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AIM: We assessed the long-term health-related quality of life (HRQoL) of children who received sclerotherapy for lymphatic malformations. This treatment involved injecting drugs into the blood vessels to make them shrink. METHODS: Our cross-sectional study retrospectively reviewed patients who received OK-432 sclerotherapy injections at Karolinska University Hospital, Stockholm, Sweden, from 1998 to 2013. We studied 49 patients (63% female) aged 8-18 at least five years after their first injection. HRQoL was assessed with the KIDSCREEN-52 questionnaire and a study-specific questionnaire addressed disease consequences and patient satisfaction. We determined associations between HRQoL and disease and treatment and the patient's sex. RESULTS: Overall HRQoL paralleled age-appropriate norms in the general population, but some subgroups had lower levels. Regression-based estimates showed that larger numbers of injections were negatively associated with HRQoL in the dimensions autonomy, parent relations and home life, financial resources and school environment (p = 0.01-0.03). Malformations in the head and neck area were negative predictors across dimensions and were strongest for psychological well-being (p = 0.009), parent relations and home life (p = 0.017) and school environment (p = 0.006). CONCLUSION: Despite generally positive outcomes, multiple injections and malformations in the head and neck were associated with impaired HRQoL.

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BACKGROUND: This study examines information needs and satisfaction with provided information among childhood central nervous system (CNS) tumor survivors and their parents. MATERIAL AND METHODS: In a population-based sample of 697 adult survivors in Sweden, 518 survivors and 551 parents provided data. Information needs and satisfaction with information were studied using a multi-dimensional standardized questionnaire addressing information-related issues. RESULTS: Overall, 52% of the survivors and 48% of the parents reported no, or only minor, satisfaction with the extent of provided information, and 51% of the survivors expressed a need for more information than provided. The information received was found useful (to some extent/very much) by 53%, while 47% did not find it useful, or to a minor degree only. Obtaining written material was associated with greater satisfaction and usefulness of information. Dissatisfaction with information was associated with longer time since diagnosis, poorer current health status and female sex. The survivors experienced unmet information needs vis-à-vis late effects, illness education, rehabilitation and psychological services. Overall, parents were more dissatisfied than the survivors. CONCLUSION: These findings have implications for improvements in information delivery. Information in childhood CNS tumor care and follow-up should specifically address issues where insufficiency was identified, and recognize persistent and with time changing needs at the successive stages of long-term survivorship.

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BACKGROUND: Survivors of pediatric CNS tumors are at risk for persistent tumor/treatment-related morbidity, physical disability and social consequences that may alter self-perception, vital for self-identity, mental health and quality of survival. We studied the long-term impact of childhood CNS tumors and their treatment on the self-perception of adult survivors and compared outcomes with those of the general population. METHODS: The cohort included 697 Swedish survivors diagnosed with a primary CNS tumor during 1982-2001. Comparison data were randomly collected from a stratified general population sample. Survivors and general population individuals were compared as regards self-perception in 5 domains: body image, sports/physical activities, peers, work, and family, and with a global self-esteem index. Within the survivor group, determinants of impact on self-perception were identified. RESULTS: The final analyzed sample included 528 survivors, 75.8% of the entire national cohort. The control sample consisted of 995, 41% of 2500 addressed. Survivors had significantly poorer self-perception outcomes in domains of peers, work, body image, and sports/physical activities, and in the global self-perception measure, compared with those of the general population (all P < .001). Within the survivor group, female gender and persistent visible physical sequelae predicted poorer outcomes in several of the studied domains. Tumor type and a history of cranial radiation therapy were associated with outcomes. CONCLUSION: An altered self-perception is a potential late effect in adult survivors of pediatric CNS tumors. Self-perception and self-esteem are significant elements of identity, mental health and quality of survival. Therefore, care and psychosocial follow-up of survivors should include measures for identifying disturbances and for assessing the need for psychosocial intervention.

