Insights into the impact of clinical encounters gained from personal accounts of living with advanced cancer.

Aim To describe the impact of interactions with health care professionals revealed by people’s accounts of living and dying with cancer; to explore reasons for the observed effects; and thus, to consider the implications for practice. Background The importance of practitioner–patient interactions is enshrined within professional values. However, our understanding of how and why the consultation impacts on outcomes remains underdeveloped. Stories recounted by people living and dying with cancer offer important insights into illness experience, including the impact of contact with health services, framed within the context of the wider social setting in which people live their lives. From our recent study of distress in primary palliative care patients, we describe how people’s accounts revealed both therapeutic and noxious effects of such encounters, and discuss reasons for the observed effects. Method A qualitative study with a purposive sample of 19 primary palliative care patients: (8 men, 11 at high risk of depression). In-depth interviews were analysed using the iterative thematic analysis described by Lieblich. Findings Living with cancer can be an exhausting process. Maintaining continuity of everyday life was the norm, and dependent on a dynamic process of balancing threats and supports to people’s emotional well-being. Interactions with health care professionals were therapeutic when they provided emotional, or narrative, support. Threats arose when the patient’s perception of the professional’s account of their illness experience was at odds with the person’s own sense of their core self and what was important to them. Our findings highlight the need for a framework in which clinicians may legitimately utilize different illness models to deliver a personalized, patient-centred assessment of need and care. The work provides testable hypotheses supporting development of understanding of therapeutic impact of the consultation

Identifying functional impairment and rehabilitation needs in patients newly diagnosed with inoperable lung cancer: a structured literature review.

PurposePatients newly diagnosed with inoperable lung cancer experience a symptom distress burden that may impact upon functional performance in daily activities. This structured review examines empirical evidence to see how functional limitation and rehabilitation needs are represented in the supportive care literature in this population. Early access to rehabilitation services may ameliorate the impact, but evidence of need following diagnosis is required.MethodElectronic databases Medline, Web-of-Science, Cinahl, AMED and PsychINFO were searched in April 2014. Hawker's criteria were used to assess methodological quality. The World Health Organization International Classification for Functioning Disability and Health (WHO-ICF) guided framework analysis and narrative synthesis.ResultsThirty-two articles selected for further analysis included heterogeneous studies exploring the following conceptually diverse dimensions: quality of life, symptoms, functional performance and unmet supportive care needs at diagnosis and first treatment phase. Studies, mostly utilising patient self-report measures, reveal functional impairments, limitations and restrictions influenced by personal and environmental factors across all WHO-ICF domains. Two studies included objective evaluations of function. Six studies explored functional performance as a primary aim. Five studies suggested specific or general rehabilitation interventions to address identified needs.ConclusionsNeeds associated with a diagnosis of inoperable lung cancer impact on daily life in the peri and early post-diagnostic period across all WHO-ICF domains. Specific functional impairments, limitations and restrictions and the potential role of rehabilitation services are rarely explored objectively or discussed in the supportive care literature for this population. Research is needed to guide the development of effective rehabilitation interventions acceptable to patients, health care commissioners and providers that address the impact of a new lung cancer diagnosis on functional performance

A pilot randomised controlled trial to reduce suffering and emotional distress in patients with advanced cancer

AbstractIntroductionA pilot trial was carried out to determine if a focussed narrative interview could alleviate the components of suffering and anxiety and depression in advanced cancer patients.InterventionPatients recruited were invited to participate in a focussed narrative interview and reflect on their perspectives on their sense of “meaning”, regarding suffering and their psychological, physical, social and spiritual well being – the emphasis was on allowing the patient to tell their story. Patients were encouraged to share what resources they themselves had utilised in addition to what professional care they may have received, to maintain a sense of well being.MethodPatients with advanced metastatic disease were recruited from hospices in the North West of England – the only exclusion criteria were not being able to understand written and spoken English and a non cancer diagnosis. At recruitment patients were asked to complete a numerical scale for suffering; the Brief Edinburgh Depression Scale, Edmonton Symptom Assessment Scale (ESAS), FACIT Spiritual well being questionnaire, Demographic information was collected and patients were randomised to either the intervention arm of the trial or the usual care arm of the study. Patients in both groups were invited to complete each measure at 2, 4 and 8 weeks.ResultsOne hundred people were recruited into the study – 49 were randomised to intervention group and 51 to control group. The median age of patients was 66 years age range (31–89 years) and 68% of patients were female. At baseline the ECOG performance of 75% of patients recruited was 1 or 2. The median survival of all patients in the study was 169.5 days (range 10 days to still alive at end of study). There was no significant difference at any timepoint in scores on suffering measure between intervention group and control group. At each time point the intervention demonstrated mean improvement in scores for depression and anxiety on ESAS – the greatest changes for both depression and anxiety were seen at 4 weeks.ConclusionThis pilot randomised controlled trial of a focussed narrative intervention demonstrated an improvement in mean changes in scores for depression and anxiety at 2, 4, and 8 weeks. We suggest this intervention may have beneficial effects on depression and anxiety, but a larger powered trial is required to determine the full effects

