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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

__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.

Background: People living on the banks of polluted rivers with yearly flooding lived in impoverished and physically unhealthy circumstances. However, they were reluctant to move or be relocated to other locations where better living conditions were available. This study aimed to investigate the health status, quality of life (QoL), happiness, and life satisfaction of the people who were living on the banks of one of the main rivers in Jakarta, Indonesia, the Ciliwung. Methods: Respondents were 17 years and older and recruited from the Bukit Duri community (n = 204). Three comparison samples comprised: i) a socio-demographically matched control group, not living on the river bank (n = 204); ii) inhabitants of Jakarta (n = 305), and iii) the Indonesian general population (n = 1041). Health status and QoL were measured utilizing EQ-5D-5L, WHOQOL-BREF, the Happiness Scale, and the Life Satisfaction Index. A visual analogue scale question concerning respondents' financial situations was added. MANOVA and multivariate regression analysis were used to analyze the differences between the Ciliwung respondents and the three comparison groups. Results: The Ciliwung respondents reported lower physical QoL on WHOQOL-BREF and less personal happiness than the matched controls but rated their health (EQ-5D-5L) and life satisfaction better than the matched controls. Similar results were obtained by comparison with the Jakarta inhabitants and the general population. Bukit Duri inhabitants also perceived themselves as being in a better financial situation than the three comparison groups even though their incomes were lower. Conclusions: The recent relocation to a better environment with better housing might improve the former Ciliwung inhabitants' quality of life and happiness, but not necessarily their perceived health, satisfaction with life, and financial situations.

Objectives The objective of this study is to obtain population norms and to assess test-retest reliability of EQ-5D-5L and WHOQOL-BREF for the Indonesian population. Methods A representative sample of 1056 people aged 17–75 years was recruited from the Indonesian general population. We used a multistage stratified quota sampling method with respect to residence, gender, age, education level, religion and ethnicity. Respondents completed EQ-5D-5L and WHOQOL-BREF with help from an interviewer. Norms data for both instruments were reported. For the test-retest evaluations, a sub-sample of 206 respondents completed both instruments twice. Results The total sample and test-retest sub-sample were representative of the Indonesian general population. The EQ-5D-5L shows almost perfect agreement between the two tests (Gwet’s AC: 0.85–0.99 and percentage agreement: 90–99%) regarding the five dimensions. However, the agreement of EQ-VAS and index scores can be considered as poor (ICC: 0.45 and 0.37 respectively). For the WHOQOL-BREF, ICCs of the four domains were between 0.70 and 0.79, which indicates moderate to good agreement. For EQ-5D-5L, it was shown that female and older respondents had lower EQ-index scores, whilst rural, younger and higher-educated respondents had higher EQ-VAS scores. For WHOQOL-BREF: male, younger, higher-educated, high-income respondents had the highest scores in most of the domains, overall quality of life, and health satisfaction. Conclusions This study provides representative estimates of self-reported health status and quality of life for the general Indonesian population as assessed by the EQ-5D-5L and WHOQOL-BREF instruments. The descriptive system of the EQ-5D-5L and the WHOQOL-BREF have high test-retest reliability while the EQ-VAS and the index score of EQ-5D-5L show poor agreement between the two tests. Our results can be useful to researchers and clinicians who can compare their findings with respect to these concepts with those of the Ind

Background: There is a need for data on children's self-reported discomfort in clinical research, helping ethics committees to make their evaluation of discomfort described in study protocols evidence-based. Since there is no appropriate instrument to measure children's discomfort during medical research procedures, we aimed to develop a generic, short and child-friendly instrument: the DISCO-RC questionnaire (DISCOmfort in Research with Children). Methods: This article describes the six steps of the development of the DISCO-RC. First, we updated a literature search on children's self-reported discomfort in clinical research to get insight in what words are used to measure discomfort (step 1). Subsequently, we interviewed 46 children (6-18years) participating in research to get insight into important forms of discomfort for children (step 2), and asked them about their preferred response option for measuring discomfort (step 3). Next, we consulted nine paediatric research professionals from various backgrounds for input on the content and feasibility of the DISCO-RC (step 4). Based on the previous steps, we developed a draft version of the DISCO-RC, which we discussed with the professionals. The DISCO-RC was then pretested in 25 children to ensure face-validity from the child's perspective and feasibility (step 5). Finally, validity, reliability and internal consistency were tested (step 6). Results: The search-update revealed several words used for measuring discomfort in research (e.g. 'worries', 'unpleasantness'). The interviews gave insight into important forms of discomfort for children in research (e.g. 'pain', 'boredom'). Children preferred a 5-point Likert scale as response option for the DISCO-RC. The experts recommended a short, digital instrument involving different forms of discomfort, and measuring discomfort of individual research procedures. Pretesting of the DISCO-RC resulted in a few layout changes, and feedback from the children confirmed the feasi

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.

