Longitudinal changes of psychological distress among childhood cancer survivors: The Swiss Childhood Cancer Survivor Study.

BACKGROUND: Childhood cancer survivors may experience psychological distress due to the disease, cancer treatments, and potential late effects. Limited knowledge exists regarding longitudinal changes in psychological distress after childhood cancer. We aimed to determine changes in psychological distress over time and explore determinants of changes. METHODS: The Swiss Childhood Cancer Survivor Study collected data at baseline (2007-2009) and follow-up (2010-2012). Psychological distress was measured using the Brief Symptom Inventory 18 (BSI-18), including three symptom scales (somatization, depression, anxiety) and an overall distress index (Global Severity Index, GSI). Sum-scores were T-standardized (mean = 50; standard deviation [SD] = 10). Survivors with a score ≥57 on the GSI or two symptom scales were classified as cases with distress. We used linear mixed effects regression to identify potential sociodemographic and clinical determinants of change in psychological distress. RESULTS: We analyzed 696 survivors at baseline (mean age = 24 years [SD = 4], 49% females, mean time since diagnosis = 16 years [SD = 4]). On follow-up (2.4 years, SD = 1), 317 survivors were analyzed, including 302 participants with repeated measures. We found that 13% (39/302) were cases at baseline, and 25% (76/302) were cases on follow-up. Those older at study and longer since diagnosis, females, diagnosed with central nervous system (CNS) tumors, and those reporting late effects were more likely to experience higher levels of distress. Females and unemployed are at higher risk for developing or persisting psychological distress than males and those who are employed or in training. CONCLUSION: We observed an increase in psychological distress score over time, with higher proportion of psychological distress on follow-up. Anticipatory guidance and screening should be implemented in regular follow-up care.

Validation of self-reported cardiovascular problems in childhood cancer survivors by contacting general practitioners: feasibility and results.

BACKGROUND: Epidemiological studies often rely on self-reported health problems and validation greatly improves study quality. In a study of late effects after childhood cancer, we validated self-reported cardiovascular problems by contacting general practitioners (GPs). This paper describes: (a) the feasibility of this approach; and (b) the agreement between survivor-reports and reports from their GP. METHODS: The Swiss Childhood Cancer Survivor Study (SCCSS) contacts all childhood cancer survivors registered in the Swiss Childhood Cancer Registry since 1976 who survived at least 5 years from cancer diagnosis. We validated answers of all survivors who reported a cardiovascular problem in the questionnaire. Reported cardiovascular problems were hypertension, arrhythmia, congestive heart failure, myocardial infarction, angina pectoris, stroke, thrombosis, and valvular problems. In the questionnaire, we further asked survivors to provide a valid address of their GP and a consent for contact. We sent case-report forms to survivors' GPs and requested information on cardiovascular diagnoses of their patients. To determine agreement between information reported by survivors and GPs, we calculated Cohen's kappa (κ) coefficients for each category of cardiovascular problems. RESULTS: We used questionnaires from 2172 respondents of the SCCSS. Of 290 survivors (13% of 2172) who reported cardiovascular problems, 166 gave consent to contact their GP and provided a valid address. Of those, 135 GPs (81%) replied, and 128 returned the completed case-report form. Survivor-reports were confirmed by 54/128 GPs (42%). Of the 54 GPs, 36 (28% of 128) confirmed the problems as reported by the survivors; 11 (9% of 128) confirmed the reported problem(s) and gave additional information on more cardiovascular outcomes; and seven GPs (5% of 128) confirmed some, but not all cardiovascular problems. Agreement between GPs and survivors was good for stroke (κ = 0.79), moderate for hypertension (κ = 0.51), arrhythmias (κ = 0.41), valvular problems (κ = 0.41) and thrombosis (κ = 0.56), and poor for coronary heart disease (κ = 0.15) and heart failure (κ = 0.32). CONCLUSIONS: Despite excellent GP compliance, it was found unfeasible to validate self-reported cardiovascular problems via GPs because they do not serve as gatekeepers in the Swiss health care system. It is thus necessary to develop other validation methods to improve the quality of patient-reported outcomes.

Palliative care services in paediatric oncology centres across Europe: A cross-sectional survey.

