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1.
JAMA Netw Open ; 7(4): e245866, 2024 Apr 01.
Artigo em Inglês | MEDLINE | ID: mdl-38602677

RESUMO

Importance: Understanding goals of care for terminally ill patients at the end of life is crucial to ensure that patients receive care consistent with their preferences. Objectives: To 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 Participants: This 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 Measures: Goals 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. Results: This 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 Relevance: In 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.


Assuntos
Cuidadores , Neoplasias , Masculino , Humanos , Feminino , Pessoa de Meia-Idade , Estudos de Coortes , Estudos Prospectivos , Neoplasias/terapia , Planejamento de Assistência ao Paciente
2.
Palliat Support Care ; : 1-7, 2024 Mar 07.
Artigo em Inglês | MEDLINE | ID: mdl-38450453

RESUMO

BACKGROUND AND OBJECTIVES: Advanced cancer patients' understanding of their illness is key for making informed treatment decisions. Despite the known importance of patients' awareness of their disease prognosis, it is debatable whether this awareness is positively, negatively, or not associated with clinical and psychological outcomes among patients with advanced cancer. This paper aims to determine the prevalence of and factors associated with prognostic awareness and its association with quality of life (QoL), spiritual well-being, pain control, and psychological distress in patients with advanced cancer in Indonesia. METHODS: This cross-sectional questionnaire-based survey was part of a multicountry study titled "Asian Patient Perspectives Regarding Oncology Awareness, Care and Health (APPROACH)." Patients were asked what they knew about their cancer and treatment. QoL and spiritual well-being were measured using the Functional Assessment of Cancer Therapy - General (FACT-G) and Functional Assessment of Chronic Illness Therapy - Spiritual Well-being (FACIT-Sp) questionnaire. Psychological distress experienced by patients was recorded via the Hospital Anxiety and Depression Scale. Pain severity was also assessed. Data from 160 patients were analyzed using descriptive statistics and multivariable regression models. RESULTS: Of the 160 patients who participated, 55 (34.4%) were unaware of their cancer stage. Those who were aware of their stage of cancer were younger than those who were not aware (45.7 years vs 50.4 years, p = .015). There was no significant difference in spiritual well-being and other domains of QoL between those who were aware and those who were not aware of their advanced cancer stage. There was also no significant difference in anxiety depression or pain severity, even after adjustment for demographic and clinical characteristics. SIGNIFICANT OF RESULTS: Given the high prevalence of patients who wrongly thought their cancer was curable, more could be done to improve disease and prognostic understanding among patients with advanced cancer in Indonesia. Those who were aware of their advanced cancer stage did not have a poorer QoL, nor did they have more anxiety or depression than those who were unaware. This finding suggests that concerns about the negative impact of prognostic disclosure may be unfounded.

3.
Palliat Support Care ; 22(2): 243-250, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-37016929

RESUMO

OBJECTIVES: The article aims to investigate the feasibility, acceptability, and initial efficacy of a short-term 3-day art therapy group for children who have experienced parental death to cancer. METHODS: The study utilized a pretest-posttest design and included children (n = 20) aged 7-12 years. The feasibility of the intervention was measured by recruitment ability, study compliance, and intervention adherence, while acceptability was assessed using a child-reported satisfaction survey. Efficacy was examined using the child-reported Pediatric Quality of Life Inventory (PedsQL), while the emotional, social, and behavioral functioning of children was measured using the parent-reported Strengths and Difficulties Questionnaire. Paired sample t-tests were used for analyses. RESULTS: The intervention was found to be feasible (80% recruitment rate and 100% session adherence). Acceptability was high, and all participants were satisfied and found the intervention to be helpful. While results did not reach statistical significance, improvements in psychosocial and physical quality of life were reported by all the children post-intervention and at the 3-month follow-up. Parent-reported a decrease in behavioral difficulties scores and an increase in prosocial behavior scores at post-intervention and at the 3-month follow-up. SIGNIFICANCE OF RESULTS: The 3-day art therapy group intervention was shown to be feasible to conduct and acceptable to the recipients. The intervention shows promise in improving post-death adjustment and quality of life outcomes of children bereaved by parental death due to cancer that were maintained after 3 months. The use of art therapy groups to ameliorate difficulties associated with parental loss and to assist children in coping day-to-day difficulties should be further investigated.