Objective Stressors have been related to medically insufficiently explained or functional somatic symptoms (FSS). However, the underlying mechanism of this association is largely unclear. In the current study, we examined whether FSS are associated with different perceived stress and cardiac autonomic nervous system (ANS) levels during a standardized stressful situation, and whether these associations are symptom-specific. Methods We examined 715 adolescents (16.1 years, 51.3% girls) from the Dutch cohort study Tracking Adolescents' Individual Lives Sample during the Groningen Social Stress Test (GSST). FSS were assessed by the Youth Self-Report, and clustered into a cluster of overtiredness, dizziness and musculoskeletal pain and a cluster

__Introduction:__ In paediatric research, there is a tension between what you can ask from a child and what is needed for the development of evidence-based treatments. To find an optimal balance in conducting clinical research and protecting the child, it is necessary to have empirical data on children's experiences. Until now, there are scarce empirical data on the experiences from the perspective of the child. In this manuscript, we describe the protocol of a twophase study measuring children's self-reported experiences during research procedures. __Methods and analysis:__ In the first phase of our study, we aim to interview approximately 40 children (6-18 years) about their self-reported experiences during research procedures. In the second phase, we will develop a questionnaire to measure children's experiences during research procedures in a quantitative way. We will use the interview outcomes for the development of this questionnaire. Next, we will measure the experiences of children during seven research procedures with this questionnaire. A one-month followup is conducted to investigate the emotional impact of the research procedures on the children. Children will be recruited from different research studies in three academic children's hospitals in the Netherlands. __Ethics and dissemination:__ The ethics committee of the VU University medical center evaluated both studies and indicated that there was no risk/discomfort associated, stating that both phases are exempt from getting a

Background: Failure of IVF treatment after a number of cycles can be devastating for couples. Although mild IVF strategies reduce the psychological burden of treatment, failure may cause feelings of regret that a more aggressive approach, including the transfer of two embryos, was not employed. In this study, the impact of treatment failure after two or more cycles on stress was studied, following treatment with a mild versus a standard treatment strategy. Methods: Randomized controlled two-centre trial (ISRCTN35766970). Women were randomized to undergo mild ovarian stimulation (including GnRH antagonist co-treatment) and single embryo transfer (n = 197) or standard GnRH agonist long-protocol ovarian stimulation with double embryo transfer (n = 194). Participants completed the Hospital Anxiety and Depression Scale prior to commencing treatment and 1 week after the outcome of their final treatment cycle was known. Data from women who underwent two or more IVF cycles were subject to analysis (n = 253). Results: Women who experienced treatment failure after standard IVF treatment presented more symptoms of depression 1 week after treatment termination compared with women who had undergone mild IVF: adjusted mean (±95% confidence interval) = 10.2 (±2.3) versus 5.4 (±1.8), respectively, P = 0.01. Conclusions: Failure of IVF treatment after a mild treatment strategy may result in fewer short-term symptoms of depression as compared to failure after a standard treatment strategy. These findings may further encourage the application of mild IVF treatment strategies in clinical practice.

The purpose of this pilot study is to evaluate the feasibility of a cognitive-behavioural training program for adolescents with chronic pain irrespective of pain localisation. A secondary aim was to give an impression of the effect of the program on pain and quality of life. Eight adolescents (14-18 years) with chronic non-organic pain recruited from the general population (and their parents) participated in this pilot study. The intervention included five group meetings alternated with four telephone contacts (during the self-management weeks) over a period of 9 weeks. The training aimed to change pain behaviour through pain education, relaxation strategies, problem-solving techniques, assertiveness training, cognitive restructuring and by stimulating the adolescent's physical activity level. The training further addresses the social context of pain by inviting parents to attend two meetings for the parents only, and by asking the adolescents to bring a peer to one of the meetings. Adolescents and their parents were positive about the program. Adolescents felt they were more in control of their pain and parents valued the support they experienced in helping their children to master the pain. The training was considered to be feasible in daily life. Further, the preliminary data showed an effect on pain and quality of life in the expected direction. The results underline the need for a definitive study with a larger sample size and a random controlled design.

The aim of the study was to determine whether children with chronic benign pain are in contact with their general practitioner (GP) more frequently than those without chronic benign pain. A random sample of children and adolescents aged between 0 and 18 years of age was drawn from the records of ten general practices. According to their responses to a pain questionnaire, subjects were assigned to the chronic benign pain group (n = 95) if they had pain of more than three months' duration, or to the control group (n = 105) if they had pain of less than three months' duration or no pain at all. All the subjects had an average GP consultation rate of 2.6 contacts per year. No significant age and sex differences were found. Chronic benign pain in childhood and adolescence is not related to increased use of healthcare services, suggesting that somatisation does not play a major role in children with chronic benign pain.