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BACKGROUND: In pediatric oncology, effective clinic-based management of acute and long-term distress in families calls for investigation of determinants of parents' psychological response to the child's cancer. We examined the relationship between parents' prior exposure to traumatic life events (TLE) and the occurrence of posttraumatic stress symptoms (PTSS) following their child's cancer diagnosis. Factors mediating the TLE-PTSS relationship were analyzed. METHODOLOGY: The study comprised 169 parents (97 mothers, 72 fathers) of 103 cancer diagnosed children (median age: 5,9 years; range 0.1-19.7 years). Thirty five parents were of immigrant origin (20.7%). Prior TLE were collated using a standardized questionnaire, PTSS was assessed using the Impact of Events-Revised (IES-R) questionnaire covering intrusion, avoidance and hyperarousal symptoms. The predictive significance of prior TLE on PTSS was tested in adjusted regression models. RESULTS: Mothers demonstrated more severe PTSS across all symptom dimensions. TLE were associated with significantly increased hyperarousal symptoms. Parents' gender, age and immigrant status did not significantly influence the TLE-PTSS relationship. CONCLUSIONS: Prior traumatic life-events aggravate posttraumatic hyperarousal symptoms. In clinic-based psychological care of parents of high-risk pediatric patients, attention needs to be paid to life history, and to heightened vulnerability to PTSS associated with female gender.

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PURPOSE: This study determined the incidence of disease-related distress symptoms in parents from two treatment sites: a large specialized childhood cancer (CC) center in Sweden and a smaller pediatric unit in Iceland. The two groups were compared by considering differences in center type and care organization. METHODS: Participants were 328 parents of 211 CC patients, in or off treatment. Illness-specific distress was assessed using the multi-dimensional Parental Psychosocial Distress in Cancer (PPD-C) questionnaire. General psychiatric symptoms were assessed using the General Health Questionnaire (GHQ-12). Swedish and Icelandic groups were compared and outcomes studied with regard to site characteristics. Parents in the general population served as a reference group. RESULTS: Distress outcomes in both clinical groups exceeded the levels of the reference group. Systematic differences were found between the parent groups, Icelandic parents scoring higher on 5 of the 11 distress subscales of the PPD-C and in a majority of the illness-specific domains. A tendency towards more negatively affected general mental health was found in Swedish parents (GHQ, p = 0.059). CONCLUSIONS: Distress outcomes exceeding those of the comparison group were found in both clinical groups. Significant distress differences were found between the Swedish and the Icelandic parents. Analysis of the outcomes indicates that center type and related differences in patient influx rate and local organization of care are viable explanations of the findings. Methods are proposed for enhancing family care at small centers in order to compensate for conditions associated with burden on parents of the child's cancer.

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Childhood CNS tumor survivors risk health and functional impairments that threaten normal psychological development and self-perception. This study investigated the extent to which health and functional ability predict adult survivors' body image (BI) and self-confidence regarding sports and physical activity. The study cohort covered 708 eligible ≥ 18 year old CNS tumor survivors, and data from 528 (75 %) were analyzed. Disability was estimated using the Health Utilities Index™ Mark2/3, a multidimensional self-report instrument. Physical self-confidence in terms of BI and sports/physical activity-related self-confidence (SPAS) were assessed using the BI and the Sports/Athletics modules of a standardized self-report assessment scale. In adjusted regression models, global health and functional status (GHFS) predicted BI (B = 0.94, 95 % CI 0.69-1.19) and SPAS (B = 0.79, 95 % CI 0.55-1.04). Emotion and pain, and to a lesser degree cognition, speech and vision disability, were associated with poorer BI and SPAS. Gender, sub-diagnosis, and time since diagnosis influenced the relationship between health status and physical self-confidence outcomes. Females had poorer GHFS, BI and SPAS than males. Decreased health and functional ability following childhood CNS cancer intrudes on physical self-confidence, with females being at heightened risk for both disability and negative self-confidence. Identified disability and gender-related risk calls for a follow-up plan that integrates treatment of psychological sequelae in lifetime monitoring of childhood CNS tumor survivors to restore and protect self-image and self-confidence, essential mental health correlates. An expanded plan should recognize the need for such services, optimizing life-long quality of survival for CNS tumor survivors.

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BACKGROUND: A child's cancer can lead to changes in parental role functioning, including loss of control. We studied the extent to which parental perceived loss of control during a child's cancer treatment predicted posttraumatic stress symptoms (PTSS) after completion of treatment. METHOD AND PARTICIPANTS: The sample of this longitudinal study included 62 parents (36 mothers and 26 fathers) of children currently in treatment for malignant disease (T1) and after completion of treatment (T2). Loss of control was assessed at T1 using a self-report measure, that is the loss of control module of the Parental Psychosocial Distress-Cancer questionnaire. PTSS were assessed at T2 using the Impact of Event Scale-Revised. Main analyses were carried out for mothers and fathers separately. RESULTS: The majority of the parents, 55% (n = 34), reported loss of control on more than half of the assessed domains. Only 5% (n = 3) reported no loss of control whatsoever. At T2, some degree of PTSS was reported by 89% (n = 55). These outcomes were similar for mothers and fathers. Loss of control at T1 predicted stronger PTSS at T2 primarily among mothers. CONCLUSION: The experience of loss of control during cancer treatment is a salient risk factor for later PTSS in mothers. The situational threat to the regular parental role is discussed as an explanation to this observation. Interventions should address informational needs, parent participation in care, and professional support to maintain a sense of control and functioning in their parental role.

