Consulting a traditional healer and negative illness perceptions are associated with non-adherence to treatment in Indonesian women with breast cancer

Objective: The aim of the present study was to test the association between psychosocial factors and delay in uptake of treatment and treatment non-adherence in Indonesian women with breast cancer. Methods: Seventy consecutive patients with breast cancer who were treated at the Hasan Sadikin Hospital in Indonesia were recruited. They completed a demographic form, the non-adherence questionnaire, the Breast Cancer Knowledge Test, the Brief Illness Perception Questionnaire, the Multidimensional Health Locus of Control Scales, the Satisfaction with Cancer Information Profile and the Distress Thermometer. Results: Seventeen (24%) out of 70 patients reported that they had delayed initiating treatment at the hospital, and nine (13%) out of 70 patients had missed two or more consecutive treatment sessions. In the bivariate analyses, we found no significant differences on any of the psychological variables between patients who delayed initiating treatment and those patients who did not, whereas patients who had missed two or more consecutive sessions had lower satisfaction with the type and timing of information provided and more negative illness perceptions than patients who had not missed their sessions. In multivariate regression analyses, consulting a traditional healer before diagnosis was associated with treatment delay (β = 1.27, p = 0.04). More negative illness perceptions (β = 0.10, p = 0.02) and whether a traditional healer had been consulted after diagnosis (β = 1.67, p = 0.03) were associated with missing treatment sessions. Conclusions: Indonesian health professionals need to be aware of patients' negative illness perceptions and their unrealistic belief in traditional healers

Psychosocial and cultural reasons for delay in seeking help and nonadherence to treatment in Indonesian women with breast cancer: A qualitative study.

Objective: The aim of this study was to explore reasons for delay in seeking medical help and nonadherence to treatment in Indonesian women with breast cancer. Method: Semistructured interviews were conducted by purposive sampling, using a consecutive sample of 50 breast cancer patients who were treated at the Outpatient Surgical Oncology Clinic of Hasan Sadikin Hospital in Bandung, Indonesia. Interviews were recorded, transcribed verbatim, and coded using qualitative software. Codes were merged into main themes that were subsequently mapped onto the study's aim. Results: Eight main themes concerning reasons for delay in seeking medical help and treatment nonadherence emerged, namely: lack of awareness and knowledge, cancer beliefs, treatment beliefs, financial problems, emotional burden, severe side effects, paternalistic style of communication, and unmet information needs. Conclusion: This study has identified several modifiable psychosocial and cultural factors related to delay in seeking help and nonadherence to treatment in breast cancer patients. We suggest that the provision of extensive information through media campaigns, treatment decision aids, and caregiver and patient education are needed to change the illness behaviors of Indonesian breast cancer patients. © 2013 American Psychological Association

A protocol for a cluster-randomized controlled trial of a self-help psycho-education programme to reduce diagnosis delay in women with breast cancer symptoms in Indonesia

Background: Breast cancer (BC) is the most frequent cancer occurring in women across the world. Its mortality rate in low-middle income countries (LMICs) is higher than in high-income countries (HICs), and in Indonesia BC is the leading cause of cancer deaths among women. Delay in breast cancer diagnosis negatively impacts cancer prognosis. Only about 30% of patients who come to the hospital to check on their breast abnormalities, continue thorough examination to biopsy to get a diagnosis based on the results of anatomical pathology. Many Indonesian women with breast cancer were already in an advanced stage when starting treatment. Therefore, delay in diagnosis is a serious problem that needs to be addressed. The present study will investigate whether our newly developed self-help psycho-educational programme, "PERANTARA", for women with breast cancer symptoms is effective to reduce patient diagnosis delay in Indonesia. Methods: A cluster-randomized controlled trial will be conducted in 106 patients in four hospitals in Bandung, West Java, Indonesia. Data will be collected at baseline (pre-assessment), 7 days after the intervention (post-assessment), and at 3months (follow-up assessments). The primary outcome is delay in diagnosis and treatment. Secondary outcomes are breast cancer knowledge, anxiety and depression, and quality of life. Exploratively, adherence with treatment will be measured too. Data will be analysed by hierarchical linear modelling (HLM) to assess differential change over time. Discussion: If proven effective, PERANTARA will be evaluated and implemented in a diversity of settings for local cares (such as in POSYANDU, PUSKESMAS) that provide health education/psycho-education for women with breast symptoms. Trial registration: ISRCTN1257073

A self-help intervention for reducing time to diagnosis in Indonesian women with breast cancer symptoms

