Methylphenidate Versus Placebo for Treating Fatigue in Patients With Advanced Cancer: Randomized, Double-Blind, Multicenter, Placebo-Controlled Trial.

PURPOSE: To compare effects and side effects of 6 weeks of individually dose-titrated methylphenidate or placebo on fatigue in palliative care patients with advanced cancer. METHODS: This is a randomized, double-blind, placebo-controlled, multicenter trial. Eligible patients had advanced incurable cancer and fatigue >3/10. Principal exclusions were hypertension; psychiatric, cardiovascular, cerebrovascular, renal, liver, or blood disorders; substance dependency; and epilepsy. Patients were randomly assigned 1:1 methylphenidate or placebo starting at 5 mg twice daily. Dose of methylphenidate/placebo was titrated once per week, over 6 weeks, up to a maximum of 20 mg three times daily. Trial ended at 10 weeks. Primary outcome was the difference in Functional Assessment of Chronic Illness Therapy Fatigue (FACIT-F) scores between groups at 6 ± 2 weeks. Secondary outcomes included adverse effects, quality of life, and mood. RESULTS: One hundred sixty-two patients (73 men; mean, 65.8; standard deviation [SD], 10.3 years) were randomly assigned, and three were excluded from analysis. Seventy-seven were allocated placebo (baseline FACIT-F = 22 [SD, 10]); 82 were allocated methylphenidate (FACIT-F = 20 [SD, 9]). After 6 ± 2 weeks, FACIT-F scores were 1.97 points (95% CI, -0.95 to 4.90; P = .186) higher (better) on methylphenidate than placebo. Across 10 weeks of the study, FACIT-F was nominally higher in the methylphenidate group versus placebo (Diff, 2.20 [95% CI, 0.39 to 4.01]), but this did not reach the minimally clinically important difference (5-points). At 6 weeks, there were no differences between groups in quality-of-life or symptom domains except for depression scores (nominally reduced in the methylphenidate group: Diff, -1.35 [95% CI, -2.41 to -0.30]). There were no differences in mortality or serious adverse events. CONCLUSION: After 6 ± 2 weeks of treatment, methylphenidate was not superior to placebo for treating fatigue in advanced cancer. Methylphenidate was safe and well-tolerated.

Evaluation of the nurse-assisted eHealth intervention 'eHealth@Hospital-2-Home' on self-care by patients with heart failure and colorectal cancer post-hospital discharge: protocol for a randomised controlled trial.

BACKGROUND: Patients with heart failure (HF) and colorectal cancer (CRC) are prone to comorbidity, a high rate of readmission, and complex healthcare needs. Self-care for people with HF and CRC after hospitalisation can be challenging, and patients may leave the hospital unprepared to self-manage their disease at home. eHealth solutions may be a beneficial tool to engage patients in self-care. METHODS: A randomised controlled trial with an embedded evaluation of intervention engagement and cost-effectiveness will be conducted to investigate the effect of eHealth intervention after hospital discharge on the self-efficacy of self-care. Eligible patients with HF or CRC will be recruited before discharge from two Norwegian university hospitals. The intervention group will use a nurse-assisted intervention-eHealth@Hospital-2-Home-for six weeks. The intervention includes remote monitoring of vital signs; patients' self-reports of symptoms, health and well-being; secure messaging between patients and hospital-based nurse navigators; and access to specific HF and CRC health-related information. The control group will receive routine care. Data collection will take place before the intervention (baseline), at the end of the intervention (Post-1), and at six months (Post-2). The primary outcome will be self-efficacy in self-care. The secondary outcomes will include measures of burden of treatment, health-related quality of life and 30- and 90-day readmissions. Sub-study analyses are planned in the HF patient population with primary outcomes of self-care behaviour and secondary outcomes of medication adherence, and readmission at 30 days, 90 days and 6 months. Patients' and nurse navigators' engagement and experiences with the eHealth intervention and cost-effectiveness will be investigated. Data will be analysed according to intention-to-treat principles. Qualitative data will be analysed using thematic analysis. DISCUSSION: This protocol will examine the effects of the eHealth@ Hospital-2-Home intervention on self-care in two prevalent patient groups, HF and CRC. It will allow the exploration of a generic framework for an eHealth intervention after hospital discharge, which could be adapted to other patient groups, upscaled, and implemented into clinical practice. TRIAL REGISTRATION: Clinical trials.gov (ID 301472).