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OBJECTIVE: This study aims to determine the long-term impact on families of adult survivors of childhood central nervous system tumors. Illness-related family consequences were studied in relation to modifying determinants. METHODS: In a population-based cohort of parents of 697 survivors 18 years and older, 551 parents provided data. The impact of cancer on the families was evaluated in four domains using the Impact on Family Scale (economic situation, personal burden, social life, sibling impact). The results were analyzed in relation to survivors' health assessed using the Health Utilities Index™, parent satisfaction with information about illness and treatment, and perceived health-care needs of their child. RESULTS: Despite an established mild-to-moderate impact on the group level, outcomes provided evidence of substantial cancer-related family consequences even once the child had reached adulthood. About one fifth of parents reported psychological and financial difficulties exceeding the cutoff limit for a significant impact still ≥ 5 years after diagnosis. A stronger total family impact was associated with poorer health of survivors (F[3,302] = 56.65, p < 0.001), and unmet informational - (F[3,231] = 14.06, p < 0.001) and health-care needs (t(218) = 5.31, p < 0.001). The impact was unrelated to survivors' age at follow-up and time since diagnosis. CONCLUSIONS: Adverse cancer-related consequences affect a considerable portion of families of childhood survivors of central nervous system tumor, even after reaching adulthood. The impact is aggravated by lasting sequelae and perceived shortcomings of long-term follow-up, factors that partly are avoidable. Improved clinical follow-up should particularly address illness information and long-term health-care needs to reduce the impact on families of survivors suffering from chronic health conditions.

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BACKGROUND: The purpose of the current study was to examine the persistent health care needs (HCNs) of adult survivors of childhood central nervous system tumors. METHODS: In this population-based study, 526 of 679 eligible survivors and 550 parents provided data. Survivors' HCNs were assessed using a questionnaire covering 4 domains: Medical Care, care coordination and communication (Care Coordination), Illness Education, and Psychosocial Services. Needs were categorized as no need, met need, and unmet need. Outcomes were analyzed specifically in relation to survivors' functional late effects as assessed using the Health Utilities Index Mark 2/3. RESULTS: Approximately 40% of survivors experienced their HCNs as exceeding the supposed general population average, and 41% had a current HCN that was unmet. The most common unmet need concerned the Psychosocial Services domain (reported by 40%), followed by a lack of Illness Education (35%), Care Coordination (22%), and Medical Care (15%). Survivors experiencing functional late effects had greater HCNs, and a greater percentage of unmet needs. Agreement between survivor-reported and parent proxy-reported HCNs was satisfactory, whereas agreement for survivors' unmet HCNs ranged from poor to satisfactory. CONCLUSIONS: Findings based on reliable double-informant data demonstrated that a considerable percentage of adult survivors report unmet HCNs, with female sex, younger age at diagnosis, and indications of disability and poor health status comprising significant risk factors. Issues critical for improved, comprehensive, long-term follow-up care were identified. Addressing these issues adequately in clinical follow-up extending into adulthood would likely improve the quality of comprehensive care for this patient group.

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AIM: Studies of parental reactions to a child's cancer have traditionally been carried out within the framework of psychiatry and psychopathology. We studied the significance of individual resource factors strengthening parents' resilience to long-term cancer-related distress, a focus that has rarely been used. PARTICIPANTS AND METHODS: The two-nation Nordic sample included 398 parents; 190 of whom had experienced a child's cancer, and 208 reference parents. We studied the sense of coherence (SOC) using the SOC-13 questionnaire. For assessing distress reactions we used a primarily illness-specific 11-dimensional Parental Psychosocial Distress in Cancer (PPD-C) self-report questionnaire developed for use with parents of childhood cancer patients, and the General Health Questionnaire (GHQ). Resilience was defined as absence of/less severe distress. RESULTS: Low SOC was significantly associated with more severe distress in all dimensions of the PPD-C and GHQ. The protective effect of SOC was indicated by it being most negatively related to general psychiatric symptoms, physical and psychological stress symptoms, anxiety and depression. The influence of SOC varied with parents' gender, showing a stronger modifying influence among mothers. Mothers and fathers also differed in their utilisation of professional psychosocial support when confronted with the child's cancer. CONCLUSION: Parental resilience to cancer-related distress varies with identifiable strength factors. A strengths-oriented approach helps in understanding parental adjustment to childhood cancer. In order to counteract psychological vulnerability, addressing resilience instead of pathology helps to identify parents at risk and in need of professional support when faced with a child's cancer.

