Experienced quality of care and emotional functioning of patients with advanced cancer and their relatives: Results of a multicenter observational cohort study (eQuiPe).

2021 ◽  
Vol 39 (28_suppl) ◽  
pp. 3-3
Author(s):  
Janneke van Roij ◽  
Natasja Raijmakers ◽  
Laurien Ham ◽  
Marieke van den Beuken-van Everdingen ◽  
Ben van den Borne ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Quality Of Care ◽  
The Netherlands ◽  
Advanced Cancer ◽  
Continuity Of Care ◽  
Emotional Functioning ◽  
Metastatic Cancer ◽  
Reciprocal Relation ◽  
Netherlands Cancer Registry

3 Background: Previous studies on experienced quality of care and quality of life have not addressed the reciprocal relation between patients and their relatives. For the first time we were able to include almost 700 couples (patient – relative) in a palliative oncological care context. This study aims to assess the experienced quality of care and emotional functioning (EF) of patients with advanced cancer and their relatives, including their reciprocal relation by using a dyadic approach. Methods: A prospective multicentre observational study among patients with advanced cancer and their relatives, recruited from 40 hospitals in the Netherlands or self-enrolled between November 2017 and January 2020 (eQuiPe study). Patients with metastatic cancer and their relatives were eligible to participate. Respondents completed a questionnaire and clinical data of the patient were obtained by linking the information to the Netherlands Cancer Registry (NCR). Logistic regression analyses were performed on baseline data of 1,103 patients and 831 relatives to assess the association between experienced quality of care and EF of patients and relatives separately and across dyads. Results: In total, 1,103 (65%) patients and 831 (71%) relatives completed the baseline questionnaire, including 699 unique patient-relative couples. Patients experienced lower levels of quality of life, including EF, and more symptoms compared to the normative population ( p<.001). Relatives reported even clinically relevantly lower EF compared to patients (69 vs. 78, p<.001) and were less satisfied with care (59 vs. 74; p<.001). Being more satisfied with care in general ( p<.05) and clarity about who their central health care professional ( p<.05) were positively associated with high EF in patients. For relatives, perceived continuity of care ( p<.01) and continuity of information for the patient ( p<.05) were positively associated with high EF. Dyadic analyses showed that EF of patients ( p<.001) and relatives ( p<.001) was positively associated with EF of the other person and perceived continuity of care by relatives was positively associated with high EF in patients ( p<.01). Conclusions: Experienced integral organisation and satisfaction with care in patients and relatives are related to their EF. The additional reciprocal relation between patients’ and their relatives’ EF and the experienced continuity of care suggests the opportunity for a family‐centered approach to optimize advanced cancer care.

scholarly journals Perceptions of involvement in advance care planning and emotional functioning in patients with advanced cancer

2021 ◽  
Author(s):  
Lente L. Kroon ◽  
◽  
Janneke van Roij ◽  
Ida J. Korfage ◽  
An K. L. Reyners ◽  
...  
Keyword(s):  
Quality Of Care ◽  
Medical Treatment ◽  
Advanced Cancer ◽  
Advance Care Planning ◽  
Emotional Functioning ◽  
Solid Cancer ◽  
Care Planning ◽  
Advance Care ◽  
Prospective Longitudinal

Abstract Purpose Advance Care Planning (ACP) is positively associated with the quality of care, but its impact on emotional functioning is ambiguous. This study investigated the association between perceptions of ACP involvement and emotional functioning in patients with advanced cancer. Methods This study analyzed baseline data of 1,001 patients of the eQuiPe study, a prospective, longitudinal, multicenter, observational study on quality of care and quality of life in patients with advanced cancer in the Netherlands. Patients with metastatic solid cancer were asked to participate between November 2017 and January 2020. Patients’ perceptions of ACP involvement were measured by three self-administered statements. Emotional functioning was measured by the EORTC-QLQ-C30. A linear multivariable regression analysis was performed while taking gender, age, migrant background, education, marital status, and symptom burden into account. Results The majority of patients (87%) reported that they were as much involved as they wanted to be in decisions about their future medical treatment and care. Most patients felt that their relatives (81%) and physicians (75%) were familiar with their preferences for future medical treatment and care. A positive association was found between patients’ perceptions of ACP involvement and their emotional functioning (b=0.162, p<0.001, 95%CI[0.095;0.229]) while controlling for relevant confounders. Conclusions Perceptions of involvement in ACP are positively associated with emotional functioning in patients with advanced cancer. Future studies are needed to further investigate the effect of ACP on emotional functioning. Trial registration number NTR6584 Date of registration: 30 June 2017 Implications for Cancer Survivors Patients’ emotional functioning might improve from routine discussions regarding goals of future care. Therefore, integration of ACP into palliative might be promising.

scholarly journals Prospective cohort study of patients with advanced cancer and their relatives on the experienced quality of care and life (eQuiPe study): a study protocol