Objective: We investigated the effectiveness of a self-help intervention named PERANTARA, which aims to improve adherence to diagnostic procedures among women with breast cancer (BC) symptoms to reduce the time to a definitive diagnosis. Methods: With a cluster randomized crossover design across four hospitals, PERANTARA and treatment as usual (TAU) or TAU only was provided at successive periods in a randomly determined order. The main outcome was the time between the first medical consultation and the definitive diagnosis. Secondary outcomes were BC knowledge, measured by the Breast Cancer Knowledge Test (BCKT); symptoms of anxiety and depression, measured by the Hospital Anxiety and Depression Scale (HADS); quality of life, measured by the World Health Organization Quality of Life-BREF (WHOQOL-BREF); and health status, measured by the EQ-5D-5L. A linear mixed model analysis was conducted to analyse the outcomes. Results: We recruited 132 women with BC symptoms from four hospitals; 67 participants were in the intervention group, and 65 participants were in the control group. PERANTARA reduced the time to definitive diagnosis by 13.3 days (M [SD]: 25.90 [23.20] in the intervention group vs 39.29 [35.10] in the control group

Whole-genome sequencing reveals host factors underlying critical COVID-19

Critical COVID-19 is caused by immune-mediated inflammatory lung injury. Host genetic variation influences the development of illness requiring critical care1 or hospitalization2,3,4 after infection with SARS-CoV-2. The GenOMICC (Genetics of Mortality in Critical Care) study enables the comparison of genomes from individuals who are critically ill with those of population controls to find underlying disease mechanisms. Here we use whole-genome sequencing in 7,491 critically ill individuals compared with 48,400 controls to discover and replicate 23 independent variants that significantly predispose to critical COVID-19. We identify 16 new independent associations, including variants within genes that are involved in interferon signalling (IL10RB and PLSCR1), leucocyte differentiation (BCL11A) and blood-type antigen secretor status (FUT2). Using transcriptome-wide association and colocalization to infer the effect of gene expression on disease severity, we find evidence that implicates multiple genes—including reduced expression of a membrane flippase (ATP11A), and increased expression of a mucin (MUC1)—in critical disease. Mendelian randomization provides evidence in support of causal roles for myeloid cell adhesion molecules (SELE, ICAM5 and CD209) and the coagulation factor F8, all of which are potentially druggable targets. Our results are broadly consistent with a multi-component model of COVID-19 pathophysiology, in which at least two distinct mechanisms can predispose to life-threatening disease: failure to control viral replication; or an enhanced tendency towards pulmonary inflammation and intravascular coagulation. We show that comparison between cases of critical illness and population controls is highly efficient for the detection of therapeutically relevant mechanisms of disease

Health Locus of Control in Indonesian Women with Breast Cancer: a Comparison with Healthy Women

The aims of this study were to assess whether Indonesian women with breast cancer havea higher external health locus of control (HLC) than healthy women, and to explore the association between HLC and symptoms of anxiety and depression. In this study, 120 consecutive women with breast cancer were recruited at the outpatient surgical oncology clinic at the Hasan Sadikin Hospital in Bandung. One hundred and twenty two healthy women were recruited from the Bandung area as controls. A standard demographic form, Form C of the Multidimensional Health Locus of Control, as well as the Hospital Anxiety and Depression Scale and patients' medical records were used. Data were analyzed using descriptive statistics, t-test, Pearson's correlation, MANOVA and multiple linear regressions. Women with breast cancer had higher scores on all external HLC subscales, i.e. chance, doctor, powerful others and God, and lower internal HLC compared to healthy women. High God LHC scores were associated with a high level of anxiety (β=0.21, p < 0.05), whereas none of the HLC subscales were associated with depression. Our results suggest that women with breast cancer tend to have high external HLC, while healthy women tend to have high internal HLC. A strong belief in an external source of control, i.e. God, might be negatively associated with patient emotional adjustment. Further research is needed to give an insight into the direction of this association

Satisfaction with information and its association with illness perception and quality of life in Indonesian breast cancer patients

Purpose: The aims of this study were to assess the level of satisfaction with the information on illness and treatment among breast cancer patients, to explore its association with patients' illness perceptions and quality of life, and to provide recommendations for improvement of the information provided. Methods: Seventy breast cancer patients at the Outpatient Surgical Oncology Clinic in Hasan Sadikin Hospital in Indonesia were recruited consecutively in a cross-sectional study design. They completed a demographic form, the Satisfaction with Cancer Information Profile, the Brief Illness Perception Questionnaire, and the World Health Organization Quality of Life. Results: A considerable number of breast cancer patients (41-86 %) were dissatisfied with the amount and content of the information they received, particularly on the information about access to patient support groups and the impact of their treatment on long-term quality of life. The majority of patients were dissatisfied with the amount of written information provided. Patients who were satisfied with the type and timing of information received had stronger beliefs in personal control (β = -0.30, p < 0.05), lesser concerns about their health condition (β = -0.47, p < 0.01), and better understanding of their illness (β = -0.27, p < 0.05), and were less emotionally affected by their illness (β = -0.27, p < 0.05). In addition, the satisfied patients had a more positive perception of their general health (β = 0.31, p < 0.05) and better psychological health condition (β = 0.33, p < 0.05). Conclusions: Satisfaction with the information provided is associated with better health outcomes, including more positive illness perceptions. This study appears to highlight the importance of providing adequate and sufficient information that meets the needs of patients. © 2013 Springer-Verlag Berlin Heidelberg

