Trajectories of Patient-Reported Outcomes After Palliative Gastrointestinal Surgery in Advanced Cancer: Is Good Quality of Life Sustainable?

To evaluate the trajectories and sustainability of health-related quality of life (HRQoL) outcomes after palliative gastrointestinal (GI) surgery and perioperative factors associated with HRQoL improvement postsurgery. Background: Palliative patients face a wide range of physical, emotional, social, and functional challenges. In evaluating the efficacy of palliative surgical interventions, a major pitfall of traditional surgical outcome measures is that they fall short of measuring outcomes that are meaningful to patients during end-of-life. HRQoL tools may provide a more comprehensive assessment of the true value and impact of palliative surgery. Methods: We prospectively recruit advanced cancer patients undergoing palliative GI surgery. The Functional Assessment of Cancer Therapy-General (FACT-G) questionnaire was administered before and at regular intervals after surgery. HRQoL improvement was defined as ≥4-points increment in FACT-G total score over baseline. Duration of sustained HRQoL improvement above this threshold and factors associated with varying extents of HRQoL change were evaluated. Results: Of the 65 patients, intestinal obstruction was the most common indication for surgery (70.8%). The mean baseline FACT-G total score was 70.7 (95% CI: 66.3-75.1). Forty-six (70.8%) patients experienced HRQoL improvement after surgery. This HRQoL improvement was sustained over a median duration of 3.5 months and was driven mainly by improvements in patients' physical and emotional well-being. Albumin was significantly associated with the extent of HRQoL improvements (P = 0.043). Conclusion: A clinically significant and sustained improvement in HRQoL was observed after palliative GI surgery. Patients with higher preoperative albumin levels were more likely to experience HRQoL improvements.

Comparing the effect of a consult model versus an integrated palliative care and medical oncology co-rounding model on health care utilization in an acute hospital - an open-label stepped-wedge cluster-randomized trial.

BACKGROUND: The benefit of specialist palliative care for cancer inpatients is established, but the best method to deliver specialist palliative care is unknown. AIM: To compare a consult model versus a co-rounding model; both provide the same content of specialist palliative care to individual patients but differ in the level of integration between palliative care and oncology clinicians. DESIGN: An open-label, cluster-randomized trial with stepped-wedge design. The primary outcome was hospital length of stay; secondary outcomes were 30-day readmissions and access to specialist palliative care. ClinicalTrials.gov number NCT03330509. SETTING/PARTICIPANTS: Cancer patients admitted to the oncology inpatient service of an acute hospital in Singapore. RESULTS: A total of 5681 admissions from December 2017 to July 2019 were included, of which 5295 involved stage 3-4 cancer and 1221 received specialist palliative care review. Admissions in the co-rounding model had a shorter hospital length of stay than those in the consult model by 0.70 days (95%CI -0.04 to 1.45, p = 0.065) for all admissions. In the sub-group of stage 3-4 cancer patients, the length of stay was 0.85 days shorter (95%CI 0.05-1.65, p = 0.038). In the sub-group of admissions that received specialist palliative care review, the length of stay was 2.62 days shorter (95%CI 0.63-4.61, p = 0.010). Hospital readmission within 30 days (OR1.03, 95%CI 0.79-1.35, p = 0.822) and access to specialist palliative care (OR1.19, 95%CI 0.90-1.58, p = 0.215) were similar between the consult and co-rounding models. CONCLUSIONS: The co-rounding model was associated with a shorter hospital length of stay. Readmissions within 30 days and access to specialist palliative care were similar.

Development of a short form of the Singapore Caregiver Quality of Life Scale - Dementia: SCQOLS-D-15.

PURPOSE: The Singapore Caregiver Quality of Life Scale - Dementia (SCQOLS-D), developed based on the Singapore Caregiver Quality of Life Scale (SCQOLS), comprises 5 domains and 63 items. It has been shown to be a valid and reliable measurement scale. This study aimed to develop and evaluate a short form of the SCQOLS-D. METHODS: Data were collected from 102 family caregivers of person with dementia in Singapore. Candidate items were shortlisted by factor analysis, correlation and best subset regression. Shortlisted items with the best measurement properties including correlations with the long form and other established measures, internal consistency and test-retest reliability were identified. Their properties were compared with the corresponding domain scores in the long form of SCQOLS-D and a short form of the SCQOLS. A total score based on the average of the domain scores was also evaluated. RESULTS: A total of fifteen items, two to four items per domain, were selected. The total and domain scores generated from these items strongly correlated with the corresponding score of the long form (correlation coefficients: 0.83-0.97). The short and long forms had comparable correlation coefficients with Negative Personal Impact and Positive Personal Impact measures. The short form showed good internal consistency (Cronbach's alpha: 0.84-0.92) and test-retest reliability (intra-class correlation coefficient: 0.72-0.93). These 15 items form the SCQOLS-D-15, an abbreviated version of the SCQOLS-D. CONCLUSION: The SCQOLS-D-15 showed acceptable measurement properties. This serves as an alternative to the SCQOLS-D to provide rapid assessment of the overall and domain-specific quality of life of caregivers of persons with dementia.