Background: Palliative care (PC) is an integral part of cancer treatment. However, data on service availability is limited in childhood cancers. Aim: To describe the availability of PC services in paediatric oncology centres across Europe, and to identify barriers and facilitators for implementing and providing paediatric palliative care (PPC). Methods: Paediatric oncology centres across Europe were invited to complete an online questionnaire. Results: A total of 158 paediatric oncology centres from 27 European countries participated. More than half of the centres (n=102, 64.6%) reported offering specialised PPC (defined as 24/7 coverage services with specialized physician and a multidisciplinary team). Most centres included a multidisciplinary care team (n=123, 80.9%) and PC at home (n=105, 69.1%). In 38.7% centres, service capacity was reported to be lower than demand. In most centres, PC consultation was initiated for a refractory neoplasm (n=126, 81.2%). Few centres (n=11, 7.1%) offered PC consultation at the time of a new cancer diagnosis. Eighty-two centres (52.6%) reported having bereavement services. Negative parental perception (n=99, 64.7%) and late referrals (n=91, 59.5%) were major barriers to implementation perceived by health care providers. Conclusion: Our results suggest that specialised PPC is available in more than half of paediatric oncology settings across Europe. Although half have had PPC available for >10 years, many cannot fulfil the demand for service. Barriers to implementation (i.e., parental education, staff training) should be addressed, with resources and services further expanded to cover the demand for PPC, including bereavement care.

Specialised Paediatric PAlliativE CaRe: Assessing family, healthcare professionals and health system outcomes in a multi-site context of various care settings: SPhAERA study protocol.

BACKGROUND: The number of children and adolescents living with life-limiting conditions and potentially in need for specialised paediatric palliative care (SPPC) is rising. Ideally, a specialised multiprofessional team responds to the complex healthcare needs of children and their families. The questions of, how SPPC is beneficial, for whom, and under what circumstances, remain largely unanswered in the current literature. This study's overall target is to evaluate the effectiveness of a SPPC programme in Switzerland with respect to its potential to improve patient-, family-, health professional-, and healthcare-related outcomes. METHODS: This comparative effectiveness study applies a quasi-experimental design exploring the effectiveness of SPPC as a complex intervention at one treatment site in comparison with routine care provided in a generalised PPC environment at three comparison sites. As the key goal of palliative care, quality of life - assessed at the level of the patient-, the family- and the healthcare professional - will be the main outcome of this comparative effectiveness research. Other clinical, service, and economic outcomes will include patient symptom severity and distress, parental grief processes, healthcare resource utilisation and costs, direct and indirect health-related expenditure, place of death, and introduction of SPPC. Data will be mainly collected through questionnaire surveys and chart analysis. DISCUSSION: The need for SPPC has been demonstrated through numerous epidemiological and observational studies. However, in a healthcare environment focused on curative treatment and struggling with limited resources, the lack of evidence contributes to a lack of acceptance and financing of SPPC which is a major barrier against its sustainability. This study will contribute to current knowledge by reporting individual and child level outcomes at the family level and by collecting detailed contextual information on healthcare provision. We hope that the results of this study can help guiding the expansion and sustainability of SPPC and improve the quality of care for children with life-limiting conditions and their families internationally. TRIAL REGISTRATION: Registered prospectively on ClinicalTrials.gov on January 22, 2020. NCT04236180 PROTOCOL VERSION: Amendment 2, March 01, 2021.

Bereaved parents' perspectives on their child's end-of-life care: connecting a self-report questionnaire and interview data from the nationwide Paediatric End-of-LIfe CAre Needs in Switzerland (PELICAN) study.

