Can proactive support prevent unscheduled care? A controlled observational retrospective cohort study in cancer patients in Scotland.

INTRODUCTION: Preventative spend is a global health and social care strategy. Improving Cancer Journeys (ICJ) is a proactive, holistic, multidisciplinary project consistent with this agenda, currently being rolled out across Scotland and parts of UK. ICJ helps people with cancer access whatever support they need to mitigate their most pressing concerns. This study hypothesised that ICJ service users should subsequently use less unscheduled care than matched cohorts not using ICJ. METHODS: Retrospective observational cohort study using linked national datasets. N = 1,214 ICJ users in Glasgow were matched for age, sex, deprivation, cancer type, stage, and diagnosis year to two control groups: 1. Cancer patients from Glasgow before ICJ (pre-2014), 2. Cancer patients from rest of Scotland during study period (2014-2018). Cancer registrations were linked for 12-month baseline and study periods to: NHS24 calls, A&E admissions, inpatient hospital admissions, unscheduled care, number & cost of psychotropic prescriptions. Per-person mean service uses were compared between groups. RESULTS: There was a significant increase in NHS24 calls in the ICJ group (0.36 per person vs. -0.03 or 0.35), more and longer A&E attendances in ICJ (0.37 per person vs. 0.19 or 0.26; 2.19 h per person vs. 0.81-0.92 h), more and longer hospital admissions in ICJ (4.25 vs. 2.59 or 2.53; 12.05 days vs. 8.37 or 8.64), more care pathways involving more steps in ICJ (0.77 spells vs. 0.39 or 0.57; 1.88 steps vs. 1.56 or 1.21), more psychotropic drug prescriptions and higher costs in ICJ (1.88 prescription vs. 1.56 or 1.21; £9.51 vs. £9.57 or £6.95) in comparison to both control groups. DISCUSSION: ICJ users sourced significantly more unscheduled care than matched cohorts. These findings were consistent with much of the comparable literature examining the impact of non-health interventions on subsequent health spend. They also add to the growing evidence showing that ICJ reached its intended target, those with the greatest need. Together these findings raise the possibility that those choosing to use ICJ may also be self-identifying as a cohort of people more likely to use unscheduled care in future. This needs to be tested prospectively, because this understanding would be very helpful for health and social care planners in all countries where proactive holistic services exist.

Holistic needs assessment in outpatient cancer care: a randomised controlled trial.

DESIGN: Analyst blinded, parallel, multi-centre, randomised controlled trial (RCT). PARTICIPANTS: People with confirmed diagnoses of cancer (head and neck, skin or colorectal) attending follow-up consultation 3 months post-treatment between 2015 and 2020. INTERVENTION: Holistic needs assessment (HNA) or care as usual during consultation. OBJECTIVE: To establish whether incorporating HNA into consultations would increase patient participation, shared decision making and postconsultation self-efficacy. OUTCOME MEASURES: Patient participation in the consultations examined was measured using (a) dialogue ratio (DR) and (b) the proportion of consultation initiated by patient. Shared decision making was measured with CollaboRATE and self-efficacy with Lorig Scale. Consultations were audio recorded and timed. RANDOMISATION: Block randomisation. BLINDING: Audio recording analyst was blinded to study group. RESULTS: 147 patients were randomised: 74 control versus 73 intervention. OUTCOME: No statistically significant differences were found between groups for DR, patient initiative, self-efficacy or shared decision making. Consultations were on average 1 min 46 s longer in the HNA group (respectively, 17 m 25 s vs 15 min 39 s). CONCLUSION: HNA did not change the amount of conversation initiated by the patient or the level of dialogue within the consultation. HNA did not change patient sense of collaboration or feelings of self-efficacy afterwards. HNA group raised more concerns and proportionally more emotional concerns, although their consultations took longer than treatment as usual. IMPLICATIONS FOR PRACTICE: This is the first RCT to test HNA in medically led outpatient settings. Results showed no difference in the way the consultations were structured or received. There is wider evidence to support the roll out of HNA as part of a proactive, multidisciplinary process, but this study did not support medical colleagues facilitating it. TRIAL REGISTRATION NUMBER: NCT02274701.