Barriers and facilitators to integrated cancer care between primary and secondary care: a scoping review.

PURPOSE: This scoping review identifies and characterises reported barriers and facilitators to providing integrated cancer care reported in the international literature, and develops recommendations for clinical practice. METHODS: This scoping review included literature published between 2009 and 2022 and describes the delivery of integrated cancer care between primary and secondary care sectors. Searches were conducted of an online database Ovid Medline and grey literature. RESULTS: The review included thirty-two papers. Barriers and facilitators to integrated cancer care were identified in three core areas: (1) at an individual user level around patient-healthcare professional interactions, (2) at an organisational level, and (3) at a healthcare system level. The review findings identified a need for further training for primary care professionals on cancer care, clarity in the delineation of primary care and oncologist roles (i.e. who does what), effective communication and engagement between primary and secondary care, and the provision of protocols and guidelines for follow-up care in cancer. CONCLUSIONS: Information sharing and communication between primary and secondary care must improve to meet the increasing demand for support for people living with and beyond cancer. Delivering integrated pathways between primary and secondary care will yield improvements in patient outcomes and health economic costs.

Experiences of using a supported digital intervention for cancer survivors in primary care: a qualitative process evaluation.

BACKGROUND: Increasing healthy behaviours (e.g. physical activity) can improve cancer survivors' quality of life. Renewed is a digital intervention developed to provide behaviour change advice with brief healthcare practitioner support. A three-arm randomised controlled trial (Renewed, Renewed with support or a control condition) suggested that prostate cancer survivors in the supported arm had slightly greater estimates of improvements in quality of life compared to other cancer survivors. This study explored participants' experiences using Renewed to understand how it might have worked and why it might have provided greater benefit for prostate cancer survivors and those in the supported arm. METHODS: Thirty-three semi-structured telephone interviews with cancer survivors' (breast, colorectal, prostate) from the Renewed trial explored their experiences of using Renewed and their perceptions of the intervention. Data were analysed using inductive thematic analysis. RESULTS: Some participants only used Renewed modestly but still made behaviour changes. Barriers to using Renewed included low perceived need, joining the study to advance scientific knowledge or 'to give back', or due to perceived availability of support in their existing social networks. Prostate cancer survivors reported less social support outside of Renewed compared to participants with other cancers. CONCLUSION: Renewed may support healthy behaviour changes among cancer survivors even with limited use. Interventions targetting individuals who lack social support may be beneficial. IMPLICATIONS FOR CANCER SURVIVORS: Cancer survivors' experiences may inform the development of digital interventions to better serve this population.

eHealth interventions to support colorectal cancer patients' self-management after discharge from surgery-an integrative literature review.

INTRODUCTION: Colorectal cancer (CRC) creates elevated self-management demands and unmet support needs post-discharge. Follow-up care through eHealth post-primary surgery may be an effective means of supporting patients' needs. This integrative review describes the evidence regarding eHealth interventions post-hospital discharge focusing on delivery mode, user-interface and content, patient intervention adherence, impact on patient-reported outcomes and experiences of eHealth. METHODS: A university librarian performed literature searches in 2021 using four databases. After screening 1149 records, the authors read 30 full-text papers and included and extracted data from 26 papers. Two authors analysed the extracted data using the 'framework synthesis approach'. RESULTS: The 26 papers were published between 2012 and 2022. The eHealth interventions were mainly delivered by telephone with the assistance of healthcare professionals, combined with text messages or video conferencing. The user interfaces included websites, applications and physical activity (PA) trackers. The interventions comprised the monitoring of symptoms or health behaviours, patient information, education and counselling. Evidence showed a better psychological state and improved PA. Patients reported high satisfaction with eHealth. However, patient adherence was inadequately reported. CONCLUSIONS: eHealth interventions may positively impact CRC patients' anxiety and PA regardless of the user interface. Patients prefer technology combined with a human element.

EXPERTS II - How are patient and caregiver participation in health and social care shaped by experienced burden of treatment and social inequalities? Protocol for a qualitative synthesis.