BACKGROUND: Paediatric Palliative Care (PPC) focuses on ensuring the best possible quality of life for the child and his/her family by extending beyond the physical domain into psychosocial and spiritual wellbeing. A deep understanding of what is important to parents is crucial in guiding the further evaluation and improvement of PPC and end-of-life (EOL) care services. Much can be learned from specific positive and negative experiences of bereaved parents with the EOL care of their child. This report builds upon a questionnaire survey as part of the national Paediatric End-of-LIfe CAre Needs in Switzerland (PELICAN) study. METHODS: One part of the PELICAN study was set up to assess and explore the parental perspectives on their child's EOL care. Interview data were used to explain the extremely positive and negative results of a quantitative survey in an explanatory sequential mixed-methods approach. Data integration occurred at different points: during sampling of the interview participants, when designing the interview guide and during analysis. A narrative approach was applied to combine the qualitative results reported here with the already published quantitative survey results. RESULTS: Eighteen mothers (60%) and twelve fathers (40%) participated in 20 family interviews. All parents reported having both positive and negative experiences during their child's illness and EOL, which was characterised by many ups and downs. The families transitioned through phases with a prospect of a cure for some children as well as setbacks and changing health status of the child which influenced prognosis, leading to the challenge of making extremely difficult decisions. Severely negative experiences still haunted and bothered the parents at the time when the interview took place. CONCLUSIONS: A deep understanding of the perspectives and needs of parents going through the devastating event of losing a child is important and a prerequisite to providing compassionate care. This complex care needs to recognise and respond to the suffering not only of the child but of the parents and the whole family. Communication and shared decision-making remain pivotal, as do still improvable elements of care that should build on trustful relationships between families and healthcare professionals.

Top Ten Tips Palliative Care Clinicians Should Know About Prognostication in Children.

Pediatric palliative care (PPC) is different from palliative care (PC) for adults. However, conceptualizing PPC remains cumbersome due to the high heterogeneity of often rare diseases, the high diversity of disease trajectories, and the particular difficulty to predict the future of an individual, severely ill child. This article aims to provide an overview and critical reflection of different aspects of prognostication in children with PC needs. This includes different diseases from neurology to oncology, from the unborn baby to the young adult, new approaches in treatment, advance care planning, and, most important, communication with the affected child as well as parents.

Differing needs of mothers and fathers during their child's end-of-life care: secondary analysis of the "Paediatric end-of-life care needs" (PELICAN) study.

BACKGROUND: Mothers and fathers are severely challenged when providing care for their terminally ill child at end of life. Caregiving needs have been studied predominantly in mothers. Differences in caregiving needs between mothers and fathers during their child's end of life have not, however, been explored so far. This knowledge is of importance to best meet individual parental needs in paediatric end-of-life care. METHODS: Secondary analysis of a quantitative survey on parental needs during their child's last 4 weeks of life, collected in the Swiss multicentre "Paediatric End-of-Life Care Needs" (PELICAN) study. Caregiving needs of mothers and fathers (parental dyad) who had lost a child due to a cardiological, neurological or oncological disease or during the neonatal period in the years 2011-2012 were retrospectively assessed using a questionnaire representing six evidence-based quality domains of paediatric palliative and end-of-life care. RESULTS: Seventy-eight parental dyads were included in this analysis. Differences between mothers and fathers were mostly found around needs to be supported as a family. In all, 28 out of 34 needs-related questionnaire items were scored higher by mothers than by fathers, indicating higher importance for that need to be met. The results indicate that these differences might relate to different caregiving roles and gender-specific coping strategies. CONCLUSIONS: To best meet parental needs in paediatric end-of-life care, particular attention should be paid to both mothers and fathers and their specific caregiving roles, as differences in these roles might influence their needs in this exceptional situation. Therefore, healthcare professionals should identify how parental dyads mutually navigate care for their sick child to best meet their needs in support. Additionally, mothers and fathers should be supported in their individual coping strategies.

Deficiencies in paediatric research applications delaying ethics committee approval.

BACKGROUND: A clinical research application must be submitted for approval by a competent ethics committee (EC) before a study can be executed. There is very limited information on how such submissions could be optimised, especially regarding research in children and adolescents, which requires particular caution and age-adapted patient information. METHODS: We assessed all research applications from the University Children’s Hospital Zurich submitted to the EC of the Canton of Zurich in 2014–2015, i.e., in the first two years after Switzerland’s new Human Research Act came into effect. Moreover, we validated our findings by assessing a randomly selected sample of applications from the same hospital in 2018–2019. RESULTS: We assessed a total of 86 applications from 2014–2015, originating from 29 departments and sub-specialties. The EC judged that it was not responsible for three applications and declined an assessment for another three because the studies had already been conducted. Thus, we included 80 applications in the present analysis (18 clinical trials, 52 research projects, 10 further use projects). Applicants withdrew four applications before the EC’s final decision and the EC rejected two after assessment. The EC had objections in 46 (62%) of the remaining 74 applications. Formal, including formal legal, objections (n = 503) and legal objections (n = 287) accounted for the vast majority of objections. There were also 71 ethical and 82 scientific objections. The most frequent formal and formal legal objections were incomplete or missing age-adapted patient information (49%) and incorrect templates for informed consent and signature forms (46%). A review of the 20 randomly selected applications from 2018–2019 confirmed that four out of the five most frequent deficiencies relating to informed consent were identical to those observed in the 2014–2015 applications. CONCLUSIONS: Careful preparation of submission documents by the investigators and close adherence to formal and legal requirements have the potential to considerably optimise and expedite the EC review process, and thus the commencement of the clinical research.    .