The role of day care in supporting older people living with long-term conditions.

Purpose of reviewFor older people with long-term conditions, regular structured activities within a community setting meeting others are thought to improve well being and quality of life. Historically local authority-run day care centres were widely available, but austerity measures have meant that in many areas, such provision has been markedly reduced and different models of day care services are being developed. There is little known about outcomes of day care provision for older people with long-term conditions.Recent findingsThis review has critically examined the recent evidence on outcomes of day care provision for older people with long-term conditions and will focus on three areas - physical functioning, intergenerational provision and measurement of outcomes. In terms of interventions to improve physical functioning for older people with long-term conditions attending day care, there are few studies and it is difficult to generalize but there appears to be a trend for positive impact on physical functioning when activities are incorporated into a day care programme. There is a paucity of research on intergenerational provision, however, the small number of studies suggest positive benefits. Studies measuring outcomes for older people with long-term conditions attending day care services are very limited in terms of outcome data with the exception of a Canadian study, which suggested that attendance at day care could reduce hospital attendance and admissions.SummaryThis review reveals a lack of research of day care provision for older people with long-term conditions. There is a suggestion in the small number of articles included in this review that there can be benefits both in terms of global outcomes of attendance and in improved physical functioning; there is limited evidence of the value of intergenerational provision. Robust research with collection of meaningful outcomes is required to ensure that the increasing number of older people with long-term conditions are enabled to access high-quality day care provision

Feasibility of patient reported outcome measures in psychosocial palliative care: Observational cohort study of hospice day care and social support groups

Palliative care patients can be at risk of social isolation or loneliness. Interventions that can provide effective social support, and particularly emotional support, could facilitate healthy coping that bolsters quality of life and reduces depression in palliative care patients. This is an observational cohort study which recruited thirty patients (n = 30) from the day services of four independent hospices in England. Participants completed patient reported outcome measures in perceived social support, loneliness, and depression, at up to three time points. Age range was 56–91 years, males and females were equally represented, and the sample was 93% white British. In participants that provided two or more timepoints, perceived social support increased, and loneliness and depression decreased. Largest changes with the least variation between participants was in emotional support (p = 0.165) and loneliness (p = 0.104). These results suggest that the psychosocial patient reported outcome measures used (MOS-SS, UCLA, BEDS) could be sensitive to change aligned with the goals of this intervention in palliative care. Participants in this study were observed to derive psychosocial benefit from attending the hospice day service

Management of the respiratory distress symptom cluster in lung cancer: a randomised controlled feasibility trial.

BACKGROUND: Breathlessness, cough and fatigue are distressing symptoms for patients with lung cancer. There is evidence that these three symptoms form a discreet symptom cluster. This study aimed to feasibly test a new non-pharmacological intervention for the management of the Respiratory Distress Symptom Cluster (breathlessness-cough-fatigue) in lung cancer. METHOD: This was a multi-centre, randomised controlled non-blinded parallel group feasibility trial. Eligible patients (patients with primary lung cancer and 'bothered' by at least two of the three cluster symptoms) received usual care plus a multicomponent intervention delivered over two intervention training sessions and a follow-up telephone call or usual care only. Follow-up was for 12 weeks, and end-points included six numerical rating scales for breathlessness severity, Dyspnoea-12, Manchester Cough in Lung Cancer scale, FACIT-Fatigue scale, Hospital Anxiety and Depression scale, Lung Cancer Symptom Scale and the EQ-5D-3L, collected at baseline, week 4 and week 12. RESULTS: One hundred seven patients were randomised over 8 months; however, six were removed from further analysis due to protocol violations (intervention group n = 50 and control group n = 51). Of the ineligible patients (n = 608), 29 % reported either not experiencing two or more symptoms or not being 'bothered' by at least two symptoms. There was 29 % drop-out by week 4, and by week 12, a further two patients in the control group were lost to follow-up. A sample size calculation indicated that 122 patients per arm would be needed to detect a clinically important difference in the main outcome for breathlessness, cough and fatigue. CONCLUSIONS: The study has provided evidence of the feasibility and acceptability of a new intervention in the lung cancer population and warrants a fully powered trial before we reach any conclusions. The follow-on trial will test the hypothesis that the intervention improves symptom cluster of breathlessness, cough and fatigue better than usual care alone. Full economic evaluation will be conducted in the main trial

