Experiences of families post treatment for childhood brain tumours during medical clinic consultations regarding health-related quality of life, unmet needs and communication barriers: A qualitative exploration.

BACKGROUND: Many studies highlight poor health-related quality of life (HRQoL) in children treated for brain tumours and their parents. However, little is known about the extent to which their informational, healthcare and communication needs regarding HRQoL are met during medical outpatient consultations. AIM: To explore the experiences of families regarding communication with physicians about HRQoL issues during consultations after treatment for childhood brain tumours. METHODS: Interviews were conducted with 18 families of children and adolescents aged 8-17 years after completion of brain tumour treatment. Participants had completed treatment within the last 5 years and were receiving regular outpatient follow-up care. Thematic analysis was undertaken using the Framework Method. RESULTS: Five main themes were identified: (i) unmet emotional and mental health needs; (ii) double protection; (iii) unmet information needs; (iv) communication barriers within consultations; and (v) finding a new normal. CONCLUSION: There was a need to improve communication between clinicians and these families, improve information provision, and overcome barriers to conversing with children within these outpatient consultations. Children and their parents should be supported to voice their current needs and concerns regarding their HRQoL. These findings will inform further development of the UK version of the 'KLIK' patient- and parent-reported outcome (PROM) portal.

COVID-19 and children with cancer: Parents' experiences, anxieties and support needs.

BACKGROUND: Children with cancer were designated as clinically extremely vulnerable if they were to contract SARS-CoV-2 due to immune suppression in the early phase of the COVID-19 pandemic. Our aim was to explore experiences, information and support needs, and decision making of parents with a child with cancer in response to this phase in the United Kingdom. METHODS: Parents of a child with cancer completed a survey at a time when the UK moved into a period of 'lockdown'. An online survey was developed by the research team to capture parents' experiences, information and support needs, and decision making, using closed statements and open text boxes. Descriptive quantitative analyses and qualitative thematic content analysis were undertaken. FINDINGS: One hundred seventy-one parents/caregivers completed the survey. Eighty-five percent were worried about the virus and they were vigilant about the virus (92%) or cancer symptoms (93.4%). For two-thirds (69.6%), hospital was no longer considered a safe place. Eight overarching themes were identified related to the virus: (a) risk of infection; (b) information, guidance and advice; (c) health care provision; (d) fears and anxieties; or related to lockdown/isolation: (e) psychological and social impact; (f) keeping safe under lockdown; (g) provisions and dependence; and (h) employment and income. CONCLUSIONS: This is the first study, to the best of our knowledge, to report experiences of parents of a child with cancer during the SARS-CoV-2/COVID-19 pandemic. The majority of parents were worried about SARS-CoV-2 and transmitting the virus to their child. Hospital was no longer perceived to be a safe place, and parents were worried about suboptimal cancer care. Parents described fear and anxiety and the psychological, social and economic impact of isolation.

COVID-19: experiences of lockdown and support needs in children and young adults with kidney conditions.

BACKGROUND: During the initial COVID-19 pandemic, young United Kingdom (UK) kidney patients underwent lockdown and those with increased vulnerabilities socially isolated or 'shielded' at home. The experiences, information needs, decision-making and support needs of children and young adult (CYA) patients or their parents during this period is not well known. METHODS: A UK-wide online survey co-produced with patients was conducted in May 2020 amongst CYA aged 12-30, or parents of children aged < 18 years with any long-term kidney condition. Participants answered qualitative open text alongside quantitative closed questions. Thematic content analysis using a three-stage coding process was conducted. RESULTS: One-hundred and eighteen CYA (median age 21) and 197 parents of children (median age 10) responded. Predominant concerns from CYA were heightened vigilance about viral (68%) and kidney symptoms (77%) and detrimental impact on education or work opportunities (70%). Parents feared the virus more than CYA (71% vs. 40%), and had concerns that their child would catch the virus from them (64%) and would have an adverse impact on other children at home (65%). CYA thematic analysis revealed strong belief of becoming seriously ill if they contracted COVID-19; lost educational opportunities, socialisation and career development; and frustration with the public for not following social distancing rules. Positive outcomes included improved family relationships and community cohesion. Only a minority (14-21% CYA and 20-31% parents, merged questions) desired more support. Subgroup analysis identified greater negative psychological impact in the shielded group. CONCLUSIONS: This survey demonstrates substantial concern and need for accurate tailored advice for CYA based on individualised risks to improve shared decision making.