Men's perspectives of caring for a female partner with cancer: A longitudinal narrative study.

Increasing evidence on men's involvement in informal, unpaid care has not transferred to the research literature around men's experiences. The aim was to explore the perspectives of men who are caring for a female partner with cancer over 1 year. Longitudinal narrative interviews (n = 22) were conducted with eight men in the UK from 2018 to 2019. Participants were aged from 32 to 76 years old, were all white British and in heterosexual relationships with women diagnosed with a range of cancer types. Interviews were transcribed and then analysed using a structural and performance approach to narrative analysis. We present, across four scenes, a process of change, transition and emotion management as the men were launched into a role that came with new responsibilities and expectations. Our study advances knowledge by highlighting the way that men perform and reflect on their negotiation with masculine discourses while supporting their partner, with implications for policy, research and practice.

'Pinholes in my arms': the vicious cycle of vascular access.

BACKGROUND: Vascular access devices (VADs) are essential for delivery of intravenous therapies. There are notable gaps in the literature regarding a focus on patient experience and meaning-making related to living with a VAD, specifically a central venous access device (CVAD). AIMS: To explore how patients make sense of living with a CVAD. METHODS: This study followed an interpretive phenomenological analysis (IPA) approach. Purposive sampling was used to identify 11 cancer patients who had a CVAD in situ. One-to-one semi-structured interviews were performed. Interviews were digitally recorded, transcribed and analysed by the lead author. FINDINGS: Four superordinate themes were identified: the self under attack; being rescued/being robbed; protection of others/protection of self; bewilderment and dismay at lack of staff competence. CONCLUSION: Having a CVAD affects the psychological, social, and personal self and impacts on self-esteem and self-image. Despite this, CVADs are accepted by patients and are eventually 'embodied' by them.

Meeting psychosocial needs to improve health: a prospective cohort study.

BACKGROUND: Cancer impacts on patients and their families across a range of different domains. For that reason, optimal cancer care has moved away from a disease-centric focus to a more holistic approach in order to proactively support people with their individual needs and concerns. While international policy clearly advocates this agenda, implementation into routine care is limited. Therefore, relevant interventions that measurably improve patient outcomes are essential to understand if this ideal is to become routine multidisciplinary practice. The aim of this study was to analyse the impact of a proactive, holistic, community-based intervention on health-related quality of life in a cohort of people diagnosed with cancer. Secondary aim was to explore the relationship between changes in health status and: cancer type, cancer stage, number of concerns expressed and change in severity of concerns pre and post intervention. METHOD: Prospective observational cohort study. A convenience sample of 437 individuals were referred to the service 'Improving the Cancer Journey (ICJ) in the UK. Each completed the Euroqol EQ-5D-3 L and visual analogue scale (VAS) and a Holistic Needs Assessment (HNA) during initial visit to the service and again at follow-up review, median 84 days later. Change between scores was tested with paired t-tests and relationships between variables with multiple regression models with heteroscedasticity-consistent standard errors. RESULTS: Participants were White British with median age between 50 and 64 years. Cancer type and stage were varied. EQ-5D utility scores improved at follow-up by 0.121 [0.0891-0.153], p < .001, and VAS scores improved by 7.81 [5.88-9.74], p < .001. The strongest predictor of change was a decrease in severity of concerns. Cancer stage 'palliative care' contributed to a reduction in health status. CONCLUSION: This study is the first to show that a holistic community intervention dedicated to supporting the individual concerns of participants had both a statistically significant and clinically meaningful impact on participants' health-related quality of life. The mean change in EQ-5D scores was more than the 'minimally important clinical difference' described in the literature. This is important because while quality of life has multiple determinants, this study has shown for the first time that it is possible to capture a clinically meaningful improvement as a function of reducing someone's personally identified concerns.

