see interaction routes that may otherwise be hidden, revealing potentially missing or weak connections; and highlighting overlaps or gaps in provision.

Cancer survivors' self-efficacy to self-manage in the year following primary treatment.

PURPOSE: Cancer survivors are increasingly expected to manage the consequences of cancer and its treatment for themselves. There is evidence that self-efficacy is important for successful self-management and that this can be enhanced with support. The purpose of this study was to assess self-efficacy to manage problems in the year following primary treatment. METHODS: This cross-sectional online survey included cancer survivors who had completed their treatment within the past 12 months. Self-efficacy was assessed and variables expected to be associated with self-efficacy were measured using validated scales including quality of life, well-being, illness perceptions, depression and social support. RESULTS: One hundred eighty-two respondents (mean age 50; 81% female) completed the survey. They had been treated for a range of cancers; most commonly breast (45%). Self-efficacy scores varied between individuals and according to the illness-related task to be managed. Respondents were least confident in managing fatigue and most confident in accessing information about their cancer. Individuals most likely to report low self-efficacy were women, those experiencing higher levels of pain and/or depression, lower well-being scores, lower socio-economic status, low levels of social support, or a more negative perception of cancer. CONCLUSIONS: Self-efficacy to self-manage problems faced as a consequence of cancer and its treatment can vary widely in the year following treatment. Fatigue may be particularly difficult to manage. IMPLICATIONS FOR CANCER SURVIVORS: Variations in self-efficacy highlight the importance of assessing specific problems faced and people's confidence to manage them in order to tailor appropriate self-management support.

The prevalence and stability of an executive processing deficit, response inhibition, in people with chronic schizophrenia.

The current study investigates whether an executive processing measure, response inhibition, is stable over time and across new samples of patients with schizophrenia. Two groups of patients (with and without diagnoses of schizophrenia) were followed up 6 years after baseline data collection. Another separate group of patients with less institutionalized care also completed the same measures to determine whether the response inhibition difficulties had the same prevalence in this new sample.The response inhibition measure was stable over time only in the group of patients with a diagnosis of schizophrenia. The relationship between symptoms and response inhibition difficulties changed over time but was explicable in terms of the interaction between environmental demands and information processing difficulties. The level of response inhibition difficulties (about one-third) was identical in the new sample of patients, which suggests that response inhibition is not dependent on clinical history.

The effects of neurocognitive remediation on executive processing in patients with schizophrenia.

Approaches to cognitive remediation have differed across studies. Most of the larger studies have concentrated on group treatments designed without the benefit of recent laboratory-based studies. The current study describes a randomized trial of an intensive cognitive remediation program involving individual daily sessions of 1 hour for up to 3 months. It targets executive functioning deficits (cognitive flexibility, working memory, and planning) that are known to be problematic in people with schizophrenia. Procedural learning, as well as the principles of errorless learning, targeted reinforcement, and massed practice, was the basis of the intervention. The program was compared with an alternative therapy (intensive occupational therapy) to control for some of the effects of therapeutic contact. Some improvements in cognition followed both therapies. A differential effect in favor of cognitive remediation therapy was found for tests in the cognitive flexibility and the memory subgroups. There was a trend for those receiving atypical antipsychotic medication to benefit more from cognitive remediation for tests of cognitive flexibility. Although there were no consistent changes in symptoms or social functioning between groups, if improvement in cognitive flexibility tasks reached a threshold then there is some evidence that social functioning improved, even over the short duration of the trial. In addition, cognitive remediation differentially improved self-esteem. This study supports the view that cognitive remediation can reduce cognitive deficits and that this reduction may affect social outcome, at least in the short term.

Beyond survival rates and side effects: cancer nursing as therapy. The Robert Tiffany Lecture. 9th International Conference on Cancer Nursing, Brighton, UK, August 1996.

Survival rates and side effects have become the dominant constructs of cancer treatment and care, to the detriment of more supportive and patient-focused approaches. The concept of quality of life introduced to address this has failed to temper the language of oncology. Here an argument is made for the place of cancer nursing as a therapeutic enterprise in its own right, which warrants much greater recognition. Clear evidence for the therapeutic effects of cancer nursing intervention from a series of meta-analyses of cancer nursing interventions exists. Cancer nursing as therapy has the potential to operate on four levels and can effect radical change by reconstructing care, cancer services, and wider health care environments so that they are much more patient focused and offer nursing therapy as an integral part of care. These include fundamental knowledge or theory generation for therapeutic practice, therapeutic interventions for individuals or problems, developing and changing health systems or environments, or critique and reconstruction of care from a societal perspective. The features of cancer nursing as therapy can be identified and are described. Cancer nurses are encouraged to take up the challenge offered by the concept of therapeutic cancer nursing so that its potential for nurses, patients, and cancer services can be realised.

The newly registered nurse and the cancer patient: an educational evaluation.

This paper reports a study which aimed to develop an understanding of newly registered nurses' attitudes, knowledge, confidence and educational needs in relation to cancer care. An educational intervention designed to meet these nurses' needs was then developed and evaluated with 127 newly registered nurses from two general hospitals. Nurses attended two different educational interventions; one group of nurses completing a 3 day experiential workshop; and a second group attended a more formal seminar programme. A third group of nurses who were unable to obtain study leave were followed up as a control group. A triangulation strategy was used to collect data from different sources, and included a baseline study, and a study of nurses before, after and 3 months following the educational interventions. Data from the study revealed the perceived need and desire for more education on cancer care, and the strong association of cancer with death amongst newly registered nurses. Significant benefits to those nurses attending the workshop were demonstrated. These differences were however less obvious at 3 months follow-up.

Multicentre randomised controlled trial of nursing intervention for breathlessness in patients with lung cancer.

OBJECTIVE: To evaluate the effectiveness of nursing intervention for breathlessness in patients with lung cancer. DESIGN: Patients diagnosed with lung cancer participated in a multicentre randomised controlled trial where they either attended a nursing clinic offering intervention for their breathlessness or received best supportive care. The intervention consisted of a range of strategies combining breathing control, activity pacing, relaxation techniques, and psychosocial support. Best supportive care involved receiving standard management and treatment available for breathlessness, and breathing assessments. Participants completed a range of self assessment questionnaires at baseline, 4 weeks, and 8 weeks. SETTING: Nursing clinics within 6 hospital settings in the United Kingdom. PARTICIPANTS: 119 patients diagnosed with small cell or non-small cell lung cancer or with mesothelioma who had completed first line treatment for their disease and reported breathlessness. OUTCOME MEASURES: Visual analogue scales measuring distress due to breathlessness, breathlessness at best and worst, WHO performance status scale, hospital anxiety and depression scale, and Rotterdam symptom checklist. RESULTS: The intervention group improved significantly at 8 weeks in 5 of the 11 items assessed: breathlessness at best, WHO performance status, levels of depression, and two Rotterdam symptom checklist measures (physical symptom distress and breathlessness) and showed slight improvement in 3 of the remaining 6 items. CONCLUSION: Most patients who completed the study had a poor prognosis, and breathlessness was typically a symptom of their deteriorating condition. Patients who attended nursing clinics and received the breathlessness intervention experienced improvements in breathlessness, performance status, and physical and emotional states relative to control patients.