Assuntos
Neoplasias , Morte Parental , Humanos , Projetos Piloto , Qualidade de Vida/psicologia , Singapura , Pais/psicologia , Neoplasias/terapia
4.
Palliat Support Care ; : 1-7, 2023 Dec 06.
Artigo em Inglês | MEDLINE | ID: mdl-38053407

RESUMO

OBJECTIVES: The deathbed symbolizes a time when the patient is dangerously ill and where death is imminent. The memories of family caregivers during this time can potentially shape their meaning-making of the patient's death and bereavement adjustment. We aimed to understand the experiences of family caregivers at the deathbed of patients receiving palliative care. We also examined caregiver's meaning-making that occurred after the patient's death. METHODS: In this retrospective qualitative study, family caregivers of cancer patients who received palliative care in Singapore were recruited through purposive sampling. In-person, semi-structured interviews were individually conducted with study participants to understand their experiences from a caregiver's perspective before and after the death of the patient. Thematic content analysis method was conducted. RESULTS: A total of 25 bereaved family caregivers were interviewed, with spouses, adult children, and others comprising one-third each of the sample. Six themes emerged from caregivers' recollected experiences around the patient deathbed: Lasting image of the patient, A time of intense emotions, Healthcare providers prepare caregivers, A time for saying goodbye, Rituals provide comfort, and Impact on family ties. Four themes emerged surrounding post-loss meaning-making: An end to the pain and suffering, "Have I done enough?," Significance in the timing of events, and Gaining strength and personal growth. SIGNIFICANCE OF RESULTS: The deathbed is a salient time for family caregivers as they prepare for patient's death. There are opportunities to provide support to the family based on the study findings.

5.
Patient ; 16(5): 485-495, 2023 09.
Artigo em Inglês | MEDLINE | ID: mdl-37341962

RESUMO

PURPOSE: To evaluate the measurement properties of the 15-item Singapore Caregiver Quality of Life Scale (SCQOLS-15) in family caregivers of patients with heart diseases. METHODS: The SCQOLS-15 survey was self-administered by family caregivers of patients with chronic heart diseases, at baseline and 1 week later. The criterion validity of SCQOLS-15 and its domain scores was assessed by calculating the Spearman correlation coefficient (ρ) with the Brief Assessment Scale for Caregivers (BASC), Caregiver Reaction Assessment (CRA), and their sub-scores. Known-group validity was assessed using the New York Heart Association (NYHA) functional class. Test-retest reliability was evaluated using the intraclass correlation coefficient (ICC). RESULTS: Of the 327 caregivers included, 65% were adult children and 28% were spouses. The distribution of NYHA classes of the patients was I: 27%, II: 40%, III: 24%, and IV: 9%. There was a positive correlation between the SCQOLS-15 and BASC total scores (ρ = 0.7). SCQOLS-15 domain scores were also correlated with BASC and CRA sub-scores as per a priori hypotheses, with absolute values of ρ ranging from 0.4 to 0.6. The mean values of SCQOLS-15 total and all domain scores were lower among caregivers of patients with NYHA class III/IV compared to those of class I/II patients (each P < 0.05). Among 146 caregivers who completed the follow-up and self-rated a stable quality-of-life, ICCs for test-retest reliability of SCQOLS-15 total and all domain scores were ≥ 0.8. CONCLUSION: The SCQOLS-15 is a valid and reliable instrument for measuring the quality of life in caregivers of heart disease patients.


Assuntos
Cuidadores , Cardiopatias , Qualidade de Vida , Humanos , Inquéritos e Questionários , Psicometria , Singapura , Masculino , Feminino , Adulto , Pessoa de Meia-Idade , Reprodutibilidade dos Testes
6.
Palliat Med ; 37(9): 1379-1388, 2023 10.
Artigo em Inglês | MEDLINE | ID: mdl-37132995

RESUMO

BACKGROUND: Despite the diagnosis of life-limiting foetal conditions, some mothers choose to continue their pregnancies. The experiences of these individuals are relatively unknown, making it difficult for perinatal palliative services to be targeted towards their needs. AIM: To examine maternal experiences in perinatal palliative care among those who choose to continue their pregnancies despite life-limiting foetal condition. DESIGN: Qualitative, retrospective study involving semi-structured interviews. Braun & Clarke's reflexive thematic analyses using a constructionist-interpretive approach were conducted. SETTING/PARTICIPANTS: A total of 15 adult women participants who decided to continue their pregnancies after learning of life-limiting foetal diagnoses were recruited from a Singaporean tertiary hospital. Interviews were conducted in-person or via video conferencing. RESULTS: Seven themes were synthesized from the data: (1) Internal upheaval - 'World turns upside down'; (2) Role of religion and spirituality in hope of miracles; (3) Support from family and close friends; (4) Navigating a fragmented healthcare system; (5) Value added by the perinatal palliative service; (6) Goodbye and grieving and (7) No regrets and other personal reflections. CONCLUSIONS: Continuing a pregnancy despite the diagnosis of a life-limiting foetal condition can be challenging for mothers. To better meet their needs during this difficult period, perinatal palliative care must be patient-centred, multidisciplinary and non-judgmental. Efforts must be made to streamline the healthcare delivery process.