Paediatric surgery for childhood cancer: Lasting experiences and needs of children and parents.

OBJECTIVE: Surgery for paediatric cancer presents many stresses on patients and families. The authors aimed to understand the long-term impact of childhood cancer surgery on survivors and parents. METHODS: The study recruited participants from 11 Australia/New Zealand hospitals for telephone interviews. The authors used descriptive statistics to analyse participants' quantitative distress ratings and conducted thematic analysis of shared surgical experiences and needs. RESULTS: Of 32 participants (n = 17 survivors, n = 15 parents), survivors' mean age at surgery was 6.9 (SD = 5.17) and parents' children were 2.1 years old (SD = 1.41) at time of surgery. Survivors had surgery on average 15.2 years ago (SD = 6.72) and parents' children 11.5 years ago (SD = 3.94). Parents and survivors rated surgery as highly distressing. Pre-operatively, survivors recalled experiencing fear and pain mainly associated with pre-operative procedures. Post-operatively, survivors reported immobility and some lasting behavioural disturbances. Parents described pre- and intra-operative anxiety and stress and some lasting post-operative psychological disturbances. Experiences appeared to improve with clear/consistent communication from hospital staff, proximity to hospital, and with support for parents and children post-operatively. CONCLUSIONS: Surgical treatment for childhood cancer can have a lasting impact for survivors and parents. Better information provision may improve families' surgical experience whilst reducing anxiety, distress and physical discomfort.

Transferring critically ill babies and children home to die from intensive care.

BACKGROUND: A significant proportion of hospital deaths occur in intensive care units (ICU) and often follow a decision to limit or withdraw life-sustaining treatment. Facilitating the preferred choice in place of death for babies/children is increasingly being advocated, although the literature on a home death is often limited to case reports. AIMS AND OBJECTIVES: To examine (a) health care professionals' (HCPs) views and experience of transferring babies/children home to die from intensive care, (b) patient clinical characteristics that HCPs would consider transferring home and (c) barriers to transferring home. DESIGN: A cross-sectional descriptive web-based survey. METHODS: A total of 900 HCPs from paediatric and neonatal ICU across the United Kingdom were invited to participate. RESULTS: A total of 191 (22%) respondents completed the survey; 135 (70.7%) reported being involved in transferring home to die. However, most (58.4%) had just transferred one or two patients in the last 3 years. Overall, respondents held positive views towards transfer, although there was some evidence of divided opinion. Patients identified as unsuitable for transfer included unstable patients (57.6%) and those in need of cardiovascular support (56%). There was statistically significant difference in views between those with and without experience, in that those with experience had more positive views. The most significant barrier was the lack of access to care in the community. CONCLUSIONS: HCPs view the concept of transferring critically ill babies/children home to die positively but have infrequent experience. Views held about transfers are influenced by previous experience. The clinical instability of patients and access to community care are central to decision-making. RELEVANCE TO CLINICAL PRACTICE: A home death for critically ill babies/children is occurring in the United Kingdom but infrequently. Experience of a transfer home positively influences views and increases confidence. Improved multi-organizational collaboration between ICU and community care teams would assist decision-making and facilitation for a transfer home.

The development of a consensus-based nutritional pathway for infants with CHD before surgery using a modified Delphi process.

