bluuebunny/crossref_metadata_2025 huggingface dataset:
Fostering hope and enhancing end of life experiences: two Phase II RCTs of dignity therapy
Authors: Hall S , Goddard C , Speck P , Opio D , Chochinov H M , Higginson I J
Published: May 2011

Introduction and aims

Maintaining dignity and having hope are important at the end of life. The aim of these studies is to assess the acceptability and potential effectiveness of Dignity Therapy to reduce psychological and spiritual distress in people (i) with advanced cancer, and (ii) living in care homes for older people.

Methods

We randomly allocated 45 cancer patients and 60 care home residents to an intervention (Dignity Therapy) or control group. We collected outcomes in face-to-face interviews at two post intervention follow-ups: 1 and 4 weeks for cancer patients; and 1 and 8 weeks for care home residents (equivalent in the control group). The primary outcome was dignity related distress. Secondary outcomes were: hopefulness; anxiety/depression; quality of life; and acceptability (views on the intervention/taking part in the study).

Results

Cancer patients in the intervention group were more hopeful at both follow-ups. Effect sizes were large (partial η20.195 and 0.150 respectively). Baseline levels of distress were low in both studies and the two groups did not differ on measures of distress or quality of life. Residents in both groups showed a decrease in dignity-related distress at 8 weeks. Participants in the intervention groups outperformed the control groups on all acceptability items at both follow-ups. Effect sizes (Cohen's d) ranged from 0.25 to 1.09).

Conclusion

Dignity Therapy increases hopefulness for people with advanced cancer and enhances their end of life experiences and those of residents of care homes. The impact of Dignity Therapy on more distressed patients needs to be determined.
Predictors of non-remission of depression in a palliative care population
Authors: Goodwin L , Lee W , Price A , Rayner L , Monroe B , Sykes N , Hansford P , Higginson I J , Hotopf M
Published: May 2011

Introduction and aims

Prospective studies of depression in palliative care are rare. Two studies which examine depression prospectively in patients with advanced disease have not looked at predictors of remission. This study aims to explore prospective predictors of non-remission of depression in palliative care.

Methods

The study design comprised two data collections: with initial assessment on referral to a palliative care service in South London, UK and a 4-week follow-up. 76 participants met the criteria for ‘any depressive syndrome’ at the time 1 assessment using the PRIME-MD, who also participated at time 2. The outcome measure was remission (N=39) or non-remission (N=37) of depression by time 2.

Results

The findings showed that reporting low social support at time of referral was the most powerful risk factor for non-remission. There was also a strong association between improved physical symptoms, from time 1 to 2, and remission of depression.

Conclusion

This study in palliative care is the first of which we are aware to explore factors associated with non-remission of depression. Depressed patients identified with low social support on referral to palliative care might particularly benefit from additional psychosocial care in the treatment of their depression. This study provides evidence that effective physical symptom management in palliative care may be a valuable intervention for depressive symptoms.
Psychological distress in cancer outpatients: a prospective cohort study
Authors: Kleiboer A M , Hansen C Holm , Walker J , Sharpe M
Published: May 2011

Introduction and aims

Psychological distress is common in cancer patients. It can be viewed as a continuum from no symptoms at one end to psychiatric diagnoses such as major depression at the other. While major depression is likely to persist and to require treatment, there is much we need to know about patients with milder symptoms of distress. This study aimed to: (1) Describe the course of distress over 7 months in patients with clinically significant distress (HADS ≤15) at routine symptom monitoring but who did not meet criteria for major depression, (2) Determine whether demographic and clinical characteristics and severity and short-term persistence of initial distress predict significant distress at 7 months.

Methods

326 patients with a relatively good prognosis (>12 months) were recruited from two specialist NHS Cancer Centres in Scotland, UK. Patients completed the HADS at routine symptom monitoring on touch screen computers and at 1, 2, 4 and 7 months by telephone.

Results

Preliminary results showed that more than a third of patients (36%) had clinically significant distress at 7 months. The data is currently being analysed to look at the characteristics of patients with persistent distress at 7 months. These results will be presented at the conference.

Conclusion

A substantial group of patients with significant distress at routine symptom monitoring, but who do not meet criteria for major depression, have distress that persists over 7 months. These patients might benefit from treatment for their symptoms and services should be developed for these patients.
2020 Vision: improving supportive and palliative care in the age of social media and global telecommunications
Authors: Jadad A R
Published: May 2011

In the second decade of the twenty-first century, social media are ushering a second wave in the evolution of the Web. Very rapidly, applications such as Google, Wikipedia, Facebook, YouTube and Twitter have risen to be among the most used sites on the Web, re-shaping how humans communicate, learn and live. Mobile communication devices are converging with Internet-based services, penetrating every region of the planet at a speed that dwarfs the growth in the adoption of personal computers or any other preceding technological innovation. These devices can now access hundreds of thousands of applications directly through the Internet, promising to satisfy almost any human need for information and communication.

