CAPABLE: Comparing the Patient Generated Index (quality of life tool) in patients and caregivers to standard measures in the high-grade brain tumour population

2020 ◽  
Author(s):  
Lillie Pakzad-Shahabi ◽  
Matt Williams
Keyword(s):  
Quality Of Life ◽  
Brain Tumour ◽  
High Grade ◽  
Patient Generated Index ◽  
Life Tool

scholarly journals Palliative Care in Patients With High-Grade Gliomas in the Neurological Intensive Care Unit

2019 ◽  
Vol 10 (3) ◽  
pp. 163-167
Author(s):  
Jon Rosenberg ◽  
Allie Massaro ◽  
James Siegler ◽  
Stacey Sloate ◽  
Matthew Mendlik ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Intensive Care Unit ◽  
Palliative Care ◽  
High Grade ◽  
Neurological Intensive Care Unit ◽  
Code Status ◽  
Neurological Intensive Care ◽  
Palliative Care Consultation ◽  
Care Consultation

Background: Palliative care improves quality of life in patients with malignancy; however, it may be underutilized in patients with high-grade gliomas (HGGs). We examined the practices regarding palliative care consultation (PCC) in treating patients with HGGs in the neurological intensive care unit (NICU) of an academic medical center. Methods: We conducted a retrospective cohort study of patients admitted to the NICU from 2011 to 2016 with a previously confirmed histopathological diagnosis of HGG. The primary outcome was the incidence of an inpatient PCC. We also evaluated the impact of PCC on patient care by examining its association with prespecified secondary outcomes of code status amendment to do not resuscitate (DNR), discharge disposition, 30-day mortality, and 30-day readmission rate, length of stay, and place of death. Results: Ninety (36% female) patients with HGGs were identified. Palliative care consultation was obtained in 16 (18%) patients. Palliative care consultation was associated with a greater odds of code status amendment to DNR (odds ratio [OR]: 18.15, 95% confidence interval [CI]: 5.01-65.73), which remained significant after adjustment for confounders (OR: 27.20, 95% CI: 5.49-134.84), a greater odds of discharge to hospice (OR: 24.93, 95% CI: 6.48-95.88), and 30-day mortality (OR: 6.40, 95% CI: 1.96-20.94). Conclusion: In this retrospective study of patients with HGGs admitted to a university-based NICU, PCC was seen in a minority of the sample. Palliative care consultation was associated with code status change to DNR and hospice utilization. Further study is required to determine whether these findings are generalizable and whether interventions that increase PCC utilization are associated with improved quality of life and resource allocation for patients with HGGs.

Parental report of cognitive difficulties, quality of life and rehabilitation in children with epilepsy or treated for brain tumour

2008 ◽  
Vol 11 (4) ◽  
pp. 268-275 ◽  
Author(s):  
Carmen Soria ◽  
Delphine Callu ◽  
Delphine Viguier ◽  
Sandra El Sabbagh ◽  
Christine Bulteau ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Brain Tumour ◽  
Parental Report ◽  
Cognitive Difficulties

scholarly journals The current trend of administering a patient-generated index in the oncological setting: a systematic review

2014 ◽  
Author(s):  
Jessica A. Tang ◽  
Taemin Oh ◽  
Justin K. Scheer ◽  
Andrew T. Parsa
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Current Trend ◽  
Free Form ◽  
Patient Generated Index ◽  
Novel Approach ◽  
Patient Reported ◽  
Assess Quality ◽  
In The Beginning

The patient-generated index (PGI) is a more novel approach to evaluating health-related quality of life (HRQOL) that allows patients to formulate their own responses in an open-ended format in order to measure HRQOL based on each patient’s own stated goals and expectations. To date the use of PGI in the setting of patients diagnosed with cancer remains relatively less common compared to other health conditions. This systematic review primarily aims to identify current literature in which PGI has been used as a tool to assess quality of life in cancer patients. A systematic review using the MEDLINE database from January 1990 to July 2013 was performed with the following search terms to identify the implementation of PGI in oncology settings: (PGI OR patient generated index OR patient-generated OR patient-reported OR patient generated OR patient reported) AND (cancer OR oncology OR tumor OR neoplasm OR malignancy). Of the 2167 papers initially identified, 10 papers evaluated quality of life in oncology patients by collecting free-form responses from the patient, 4 of which actually used PGI. An overarching theme observed in these studies highlighted the concerns mentioned by patients that were not targeted or detected by standardized quality of life measures. While implementing the PGI may require slightly more investment of resources in the beginning, the potential implications of allowing patients to characterize their quality of life on their own terms are tremendous.

QOLP-30. LONG-TERM UNMET SUPPORTIVE CARE NEEDS OF TYA CHILDHOOD BRAIN TUMOUR SURVIVORS AND THEIR CAREGIVERS: A CROSS-SECTIONAL SURVEY

2021 ◽  
Vol 23 (Supplement_6) ◽  
pp. vi189-vi189
Author(s):  
Emma Nicklin ◽  
Galina Velikova ◽  
Adam Glaser ◽  
Michelle Kwok-WIlliam ◽  
Miguel Debono ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Supportive Care ◽  
Brain Tumour ◽  
Unmet Needs ◽  
Supportive Care Needs ◽  
Care Needs ◽  
Long Term Follow Up

Abstract INTRODUCTION The supportive care needs of long-term childhood brain tumour survivors, now teenagers and young adults (TYAs), and their caregivers are largely unknown. TYAs are a unique patient cohort with specific challenges and vulnerabilities differing from children or older adults. We aimed to describe their supportive care needs and explore associations between needs and quality of life (QoL).This is the first study to collect quantitative data about needs in this survivorship group. METHODS Participants were recruited from long-term follow-up clinics (in three National Health Service Trusts in England) and online. Participants included childhood brain tumour survivors, ≥ 5 years from diagnosis, currently aged 13-30, and their primary caregivers. Survivors completed the Supportive Care Needs Survey (SCNS) Short-Form and Paediatric Functional Assessment of Cancer Therapy – Brain (Peds-FACT-Br). While caregivers completed the SCNS-Partners and Caregivers (SCNS-P&C) and the Caregiver Quality of Life Index–Cancer (CQOLC). RESULTS In total, 112 individuals (69 survivors/43 caregivers) participated. Survivors reported on average 9.4 (±8.5) unmet needs. Needs were greatest in the psychological domain, with anxiety (60.3%), uncertainty about the future (50.7%) and feeling down and depressed (48.5%) most commonly reported. Caregivers reported on average 12.4 (±12.3) unmet needs. Again, the greatest number of unmet needs were observed in the psychological domain. Many caregivers also reported information needs around financial support/government benefits (42.9%) and possible survivor fertility problems (42.9%). Multivariable linear regression analysis showed that female survivors, unemployed survivors, survivors further away from diagnosis, and single caregivers were more likely to report unmet needs. More unmet needs were significantly associated with poorer QoL in survivors and caregivers. CONCLUSION This research provides leads to improving supportive care and long-term follow-up services. Psychological support appears to be the biggest gap in care. Understanding unmet needs and recognising what services are required is critical to improving quality of long-term survival.

scholarly journals The impact of visual impairment on Health-Related Quality of Life (HRQoL) scores in brain tumour patients

2018 ◽  
Vol 20 (suppl_1) ◽  
pp. i6-i6 ◽  
Author(s):  
Sana Sharrack ◽  
Alexis J Joannides ◽  
William Sage ◽  
Stephen Price
Keyword(s):  
Quality Of Life ◽  
Visual Impairment ◽  
Brain Tumour ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact
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