Satisfaction with information and its association with illness perception and quality of life in Indonesian breast cancer patients

Purpose: The aims of this study were to assess the level of satisfaction with the information on illness and treatment among breast cancer patients, to explore its association with patients' illness perceptions and quality of life, and to provide recommendations for improvement of the information provided. Methods: Seventy breast cancer patients at the Outpatient Surgical Oncology Clinic in Hasan Sadikin Hospital in Indonesia were recruited consecutively in a cross-sectional study design. They completed a demographic form, the Satisfaction with Cancer Information Profile, the Brief Illness Perception Questionnaire, and the World Health Organization Quality of Life. Results: A considerable number of breast cancer patients (41-86 %) were dissatisfied with the amount and content of the information they received, particularly on the information about access to patient support groups and the impact of their treatment on long-term quality of life. The majority of patients were dissatisfied with the amount of written information provided. Patients who were satisfied with the type and timing of information received had stronger beliefs in personal control (β = -0.30, p < 0.05), lesser concerns about their health condition (β = -0.47, p < 0.01), and better understanding of their illness (β = -0.27, p < 0.05), and were less emotionally affected by their illness (β = -0.27, p < 0.05). In addition, the satisfied patients had a more positive perception of their general health (β = 0.31, p < 0.05) and better psychological health condition (β = 0.33, p < 0.05). Conclusions: Satisfaction with the information provided is associated with better health outcomes, including more positive illness perceptions. This study appears to highlight the importance of providing adequate and sufficient information that meets the needs of patients. © 2013 Springer-Verlag Berlin Heidelberg

Whole-genome sequencing reveals host factors underlying critical COVID-19

Altres ajuts: Department of Health and Social Care (DHSC); Illumina; LifeArc; Medical Research Council (MRC); UKRI; Sepsis Research (the Fiona Elizabeth Agnew Trust); the Intensive Care Society, Wellcome Trust Senior Research Fellowship (223164/Z/21/Z); BBSRC Institute Program Support Grant to the Roslin Institute (BBS/E/D/20002172, BBS/E/D/10002070, BBS/E/D/30002275); UKRI grants (MC_PC_20004, MC_PC_19025, MC_PC_1905, MRNO2995X/1); UK Research and Innovation (MC_PC_20029); the Wellcome PhD training fellowship for clinicians (204979/Z/16/Z); the Edinburgh Clinical Academic Track (ECAT) programme; the National Institute for Health Research, the Wellcome Trust; the MRC; Cancer Research UK; the DHSC; NHS England; the Smilow family; the National Center for Advancing Translational Sciences of the National Institutes of Health (CTSA award number UL1TR001878); the Perelman School of Medicine at the University of Pennsylvania; National Institute on Aging (NIA U01AG009740); the National Institute on Aging (RC2 AG036495, RC4 AG039029); the Common Fund of the Office of the Director of the National Institutes of Health; NCI; NHGRI; NHLBI; NIDA; NIMH; NINDS.Critical COVID-19 is caused by immune-mediated inflammatory lung injury. Host genetic variation influences the development of illness requiring critical care or hospitalization after infection with SARS-CoV-2. The GenOMICC (Genetics of Mortality in Critical Care) study enables the comparison of genomes from individuals who are critically ill with those of population controls to find underlying disease mechanisms. Here we use whole-genome sequencing in 7,491 critically ill individuals compared with 48,400 controls to discover and replicate 23 independent variants that significantly predispose to critical COVID-19. We identify 16 new independent associations, including variants within genes that are involved in interferon signalling (IL10RB and PLSCR1), leucocyte differentiation (BCL11A) and blood-type antigen secretor status (FUT2). Using transcriptome-wide association and colocalization to infer the effect of gene expression on disease severity, we find evidence that implicates multiple genes-including reduced expression of a membrane flippase (ATP11A), and increased expression of a mucin (MUC1)-in critical disease. Mendelian randomization provides evidence in support of causal roles for myeloid cell adhesion molecules (SELE, ICAM5 and CD209) and the coagulation factor F8, all of which are potentially druggable targets. Our results are broadly consistent with a multi-component model of COVID-19 pathophysiology, in which at least two distinct mechanisms can predispose to life-threatening disease: failure to control viral replication; or an enhanced tendency towards pulmonary inflammation and intravascular coagulation. We show that comparison between cases of critical illness and population controls is highly efficient for the detection of therapeutically relevant mechanisms of disease