Assuntos
Família , Cuidados Paliativos , Adulto , Gravidez , Feminino , Humanos , Estudos Retrospectivos , Diagnóstico Pré-Natal , Pesquisa Qualitativa
7.
Child Adolesc Psychiatry Ment Health ; 17(1): 60, 2023 May 11.
Artigo em Inglês | MEDLINE | ID: mdl-37170138

RESUMO

BACKGROUND: There is evidence that the prevalence of depression and anxiety among youth is increasing and that these factors contribute to high healthcare costs and poor school performance. The goal of this study is to provide up-to-date estimates of the prevalence and economic burden of depression and anxiety among youth in Singapore. METHODS: Using an existing web panel, 991 parents filled out the PHQ-4 screener on behalf of 1,515 youth. 104 of these parents whose children (ages 4 to 21) had symptoms consistent with depression or anxiety filled out a full survey with questions on mental health symptoms, school absences, school performance, and healthcare utilization. The survey was fielded between April and June 2022. Publicly available prices were used to estimate the cost associated with the observed rates of health service use. FINDINGS: Based on parental responses, 11.7% (95% CI:10.2 - 13.5%) of youth had symptoms consistent with depression and 12.8% (95% CI:11.2 - 14.6%) had symptoms consistent with anxiety. In total, 16.2% (95% CI:14.5 - 18.3%) were reported to have symptoms consistent with at least one of these conditions. These youths missed an average of 190 (95% CI: 126-254) hours of school per year due to their mental health conditions and parents reported that school and daily activities performance was significantly degraded. Per capita annual healthcare costs averaged S$10,250 (95% CI: 7,150-13,350), with 64% of youth receiving emergency or inpatient services. In aggregate, annual costs associated with these conditions were estimated to be S$1.2 billion (95% CI:S$1.1bn - S$1.4bn). INTERPRETATION: Even with significant potential for underreporting, these results reveal concerning rates of Singaporean youth with symptoms consistent with depression or anxiety, many of whom remain untreated. Results also reveal the short-term economic burden caused by these symptoms and hint at longer-term consequences resulting from poor school performance. This study should represent a call to action for Singapore to address poor mental health among youth.

8.
Cancer Med ; 12(8): 9956-9965, 2023 04.
Artigo em Inglês | MEDLINE | ID: mdl-36934452

RESUMO

BACKGROUND: Cancer can impact the psychological well-being of both patients and their informal caregivers. We investigated the joint trajectories of psychological distress among Singaporean advanced cancer patients-caregiver dyads. We also examined predictors of trajectory group membership. METHODS: This study utilised data from 299 patients with advanced solid cancer and their caregivers over 33 months (12 times points). Group-based trajectory modelling was used to examine the joint trajectories of patient anxiety, patient depression, caregiver anxiety and caregiver depression scores using the Hospital Anxiety and Depression Scale. RESULTS: Four joint trajectory groups were found: (1) Patient-caregiver low distress (27%), (2) patient-caregiver increasing distress (28.5%), (3) patient low- caregiver borderline distress (25%), (4) patient-caregiver high distress (19.5%). Dyads where the patient is below 50 years of age were more likely to be in Group 4. Dyads where caregiver-patient emotional closeness was low were more likely to be in Groups 2 or 4 where dyads reported increasing/high distress. Dyads that reported financial inadequacy were more likely to be in Groups 2, 3 and 4, while dyads with caregivers who were employed were more likely to be in group 3. CONCLUSIONS: A substantial proportion of patients and caregivers reported anxiety and/or depression that lasted or increased throughout the study duration. We found significant heterogeneity in how dyads experienced psychological distress, suggesting that efforts should consider dyadic differences when providing psychological support. Particular focus should be placed on identifying dyads that are at risk and who require additional support.


