Veronica Nanton

Finding a pathway: Information and uncertainty along the prostate cancer patient journey

OBJECTIVES To investigate the role of information in mediating the potential negative effects of uncertainty in prostate cancer in relation to the individual patient journey, conceptualized as the individuals response to his disease over time. DESIGN A qualitative methodology was adopted to investigate mens constructions of their experience of information and its changing role in the management of uncertainty along the pathway of care. A cross-sectional design allowed comparison of the responses of men at similar stages and along different time points in the cancer pathway. Data collection was undertaken via focus group discussions and individual interviews. METHOD Men from 4 weeks post-diagnosis to palliative care were recruited from hospital out-patient clinic registers and a local support group. Seven focus groups and 22 semi-structured interviews were held involving a total of 22 participants. Transcripts were analysed through a process of theme comparison. RESULTS Findings suggest that uncertainty is both multifaceted and changing. Its impact is affected by a range of personal, disease related, and social factors. For some men it may bring about positive readjustment rather than a negative response. Effective communication of information by health professionals provides reassurance, knowledge, and understanding the balance of which varies over time and between individuals. CONCLUSION Health professionals may contribute to the reduction of the negative effects of uncertainty through communication of information regarding process of care as well as medical issues. Strategies tailored to individual differences in information requirements and to changing needs may facilitate positive adjustment.

Coordination of care for individuals with advanced progressive conditions: a multi-site ethnographic and serial interview study

BACKGROUND Coordination of care for individuals with advanced progressive conditions is frequently poor. AIM To identify how care is coordinated in generalist settings for individuals with advanced progressive conditions in the last year of life. DESIGN AND SETTING A mixed methods study of three UK generalist clinical settings producing three parallel case studies: an acute admissions unit in a regional hospital, a large general practice, and a respiratory outpatient service. METHOD Ethnographic observations in each setting, followed by serial interviews of patients with advanced progressive conditions and their family carers in the community. A spectrum of clinicians and healthcare workers were also interviewed. RESULTS Ethnographic observations were conducted for 22 weeks. A total of 56 patients, 25 family carers and 17 clinicians yielded 198 interviews. Very few participants had been identified for a palliative approach. Rapid throughput of hospital patients and time pressures in primary care hindered identification of palliative care needs. Lack of care coordination was evident during emergency admissions and discharges. Patient, families, and professionals identified multiple problems relating to lack of information, communication, and collaboration at care transitions. Family carers or specialist nurses, where present, usually acted as the main care coordinators. CONCLUSION Care is poorly coordinated in generalist settings for patients in the last year of life, although those with cancer have better coordinated care than other patients. A model to improve coordination of care for all individuals approaching the end of life must ensure that patients are identified in a timely way, so that they can be assessed and their care planned accordingly.

A qualitative study evaluating experiences of a lifestyle intervention in men with prostate cancer undergoing androgen suppression therapy

BackgroundThe severe iatrogenic hypogonadal state induced by medical castration used for treatment of prostate cancer is associated with adverse effects including fatigue, increased fracture risk, and a decrease in skeletal muscle function, which negatively impact quality of life. We have previously reported beneficial changes in healthy lifestyle behaviors, physical function and fatigue as a result of a novel combined exercise and dietary advice intervention (a lifestyle intervention) in men with prostate cancer on androgen suppression therapy (AST). The aim of this research was to conduct a qualitative evaluation of the lifestyle intervention in these men with advanced prostate cancer receiving androgen suppression therapy (AST).MethodsTwelve men with prostate cancer on AST took part in three focus groups in a UK higher education institution following the 12 week intervention. Sessions lasted between 45 and 60 minutes in duration. All discussions were audio-taped and transcribed. A framework analysis approach was applied to the focus group data. An initial coding framework was developed from a priori issues listed in the topic guide and extended and refined following initial familiarization with the focus group transcripts. Line by line indexing of the transcripts was undertaken iteratively to allow for the incorporation of new codes. Coded sections of text were grouped together (charted) into themes and subthemes prior to a further process of comparison and interpretation.ResultsNone of the participants involved in the trial were provided with information on how lifestyle changes might be beneficial to men with prostate cancer during the course of their standard medical treatment. We present novel findings that this intervention was considered beneficial for reducing anxiety around treatment and fear of disease progression. Men were supportive of the benefits of the intervention over conventional cancer survival discussion group arrangements as it facilitated peer support in addition to physical rehabilitation.ConclusionsThe benefits of lifestyle changes in men with prostate cancer are not well appreciated by care providers despite a range of benefits becoming apparent. Strategies to implement exercise and dietary interventions in standard care should be further evaluated.Trial registrationCurrent Controlled Trials ISRCTN88605738