IntroductionDespite improvements in the medical and surgical management of infants with CHD, growth failure before surgery in many infants continues to be a significant concern. A nutritional pathway was developed, the aim of which was to provide a structured approach to nutritional care for infants with CHD awaiting surgery.Materials and methodsThe modified Delphi process was development of a nutritional pathway; initial stakeholder meeting to finalise draft guidelines and develop questions; round 1 anonymous online survey; round 2 online survey; regional cardiac conference and pathway revision; and final expert meeting and pathway finalisation. RESULTS: Paediatric Dietitians from all 11 of the paediatric cardiology surgical centres in the United Kingdom contributed to the guideline development. In all, 33% of participants had 9 or more years of experience working with infants with CHD. By the end of rounds 1 and 2, 76 and 96% of participants, respectively, were in agreement with the statements. Three statements where consensus was not achieved by the end of round 2 were discussed and agreed at the final expert group meeting. CONCLUSIONS: Nutrition guidelines were developed for infants with CHD awaiting surgery, using a modified Delphi process, incorporating the best available evidence and expert opinion with regard to nutritional support in this group.

Parental coping in the context of having a child who is facing death: A theoretical framework.

ABSTRACTObjective:While improvements in healthcare have resulted in children with complex and life-threatening conditions living longer, a proportion of them still die. The death of a child puts parents at increased risk for anxiety, depression, and complicated grief. Increasing our understanding of the coping strategies that parents use under such extreme circumstances will enable us to best provide support to families, before and after a child's death. Our aim herein was to develop a theoretical framework of parental coping. METHOD: Evidence from the literature was employed to develop a theoretical framework to describe parental coping in the context of having a child with a life-limiting illness who is declining and facing eventual death. RESULTS: The reasoning and argument consists of three guiding elements: (1) the importance of approach as well as avoidance (as coping strategies) in the context of managing the extreme emotions; (2) the importance of the social aspect of coping within a family, whereby parents cope for others as well as for themselves; and (3) the importance of a flexible and balanced coping profile, with parents using different coping strategies simultaneously. Central to the proposed framework is that effective coping, in terms of adjustment, is achieved by balancing coping strategies: accessing different coping strategies simultaneously or in parallel with a specific focus on (1) approach and avoidance and (2) coping aimed at self and others. SIGNIFICANCE OF RESULTS: Understanding of parental coping strategies is essential for health professionals in order to support parents effectively.

Participation in a clinical trial for a child with cancer is burdensome for a minority of children.

AIM: This study explored how parents who had lost a child to cancer felt about them taking part in a clinical trial. METHODS: A retrospective questionnaire was sent to parents who had lost a child to cancer. They were asked whether their child took part in a clinical trial during their palliative phase, their motives for their child's participation, how they perceived their child's burden and whether they would, hypothetically speaking, enrol again. RESULTS: The 24 parents of 16 deceased children who had participated in a clinical trial explained their motives for their child's participation. The most common answers, with multiple responses, were treatment for future patients (n = 16), hope for a cure (n = 9) and prolonging their child's life (n = 6). Eight parents said that participating was not burdensome for their child and four said it was very burdensome, with others answering in between. None of the parents would decline participation if they would be in the same situation again. CONCLUSION: Performing clinical trials, even in a vulnerable population, such as children with cancer at the end of life, may not always lead to increased burden. None of the parents would in future, given the same circumstances, decline participation in a clinical trial.

Talking about Death with Children with Incurable Cancer: Perspectives from Parents.