A revised model for coping with advanced cancer. Mapping concepts from a longitudinal qualitative study of patients and carers coping with advanced cancer onto Folkman and Greer’s theoretical model of appraisal and coping

Objective To explore whether the Folkman and Greer theoretical model of appraisal and coping reflects the processes used by people living with advanced cancer. Methods Interview data from a longitudinal qualitative study with people with advanced (stage 3 or 4) cancer (n=26) were mapped onto the concepts of the Folkman and Greer theoretical model. Qualitative interviews conducted in home settings, 4-12 weeks apart (n=45) examined coping strategies, why people thought they were effective, and in what circumstances. Interviews were coded and analysed using techniques of constant comparison. Results Mapping coping strategies clearly onto the problem- or emotion-focused elements of the model proved problematic. Fluctuating symptoms, deterioration over time and uncertain timescales in advanced cancer produce multiple events simultaneously or in quick succession. This demands not only coping with a single event but also frequent repositioning, often to an earlier point in the coping process. In addition, there is substantial ongoing potential for some degree of distress rather than purely ‘positive emotion' as the final stage in the process is death with several points of permanent loss of capability in the interim. Conclusions The Folkman and Greer theoretical model is helpful in deconstructing the discrete ‘problem-focused' or ‘emotion-focused' coping mechanisms participants describe but its formulation as a linear process with a single, positive, outcome is insufficiently flexible to capture the evolution of coping for people with advanced cancer

Clinical expert guidelines for the management of cough in lung cancer: report of a UK task group on cough

Background Cough is a common and distressing symptom in lung cancer patients. The clinical management of cough in lung cancer patients is suboptimal with limited high quality research evidence available. The aim of the present paper is to present a clinical guideline developed in the UK through scrutiny of the literature and expert opinion, in order to aid decision making in clinicians and highlight good practice. Methods Two systematic reviews, one focusing on the management of cough in respiratory illness and one Cochrane review specifically on cancer, were conducted. Also, data from reviews, phase II trials and case studies were synthesized. A panel of experts in the field was also convened in an expert consensus meeting to make sense of the data and make clinical propositions. Results A pyramid of cough management was developed, starting with the treatment of reversible causes of cough/specific pathology. Initial cough management should focus on peripherally acting and intermittent treatment; more resistant symptoms require the addition of (or replacement by) centrally acting and continuous treatment. The pyramid for the symptomatic management starts from the simpler and most practical regimens (demulcents, simple linctus) to weak opioids to morphine and methadone before considering less well-researched and experimental approaches. Conclusion The clinical guidelines presented aim to provide a sensible clinical approach to the management of cough in lung cancer. High quality research in this field is urgently required to provide more evidence-based recommendations

Symptom Control Trials in Patients with Advanced Cancer: A Qualitative Study

CONTEXT:Symptom control research in patients with advanced cancer is not common. This may be the result of a belief that this research is unethical, not practical, or that patients are not interested. However, the experiences of cancer patients who have actually taken part in symptom control research near the end of life have never been detailed. OBJECTIVES:The objective was to explore the experiences of patients with advanced cancer who had taken part in symptom control trials. METHODS:A prospective two-center study was undertaken using grounded theory methodology. Theoretical sampling was used to recruit patients from one of two double-blind, randomized, placebo-controlled trials studying novel analgesic agents for cancer-related pain. Participants completed one semistructured interview. Recruitment and interviewing continued until data saturation was achieved. RESULTS:Twenty-one participants were recruited. Fifteen (71%) were male, with a mean age of 62 years. Key themes identified included reasons for trial participation, participants' interactions with the trial staff, and participants' responses to the effect the trial had on their pain. In general, participants regarded taking part in a clinical trial as a positive experience, and potentially improving overall well-being. Crucially, this was not related to whether there had been an improvement in symptoms. CONCLUSION:The findings provide grounds for optimism that patients with advanced cancer may benefit from taking part in symptom control trials, supporting the paradigm that participation in symptom control research should be encouraged in this population