Lotte Haverman | University of Amsterdam (original) (raw)
Papers by Lotte Haverman
Rheumatology (Oxford, England)
It is generally recognized that for all children the fulfilling of age-specific psychosocial deve... more It is generally recognized that for all children the fulfilling of age-specific psychosocial developmental tasks in childhood is of great importance to adjustment in adult life, including participation in society. For young adults with JIA this is more difficult. We assume that the achievement of psychosocial milestones while growing up (psychosocial developmental trajectory) is also related to labour participation. A proportion of all young adults with JIA have to apply for disability benefits. This study assessed the health-related quality of life (HRQOL) and the psychosocial developmental trajectory of young female beneficiaries with JIA compared with peers from the Dutch general population. Young females with disability benefits because of JIA completed the RAND-36 (HRQOL) and the Course of Life Questionnaire (psychosocial developmental trajectory). Differences between respondents and the peer group were tested using analysis of variance and logistic regression analysis by group...
BMC Pediatrics
Health Related Quality of Life (HRQOL) questionnaires are increasingly used in clinical practice.... more Health Related Quality of Life (HRQOL) questionnaires are increasingly used in clinical practice. These Patient Reported Outcomes (PROs) are provided to the paediatrician to facilitate communication with patients during a consultation. The aim of the current article is to describe the development and introduction of a new web-based application for the use of PROs in daily paediatric clinical practice. Currently, the use of PROs in daily clinical practice is very time consuming and often has logistical problems. The use of a web-based programme can overcome these problems and contributes to an improved use of PROs in clinical practice. We therefore developed an easily accessible website (KLIK) for outpatient treatment and a training programme for paediatricians to maximize the effectiveness and the practical use of PROs (KLIK PROfile). The KLIK study was launched in August 2008 to evaluate the use of the KLIK PROfile in daily clinical practice. The KLIK study evaluates whether feedba...
Quality of Life Research
The theme of ISOQOL's 19th Annual Conference in Budapest, Hungary, was The Journey of Quality... more The theme of ISOQOL's 19th Annual Conference in Budapest, Hungary, was The Journey of Quality of Life Research: A Path Towards Personalized Medicine. Innovations in e-health was one of four plenary panels. E-health is changing the landscape of clinical practice and health care, but the best way to leverage the many promised benefits of emerging e-health technologies is still not clear. The Innovations in e-health panel presented emerging changes in technologies and applications that will facilitate clinical decision making, improve quality and efficiency of care, engage individuals in clinical decision making, and empower them to adopt healthy behaviors. The purpose of this paper was to present emerging trends in e-health and considerations for successful adoption of new technologies, and an overview of each of the presentations in the e-health plenary. The presentations included a personal perspective on the use of technology for self-monitoring in Parkinson's disease, an o...
The Journal of pediatrics
To develop and validate a Distress Thermometer for Parents (DT-P) for chronically ill children an... more To develop and validate a Distress Thermometer for Parents (DT-P) for chronically ill children and to determine a cutoff score for clinical distress. Parents of a chronically ill child (0-18 years) were recruited via announcements or were actively approached at the outpatient clinics of the Emma Children's Hospital/Academic Medical Center and Vrije Universiteit Medical Center. We modeled the development of the DT-P on the Distress Thermometer used in oncology medical care. The DT-P consists of a thermometer score from 0 (no distress) to 10 (extreme distress) and a problem list (practical, social, emotional, physical, cognitive, and parenting domains). The DT-P was validated with the Hospital Anxiety and Depression Scale (HADS) and the Parenting Stress Index. The mean thermometer score of the 706 participating parents was 3.7 (SD 3.0). The thermometer score and the scores in the practical, emotional, physical, and cognitive problem domains were strongly related to anxiety, depres...
Pediatric rheumatology online journal, 2014
A chronic illness, such as Juvenile Idiopathic Arthritis (JIA), has an impact on the whole family... more A chronic illness, such as Juvenile Idiopathic Arthritis (JIA), has an impact on the whole family, especially on parents caring for the ill child. Therefore the aim of this study is to evaluate parental Health Related Quality of Life (HRQOL) and parental perceptions of child vulnerability (PPCV) and associated variables in parents of a child with JIA. Parents of all JIA patients (0-18 years) in Amsterdam, the Netherlands, were eligible. HRQOL was measured using the TNO-AZL Questionnaire (TAAQOL) and PPCV using the Child Vulnerability Scale (CVS). The HRQOL of parents of a child with JIA was compared to a norm population, and differences between parents of a child with JIA and active arthritis versus parents of a child with JIA without active arthritis were analyzed (ANOVA). For PPCV, parents of a child with JIA were compared to a norm population, including healthy and chronically ill children (Chi(2), Mann-Whitney U test). Variables associated with PPCV were identified by logistic r...
Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2014
The aim of this study was to assess internal consistency and construct validity (known-groups val... more The aim of this study was to assess internal consistency and construct validity (known-groups validity) and to provide Dutch norm data for the Dutch Pediatric Quality of Life Inventory Multidimensional Fatigue Scale for Young Adults ages 18-30 years (PedsQL fatigue_YA). A Dutch sample of 649 young adults completed online a sociodemographic questionnaire and the PedsQL fatigue_YA including three subscales: general fatigue, sleep/rest fatigue and cognitive fatigue (0-100: Higher scores indicate less fatigue symptoms). The PedsQL fatigue_YA showed satisfactory to good internal consistency (Cronbach's alpha = .70-.94), except for one scale (.68). The mean scale scores were 68.23 (SD 19.15) for 'general fatigue,' 67.04 (SD 15.54) for 'sleep/rest fatigue' and 74.62 (SD 19.02) for 'cognitive fatigue.' Men reported significantly higher scores on 'general fatigue' and 'sleep/rest fatigue' than women. The PedsQL fatigue_YA distinguished between heal...
Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, Jan 15, 2015
Patient-reported outcome measures (PROs) were originally developed for comparing groups of people... more Patient-reported outcome measures (PROs) were originally developed for comparing groups of people in clinical trials and population studies, and the results were used to support treatment recommendations or inform health policy, but there was not direct benefit for the participants providing PROs data. However, as the experience in using those measures increased, it became obvious the clinical value in using individual patient PROs profiles in daily practice to identify/monitor symptoms, evaluate treatment outcomes and support shared decision-making. A key issue limiting successful implementation is clinicians' lack of knowledge on how to effectively utilize PROs data in their clinical encounters. Using a change management theoretical framework, this paper describes the development and implementation of three programs for training clinicians to effectively use PRO data in routine practice. The training programs are in three diverse clinical areas (adult oncology, lung transplant...
Tijdschrift voor Kindergeneeskunde, 2013
Rheumatology, 2012
It is generally recognized that for all children the fulfilling of age-specific psychosocial deve... more It is generally recognized that for all children the fulfilling of age-specific psychosocial developmental tasks in childhood is of great importance to adjustment in adult life, including participation in society. For young adults with JIA this is more difficult. We assume that the achievement of psychosocial milestones while growing up (psychosocial developmental trajectory) is also related to labour participation. A proportion of all young adults with JIA have to apply for disability benefits. This study assessed the health-related quality of life (HRQOL) and the psychosocial developmental trajectory of young female beneficiaries with JIA compared with peers from the Dutch general population. Young females with disability benefits because of JIA completed the RAND-36 (HRQOL) and the Course of Life Questionnaire (psychosocial developmental trajectory). Differences between respondents and the peer group were tested using analysis of variance and logistic regression analysis by group and age. The beneficiaries reported worse HRQOL than the peer group and achieved fewer milestones, or achieved the milestones at a later age than the peer group in the autonomy, social and psychosexual domain. Young females with JIA who have to apply for disability benefits are at risk for impaired HRQOL and a delay in their psychosocial developmental trajectory. Parents, physicians and other health-care providers should pay systematic attention to the development of social and independent functioning of children with JIA in order to optimize their adaptation to society at the time of transition to adulthood.
