Financial difficulties are associated with greater total pain and suffering among patients with advanced cancer: results from the COMPASS study

Malhotra, Chetna; Harding, Richard; Teo, Irene; Özdemir, Semra; Koh, Gerald; Neo, Patricia Soek Hui; Lee, Lai Heng; Kanesvaran, Ravindran; Finkelstein, Eric A.; team, Compass study

doi:10.1007/s00520-019-05208-y

Cited by 36 publications

(54 citation statements)

References 51 publications

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“…Research from Australia reported that low socio-economic status was unrelated to inadequate access to palliative care [ 13 ] and that patients from the least disadvantaged groups were in fact less likely to be referred to palliative care services. A recent study [ 14 ] of 600 patients with stage 4 malignancy in Singapore revealed that patients with greater financial difficulties also reported worse physical, psychological, social and spiritual outcomes.…”

Section: Introductionmentioning

confidence: 99%

Socio-Economic Deprivation and Symptom Burden in UK Hospice Patients with Advanced Cancer—Findings from a Longitudinal Study

Lloyd‐Williams

Shiels

Dowrick

et al. 2021

Cancers

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Socio-economic deprivation is known to impact on cancer diagnosis, treatment and access to services, but little is known of the impact of socio-economic deprivation on symptom burden in patients with advanced cancer. Patients with advanced cancer attending hospice day services were recruited into a 24 week longitudinal study. An area-based index of social deprivation was collected along with depression and symptom burden at baseline, 8, 16 and 24 weeks. Of the 595 patients included, with an age range of 33–89 years and a mean age of 68 years, 67% were female, and 37% were diagnosed with cancer in the last 12 months. Twenty nine percent lived in one of the most deprived 20% of neighbourhoods. Patients living in the most socio-economically deprived areas were significantly likely to report receiving insufficient information regarding their cancer at diagnosis (p = 0.007), greater pain (p = 0.02), moderate to severe depression (p = 0.04) and higher global symptom burden (p = 0.04). This study is the first to report that patients with advanced cancer attending hospice services, living in the most deprived neighbourhoods experience significantly greater symptom burden, notably depression and pain. We recommend using patient outcome measures in order to provide targeted support and thereby reduce the increased symptom burden that socio-economically disadvantaged patients experience at the end of life.

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Section: Introductionmentioning

confidence: 99%

Socio-Economic Deprivation and Symptom Burden in UK Hospice Patients with Advanced Cancer—Findings from a Longitudinal Study

Lloyd‐Williams

Shiels

Dowrick

et al. 2021

Cancers

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“…Caregivers support patients in a range of activities, and they may also pay for patients' treatments and thereby bear a substantial part of the treatment financial burden. 5 Yet, patients' health remains the primary focus during consultations. As a result, caregivers who struggle with their caregiving responsibilities and experience poor wellbeing may feel that health care practitioners are not addressing their concerns and thereby perceive care to be worse.…”

Section: Discussionmentioning

confidence: 99%

“…Details of the study have been published. 5,21 The current analyses used follow-up data of up to 2 years.…”

Section: Study Setting and Designmentioning

confidence: 99%

“…We have used this approach previously. 5,25 Patients' and caregivers' anxiety This was measured with the anxiety subscale (7 items) of the Hospital Anxiety and Depression Scale. 28 The score ranged from 0 to 21, with a higher score indicating worse anxiety.…”

Section: Patients' Symptom Burdenmentioning

confidence: 99%

“…2 Studies show that most patients rate their experience with health care practitioners very highly, 3 and patients' physical, psychological, and financial well-being and their perception of treatment goals influence their reported experience. 4,5 For instance, patients who are anxious or distressed or have poor health report their experience with health care practitioners to be worse. 6,7 Patients who are optimistic regarding their cure report their experience with health care practitioners to be better, whereas those who understand that they cannot be cured express lower satisfaction with their health care practitioners.…”

Section: Introductionmentioning

confidence: 99%

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Experiences with health care practitioners among advanced cancer patients and their family caregivers: A longitudinal dyadic study

