Supporting Supportive Care in Cancer: The ethical importance of promoting a holistic conception of quality of life

PURPOSE: Patients with high-risk myelodysplastic syndrome (MDS) have high mortality from bone marrow failure or transformation to acute leukemia. Supportive care is standard therapy. We previously reported that azacitidine (Aza C) was active in patients with high-risk MDS.PATIENTS AND METHODS: A randomized controlled trial was undertaken in 191 patients with MDS to compare Aza C (75 mg/m2/d subcutaneously for 7 days every 28 days) with supportive care. MDS was defined by French-American-British criteria. New rigorous response criteria were applied. Both arms received transfusions and antibiotics as required. Patients in the supportive care arm whose disease worsened were permitted to cross over to Aza C.RESULTS: Responses occurred in 60% of patients on the Aza C arm (7% complete response, 16% partial response, 37% improved) compared with 5% (improved) receiving supportive care (P < .001). Median time to leukemic transformation or death was 21 months for Aza C versus 13 months for supportive care (P = .007). Transformation to acute myelogenous leukemia occurred as the first event in 15% of patients on the Aza C arm and in 38% receiving supportive care (P = .001). Eliminating the confounding effect of early cross-over to Aza C, a landmark analysis after 6 months showed median survival of an additional 18 months for Aza C and 11 months for supportive care (P = .03). Quality-of-life assessment found significant major advantages in physical function, symptoms, and psychological state for patients initially randomized to Aza C.CONCLUSION: Aza C treatment results in significantly higher response rates, improved quality of life, reduced risk of leukemic transformation, and improved survival compared with supportive care. Aza C provides a new treatment option that is superior to supportive care for patients with the MDS subtypes and specific entry criteria treated in this study.

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O-60 The big lung trial quality of life study: Determining the effect of cisplatin-based chemotherapy for supportive care patients with non-small cell lung cancer (NSCLC)

Lung Cancer ◽

10.1016/s0169-5002(03)91718-1 ◽

2003 ◽

Vol 41 ◽

pp. S20-S21 ◽

Cited By ~ 1

Author(s):

Julia M. Brown ◽

Helen C. Thorpe ◽

Vicky Napp ◽

Richard J. Stephens ◽

David J. Fairlamb ◽

...

Keyword(s):

Quality Of Life ◽

Lung Cancer ◽

Supportive Care ◽

Small Cell Lung Cancer ◽

Cell Lung Cancer ◽

Small Cell ◽

Small Cell Lung ◽

Life Study ◽

Trial Quality

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Associations of coping strategies with quality of life (QOL) and mood in patients with acute myeloid leukemia (AML).

Journal of Clinical Oncology ◽

10.1200/jco.2021.39.15_suppl.e19012 ◽

2021 ◽

Vol 39 (15_suppl) ◽

pp. e19012-e19012

Author(s):

Matthew J. Reynolds ◽

Mitchell W. Lavoie ◽

Bailey T. Jones ◽

Ashley M. Nelson ◽

Hermioni L. Amonoo ◽

...

Keyword(s):

Quality Of Life ◽

Supportive Care ◽

Coping Strategies ◽

Regression Models ◽

Symptom Burden ◽

Anxiety Symptoms ◽

Hospitalized Patients ◽

Depression Symptoms ◽

Intensive Chemotherapy

e19012 Background: Patients with AML who receive intensive chemotherapy experience immense physical and psychological symptoms, which can result in a substantial deterioration of QOL. As data on the relationship between AML patient coping strategies and patient-reported outcomes are lacking, we aimed to determine the associations between patients’ coping strategies and their quality of life and mood. Methods: We conducted a secondary analysis of cross-sectional data from a multi-site randomized supportive care trial for hospitalized patients diagnosed with AML and receiving intensive chemotherapy. Within 72 hours of initiating chemotherapy, patients completed baseline assessments of QOL (FACT-Leu), anxiety and depression symptoms (HADS), and symptom burden (ESAS). Patients also completed subscales from the Brief Cope to assess baseline use of coping strategies. We created high-order factors (approach-oriented coping vs. avoidant-oriented coping) from the coping subscales and utilized the median split method to identify the proportions of patients with high use of approach and avoidant-oriented coping strategies, respectively. We used linear regression models adjusting for age, gender and diagnosis type (newly diagnosed vs. relapsed/refractory AML) to examine the relationships between patients’ use of coping strategies and their baseline QOL, mood and symptom burden. Results: A total of 160 patients were enrolled in the study (60.0% male; median age 64.4 years [range 19.7-80.1]). Overall, 47.5% (76/160) of patients reported high use of approach-oriented coping strategies, while 38.8% (62/160) reported high use of avoidant-oriented strategies. In regression models, the greater use of approach-oriented coping strategies at baseline was associated with higher baseline QOL (β = 1.33, SE = 0.44, P= 0.003), lower depression (β = -0.28, SE = 0.07, P< 0.001) and anxiety symptoms (β = -0.24, SE = 0.08, P= 0.002), and lower symptom burden (β = -0.96, SE = 0.34, P= 0.006). By contrast, the greater use of avoidant-oriented coping strategies at baseline was associated with lower baseline QOL (β = -4.98, SE = 0.81, P< 0.001), higher depression (β = 0.60, SE = 0.13, P< 0.001) and anxiety symptoms (β = 0.79, SE = 0.14, P< 0.001), and worse symptom burden (β = 2.30, SE = 0.64, P< 0.001). Conclusions: Newly hospitalized patients with AML who utilize approach-oriented coping strategies experience better baseline QOL and mood, and a lower symptom burden. These findings underscore the need for supportive care interventions that promote effective coping in patients with AML, to improve patients’ QOL and reduce their physical and psychological distress.

