Information provision as evaluated by people with cancer and bereaved relatives: A cross-sectional survey of 34 specialist palliative care teams

Abstract Background Specialist palliative care teams (SPCTs) in hospitals improve quality of life and satisfaction with care for patients with advanced disease. However, referrals to SPCTs are often limited. To identify areas for improvement of SPCTs’ service penetration, we explored the characteristics and level of integration of palliative care programmes and SPCTs in Dutch hospitals and we assessed the relation between these characteristics and specialist palliative care referral rates. Methods We performed a secondary analysis of a national cross-sectional survey conducted among hospitals in the Netherlands from March through May 2018. For this survey, a previously developed online questionnaire, containing 6 consensus-based integration indicators, was sent to palliative care programme leaders in all 78 hospitals. For referral rate we calculated the number of annual inpatient referrals to the SPCT as a percentage of the number of total annual hospital admissions. Referral rate was dichotomized into high (≥ third quartile) and low (< third quartile). Characteristics of SPCTs with high and low referral rate were compared using univariate analyses. P-values < 0.05 were considered significant. Results In total, 63 hospitals (81%) participated in the survey, of which 62 had an operational SPCT. The palliative care programmes of these hospitals consisted of inpatient consultation services (94%), interdisciplinary staffing (61%), outpatient clinics (45%), dedicated acute care beds (21%) and community-based palliative care (27%). The median referral rate was 0.56% (IQR 0.23–1.0%), ranging from 0 to 3.7%. Comparing SPCTs with high referral rate (≥1%, n = 17) and low referral rate (< 1%, n = 45) showed significant differences for SPCTs’ years of existence, staffing, their level of education, participation in other departments’ team meetings, provision of education and conducting research. With regard to integration, significant differences were found for the presence of outpatient clinics and timing of referrals. Conclusion In the Netherlands, palliative care programmes and specialist palliative care teams in hospitals vary in their level of integration and development, with more mature teams showing higher referral rates. Appropriate staffing, dedicated outpatient clinics, education and research appear means to improve service penetration and timing of referral for patients with advanced diseases.

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A Cross-Sectional Survey of the Activity of Palliative Care Teams in Portugal

American Journal of Hospice and Palliative Medicine® ◽

10.1177/1049909112469718 ◽

2012 ◽

Vol 30 (7) ◽

pp. 648-651 ◽

Cited By ~ 3

Author(s):

Ferraz Gonçalves ◽

Ana Almeida ◽

Catarina Antunes ◽

Alice Cardoso ◽

Margarida Carvalho ◽

...

Keyword(s):

Palliative Care ◽

Cross Sectional Survey ◽

Cross Sectional ◽

Palliative Care Teams

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Evolution of requests to hasten death among patients managed by palliative care teams in France: A multicentre cross-sectional survey (DemandE)

European Journal of Cancer ◽

10.1016/j.ejca.2011.09.020 ◽

2012 ◽

Vol 48 (3) ◽

pp. 368-376 ◽

Cited By ~ 21

Author(s):

Edouard Ferrand ◽

Jean-François Dreyfus ◽

Mélanie Chastrusse ◽

Françoise Ellien ◽

François Lemaire ◽

...

Keyword(s):

Palliative Care ◽

Cross Sectional Survey ◽

Cross Sectional ◽

Palliative Care Teams

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A national cross-sectional survey of constipation in patients attending cancer centres in Ireland

HRB Open Research ◽

10.12688/hrbopenres.13315.1 ◽

2021 ◽

Vol 4 ◽

pp. 113

Author(s):

Karen Ryan ◽

Bridget M. Johnston ◽

Clare McAleer ◽

Laserina O'Connor ◽

Philip Larkin

Keyword(s):