Development and evaluation of the Singapore Caregiver Quality of Life Scale - Dementia.

PURPOSE: To develop and evaluate a measurement scale for multi-domain assessment of the quality of life of family caregivers of persons with dementia (PWD) in Singapore, a multi-ethic society in South-East Asia where English is the lingua franca. METHODS: Items from the Singapore Caregiver Quality of Life Scale (SCQOLS), which was originally developed in the context of advanced cancers, were adopted as candidate items. Furthermore, a multi-disciplinary panel reviewed dementia-specific caregiver quality of life scales to identified items not covered in SCQOLS for inclusion as candidate items. A pilot study of 31 family caregivers of PWD was conducted to solicit inputs on candidate items; 102 family caregivers of PWD were surveyed for evaluation of the scale's measurement properties. RESULTS: Factor analysis confirmed a 5-domain structure of the 63 candidate items. The Root Mean Square Error of Approximation was 0.056 and Comparative Fit Index was 0.928. Convergent validity of the total and domain scores was demonstrated in terms of correlation with the Brief Assessment Scale for Caregivers and its sub-scales. The scores also showed an expected pattern of correlation with hours spent on caregiving per week. Known-group validity was demonstrated by differences in mean scores between functional staging groups. Cronbach's alpha of the total and domain scores ranged from 0.89 to 0.95. Test-retest reliability (intraclass correlation coefficient) ranged from 0.77 to 0.92. CONCLUSIONS: The Singapore Caregiver Quality of Life Scale - Dementia (SCQOLS-D) is a quality of life measurement scale for family caregivers of persons with dementia that is valid and reliable.

Reference values for and interpretation of the Singapore Caregiver Quality of Life Scale: a quantile regression approach.

PURPOSE: The Singapore Caregiver Quality of Life Scale (SCQOLS) was recently developed and validated in two languages - English and Chinese. The total and domain scores are scaled to range from 0 to 100. However, the scale is not at the interval-ratio level of measurement. To facilitate interpretation, we established the percentiles of the scale's total and domain scores among family caregivers of patients with advanced cancers and demonstrate the effect size in terms of differences in relation to caregiver and patient characteristics. METHODS: Data were drawn from a cross-sectional survey of family caregivers of patients with stage III or IV solid cancers in Singapore. Quantile regression was used to estimate the percentiles in relation to caregiver and patient characteristics. RESULTS: Participants in adjacent categories of patient's performance status and caregiver's having other family members to share caregiving duties differed by 3 to 5 points in median quality of life total score and most domain scores (each Bonferroni-adjusted P, P[B], < 0.05). Ethnicity was associated with the Physical Well-being and Experience & Meaning domain scores (each P[B] < 0.05), with variable direction and magnitude. Education was associated with Mental Well-being and Financial Well-being (each P[B] < 0.05). Equations and examples for calculation of the percentiles are provided. CONCLUSION: Percentiles and effect size estimates are provided to facilitate interpretation of the SCQOLS.

Two valid and reliable short forms of the Singapore caregiver quality of life scale were developed: SCQOLS-10 and SCQOLS-15.

OBJECTIVES: The Singapore Caregiver Quality of Life Scale (SCQOLS) comprises five domains and 51 items in total. This study aimed to develop and evaluate short forms of SCQOLS. STUDY DESIGN AND SETTING: Data were collected from 612 family caregivers of patients with advanced cancers in Singapore. Exploratory factor analysis and best subset regression were used to identify candidate items for each domain. The short forms were evaluated for measurement properties. RESULTS: Inclusion of at least two items per domain in the short form gave correlation coefficients of at least 0.8 with the corresponding domain scores in the full-length version. The short forms and full-length version had similar correlation coefficients with Negative Personal Impact and Positive Personal Impact measures. Two of the five domains of the 10-item version had Cronbach's alpha ≤0.50 and test-retest reliability ≤0.65. A 15-item version of the scale with two to four items per domain performed satisfactorily in all aspects evaluated. CONCLUSION: A 15-item short form of the SCQOLS (SCQOLS-15) is valid and reliable for the assessment of the overall and domain-specific quality of life of family caregivers. A 10-item short form (SCQOLS-10) may serve as a quick, valid and reliable assessment of the overall level of quality of life.

Development and evaluation of a quality of life measurement scale in English and Chinese for family caregivers of patients with advanced cancers.

