Regional paediatric palliative care network model improves the quality of life of children on long-term ventilation at home

Cardiorespiratory symptoms are important in paediatric palliative care, affecting those with cancer as well as children with non-oncological life-limiting illnesses. Breathing is not only a vital function; it also often acts as a barometer of a person’s overall comfort. Breathlessness, often the end point of both cardiac and respiratory compromise, is invariably listed among the most distressing of symptoms. A multimodal approach to treating discomfort related to cardiorespiratory compromise, is essential, allowing for the physical, psychological, social, and spiritual dimensions of the symptoms. The range of possible treatments available continues to expand, encompassing everything from simple non-pharmacological measures to long-term mechanical support of respiratory or cardiac function. This chapter will outline a holistic approach to managing cardiorespiratory symptoms in the child, providing excellent palliative care, where improving quality of life is a primary focus.

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Palliative Care

Advances in Medical Technologies and Clinical Practice - Modern Concepts and Practices in Cardiothoracic Critical Care ◽

10.4018/978-1-4666-8603-8.ch005 ◽

2015 ◽

pp. 105-123

Author(s):

May Hua

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Intensive Care ◽

Critical Illness ◽

Serious Illness ◽

Surgical Units ◽

Potential Benefits

Palliative care is a specialty of medicine that focuses on improving quality of life for patients with serious illness and their families. As the limitations of intensive care and the long-term sequelae of critical illness continue to be delimited, the role of palliative care for patients that are unable to achieve their original goals of care, as well as for survivors of critical illness, is changing and expanding. The purpose of this chapter is to introduce readers to the specialty of palliative care and its potential benefits for critically ill patients, and to present some of the issues related to the delivery of palliative care in surgical units.

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Does education at home by a Respiratory Nurse Specialist (RNS) of patients and carers of those receiving Long Term Oxygen Therapy (LTOT) improve compliance and quality of life

http://isrctn.org/> ◽

10.1186/isrctn32469867 ◽

2012 ◽

Author(s):

Angela Crewes

Keyword(s):

Quality Of Life ◽

Oxygen Therapy ◽

Nurse Specialist ◽

Improve Compliance ◽

Long Term Oxygen Therapy ◽

At Home

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Health-related quality-of-life outcome measures in paediatric palliative care: A systematic review of psychometric properties and feasibility of use

Palliative Medicine ◽

10.1177/0269216316649155 ◽

2016 ◽

Vol 30 (10) ◽

pp. 935-949 ◽

Cited By ~ 20

Author(s):

Lucy H Coombes ◽

Theresa Wiseman ◽

Grace Lucas ◽

Amrit Sangha ◽

Fliss EM Murtagh

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Psychometric Properties ◽

Outcome Measures ◽

Health Related Quality ◽

Paediatric Palliative Care ◽

Quality Of Life Measures ◽

Related Quality ◽

Health Related

Background: The number of children worldwide requiring palliative care services is increasing due to advances in medical care and technology. The use of outcome measures is important to improve the quality and effectiveness of care. Aim: To systematically identify health-related quality-of-life outcome measures that could be used in paediatric palliative care and examine their feasibility of use and psychometric properties. Design: A systematic literature review and analysis of psychometric properties. Data sources: PsychInfo, Medline and EMBASE were searched from 1 January 1990 to 10 December 2014. Hand searches of the reference list of included studies and relevant reviews were also performed. Results: From 3460 articles, 125 papers were selected for full-text assessment. A total of 41 articles met the eligibility criteria and examined the psychometric properties of 22 health-related quality-of-life measures. Evidence was limited as at least half of the information on psychometric properties per instrument was missing. Measurement error was not analysed in any of the included articles and responsiveness was only analysed in one study. The methodological quality of included studies varied greatly. Conclusion: There is currently no ‘ideal’ outcome assessment measure for use in paediatric palliative care. The domains of generic health-related quality-of-life measures are not relevant to all children receiving palliative care and some domains within disease-specific measures are only relevant for that specific population. Potential solutions include adapting an existing measure or developing more individualized patient-centred outcome and experience measures. Either way, it is important to continue work on outcome measurement in this field.

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Quality of life of patients on long-term total parenteral nutrition at home

Journal of General Internal Medicine ◽

10.1007/bf02596321 ◽

1986 ◽

Vol 1 (1) ◽

pp. 26-33 ◽

Cited By ~ 62

Author(s):

Allan S. Detsky ◽

John R. McLaughlin ◽

Howard B. Abrams ◽

Kristan A. L’Abbe ◽

Jocelyn Whitwell ◽

...