A J curve of interprofessional change: co-locating non-health partners in an oncology unit.

BACKGROUND: Internationally, clinicians face increased demand, pressure on resources and unmet patient needs. A community social support service was co-located within cancer clinics in Glasgow, Scotland to help address some of these needs. AIM: To analyse the impact of the service on clinical staff and to propose an explanatory theory of change. METHOD: Qualitative exploratory design, using thematic analysis of semistructured interviews with 8 nurse specialists and 2 medical oncologists from lung, breast, head and neck, and gastrointestinal oncology teams in Glasgow in 2018-2019. FINDINGS: Four themes captured this process: 'The conversation', 'A better experience', 'Freedom to focus' and 'Working hand in hand'. CONCLUSION: Together, these four themes explained the process of effective interprofessional working. This process would have been predicted by the J-curve literature on diffusion of innovations. Linking J-curve theory to this successful process provides new understanding that could prove essential for clinical teams who are implementing change within their practice.

A qualitative study on the perceived impact of using an integrated community-based supportive cancer service.

OBJECTIVE: "Improving the Cancer Journey" (ICJ) is an original, community-based, multidisciplinary service offering holistic support to people diagnosed with cancer in Scotland. It is the first service of its kind in the UK. The aim of this qualitative study was to explore the experiences of people who have used this service. METHOD: Twenty service users were purposively sampled to capture a diverse range of age, sex, cancer types, and deprivation status. Semi-structured interviews explored their experiences of using ICJ. Interviews were transcribed verbatim and thematically analysed. RESULTS: Thirteen women and seven men (mean age 58 years) were interviewed. Three themes were identified: "one person, one place," "routes to unexpected support" and "safety net." CONCLUSION: Improving the Cancer Journey was perceived to be beneficial because it met the holistic needs of the ICJ service users. By helping people address concerns earlier rather than later, it prevented problems becoming unmanageable. Having an accessible expert to guide and support them through a range of services provided reassurance and created the space to self-manage at a time of distress. These original findings are internationally relevant because there is little evidence on the impact of holistic support services from the patient perspective.

Proactive community support tailored to holistic needs: A cohort study.

BACKGROUND: It is increasingly internationally recognized that a cancer diagnosis impacts on people practically and financially as well as physically and psychologically. It is less clear what to do about this. This study introduces an original community service designed to mitigate this wider impact. Nonclinical "link officers" use holistic needs assessment (HNA) to help newly diagnosed people identify and quantify the severity of their physical, psychological, practical, financial, and social concerns. A care plan is then agreed, usually involving community interventions from partner agencies. Following intervention, assessment is repeated. The primary aim of this study was to establish whether there was a significant difference between initial assessment and follow-up, postintervention. Secondary aim was to identify potential predictors of increased levels of concern at baseline and follow-up. METHOD: Pre- and postintervention observational cohort study. Paired t test examined the difference in mean (SD) concern severity between baseline and follow-up. Multiple linear regression models were computed to hypothesize potential predictors of initial concern severity and severity change. RESULTS: The service saw 2413 people 2014-2017. Participants identified average 5.5 (4.7) concerns, financial concerns being most frequent. Mean severity at baseline was 7.12 (out of 10) (2.50), reducing to 3.83 (3.49) post-treatment, paired t(4454) = 64.68, P < 0.0001, reduction of 3.31 (95% CI 3.21-3.41). Factors associated with higher initial concern included unemployment and caring responsibilities. Unemployment was also associated with a smaller reduction of concern severity at follow-up. CONCLUSION: Patient level of concern went from a level associated with specialist referral to a much more manageable level. This original finding is internationally significant because it extends Khera et al's (2017) "provocative idea" that all patients should be screened for financial problems to show that they can be helped with all their concerns. This article describes a successful, transferable model of community care.

A retrospective medical records review of risk factors for the development of respiratory tract secretions (death rattle) in the dying patient.

