Are There Differences in the Prevalence of Palliative Care-Related Problems in People Living With Advanced Cancer and Eight Non-Cancer Conditions? A Systematic Review

Moens, Katrien; Higginson, Irene J; Harding, Richard; Brearley, Sarah; Caraceni, Augusto; Cohen, Joachim; Costantini, Massimo; Deliens, Luc; Francké, Anneke L.; Kaasa, Stein; Linden, Karen; Meeussen, Koen; Miccinesi, Guido; Onwuteaka‐Philipsen, Bregje D.; Pardon, Koen; Pasman, Roeline; Pautex, Sophie; Payne, Sheila; Block, Lieve Van den

doi:10.1016/j.jpainsymman.2013.11.009

Cited by 356 publications

(264 citation statements)

References 144 publications

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“…Weakness and poor mobility were the most commonly reported symptoms here, and are corroborated elsewhere [40]. The rising symptom burden in the last year of life has been noted in recent research [41][42][43], and is compounded by co-morbidity and the changing demographics linked to an ageing population [44,45]. Whilst existing research suggests that the trajectory of rising symptom burden is not unusual, our IPOS data indicated a slight decrease in symptom burden and, although not statistically significant (p = 0.3120), these findings point to high quality end of life care and support a trend towards achieving earlier intervention.…”

Section: Discussionsupporting

confidence: 87%

Impact of the Macmillan specialist Care at Home service: a mixed methods evaluation across six sites

et al. 2018

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Background: The Midhurst Macmillan Specialist Palliative Care at Home Service was founded in 2006 to improve community-based palliative care provision. Principal components include; early referral; home-based clinical interventions; close partnership working; and flexible teamwork. Following a successful introduction, the model was implemented in six further sites across England. This article reports a mixed methods evaluation of the implementation across these 'Innovation Centres'. The evaluation aimed to assess the process and impact on staff, patients and carers of providing Macmillan Specialist Care at Home services across the six sites. Methods: The study was set within a Realist Evaluation framework and used a longitudinal, mixed methods research design. Data collection over 15 months (2014)(2015)(2016) Qualitative data methods included: focus groups with project team and staff (n = 32 groups with n = 190 participants), and, volunteers (n = 6 groups with n = 32 participants). Quantitative data were analysed using SPPS Vs. 21 and qualitative data was examined via thematic analysis. Results: Comparison of findings across the six sites revealed the impact of their unique configurations on outcomes, compounded by variations in stage and mode of implementation. PPS, PPI and IPOS data revealed disparity in early referral criteria, complicated by contrasting interpretations of palliative care. The qualitative analysis, CSNAT and VOICES-SF data confirmed the value of the Macmillan model of care but uptake of specialist home-based clinical interventions was limited. The Macmillan brand engendered patient and carer confidence, bringing added value to existing services. Significant findings included better co-ordination of palliative care through project management and a single referral point and multi-disciplinary teamwork including leadership from consultants in palliative medicine, the role of health care assistants in rapid referral, and volunteer support. Conclusions: Macmillan Specialist Care at Home increases patient choice about place of death and enhances the quality of end of life experience. Clarification of key components is advocated to aid consistency of implementation across different sites and support future evaluative work.

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Section: Discussionsupporting

confidence: 87%

Impact of the Macmillan specialist Care at Home service: a mixed methods evaluation across six sites

et al. 2018

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“…Breathlessness was fully relieved for only 22% of patients. Prescription of as-needed medications for all symptoms was significantly lower among COPD patients than in patients with cancer.These findings are in line with previous reports that COPD patients suffer from a high burden of symptoms, especially breathlessness, at the end of life [9]. We have expanded previous findings with data on prescription of palliative medications during the last week in advanced COPD specifically and comparing it with a cancer cohort that usually receives higher-quality EOL care.…”

supporting

confidence: 88%

End-of-life care in oxygen-dependent COPD and cancer: a national population-based study