Malhotra

Chaudhry

Özdemir

et al. 2021

Cancer

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and for the COMPASS Study Group BACKGROUND: Assessing patient and caregiver experiences with care is central to improving care quality. The authors assessed variations in the experiences of advanced cancer patients and their caregivers with physician communication and care coordination by patient and caregiver factors. METHODS: The authors surveyed 600 patients with a stage IV solid malignancy and 346 caregivers every 3 months for more than 2 years. Patients entered the cohort any time during their stage IV trajectory. The analytic sample was restricted to patient-caregiver dyads (n = 299). Each survey assessed patients' experiences with physician communication and care coordination; patients' symptom burden; caregivers' quality of life; and patients' and caregivers' anxiety, financial difficulties, and perceptions of treatment goals. An actor-partner interdependence framework was used for analysis. RESULTS: Patients reported better physician communication (average marginal effect [AME], 6.04; 95% confidence interval [CI], 3.82 to 8.26) and care coordination (AME, 8.96; 95% CI, 6.94 to 10.97) than their caregivers. Patients reported worse care coordination when they (AME, -0.56; 95% CI, -1.07 to -0.05) or their caregivers (AME, -0.58; 95% CI, -0.97 to -0.19) were more anxious. Caregivers reported worse care coordination when they were anxious (AME, -1.62; 95% CI, -2.02 to -1.23) and experienced financial difficulties (AME, -2.31; 95% CI, -3.77 to -0.86). Correct understanding of the treatment goal (vs being uncertain) was associated with caregivers reporting physician communication as better (AME, 3.67; 95% CI, 0.49 to 6.86) but with patients reporting it as worse (AME, -3.29; 95% CI, -6.45 to -0.14). CONCLUSIONS: Patients' and caregivers' reports of physician communication and care coordination vary with aspects of their own and each other's well-being and with their perceptions of treatment goals. These findings may have implications for improving patients' and caregivers' reported experiences with health care practitioners.

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Goals of Care Among Patients With Advanced Cancer and Their Family Caregivers in the Last Years of Life

Ozdemir,

Chaudhry,

Malhotra

et al. 2024

JAMA Netw Open

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ImportanceUnderstanding goals of care for terminally ill patients at the end of life is crucial to ensure that patients receive care consistent with their preferences.ObjectivesTo investigate the patterns of goals of care among patient-caregiver dyads over the last years of the patient’s life and the associations of the goals of care with patient-caregiver characteristics.Design, Setting, and ParticipantsThis prospective cohort study of 210 patient-caregiver dyads involved surveys every 3 months from July 8, 2016, until the patient’s death or February 28, 2022. Data from the last 2 years of the patients’ lives were analyzed. Dyads, which comprised patients with stage IV solid cancer and their caregivers, were recruited from outpatient clinics at 2 major cancer centers in Singapore.Main Outcomes and MeasuresGoals of care were examined via the tradeoffs between life extension and symptom management and between life extension and cost containment. The actor-partner interdependence framework was implemented using mixed-effects linear regressions.ResultsThis study included 210 dyads (patients: mean [SD] age, 62.6 [10.5] years; 108 men [51.4%]; caregivers: mean [SD] age, 49.4 [14.6] years; 132 women [62.9%]). On average, 34% of patients (264 of 780 observations; range, 23%-42%) and 29% of caregivers (225 of 780 observations; range, 20%-43%) prioritized symptom management over life extension, whereas 24% of patients (190 of 780 observations; range, 18%-32%) and 19% of caregivers (148 of 780 observations; range, 8%-26%) prioritized life extension. Between cost containment and life extension, on average, 28% of patients (220 of 777 observations; range, 22%-38%) and 17% of caregivers (137 of 780 observations; range, 10%-25%) prioritized cost containment, whereas 26% of patients (199 of 777 observations; range, 18%-34%) and 35% of caregivers (271 of 780 observations; range, 25%-45%) prioritized life extension. Goals of care did not change as patients approached death. Patients prioritized symptom management if they experienced higher symptom burden (average marginal effect [SE], 0.04 [0.01]), worse spiritual well-being (average marginal effect [SE], −0.04 [0.01]), and accurate (vs inaccurate) prognostic awareness (average marginal effect [SE], 0.40 [0.18]) and if their caregivers reported accurate prognostic awareness (average marginal effect [SE], 0.53 [0.18]), lower impact of caregiving on finances (average marginal effect [SE], −0.28 [0.08]), and poorer caregiving self-esteem (average marginal effect [SE], −0.48 [0.16]). Compared with patients, caregivers expressed lower preferences for cost containment (average marginal effect [SE], −0.63 [0.09]). Patients prioritized cost containment if they were older (average marginal effect [SE], 0.03 [0.01]), had higher symptom burden (average marginal effect [SE], 0.04 [0.01]), had poorer spiritual well-being (average marginal effect [SE], −0.04 [0.01]), and their caregivers reported poorer caregiving self-esteem (average marginal effect [SE], −0.51 [0.16]) and more family support (average marginal effect [SE], −0.30 [0.14]).Conclusions and RelevanceIn this cohort study of patient-caregiver dyads, findings suggested the importance of interventions aimed at reducing discordance in goals of care between patients and caregivers and helping them develop realistic expectations to avoid costly, futile treatments.

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Financial difficulties are associated with greater total pain and suffering among patients with advanced cancer: results from the COMPASS study

Cited by 36 publications

References 51 publications

Socio-Economic Deprivation and Symptom Burden in UK Hospice Patients with Advanced Cancer—Findings from a Longitudinal Study

Socio-Economic Deprivation and Symptom Burden in UK Hospice Patients with Advanced Cancer—Findings from a Longitudinal Study

Experiences with health care practitioners among advanced cancer patients and their family caregivers: A longitudinal dyadic study

Goals of Care Among Patients With Advanced Cancer and Their Family Caregivers in the Last Years of Life

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