OBJECTIVE: To investigate the rationale and consequences associated with a parent's decision to discuss death with a child with incurable cancer. STUDY DESIGN: We present data from a larger retrospective study involving bereaved parents of a child who died of cancer. Parents were asked whether they had discussed the impending death with their child, whether they reflected on this discussion positively, their reasons for not discussing death with their child, and the manner in which the conversation regarding death occurred. The data were analyzed qualitatively using a framework approach. RESULTS: Of the 86 parents of 56 children who answered the questions regarding discussing death with their child, 55 parents of 35 children did not discuss the impending death with their child. The following themes were identified: the parents' inability to discuss the impending death; the parents' desire to protect their child; views regarding talking with children; parents' views of child characteristics; the child's unwillingness to discuss the subject; lack of opportunity to talk; and the child's disability. The parents who did discuss death with their child generally used symbolic and/or religious narratives, or they had brief, direct conversations regarding death. The majority of parents felt positive regarding their decision about whether to talk with their child about his/her impending death. CONCLUSION: Most parents in this study cited several reasons for not discussing death with their child. Our findings highlight the sensitive and complex issues surrounding these conversations, indicating that there may be a role for clinicians in supporting parents.

A national survey exploring views and experience of health professionals about transferring patients from critical care home to die.

BACKGROUND: Transferring critically ill patients home to die is poorly explored in the literature to date. This practice is rare, and there is a need to understand health care professionals' (HCP) experience and views. OBJECTIVES: To examine (1) HCPs' experience of transferring patients home to die from critical care, (2) HCPs' views about transfer and (3) characteristics of patients, HCPs would hypothetically consider transferring home to die. DESIGN: A national study developing a web-based survey, which was sent to the lead doctors and nurses in critical care units. SETTING/PARTICIPANTS: Lead doctors and senior nurses (756 individuals) working in 409 critical care units across the United Kingdom were invited to participate in the survey. RESULTS: In total, 180 (23.8%) completed surveys were received. A total of 65 (36.1%) respondents had been actively involved in transferring patients home to die and 28 (15.5%) had been involved in discussions that did not lead to transfer. Respondents were supportive of the idea of transfer home to die (88.8%). Patients identified by respondents as unsuitable for transfer included unstable patients (61.8%), intubated and ventilated patients (68.5%) and patients receiving inotropes (65.7%). There were statistically significant differences in views between those with and without experience and between doctors and nurses. Nurses and those with experience tended to have more positive views. CONCLUSION: While transferring patients home to die is supported in critical care, its frequency in practice remains low. Patient stability and level of intervention are important factors in decision-making in this area. Views held about this practice are influenced by previous experience and the professional role held.

Parenting stress as a mediator of parents' negative mood state and behavior problems in children with newly diagnosed cancer.

OBJECTIVE: The aim was to investigate the influence of parents' negative mood state and parenting stress on behavior in children with newly diagnosed cancer. METHODS: A total of 123 parents (n=58 fathers, n=65 mothers) of 67 children with newly diagnosed cancer completed three questionnaires separately at the same time measuring parents' negative mood state, parenting stress, and child behavior problems. RESULTS: Parents' negative mood state was weakly correlated to more child behavior problems (r=0.31, p<0.01), and higher levels of parenting stress were strongly correlated to more child behavior problems (r=0.61, p<0.01). Mediation analyses indicated that the relationship between parents' negative mood state and child behavior problems (c=0.29, p=0.02 (fathers); c=0.25, p=0.04 (mothers)) became non-significant after mediating for parenting stress (c'=0.003, p=0.98 (fathers); c'=0.10, p=0.42 (mothers)). The indirect effect of parents' negative mood state and child behavior problems was only significant for fathers (95% CI [0.12; 0.51]), indicating that parenting stress mediates the effect between fathers' negative mood state and child behavior problems. CONCLUSIONS: This is the first study to demonstrate the mediational role of parenting stress in fathers of a child with newly diagnosed cancer.

The Development of a Communication Tool to Aid Parent-Centered Communication between Parents and Healthcare Professionals: A Quality Improvement Project.