AIM: Identification of risk factors predicting the development of death rattle. BACKGROUND: Respiratory tract secretions, often called death rattle, are among the most common symptoms in dying patients around the world. It is unknown whether death rattle causes distress in patients, but it has been globally reported that distress levels can be high in family members. Although there is a poor evidence base, treatment with antimuscarinic medication is standard practice worldwide and prompt intervention is recognized as crucial for effectiveness. The identification of risk factors for the development of death rattle would allow for targeted interventions. DESIGN: A case-control study was designed to retrospectively review two hundred consecutive medical records of mainly cancer patients who died in a hospice inpatient setting between 2009-2011. Fifteen potential risk factors including the original factors weight, smoking, final opioid dose and final midazolam dose were investigated. METHODS: Binary logistic regression to identify risk factors for death rattle development. RESULTS: Univariate analysis showed death rattle was significantly associated with final Midazolam doses and final opioid doses, length of dying phase and anticholinergic drug load in the pre-terminal phase. In the final logistic regression model only Midazolam was statistically significant and only at final doses of 20 mg/24 hrs or over (OR 3.81 CI 1.41-10.34). CONCLUSIONS: Dying patients with a requirement for a high dose of Midazolam have an increased likelihood of developing death rattle.

Systematic review and narrative summary: Treatments for and risk factors associated with respiratory tract secretions (death rattle) in the dying adult.

AIM: To identify effective treatments and risk factors associated with death rattle in adults at the end of life. BACKGROUND: The presence of noisy, pooled respiratory tract secretions is among the most common symptoms in dying patients around the world. It is unknown if "death rattle" distresses patients, but it can distress relatives and clinicians. Treatments appear unsatisfactory, so prophylaxis would be ideal if possible. DESIGN: Quantitative systematic review and narrative summary following Cochrane Collaboration guidelines. DATA SOURCES: CINAHL, MEDLINE, Health Source Nursing and Web of Science were searched for international literature in any language published from 1993 - 2016 using MeSH headings and iterative interchangeable terms for "death rattle". REVIEW METHODS: Randomized controlled trials were appraised using the Cochrane Collaboration's tool for assessing risk of bias. Non-randomized studies were assessed using ROBINS-I tool for assessing risk of bias in non-randomized studies of interventions. Instances of treatment and risk were extracted and relevant key findings extracted in line with Cochrane methods. RESULTS: Five randomized trials and 23 non-randomized studies were analysed. No pharmacological or non-pharmacological treatment was found superior to placebo. There was a weak association between lung or brain metastases and presence of death rattle, but otherwise inconsistent empirical support for a range of potential risk factors. CONCLUSIONS: Clinicians have no clear evidence to follow in either treating death rattle or preventing it occurring. However, several risk factors look promising candidates for prospective analysis, so this review concludes with clear recommendations for further research.

Protocol for a mixed methods longitudinal enquiry into the impact of a community based supportive service for people affected by cancer.

BACKGROUND: Globally, cancer rates are increasing. In Scotland, it is estimated that 2 in 5 people will develop cancer in their lifetime. Therefore, this is crucial time to provide personalised care and support to individuals affected by cancer. In response to this a community based supportive cancer service was launched in Glasgow, Scotland. The aim of this service is to proactively provide those affected by cancer with an assessment of their needs and personalised support where needed. To our knowledge, there is no other service like this in the United Kingdom. METHODS: The aim of this study is to understand if and how the service impacts upon the experiences and outcomes of people living with and affected by cancer. The study uses a sequential mixed methods design across a 5 year time point. Data gathering includes questionnaires, interviews, observations and reflective diaries. Participants include people affected by cancer who have used the service, a comparative sample who have not used the service, individuals who deliver the service and wider stakeholders. Outcomes include measures of patient activation, quality of life, health status, and social support. Data collection occurs at baseline, 2.5 years and 4 years with data from observations and reflective diaries supplemented throughout. DISCUSSION: This study evaluates an innovative community based cancer service. It focuses on impact and process issues relevant to a) the individuals in receipt of the service, b) the service providers, and c) the wider culture. As the programme evolves overtime, the research has been designed to draw out learning from the programme in order to support future commissioning both within Scotland and across the UK.