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

Neuro-Oncology ◽

10.1093/neuonc/noab196.750 ◽

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.

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Supportive Care and Quality of Life

10.1007/springerreference_225412 ◽

2012 ◽

Keyword(s):

Quality Of Life ◽

Supportive Care

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Supportive Care Needs of Patients with Head and Neck Cancer Referred to Palliative Medicine

Otolaryngology ◽

10.1177/0194599820912029 ◽

2020 ◽

Vol 163 (2) ◽

pp. 356-363

Author(s):

Chen Lin ◽

Stephen Y. Kang ◽

Samantha Donermeyer ◽

Theodoros N. Teknos ◽

Sharla M. Wells-Di Gregorio

Keyword(s):

Quality Of Life ◽

Substance Use ◽

Head And Neck Cancer ◽

Supportive Care ◽

Head And Neck ◽

Neck Cancer ◽

Palliative Medicine ◽

Symptom Control ◽

Case Series

Objective Patients with head and neck cancer (HNC) face a unique set of unmet needs. A subset of these patients experience symptom control challenges related to their disease burden and treatments. A multidisciplinary approach involving palliative medicine is underutilized but crucial to identify and address these concerns. There is limited information on palliative integration with head and neck oncology. Study Design Case series with planned data collection. Setting Academic quaternary care center. Subjects and Methods We provide descriptive analyses of patients with HNC, including psychodiagnostic assessment and validated quality-of-life screening, from patients’ first encounter at outpatient palliative medicine. Results HNC (N = 80) contributed the greatest number of palliative referrals (25%) between 2010 and 2012. This cohort was 74% male and 79% Caucasian with a mean age of 53 years (95% CI, 51.1-54.9) and with stage IV disease of the oral cavity (28%) or oropharynx (31%). Sixty-three percent of patients had no evidence of disease. Seventy-five percent had a psychological history based on DSM-IV criteria ( Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition), and 70% had a history of substance use disorder. The most distressing quality-of-life concerns were pain, housing and financial problems, and xerostomia. Conclusions Patients with HNC who were referred to palliative medicine are burdened by multiple physical, psychological, substance use, and social challenges. We recommend comprehensive cancer-specific screening, such as the James Supportive Care Screening, to triage patients to appropriate supportive care services. Palliative care is one of many services that these patients may need, and it should be utilized at any point of the disease trajectory rather than reserved for end-of-life care.

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Colorectal cancer survivors’ quality of life: a qualitative study of unmet need

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2020-002190 ◽

2020 ◽

pp. bmjspcare-2020-002190

Author(s):

Amanda Drury ◽

Sheila Payne ◽

Anne-Marie Brady

Keyword(s):

Quality Of Life ◽

Colorectal Cancer ◽

Supportive Care ◽

Cancer Survivors ◽

Unmet Needs ◽

Unmet Need ◽

Safety Net ◽

The Impact

ObjectiveCancer survivors’ perceptions of healthcare have been identified as a predictor of quality of life (QoL) outcomes. This study aims to explore colorectal cancer (CRC) survivors’ perceptions of how cancer-related healthcare affects their QoL.MethodsSemistructured interviews were conducted with 22 CRC survivors receiving follow-up care between 1 and 5 years post diagnosis. Interviews were recorded, transcribed and analysed thematically.ResultsFive themes described the impact of healthcare experiences on CRC survivors’ QoL. While cancer survivors spoke positively of their relationships with healthcare professionals, many experienced a range of unmet information and supportive care needs. Participants described a range of positive and negative experiences, as power dynamics and navigation of healthcare systems had implications for their QoL. Where negative healthcare events aligned, survivors’ autonomy, dignity and confidence were undermined, and survivorship issues could be inadequately addressed. To address persistent unmet needs, survivors developed a safety net(work) of supports to bridge the gap of unmet needs in healthcare with varying outcomes.ConclusionsCancer survivors’ experience of follow-up and healthcare can positively or negatively affect their QoL. Preparation for cancer survivorship must be incorporated into the acute phase of diagnosis and treatment and interlinked with clear pathways of survivorship care and accessible supportive care, which support survivors to be equal partners in their healthcare. Understanding cancer survivors’ knowledge, expertise and mastery of their condition is essential to ensure delivery of person-centred supportive care that adequately addresses the survivor’s unmet needs.

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