The exponential pace of evolution of information and communication technology, however, is outpacing the ability of clinicians, researchers, managers and policy makers to keep up. As a generation with the rare privilege to witness the emergence of a new set of powerful technologies that could have a profound and widespread effect on society, we must look beyond the hype, and try our best to understand what works, what does not work and what could be harmful.

This session will give participants an opportunity to learn about emerging innovations in social media that could enable us to reduce unnecessary suffering. It will also underscore key methodological, political, cultural, technological and financial challenges that must be addressed urgently if we are to harness their power to improve the way in which we design, develop, provide, receive and evaluate supportive and palliative care services.
Pain and depression in cancer patients: a longitudinal study
Authors: Jack L , Scott A , Colvin L , Laird B , Fallon M
Published: May 2011

Introduction

Although pain and depression co-exist in 36.5% of cancer patients, the precise nature of the relationship between these symptoms requires elucidation. This study aimed to further understanding of the relationship by determining whether improved pain is associated with a significant reduction in depression and increased quality of life in cancer patients.

Methods

A secondary data analysis of patients enrolled in pain intervention studies (n=123) was undertaken. Pain, depression and quality of life were measured at baseline and endpoint using the Brief Pain Index (BPI), Hospital and Anxiety and Depression Score (HADS) and EuroQol Thermometer assessment tools respectively. The Mann-Whitney U-test and Fisher's Exact Test were used to statistically analyse score differences between pain response groups.

Results

Baseline BPI, HADS and EuroQol scores were well matched between the groups. Patients responding to pain interventions had an average 2.95 point decrease in endpoint HADS scores, contrasting with a 0.89 increase in non-responding patients (score range 0–42). There was a statically significant difference in the endpoint total HADS scores between the two groups (p=0.0015). Similar mean changes in EuroQol scores revealed increased quality of life scores occurring in patients with (10.64) and without (12.41) improved pain.

Conclusions

Improving pain results in reduced depression scores. This supports a unidirectional relationship between pain and depression. Further study is required to establish the presence of a bidirectional relationship. Understanding the relationship between pain and depression allows prioritisation of targeted management of co-existent pain and depression, which may improve the clinical care of cancer patients.
Identifying patients psychological needs in oncology consultations: an exploration of rates of discussion and patterns of referral
Authors: Warrington L , Velikova G
Published: May 2011

Background

High levels of emotional distress are common in cancer patients but oncologists often report feeling ill-equipped to discuss these issues. Little information exists on the discussion of depression and anxiety within consultations and how further support is offered.

Aims

The current study aims to determine the frequency of discussion of depression and anxiety within consultations and how often referrals and prescriptions are offered and made.

Method

28 oncologists and 286 cancer patients were recruited to a randomized controlled trial examining the effects of the regular collection and use of health-related quality-of-life data in oncology practice on process of care and patient well-being. Each patient was recorded at four consecutive consultations, which were then analysed using content analysis. Descriptive data relating to the discussion of depression and anxiety and the offer and uptake of referrals and prescriptions was then extracted using SPSS version 16.0.

Results

Depression and anxiety was discussed with 17.5% of patients in at least one of the four consultations. Referrals were offered to 6.6% and made for 1.4% of patients.1.7% mentioned ongoing psychosocial care. Prescriptions were offered to 3.5% and made for 1.4% of patients. 4.9% mentioned ongoing psychotropic medications. 42% of patients who discussed depression or anxiety with their doctors were not offered any further support.

Conclusion

Depression and anxiety are not routinely discussed in oncology consultations and if discussed; patients are not always offered further support. Oncologists could benefit from a clear pathway of how to manage distress and make patients aware of support available.
Lung cancer survivorship: patients' and carers' views of after care
Authors: Calman L , Beaver K , Roberts C
Published: May 2011

Introduction and aims

Evidence for the management of patients after treatment is limited and particularly so for patients with advanced cancer. There is little empirical evidence to establish best practice in the after care of lung cancer patients. The aim of this study was to develop an understanding of patients' and carers' views of their aftercare and to integrate these into a new intervention.

Methods

A qualitative approach was taken using the principles of grounded theory. 35 interviews were conducted with patients and carers, participants had a range of histological diagnoses and stage of cancer and all treatment options were included in the sampling strategy.

Results

The period after treatment was highlighted as a difficult time for participants with anxiety and uncertainty after the ‘treadmill’ of treatment. Follow-up appointments provided significant reassurance about the patients' condition, which participants felt was best assessed by x-ray. Despite often poor prognosis the focus was to ‘get back to normal’ and live life to the full. Participants highlighted a lack of appropriate information after treatment, specific information about long term effects of treatment, symptoms and disease progression/recurrence. Transitions between teams were important concerns which led to worries about rapid access back to treatment/specialists.