Good communication is central to good healthcare. As a result of poor communication between parents and healthcare professionals (HCPs) in clinical settings, this study aimed to address this problem by developing a communication tool to empower parents and act as a prompt for HCPs to talk about the child's care and gather information at the point of admission to hospital about what is important to families, therefore supporting patient-centered communication. A design thinking process was used to develop a physical copy of Chloe's card and evaluate its use. Design thinking is a problem-solving approach, which uses an empathetic lens to integrate viewpoints of different stakeholders throughout the process of creating solutions. Design thinking involves five processes: (1) empathise-including a literature review and data synthesis, (2) define-by completing semi-structured interviews with parents about their experience of communication and HCPs perceptions of parent's experience of communication, (3) ideate-iterate the design of Chloe's card with parents and HCPs, (4) prototype-develop the design of Chloe's card, and (5) test-pilot test in clinical practice. Results from this initial study suggest that a small hand-held card, with emoticons and a place to write concerns, was acceptable to parents and feasible to use in clinical practice. Parents do not always feel heard by HCPs and a tool such as Chloe's card may help facilitate sharing of information about matters important to them and their child. However, some HCPs felt the need for a communication tool undermined their clinical skills. Feedback from HCP participants suggests that the idea of Chloe's card was acceptable and perceived as potentially being useful in clinical practice. Further work is required, as part of a larger study, to further refine this communication tool, identify those parents who would benefit most from Chloe's card, as well as to further refine the HCP process prior to implementing it into clinical settings. It was noted future iterations would benefit from a digital version linked with a child's electronic record, as well as multi-language versions and information for parents.

Concurrent and longitudinal bidirectional relationships between toddlers' chronic pain and mental health: the generation R study.

OBJECTIVE: The aim was to investigate the concurrent and longitudinal associations of chronic pain with behavioral and emotional problems in toddlers, as it is not known which comes first in life. METHODS: The study was embedded in the Generation R Study, a prospective population-based cohort study. Parents of 3,751 toddlers completed questionnaires of their child's health and development. Behavioral and emotional problems were measured at 1.5 and 3 years, chronic pain was measured at 2 and 3 years. RESULTS: There were concurrent associations between chronic pain and internalizing problems, e.g. anxiety/depression symptoms. However, chronic pain did not precede the development of new behavioral and emotional problems. Also, behavioral and emotional problems did not precede new-onset chronic pain, except for somatic symptoms, which increased the likelihood of chronic pain. CONCLUSIONS: Chronic pain was associated with concurrent internalizing problems. Somatic complaints were not only concurrently related to pain but also predicted new-onset pain.

"No Official Help Is Available"-Experience of Parents and Children With Congenital Heart Disease During COVID-19.

INTRODUCTION: The purpose was to explore the experience, information and support needs, and decision-making of parents of children with congenital heart disease (CHD), as well as the children/young people themselves, during the COVID-19 crisis. MATERIALS AND METHODS: A survey study of parents of children with CHD, children and young people, capturing experiences, decision-making, information, and support needs during the COVID-19 crisis was conducted. The survey launched for one month (April 9, 2020) during the first infection wave in the United Kingdom and subsequent restriction of free movement under lockdown rules from March 23, 2020, until May 31, 2020. RESULTS: One hundred eighty-four parents and 36 children/young people completed the survey. Parents were more likely to worry about the virus (86.4%) than children/young people (69.4%), while (89%) parents were more vigilant for symptoms of the virus versus children/young people (69.4%). A thematic analysis of the qualitative comments covered 34 subthemes, forming eight overarching themes: Virus-(1) risk of infection; (2)information, guidance, and advice; (3) change in health care provision; and (4) fears and anxieties, and lockdown and isolation-(5) psychological and social impact, (6) keeping safe under lockdown, (7) provisions and dependence on others, and (8) employment and income. CONCLUSIONS: There was widespread concern over the virus especially among parents. Parents and children/young people, however, were frustrated with the lack of specific and pediatric-focused information and guidance, expressing disappointment with the adult-centric information available. Parents also felt alone, especially with their concerns around the implications of cardiac service suspension and the implication for their child's health. In order to better support children and their families, resources need to be developed to address families' and children/young people's concerns for their health during this pandemic.