Assuntos
Neoplasias , Angústia Psicológica , Humanos , Cuidadores/psicologia , Estudos Prospectivos , Depressão/epidemiologia , Depressão/etiologia , Depressão/psicologia , Neoplasias/terapia , Neoplasias/psicologia , Ansiedade/epidemiologia , Ansiedade/etiologia , Ansiedade/psicologia , Qualidade de Vida/psicologia , Estresse Psicológico/etiologia , Estresse Psicológico/psicologia
9.
Palliat Support Care ; : 1-8, 2023 Mar 30.
Artigo em Inglês | MEDLINE | ID: mdl-36994832

RESUMO

OBJECTIVES: Body image adjustment is a crucial issue for patients with facial cancer, but body image-specific interventions are scarce. We report results of a novel psychotherapeutic intervention to address body image concerns during acute postoperative recovery following facial reconstructive surgery. Our primary aims were to evaluate the intervention's feasibility, acceptability, and efficacy on body image concerns, psychological distress, and quality of life (QOL). METHODS: Adults with facial cancers who endorsed body image concerns were recruited to participate in a randomized controlled trial. The intervention group participated in 4 in-person counseling sessions. The control group received an educational booklet and a brief phone call. Participants completed measures of body image, distress, and QOL at baseline and at the 4-week follow-up to assess the impact of the intervention. Intervention outcomes were assessed with 2 sample t-tests or Mann-Whitney U tests as appropriate. RESULTS: Twenty-nine participants completed both the baseline and follow-up assessments. The intervention demonstrated good feasibility with a high retention rate (79%), visit completion rate (81%), and high satisfaction scores (75% reported mean satisfaction score of >3). Intervention did not result in an observed statistically significant difference in reduction in body image dissatisfaction and disturbance, psychological distress, or improvement in QOL compared with the control group. However, intervention resulted in statistically significant difference in perceived social impact (-1 vs. -8.3, p = 0.033) compared to control group. SIGNIFICANCE OF RESULTS: Our study highlights the potential clinical benefits of a novel psychotherapeutic intervention that targets body image concerns and suggests the need for further evaluation.

10.
Qual Life Res ; 32(8): 2271-2279, 2023 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-36952074

RESUMO

PURPOSE: This study aimed to describe the quality of life (QOL) and psychological distress (anxiety and depression) of Filipino patients with advanced solid cancers and identify sociodemographic and clinical-related factors associated with them. METHODS: 195 patients with advanced cancer were recruited from a major hospital treating cancer patients in the Philippines. Participants completed self-reported surveys on Quality-of-life (QOL-FACT-G) and psychological distress (HADS-D, HADS-A). Multi-variable OLS regression models were performed where sociodemographic, health history and clinical characteristics were included as predictors. RESULTS: The average total FACT-G score was 65.39/108 (Standard deviation (SD) = 13.76), with the physical well-being scale having the lowest scores (M = 14.14/28, SD = 5.92). The two most common symptoms reported were fatigue (88%) and pain (86.5%). Physical symptom burden was significantly negatively associated with QOL and psychological distress. The average HADS-total score was 14.46/21 (SD = 5.77), with 8% with probable anxiety and 27% with probable depression. Participants who reported greater reliance on their spiritual faith for strength in coping with illness reported lower depression scores. CONCLUSIONS: Our findings underline the importance of understanding the multi-dimensional outcomes of Filipino advanced cancer patients. Results may be used to improve QOL and reduce the psychological distress of advanced cancer patients.


Assuntos
Neoplasias , Angústia Psicológica , Humanos , Qualidade de Vida/psicologia , Filipinas , Neoplasias/psicologia , Adaptação Psicológica , Ansiedade/psicologia , Depressão/terapia , Inquéritos e Questionários
11.
BMC Psychiatry ; 23(1): 104, 2023 02 14.
Artigo em Inglês | MEDLINE | ID: mdl-36782116