Nephrology Dialysis Transplantation, 2014
The Journal of Pediatrics, 2013
To develop and validate a Distress Thermometer for Parents (DT-P) for chronically ill children an... more To develop and validate a Distress Thermometer for Parents (DT-P) for chronically ill children and to determine a cutoff score for clinical distress. Parents of a chronically ill child (0-18 years) were recruited via announcements or were actively approached at the outpatient clinics of the Emma Children's Hospital/Academic Medical Center and Vrije Universiteit Medical Center. We modeled the development of the DT-P on the Distress Thermometer used in oncology medical care. The DT-P consists of a thermometer score from 0 (no distress) to 10 (extreme distress) and a problem list (practical, social, emotional, physical, cognitive, and parenting domains). The DT-P was validated with the Hospital Anxiety and Depression Scale (HADS) and the Parenting Stress Index. The mean thermometer score of the 706 participating parents was 3.7 (SD 3.0). The thermometer score and the scores in the practical, emotional, physical, and cognitive problem domains were strongly related to anxiety, depression, and the total score of the HADS (0.55 ≤ r ≤ 0.72). The thermometer score and all problem domain scores were moderately-to-strongly related to the Parenting Stress Index (0.38 ≤ r ≤ 0.63). A cutoff-score of 4 correctly identified 86% of "clinical HADS cases" (sensitivity) and 67% of "nonclinical HADS cases" (specificity). We developed the DT-P and examined its diagnostic utility in a large sample. The DT-P appeared to be a valid and useful short screening-tool for identifying parental distress.
Tijdschrift Voor Kindergeneeskunde, 2011
Summary Introduction. Children with a chronic illness often experience Health Related Quality of... more Summary Introduction. Children with a chronic illness often experience Health Related Quality of Life (HRQOL) problems. These problems are not always known or systematically discussed by paediatricians. For children and parents it is important to pay attention to HRQOL systematically. This is possible with the use of patient-reported outcomes (PROs). The patient completes a HRQOL questionnaire, and answers are summarized in
Health and Quality of Life Outcomes, 2014
Background: The purpose of this study is to provide Dutch norm data and to assess internal consis... more Background: The purpose of this study is to provide Dutch norm data and to assess internal consistency and construct validity for the Pediatric Quality of Life Inventory Young Adult Generic Core Scales (PedsQL_YA) in Dutch young adults aged 18-30 years. Methods: A sample of 649 young adults from the general Dutch population aged 18-30 years, stratified by age, sex, marital status and education, completed a socio-demographic questionnaire and the Dutch version of the PedsQL_YA online. Internal consistency of the PedsQL_YA scales was determined with Cronbach's alphas. Norm scores were obtained by calculating the mean PedsQL scale scores by gender, age and health status. Differences in scale scores were analyzed for gender, age and health status (construct validity) using two-sample t-tests and effect sizes were calculated. Construct validity was determined by testing differences in PedsQL scores between healthy young adults and young adults with chronic health conditions.
BMC Pediatrics, 2011
Health Related Quality of Life (HRQOL) questionnaires are increasingly used in clinical practice.... more Health Related Quality of Life (HRQOL) questionnaires are increasingly used in clinical practice. These Patient Reported Outcomes (PROs) are provided to the paediatrician to facilitate communication with patients during a consultation. The aim of the current article is to describe the development and introduction of a new web-based application for the use of PROs in daily paediatric clinical practice. Currently, the use of PROs in daily clinical practice is very time consuming and often has logistical problems. The use of a web-based programme can overcome these problems and contributes to an improved use of PROs in clinical practice. We therefore developed an easily accessible website (KLIK) for outpatient treatment and a training programme for paediatricians to maximize the effectiveness and the practical use of PROs (KLIK PROfile). The KLIK study was launched in August 2008 to evaluate the use of the KLIK PROfile in daily clinical practice. The KLIK study evaluates whether feedback from HRQOL data could influence patient satisfaction with the consultation, the advice given, the type of referrals and topics discussed. In this multicentre study, a control group (without the use of the KLIK PROfile) is compared to an intervention group (with the use of the KLIK PROfile). A sequential cohort design is chosen to avoid contamination between the study groups. Based on the positive experiences with the use of the KLIK PROfile acquired during the study we conclude that the KLIK PROfile may contribute to systematically monitor and discuss HRQOL issues during consultations. The next steps will be a comprehensive evaluation of the KLIK study data and the implementation of the KLIK PROfile in daily clinical practice in different patient groups.
Acta Paediatrica, 2014
Aim: Kawasaki disease (KD) is an acute paediatric vasculitis. The psychosocial consequences of th... more Aim: Kawasaki disease (KD) is an acute paediatric vasculitis. The psychosocial consequences of this sudden illness for parents are unknown. This study aimed to evaluate health related quality of life (HRQOL) and parental perceptions of child vulnerability (PPCV) in parents of children with KD, and to identify variables associated with PPCV.