Background: The workload health and social care service users and caregivers take on, and their capacity to do this work is important. It may play a key part in shaping the implementation of innovations in health service delivery and organisation; the utilisation and satisfaction with services; and the outcomes of care. Previous research has often focused on experiences of a narrow range of long-term conditions, and on factors that shape adherence to self-care regimes. Aims: With the aim of deriving policy and practice implications for service redesign, this evidence synthesis will extend our understanding of service user and caregiver workload and capacity by comparing how they are revealed in qualitative studies of lived experience of three kinds of illness trajectories: long-term conditions associated with significant disability (Parkinson's disease, schizophrenia); serious relapsing remitting disease (Inflammatory Bowel Disease, bipolar disorder); and rapidly progressing acute disease (brain cancer, early onset dementia). Methods: We will review and synthesise qualitative studies of lived experience of participation in health and social care that are shaped by interactions between experienced treatment burdens, social inequalities and illness trajectories. The review will involve:   1.  Construction of a theory-informed coding manual; systematic search of bibliographic databases to identify, screen and quality assess full-text papers.   2.  Analysis of papers using manual coding techniques, and text mining software; construction of taxonomies of service user and caregiver work and capacity.   3.  Designing a model of core components and identifying common factors across conditions, trajectories, and contexts.   4.  Work with practitioners, and a Patient and Public Involvement (PPI) group, to explore the validity of the models produced; to develop workload reduction strategies; and to consider person-centred service design. Dissemination: We will promote workload reduction models to support service users and caregivers and produce policy briefs and peer-reviewed publications for practitioners, policy-makers, and researchers.

Our experiences of illness are often complex. We may have to work hard too. We may need to monitor and record symptoms: take up different diets and physical activity; use different drugs and medical devices; develop expertise in using websites and information technology; coordinate input from health and care services; sometimes we have to work out how to pay for the services we need. How we get through this work is affected by our capacity to do it, and that is shaped by personal and wider resources, we can draw on. All of this is also affected by the services that are available to us, and by the ways our chances in life are shaped by income, ethnicity, education, gender, and age. The kinds of illnesses we have and how they progress, mean that these factors change over time. We call these changes trajectories. To better understand service user work and capacity, we will review published studies that tell us about people's everyday experiences of living with illnesses. We focus on three rarely studied trajectories. These are long-term conditions associated with significant disability; serious relapsing remitting disease; and rapidly progressing acute disease. We will first use existing research to build a framework in which we can describe and understand relevant aspects of the published studies. We will use this framework to extract relevant information from the studies. This will enable us to make a model of common features of service user work and capacity across different conditions, their trajectories, service organisation and delivery, and patterns of social and economic disadvantage. Finally, we will work with groups of service users and caregivers, and with health and social care professionals to apply the model to the development of strategies to reduce workload and improve service design for people with complex health problems.

Parent experience of advance care planning: reconstructing meaning - grounded theory.

OBJECTIVES: Parents have unique experience of caring for their child with a life-limiting illness and significant insight into the experience of advance care planning. However, little is known about how they experience and manage this process. Our objective was to understand parents' experience of advance care planning for their child. METHODS: Data collected through semistructured interviews and documents using a constructivist and situational grounded theory approach. Parents with experience of end-of-life decisions or advance care planning for a child (age 0-17 years) with a life-limiting condition or life-threatening condition. RESULTS: 13 parents participated; 11 interviews were undertaken with analysis of 9 advance care plans. Parents were interviewed separately (n=9) or together (n=2).Overarching and inter-related categories, realisation, reconciling multiple tensions and building confidence and asserting control explained the actions and processes of parents' experience of advance care planning. The arising theory, reconstructing meaning through advance care planning, describes how the process of advance care planning, enables parents to make 'good' decisions in complex medical situations and despite the emotional distress, has therapeutic value. CONCLUSION: This study confirms parents want to engage in advance care planning, use the process to continuously reorientate their values alongside treatment decisions and that offers a therapeutic value not previously recognised. This requires healthcare professionals to reframe their approach to advance care planning conversations valuing parents' voices and desire for a sense of control and empowering them to make future decisions that offer hope and build resilience to face the future death of their child.

A multicentre randomised controlled trial of a guided self-help cognitive behavioural therapy to MANage the impact of hot flushes and night sweats in patients with prostate CANcer undergoing androgen deprivation therapy (MANCAN2).