Conclusion

Patient and carer preferences should be incorporated into the development of interventions; they have revealed important issues that impact on the day-to-day lives of people living with lung cancer, specifically, targeted information focusing on aftercare issues, care planning and identification of key contacts to manage care and transitions.
Widening participation in West Hertfordshire Hospices: enhancing access and diversity
Authors: Williams H , Papadopoulos I , Kelly D
Published: May 2011

Introduction

Hospices have an established goal to meet the needs of local communities. These communities are increasingly diverse and provide important sources of goodwill and financial support. However, previous research has indicated that negative perceptions may also be associated with hospices; with Christian values being promoted and death being the primary focus.

Aims

The aims of this research were to help understand access issues to hospice services in West Hertfordshire and to identify barriers that may prevent marginal community groups, including the Gypsy Traveller community, from using these services. Actions were identified to help reduce access barriers in the future.

Methods

A mixed method design, including a literature review, was implemented and 44 individuals shared their views about hospice care. Data collection tools included semi structured interviews, focus groups and email surveys.

Findings

Key findings confirmed existing negative attitudes towards hospice services. There was a perception that some professionals would not refer those who did not fit the ‘typical’ patient profile (ie, limited prognosis and no cultural mismatch). Practical concerns included lack of appropriate food, caring practices and environment. This presentation will concentrate on the Gypsy Traveller community as exemplar case.
A systematic review of complementary and Alternative medicine interventions in the management of cancer-related fatigue
Authors: Finnegan-John J , Molassiotis A , Richardson A , Ream E
Published: May 2011

Introduction and aims

Fatigue, experienced by patients during and following cancer treatment, is a significant clinical problem. It is a prevalent and distressing symptom yet pharmacological interventions are used little1 and confer limited benefit for patients.2 However, many cancer patients use some form of Complementary and Complementary medicine (CAM) and some evidence suggests it may relieve fatigue.3 A systematic review was conducted to appraise the effectiveness of CAM interventions in ameliorating cancer-related fatigue (CRF).

Methods

Systematic searches of biomedical, nursing and specialist CAM databases were conducted, including Medline, Embase and AMED (August 2010). Included papers described interventions classified as CAM by the National Centre of Complementary and Alternative Medicine, and evaluated through randomised controlled trial (RCT) or quasi experimental design.

Results

15 studies were eligible for the review, of which 12 were RCTs. Forms of CAM interventions examined included acupuncture, massage, yoga and relaxation training. Findings suggested acupuncture, medical qigong and restorative yoga are somewhat effective for reducing CRF, whereas vitamins, massage and hypnosis are not.

Conclusion

Acupuncture appeared to confer most benefit to patients. However, trials incorporated within the review varied greatly in quality; most were methodologically weak and at high risk of bias. Consequently, there is currently insufficient evidence to conclude with certainty the effectiveness or otherwise of CAM in reducing CRF. The design and methods employed in future trials of CAM should be more rigorous; increasing the strength of evidence should be a priority.
Developing the clinical assessment of female sexual difficulties after pelvic radiotherapy
Authors: White I D , Allan H , Faithfull S
Published: May 2011

Introduction and aims

Pelvic radiotherapy creates physical and psychological effects that impact negatively on the sexual well-being of women and their partners. The aim of this ethnographic study was to develop an assessment methodology to improve the clinical assessment of sexual morbidity following radiotherapy in women with pelvic malignancy.

Methods

Observation of follow-up clinics (50 gynaecological, 19 colorectal consultations) plus interviews with women (n=24), partners (n=5) and health professionals (n=20) explored sexual morbidity assessment after treatment completion. Women with pelvic malignancy who had completed radical radiotherapy 3, 6, 12 and 24 months previously were included. Doctors, nurses and therapy radiographers were interviewed to establish professional perspectives on assessment. Observation and interview data were analysed using both SPSS v.14 and NVivo v.2 software.

Results

Consultations focused on disease surveillance, specific aspects of toxicity monitoring and managing active symptoms. Sexual concerns were not routinely assessed in gynaecological (11/50) or colorectal (6/19) clinics. Health professionals felt inhibited discussing sexual concerns with older women and when partners were present. Patient and partner interviews revealed inconsistency in the management of treatment induced menopause, inadequate knowledge of sexual health resources and unidentified difficulties including loss of desire, dyspareunia and reduced sexual satisfaction.

Conclusions

Traditional models of medical follow-up may not offer an appropriate clinical context for the optimal assessment and management of sexual concerns associated with pelvic radiotherapy. These findings are important for the development of survivorship services and can inform the training of health professionals engaged in post-treatment toxicity assessment, patient information and support.
Perceptions of prostate cancer in black African and Caribbean men: a systematic review
Authors: Pedersen V H , Armes J , Ream E
Published: May 2011

Introduction and aims

Prostate cancer (PC) is common and affects black African and Caribbean men disproportionally. Awareness of PC is low in these groups, but knowledge is lacking about other factors that may deter information seeking or getting tested for PC. The aim of the review was to appraise and synthesise research on knowledge and perceptions of PC among black men.