Validation of the electronic Holistic Needs Assessment.

Macmillan Cancer Support UK have developed an electronic Holistic Needs Assessment (eHNA) to: (1) help people living with cancer express all their needs, (2) help those helping them better target support. eHNA consists of 48 items each ranked from zero (no problem) to 10. There has been no psychometric analysis of this tool and so its validity and reliability are untested. The aim of this study was to evaluate the psychometric properties of the eHNA by examining its construct validity. Objectives were to (a) test whether the eHNA measured holistic concerns and (b) analyse the factor structure of the eHNA. Objectives were achieved through a secondary analysis of 5421 responses to eHNA using concurrent application of Rasch analysis and principal component analysis. All the items bar one fit with the Rasch rating model and were equivalently important to people. Differential item functioning was evident according to whether people were described as curative or not. A 12-factor solution explained 46 % variance. Of this the emotional/spiritual factor explained the most variance accounting for 15 %. The eHNA was internally consistent and conceptually coherent with the construct of holistic needs assessment. Clinical focus is best directed to the individual items highlighted by the patient except where patients check too many problems for the clinician to accurately prioritise. In these cases only, the emotional/spiritual factor may help identify appropriate clinical action. Strengths and weaknesses of the analyses are discussed, particularly in relation to 'at risk' subsamples such as those classified as non-curative.

Evaluating holistic needs assessment in outpatient cancer care--a randomised controlled trial: the study protocol.

INTRODUCTION: People living with and beyond cancer are vulnerable to a number of physical, functional and psychological issues. Undertaking a holistic needs assessment (HNA) is one way to support a structured discussion of patients' needs within a clinical consultation. However, there is little evidence on how HNA impacts on the dynamics of the clinical consultation. This study aims to establish (1) how HNA affects the type of conversation that goes on during a clinical consultation and (2) how these putative changes impact on shared decision-making and self-efficacy. METHODS AND ANALYSIS: The study is hosted by 10 outpatient oncology clinics in the West of Scotland and South West England. Participants are patients with a diagnosis of head and neck, breast, urological, gynaecological and colorectal cancer who have received treatment for their cancer. Patients are randomised to an intervention or control group. The control group entails standard care--routine consultation between the patient and clinician. In the intervention group, the patient completes a holistic needs assessment prior to consultation. The completed assessment is then given to the clinician where it informs a discussion based on the patient's needs and concerns as identified by them. The primary outcome measure is patient participation, as determined by dialogue ratio (DR) and preponderance of initiative (PI) within the consultation. The secondary outcome measures are shared decision-making and self-efficacy. It is hypothesised that HNA will be associated with greater patient participation within the consultation, and that shared decision-making and feelings of self-efficacy will increase as a function of the intervention. ETHICS AND DISSEMINATION: This study has been given a favourable opinion by the West of Scotland Research Ethics Committee and NHS Research & Development. Study findings will be disseminated through peer-reviewed publications and conference attendance. TRAIL REGISTRATION NUMBER: Clinical Trials.gov NCT02274701.

Improving the care of cancer patients: holistic needs assessment.

This discussion paper presents a review of holistic needs assessments (HNAs) in the care of patients with cancer. HNAs entail a structured review of patient needs as articulated by the patient. This discussion then leads to a care plan grounded in issues pertinent to that patient. Despite policy guidance advocating its use, there are barriers to overcome in order to integrate HNAs into routine care. This article discusses what role communication skills and clinician confidence may have on the use of HNAs in practice, and suggests a strategy to support HNAs becoming the norm.

Helping the clinician help me: towards listening in cancer care.

