scholarly journals Longitudinal Pediatric Palliative Care: Quality of Life & Spiritual Struggle (FACE): Design and methods

2012 ◽  
Vol 33 (5) ◽  
pp. 1033-1043 ◽  
Author(s):  
Ronald H. Dallas ◽  
Megan L. Wilkins ◽  
Jichuan Wang ◽  
Ana Garcia ◽  
Maureen E. Lyon
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Care Quality ◽  
Pediatric Palliative Care ◽  
Spiritual Struggle ◽  
Design And Methods

Does a Patient-Held Quality-of-Life Diary Benefit Patients With Inoperable Lung Cancer?

2009 ◽  
Vol 27 (1) ◽  
pp. 70-77 ◽  
Author(s):  
Moyra E. Mills ◽  
Liam J. Murray ◽  
Brian T. Johnston ◽  
Chris Cardwell ◽  
Michael Donnelly
Keyword(s):  
Quality Of Life ◽  
Lung Cancer ◽  
Palliative Care ◽  
Health Care Professionals ◽  
Standard Care ◽  
Care Quality ◽  
Care Group ◽  
Consistent Difference ◽  
Life Questionnaire

Purpose To examine the effect of weekly completion of a patient-held quality-of-life (QOL) diary in routine oncology practice for palliative care patients. Patients and Methods In a pragmatic randomized controlled trial, 115 patients with inoperable lung cancer were randomly assigned to receive either standard care or a structured QOL diary (European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire C30 and the related lung cancer module LC13) that they completed at home each week for 16 weeks. Patients were encouraged to share the QOL information with health professionals involved in their care. Changes in QOL over time (measured by the Functional Assessment of Cancer Therapy–Lung questionnaire and the Palliative Care Quality of Life Index), discussion of patient problems, and satisfaction with communication and general care were assessed at baseline and at 2 and 4 months after baseline. Results Analysis of QOL indicated a small but consistent difference between patients in the diary group and the standard care group. The diary group had a poorer QOL in many domains. Two different QOL summary scores (total and overall QOL) indicated a statistically significant between-group difference. No effects were found in relation to satisfaction with care, communication, or the discussion of patient problems. Conclusion The regular completion of a QOL questionnaire without appropriate feedback to health care professionals and without the provision of appropriate support may have a negative impact on inoperable lung cancer patients. Further research should focus on identifying features such as feedback loops that are required for the successful and meaningful use of QOL questionnaires in routine patient care.

Assessment tools for palliative care.

2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 66-66
Author(s):  
Sarina Isenberg ◽  
Rebecca Aslakson ◽  
Sydney Morss Dy ◽  
Renee Wilson ◽  
Julie Waldfogel ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Clinical Practice ◽  
Quality Indicators ◽  
Systematic Reviews ◽  
Grey Literature ◽  
Care Quality ◽  
Assessment Tools ◽  
Patient Reported

66 Background: Recent reviews have not comprehensively addressed palliative care (PC) assessment tools. This project summarizes the extent of evidence about PC assessment tools for patients and families, and how tools have been used for clinical care, quality indicators, and evaluation of interventions. Methods: We searched MEDLINE, CINAHL, and Cochrane Database of Systematic Reviews for systematic reviews of assessment tools for PC, from January 2007 to March 2016. We searched the grey literature for domains without systematic reviews, and for domains with systematic reviews > three years old. Paired investigators independently screened search results and grey literature to determine eligibility, and assessed risk of bias of systematic reviews. The team selected the most recent and highest-quality systematic reviews for each domain. One investigator abstracted information, and a second investigator checked the information. Results: Using the National Consensus Project Palliative Care Guidelines domains, we included nine systematic reviews with 167 tools, and six tools from grey literature. Most tools were in physical, psychological, psychiatric, and social aspects of care, care at the end of life, and tools that cross domains (quality of life and caregiver-reported experience). Only two tools directly addressed spiritual aspects and none addressed cultural or patient-reported experience. Internal consistency reliability was evaluated for almost all tools; most reported construct validity; and few reported responsiveness (sensitivity to change). Few studies evaluated the use of assessment tools in quality indicators or clinical practice. A systematic review of 38 PC interventions and the assessment tools used found that at least 25 interventions included physical, psychosocial and psychiatric, and quality of life tools, but the tools varied extensively, and only nine included patient experience tools. Conclusions: Although assessment tools exist in many PC domains, tools are needed to assess spiritual and cultural aspects of care, and patient-reported experience. Research is needed concerning: tools in clinical practice and quality of care; comparison of existing tools; and evaluation and dissemination tools with evidence of responsiveness.