BACKGROUND: Androgen deprivation therapy (ADT) is prescribed to almost half of all men diagnosed with prostate cancer. Although ADT is effective treatment, with virtually all men with advanced disease showing initial clinical response, it is associated with troublesome side effects including hot flushes and night sweats (HFNS). HFNS can be both frequent and severe and can have a significant impact on quality of life (QoL). They can occasionally be so debilitating that patients stop ADT altogether, despite the increased risk of disease relapse or death. Previous research has found that guided self-help cognitive behavioural therapy (CBT) can be effective in reducing HFNS due to ADT when delivered by a clinical psychologist. MANCAN2 aims test whether we can train the existing NHS Prostate Cancer Nurse Specialist (CNS) team to deliver guided self-help CBT and whether it is effective in reducing the impact of HFNS in men undergoing ADT. METHODS: MANCAN2 is a phase III multicentre randomised controlled trial and process evaluation. Between 144 and 196 men with prostate cancer who are currently receiving ADT and are experiencing problematic HFNS will be individually randomised in a 1:1 ratio in groups of 6-8 participants to either treatment as usual (TAU) or participation in the guided self-help CBT intervention plus TAU. A process evaluation using the normalisation process theory (NPT) framework will be conducted, to understand the CNS team's experiences of delivering the intervention and to establish the key influencers to its implementation as a routine practice service. Fidelity of implementation of the intervention will be conducted by expert assessment. The cost-effectiveness of the intervention and participant adherence to the trial intervention will also be assessed. DISCUSSION: MANCAN2 will advance the program of work already conducted in development of management strategies for HFNS. This research will determine whether the severity of ADT-induced HFNS in men with prostate cancer can be reduced by a guided self-help CBT intervention, delivered by the existing NHS prostate cancer CNS team, within a multicentre study. The emphasis on this existing team, if successful, should facilitate translation through to implementation in routine practice. TRIAL REGISTRATION: ISRCTN reference 58720120 . Registered 13 December 2022.

Paediatric advance care planning in life-limiting conditions: scoping review of parent experiences.

BACKGROUND: Advance care planning is considered best practice for children and young people with life-limiting conditions but there is limited evidence how parents' perceive, understand and engage with the process. AIM: To understand parents' experience of advance care planning for a child or young person with a life-limiting condition. DESIGN: Scoping review, theoretically informed by Family Sense of Coherence. Parents' experience was conceptualised in terms of meaningfulness, comprehensibility and manageability. DATA SOURCES: Electronic databases Medline, CINAHL and PyschINFO were searched for studies published between 1990 and 2021, using MeSH and broad-base terms. RESULTS: 150 citations were identified and screened; 15 studies were included: qualitative (n=10), survey (n=3) and participatory research (n=2). Parents' experience of advance care planning was contextualised by their family values and beliefs, needs and goals and the day-to-day impact of caring for their child and family. They valued conversations, which helped them to maximise their child's quality of life and minimise their suffering. They preferred flexible, rather than definitive decisions about end-of-life care and treatment. CONCLUSIONS: Advance care planning which solely focuses on treatment decisions is at odds with parents' concerns about the current and future impact of illness on their child and family. Parents want advance care planning for their child to reflect what matters to them as a family. Future longitudinal and comparative studies are needed to understand the influence of advance care planning on parental decision-making over time and how social, cultural and contextual nuances influence parental experience.

A systematic review of long-term complications of mechanical tubal occlusion.

OBJECTIVES: To collate the available evidence of the rare but identified late complications of mechanical tubal occlusion. The primary objective is to describe the nature of these longer-term acute presentations. Secondary objectives are: 1) to delineate their aetiology, 2) characterise imaging findings and 3) identify successful management options. STUDY DESIGN: Literature search using National Institute of Clinical Excellence Healthcare Databases Advanced Search and terms (complicat* OR torsion OR infect* OR migrat* OR extru*) AND (tubal occlusion OR sterili*). Results reviewed by CM and JH for eligibility. RESULTS: 33 published case reports of long-term complications of mechanical tubal occlusion. 30 demonstrated migration of the device. 16 had infective pathology. Multiple modalities of imaging used with no clear evidence that one was superior. Medical and surgical management was used with removal of device proving definitive treatment. CONCLUSIONS: Long-term complications of mechanical tubal occlusion are rare and show a varied clinical course. Clinicians should be mindful of this when evaluating patients in the acute setting, as there is no identified timeline as to when complications may occur. Imaging is almost always essential for diagnosis and the modality should be directed by the clinical presentation. Definitive management is by removal of the occlusive device, but this carries its own risks.