Methods

Four medical and social science databases were systematically searched and reference lists of relevant papers hand searched. Non-English publications were excluded. Qualitative findings were synthesised using comparative thematic analysis, to which quantitative findings were incorporated.

Results

13 qualitative studies and 20 cross-sectional surveys were included. All except one were conducted in North-America. The analysis identified individual, cultural and social factors likely to impact on black men's awareness of, and willingness to be tested for, PC. Black men's awareness of personal risk of PC varied greatly between studies. Misunderstandings regarding methods of diagnosis and treatment were widespread. PC testing and treatment were perceived as threatening to men's sense of masculinity. Mistrust of the healthcare system, limited access to healthcare and lack of consistent, trusting relationships with health professionals were also prominent.

Conclusion

These factors could contribute to late PC diagnosis and should be taken into account when planning PC services and communicating with black men who seek prostate care. Further, the review demonstrated a need for high quality studies in Europe to determine the relevance of the review findings for black European men.
Formulations of living with cancer: a discursive analysis of nurse talk
Authors: Hubbard G , Forbat E
Published: May 2011

Aim

This presentation is regarding a study of the ways in which living with cancer is being formulated by acute sector nurses.

Introduction

More complete definitions of cancer survivorship are emerging as evidence accumulates regarding the subject. Yet, what living with cancer is and how it is being formulated by nurses has not been published.

Methods

The Discursive Action Model1 provided the theoretical and methodological guide to examine the constructive and functional dimensions of verbal accounts of 20 health professionals, mainly acute sector nurses, gathered during three focus groups conducted in 2008/2009.

Results

To the best of our knowledge, this is the first study to report health professional formulations of living with cancer in the UK. It illustrates the key discursive manoeuvres used by acute sector nurses to construct cancer as a long-term illness, which include the description of on-going physical and psychosocial effects, particularly fear and risk, of recurrence. Importantly, the rationale for locating on-going support in the acute versus community sector is constructed as derived from patient feedback, not from the acute-based staff themselves.

Conclusion

Implications for cancer survivors: Cancer is being constructed as a significant and powerful disease as opposed to a trivial and time-limited one; this lends legitimacy to calls for on-going surveillance and support for cancer survivors. The profession that positions itself as being the experts and specialists in cancer is likely to be able to make the claim to provide on-going support with the most authority.
Celebrating user involvement in research
Authors: Rainey P , Morris C , Kendall M , Murray S A , Cameron D
Published: May 2011

Background

This year the scientific committee has examined abstract submissions for evidence of User Involvement that is,

▶

Present from the early stages of the research cycle (eg, generating ideas, prioritising, study design).

▶

Collaborative – working as co-researchers – not simply commenting on completed work.

▶

Innovative – (eg, presenting to funding/ethics boards undertaking interviews, leading dissemination in some areas).

▶

And has created a tangible output which has contributed to the conduct of the study (eg, protocol writing, higher recruitment, richer data).

Aims

To highlight and acknowledge those researchers who have demonstrated a high level of commitment to User Involvement in their work.

To emphasise the importance of collaborating with service users in research and to offer some insight into the future of User Involvement in SUPAC research.

Methods

Professor David Cameron, Clinical Director at the Edinburgh Cancer Research Centre and former Director of NCRN, will reflect on the significance of User Involvement during his time at NCRN and offer some personal insight into how best SUPAC research might flourish. Following this talk, three shortlisted candidates for this year's User Involvement Award will take part in a short discussion about their work, following which a presentation will be made to the winner.
Illness perceptions, adjustment to illness and depression in a palliative care population
Authors: Price A , Goodwin L , Rayner L , Shaw E , Hansford P , Sykes N , Monroe B , Higginson I J , Hotopf M , Lee W
Published: May 2011

Context

Representations of illness have been studied in several populations but research is limited in palliative care.

Objective

To describe illness representations in a population with advanced disease receiving palliative care; and to examine the relationship between illness perceptions, adaptive coping and depression.

Methods

A cross-sectional survey of 301 consecutive eligible patients recruited from a palliative care service in South London, UK. Measures used included the Brief Illness Perception Questionnaire (Brief IPQ), the Mental Adjustment to Cancer Scale (MAC) and the PRIME-MD PHQ-9.

Results

Scores were not normally distributed for the majority of the questions on the IPQ. The correlations found between items on the Brief IPQ were understandable in the context of advanced disease. MAC hopelessness-helplessness and fighting spirit were highly correlated with items on the brief IPQ in opposite directions. The Brief IPQ domains of consequences, identity, concern, personal control and emotion were associated with depression; a relationship which was not explained by adaptive coping. Seven causal attribution themes were identified: Don't know, personal responsibility, exposure, pathological process, intrinsic personal factors, chance/fate/luck and other. Both lung cancer diagnosis and gender were found to be independently associated with personal responsibility attribution. None of the attribution themes were associated with the presence of depression.

