Hits and misses: A longitudinal examination of congruence between patient-reported quality-of-life concerns in advanced cancer and discussions with oncologists.

2018 ◽  
Vol 36 (34_suppl) ◽  
pp. 22-22
Author(s):  
Karen Marie De Sola-Smith ◽  
Janice Bell ◽  
Daniel J Tancredi ◽  
Richard L Kravitz ◽  
Paul Duberstein ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Supportive Care ◽  
Therapeutic Alliance ◽  
Advanced Cancer ◽  
Secondary Analysis ◽  
Care Needs ◽  
Patient Reported ◽  
The Voice ◽  
Longitudinal Examination

22 Background: Quality of life (QOL) support is critical to high quality advanced cancer care and is associated with improved patient outcomes, but most patients report unmet supportive care needs. To understand supportive care provision in routine oncology, we examined the agreement, or congruence, between patients’ self-reported symptoms and topics discussed with oncologists over an extended interval of care. Prior research suggests that patient-provider rapport and overall QOL influence discussion of patient concerns, therefore we estimated effects of two predictors of interest: therapeutic alliance between patient and oncologist, and global QOL. Methods: We conducted a secondary analysis of data collected in the VOICE study. Patients with advanced cancer (n=196) completed measures of symptoms (e.g., pain, nausea, emotional concerns) and QOL, as well as an inventory of topics discussed with oncologists over the prior 3 months. Data were collected at quarterly intervals for up to 48 months, resulting in 901 paired reports of patients’ symptoms and discussions with oncologists. We constructed congruence as a multinomial outcome with four discrete categories: congruence (symptom reported/discussed), unaddressed concern (symptom reported/not discussed), surveillance (symptom not reported/discussed), and no supportive care concern (symptom not reported/not discussed). We then estimated effects of global QOL and therapeutic alliance using multi-level logistic regression. Results: Congruence was most common for pain (49.9%), while emotional concerns were most likely to be unaddressed (50.5%). Higher therapeutic alliance with oncologists was associated with lower odds of unaddressed pain (OR 0.94, CI 0.89-1.00) and emotional concerns (OR 0.95, CI 0.91-0.98). Higher global QOL was associated with higher odds of unaddressed emotional concerns (OR 1.11, CI 1.02-1.20). Congruence outcomes were stable over time. Conclusions: Oncologists may improve congruence by strengthening therapeutic alliance, by more consistently discussing emotional concerns, and by prioritizing topics for discussion according to patients’ needs.

Impact of palliative care interventions on health-related quality of life (HRQOL): A secondary analysis of the Promoting Resilience in Stress Management (PRISM) Randomized Controlled Trial (RCT).

2018 ◽  
Vol 36 (34_suppl) ◽  
pp. 78-78
Author(s):  
Angela Steineck ◽  
Miranda Bradford ◽  
Nancy Lau ◽  
Samantha Scott ◽  
Joyce P. Yi-Frazier ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Advanced Cancer ◽  
Short Form ◽  
Controlled Trial ◽  
Secondary Analysis ◽  
Physical Symptom ◽  
Primary Analysis ◽  
Patient Reported ◽  
Related Quality

78 Background: PRISM, a novel intervention for adolescents and young adults (AYAs), seeks to enhance resilience skills via four in-person sessions. Primary analysis of the RCT in AYAs with cancer showed PRISM improved HRQOL. This secondary analysis aimed to explore changes in HRQOL domains and differences between patient groups. Methods: English-speaking AYAs (12 - 25 years) were randomized to PRISM or usual care (UC) from Jan 2015 - Oct 2016. Surveys were completed at enrollment and six months later, using the Pediatric Quality of Life Inventory (PedsQL) Generic Short Form (SF-15) and Cancer Module to assess HRQOL. We compared change scores (PRISM vs UC) by domain (PedsQL SF-15: physical, emotional, social, school; cancer: pain, nausea, procedure anxiety, treatment anxiety, worry, cognition, perceived appearance, and communication). Participants were stratified by age (12 - 17 years vs 18 - 25 years) and advanced cancer status (yes/no). Results: 74 patients (36 PRISM, 38 UC) completed 6-month assessments. 72% were 12 - 17 years old. 23% had advanced cancer at enrollment. PRISM improved patient-reported communication (UC: median [interquartile range, IQR] 0 [-17, 8]; PRISM: 8 [0, 25]). Younger patients seemed to benefit more, especially in PedsQL SF-15 school (12 - 17: UC 0 [-8, 0], PRISM 13 [0, 17]; 18 - 25: UC 0 [-33, 17], PRISM 0 [-25, 17]) and social domains (12 - 17: UC 0 [-33, 0], PRISM 0 [0, 8]; 18 - 25: UC 0 [-25, 4], PRISM -17 [-25, 8]), and cancer-specific perceived appearance (12 - 17: UC -4 [-25, 0], PRISM 8 [-8, 25]; 18-25: UC 0 [-21, 0], PRISM -8 [-25, 17]). Patients with advanced cancer seemed to benefit in cancer-specific domains nausea (no: UC 0 [-10, 15], PRISM 10 [-10, 40]; yes: UC 6 [-15, 25], PRISM 35 [25, 50]) and pain (no: UC 13 [-13, 25], PRISM 6 [-13, 25]; yes: UC -13 [-25, 0], PRISM 6 [-13, 25]). Patients without advanced cancer seemed to benefit in perceived appearance (no: UC -6 [-33, 0], PRISM 0 [-8, 17]; yes: UC 0 [-8, 17], PRISM 4 [-8, 17]). Conclusions: With PRISM, younger AYAs were better able to cope with age appropriate challenges (social, school, appearance) and AYAs with advanced cancer improved physical symptom HRQOL. Clinical trial information: NCT02340884.