'A real fine balancing act': A secondary qualitative analysis of power imbalance in comorbid cancer and dementia in an outpatient treatment setting.

AIMS: Studies of health services reveal a focus on provision of scheduled care at the expense of patient need, placing the health service in a position of power and the patient as passive recipient. This secondary qualitative analysis of a focused ethnography draws on the Foucauldian concept of power as pervasive and relational, to examine how an imbalance of power is manifested in situations where people with both cancer and dementia are being treated for cancer. DESIGN: Secondary qualitative analysis of a focused ethnographic study. DATA SOURCES: In the original study, qualitative data were gathered from observation and interviews with people with cancer and dementia (n = 2), caregivers (n = 7) and staff (n = 20). The study was conducted in the outpatient departments of two teaching hospitals in England between January 2019 and July 2021. Data from all sources were analysed for this secondary analysis using constant comparison. RESULTS: The principal theme was balance, encapsulating the competing priorities involved in delivering cancer treatment. There was tension between maintaining safety and ensuring an individual's right to treatment, and difficulty reconciling the needs of the system with the needs of individuals. CONCLUSION: The pervasive nature of power can be harnessed to enhance the agency of people with cancer and dementia by incorporating principles of shared decision making. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: We recommend incorporating the principles of personalized care to achieve more equitable power relations, reduce health inequalities and ensure that cancer treatment offered to people with dementia is safe and appropriate. REPORTING METHOD: EQUATOR (COREQ) guidelines have been used for reporting. PATIENT OR PUBLIC CONTRIBUTION: Patients and the public were involved in designing the original research questions and the study protocol including documentation such as interview topic guides and participant information sheets.

Understanding the cultural environment of the outpatient care setting for patients with dementia receiving cancer treatment: A qualitative study.

INTRODUCTION: People with dementia have poorer cancer outcomes than those without dementia, and experience inequalities in access to, and quality of, care. Outpatient environments, where radiotherapy, chemotherapy and immunotherapy cancer treatments typically take place, have largely been excluded from research. This study was conducted to understand provision of treatment and support and experiences of care for people with dementia undergoing cancer treatment in the outpatient setting. MATERIALS AND METHODS: Using observation, interviews and document analysis, data were collected to scrutinize the cultural environment of ambulatory care, comprising the physical fabric of the care setting; interactions, behaviours and perceptions of those in the care setting; and the organizational, clinical and interactional processes involved in care delivery. The study was conducted in the outpatient oncology departments of two large teaching hospitals in England between January 2019 and July 2021. RESULTS: Data were gathered from a wide range of sources, including 15 h of observation, and interviews with patients (n = 2), caregivers (n = 7) and staff (n = 20). Evidence from this study suggests that the cultural environment of the outpatient care setting reflects and supports the standardized processing of people for cancer treatment. Dementia introduces a wider set of care requirements not catered for by this standardized treatment model and associated processes. Data showed that the needs of patients with dementia could be addressed most effectively when individualized care, as opposed to standardized care, was offered. CONCLUSION: There is work to be done in outpatient cancer services to ensure responsiveness to individual patient need. This could be achieved by having an established way (or ways) of eliciting needs, preferences and expectations, a belief that a person's needs and expectations are legitimate and that effort should be made to address them, with the ability to accommodate these needs and expectations. PATIENT OR PUBLIC CONTRIBUTION: Patients and caregivers were involved in the study design and development of study materials including the interview topic guide. They also assisted with discussion and clarification of study findings.

Qualitative interviews results from heart failure survey respondents on the interaction between symptoms and burden of self-care work.