Rheumatology (Oxford, England)
It is generally recognized that for all children the fulfilling of age-specific psychosocial deve... more It is generally recognized that for all children the fulfilling of age-specific psychosocial developmental tasks in childhood is of great importance to adjustment in adult life, including participation in society. For young adults with JIA this is more difficult. We assume that the achievement of psychosocial milestones while growing up (psychosocial developmental trajectory) is also related to labour participation. A proportion of all young adults with JIA have to apply for disability benefits. This study assessed the health-related quality of life (HRQOL) and the psychosocial developmental trajectory of young female beneficiaries with JIA compared with peers from the Dutch general population. Young females with disability benefits because of JIA completed the RAND-36 (HRQOL) and the Course of Life Questionnaire (psychosocial developmental trajectory). Differences between respondents and the peer group were tested using analysis of variance and logistic regression analysis by group...
BMC Pediatrics
Health Related Quality of Life (HRQOL) questionnaires are increasingly used in clinical practice.... more Health Related Quality of Life (HRQOL) questionnaires are increasingly used in clinical practice. These Patient Reported Outcomes (PROs) are provided to the paediatrician to facilitate communication with patients during a consultation. The aim of the current article is to describe the development and introduction of a new web-based application for the use of PROs in daily paediatric clinical practice. Currently, the use of PROs in daily clinical practice is very time consuming and often has logistical problems. The use of a web-based programme can overcome these problems and contributes to an improved use of PROs in clinical practice. We therefore developed an easily accessible website (KLIK) for outpatient treatment and a training programme for paediatricians to maximize the effectiveness and the practical use of PROs (KLIK PROfile). The KLIK study was launched in August 2008 to evaluate the use of the KLIK PROfile in daily clinical practice. The KLIK study evaluates whether feedba...
Quality of Life Research
The theme of ISOQOL's 19th Annual Conference in Budapest, Hungary, was The Journey of Quality... more The theme of ISOQOL's 19th Annual Conference in Budapest, Hungary, was The Journey of Quality of Life Research: A Path Towards Personalized Medicine. Innovations in e-health was one of four plenary panels. E-health is changing the landscape of clinical practice and health care, but the best way to leverage the many promised benefits of emerging e-health technologies is still not clear. The Innovations in e-health panel presented emerging changes in technologies and applications that will facilitate clinical decision making, improve quality and efficiency of care, engage individuals in clinical decision making, and empower them to adopt healthy behaviors. The purpose of this paper was to present emerging trends in e-health and considerations for successful adoption of new technologies, and an overview of each of the presentations in the e-health plenary. The presentations included a personal perspective on the use of technology for self-monitoring in Parkinson's disease, an o...
The Journal of pediatrics
To develop and validate a Distress Thermometer for Parents (DT-P) for chronically ill children an... more To develop and validate a Distress Thermometer for Parents (DT-P) for chronically ill children and to determine a cutoff score for clinical distress. Parents of a chronically ill child (0-18 years) were recruited via announcements or were actively approached at the outpatient clinics of the Emma Children's Hospital/Academic Medical Center and Vrije Universiteit Medical Center. We modeled the development of the DT-P on the Distress Thermometer used in oncology medical care. The DT-P consists of a thermometer score from 0 (no distress) to 10 (extreme distress) and a problem list (practical, social, emotional, physical, cognitive, and parenting domains). The DT-P was validated with the Hospital Anxiety and Depression Scale (HADS) and the Parenting Stress Index. The mean thermometer score of the 706 participating parents was 3.7 (SD 3.0). The thermometer score and the scores in the practical, emotional, physical, and cognitive problem domains were strongly related to anxiety, depres...
Pediatric rheumatology online journal, 2014
A chronic illness, such as Juvenile Idiopathic Arthritis (JIA), has an impact on the whole family... more A chronic illness, such as Juvenile Idiopathic Arthritis (JIA), has an impact on the whole family, especially on parents caring for the ill child. Therefore the aim of this study is to evaluate parental Health Related Quality of Life (HRQOL) and parental perceptions of child vulnerability (PPCV) and associated variables in parents of a child with JIA. Parents of all JIA patients (0-18 years) in Amsterdam, the Netherlands, were eligible. HRQOL was measured using the TNO-AZL Questionnaire (TAAQOL) and PPCV using the Child Vulnerability Scale (CVS). The HRQOL of parents of a child with JIA was compared to a norm population, and differences between parents of a child with JIA and active arthritis versus parents of a child with JIA without active arthritis were analyzed (ANOVA). For PPCV, parents of a child with JIA were compared to a norm population, including healthy and chronically ill children (Chi(2), Mann-Whitney U test). Variables associated with PPCV were identified by logistic r...
Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2014
The aim of this study was to assess internal consistency and construct validity (known-groups val... more The aim of this study was to assess internal consistency and construct validity (known-groups validity) and to provide Dutch norm data for the Dutch Pediatric Quality of Life Inventory Multidimensional Fatigue Scale for Young Adults ages 18-30 years (PedsQL fatigue_YA). A Dutch sample of 649 young adults completed online a sociodemographic questionnaire and the PedsQL fatigue_YA including three subscales: general fatigue, sleep/rest fatigue and cognitive fatigue (0-100: Higher scores indicate less fatigue symptoms). The PedsQL fatigue_YA showed satisfactory to good internal consistency (Cronbach's alpha = .70-.94), except for one scale (.68). The mean scale scores were 68.23 (SD 19.15) for 'general fatigue,' 67.04 (SD 15.54) for 'sleep/rest fatigue' and 74.62 (SD 19.02) for 'cognitive fatigue.' Men reported significantly higher scores on 'general fatigue' and 'sleep/rest fatigue' than women. The PedsQL fatigue_YA distinguished between heal...
Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, Jan 15, 2015
Patient-reported outcome measures (PROs) were originally developed for comparing groups of people... more Patient-reported outcome measures (PROs) were originally developed for comparing groups of people in clinical trials and population studies, and the results were used to support treatment recommendations or inform health policy, but there was not direct benefit for the participants providing PROs data. However, as the experience in using those measures increased, it became obvious the clinical value in using individual patient PROs profiles in daily practice to identify/monitor symptoms, evaluate treatment outcomes and support shared decision-making. A key issue limiting successful implementation is clinicians' lack of knowledge on how to effectively utilize PROs data in their clinical encounters. Using a change management theoretical framework, this paper describes the development and implementation of three programs for training clinicians to effectively use PRO data in routine practice. The training programs are in three diverse clinical areas (adult oncology, lung transplant...
Tijdschrift voor Kindergeneeskunde, 2013
Rheumatology, 2012
It is generally recognized that for all children the fulfilling of age-specific psychosocial deve... more It is generally recognized that for all children the fulfilling of age-specific psychosocial developmental tasks in childhood is of great importance to adjustment in adult life, including participation in society. For young adults with JIA this is more difficult. We assume that the achievement of psychosocial milestones while growing up (psychosocial developmental trajectory) is also related to labour participation. A proportion of all young adults with JIA have to apply for disability benefits. This study assessed the health-related quality of life (HRQOL) and the psychosocial developmental trajectory of young female beneficiaries with JIA compared with peers from the Dutch general population. Young females with disability benefits because of JIA completed the RAND-36 (HRQOL) and the Course of Life Questionnaire (psychosocial developmental trajectory). Differences between respondents and the peer group were tested using analysis of variance and logistic regression analysis by group and age. The beneficiaries reported worse HRQOL than the peer group and achieved fewer milestones, or achieved the milestones at a later age than the peer group in the autonomy, social and psychosexual domain. Young females with JIA who have to apply for disability benefits are at risk for impaired HRQOL and a delay in their psychosocial developmental trajectory. Parents, physicians and other health-care providers should pay systematic attention to the development of social and independent functioning of children with JIA in order to optimize their adaptation to society at the time of transition to adulthood.