Associations of Age, Gender, and Family Income with Quality of Life in Children With Advanced Cancer

2021 ◽  
pp. 104345422199232
Author(s):  
Piera C. Robson ◽  
Mary S. Dietrich ◽  
Terrah Foster Akard
Keyword(s):  
Quality Of Life ◽  
Advanced Cancer ◽  
Family Income ◽  
Hematologic Malignancy ◽  
Secondary Analysis ◽  
Quality Of Life Inventory ◽  
Younger Age ◽  
Self Reports ◽  
Life Inventory

Background: Children with cancer often experience decreased quality of life (QOL) throughout the illness trajectory. The purpose of this study was to explore the associations of demographic characteristics with QOL in children with advanced cancer. Methods: This secondary analysis was part of a larger randomized clinical trial that evaluated the efficacy of a legacy intervention for children (7–17 years) with relapsed/refractory cancer and their primary parent caregivers. Assessments included child self-reports on the Pediatric Quality of Life Inventory (PedsQL) Cancer Module. Researchers used descriptive and linear regression statistical methods. Results: Children ( n = 128) averaged 10.9 years (SD = 3.0). The majority were female ( n = 68, 53%), white ( n = 107, 84%), had a hematologic malignancy ( n = 67, 52%), with family incomes of $50,000 or less ( n = 81, 63.3%). Statistically significant positive associations of both age and income level with PedsQL scores were observed ( p < .05) but not gender ( p > .05). The strongest correlations for age were with the procedural anxiety ( beta = 0.42), treatment anxiety ( beta = 0.26), and total ( beta = 0.28) scores (all p < .01). In general, there was a positive correlation between family income levels and PedsQL scores ( p < .05). The strongest correlations for income were with nausea ( R = 0.49), appearance ( R = 0.44), pain, and treatment anxiety (both R = 0.42) (all p < .01). Associations adjusted for age remained essentially the same (all p < .01). Discussion: Children with advanced cancer with lower family income and younger age are at high risk for poorer QOL. Oncology nurses should seek to identify families who may benefit from additional resources to promote QOL.

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.

Automatic inpatient palliative care consultation (PCC): Too little, too late to impact quality of life for advanced cancer patients?

2013 ◽  
Vol 31 (15_suppl) ◽  
pp. e20565-e20565
Author(s):  
Gabrielle Betty Rocque ◽  
Toby Christopher Campbell ◽  
Anne Elizabeth Barnett ◽  
Renae M Quale ◽  
Jens C. Eickhoff ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Services ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Primary Outcome ◽  
Intervention Group ◽  
Control Group ◽  
Patient Reported ◽  
Small Patient Population

e20565 Background: Patients with advanced cancer who are hospitalized have high symptom burden and a short life expectancy, which may warrant PCC. Methods: Using sequential cohorts, we prospectively assessed implementation of automatic PCC for hospitalized cancer patients. The primary outcome was hospice utilization. Secondary outcomes included evaluation of changes in quality of life (FACIT-PAL), symptoms (ESAS), satisfaction (FAMCARE), and anxiety and depression (HADS). Surveys were administered at baseline, 2 weeks and 3 months post-hospitalization. Chart abstraction was utilized to assess demographics, resource use, and survival information. Results: Patients were evaluated consecutively (65 in the control group, 70 in the intervention). At admission, 91% reported uncontrolled symptoms: 52% pain; 15% dyspnea. 60% of intervention patients received PCC during their first admission. 54 patients completed surveys (29 control group, 25 PCC group), 64 patients declined or were unable to complete surveys, 16 patients were excluded due to language barriers, physician preference, or not receiving surveys. Using an intent-to-treat analysis, there was no difference between patients in the control and the intervention group in FACIT-PAL (119 ± 29 vs 123 ± 30, p = 0.68 ), ESAS (28 ± 14 vs 26 ± 15, p = 0.74) HADS (13 ± 6.6 vs. 12.± 4.7, p = 0.58), or FAMCARE (58 ± 9.1 vs 59 ± 8.6, p = 0.61). In both groups, patients had modest worsening of symptoms and quality of life over the course of the study. Survival and Health Services data analysis, including hospice referral, is proceeding. Conclusions: Automatic PPC had little impact on patient-reported symptoms and quality of life. Limitations included: small patient population; high rate of incomplete surveys, likely due to illness burden; penetration of the PCC was limited to 60% by patient or provider preference and consultant availability. Our primary outcome analysis (hospice utilization) is forthcoming, as are data on survival and Health Services outcomes.

Perceived unmet supportive care needs and determinants of quality of life among head and neck cancer survivors: a research protocol

2013 ◽  
Vol 69 (12) ◽  
pp. 2750-2758 ◽  
Author(s):  
Winnie K.W. So ◽  
K.C. Choi ◽  
Carmen W.H. Chan ◽  
Winnie P.Y. Tang ◽  
Alice W.Y. Leung ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Head And Neck Cancer ◽  
Supportive Care ◽  
Cancer Survivors ◽  
Head And Neck ◽  
Neck Cancer ◽  
Supportive Care Needs ◽  
Research Protocol ◽  
Care Needs
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