AIMS AND OBJECTIVES: Following a cross-sectional survey, a sub-sample of participants was interviewed to explore the interaction between symptoms and burden of treatment. BACKGROUND: Burden of treatment considers both the work associated with illness and treatment, including self-care work, as well as the individuals' capabilities and resources to engage in that work. The recent survey revealed the existence of a complex interaction. DESIGN: Qualitative abductive analysis of semi-structured interviews. METHODS: Adults with heart failure who participated in the survey were purposely sampled and invited to participate in semi-structured interviews. Location and mode of interview varied by participant choice. Excerpts from the verbatim transcripts were assessed for interactions between symptoms and burden of treatment, and when identified these were characterised and explained. We followed COREQ checklist for reporting. The patient research ambassador group was involved from research design to dissemination. RESULTS: Participants (n = 32) consistently discussed how symptoms altered their capability to engage in self-care work. As symptom intensity increased the difficultly of their self-care work increased. A number of intervening factors appeared to influence the relationship between symptoms and burden of treatment. Intervening factors included illness pathology, illness identity, the value of the tasks attempted and available support structures. These factors may change how symptoms and burden of treatment are perceived; a model was constructed to explain and summarise these interactions. CONCLUSIONS: The interaction between symptoms and burden of treatment is complex. Intervening factors-illness identity and pathology, task value and performance, and available support structures-appear to exert a strong influence on the interaction between symptoms and burden of treatment. RELEVANCE TO CLINICAL PRACTICE: These intervening factors present clinicians and researchers with opportunities to develop interventions that might reduce burden of treatment and improve symptoms and quality of life. CLINICAL TRIAL REGISTRATION: SYMPACT was registered with ISRCTN registry: ISRCTN11011943.

A randomised controlled trial of a digital intervention (Renewed) to support symptom management, wellbeing and quality of life in cancer survivors.

BACKGROUND: Many cancer survivors following primary treatment have prolonged poor quality of life. AIM: To determine the effectiveness of a bespoke digital intervention to support cancer survivors. DESIGN: Pragmatic parallel open randomised trial. SETTING: UK general practices. METHODS: People having finished primary treatment (<= 10 years previously) for colo-rectal, breast or prostate cancers, with European-Organization-for-Research-and-Treatment-of-Cancer QLQ-C30 score <85, were randomised by online software to: 1)detailed 'generic' digital NHS support ('LiveWell';n=906), 2) a bespoke complex digital intervention ('Renewed';n=903) addressing symptom management, physical activity, diet, weight loss, distress, or 3) 'Renewed-with-support' (n=903): 'Renewed' with additional brief email and telephone support. RESULTS: Mixed linear regression provided estimates of the differences between each intervention group and generic advice: at 6 months (primary time point: n's respectively 806;749;705) all groups improved, with no significant between-group differences for EORTC QLQ-C30, but global health improved more in both intervention groups. By 12 months there were: small improvements in EORTC QLQ-C30 for Renewed-with-support (versus generic advice: 1.42, 95% CIs 0.33-2.51); both groups improved global health (12 months: renewed: 3.06, 1.39-4.74; renewed-with-support: 2.78, 1.08-4.48), dyspnoea, constipation, and enablement, and lower NHS costs (generic advice £265: in comparison respectively £141 (153-128) and £77 (90-65) lower); and for Renewed-with-support improvement in several other symptom subscales. No harms were identified. CONCLUSION: Cancer survivors quality of life improved with detailed generic online support. Robustly developed bespoke digital support provides limited additional short term benefit, but additional longer term improvement in global health enablement and symptom management, with substantially lower NHS costs.

Acceptability and usability of a patient portal for men with prostate cancer in follow-up care.

Background: A stratified approach to cancer follow-up care, including remote monitoring and supported self-management for suitable patients, is increasingly recommended. Patient portals can facilitate such an approach, allowing access to results and information. There is limited understanding of the use of portals within this context. Aim: This paper reports the acceptability and usability of a patient portal developed to facilitate a remote monitoring and supported self-management follow-up care programme for men with prostate cancer. Methods: A mixed methods evaluation, including analysis of service utilisation data, a survey of users' experiences and satisfaction, and telephone interviews of non-users' views and experiences. Results: Sixty percent of eligible patients registered to use the portal. Of these, 37% logged in at least once over a 6-month period and 52% over 12 months. Satisfaction among these users was reasonably high. Use of the portal in general was rated as very easy or easy by over 70% of respondents, and the majority felt the portal had helped them manage their condition in various ways. However, a large minority (40%) did not use the portal, with reasons for non-use including lack of access to computing facilities and lack of computer skills. Those who were older were less likely to register to use the portal. Conclusions: A large proportion of participants found the patient portal acceptable and easy to use. Reasons for non-use should be addressed in order to maximise system efficiencies and minimise inequalities in care, and the needs of specific groups should be taken into account.