2020 ◽  
Vol 19 (1) ◽  
Author(s):  
Janneke van Roij ◽  
◽  
Myrte Zijlstra ◽  
Laurien Ham ◽  
Linda Brom ◽  
...  
Keyword(s):  
Palliative Care ◽  
Cohort Study ◽  
Quality Of Care ◽  
The Netherlands ◽  
Advanced Cancer ◽  
Number Of Patients ◽  
Changes Over Time ◽  
Prospective Longitudinal ◽  
Over Time

Abstract Background Palliative care is becoming increasingly important because the number of patients with an incurable disease is growing and their survival is improving. Previous research tells us that early palliative care has the potential to improve quality of life (QoL) in patients with advanced cancer and their relatives. According to limited research on palliative care in the Netherlands, patients with advanced cancer and their relatives find current palliative care suboptimal. The aim of the eQuiPe study is to understand the experienced quality of care (QoC) and QoL of patients with advanced cancer and their relatives to further improve palliative care. Methods A prospective longitudinal observational cohort study is conducted among patients with advanced cancer and their relatives. Patients and relatives receive a questionnaire every 3 months regarding experienced QoC and QoL during the palliative trajectory. Bereaved relatives receive a final questionnaire 3 to 6 months after the patients’ death. Data from questionnaires are linked with detailed clinical data from the Netherlands Cancer Registry (NCR). By means of descriptive statistics we will examine the experienced QoC and QoL in our study population. Differences between subgroups and changes over time will be assessed while adjusting for confounding factors. Discussion This study will be the first to prospectively and longitudinally explore experienced QoC and QoL in patients with advanced cancer and their relatives simultaneously. This study will provide us with population-based information in patients with advanced cancer and their relatives including changes over time. Results from the study will inform us on how to further improve palliative care. Trial registration Trial NL6408 (NTR6584). Registered in Netherlands Trial Register on June 30, 2017.

scholarly journals Schizophrenia in the Netherlands: Continuity of Care with Better Quality of Care for Less Medical Costs

PLoS ONE ◽  
2016 ◽  
Vol 11 (6) ◽  
pp. e0157150 ◽  
Author(s):  
Arnold van der Lee ◽  
Lieuwe de Haan ◽  
Aartjan Beekman
Keyword(s):  
Quality Of Care ◽  
The Netherlands ◽  
Continuity Of Care ◽  
Medical Costs

Dying from cancer

2018 ◽  
Author(s):  
Martin Scott-Brown
Keyword(s):  
Quality Of Life ◽  
Cancer Treatment ◽  
Advanced Cancer ◽  
Metastatic Cancer ◽  
Obstructive Uropathy ◽  
Poor Quality ◽  
Best Interest ◽  
Patient’S Perception ◽  
Acute Event

For many patients, dying from cancer has been an ever-present reality from the time they were diagnosed with incurable recurrent or metastatic cancer. Treatment may have delayed the inevitable, but there does come a point where aggressive management no longer improves the prognosis or can only prolong life that is of such a poor quality that it is not valued by the patient. It sometimes is easier to continue with treatment than to take the time with the patient to discuss the reasons why further treatment is not appropriate. For patients with advanced cancer and whose condition is deteriorating, a number of questions should be considered before initiating treatment aimed at prolonging life. Is this the final stage of a progressive deterioration or an acute event? Are the causes of this deterioration reversible? Are there any further oncological treatments that may improve the prognosis? What is the patient’s perception of their quality of life? Is there a realistic chance of return to a quality of life that will be of value to the patient? Is the patient dying? The ICU is usually not appropriate for patients with advanced cancer. Treatment of correctable causes (e.g. obstructive uropathy, chest infection) may still not be in the patient’s best interest if they recover only to face a period of further deterioration and distressing symptoms before they die. However, patients and their families must be included in discussions as to the level of further intervention and the reasons for stopping active treatment.

The Impacts of Prognostic Awareness on Mood and Quality of Life Among Patients With Advanced Cancer

2020 ◽  
Vol 37 (11) ◽  
pp. 904-912 ◽  
Author(s):  
EunKyo Kang ◽  
Jung Hun Kang ◽  
Su-Jin Koh ◽  
Eun-Kee Song ◽  
Hyun-Jeong Shim ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Advanced Cancer ◽  
Emotional Functioning ◽  
Treatment Decision ◽  
Well Being ◽  
Depressive Mood ◽  
Patient’S Satisfaction ◽  
Short Period ◽  
Significant Difference

Background: Accurate awareness of the prognosis is an important factor in the treatment decision of patients with advanced cancer; however, prognostic disclosure is still subject to debate because it can reduce patient’s satisfaction and increase depression. Aim: The purpose of this study is to assess whether patients’ prognostic awareness is associated with decreased quality of life (QoL) or increased depressive mood in patients with advanced cancer Design and Participants: In this cohort study, 386 patients with advanced cancer were recruited across 3 periods from December 2016 to August 2018. The outcome of this study was a change in QoL and depression according to the patients’ prognostic awareness at baseline, 3 months, and 6 months. Results: This study found significant differences in changes of QoL based on patients’ prognostic awareness. From baseline to 3 months, emotional functioning ( P = .039), pain ( P = .042), existential well-being ( P = .025), and social support ( P = .038) subscale scores improved significantly more in those with lack of prognostic awareness. Over 6 months, the group without prognostic awareness improved significantly in terms of physical functioning ( P = .037), emotional functioning ( P = .002), nausea/vomiting ( P = .048), and constipation ( P = .039) subscale scores and existential well-being scores ( P = .025). No significant difference between the groups was found in terms of depression. Conclusion: Accurate prognostic awareness may pose harm and may provide no additional benefits in terms of QoL and mood among patients with advanced cancer for a short period of time.