RESUMO

BACKGROUND: Major depressive disorder (MDD) and generalized anxiety disorder (GAD) are leading causes of disability and premature mortality. At a global level, over 300 million people are estimated to suffer from major depressive disorders, equivalent to 4·4% of the world's population. Pandemic era stressors have increased rates for depression and anxiety by upwards of 25%. The goal of this study is to estimate the prevalence and economic burden of depression and anxiety symptoms in Singapore after the peak of the COVID-19 pandemic. METHODS: An existing web panel was queried between April 2022 and June 2022. Adult participants aged > 21 years old who screened positive for depression and anxiety symptoms based on the Patient Health Questionnaire-4 (PHQ-4) Screener were eligible for participation. Prevalence estimates were quantified by dividing the number of respondents who screened positive for these symptoms by the total number of respondents. Participants who screened positive were asked about healthcare utilization, days missed from work, and reduced productivity due to these symptoms. These values were then monetized and scaled based on prevalence and population counts to generate per capita and total annual costs. RESULTS: Two thousand three hundred forty-eight respondents filled out the PHQ-4 depression/anxiety screener on behalf of the 5,725 adults living in their households (including respondents themselves). Prevalence estimates were calculated based on the responses recorded for these 5,725 adults. 14.1% adults had symptoms consistent with depression and 15.2% had symptoms consistent with anxiety. In total, 20.0% may experience symptoms consistent with at least one of these two conditions, yet approximately half reported never being formally diagnosed. 350 respondents screened positive for depression or anxiety symptoms and thus were eligible to fill out the healthcare utilization, presenteeism, and absenteeism survey. Direct annual healthcare costs due to depression and anxiety symptoms averaged Singapore dollar (SGD) $1,050 for these respondents. The employed subset (n = 304) missed an extra 17.7 days of work on average per year, which translates to SGD $4,980 per worker. These workers also reported being ~ 40% less productive at work, which equates to SGD $28,720 in economic losses annually. In total, these symptoms caused SGD $15.7 billion in increased costs. Presenteeism accounts for 81.6% of this total (SGD $12.8 billion), absenteeism for 14.2% (SGD $2.3 billion) and healthcare accounts for 4.2% (SGD $0.7 billion). CONCLUSIONS: The health and economic burden associated with depression and anxiety symptoms is large in Singapore, representing 2.9% of Singapore's gross domestic product (GDP). Employers and governments should look to identify effective remediation strategies, including strategies to address the high rates of undiagnosed cases. Increasing psychiatric resources, general practitioner mental health competency, access to peer support, and increased efforts to reduce mental health stigma should be considered to address this growing public health crisis.


Assuntos
COVID-19 , Transtorno Depressivo Maior , Adulto , Humanos , Adulto Jovem , Depressão/diagnóstico , Depressão/epidemiologia , Prevalência , Estresse Financeiro , Pandemias , Efeitos Psicossociais da Doença , COVID-19/epidemiologia , Ansiedade/diagnóstico , Ansiedade/epidemiologia
12.
Med Decis Making ; 43(2): 203-213, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-36214321

RESUMO

OBJECTIVE: We investigated the variation in patient-reported decision-making roles in the past year of life among patients with metastatic solid cancer and the associations of these roles with patient quality of life and perceived quality of care. METHODS: We used the last year of life data of 393 deceased patients from a prospective cohort study. Patients reported their decision-making roles, quality of life (emotional well-being, spiritual well-being, and psychological distress) and perceived quality of care (care coordination and physician communication) every 3 months until death. We used mixed effects linear regressions to investigate the associations of decision-making roles with patients' quality of life and perceived quality of care. RESULTS: The most reported roles, on average, were patient-led (37.9%) and joint (23.4%; with physicians and/or family caregivers) decision making, followed by no patient involvement (14.8%), physician/family-led (12.9%), and patient alone (11.0%) decision making. Patient level of involvement in decision making decreased slightly as death approached (P < 0.05). Compared with no patient involvement, joint decision making was associated with better emotional well-being (ß [95% confidence interval] = 1.02 [0.24, 1.81]), better spiritual well-being (1.48 [0.01, 2.95]), lower psychological distress (-1.99 (-3.21, -0.77]), higher perceived quality of care coordination (5.04 [1.24, 8.85]), and physician communication (5.43 [1.27, 9.59]). Patient-led decision making was associated with better spiritual well-being (1.69 [0.24, 3.14]) and higher perceived quality of care coordination (6.87 [3.17, 10.58]) and physician communication (6.21 [2.15, 10.27]). CONCLUSION: Joint and patient-led decision-making styles were reported by 61% of the patients and were associated with better quality of life and quality of care. A decrease in the level of patient involvement over time indicates reliance on family and physicians as death approached. HIGHLIGHTS: Among patients with metastatic cancer, the level of patient involvement in decision making decreased slightly as death approached.Joint decision making of patients with their physicians and/or family caregivers and patient-led decision making were associated with better quality of life and perceived quality of care.Patients with metastatic cancer should be encouraged to be involved in decision making together with their physicians and/or family caregivers to potentially improve their end-of-life experience.