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BACKGROUND: Studies of different national populations were indispensable for estimating the impact of illness-related disability on social outcomes in adult childhood cancer survivors. The effects of childhood cancer on educational attainment, employment, and income in adulthood in a Swedish setting were studied. METHODS: The study population was a national cohort of 1.46 million Swedish residents, including 1716 survivors of childhood cancer diagnosed before their 16th birthday, followed up in 2002 in registries at >25 years of age. Main outcomes were educational attainment, employment, and net income. Markers of persistent disability were considered, and outcomes were analyzed with multivariate linear and logistic regression models adjusted for age, sex, and socioeconomic indicators of the childhood households. RESULTS: Non-central nervous system (CNS) cancer survivors had similar education, employment, and income as the general population in adjusted models, whereas survivors of CNS tumors more often had no more than basic (< or =9 years) education (relative risk [RR], 1.80 [95% confidence interval (95% CI), 1.45-2.23]), less often attained education beyond secondary school (RR, 0.69 [95% CI, 0.58-0.81]), and less often were employed (RR, 0.85 [95% CI, 0.77-0.94]). Predicted net income from work was lower in CNS tumor survivors (P <.001) than in the general population, even after the exclusion of individuals who received economic disability compensation. CONCLUSIONS: CNS tumor survivors had poorer social outcomes compared with the general population, whereas outcomes for survivors of other childhood cancers were similar to the general population. Established late effects highlighted the importance of improved, safer pediatric CNS tumor treatment protocols and surveillance that identified individual needs for preventive and remedial measures.

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OBJECTIVE: We investigated how primary diagnosis and risk for diagnosis-related complication factors influence parental distress after a child's cancer diagnosis. METHODS: We used a model in which "complicated childhood cancers" were grouped into 1 category, after identifying a set of potentially influential illness complication variables. This category included central nervous system tumors, acute myeloid leukemia, and bone tumors. Parental distress in that category (n=144) was compared with distress after acute lymphoblastic leukemia (n=177) in the child. In addition, comparisons were made between parents of the specific diagnosis groups. A multidimensional questionnaire assessing symptoms of distress was used. RESULTS: Parents in the complicated cancer category showed significantly heightened disease-related fear, anxiety, depression, loss of control, late effects-related uncertainty, and poorer self-esteem compared with parents of children with acute lymphoblastic leukemia. Significantly heightened parental distress was associated with the child having been treated with cranial irradiation. CONCLUSIONS: Relatively heightened distress in parents of children with complicated cancer is influenced by diagnosis-related factors like an intricate prediagnostic phase, and uncertainty about late effects. Heightened vulnerability to distress signals exceptional needs for support and information among parents of children treated for central nervous system or bone tumors.

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The aim was to assess symptoms consistent with posttraumatic stress (PTS; cognitive intrusions, avoidance, arousal) related to the child's illness, and generic distress (anxiety, depression) in parents of childhood cancer patients. Outcomes were compared to normative and relevant reference data, and analysed for their dependence on time passed since diagnosis. Swedish parents (266 mothers, 208 fathers) were recruited at two centres. Data from a clinical sample of posttraumatic stress disorder (PTSD) patients and parents of healthy children were used for comparison. The Impact of Events Scale (IES-R) was used for assessing PTS symptoms, and self-report scales for anxiety and depression. Elevated stress and generic distress varied as a function of time from diagnosis. Up to 12% of parents for whom >5 years had passed since diagnosis still reported equally, or more intrusive thoughts, avoidance and arousal when contrasted to patients suffering from PTSD. Parents of recently diagnosed children had more cancer-related intrusive thoughts than those of long-term survivors. Heightened anxiety and depression was most prominent in mothers and fathers up to 2.5 years after diagnosis. In conclusion, severe generic distress characterises the first years after diagnosis, and initially common PTS symptoms are found in a considerable portion of parents years after diagnosis. Clinically, attention should be paid to continuous parent support needs. Individual variation vis-à-vis distress vulnerability should be acknowledged, and presupposed gender differences avoided. When treatment situation asks the most of parents' collaboration, many are under pressure of severe stress.