Conclusions

Assessment of illness perceptions in palliative care is likely to yield important information about risk of depression and will help clinicians to personalise management of advanced disease.
‘It's all bad news’: the first 3 months following a diagnosis of malignant pleural mesothelioma (MPM)
Authors: Arber A , Spencer L , Parker A
Published: May 2011

MPM is a rare cancer with a rising incidence associated with asbestos exposure. The disease is invariably fatal with many people dying within a year of diagnosis, with typical survival of only 7–10 months.

Aims

This study explores how patients with malignant pleural mesothelioma (MPM) cope during the first 3 months following diagnosis.

Methods

The study uses narrative interviews with 10 people diagnosed with MPM during the first 3 months following diagnosis, from two hospital trusts in the UK. Data was analysed using the constant comparative method to identify common categories and then themes.

Results

A key theme that emerged from the data was the feeling of hopelessness associated with MPM in that it is ‘all bad news’. Participants describe suffering distress around how their disease will progress. They avoid seeking information as everything they hear about the disease is so negative and there are few effective treatments available. The study identifies a lack of psychosocial and emotional support for people with MPM leading to a sense of isolation, fear and uncertainty about the future and the progress of the disease. Participants report receiving little help and advice related to significant symptoms such as sweating, pacing themselves and coping with breathlessness on exertion.

Conclusion

Few patients received an early referral to specialist palliative care. A palliative rehabilitative approach is recommended early on following diagnosis to support hope and manage the many physical symptoms and emotional distress.
The relationship between an inflammation-based prognostic score (Glasgow Prognostic Score) and survival in cancer patients in the hospice setting
Authors: Cunningham L J , Buchanan D
Published: May 2011

Introduction/aims

There is increasing evidence that an ongoing systemic inflammatory response is associated with poor outcome in cancer patients. The object of this study was to assess whether an inflammation-based prognostic score (Glasgow Prognostic score, GPS) was associated with survival in patients admitted to a specialist palliative care unit.

Methods

The GPS scores were constructed as follows: patients with both an elevated C reactive protein level (>10 mg/l) and hypoalbuminemia (<35 g/l) were allocated a GPS score of 2. Patients who had only one of these two biochemical abnormalities were allocated a GPS of 1. Patients with neither abnormality were allocated a GPS of 0. This GPS was prospectively calculated in patients (n=77) over a period of 4 months. The date of admission to date of death (or censor date if death had not occurred by end of study) was also calculated for each patient.

Results

Using Kaplan Meier survival curves, it was highlighted that patients with a higher GPS score had a shorter survival time than those with a lower GPS score (p=0.001). Specifically, patients with a GPS score of 2 had a much shorter survival than those with a lower GPS score of 0 or 1(p<0.001). Furthermore, patients with a GPS score of 1 or 2 had a shorter survival than those with a GPS of 0 (p=0.012).

Conclusion

The presence of a systemic inflammatory response (GPS) is significantly associated with cancer-specific survival and may be a useful indicator of poor outcome in cancer patients in the hospice setting.
Palliative care in developing countries: University of Ilorin Teaching Hospital Experience
Authors: Kolawole I K , Sleiman Z A , Olafimihan K O
Published: May 2011

Introduction and aim

Palliative care services have started springing up in some tertiary health institutions in Nigeria in recent time. University of Ilorin Teaching Hospital is one of these institutions. This paper presents our experience over a period of 20 months, and highlight the challenges of providing palliative care in a hospital primarily set up to provide curative and preventive healthcare services.

Methods

The case notes of all the patients seen by the palliative care unit over a period of 20 months, (May 2009 to December 2010), were reviewed. Data collected include demographic characteristics, sources of referral, reason for referral, primary diagnosis, patients' symptoms and interventions provided.

Results

A total of 113 patients, (84 females and 29 males), with various forms malignancies were seen during the study period. The age ranged between 18 and 90 years with a mean of 63.7 years. The commonest form of malignancy was cancer of the breast, which occurred in 54 (47.8%) patients followed by colorectal carcinoma 11 (9.7%). Pain was the commonest (77%) indication for referral to the unit. Interventions provided included pain and symptom control, psychotherapy, counselling, spiritual support, home care and Bereavement support. The overall mortality for the period of the study was 39.8%. Major challenges include financial constraints, high patient drop-out rates due to inability to pay care costs, inadequate awareness of service and lack of vehicle for home visit.

Conclusion

The palliative care unit of the University of Ilorin Teaching Hospital has made significant impact on the lives of patients and their families suffering from various forms of malignancies. Though relatively new, the unit has a great potential for growth.
Evaluation of the Palliative Care Outcome Scale (POS) in chronic heart failure patients
Authors: Ma A , Reid J , Ness A , O'Donnell M , Yellowless D , Boyd K , Murray S A , Denvir M
Published: May 2011

Introduction

Patients with chronic heart failure (CHF) suffer significant mortality and morbidity. New patient-centred methods of assessing quality of life are needed that focus on supportive and palliative care needs. We aimed to assess a previously validated palliative care outcome scale (POS) questionnaire in patients with CHF.