Nephrology Dialysis Transplantation, 2014
The Journal of Pediatrics, 2013
To develop and validate a Distress Thermometer for Parents (DT-P) for chronically ill children an... more To develop and validate a Distress Thermometer for Parents (DT-P) for chronically ill children and to determine a cutoff score for clinical distress. Parents of a chronically ill child (0-18 years) were recruited via announcements or were actively approached at the outpatient clinics of the Emma Children's Hospital/Academic Medical Center and Vrije Universiteit Medical Center. We modeled the development of the DT-P on the Distress Thermometer used in oncology medical care. The DT-P consists of a thermometer score from 0 (no distress) to 10 (extreme distress) and a problem list (practical, social, emotional, physical, cognitive, and parenting domains). The DT-P was validated with the Hospital Anxiety and Depression Scale (HADS) and the Parenting Stress Index. The mean thermometer score of the 706 participating parents was 3.7 (SD 3.0). The thermometer score and the scores in the practical, emotional, physical, and cognitive problem domains were strongly related to anxiety, depression, and the total score of the HADS (0.55 ≤ r ≤ 0.72). The thermometer score and all problem domain scores were moderately-to-strongly related to the Parenting Stress Index (0.38 ≤ r ≤ 0.63). A cutoff-score of 4 correctly identified 86% of "clinical HADS cases" (sensitivity) and 67% of "nonclinical HADS cases" (specificity). We developed the DT-P and examined its diagnostic utility in a large sample. The DT-P appeared to be a valid and useful short screening-tool for identifying parental distress.
Tijdschrift Voor Kindergeneeskunde, 2011
Summary Introduction. Children with a chronic illness often experience Health Related Quality of... more Summary Introduction. Children with a chronic illness often experience Health Related Quality of Life (HRQOL) problems. These problems are not always known or systematically discussed by paediatricians. For children and parents it is important to pay attention to HRQOL systematically. This is possible with the use of patient-reported outcomes (PROs). The patient completes a HRQOL questionnaire, and answers are summarized in
Health and Quality of Life Outcomes, 2014
Background: The purpose of this study is to provide Dutch norm data and to assess internal consis... more Background: The purpose of this study is to provide Dutch norm data and to assess internal consistency and construct validity for the Pediatric Quality of Life Inventory Young Adult Generic Core Scales (PedsQL_YA) in Dutch young adults aged 18-30 years. Methods: A sample of 649 young adults from the general Dutch population aged 18-30 years, stratified by age, sex, marital status and education, completed a socio-demographic questionnaire and the Dutch version of the PedsQL_YA online. Internal consistency of the PedsQL_YA scales was determined with Cronbach's alphas. Norm scores were obtained by calculating the mean PedsQL scale scores by gender, age and health status. Differences in scale scores were analyzed for gender, age and health status (construct validity) using two-sample t-tests and effect sizes were calculated. Construct validity was determined by testing differences in PedsQL scores between healthy young adults and young adults with chronic health conditions.
BMC Pediatrics, 2011
Health Related Quality of Life (HRQOL) questionnaires are increasingly used in clinical practice.... more Health Related Quality of Life (HRQOL) questionnaires are increasingly used in clinical practice. These Patient Reported Outcomes (PROs) are provided to the paediatrician to facilitate communication with patients during a consultation. The aim of the current article is to describe the development and introduction of a new web-based application for the use of PROs in daily paediatric clinical practice. Currently, the use of PROs in daily clinical practice is very time consuming and often has logistical problems. The use of a web-based programme can overcome these problems and contributes to an improved use of PROs in clinical practice. We therefore developed an easily accessible website (KLIK) for outpatient treatment and a training programme for paediatricians to maximize the effectiveness and the practical use of PROs (KLIK PROfile). The KLIK study was launched in August 2008 to evaluate the use of the KLIK PROfile in daily clinical practice. The KLIK study evaluates whether feedback from HRQOL data could influence patient satisfaction with the consultation, the advice given, the type of referrals and topics discussed. In this multicentre study, a control group (without the use of the KLIK PROfile) is compared to an intervention group (with the use of the KLIK PROfile). A sequential cohort design is chosen to avoid contamination between the study groups. Based on the positive experiences with the use of the KLIK PROfile acquired during the study we conclude that the KLIK PROfile may contribute to systematically monitor and discuss HRQOL issues during consultations. The next steps will be a comprehensive evaluation of the KLIK study data and the implementation of the KLIK PROfile in daily clinical practice in different patient groups.
Acta Paediatrica, 2014
Aim: Kawasaki disease (KD) is an acute paediatric vasculitis. The psychosocial consequences of th... more Aim: Kawasaki disease (KD) is an acute paediatric vasculitis. The psychosocial consequences of this sudden illness for parents are unknown. This study aimed to evaluate health related quality of life (HRQOL) and parental perceptions of child vulnerability (PPCV) in parents of children with KD, and to identify variables associated with PPCV.