BACKGROUND: The quality of life of family caregivers of patients with advanced cancers is an important concern in oncology care. Yet, there are few suitable measurement scales available for use in Asia. This study aims to develop and evaluate a locally derived measurement scale in English and Chinese to assess the quality of life of family caregivers of patients with advanced cancers in Singapore. METHODS: Scale contents were generated from qualitative research that solicited inputs from family caregivers. Six hundred and twelve family caregivers of patients with advanced cancers were recruited, of whom 304 and 308 chose to complete the English and Chinese versions of the quality of life scale, respectively. A follow-up survey was conducted for test-retest reliability assessment. Analyses began with pooling all observations, followed by analyses stratified by language samples and ethnic groups (among English-speaking participants). RESULTS: Factor analysis identified 5 domains of quality of life. The Root Mean Square Error of Approximation was 0.041 and Comparative Fit Index was 0.948. Convergent and divergent validity of the total and domain scores were demonstrated in terms of correlation with the Brief Assessment Scale for Caregiver and its sub-scales and a measure of financial concern; known-group validity was demonstrated in terms of differences between groups defined by patient's performance status. Internal consistency (Cronbach's alpha) of the total and domain scores ranged from 0.86 to 0.93. Test-retest reliability (intraclass correlation coefficient) ranged from 0.74 to 0.89. Separate analyses of the English- and Chinese-speaking samples and ethnic groups gave similar results. CONCLUSION: A new, validated, multi-domain quality of life measurement scale for caregivers of patients with advanced cancers that is developed with inputs from family caregivers is now available in two languages. We call this the Singapore Caregiver Quality Of Life Scale (SCQOLS).

Factors considered in end-of-life care decision making by health care professionals.

AIM: To explore the importance of factors influencing the end-of-life care decision making of health care professionals (HCPs) in Singapore. METHODS: This cross-sectional survey encompassed facets of patient, family, and HCP-related care considerations. In total, 187 questionnaires were distributed to physicians and nurses and had a response rate of 78.6%. RESULTS: The respondents rated patients' wishes (96.6%), their clinical symptoms (93.9%), and patients' beliefs (91.1%) very high. In all, 94.6% of the HCPs would respect a competent patient's wishes over the family's wishes when goals conflict. However, 59.9% of HCPs would abide by the family's wishes when the patient loses capacity even if the patient's previously expressed wishes are known. CONCLUSION: End-of-life care decision making by HCPs appears largely patient centered, although familial determination still wields significant influence with implications for advance care planning.

Should Patients and Family be Involved in "Do Not Resuscitate" Decisions? Views of Oncology and Palliative Care Doctors and Nurses.

BACKGROUND: "Do not resuscitate" (DNR) orders are put in place where cardiopulmonary resuscitation is inappropriate. However, it is unclear who should be involved in discussions and decisions around DNR orders. AIM: The aim was to determine the views of oncology and palliative care doctors and nurses on DNR orders. MATERIALS AND METHODS: A questionnaire survey was conducted on 146 doctors and nurses in oncology and palliative care working within a tertiary specialist cancer center in Singapore. RESULTS: Perceived care differences as a result of DNR determinations led to 50.7% of respondents reporting concerns that a DNR order would mean that the patient received a substandard level of care. On the matter of DNR discussions, majority thought that patients (78.8%) and the next of kin (78.1%) should be involved though with whom the ultimate decision lay differed. There was also a wide range of views on the most appropriate time to have a DNR discussion. CONCLUSIONS: From the viewpoint of oncology and palliative care healthcare professionals, patients should be involved at least in discussing if not in the determination of DNR orders, challenging the norm of familial determination in the Asian context. The varied responses highlight the complexity of decision making on issues relating to the end of life. Thus, it is important to take into account the innumerable bio-psychosocial, practical, and ethical factors that are involved within such deliberations.

What is the role of specialist palliative care in an acute hospital setting? A qualitative study exploring views of patients and carers.

BACKGROUND: Since the medical specialty of palliative medicine was recognized in 1988, the role of hospital specialist palliative care services has been developing, extending to patients who have a life-limiting illness but are not in the terminal phase. AIM: This qualitative study aims to explore patient and carer perspectives of the role of palliative care in the acute hospital setting, with patients not imminently dying. DESIGN: Semi-structured interviews with 12 patients and 10 carers. Data were analysed using framework analysis. SETTING/PARTICIPANTS: Patients recruited were adults who had palliative care input for symptom control or psychological support and were discharged either to general ward care or to home. The family member/friend designated as their carer was also approached to take part. RESULTS: All patients in this study were treated in an acute hospital, described as a bewildering and pressured environment of care. Initial perceptions of palliative care were varied, some interpreting referral as an indication that they were approaching the end of life. However, after palliative care input, patients and carers developed an understanding of their role which they saw as three-fold: physical symptom control, psychological support and a reliable liaison. The theme of cross-cutting interviews was that the palliative care team made time for patients, giving them a sense of value and worth. Feeling their care was a priority and being listened to made palliative care input effective. CONCLUSIONS: These findings will aid continuing development and evaluation of palliative care teams, in the domains of effectiveness as well as patient experience.