Psychological determinants of health-related quality of life in patients with chronic liver disease.

BACKGROUND: The negative impact of chronic liver disease on health-related quality of life (HRQoL) of patients with chronic liver disease (CLD) has long been established, and treatable physiological or psychological factors may potentially influence HRQoL. OBJECTIVE: The authors assessed the interrelationships of multiple psychological factors and HRQoL in patients with CLD. METHOD: Both direct and indirect relationships among HRQoL, depression, anxiety, coping, and self-efficacy in 164 patients with CLD were assessed. RESULTS: Depression, largely determined by low self-efficacy and, possibly, by use of maladaptive coping strategies, influenced HRQoL in three groups of liver patients. CONCLUSION: HRQoL in CLD patients may be positively affected by enhancing coping and self-efficacy skills, thus improving levels of depression.

Improving growth of infants with congenital heart disease using a consensus-based nutritional pathway.

OBJECTIVE: Infants with congenital heart disease (CHD) often experience growth failure prior to surgery, which is associated with increased paediatric-intensive-care unit length of stay (PICU-LOS) and post-operative complications. This study assessed the impact of a pre-operative, consensus-based nutritional pathway (including support from a multi-disciplinary team) on growth and clinical outcome. DESIGN: Single-centre prospective pilot study. SETTING: Tertiary paediatric cardiology surgical centre. PATIENTS: Infants with CHD. INTERVENTION: Infants with CHD were followed for up to 4-months-of-age before cardiac surgery and then to 12-months-of-age following the implementation of the consensus-based nutritional-pathway (Intervention group: November 2017-August 2018), with outcomes compared to a historic control group. The nutrition pathway involved a dietitian contacting parents of infants with the highest risk of growth failure weekly; reviewing weight gain and providing feeding support. MAIN OUTCOME MEASURE: Growth (weight-for-age, WAZ, and height-for-age-z-score, HAZ) at 4 and 12 months-of-age. RESULTS: 44 infants in the intervention group were compared to 38 in the control group. Median (inter quartile range) change in WAZ from birth to 4 months-of-age (-0.9 (-1.5, 0.7)) and from birth to 12 months-of-age (-0.09 (-1.3, 1.1)) in the intervention group compared to the control group (-1.5 (-2.0, -0.4) (p = 0.04)) at 4 months-of age and at 12 months-of-age (-0.4 (1.9, 0.2) (p = 0.03)). HAZ at 4 months-of-age was -0.7 (-1.4, -0.1) vs. -1.0 (-1.9, -0.3) (p = 0.6) in the intervention and control groups respectively, and at 12 months-of-age HAZ was -0.7 (-1.9, -0.07) in the intervention group vs.-1.6 (-2.6, -0.4) in the control group (p = 0.04). Duration of PICU-LOS was 8.2 ± 11.6 days intervention vs. 18.3 ± 24.0 days control (p = 0.006). CONCLUSION: Overall weight was well maintained and growth improved in infants who followed the pre-operative nutritional-pathway. The duration of PICU-LOS was significantly lower in the intervention group, which may be due to improved nutritional status, although this requires further investigation.

Systematic review: measurement properties of patient-reported outcome measures evaluated with childhood brain tumor survivors or other acquired brain injury.