Despite global support for the ideal of shared decision making, its enactment remains difficult in practice. The UK charity, Macmillan Cancer Support, attempted to incorporate the principles of shared decision making within a programme of distress management in Scotland. Distress management begins by completing the Distress Thermometer (DT). Although the DT is a screening tool, its function in this programme was extended to facilitate collaborative communication within a consultation. The aim of this grounded theory was to analyse the patient experience of the process. Nineteen people underwent semi-structured interviews focused on their experience of distress management. Participants were a mixed-cancer cohort aged 40-79 years. Findings were discussed in a structured manner with a further 14 service users and carers, and 19 clinical specialists in cancer. Constant comparison of all data revealed that the process of positive distress management could best be explained by reference to the core category: 'helping the clinician help me'. The emergence of this core category is detailed by situating its development within the iterative nature of the grounded theory method.

An exploration of palliative care provision in Scottish care homes.

This paper suggests that there is an imbalance between the ideal and the actual palliative care provision for some older people living and dying in care homes in Scotland. Successive studies demonstrate that care home residents are increasingly frail and disabled. Many experience challenging physical and psychosocial symptoms which could benefit from a palliative approach to alleviate suffering and promote comfort. However, palliative needs for people with non-malignant conditions, such as dementia, can be complex, and not easily identified or managed. A range of challenging factors currently impact palliative care provision for care home residents in Scotland including: the insufficiency of robust NHS healthcare support, the skill mix of the care home workforce, and the promotion of palliative tools as the primary means of improving the quality of palliative care in non-specialist settings. Issues highlighted in this paper give cause for concern on a number of levels, particularly as the demand for palliative care in care homes is likely to increase in the near future. Therefore, sustained collaborative effort from leaders in the health, social and care home sectors is recommended if practical solutions are to be found for this vulnerable population.

The clinical utility of the distress thermometer: a review.

The Distress Thermometer (DT) is a well validated screening tool, demonstrably sensitive and reasonably specific to the construct of distress in cancer. Its brevity makes it ideal to incorporate into a system of distress management. To ascertain how far this idea has been developed in practice, and to support future research, a literature review was undertaken. Medline, CINAHL, PsycINFO, Embase, ASSIA, British Nursing Index, AMED, CCTR, and HMIC were systematically searched. Forty studies were reviewed that examined the function of the DT alone, together with the problem list (PL), and/or other validated measures. The majority of studies validated the DT against other robust measures of distress in order to establish 'caseness' in these populations, and establish factors associated with distress. Many of the studies recommended that further research should test their findings in clinical practice. A small section of the literature focused on the clinical utility of the DT as a facilitator of consultations, and found it to have potential in this regard. It is concluded that there is enough validation research, and in line with the majority of these studies' recommendations, future research should focus on the utility of DT as part of a structured distress management programme.

Integrating medicines management into mental health nursing in UK.

There is increasing concern that mental health nurses in UK are inadequately trained in medicines management. Recommended solutions entail proposals for further training to improve safety for service users. Although fundamentally important, these organizational approaches lack a conceptual framework to explain how individual practitioners develop competence in medicines management. This is important because applying knowledge of how individuals learn makes strategic interventions more effective. This article presents empirical evidence of how individual mental health nurse prescribers develop competence in prescribing within the context of the therapeutic relationship. It is proposed that these findings can then be extended to inform medicines management training relevant to all mental health nurses, whether prescribers or not.

Medication management in older adults: a critique of concordance.

This article shows that the terms compliance, adherence and concordance are used interchangeably in the medication management literature. As such, it is argued that nurses should focus on those interventions that are demonstrably effective in enhancing medication management for the older adult rather than attempt to make sense of a meaningless ideal. In this article the concepts of concordance, compliance and adherence are first critiqued and it is then argued that all the terms remain valid for practical purposes. That is, a literature search of all the terms is required to comprehensively discuss medication management. Focus then switches to factors that have been shown to be beneficial as well as detrimental to medication management in older adults. While many factors appear to correlate with good and bad management of medication the conclusion is that individual, tailored approaches are most effective. For the purpose of this article, the term 'older adult' refers to those over 65 years where not otherwise specified.