‘My body's falling apart.’ Understanding the experiences of patients with advanced multimorbidity to improve care: serial interviews with patients and carers

Objective Multimorbidity is increasingly common in the last year of life, and associated with frequent hospital admissions. The epidemiology is well described, but patient perspectives are less understood. We report the experiences and perceptions of people with advanced multimorbidity to inform improvements in palliative and end-of-life care. Design Multicentre study including serial, multiperspective interviews with patients and their family carers; an interpretive analysis of experiences and understanding of living with advanced multimorbidity. Participants We recruited patients and their family carers using established UK clinical guidance for the identification of people anticipated to be in their last year of life. Settings An acute admissions unit in a Scottish regional hospital; a large English general practice; a London respiratory outpatient clinic. Results We analysed 87 interviews with 37 patients and 17 carers. They struggled with multiple changing medications, multiple services better aligned with single conditions such as cancer, and a lack of coordination and continuity of care. Family carers spoke of physical, mental and emotional exhaustion and feeling undervalued by professionals. Patients and carers frequently saw deteriorating health as part of ‘growing old’. Many used a ‘day-to-day’ approach to self-management that hindered engagement with advance care planning and open discussions about future care. ‘Palliative care’ and ‘dying soon’ were closely related concepts for many patients, carers and professionals, so rarely discussed. Conclusions Patients with advanced multimorbidity received less care than their illness burden would appear to merit. Some people did restrict their interactions with care providers to preserve autonomy, but many had a limited understanding of their multiple conditions, medications and available services, and found accessing support impersonal and challenging. Greater awareness of the needs associated with advanced multimorbidity and the coping strategies adopted by these patients and carers is necessary, together with more straightforward access to appropriate care.

'It don't make sense to worry too much': the experience of prostate cancer in African-Caribbean men in the UK

The incidence of prostate cancer among African-Caribbean men in the UK is three times that among men from the majority population. Little attention, however, has been given to the perceptions and experiences of treatment and care of men from these communities with prostate cancer. This qualitative study is the first such investigation, situating mens accounts within the context of their personal history and social environment. Using a community-based, snowball sampling method, 16 first generation African-Caribbean men living in Central England were recruited. Similarities and divergence in mens experience were identified through thematic analysis of interview transcripts. Mens responses to their situation were influenced by aspects of migration and historical context as well as culture. While medical treatment was highly valued, common difficulties were compounded by problems of health professional-patient communication, stereotyping and insensitivity of some staff. Lack of coordination between services and agencies adversely affected the well-being of frail men and widowers. Findings suggest the need for a more proactive approach to giving and eliciting information combined with cultural diversity training. More systematic referral procedures and information exchange between African-Caribbean men with prostate cancer and their general practitioner, hospital, social care and voluntary agencies, churches and community organisations are indicated.

The real-world problem of care coordination: a longitudinal qualitative study with patients living with advanced progressive illness and their unpaid caregivers

Objectives To develop a model of care coordination for patients living with advanced progressive illness and their unpaid caregivers, and to understand their perspective regarding care coordination. Design A prospective longitudinal, multi-perspective qualitative study involving a case-study approach. Methods Serial in-depth interviews were conducted, transcribed verbatim and then analyzed through open and axial coding in order to construct categories for three cases (sites). This was followed by continued thematic analysis to identify underlying conceptual coherence across all cases in order to produce one coherent care coordination model. Participants Fifty-six purposively sampled patients and 27 case-linked unpaid caregivers. Settings Three cases from contrasting primary, secondary and tertiary settings within Britain. Results Coordination is a deliberate cross-cutting action that involves high-quality, caring and well-informed staff, patients and unpaid caregivers who must work in partnership together across health and social care settings. For coordination to occur, it must be adequately resourced with efficient systems and services that communicate. Patients and unpaid caregivers contribute substantially to the coordination of their care, which is sometimes volunteered at a personal cost to them. Coordination is facilitated through flexible and patient-centered care, characterized by accurate and timely information communicated in a way that considers patients’ and caregivers’ needs, preferences, circumstances and abilities. Conclusions Within the midst of advanced progressive illness, coordination is a shared and complex intervention involving relational, structural and information components. Our study is one of the first to extensively examine patients’ and caregivers’ views about coordination, thus aiding conceptual fidelity. These findings can be used to help avoid oversimplifying a real-world problem, such as care coordination. Avoiding oversimplification can help with the development, evaluation and implementation of real-world coordination interventions for patients and their unpaid caregivers in the future.