Milestone house: The story of a hospice for people with HIV/AIDS.

The HIV/AIDS epidemic of the early 1980s has been extensively documented, with all its epidemiological, scientific and medical impacts. Cultural implications for many sectors of society have been profound and long-lasting. Some areas merit reflection for their ingenuity in the face of a crisis and the effect they have had on clinical practice. This report gives an account of a venture into the unknown territory of palliative care. Described here is a group of young people and their families propelled into a nightmarish condition. Those involved were outlawed and stigmatised, suffering from a disease leading to their inevitable death. By association with this group, carers and medical staff were left to interpret unhelpful guidelines and to venture into unknown therapeutic territory, sometimes beyond the margins of conventional practice.

Issues affecting supply of palliative medicines into community pharmacy: A qualitative study of community pharmacist and pharmaceutical wholesaler/distributor perspectives.

Background: Patient access to medicines in the community at end-of-life (pertaining to the last year of life) is vital for symptom control. Supply of such medicines is known to be problematic, but despite this, studies have failed to examine the issues affecting community pharmacy access to palliative medicines. Objective: To identify community pharmacists' and pharmaceutical wholesalers'/distributors' views on supply chain processes and challenges in providing access to medicines during the last year of life, to characterise supply in this UK context. Methods: Qualitative design, with telephone interviews analysed using Framework Analysis. Coding frames were developed iteratively with data analysed separately and then triangulated to examine differences in perspectives. Findings: Thirty-two interviews (24 community pharmacists and 8 wholesalers/distributors) were conducted. To ensure appropriate palliative medicines were available despite occasional shortages, community pharmacists worked tirelessly. They navigated a challenging interface with wholesalers/distributors, the Drug Tariff to ensure reimbursement, and multiple systems. IT infrastructures and logistics provided by wholesalers/distributors were often helpful to supply into community pharmacies resulting in same or next day deliveries. However, the inability of manufacturers to predict operational issues or accurately forecast demand led wholesalers/distributors to encounter shortages with manufactured stock levels, reducing timely access to medicines. Conclusions: The study identifies for the first time how palliative medicines supply into community pharmacy, can be improved. A conceptual model was developed, illustrating how influencing factors affect responsiveness and speed of medicines access for patients. Work is required to strengthen this supply chain via effective relationship-building and information-sharing, to prevent patients facing disruptions in access to palliative medicines at end-of-life.

Access to palliative care medicines in the community: An evaluation of practice and costs using case studies of service models in England.

BACKGROUND: Good patient access to medicines at home during the last 12 months of life is critical for effective symptom control, prevention of distress and avoidance of unscheduled and urgent care. OBJECTIVES: To undertake an evaluation of patient and carer access to medicines at end-of-life within the context of models of service delivery. DESIGN: Evaluative, mixed method case studies of service delivery models, including cost analysis. The unit of analysis was the service delivery model, with embedded sub-units of analysis. SETTING: (i) General Practitioner services (ii) Palliative care clinical nurse specialist prescribers (iii) a 24/7 palliative care telephone support line service. PARTICIPANTS: Healthcare professionals delivering end-of-life care; patients living at home, in the last 12 months of life, and their carers. METHODS: Within each case: Patients/carers completed a structured log on medicines access experiences over an 8-week period. Logs were used as an aide memoire to sequential, semi-structured interviews with patients/carers at study entry, and at four and eight weeks. Healthcare professionals took part in semi-structured interviews focused on their experiences of facilitating access to medicines, including barriers, and facilitating factors. Data on prescribed medicines were extracted from patient records. Detailed contextual data on each case were also collected from a range of documents. Patient, carer and healthcare professional interview data were analysed using Framework Analysis to identify main themes. We estimated prescription costs and budget impact analysis of the different service models. Data were triangulated within each case. Cross-case comparison and logic models were employed to enable systematic comparisons across service delivery types. FINDINGS: Accessing medicines is a process characterised by complexity and systems inter-dependency requiring considerable co-ordination work by patients, carers and healthcare professionals. Case studies highlighted differences in speed and ease of access to medicines across service delivery models. Key issues were diversifying the prescriber workforce, the importance of continuity of relationships and team integration, access to electronic prescribing systems, shared records and improved community pharmacy stock. Per patient prescription cost differentials between services were modest but were substantial when accounting for the eligible population over the medium term. CONCLUSIONS: Experiences of medicines access would be improved through increasing numbers of nurse and pharmacist prescribers, and improving shared inter-professional access to electronic prescribing systems and patient records, within care delivery systems that prioritise continuity of relationships. Community pharmacy stock of palliative care medicines also needs to become more reliable.