Methods

Patients seen by Specialist Heart Failure Nurses in outpatient clinics and on home visits were recruited. POS questionnaires were completed by patients at three time points over an 8 week period. Specialist Heart Failure Nurses completed a POS at baseline for each patient. Patients completed the Euroqol EQ5D at the end of the study.

Results

Average age was 73, and all patients had left ventricular failure. 32 patients completed the baseline questionnaire; 25 completed questionnaires at all 3 time points. Patient POS scores were significantly consistent between time points (p<0.0001) and a significant correlation was found between patient POS and EQ5D scores (p=0.019). Patient POS scores did not correlate significantly with staff POS scores, NYHA class, number of comorbidities or mortality predicted by the Seattle Heart Failure Model. Staff POS scores under-predicted patient scores for 20 out of 28 patients.

Conclusion

Consistency between POS scores at different time points and a significant correlation to EQ5D scores suggest that the POS questionnaire has a degree of robustness in assessing patient-perceived quality of life. The lack of correlation between patient perception and ‘objective’ measures of health deserves further exploration, as does the apparent over-estimation of quality of life by nursing staff.
Characteristics of adequate outcome of continuous palliative sedation
Authors: Buma S , Brinkkemper T , Swart S J , Rietjens J A C , Deliens L , Ribbe M , Loer S A , Zuurmond W W A , Perez R S G M
Published: May 2011

Introduction and aims

Palliative sedation is a palliative care intervention for relieving severe suffering in the last phase of life. This study aims to distinguish characteristics of adequate sedation outcome compared to less favourable outcome based on physicians' reports.

Methods

In 2008, a structured questionnaire was sent to a random sample of 1580 physicians working in general practice, nursing homes and hospitals regarding their last patient receiving continuous sedation until death. Adequate outcome was defined as cases where adequate relief of symptoms, good to very good quality of death and no adverse reactions were reported by the physician.

Results

A total of 606 physicians (38%) filled out the questionnaire, of whom 370 (61%) reported about their last case of continuous deep sedation. Cases characterised as adequate outcome (n=110) significantly more often had nausea (16% vs 7%), but less often delirium (7% vs 15%) as decisive indication for palliative sedation. Significantly more often, cases defined as adequate were sedated with the (partial) intention of hastening death (19% vs 13%), exhibited a shorter median duration of sedation (32 (IQR 16–48) versus 48 (IQR 24–73) h), had a shorter median duration to reach the required sedation depth (2 (IQR 1–4) versus 4 (IQR 2–12), were more often sedated deeper (94% vs 84%) and received a stable administration of benzodiazepines and opioids (52% vs 26%).

Conclusion

Differences between perceived adequate and less adequate sedation outcome may be related to intention and mode of administration of palliative sedation.
Prevalence and predictors of supportive care needs in lung cancer patients
Authors: Buchanan D , Milroy R , Baker L , Thompson A M , Levack P
Published: May 2011

Introduction

Lung cancer is a disease of high symptom distress, increased psychosocial burden, short survival and a high mortality. The Palliative Outcome Scale (POS) can be used to assess individuals' supportive care needs.

Aims

To evaluate lung cancer patients' supportive care needs and predictors of increased supportive care needs.

Methods

Patients completed questionnaires on any visit. Total POS score and prevalences of individual items and were calculated. Demographics and clinical variables were recorded. Predictors of increased supportive care needs were evaluated using logistic regression.

Results

Of 353 patients, 303 fully completed POS. At least one unmet supportive care need was identified in 97.4% of patients. POSx=9.81 (SD5.87, 95%CI 9.15 to 10.47). Prevalence of moderate to severe symptoms were: 56.9% perceived support network anxiety, 45.6% personal anxiety, 40.8% pain, 30.5% had unmet information needs, 29.6% reduced self-esteem, 20.1% practical matters needed addressed, 21.2% able to share feelings occasionally or less, 17% affected by ‘other’ symptoms, 12.1% low life-worth and 9.6% felt at least ½ a day had been wasted through healthcare appointments. An increased POS score was significantly predicted by: poor performance status (PS=2, OR 3.99 CI 1.83 to 8.70; PS=3–4, OR 7.62 CI 3.49 to 16.61), age less than 65 years (OR 0.37 CI 0.19 to 0.73) and presence of increasing respiratory symptoms (OR 1.48 CI 1.23 to 1.78). There was no significant effect from gender, histology, stage, time from diagnosis, treatment type or deprivation category.

Conclusion

Lung cancer patients have significant supportive care needs. Poorer physical function, younger age and presence of respiratory symptoms predict increased needs.
Recruiting malignant & non-malignant disease patients: lessons from a palliative care RCT
Authors: Farquhar M , Brafman-Kennedy B , Higginson I J , Booth S
Published: May 2011

Introduction and aims

Recruiting patients to palliative care randomised controlled trials (RCTs) is challenging. This paper describes and analyses recruitment trajectories for patients with malignant and non-malignant disease to a palliative care RCT, outlining lessons learned.