Integrated Care in Prostate Cancer (ICARE-P): Nonrandomized Controlled Feasibility Study of Online Holistic Needs Assessment, Linking the Patient and the Health Care Team

Background The potential of technology to aid integration of care delivery systems is being explored in a range of contexts across a variety of conditions in the United Kingdom. Prostate cancer is the most common cancer in UK men. With a 10-year survival rate of 84%, there is a need to explore innovative methods of care that are integrated between primary health care providers and specialist teams in order to address long-term consequences of the disease and its treatment as well as to provide continued monitoring for recurrence. Objective Our aim was to test the feasibility of a randomized controlled trial to compare a model of prostate cancer continuing and follow-up care integration, underpinned by digital technology, with usual care in terms of clinical and cost-effectiveness, patient-reported outcomes, and experience. Methods A first phase of the study has included development of an online adaptive prostate specific Holistic Needs Assessment system (HNA), training for primary care-based nurses, training of an IT peer supporter, and interviews with health care professionals and men with prostate cancer to explore views of their care, experience of technology, and views of the proposed intervention. In Phase 2, men in the intervention arm will complete the HNA at home to help identify and articulate concerns and share them with their health care professionals, in both primary and specialist care. Participants in the control arm will receive usual care. Outcomes including quality of life and well-being, prostate-specific concerns, and patient enablement will be measured 3 times over a 9-month period. Results Findings from phase 1 indicated strong support for the intervention among men, including those who had had little experience of digital technology. Men expressed a range of views on ways that the online system might be used within a clinical pathway. Health care professionals gave valuable feedback on how the output of the assessment might be presented to encourage engagement and uptake by clinical teams. Recruitment to the second phase of the study, the feasibility trial, commenced March 2017. Conclusions To our knowledge, this study is the first in the United Kingdom to trial an online holistic needs assessment for men with prostate cancer, with data shared between patients and primary and secondary care providers. This study addresses recommendations in recent policy documents promoting the importance of data sharing and enhanced communication between care providers as a basis for care integration. We anticipate that this model of care will ultimately provide important benefits for both patients and the National Health Service. Trial Registration International Standard Randomized Controlled Trial Number (ISRCTN): 31380482; http://www.isrctn.com/ISRCTN31380482 (Archived by WebCite at http://www.webcitation.org/6s8I42u5N)

New models of follow-up in prostate cancer : a role for information technology?

Men with prostate cancer in the UK have been relatively slow to benefi t from the potential of technological and conceptual developments in e-health. While reliable data regarding these patients ’ use of the internet are lacking, a high proportion of men with prostate cancer fall on the wrong side of what has been termed the ‘ digital divide ’ , an age-related barrier raised further by socio-economic status, that separates those who use or have access to computers and the internet from those who do not [ 5,6 ] .

PROSTATE CANCER: BALANCING THE NEED TO INFORM WITH THE PATIENT’S WISH TO KNOW

In a study published in 2004, unmet information needs identified among men living with prostate cancer, informed the development of the Information Needs in Prostate Cancer Tool (INPCT) [1]. Since then we have undertaken work to validate the tool to ensure that it adequately incorporates issues relevant to men at different stages of the disease, and so maximize its potential for helping men articulate their needs throughout the prostate cancer pathway of care. Here we report findings of a recent feasibility study of the use of the revised tool in the light of current health service patient information strategies and consider their implications.

Prostate Cancer Survivorship Experience:Patient Reported Outcome Measures andFocus Group Results

Introduction: There are an ever increasing number of prostate cancer survivors. These patients are currently followed up in secondary care. Focus of care is on recurrence and acute management, not holistic care. Method: Over a 3 year period, patients attending follow-up appointments having completed treatment for organ confined prostate cancer and satisfying entry criteria were offered to join the programme. This comprises a database for PSA tracking and holistic assessment of patient needs run by a specialist nurse. The programme is supplemented by a Survivorship conference once a year, where patients have access to healthcare professionals discussing a range of topics related to prostate cancer. We assess patient satisfaction with questionnaires both pre and post conference and with a focus group in order to develop recommendations for the programme. Results: We currently have 178 on the database 55 patients and friends visited the conference, with the majority specifying they would re-attend. The majority also ranked the conference as worthwhile re-attending. After the conference, we demonstrate patient concern decreases, with disease control and understanding increasing. We also show patients prefer the community based follow-up scheme, as opposed to a hospital based follow up. Conclusion: Survivorship care has yet to be developed fully in clinical practice; this paper demonstrates how we can do this as part of a co-led approach with patients.