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PURPOSE: We studied the effects of childhood or adolescent cancer and cancer treatment on disability as indicated by persistent aid needs in adult life. PATIENTS AND METHODS: A group of 2,503 survivors of childhood cancer diagnosed before their 16th birthday were studied with data from registers in a national cohort of 1.91 million Swedish residents. Disability indicators were created from information in national registers about income (sickness pension, handicap allowance), personal assistance, and family situation in 2002. Multivariate logistic regression on the log scale was used to estimate relative risk (RR) ratios. RESULTS: A total of 7.6% of survivors received handicap allowance indicating permanent disability, including brain tumors (14.0%), other solid tumors (6.3), and leukemias/lymphomas (2.9%), compared with 0.6% in the general population. Twenty-six percent of survivors of CNS tumor and 10% of survivors of solid tumors had at least one indication of a disability. Younger age at diagnosis suggested a higher risk for disability. CNS tumor survivors had an RR of 10.7 (95% CI, 9.3 to 12.8) for having at least one disability indication compared with the noncancer population, whereas leukemia and lymphoma survivors had an RR of 3.0, and survivors of other cancers had an RR of 3.8. Survivors of CNS tumor only had an increased RR for living in the parental household (RR = 1.6; 95% CI, 1.4 to 1.9). CONCLUSION: Childhood cancer survivors more often have persistent needs of supportive measures provided by community and/or the parental household. The survivors of CNS tumors were at particular risk, indicating a need of safer treatment protocols, and tailored follow-up, prevention, and rehabilitation to address this persistent social disability.

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Previous research has shown perceived social support to be important for maintaining psychological well-being. However, severe stress may influence a person's perception of the availability and value of support from others. In this prospective study, we investigated changes in subjectively perceived social support among parents of children with cancer. Furthermore, we examined the role of parent gender and emotional distress (anxiety and depression) in predicting change in perceived support. Fifty-one parents (29 mothers and 22 fathers) participated. Perceived support, anxiety, and depression were assessed with self-report questionnaires. Parents were examined on 2 occasions. The initial assessment was completed within the first 6 months of the child's cancer treatment. At the time of the follow-up assessment 12 to 24 months later, cancer treatment was completed for all patients. On a group level, parents reported significantly poorer perceived support at the second assessment. However, further examination showed that for one fourth of the group, perceived support was improved. Depressive symptoms during the child's treatment predicted decline in perceived support. Anxiety and gender were not predictive of a change in perceived support.A comprehensive pediatric care model should pay particular attention to parents with a tottering perception of social support. Furthermore, the findings underscore the importance of early psychosocial attention to avoid negative long-term consequences of depression. Being in the frontline of patient care, the pediatric oncology nurse plays an important role in identifying early parents at risk and in shaping parents' perception of support.

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The objective was to examine the relationships between anxiety, the seeking of social support as a coping strategy, and perceived social support among mothers (n=103) and fathers (n=81) of children with successfully completed treatment for cancer. Assessments were done using self-report instruments. The mediating effect of perceived support on the relationship between social support-seeking and anxiety was evaluated through path analysis, and comparisons were done in order to evaluate effects of gender. For mothers and fathers alike, a positive relationship of moderate strength between support-seeking and perceived support was found. Anxiety was negatively related to support-seeking (mothers r=-0.22, p=0.025; fathers r=-0.21, p=0.063) as well as perceived support (mothers r=-0.55, p<0.001; fathers r=-0.41, p<0.001), although the relationship for support-seeking was weak. The path analysis showed that perceived support only to a minor extent could strengthen this association. The significance of support-seeking and perceived support was stronger for mothers than for fathers, as regards their association with anxiety. However, the patterns of interrelations were similar for mothers and fathers. In conclusion, parents' subjectively perceived support appears to be more important for anxiety regulation than their support-seeking coping. In clinical practice, individual variation should be acknowledged, and presumptions of general gender differences avoided.

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The objective was to cross-sectionally compare parents of children during (n = 175) and after (n = 238) cancer treatment regarding traumatic stress (intrusion, avoidance, arousal). In both groups, time since child's diagnosis ranged from one month to six years. Intrusion and arousal were more frequent in parents during ongoing treatment, although also reported by many parents after treatment. Stress was evaluated in relation to situational and demographic factors: Parents who had experienced a relapse did not differ from parents of non-relapsed children. Time since diagnosis was only weakly associated with stress. In the stage of completed treatment the risk for severe stress was elevated in parents with lower education and immigrant parents. Mothers reported somewhat higher levels of stress than fathers, although the findings were ambiguous. To conclude, many parents experience high levels of disease-related stress, even after successful treatment. The pattern of stress symptoms may vary according to educational level, ethnicity, and gender.

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