scholarly journals Changes in Quality of Care and Quality of Life of Outpatients With Advanced Cancer After a Regional Palliative Care Intervention Program

2014 ◽  
Vol 48 (4) ◽  
pp. 602-610 ◽  
Author(s):  
Akemi Yamagishi ◽  
Kazuki Sato ◽  
Mitsunori Miyashita ◽  
Yasuo Shima ◽  
Yoshiyuki Kizawa ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Quality Of Care ◽  
Advanced Cancer ◽  
Intervention Program ◽  
Care Intervention

scholarly journals Impact of the COVID-19 pandemic on quality of life and emotional wellbeing in patients with bone metastases treated with radiotherapy: a prospective cohort study

2021 ◽  
Vol 38 (2) ◽  
pp. 209-217
Author(s):  
M. M. T. J. Bartels ◽  
R. Gal ◽  
J. M. van der Velden ◽  
J. J. C. Verhoeff ◽  
J. J. Verlaan ◽  
...  
Keyword(s):  
Quality Of Life ◽  
The Netherlands ◽  
Bone Metastases ◽  
Cancer Patients ◽  
Emotional Functioning ◽  
Disease Patient ◽  
Strong Increase ◽  
Patient Reported ◽  
General Quality

AbstractImplementation of COVID-19 measures may have induced concerns about access and quality of health care for cancer patients with bone metastases, and it may have affected their quality of life. In this study, we evaluated the effect of the first COVID-19 lockdown on quality of life and emotional functioning of patients with stage IV cancer treated for painful bone metastases in the UMC Utrecht, the Netherlands. A COVID-19 specific questionnaire was sent to active participants in the Prospective Evaluation of interventional StudiEs on boNe meTastases (PRESENT) cohort, consisting of patients irradiated for metastatic bone disease. Patient reported outcomes (PROs) were compared with the last two PROs collected within the PRESENT cohort before the COVID-19 lockdown in the Netherlands on the 16th of March. For the 169 (53%) responders, median age at start of lockdown was 68 years (range 38–92) and 62% were male. Patients reported a statistically significant decrease in emotional functioning (83.6 to 79.2, P = 0.004) and in general quality of life score during the COVID-19 lockdown (72.4 to 68.7, P = 0.007). A steep increase in feeling isolated was reported (18% before and 67% during lockdown). This study has shown a strong increase in the experience of isolation and a decrease of emotional functioning and general quality of life during the COVID-19 lockdown in cancer patients with bone metastases. Due to the nature of the treatment of this patient population, efforts should be made to minimize these changes during future lockdowns.

Quality-of-Life Measurement in Advanced Cancer: Assessing the Individual

1999 ◽  
Vol 17 (11) ◽  
pp. 3603-3611 ◽  
Author(s):  
Dympna Waldron ◽  
Ciaran A. O'Boyle ◽  
Michael Kearney ◽  
Michael Moriarty ◽  
Desmond Carney
Keyword(s):  
Quality Of Life ◽  
Advanced Cancer ◽  
Internal Validity ◽  
Semistructured Interview ◽  
Incurable Cancer ◽  
Life Measurement ◽  
The Difference ◽  
The Individual ◽  
Very High

PURPOSE: Despite the increasing importance of assessing quality of life (QoL) in patients with advanced cancer, relatively little is known about individual patient's perceptions of the issues contributing to their QoL. The Schedule for the Evaluation of Individual Quality of Life (SEIQoL) and the shorter SEIQoL–Direct Weighting (SEIQoL-DW) assess individualized QoL using a semistructured interview technique. Here we report findings from the first administration of the SEIQoL and SEIQoL-DW to patients with advanced incurable cancer. PATIENTS AND METHODS: QoL was assessed on a single occasion using the SEIQoL and SEIQoL-DW in 80 patients with advanced incurable cancer. RESULTS: All patients were able to complete the SEIQoL-DW, and 78% completed the SEIQoL. Of a possible score of 100, the median QoL global score was as follows: SEIQoL, 61 (range, 24 to 94); SEIQoL-DW, 60.5 (range, 6 to 95). Psychometric data for SEIQoL indicated very high levels of internal consistency (median r = .90) and internal validity (median R2 = 0.88). Patients' judgments of their QoL were unique to the individual. Family concerns were almost universally rated as more important than health, the difference being significant when measured using the SEIQoL-DW (P = .002). CONCLUSION: Patients with advanced incurable cancer were very good judges of their QoL, and many patients rated their QoL as good. Judgments were highly individual, with very high levels of consistency and validity. The primacy given to health in many QoL questionnaires may be questioned in this population. The implications of these findings are discussed with regard to clinical assessment and advance directives.

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