Comparison of End-of-Life Care Practices Between Children With Complex Chronic Conditions and Neonates Dying in an ICU Versus Non-ICUs: A Substudy of the Pediatric End-of-LIfe CAre Needs in Switzerland (PELICAN) Project.

OBJECTIVES: To describe and compare characteristics of care provided at the end of life for children with chronic complex conditions and neonates who died in an ICU with those who died outside an ICU. DESIGN: Substudy of a nation-wide retrospective chart review. SETTING: Thirteen hospitals, including 14 pediatric and neonatal ICUs, two long-term institutions, and 10 community-based organizations in the three language regions of Switzerland. PATIENTS: One hundred forty-nine children (0-18 yr) who died in the years 2011 or 2012. Causes of death were related to cardiac, neurologic, oncological, or neonatal conditions. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Demographic and clinical characteristics, therapeutic procedures, circumstances of death, and patterns of decisional processes were extracted from the medical charts. Ninety-three (62%) neonates (median age, 4 d) and children (median age, 23 mo) died in ICU, and 56 (38%) with a median age of 63 months outside ICU. Generally, ICU patients had more therapeutic and invasive procedures, compared with non-ICU patients. Changes in treatment plan in the last 4 weeks of life, such as do-not-resuscitate orders occurred in 40% of ICU patients and 25% of non-ICU patients (p < 0.001). In the ICU, when decision to withdraw life-sustaining treatment was made, time to death in children and newborns was 4:25 and 3:00, respectively. In institutions where it was available, involvement of specialized pediatric palliative care services was recorded in 15 ICU patients (43%) and in 18 non-ICU patients (78%) (p = 0.008). CONCLUSIONS: This nation-wide study demonstrated that patients with a complex chronic condition who die in ICU, compared with those who die outside ICU, are characterized by fast changing care situations, including when to withdraw life-sustaining treatment. This highlights the importance of early effective communication and shared decision making among clinicians and families.

Communicating "cure" to pediatric oncology patients: A mixed-methods study.

BACKGROUND: Uncertainty about cure puts childhood cancer survivors at risk of mental distress. We asked survivors if they had been told they had been cured and investigated associated factors. PROCEDURE: We used nationwide registry data and a questionnaire survey for ≥five-year survivors of childhood cancer (n = 301), followed by online focus groups with a purposive sample of Swiss pediatric oncologists (n = 17). Discussions were coded by investigators using thematic analysis. RESULTS: Overall, 235 among 301 survivors (78%; 95% confidence interval, 73%-83%) reported having been told they were cured. The proportion was 89% (81%-97%) among lymphoma and 84% (77%-91%) among leukemia survivors, but only 49% (33%-65%) among central nervous system tumor survivors. Pediatric oncologists acknowledged that telling survivors they are cured may reassure them that their cancer lies behind them. However, many refrained from telling all patients. Reasons included the possibility of late effects (cure disrupted by a continued need for follow-up care) or late relapse (uncertainty of biological cure), case-by-case strategies (use of "cure" according to individual factors), and reluctance (substitution of noncommittal terms for "cure"; waiting for the patient to raise the topic). CONCLUSIONS: Not all physicians tell survivors they have been cured; their choices depend on the cancer type and risk of late effects.

Patterns of paediatric end-of-life care: a chart review across different care settings in Switzerland.