Assuntos
Neoplasias , Qualidade de Vida , Humanos , Estudos Longitudinais , Qualidade de Vida/psicologia , Estudos Prospectivos , Tomada de Decisões , Relações Médico-Paciente , Neoplasias/terapia , Medidas de Resultados Relatados pelo Paciente
13.
Med Decis Making ; 43(2): 191-202, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-36113405

RESUMO

OBJECTIVE: To longitudinally examine caregiver-reported treatment decision-making roles and to investigate the associations of these roles with caregiver burden, caregiving esteem, caregiver anxiety, and depression. METHODS: 281 caregivers of patients with stage IV solid cancers were recruited from outpatient clinics in Singapore. Caregivers were eligible if they were aged ≥21 y, primary informal caregiver, and involved in treatment decision making. We used 3 y of longitudinal data. The decision-making roles were grouped into 4 categories: no family involvement, patient/physician-led, joint, and family-led/alone decision making. Mixed-effects linear regressions were used to assess associations between decision-making roles and caregiver outcomes. RESULTS: On average, 72% of caregivers reported family involvement in decision making. Compared with baseline, a higher proportion of caregivers at the 36-mo follow-up reported no family involvement (from 23% to 34%, P = 0.05) and patient/physician-led decision making (from 22% to 34%, P = 0.02), while a lower proportion reported family-led/alone (from 19% to 7%, P = 0.01) decision making. Compared with family-led/alone decision making, caregivers reporting no family involvement reported lower impact on finances (-0.15 [-0.28, -0.01], P = 0.03) while caregivers who reported patient/physician-led decision making reported lower impact on schedule and health (-0.12 [-0.20, -0.03], P = 0.01), and finances (-0.15 [-0.28, -0.03], P = 0.02), and lower anxiety (-0.69 [-1.17, -0.22], P < 0.01), and depressive symptoms (-0.69 [-1.12, -0.26], P < 0.01). Caregivers who reported joint decision making reported higher caregiving esteem (0.07 [0.01, 0.14], P = 0.02). CONCLUSIONS: Higher family involvement in decision making was associated with higher caregiver burden and psychological distress. Help should be given so that family caregivers can support patient decision-making in a meaningful way. HIGHLIGHTS: Compared with baseline, a lower proportion of caregivers at the 36-mo follow-up reported family-led or family-alone decision making, and a higher proportion of caregivers reported patient-led or physician-led decision making.Higher levels of family involvement in decision making were associated with burdens on caregivers' daily life, health, and finances and increased caregiver anxiety and depression.Support must be given so that family members can contribute to making medical decisions in a rewarding manner.


Assuntos
Neoplasias , Angústia Psicológica , Humanos , Cuidadores/psicologia , Sobrecarga do Cuidador , Depressão , Estresse Psicológico , Estudos Longitudinais , Neoplasias/terapia , Neoplasias/psicologia , Tomada de Decisões
14.
Cancer Med ; 12(4): 4801-4808, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-36200706

RESUMO

BACKGROUND: Little research has examined changes in prognostic awareness (PA) in the last year of life and the extent PA change was associated with anxiety, depression, and spiritual well-being among metastatic cancer patients. METHODS: Two surveys were administered in the last year of life to 176 conveniently sampled Singaporean patients with stage 4 solid cancers. PA was assessed by asking patients whether they were aware that their treatments were unlikely to cure their cancer. Multivariable linear regression models were used to investigate the association of PA change with anxiety, depression, and spiritual well-being. RESULTS: The proportion of patients with accurate PA increased (39.2%-45.5%; p < 0.05) from the second-last assessment to the last assessment before death. Those with inaccurate PA decreased (26.1%-20.4%; p < 0.05) while a third of patients remained uncertain at both assessments (34.7% and 34.1%). Compared to patients with inaccurate PA at both assessments, patients who reported accurate PA at both assessments reported worsened anxiety (ß = 2.08), depression (ß = 3.87), and spiritual well-being (ß = -4.45) while patients who reported being uncertain about their prognosis at both assessments reported worsened spiritual well-being (ß = - 6.30) at the last assessment before death (p < 0.05 for all). CONCLUSIONS: Interventions should dually focus on decreasing prognostic uncertainty at the end-of-life while minimising the psychological and spiritual sequelae associated with being prognostically aware. More research is needed to clarify the causes of prognostic uncertainty.


Assuntos
Neoplasias , Doente Terminal , Humanos , Prognóstico , Doente Terminal/psicologia , Conscientização , Neoplasias/epidemiologia , Neoplasias/terapia , Neoplasias/psicologia , Avaliação de Resultados em Cuidados de Saúde , Qualidade de Vida/psicologia
16.
BMC Palliat Care ; 21(1): 183, 2022 Oct 14.
Artigo em Inglês | MEDLINE | ID: mdl-36242033