How do illness identity, patient workload and agentic capacity interact to shape patient and caregiver experience? Comparative analysis of lung cancer and chronic obstructive pulmonary disease.

Some patients have to work hard to manage their illness. When this work outweighs capacity (the resources available to patients to undertake the illness workload and other workloads such as that of daily life), this may result in treatment burden, associated with poor health outcomes for patients. This cross-sectional, comparative qualitative analysis uses an abductive approach to identify, characterise and explain treatment burden in chronic obstructive pulmonary disease (COPD) and lung cancer. It uses complementary qualitative methods (semi-structured interviews with patients receiving specialist care n = 19, specialist clinicians n = 5; non-participant observation of specialist outpatient consultations in two English hospitals [11 h, 52 min] n = 41). The findings underline the importance of the diagnostic process in relation to treatment burden; whether diagnosis is experienced as a biographically disruptive shock (as with lung cancer) or is insidiously biographically erosive (as with COPD).

SYMptoms in chronic heart failure imPACT on burden of treatment (SYMPACT): a cross-sectional survey.

AIMS: This study aimed to describe patient-reported symptoms and burden of treatment (BoT) experienced by patients with chronic heart failure (CHF). BoT describes the illness workload, individual capacity to perform that work, and resultant impact on the individual. Overwhelming BoT is related to poor quality of life and worse clinical outcomes. This research is the first to explore symptoms and BoT in people with CHF, in the UK. METHODS AND RESULTS: This is a cross-sectional questionnaire survey of CHF patients. Participants completed the Heart Failure Symptom Survey (HFSS; max score 10) and the Minnesota Living with Heart Failure Questionnaire (MLHFQ; max scores: physical 40, emotional 25, and total 105), which measured symptoms. BoT was measured with the Patient Experience with Treatment and Self-management (PETS; max score 100) questionnaires. Participant characteristics and questionnaire results were summarized using descriptive statistics. Relationships between symptoms and BoT, summarized by the workload and impact indices, were explored using Spearman's and Pearson's correlation coefficients together with scatter plots. The survey was completed by 333 participants, mean age of 71 (±13) years old. The majority (89%) were recruited from secondary care NHS trusts, and 25% were female. All types of heart failure were represented. Mean symptom scores were as follows: HFSS burden score: 2.4 (±2.1), and MLHFQ scores: physical score 20 (±12.4), emotional score 9.9 (±8.1), and total score 41.3 (±26.3). The highest mean PETS domain scores were exercise [51.3 (±24.7)], diet [40.3 (±22.7)], difficulty with healthcare services [39.9 (±21.3)], and physical and mental fatigue [36.0 (±25.7)]. Pairwise correlations were observed between HFSS scores and MLHFQ physical and emotional sub-scores with PETS workload and impact indices. Positive correlations were weak to moderate (0.326-0.487) between workload index and symptoms, and moderate to strong between impact index and symptoms (0.553-0.725). The P value was 0.006, adjusted by Bonferroni's correction. CONCLUSIONS: Symptoms are associated with BoT in CHF patients. Although symptom burden was low, CHF patients reported higher levels of burden around self-care activities of exercise, diet, healthcare interaction, as well as physical and mental fatigue due to engagement with self-care regimens. Observed higher levels of burden were in key self-care areas for CHF and suggest areas where service delivery and support of CHF patients may be improved to reduce BoT. Clinicians could individualize their consultations by focusing on troublesome symptoms, as well as alleviating illness workload, which may better enable patients to live well with CHF.