Among fertility centres, much discussion focuses on whether to withhold infertility treatment from special patient groups (lesbians, prospective single parent(s), prospective parent(s) of relatively advanced age, or with severe diseases) because it is assumed that this is in the best interest of the child. The present study aimed to establish whether there is any empirical evidence for this assumption. A literature search was made in PubMed/Medline and PsycINFO to identify studies that had assessed psychological outcomes of children and quality of parenting after infertility treatment. Eight studies met the following inclusion criteria: published in an English-language peer-reviewed journal between 1978 and 2002, and focused on psychosocial child development and quality of parenting after infert

OBJECTIVE: To study chronic pain not caused by somatic disease in adolescents and the effect of pain on the quality of life of the adolescents and their families. METHODS: One hundred twenty-eight youngsters (12-18 years) who had reported chronic pain kept a 3-week diary of their pain and completed a questionnaire on quality of life. Their mothers completed a questionnaire on the impact of their youngster's pain on the family. RESULTS: The most prevalent pains were limb pain, headache, abdominal, and back pain. The pain increased during the day, with the highest frequency around dinner time and the highest intensity around bedtime. Girls reported more intense and more frequent pain than boys. The higher the intensity and frequency of the pain, the lower the self-reported quality of life of the female or male adolescent, especially regarding psychological functioning (e.g. feeling less at ease), physical status (a greater incidence of other somatic complaints), and functional status (more impediments to leisure and daily activities). Chronic pain also had a negative impact on family life. The mothers reported restrictions, particularly in social life, and problems dealing with the stress of the adolescent's pain. CONCLUSIONS: Chronic pain, not caused by somatic disease, was present to a higher degree in girls; the pain increased during the day and had a negative impact on quality of life of the adolescents and the family. There is a need for future research aimed at identifying risk factors for chronic pain and pain-associated quality of life in children and adolescents.

OBJECTIVE: To assess parental burden and grief one year after having a child with a congenital anomaly. METHOD: Twenty-five couples completed the Impact on Family Scale (IFS) and 22 couples answered the Perinatal Grief Scale (PGS). In addition, 27 mothers completed the Functional Health Status Scale (FSII-R). RESULTS: Mothers and fathers showed no significant differences in overall burden (IFS) and grief (PGS). Regarding the subscales, mothers reported significantly more personal strain. Foreknowledge from prenatal diagnosis about the anomaly, a low perceived functional health status of the child, and multiple congenital anomalies increased the burden and grief. CONCLUSIONS: A perinatal counseling team that provides clear and consistent information about the anomalies, the treatment, and the prognosis would help to reduce unnecessary stress and uncertainty, particularly for parents who received prenatal information and whose infant has multiple congenital anomalies.

Medical-technical advances in prenatal diagnosis have made it possible to detect many fetal anomalies before the baby is born. It would therefore be logical to expect that only 'perfect' children will be born - an expectation that goes hand in hand with the Western practice of consciously choosing to have children. Under these circumstances, losing a baby might turn out to be an even more dramatic experience than ever. Over the past five years, many books have been published in which bereaved parents tell their story. Scientific research, on the other hand, has some amount of catching up to do, particularly in relation to follow-up assessments on perinatal grief The studies described in The grief of late pregnancy loss. A four year follow-up address this relatively unexplored field: long-term psychosocial sequelae of perinatal bereavement.

We evaluated whether the emotional reactions of women at 2–6 weeks after the prenatal diagnosis of a lethal anomaly and at 3 months after perinatal loss might be predicted by previous stress and acute psychological defence reactions to the diagnosis. Previous stress was defined objectively as a history of major life event(s) and having received professional mental health treatment in the past, and subjectively as the disposition for feelings of inadequacy and anxiety. Forty-one women were interviewed and completed measures on their history of major life events, whether they had received professional mental health treatment in the past, inadequacy, acute psychological defence reactions and perinatal grief. Regression analyses showed that inadequacy was the most strongly positive predictor of perinatal grief shortly after receiving the unfavourable diagnosis and three months after perinatal loss. In addition to inadequacy, having received professional mental health treatment in the past led to significantly more intense grief, but only shortly after receiving the unfavourable diagnosis. Previous life events intensified grief three months after perinatal death. The grieving process was significantly moderated by the defence of ‘principalization’ while it was significantly intensified by ‘turning aggression against oneself’, but only shortly after receiving the unfavourable diagnosis. These effects were not contaminated by relationships with pregnancy-related variables. Our findings imply that psychological support for women with perinatal loss should particularly be offered to those who have been identified as generally anxious, who have reported previous major life events and have received professional mental health treatment in the past.

Quality of life and maladjustment related to hair loss were studied by means of a standardized interview in a group of 58 women with alopecia androgenetica who applied for treatment at the Department of Dermatology. The hair loss was found to have a negative influence on the quality of life on the majority of them. In 88%, hair loss had negative effects on their daily life; in about 75%, the hair problems were manifested in negative self-esteem and about 50% experienced social problems. General psychosocial maladjustment in relation to hair loss was indicated in almost one-third of the women.