Quality of life and quality of care as experienced by patients with advanced cancer and their relatives: A multicentre observational cohort study (eQuiPe)

Roij, Janneke van; Raijmakers, Natasja; Ham, Laurien; Everdingen, M.H.J. van den Beuken-van; Borne, Ben van den; Creemers, Geert-Jan; Hunting, Jarmo C B; Kuip, Evelien; Leeuwen, L. Van; Laarhoven, Hanneke W. M. van; Mandigers, Caroline; Nieboer, Peter; Velden, Lilly–Ann van der; Zuylen, Lia van; Gelissen, J.P.T.M.; Zijlstra, Myrte; Brom, Linda; Fransen, Heidi P.; Poll-Franse, Lonneke V van de

doi:10.1016/j.ejca.2022.01.039

Cited by 29 publications

(28 citation statements)

References 31 publications

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“…The importance of the GP in supporting the family system is highlighted in that logistic regression showed that our secondary outcome of receiving sufficient family support was more likely in those with good continuity of primary care. In accordance with this, a recent survey, that included 699 patients with advanced cancer and their family carers in the Netherlands, the perception of continuity of care was associated with higher emotional functioning of the relatives and of the patients 40 .…”

Section: Comparison With Existing Literaturementioning

confidence: 58%

Characteristics of good home-based end-of-life care: analysis of 5-year data from a nationwide mortality follow-back survey in England

ElMokhallalati¹,

Chapman²,

Relton

et al. 2022

Br J Gen Pract

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Aim: To determine what characterises good quality end-of-life care for home-dwelling patients. Design and setting: An observational study using 5-year data from the National Survey of Bereaved People (VOICES). Methods: Analysis was based on 63,598 decedents who were cared for at home in the last three months of life, drawn from 110,311 completed mortality follow-back surveys of a stratified sample of 246,763 deaths registered in England between 2011 and 2015. Logistic regression analyses were used to identify independent variables associated with overall quality of end-of-life care and other indicators of quality of end-of-life care. Results: Patients who received good continuity of primary care (adjusted OR = 2.03; 95% CI, 2.01 to2.06) and palliative care support (adjusted OR = 1.86; 95% CI, 1.84 to 1.86) experienced better overall quality of end-of-life care as perceived by relatives. Decedents who died from cancer or died outside hospital were more likely to receive good end-of-life care as perceived by relatives. Being older and female, from the least socio-economic deprived areas and being white were associated with better overall end-of-life care as perceived by relatives. Conclusion: Good continuity of primary care was associated with better quality of end-of-life care. Improved end-of-life care was also associated with specialist palliative care support and death outside of hospital. Disparities still exist for those from minority ethnic groups and living in areas of socio-economic deprivation. Future commissioning and initiatives must consider these variables to provide a more equitable service.

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Section: Comparison With Existing Literaturementioning

confidence: 58%

Characteristics of good home-based end-of-life care: analysis of 5-year data from a nationwide mortality follow-back survey in England

ElMokhallalati¹,

Chapman²,

Relton

et al. 2022

Br J Gen Pract

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“…An adjustment was made for age and gender in multivariable linear regression analyses. When age was not linearly related to the outcome, it was taken into account as categorical variable (18-50, 50-75, 75 + years) [29]. Missing data in the subscales of QoC and QoL ranged between 0.9 and 7.5% and were found to be completely missing at random.…”

Section: Discussionmentioning

confidence: 99%

“…Moreover, advanced cancer patients often feel socially excluded, because their medical appointments and the physical and psychological symptoms related to advanced cancer and its treatments make them miss out on social events [27]. Even though cancer treatment in the palliative phase predominantly focusses on reducing symptoms and enhancing a patient's functioning, the experienced QoL of advanced cancer patients is impaired compared to non-advanced cancer patients [28,29].…”

Section: Introductionmentioning

confidence: 99%

Quality of care and quality of life as experienced by patients with advanced cancer of a rare tumour type: results of the multicentre observational eQuiPe study

et al. 2023

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Purpose Patients with a rare cancer face di culties during their disease trajectory, such as delayed diagnosis and lack of expert care. However, little is known about their perceived Quality of Care (QoC) and Quality of Life (QoL) in the advanced disease stage. We aimed to assess the QoC and QoL as experienced by patients with advanced rare cancers compared to patients with advanced common cancers.Methods In this cross-sectional study, baseline data of patients with advanced cancer from the multicentre, longitudinal, observational eQuipe study were analysed. Multivariable linear regression analyses were conducted to assess differences in experienced QoC (continuity of care, continuity of information, and satisfaction with care) and QoL (functioning, symptoms, overall QoL, and social wellbeing) between advanced rare and common cancer patients. ResultsOf the 1,087 included patients, 106 (9.8%) had a rare cancer type. In comparison to patients with advanced common cancers, patients with advanced rare cancers experienced signi cantly lower continuity of care (77.8 vs. 71.1 respectively, p=0.011) and social functioning (78.8 vs. 72.6 respectively, p=0.012). No differences were found regarding continuity of information, satisfaction with care, overall QoL, and social wellbeing.Conclusions Patients with advanced rare cancers experience less continuity of care and the impact of the disease on social and family life seems higher compared to patients with advanced common cancers.Implications for Cancer Survivors To enhance the QoC and QoL of patients with advanced rare cancers, supportive care should mainly focus on improving continuity of care and patients' social functioning.

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“…Such support can be provided by the general practitioner or by the patient's attending physician. Clinicians should keep the role and well‐being of relatives in mind during the whole disease trajectory (van Roij et al, 2022 ). They should be aware that relatives may not yet be activated to take up a role as informal caregivers.…”

Section: Discussionmentioning

confidence: 99%

Caregiver activation of relatives of patients with advanced cancer

Bakker

Witkamp

Luu

et al. 2022

European J Cancer Care

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Objective Relatives of patients with advanced cancer often have many caring responsibilities. Not everyone may have sufficient knowledge, skills, and confidence—also known as caregiver activation—to provide such care. We assessed caregiver activation in relatives and its association with their personal characteristics and their own well‐being. Methods A cross‐sectional study among relatives of patients with advanced cancer. Measures included caregiver activation (C‐PAM), resilience, personal self‐care, caregiver burden, depressive symptoms, quality of life, and social well‐being. The C‐PAM distinguishes four levels of activation, ranging from poor (level 1) to adequate (level 4). Bivariate and multivariable regression analyses were performed. Results Two hundred fifty‐four relatives were included; 32% had level 1 activation, 30% level 2, 27% level 3 and 11% level 4. Higher levels of caregiver activation were found among partners, those who provided more hours of informal care, were more resilient, and scored higher on personal self‐care. Higher caregiver activation was associated with lower caregiver burden, less depressive symptoms, and better social well‐being. Conclusion In our study, the majority of relatives seem insufficiently prepared to provide care for their loved one. Supporting them in gaining knowledge, skills, and confidence to provide such care may improve their own well‐being.

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Quality of life and quality of care as experienced by patients with advanced cancer and their relatives: A multicentre observational cohort study (eQuiPe)

Cited by 29 publications

References 31 publications

Characteristics of good home-based end-of-life care: analysis of 5-year data from a nationwide mortality follow-back survey in England

Characteristics of good home-based end-of-life care: analysis of 5-year data from a nationwide mortality follow-back survey in England

Quality of care and quality of life as experienced by patients with advanced cancer of a rare tumour type: results of the multicentre observational eQuiPe study

Caregiver activation of relatives of patients with advanced cancer

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