scholarly journals The Role of Physiotherapy in Pediatric Palliative Care: A Systematic Review

Children ◽  
2021 ◽  
Vol 8 (11) ◽  
pp. 1043
Author(s):  
Silvia Ortiz-Campoy ◽  
Cristina Lirio-Romero ◽  
Helena Romay-Barrero ◽  
David Martín-Caro Álvarez ◽  
Purificación López-Muñoz ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Palliative Care ◽  
Scientific Evidence ◽  
Pediatric Palliative Care ◽  
Cochrane Library ◽  
Her Family ◽  
Life Threatening ◽  
Respiratory Physiotherapy

Pediatric palliative care (PPC) is a set of actions aimed at children who suffer from a severe or life-threatening disease to alleviate the symptoms of the disease and improve the quality of life of both the child and his/her family. One of the tools used to control symptoms is physiotherapy; however, its application in the child population has not been thoroughly studied. The main objective of this study was to gather, analyze, and critically evaluate the available scientific evidence on physiotherapy in children who require palliative care through a systematic review of the studies published in the last 10 years in the following databases: PubMed, Cochrane Library, PEDro, CINAHL, and Scopus. Of a total of 622 studies, the inclusion criteria were only met by seven articles, which were focused on the relationship between physiotherapy and PPC. This study analyzed: (1) the main pathologies treated, with a predominance of cerebral palsy and cancer; (2) the interventions applied, such as respiratory physiotherapy, neurological physiotherapy, therapeutic massage, and virtual reality; (3) the effects achieved in the child and his/her family, highlighting the control of symptoms and the improvement of the quality of life; and (4) the knowledge of the physiotherapists on PPC, observing that most of the professionals had not received training in this scope. The findings of this review indicate a lack of an adequate evidence foundation for physiotherapy in PPC.

Proxy-Reported Quality of Life and Family Impact for Children Followed Longitudinally by a Pediatric Palliative Care Team

2018 ◽  
Vol 21 (2) ◽  
pp. 241-244 ◽  
Author(s):  
Meaghann Weaver ◽  
Christopher Wichman ◽  
Cheryl Darnall ◽  
Sue Bace ◽  
Catherine Vail ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Palliative Care Team ◽  
Care Team ◽  
Pediatric Palliative Care ◽  
Family Impact

scholarly journals Measuring quality of life in pediatric palliative care: challenges and potential solutions

2009 ◽  
Vol 24 (2) ◽  
pp. 175-182 ◽  
Author(s):  
I-Chan Huang ◽  
Elizabeth A Shenkman ◽  
Vanessa L Madden ◽  
Susan Vadaparampil ◽  
Gwendolyn Quinn ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Pediatric Palliative Care

Designing Research With Hospice and Palliative Care Populations

2011 ◽  
Vol 29 (5) ◽  
pp. 335-345 ◽  
Author(s):  
Ashley M. Wohleber ◽  
Daniel S. McKitrick ◽  
Shawn E. Davis
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Quality Of Care ◽  
Informed Consent ◽  
End Of Life ◽  
English Language ◽  
Care Quality ◽  
Design Studies ◽  
Hospice And Palliative Care

Research in palliative care and hospice populations is important for improving quality of care, quality of life, and provider understanding of individuals at the end of life. However, this research involves many potential challenges. This review seeks to inform and assist researchers targeting to design studies targeting hospice and palliative care patients by presenting a thorough review of the published literature. This review covers English-language articles published from 1990 through 2009 listed in the PsycInfo, Medline, or CINAHL research databases under relevant keywords. Articles on pediatric hospice were not included. Issues discussed include study design, informed consent, and recruitment for participants. Synthesized recommendations for researchers in these populations are presented.

Health Status and Health-Related Quality of Life in a Pediatric Palliative Care Program

2012 ◽  
Vol 15 (7) ◽  
pp. 790-797 ◽  
Author(s):  
Caprice Knapp ◽  
Vanessa Madden ◽  
Dennis Revicki ◽  
David Feeny ◽  
Hua Wang ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Health Status ◽  
Care Program ◽  
Pediatric Palliative Care ◽  
Palliative Care Program ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related
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