Palliative Care ◽

Clinical Problem ◽

Assessment Scale ◽

Care Practice ◽

Specialist Palliative Care ◽

Opioid Use ◽

Cross Sectional Survey ◽

Cross Sectional ◽

Laxative Use ◽

Scale Scores

Background: The prevalence of constipation in patients with cancer is estimated at 50-90%. It is often associated with pain, anorexia, nausea and vomiting and impacts negatively on quality of life. Despite its common occurrence, it is often poorly recognised and treated by healthcare professionals. Methods: A national cross-sectional survey was conducted in Ireland to describe constipation prevalence and severity in patients attending cancer centres and to evaluate management efficacy. In-patients or patients attending day oncology wards in any of the country’s eight designated cancer centres were eligible to participate. Participants were shown the Bristol Stool Chart and answered questions regarding stool appearance and sensation of incomplete defecation; they completed the Constipation Assessment Scale. Data on pain character and intensity, opioid use, and prescribed and over-the-counter laxative use were collected. Data were summarised using descriptive statistics. Significance of variations for continuous data were determined using t-tests. Conditional ordered logistic regression was undertaken to determine factors associated with constipation. Results: The dataset comprised 491 patients. 24.8% had been reviewed by specialist palliative care; 14.5% by the anaesthetic pain team. In total, 42.2% of respondents were taking step 2 or step 3 opioids. Constipation prevalence was 67.6%; 19.4% of patients had Constipation Assessment Scale scores indicating severe constipation. A total of 46% of the respondents were not taking any laxatives. Of those who were taking laxatives, 54.8% reported constipation symptoms. While opioid use was strongly associated with participants reporting higher scores, this association was not seen in those patients receiving specialist palliative care. Conclusions: Constipation remains a clinical problem in Irish cancer centres. Despite increased opioid use, patients receiving specialist palliative care were more likely to take laxatives and reported less constipation. Specialist palliative care practice should be studied in order to identify what are the transferable ‘ingredients’ of effective constipation management.

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Uncertainty about cellulitis and unmet patient information needs: a mixed methods study

British Journal of General Practice ◽

10.3399/bjgp18x697349 ◽

2018 ◽

Vol 68 (suppl 1) ◽

pp. bjgp18X697349

Author(s):

Anna Lalonde ◽

Emma Teasdale ◽

Ingrid Muller ◽

Joanne Chalmers ◽

Peter Smart ◽

...

Keyword(s):

Mixed Methods ◽

Information Needs ◽

Qualitative Data ◽

Information Provision ◽

Mixed Methods Study ◽

Cross Sectional Survey ◽

Cross Sectional ◽

Face To Face ◽

Patient Information Needs ◽

History Of

BackgroundCellulitis is a common painful infection of the skin and underlying tissues that recurs in approximately a third of cases. Patients’ ability to recover from cellulitis or prevent recurrence is likely to be influenced by their understanding of the condition.AimTo explore patients’ perceptions of cellulitis and their information needs.MethodMixed methods study comprising semi-structured, face-to-face interviews and cross-sectional survey, recruiting through primary care, secondary care and advertising. Adults aged 18 or over with a history of cellulitis (first or recurrent) were invited to complete a survey, take part in an interview or both. Qualitative data was analysed thematically.ResultsThirty interviews were conducted between August 2016 and July 2017. Qualitative data revealed low prior awareness of cellulitis, uncertainty around diagnosis, concern/surprise at the severity of cellulitis, and perceived insufficient information provision. People were surprised they had never heard of the condition and that they had not received advice or leaflets giving self-care information. Some sought information from the internet and found this bewildering. Two hundred and forty surveys were completed (response rate 17%). These showed that, while most people received information on the treatment of cellulitis (60.0%, n = 144), they reported receiving no information about causes (60.8%, n = 146) or prevention of recurrence (73.3%, n = 176).ConclusionThere is a need for provision of basic information for people with cellulitis, particularly being informed of the name of their condition, how to manage acute episodes, and how to reduce risk of recurrence.

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Cannabis and End-of-Life Care: A Snapshot of Hospice Planning and Experiences Among Illinois Medical Cannabis Patients With A Terminal Diagnosis

American Journal of Hospice and Palliative Medicine® ◽

10.1177/10499091211018655 ◽

2021 ◽

pp. 104990912110186

Author(s):

James Alton Croker ◽

Julie Bobitt ◽

Sara Sanders ◽

Kanika Arora ◽

Keith Mueller ◽

...