RESUMO

BACKGROUND: Patients with advanced cancer prioritise health-related quality of life (HrQoL) in end-of-life care, however an understanding of pre-death HrQoL trajectories is lacking. We aimed to delineate and describe the trajectories of physical, social, emotional and functional HrQoL during last year of life among advanced cancer patients. We assessed associations between these trajectories and patient socio-demographic characteristics, healthcare use and place of death. METHODS: We used data from 345 decedents from a prospective cohort study of 600 patients with a solid advanced cancer receiving secondary care at public hospitals in Singapore. Patients were surveyed every three months until death and HrQoL was assessed using the Functional Assessment of Cancer Therapy - General (FACT-G) questionnaire. Interviews were conducted between July 2016 and December 2019. Group-based multi-trajectory modelling was used to assess potential heterogeneity in the four HrQoL dimensions during patients' last year of life. RESULTS: We identified four distinct trajectories of HrQoL - (1) overall high HrQoL (47% of sample), (2) progressively decreasing HrQoL (32%), (3) asymmetric decline in HrQoL (13%), (4) overall low HrQoL (8%). Compared to patients with secondary or above education, those with primary education or less (ß = 1.39, SE = 0.55, p-value = 0.012) were more likely to have "progressively decreasing HrQoL" or "overall low HrQoL" in contrast to "overall high HrQoL". Compared to patients with 'overall high HrQoL', those with 'overall low HrQoL' had longer length of hospital stay during the last year of life (ß = 0.47, SE = 0.21, p-value = 0.026) and were more likely to die in a hospice/care home (ß = 1.86, SE = 0.66, p-value = 0.005). CONCLUSION: Our results showed heterogeneity in deterioration of HrQoL among patients with advanced cancer in the last year of life. Systematic monitoring of HrQoL, early identification and referral of high-risk patients to palliative care may provide timely relief and mitigate the steep decline in their HrQoL. TRIAL REGISTRATION: NCT02850640.


Assuntos
Neoplasias , Assistência Terminal , Humanos , Neoplasias/psicologia , Neoplasias/terapia , Cuidados Paliativos/métodos , Estudos Prospectivos , Qualidade de Vida/psicologia , Inquéritos e Questionários , Assistência Terminal/métodos
17.
J Pain Res ; 15: 2949-2956, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36147456

RESUMO

Background: Despite medical advancements, pain is a major source of suffering at the end of life for patients with a solid metastatic cancer. We aimed to assess the trajectory of pain prevalence, severity, interference, and inadequacy of analgesia during the last year of life. Methods: We analysed data from the last year of life of 345 decedents from a prospective cohort study of 600 patients with a solid metastatic cancer in Singapore. Patients were surveyed every 3 months and their pain outcomes (prevalence, severity, and interference) and inadequacy of analgesia were analysed. We used mixed-effects regressions to assess the association of pain outcomes with patients' time from death, demographics, and planned or unplanned hospitalisations. Results: Prevalence of pain was higher in the last 2 months (65%) compared to 11 to 12 months (41%) before death. Pain severity and interference scores (mean ± SD) were also higher in the last month (severity: 2.5±2.6; interference: 2.6±3.0) compared to 12 months before death (severity: 1.4±2.0; interference: 1.4±2.0). At any time during the last year of life, 38% of the patients were prescribed non-steroidal anti-inflammatory drugs, 11% were prescribed weak-opioids and 29% were prescribed strong opioids. These analgesics were prescribed through either oral, topical or injectable route. Pain outcomes were significantly worse (p-value<0.05) for younger patients, those with higher education, and more financial difficulties, while interference was higher after an unplanned hospitalisation in the last month. Females reported higher pain severity score during their last year of life compared to males. For patients reporting moderate to severe pain, inadequacy of analgesia was lower in the last 2 months (43%) compared to 11 to 12 months before death (83%). Conclusion: Findings highlight the need for greater attention in monitoring and treatment of pain even earlier in the disease trajectory, and increased attention to patients discharged from an unplanned hospitalisation.

18.
Mindfulness (N Y) ; 13(11): 2691-2704, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36160038

RESUMO

Objectives: Amidst the COVID-19 pandemic, healthcare workers (HCWs) may be at greater risk of suffering from psychological distress compared to the general population. This study aimed to investigate the effects of mindfulness practice as delivered using Headspace on psychological and cognitive outcomes among HCWs in Singapore. Methods: A total of 80 HCWs were recruited and randomly assigned to engage in either 3 weeks (10 min/day) of mindfulness practice using Headspace or an active control condition (Lumosity; involving playing cognitive games). Participants were administered several self-report measures and two working memory (digit span) tasks at pre- and post-intervention, and one-month follow-up. Results: There were no significant between-condition changes on any outcome variables from pre- to post-intervention. From pre-intervention to 1-month follow-up, there were significantly greater improvements among Headspace participants on fear of COVID-19 (p = .005), compassion satisfaction (p = .007), trait mindfulness (p = .002), self-compassion (p = .005), sleep quality (p = .002), and the forward digit span task (p < .001). Several outcomes were mediated by increases in trait mindfulness or self-compassion. Conclusions: Use of Headspace may lead to downstream benefits in reducing distress and improving psychological health outcomes among HCWs. The findings have implications for improving psychological support resources for HCWs amidst a pandemic. Trial Registration: ClinicalTrials.gov (Identifier: NCT04936893).