BACKGROUND: Paediatric end-of-life care is challenging and requires a high level of professional expertise. It is important that healthcare teams have a thorough understanding of paediatric subspecialties and related knowledge of disease-specific aspects of paediatric end-of-life care. The aim of this study was to comprehensively describe, explore and compare current practices in paediatric end-of-life care in four distinct diagnostic groups across healthcare settings including all relevant levels of healthcare providers in Switzerland. METHODS: In this nationwide retrospective chart review study, data from paediatric patients who died in the years 2011 or 2012 due to a cardiac, neurological or oncological condition, or during the neonatal period were collected in 13 hospitals, two long-term institutions and 10 community-based healthcare service providers throughout Switzerland. RESULTS: Ninety-three (62%) of the 149 reviewed patients died in intensive care units, 78 (84%) of them following withdrawal of life-sustaining treatment. Reliance on invasive medical interventions was prevalent, and the use of medication was high, with a median count of 12 different drugs during the last week of life. Patients experienced an average number of 6.42 symptoms. The prevalence of various types of symptoms differed significantly among the four diagnostic groups. Overall, our study patients stayed in the hospital for a median of six days during their last four weeks of life. Seventy-two patients (48%) stayed at home for at least one day and only half of those received community-based healthcare. CONCLUSIONS: The study provides a wide-ranging overview of current end-of-life care practices in a real-life setting of different healthcare providers. The inclusion of patients with all major diagnoses leading to disease- and prematurity-related childhood deaths, as well as comparisons across the diagnostic groups, provides additional insight and understanding for healthcare professionals. The provision of specialised palliative and end-of-life care services in Switzerland, including the capacity of community healthcare services, need to be expanded to meet the specific needs of seriously ill children and their families.

Congenital malformations, palliative care and postnatal redirection to more intensive treatment - a review at a Swiss tertiary center.

PURPOSE: The so-called lethal malformations pose ethical challenges. Most affected fetuses die before or at birth. Live-born neonates commonly receive palliative care. If the postnatal course is better than expected, redirection towards more treatment may occur. We aimed to analyze this in a Swiss patient cohort. MATERIALS AND METHODS: Over 6 years, fetal malformation was suspected in 1113 cases. We identified patients prenatally assigned to palliative care, assessed pre- and postnatal diagnoses, and outcomes. RESULTS: Fourteen neonates received palliative care. Eleven patients received palliative care following late termination of pregnancy, for three, palliative care was planned and the fetus died during delivery, for two, the outcome was unknown (incomplete documentation). Genetic testing was performed in 50%. The predominant diagnostic group was central nervous system malformations (33%), followed by chromosomal aberrations (20%) and renal anomalies (17%). One child assigned to palliative care was resuscitated. Antenatal findings were anhydramnios and pulmonary hypoplasia. Postnatally, respiration was better than expected. The neonate was admitted to intensive care, died on day one. CONCLUSIONS: Nervous system malformations seem to be a major criterion for foregoing life-sustaining interventions. Redirection towards more treatment is rare. This may reflect precise prenatal prognostication; a degree of self-fulfilling prophecy cannot be excluded.

Maintaining family life balance while facing a child's imminent death-A mixed methods study.

AIM: To understand parents' experiences and needs during a child's end-of-life care at home and to identify systemic factors that influence its provision. BACKGROUND: A child's end-of-life phase is an extremely difficult time for the whole family. Parents have specific needs, especially when they care for a dying child at home. DESIGN: Concurrent embedded mixed methods design. METHODS: This sub-study of the nationwide survey, 'Paediatric End-of-Life Care Needs in Switzerland' (2012-2015) included 47 children who received EOL care at home from 2011-2012. We extracted quantitative data from patients' medical charts and obtained information via parental questionnaire and then compared parents whose child died at home or in hospital by computing generalized estimation equations. We thematically analysed interviews with parents who provided EOL care at home. RESULTS: Parents created an intimate lifeworld and a sense of normality for the child at home. They constantly balanced the family's lifeworld with the requirements and challenges posed by the outside world. This work exhausted parents. Parental 'readiness' and social support drove EOL care for children at home. Parents needed practical help with housekeeping and had negative experiences when dealing with insurance. In only 34.8% of cases was a child's EOL home care supported by paediatric palliative care team. CONCLUSION: Paediatric end-of-life care at home is only feasible if parents make extraordinary efforts. If family-centred end-of-life home care is provided by a hospital-based paediatric palliative home care team, which includes paid housekeeping help and psychological support, parents' needs could be better met.

