bluuebunny/crossref_metadata_2025_split huggingface dataset:
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

AbstractContextRepresentations of illness have been studied in several populations but research is limited in palliative care.ObjectiveTo describe illness representations in a population with advanced disease receiving palliative care; and to examine the relationship between illness perceptions, adaptive coping and depression.MethodsA 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.ResultsScores 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.ConclusionsAssessment 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

AbstractMPM 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.AimsThis study explores how patients with malignant pleural mesothelioma (MPM) cope during the first 3 months following diagnosis.MethodsThe 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.ResultsA 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.ConclusionFew 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

AbstractIntroduction/aimsThere 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.MethodsThe 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.ResultsUsing 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).ConclusionThe 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

AbstractIntroduction and aimPalliative 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.MethodsThe 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.ResultsA 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.ConclusionThe 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

AbstractIntroductionPatients 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.MethodsPatients 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.ResultsAverage 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.ConclusionConsistency 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

AbstractIntroduction and aimsPalliative 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.MethodsIn 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.ResultsA 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%).ConclusionDifferences 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

AbstractIntroductionLung 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.AimsTo evaluate lung cancer patients' supportive care needs and predictors of increased supportive care needs.MethodsPatients 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.ResultsOf 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.ConclusionLung 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

AbstractIntroduction and aimsRecruiting 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.MethodsAnalysis 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.ResultsRecruitment 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.ConclusionRecruitment 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

AbstractIntroduction and aimsIdentifying 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).MethodsConsecutive 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.ResultsACS (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=0.745ConclusionsSPICT 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

AbstractIntroduction and aimsFollowing 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.MethodWe 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.ResultsInitial 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.ConclusionsEarly 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

AbstractIntroductionWithin 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:▶Did the volunteer training programme meet the needs of the volunteers and prepare them for their role?▶How did the volunteer programme impact on patients' experiences and satisfaction with care?▶What benefits were realised and challenges encountered from the perspective of stakeholders involved?▶What structures and processes are necessary to ensure the volunteer programme maximises its effect on future patient care?MethodsThis 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.FindingsThe 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

AbstractIntroduction and aimsPalliative 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’.MethodsCross-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.Results285 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.ConclusionThis 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.