Methods

Analysis of descriptive recruitment statistics (patient identification and response rates) to a Phase II pilot pragmatic single-blind fast track RCT, and subsequent Phase III RCT, of a breathlessness intervention service for advanced disease. Phase II piloted COPD patients only, whereas Phase III RCT incorporated two sub-protocols: for patients with malignant or non-malignant disease. Documentary analysis of: recruitment activity log, Trial Management and Advisory Group minutes and fieldnotes.

Results

Recruitment targets for patients with non-malignant disease were achieved. The pathway to recruitment was through referral to the service therefore referral rates impacted on recruitment alongside response rates. Recruitment of cancer patients was considerably slower despite concerted efforts to increase referrals by raising the service profile. Referrals only improved for the latter when a researcher attended clinics, supporting clinical staff in patient identification. Predictably, response rates remained lower than for non-malignant disease patients.

Conclusion

Recruitment was partly referral-driven, therefore gate-keeping did not explain the differences. Clinical inter-professional relationships consolidated in Phases 0-II drove early referrals of non-malignant disease patients. Local palliative care services were available for cancer patients. Consideration of the natural history and context of a service is therefore important when predicting recruitment. Pilot trials are informative, but should include qualitative elements and all disease groups. Placing researchers in relevant clinical settings is helpful.
Identifying end of life needs in acute cardiac patients: a comparison of prognostic tools
Authors: Woolcock R , Fenning S , Haga K , Skene C , Boyd K , Murray S A , Denvir M
Published: May 2011

Introduction and aims

Identifying patients with non-malignant disease in the hospital setting who might benefit from palliative and supportive care is challenging. There is little research in this area. A screening tool, the Scottish Palliative Care Indicator Tool (SPICT) was developed to help identify acute cardiac patients who might benefit from supportive/palliative care. We aimed to compare this new tool with the Gold Standards Framework Prognostic Indicator Guide (GSF-PIG)and two clinical prognostic scores currently used in hospital practice (GRACE and Seattle).

Methods

Consecutive patients admitted to a cardiology ward with acute coronary syndrome (ACS) and acute heart failure (AHF) over a 4 week period were identified. Data for SPICT, GSF-PIG, GRACE (estimated 6 month% mortality) and Seattle scores (estimated 12 month% mortality) were obtained from patient records and by interviews with hospital staff.

Results

ACS (78)AHF (16)% meeting criteriaMean GRACE score(% (SD))% meeting criteriaMean Seattle score (% (SD))SPICT negative92.310.0 (9.9)75.013.2 (8.2)SPICT positive7.720.0 (12.4)25.013.3 (7.3)p value(t test)p=0.022p=0.985GSF negative84.49.5 (9.8)37.512.3 (11.6)GSF positive15.617.0 (11.3)62.513.7 (4.9)p value(t test)p=0.019p=0.745

Conclusions

SPICT and GSF identified ACS patients with significantly higher risk of death within 6 months of discharge. Neither prognostic tool appeared to predict Seattle score mortality in patients with AHF. SPICT and GSF have equivalent predictive utility in identifying acute cardiac patients nearing end-of life.
Promoting supportive and palliative care research by a management fellow
Authors: Donaldson A , Barclay S , Dale J , Daveson B , Epiphaniou E , Harding R , Higginson I J , Mason B L , Munday D , Nanton V , Shipman C , Murray S A
Published: May 2011

Introduction and aims

Following a successful bid to undertake research into co-ordination of palliative care needs of patients within the generalist setting, the research team was offered the opportunity to employ an NHS manager to become a ‘Management Fellow.’ The aim was to provide a means to embed research expertise in the local NHS area through the personal development of the fellow: including training in research methods, assistance in all stages of the research process and taking a lead in the subsequent dissemination throughout the clinical areas.

Method

We enlisted a Clinical Nurse Manager half time while she continued to work 50% within the Acute Hospital structure. The management fellow recruited has become immersed in the world of research. The fellow is also the subject of an auto-ethnographic exploration of the tensions involved in integrating her own clinical practice with her role as a researcher.

Results

Initial findings show that the management fellow has adapted to the joint clinical management/research role, facilitating integration into research site, assisting with recruitment of participants and identifying methods to ensure effective knowledge exchange and mobilisation within her substantive role as Clinical Nurse Manager.

Conclusions

Early indications are that by ensuring a management representative on the research team the research pathway can be smoothed to allow effective research to be undertaken. The management fellow is ideally place d to facilitate the research team's presence and through immersion becomes supportive and understanding of the importance of research. Finally the management fellow is well situated to ensure effective knowledge mobilisation within the clinical areas.
Introducing volunteers into chemotherapy day units: a mixed methods evaluation
Authors: Wiseman T , DeBerker D , Miller C , Griffin M , Richardson A
Published: May 2011

Introduction

Within many USA Cancer Centres, the presence of volunteers is an important factor for improving patient experience. The purpose of this study was to evaluate a pilot project of introducing a volunteer role to support cancer patients using two Chemotherapy Day Units. The study sought to answer the following questions:

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Did the volunteer training programme meet the needs of the volunteers and prepare them for their role?

