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

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

Quality of life and health status of Indonesian women with breast cancer symptoms before the definitive diagnosis

__Objectives__ Breast cancer (BC) is prevalent in low and middle-income countries (LMICs) where the majority of cases are diagnosed in late stages. The aims of this study were: (1) to assess quality of life (QOL) and health status of Indonesian women with BC symptoms before definitive diagnosis; (2) to compare QOL and health status between women with BC symptoms before definitive diagnosis and Indonesian women in general; (3) to evaluate the association between demographic variables (age, residence, social economic status and education level) and QOL within the Indonesian women with BC symptoms before definitive diagnosis. __Methods__ We used WHOQOL-BREF to measure QOL and EQ-5D-5L for health status. Multivariate analysis of covariance (MANCOVA) was used to compare QOL and health status between women with BC symptoms and women from the general Indonesian population in order to control for confounders. Regression analyses were used for testing the association between the demographic variables, QOL, and health status. __Results__ In comparison with the data from the women from the general population (n = 471), the women with BC symptoms (n = 132) reported lower QOL, especially in physical and psychological domains. They also reported more problems in all dimensions of health status. Higher education and monthly income were positively associated with QOL and health status among the women with BC symptoms. __Conclusion__ Before receiving a definitive diagnosis, women who visit hospitals with symptoms of BC, report a lower QOL and health status than women in general. Our results suggest that healthcare providers should provide targeted strategies for women with BC symptoms to improve their QOL

Employing quality control and feedback to the EQ-5D-5L valuation protocol to improve the quality of data collection

Objectives: In valuing health states using generic questionnaires such as EQ-5D, there are unrevealed issues with the quality of the data collection. The aims were to describe the problems encountered during valuation and to evaluate a quality control report and subsequent retraining of interviewers in improving this valuation. Methods: Data from the first 266 respondents in an EQ-5D-5L valuation study were used. Interviewers were trained and answered questions regarding problems during these initial interviews. Thematic analysis was used, and individual feedback was provided. After completion of 98 interviews, a first quantitative quality control (QC) report was generated, followed by a 1-day retraining program. Subsequently individual feedback was also given on the basis of follow-up QCs. The Wilcoxon signed-rank test was used to assess improvements based on 7 indicators of quality as identified in the first QC and the QC conducted after a further 168 interviews. Results: Interviewers encountered problems in recruiting respondents. Solutions provided were: optimization of the time of interview, the use of broader networks and the use of different scripts to explain the project’s goals to respondents. For problems in interviewing process, solutions applied were: developing the technical and personal skills of the interviewers and stimulating the respondents’ thought processes. There were also technical problems related to hardware, software and internet connections. There was an improvement in all 7 indicators of quality after the second QC. Conclusion: Training before and during a study, and individual feedback on the basis of a quantitative QC, can increase the validity of values obtained from generic questionnaires

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

The Indonesian EQ-5D-5L Value Set

Background: The EQ-5D is one of the most used generic health-related quality-of-life (HRQOL) instruments worldwide. To make the EQ-5D suitable for use in economic evaluations, a societal-based value set is needed. Indonesia does not have such a value set. Objective: The aim of this study was to derive an EQ-5D-5L value set from the Indonesian general population. Methods: A representative sample aged 17 years and over was recruited from the Indonesian general population. A multi-stage stratified quota method with respect to residence, gender, age, level of education, religion and ethnicity was utilized. Two elicitation techniques, the composite time trade-off (C-TTO) and discrete choice experiments (DCE) were applied. Interviews were undertaken by trained interviewers using computer-assisted face-to-face interviews with the EuroQol Valuation Technology (EQ-VT) platform. To estimate the value set, a hybrid regression model combining C-TTO and DCE data was used. Results: A total of 1054 respondents who completed the interview formed the sample for the analysis. Their characteristics were similar to those of the Indonesian population. Most self-reported health problems were observed in the pain/discomfort dimension (39.66%) and least in the self-care dimension (1.89%). In the value set, the maximum value was 1.000 for full health (health state ‘11111’) followed by the health state ‘11112’ with value 0.921. The minimum value was −0.865 for the worst state (‘55555’). Preference values were most affected by mobility and least by pain/discomfort. Conclusions: We now have a representative EQ-5D-5L value set for Indonesia. We expect our results will promote and facilitate health economic evaluations and HRQOL research in Indonesia

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