Keyword(s):

Palliative Care ◽

End Of Life ◽

Fast Track ◽

Hospice Care ◽

Cannabis Use ◽

Care Plan ◽

Medical Cannabis ◽

Cross Sectional Survey ◽

Cross Sectional ◽

Eol Care

Introduction: Between 2013 and 2019, Illinois limited cannabis access to certified patients enrolled in the Illinois Medical Cannabis Program (IMCP). In 2016, the state instituted a fast-track pathway for terminal patients. The benefits of medicinal cannabis (MC) have clear implications for patients near end-of-life (EOL). However, little is known about how terminal patients engage medical cannabis relative to supportive care. Methods: Anonymous cross-sectional survey data were collected from 342 terminal patients who were already enrolled in ( n = 19) or planning to enroll ( n = 323) in hospice for EOL care. Logistic regression models compare patients in the sample on hospice planning vs. hospice enrollment, use of palliative care vs. hospice care, and use standard care vs non-hospice palliative care. Results: In our sample, cancer patients ( OR = 0.21 (0.11), p < .01), and those who used the fast-track application into the IMCP ( OR = 0.11 (0.06), p < .001) were less likely to be enrolled in hospice. Compared to patients in palliative care, hospice patients were less likely to report cancer as their qualifying condition ( OR = 0.16 (0.11), p < .01), or entered the IMCP via the fast-track ( OR = 0.23 (0.15), p < .05). Discussion: Given low hospice enrollment in a fairly large EOL sample, cannabis use may operate as an alternative to supportive forms of care like hospice and palliation. Clinicians should initiate conversations about cannabis use with their patients while also engaging EOL Care planning discussions as an essential part of the general care plan.

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Assisting People With Their Living, Not Their Dying: Health Professionals’ Perspectives of Palliative Care and Opioids in ILD

American Journal of Hospice and Palliative Medicine® ◽

10.1177/10499091211018664 ◽

2021 ◽

pp. 104990912110186

Author(s):

Lauren Russo ◽

Karen Willis ◽

Natasha Smallwood

Keyword(s):

Quality Of Life ◽

Health Care ◽

Palliative Care ◽

Health Care System ◽

Therapeutic Relationships ◽

Specialist Palliative Care ◽

Cross Sectional ◽

Symptom Palliation ◽

Care System

Objectives: Interstitial lung disease (ILD) is a debilitating and life-limiting condition, requiring multi-disciplinary care. While guidelines recommend early specialist palliative care referral to improve symptoms and quality of life, few patients access such care towards the end-of-life. This study aimed to explore clinicians’ perspectives regarding specialist palliative care and opioids to understand barriers to optimal care and guide clinical practice improvement initiatives. Methods: A cross-sectional, exploratory, qualitative study was undertaken with Australian respiratory clinicians caring for people with ILD (n = 17). In-depth, semi-structured interviews were audio-recorded, transcribed verbatim and coded. Thematic analysis was undertaken to extrapolate recurring ideas from the data. Results: Four themes were identified: 1) understanding how to improve patient care and support, 2) the need to dispel stigmatized beliefs and misconceptions, 3) the importance of trusted relationships and good communication and 4) the challenges of navigating the health-care system. Participants discussed the need to implement early specialist palliative care and symptom palliation to alleviate symptoms, provide emotional support and augment quality of life. Participants described challenges accessing palliative care and opioids due to stigmatized beliefs amongst patients and clinicians and difficulties navigating the health-care system. Trusted therapeutic relationships with patients and strong inter-disciplinary partnerships with collaborative education and communication were perceived to improve patients’ access to symptom palliation. Conclusion: Specialist palliative care and opioids were believed to improve patients’ quality of life, however, many barriers can make accessing such care challenging. To address these issues, multi-disciplinary collaboration, high-quality communication and trusted therapeutic relationships are crucial throughout the ILD illness journey.

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