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How did the volunteer programme impact on patients' experiences and satisfaction with care?

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What benefits were realised and challenges encountered from the perspective of stakeholders involved?

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What structures and processes are necessary to ensure the volunteer programme maximises its effect on future patient care?

Methods

This mixed methods evaluation was exploratory and spanned 1 year. Data collection included:

A prospective audit of patients' experiences and satisfaction with care undertaken at baseline and end of the pilot project.

Questionnaires and interviews with volunteers at the end of the project.

Interviews with staff and stakeholders at the end of the project.

Findings

The evaluation revealed the introduction of volunteers in cancer services was successful. The training programme met the volunteers' needs, prepared them for their role. It also fostered feelings of being supported and part of a team. The patient survey and staff interviews revealed volunteers enhanced patients' experience and satisfaction with care. The evaluation has shown how a ‘neutral’ person can have a positive impact on patient care. Much of the volunteers' time was spent talking to patients and providing companionship which was appreciated by patients and carers. Staff and stakeholder interviews revealed benefits in terms of ‘bridging the gap’ between the healthcare team and the patient and family. The results have provoked discussion about how best to sustain this initiative and incorporate others areas of care delivery. Presently volunteers are being prepared for other areas of the service.
Spiritual wellbeing in sub-Saharan Africa: the meaning and prevalence of ‘feeling at peace’
Authors: Selman L , Harding R , Higginson I J , Gysels M , Speck P ,   The Encompass Collaborative
Published: May 2011

Introduction and aims

Palliative care (PC) is an urgent public health issue in Africa, but evidence to inform the spiritual dimension of PC is lacking. Feeling at peace is strongly correlated with spiritual wellbeing (SWB), and occurs in spiritual measures validated cross-culturally in PC populations. We aimed to:

Determine levels of SWB among PC patients in South Africa and Uganda.

Explore how patients interpret ‘feeling at peace’.

Methods

Cross-sectional survey using the APCA African Palliative Outcome Scale (POS) item: ‘Over the past 3 days, have you felt at peace?’ (‘0= no, not at all’ – ‘5= yes, all the time’).

Semi-structured interviews including cognitive interviewing of the POS, analysed thematically.

Results

285 patients surveyed; mean age 40.1; 69.1% women; diagnosis: 80.7% HIV; 17.7% cancer; 1.6% other. Mean peace score 2.92. 27.0% scored 0–1.

72 patients interviewed in 7 languages. Mean age 45.1; 66.7% women; diagnosis: 59.7% HIV; 40.3% cancer. Interpretations of peace fell into four categories: perception of self/ world (peace as a feeling/acceptance/experience); relationship with others; relationship with God; health-related. Barriers to peace included uncontrolled pain, stigma, economic/family worries.

Conclusion

This is the first study into the SWB of PC patients in sub-Saharan Africa. >25% of patients had not felt at peace in the previous 3 days, or only very rarely. Feeling at peace was interpreted in existential, social, religious and physical terms. Asking whether a patient feels at peace may be effective in eliciting concerns in African PC.
Developing and testing a measure to describe the quality of cancer MDT meetings
Authors: Taylor C , Atkins L , Richardson A , Ramirez A-J
Published: May 2011

Introduction and aims

Cancer multidisciplinary teams (MDTs) aim to improve clinical outcomes, co-ordination of care and patient experience by including all relevant health professionals in discussions about individual patients. A central activity is thereby the MDT meeting (MDM) where cases are discussed and recommendations agreed. MDTs vary in performance according to national peer review data but no standardised measures of MDT effectiveness exist. We have developed an observational measure of MDM quality and conducted preliminary tests of its application.

Methods

13 key characteristics of MDM effectiveness within 4 domains were included: The Team; Infrastructure for meetings; Meeting organisation and logistics; and Clinical decision-making. Quality criteria were derived from literature review, observing MDMs and expert input. Inter-rater reliability and expert validity were tested and confirmed. A manual was developed describing each characteristic and the quality criteria (from ‘insufficient’ to ‘fully comprehensive’), and the measure was applied to 10 bowel MDTs.

Results

Observation was acceptable to teams and feasible to do within the restraints of a busy MDT meeting. Preliminary application demonstrated wide diversity in quality between teams across all four domains. A degree of internal consistency in quality within teams was evident. Teams were most likely to meet ‘fully comprehensive’ criteria in relation to administrative preparation and attendance at meetings; and least likely for patient-centredness of decision-making, presentation of minimum dataset and prioritisation of the agenda.

Conclusions

Preliminary application suggests the measure may contribute to the assessment of MDT performance. Further testing to confirm the validity and reliability is required.