et al. 2015

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Chronic obstructive pulmonary disease (COPD) is the third leading cause of mortality worldwide [1], and is associated with high morbidity and poor symptom control for long periods of time as the disease progresses [2]. At the end of life, COPD patients have a symptom burden comparable to, and often greater than, that associated with cancer [3]. Comparison between COPD and cancer is relevant because cancer patients have well-established palliative care programmes. Despite having extensive and similar end-of-life (EOL) needs to cancer patients, studies report unrelieved symptoms and low referral rates to palliative care in advanced COPD patients [4].Knowledge about symptoms and symptomatic treatments near death are vital to identify healthcare inequalities, and to identify ways to improve EOL care in advanced COPD. The aim of this study was to estimate the prevalence of symptoms and their management in the last week of life in people with oxygen-dependent COPD or cancer.This was a nationwide, registry-based cohort study including all patients starting long-term oxygen therapy (LTOT) for physician-diagnosed COPD in the national Swedevox register who died between January 1, 2011 and October 14, 2013. The Swedevox register prospectively includes patients starting LTOT in Sweden with a population-based coverage of ∼85% [5]. Details of the register are described elsewhere [6].Data on people with oxygen-dependent COPD were cross-linked using each patient's unique Swedish identification number with data in the Swedish Register of Palliative Care (SRPC). Patients in SRPC who died from cancer during the same time period were included as the comparator group. SRPC is a national quality register of the care of patients during their last week of life regardless of place of care or diagnosis, with a coverage of 87.4% of all cancer deaths nationwide in 2013 [7].The SRPC collects data through an end-of-life questionnaire (ELQ) completed retrospectively by the responsible nurse and/or physician within a week of the patient's death, based on the patient record and experience of the care that may not have been documented, preferably after a team discussion, therefore including the experience of all team members. The ELQ includes data on the presence of breathlessness, pain, death rattle, nausea, anxiety and confusion, and prevalence of prescribing "as-needed" medications for pain, nausea, anxiety and death rattle during the last 7 days of life. A previous study supported the validity of the ELQ [8].Prevalence was considered for each symptom in the questions of the ELQ: "Were any of the following symptoms prevalent at some time during the last week of life?" (yes or no). For any reported symptom, the level of symptom relief was graded as relieved, partially relieved or unrelieved. Prevalence of as-needed medication prescriptions was analysed among symptomatic patients for each identified symptom according to the question "Was medication prescribed for use 'as needed' in the form of injections before death for pain, death rattle, nau...

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“…Although patients in palliative care might have different diagnoses, they are often facing similar problems associated with life-threatening illness , Worldwide Palliative Care Alliance 2014. Therefore, palliative care should be based on patients' needs instead of diagnoses (Moens, Higginson et al 2014). Furthermore, palliative care has been shown to be an effective approach to reduce symptoms (Gomes 2014, Ornstein, Wajnberg et al 2013 and improve quality of life, regardless of how it is organised (Aoun, O'Connor et al 2012).…”

Section: Background Palliative Carementioning

confidence: 99%

“…Today, there is a lack of consensus regarding the definition of constipation in palliative care, and this also plays a part in the reported variance of prevalence in studies (Goodman, Low et al 2005, Moens, Higginson et al 2014, Potter, Hami et al 2003. Several different criteria, such as frequency of bowel movements (with and without concurrent opioid use), opioid or laxative use, self-reports and health professional's opinions, have been used in studies to define constipation (Clark, Currow 2013).…”

Section: Definition Of Constipationmentioning

confidence: 99%

Constipation in palliative care : Prevalence, definitions, symptom distress and risk-factors

Erichsén¹

2015

Linköping Studies in Health Sciences. Thesis

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Background and aims: Constipation for patients in palliative care is common and described with variations in prevalence. Side -effects from opioid- treatment, is considered to be one of the main factors leading to constipation. The overall aim of the thesis was to study constipation among patients admitted to specialized palliative care- settings in Sweden. The specific aims of the thesis were 1) To describe and explore the prevalence, definition and symptom distress of constipation by applying different definitions of constipation, in patients admitted to specialized palliative care settings in Sweden. 2) To identify factors related to constipation in patients in specialized palliative care and comparing these factors for patients with different types of constipation to patients without constipation. Methods: A literature- search were conducted where prevalence of- and factors related to constipation was explored and included in a questionnaire, developed for this thesis. Data was collected in a cross- sectional design with a response rate of 50% and analysed with logistic regression. Results: A total of 485 patients from 38 specialized palliative care- units in Sweden participated. Prevalence of constipation for patients in specialized palliative care varied between 7- 43 % depending on definition used. Two different constipation- groups were identified: Medical constipation- group 23% (MCG) and Perceived constipation- group 35% (PCG). Three sub- groups was also identified: patients with i) only ≤ 3 defecations/week, 7%, ii) only perception of being constipated, 19%, and iii) patients with both ≤ 3 defecations/ week and perception of being constipated,16%. Several factors were found to be related to constipation as hospitalisation, absence of laxative- treatment, haemorrhoids, poor appetite, hard stool form and opioids. Conclusions: Prevalence of constipation may differ depending on definitions used. Distress from constipation and other factors related to constipation, than opioids, needs to be incorporated into the clinical constipation- assessment. Validated constipation assessment tool needs to be developed.

The series name Linköping University, Studies in Health Sciences, Thesis in the Licentiate thesis is incorrect. The correct name is Linköping Studies in Health Sciences. Thesis.

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Are There Differences in the Prevalence of Palliative Care-Related Problems in People Living With Advanced Cancer and Eight Non-Cancer Conditions? A Systematic Review

Cited by 356 publications

References 144 publications

Impact of the Macmillan specialist Care at Home service: a mixed methods evaluation across six sites

Impact of the Macmillan specialist Care at Home service: a mixed methods evaluation across six sites

End-of-life care in oxygen-dependent COPD and cancer: a national population-based study

Constipation in palliative care : Prevalence, definitions, symptom distress and risk-factors

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