19.
J Nurs Manag ; 30(7): 2585-2596, 2022 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-36150900

RESUMO

BACKGROUND: Nurses' burnout and psychological well-being are a significant concern during the pandemic. AIMS: The aim of this study is to (i) examine the level of burnout, anxiety, depression, perceived stress and self-rated health for nurses at two time-points, 2020 and 2021, and (ii) examine the socio-demographic characteristics, work-related factors and perceived workplace support factors in relation to the level of burnout. METHODS: This is a cross-sectional study with a longitudinal approach. A convenience sample of registered nurses who worked in an acute care tertiary hospital in Singapore were surveyed during two time-points. Participants' health, socio-demographic characteristics, work-related factors and perceived workplace support factors were collected. RESULTS: Among the 179 nurses, there was a significant increase in burnout level, poorer self-rated health and reduced job dedication. A decrease in the percentage of nurses who felt appreciated at work was reported in 2021 (p = 0.04). Nurses who felt their team was not working well together were 3.30 times more likely to experience burnout (95% CI 1.12 to 9.69; p = 0.03). Nurses who reported that they never felt appreciated by their department/hospital were 8.84 times more likely to experience burnout (95% CI 2.67 to 29.21; p < 0.001). Nurses with poorer self-rated health were more likely to report burnout (95% CI: 1.32-6.03; p = 0.008). CONCLUSION: Nurses had an increased experience of burnout, reduced job dedication and poorer self-rated health after the outbreak. IMPLICATIONS FOR NURSING MANAGEMENT: Interventions at the departmental and organizational levels are needed to improve the workplace support. Strategies to support nurses' psychological well-being during the aftermath of COVID-19 are vital to managing nurses' burnout and improving job dedication and self-rated health.


Assuntos
Esgotamento Profissional , COVID-19 , Enfermeiras e Enfermeiros , Recursos Humanos de Enfermagem Hospitalar , Humanos , Satisfação no Emprego , Recursos Humanos de Enfermagem Hospitalar/psicologia , COVID-19/epidemiologia , Estudos Transversais , Esgotamento Profissional/psicologia , Inquéritos e Questionários
20.
Artigo em Inglês | MEDLINE | ID: mdl-35681966

RESUMO

OBJECTIVES: This study examined the prevalence of anxiety, depression, and job burnout among frontline healthcare workers (HCWs) across six Southeast Asian countries (Indonesia, Malaysia, Philippines, Singapore, Thailand, Vietnam) during the COVID-19 pandemic in 2021. We also investigated the associated risk and protective factors. METHODS: Frontline HCWs (N = 1381) from the participating countries participated between 4 January and 14 June 2021. The participants completed self-reported surveys on anxiety (GAD-7), depression (PHQ-8), and job burnout (PWLS). Multivariate logistic regressions were performed with anxiety, depression, and job burnout as outcomes and sociodemographic and job characteristics and HCW perceptions as predictors. RESULTS: The average proportion of HCWs reporting moderate anxiety, moderately severe depression, and job burnout across all countries were 10%, 4%, and 20%, respectively. Working longer hours than usual (Odds ratio [OR] = 1.82; 3.51), perceived high job risk (1.98; 2.22), and inadequate personal protective equipment (1.89; 2.11) were associated with increased odds of anxiety and job burnout while working night shifts was associated with increased risk of depression (3.23). Perceived good teamwork was associated with lower odds of anxiety (0.46), depression (0.43), and job burnout (0.39). CONCLUSION: Job burnout remains a foremost issue among HCWs. Potential opportunities to improve HCW wellness are discussed.


Assuntos
Esgotamento Profissional , COVID-19 , Ansiedade/epidemiologia , Ansiedade/psicologia , Esgotamento Profissional/epidemiologia , Esgotamento Profissional/psicologia , COVID-19/epidemiologia , Depressão/epidemiologia , Depressão/psicologia , Pessoal de Saúde/psicologia , Humanos , Pandemias , Equipamento de Proteção Individual , SARS-CoV-2
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