Inter-Reader Reliability of Early FDG-PET/CT Response Assessment Using the Deauville Scale after 2 Cycles of Intensive Chemotherapy (OEPA) in Hodgkin's Lymphoma.

PURPOSE: The five point Deauville (D) scale is widely used to assess interim PET metabolic response to chemotherapy in Hodgkin lymphoma (HL) patients. An International Validation Study reported good concordance among reviewers in ABVD treated advanced stage HL patients for the binary discrimination between score D1,2,3 and score D4,5. Inter-reader reliability of the whole scale is not well characterised. METHODS: Five international expert readers scored 100 interim PET/CT scans from paediatric HL patients. Scans were acquired in 51 European hospitals after two courses of OEPA chemotherapy (according to the EuroNet-PHL-C1 study). Images were interpreted in direct comparison with staging PET/CTs. RESULTS: The probability that two random readers concord on the five point D score of a random case is only 42% (global kappa = 0.24). Aggregating to a three point scale D1,2 vs. D3 vs. D4,5 improves concordance to 60% (kappa = 0.34). Concordance if one of two readers assigns a given score is 70% for score D1,2 only 36% for score D3 and 64% for D4,5. Concordance for the binary decisions D1,2 vs. D3,4,5 is 67% and 86% for D1,2,3 vs D4,5 (kappa = 0.36 resp. 0.56). If one reader assigns D1,2,3 concordance probability is 92%, but only 64% if D4,5 is called. Discrepancies occur mainly in mediastinum, neck and skeleton. CONCLUSION: Inter-reader reliability of the five point D-scale is poor in this interobserver analysis of paediatric patients who underwent OEPA. Inter-reader variability is maximal in cases assigned to D2 or D3. The binary distinction D1,2,3 versus D4,5 is the most reliable criterion for clinical decision making.

When parents face the death of their child: a nationwide cross-sectional survey of parental perspectives on their child's end-of life care.

BACKGROUND: Parents facing the death of their child have a strong need for compassionate professional support. Care services should be based on empirical evidence, be sensitive to the needs of the families concerned, take into account the heterogeneity within the medical field of paediatrics, and fit into the local health care system. We need to better understand the perspectives of parents facing the death of their child in order to guide further development and evaluation of specialised paediatric palliative and end-of-life (EOL) care services. METHODS: Questionnaire survey to assess the EOL care perspectives of a Swiss population-based sample of bereaved parents who had lost a child due to a cardiac, neurological or oncological condition, or during the neonatal period in the years 2011 or 2012. The parental perspective was assessed with a newly developed and tested instrument that was structured according to six evidence-based quality domains. Responses regarding parental experiences and perceived satisfaction are described. Differences between the four diagnostic groups are analysed using a generalized estimation equation to account for the dyadic data structure. RESULTS: Of 307 eligible families, 267 could be contacted and 135 (51%) consented to participate in this questionnaire survey. Our findings show positive parental experiences of their child's EOL care and high perceived satisfaction with the care their child received. Parents of a child with cancer rated their experiences highest in most of the six quality domains and reported the highest satisfaction with care. The lowest scores were mainly reported by parents from the neurology group, with the exception of the shared decision making domain, where parents of neonates reported significantly less positive experiences. CONCLUSIONS: Although positive in general, our study results suggest some areas for improvement. The integration of specialised paediatric palliative care has the potential to minimise lost opportunities to support and assist parents.

Follow-up care of young childhood cancer survivors: attendance and parental involvement.