Keyword(s):

Quality Of Life ◽

Parenteral Nutrition ◽

Total Parenteral Nutrition ◽

At Home

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Describing the psychosocial profile and unmet support needs of parents caring for a child with a life-limiting condition: A cross-sectional study of caregiver-reported outcomes

Palliative Medicine ◽

10.1177/0269216319892825 ◽

2020 ◽

Vol 34 (3) ◽

pp. 358-366 ◽

Cited By ~ 3

Author(s):

Anna Collins ◽

Jodie Burchell ◽

Cheryl Remedios ◽

Kristina Thomas

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Psychological Distress ◽

Unmet Needs ◽

Support Needs ◽

Cross Sectional ◽

Paediatric Palliative Care ◽

Practical Support ◽

Limiting Condition

Background: There is a lack of studies examining the prevalence and severity of psychosocial distress in parents caring for a child with life-limiting condition. More research is also needed to better understand the experience, support needs and quality-of-life of this population. Aim: To describe the experience and support needs of caring for children with life-limiting conditions and examine the level of distress and quality-of-life experienced by parents. Design: Cross-sectional, prospective, quantitative study guided by an advisory group. Participants completed a survey that included demographics and self-report outcome measures of unmet support needs, appraisal of caregiving, psychological distress and quality-of-life. Bivariate correlation analyses were performed to examine for associations between measures. Setting/participants: Parents currently caring for one or more children (⩽18 years) with a life-limiting condition and registered with a paediatric palliative care service (Australia). Results: In total, 143 parents (88% female) completed the questionnaire (36% RR). Compared with population norms, participants reported low quality-of-life, high carer burden and high psychological distress. Almost half (47%) of the sample met the criteria for one or more diagnoses of clinically elevated stress, anxiety or depression. There were significant associations between the psychosocial outcome variables; carer strain and depression had the strongest correlations with quality-of-life ( r = –.63, p < .001, for both). Participants also reported multiple unmet needs related to emotional and practical support. Conclusions: This study contributes to the growing body of evidence on paediatric palliative care, specifically that parents caring for a child with a life-limiting condition report high levels of distress and burden, low quality-of-life and need more emotional and practical support targeted at their unmet needs. Paediatric palliative care services should routinely assess parent mental health and provide appropriate support.

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Palliative Care Unit at Home: Impact on Quality of Life in Cancer Patients at the End of Life in a Rural Environment

American Journal of Hospice and Palliative Medicine® ◽

10.1177/10499091211038303 ◽

2021 ◽

pp. 104990912110383

Author(s):

Maria Elena Iriarte Moncho ◽

Vicente Palomar-Abril ◽

Teresa Soria-Comes

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

End Of Life ◽

Cancer Patients ◽

Hospital Admissions ◽

Cox Regression ◽

Medical Department ◽

The Impact ◽

At Home

Introduction: Advanced cancer is accompanied by a substantial burden of symptoms, and palliative care (PC) plays an essential role, especially at the end of life (EOL). In fact, a comprehensive PC through Home Palliative Care Units (HPCU) has been associated with reducing potentially aggressive care at the EOL. We aim to study the impact of HPCU on the quality of assistance of cancer patients at Alcoy Health Department. Methods: A retrospective study was conducted including patients diagnosed with terminal cancer at the Medical Department of Hospital Virgen de los Lirios who died between January 2017 and December 2018. The Multivariate Cox regression model was used to assess the impact of HPCU assistance on the quality of life indicators. Results: 388 patients were included. The median age was 71 years; 65% patients were male, and 68% presented with a 0-2 score on the ECOG scale. On the multivariate analysis, a lack of assistance by HPCU was associated with a higher risk of consulting in the emergency department (OR = 1.29, 95% CI: 1.02-1.67), of hospital admissions (OR = 4.72, 95% CI: 2.45-9.09), a higher probability of continuing active treatment (OR = 2.59, 95% CI: 1.44-4.67), and a greater probability of dying in hospital (OR = 6.52, 95% CI: 3.78-11.27). Conclusions: Patients receiving HPCU assistance have a lower number of emergency room visits and hospital admissions, and are more likely to die at home. Taken together, these results support the relevance of HPCU providing a high quality attention of cancer patients.

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