BACKGROUND: Survivors of childhood brain tumors or other acquired brain injury (ABI) are at risk of poor health-related quality of life (HRQoL); its valid and reliable assessment is essential to evaluate the effect of their illness on their lives. The aim of this review was to critically appraise psychometric properties of patient-reported outcome measures (PROMs) of HRQoL for these children, to be able to make informed decisions about the most suitable PROM for use in clinical practice. METHODS: We searched MEDLINE, EMBASE, and PsycINFO for studies evaluating measurement properties of HRQoL PROMs in children treated for brain tumors or other ABI. Methodological quality of relevant studies was evaluated using the consensus-based standards for the selection of health status measurement instruments checklist. RESULTS: Eight papers reported measurement properties of 4 questionnaires: Health Utilities Index (HUI), PedsQL Core and Brain Tumor Modules, and Child and Family Follow-up Survey (CFFS). Only the CFFS had evidence of content and structural validity. It also demonstrated good internal consistency, whereas both PedsQL modules had conflicting evidence regarding this. Conflicting evidence regarding test-retest reliability was reported for the HUI and PedsQL Core Module only. Evidence of measurement error/precision was favorable for HUI and CFFS and absent for both PedsQL modules. All 4 PROMs had some evidence of construct validity/hypothesis testing but no evidence of responsiveness to change. CONCLUSIONS: Valid and reliable assessment is essential to evaluate impact of ABI on young lives. However, measurement properties of PROMs evaluating HRQoL appropriate for this population require further evaluation, specifically construct validity, internal consistency, and responsiveness to change.

Developing the methods and questionnaire (VOICES-SF) for a national retrospective mortality follow-back survey of palliative and end-of-life care in England.

The National Survey of Bereaved People was conducted by the Office for National Statistics on behalf of NHS England for the first time in 2011, and repeated annually thereafter. It is thought to be the first time that nationally representative data have been collected annually on the experiences of all people who have died, regardless of cause and setting, and made publicly available informing palliative and end-of-life policy, service provision and development, and practice. This paper describes the development of the questionnaire used in the survey, VOICES-SF, a short-form of the VOICES (Views Of Informal Carers-Evaluation of Services) questionnaire, adapted specifically to address the aims of the national survey. The pilot study to refine methods for the national survey is also described. The paper also reports on the development of the retrospective, after-death or mortality follow-back method in palliative and end-of-life care, and reviews its strengths and weaknesses.

Quality of health care and patient satisfaction in liver disease: the development and preliminary results of the QUOTE-Liver questionnaire.

BACKGROUND: Consensus on how to adequately measure patient satisfaction with health care is limited, and has led to the development of many questionnaires with various methodological problems. The objective of this study was to develop a liver disease- and care-specific patient satisfaction instrument on the basis of previously tested methodology in patient satisfaction measurement, the so called QUOTE- series: Quality Of health care services Through the patients' Eyes. QUOTE methodology aims to standardise the measurement of satisfaction as the discrepancy between patients' needs, and the extent to which these needs are being met. METHODS: As part of the QUOTE methodology routine, 11 Patients with chronic liver disease from the Erasmus MC (Rotterdam, the Netherlands) participated in focus-group meetings on patient satisfaction with the provided service at the outpatient hepatology clinic. Twenty-eight other patients were invited to rank the items generated during the focus-group meetings according to importance. With this information, the QUOTE-Liver was constructed. Face validity, construct validity, content validity, and reliability of the newly developed questionnaire were assessed in a test sample of 152 patients with chronic liver disease. RESULTS: Two liver-disease specific, and the 18 items ranked as most important were included in the QUOTE-Liver. Face validity and content validity were acceptable: neither patients (n = 152) nor psychologists (n = 3) or a hepatologist suggested any extra items to be included. Construct validity was good: the overall score correlated significantly with the Visual Analogue Scale (VAS) measuring overall satisfaction (r = 0.69, p < 0.01). The reliability of the QUOTE-Liver was excellent (alpha = 0.90). CONCLUSION: The QUOTE-Liver is an easy to complete instrument based on standardized state-of-the-art satisfaction measurement methodology. Preliminary evidence for its validity and reliability was demonstrated. The QUOTE-liver covers those aspects of satisfaction that CLD patients consider to be important when visiting the outpatient department of hepatology. Even though further substantiating of the favourable psychometric findings is desirable, it seems to be a useful instrument that can be used to identify those aspects of care that need improvement in order to optimise the provision of health care for patients with chronic liver disease.