PURPOSE: Despite recommendations, only a proportion of long-term childhood cancer survivors attend follow-up care. We aimed to (1) describe the follow-up attendance of young survivors aged 11-17 years; (2) describe the parental involvement in follow-up, and (3) investigate predictors of follow-up attendance and parental involvement. METHODS: As part of the Swiss Childhood Cancer Survivor Study, a follow-up questionnaire was sent to parents of childhood cancer survivors aged 11-17 years. We assessed follow-up attendance of the child, parents' involvement in follow-up, illness perception (Brief IPQ), and sociodemographic data. Clinical data was available from the Swiss Childhood Cancer Registry. RESULTS: Of 309 eligible parents, 189 responded (67 %; mean time since diagnosis 11.3 years, range 6.8-17.2) and 75 % (n = 141) reported that their child still attended follow-up. Of these, 83 % (n = 117) reported ≥1 visit per year and 17 % (n = 23) reported <1 visit every year. Most survivors saw pediatric oncologists (n = 111; 79 % of 141), followed by endocrinologists (n = 24, 17 %) and general practitioners (n = 22, 16 %). Most parents (92 %) reported being involved in follow-up (n = 130). In multivariable and Cox regression analyses, longer time since diagnosis (p = 0.025) and lower perceived treatment control (assessed by IPQ4: how much parents thought follow-up can help with late effects; p = 0.009) were associated with non-attendance. Parents' overall information needs was significantly associated with parental involvement in the multivariable model (p = 0.041). CONCLUSION: Educating survivors and their parents on the importance and effectiveness of follow-up care might increase attendance in the longer term.

Death certificate notifications in the Swiss Childhood Cancer Registry: assessing completeness and registration procedures.

QUESTIONS UNDER STUDY: Completeness is important in cancer registration. Identifying areas to improve registry procedures might help to maximise completeness. We examined characteristics of childhood cancer cases that were registered via death certificate notification (DCN) rather than during life, and estimated completeness of the Swiss Childhood Cancer Registry (SCCR). METHODS: We analysed data from all children who died from cancer in Switzerland between 1985-2009 at age <16 years (n = 978), and checked whether they had been registered in the SCCR. We used multivariable logistic regression to compare characteristics of DCN cases with deceased SCCR cases, and the DCN-to-incidence and mortality-to-incidence ratio method to estimate completeness for different diagnostic periods. RESULTS: Among 978 deceased children with cancer, 126 (12.9%) were registered via DCN. Those with tumours of digestive organs (odds ratio [OR] 5.1; 95% confidence interval [CI] 1.9-13.7), tumours of endocrine glands (OR 4.5; 95% CI 1.6-12.3), and brain tumours (OR 3.1; 95% CI 1.7-5.5) were more likely to be DCN cases than those with leukaemia. Neonates (OR 14.1, 95% CI 5.3-37.3), infants (OR 7.5; 95% CI 3.1-18.0) and 14-15 year olds (OR 2.4; 95% CI 1.2-4.9) were more likely to be DCN cases than 1-4 year olds. The DCN proportion was particularly high in infants who lived in rural regions. Estimated completeness of the SCCR increased from 85% for 1985-89 to ≥ 95% for 1995-2009. CONCLUSIONS: Childhood cancer registration in Switzerland was quite complete, but registration must improve for infants, particularly neonates, and children diagnosed with hepatic, endocrine and brain tumours.

Development and initial validation of the Parental PELICAN Questionnaire (PaPEQu)--an instrument to assess parental experiences and needs during their child's end-of-life care.

AIM: To develop and test the Parental PELICAN Questionnaire, an instrument to retrospectively assess parental experiences and needs during their child's end-of-life care. BACKGROUND: To offer appropriate care for dying children, healthcare professionals need to understand the illness experience from the family perspective. A questionnaire specific to the end-of-life experiences and needs of parents losing a child is needed to evaluate the perceived quality of paediatric end-of-life care. DESIGN: This is an instrument development study applying mixed methods based on recommendations for questionnaire design and validation. METHOD: The Parental PELICAN Questionnaire was developed in four phases between August 2012-March 2014: phase 1: item generation; phase 2: validity testing; phase 3: translation; phase 4: pilot testing. Psychometric properties were assessed after applying the Parental PELICAN Questionnaire in a sample of 224 bereaved parents in April 2014. Validity testing covered the evidence based on tests of content, internal structure and relations to other variables. RESULTS: The Parental PELICAN Questionnaire consists of approximately 90 items in four slightly different versions accounting for particularities of the four diagnostic groups. The questionnaire's items were structured according to six quality domains described in the literature. Evidence of initial validity and reliability could be demonstrated with the involvement of healthcare professionals and bereaved parents. CONCLUSION: The Parental PELICAN Questionnaire holds promise as a measure to assess parental experiences and needs and is applicable to a broad range of paediatric specialties and settings. Future validation is needed to evaluate its suitability in different cultures.